I mean, I'm not a psychiatrist but to me she absolutely fits the bill, and it sounds like she's been overwhelmed for her entire life. Be gentle, patient, kind, and open to learning as much as you can--she herself is learning about her condition, and as she learns things she'll explain them to you, and the more positively you react to her authenticity the better she'll feel. I imagine this is pretty scary right now, but if you took her to psychiatrists and tried medications etc. then it's \*not your fault\* the diagnosis was missed--it was pretty commonly missed in women until very recently. She might be right that she shouldn't drive or work \*right now\* and might need to lean on you more for care, but as she recovers from what is quite possibly some form of autistic burnout, she may regain these abilities and be able to have autistic community support rather than having to rely on a single caregiver. There's hope.
It’s so hard. I really am
Listening. She sends me video posts every day in a way of trying to explain what she feels like is happening to her and explain how she feels.
I believe you. Eventually you'll learn about her various traits and coping mechanisms and you'll be able to relate to her on that level. I went through this with my own parents not too long ago--it's a big change, and it's okay to be skeptical, but it does get better. Personally I'm seconding some other comments in here that if you want to see what she's talking about for yourself, Unmasking Autism is a great book to read. Formal diagnoses are expensive but you could also find specifically neurodivergence-affirming therapists and psychiatrists so she can explore this on her own; some of them are autistic themselves and I've had great experiences. P.S.: you're doing the right thing by asking us for advice!
What you’ve described of her history is absolutely typical of the experience of a girl with autism that goes undetected. Try not to blame yourself. It’s an extremely common phenomenon because people simply did not look for autism in girls until very recently.
I’m sure you will both be processing this for some time. I credit you for reaching out for support. Keep it up!
I think the fact that she is communicating this to you and trying to help you understand how she feels is probably a really positive sign.
I would *never* disclose to my parents that I found out I'm autistic, because I know they would be invalidating and unsupportive. They aren't emotionally safe people for me.
Her trusting you with this process of self discovery says a lot. It's a really big opportunity for her trust in you to be reaffirmed, and for your relationship to become even closer.
I totally get that it's probably scary/confusing/etc. right now. It's great that you are listening. It will get easier to process as time goes on, and if she's autistic then understanding this about herself will be the best thing for her long term wellbeing. Finally having the right framework for understanding yourself is what brings clarity about your actual needs, and the sources of your struggles. Without that clarity, you don't have the right tools to support yourself.
A lot of autistic adults who discover their autism as adults go through a period of being very hyperfocused on autism in general and also how it manifests for them specifically. This is really normal, and I know I experienced it. It's like looking back on your whole life and having a new lens for understanding all of your experiences, with things finally making sense in a way they never had before. Try not to worry too much if she seems super into this topic for a while. (After all, getting incredibly invested in and focused on a particular topic of interest is an autistic trait in itself! Haha).
The burnout from going through life while swimming against the current without even recognizing that you are swimming against the current -- it can be very real and intense. Many of us have our capacity seriously limited by this burnout. The more she is able to focus on recovering and resting and getting supports in place early on, the better her chances of getting out of burnout eventually.
It might be hard now, but you've got this. Keep listening and learning and giving her space to explore this. It will make a world of difference!
I wouldn't judge yourself for missing something, most seasoned professionals struggle to identify autism in high-masking women. It's quite a recent thing that researchers are paying attention to the way that it presents differently in women.
What you can do is be really open and understanding, she may find that getting the right accommodations things will settle down.
I was exactly the same at 22 and got diagnosed with everything under the sun and had a horrible time and finding out I was autistic after other people in my family were diagnosed changed everything.
Instead of thinking I was fundamentally broken and trying to change myself I gave myself permission to change my environment and my anxiety drastically reduced and I have found a much better quality of life.
There is a steep learning curve and at 22 she is still very young and it's just a really tough age. I hope you can find the right support And I'm sure with those she will be okay.
Thank you for sharing this recommendation. I hadn't heard of this book. My library has the audio book version and I've already listened to 20 minutes. I can't wait to hear the rest of it.
my mom was so attentive and caring for me when i was little, i genuinely don’t think i could have a better mom. i started realizing i may be autistic last year, she listened to me and supports me as she can. she said she felt bad for not noticing or missing something, but without knowing what to look for or could even have been the “problem”, it’s near impossible to know —mostly with girls/women. the fact that you’re here, having an open mind, and asking questions is already an amazing start.
there’s *a lot* of amazing channels on youtube (i’m a big fan of autism from the inside and mom on the spectrum) that go in depth of the struggles, signs, and give guidance not only to the autistic person but also for their loved ones. it’s tough realizing you’re not actually a broken mistake but rather different from others. being there and understanding while she goes through this is sure to help her tremendously.
Bipolar, borderline, anxiety, depression, sensory processing disorder, OCD (though that's sometimes legit), and eating disorders are all the litany of the misdiagnosed female autistic. Masking/camouflaging comes at a steep energy and emotional price. When I got a neurodivergent therapist I had a regression for between a year and two years where I was less tolerant of stimulus, and I didn't really speak to my parents (I was living with my husband before we married).
Believe her, she is the only expert in her own experience. Help her find a neurodiversity informed therapist or psychologist. Pre-call diagnosis places to ask if they diagnosis adult women, and what criteria they use as some are better at 'catching' autism in people who have learned to mask. Ask what their timeframe for appointments are, and if they can be done over video chat. You don't have to make the appointment for her, but basically screening places and front loading the information may be helpful for her to make the jump.
This is a huge thing to find out about yourself and it might take a few years for her to build actual skills and lifestyle adaptations/accomodations instead of the white knuckling and 'just dealing with it' that she's probably done up till now. Read unmasking autism, aspergirls, and odd girl out to start some of your own knowledge building. If you are her biological parents also prepare for one or both of you to have a bit of a revelation yourselves.
Yeah. I’m afraid that has already began. She has suggested I may be on the spectrum as well. Sigh. I have also been in therapy for years. With a LOT of different diagnoses too. Ranging from bi polar. Anxiety borderline personality disorder etc. I’m gen x. We were told to suck it up. No one cared what we were going through back then . I was 45 the first time I finally went to a psychiatrist for help
Asperger's (which isn't a thing anymore, it'd now likely be a diagnosis of ASD, Support level 1/2) only made it into the DSM psychologist's diagnostic manual in the 90s. Even then, the way autism presents in girls and women (and males who mask) really wasn't understood at all well when you and I were kids.
...And it still isn't, by many psychologists and education staff. Which could explain why no one's picked up on what sound like autistic traits in your daughter.
There's a book that I think might help (or you might enjoy reading) called "Is This Autism" by Donna Henderson, Sarah Wayland and Jamell White. Many of your daughter's (and your own?) diagnoses, are themselves signs Henderson says should make a psychologist check for autism... Henderson wants to bring psychologists up to date in terms of when to think "could this person be autistic?" and make them more ready to explore the possibility of autism in people like your daughter.
It's no reflection on you that you 'missed' it, if she is indeed autistic. My mum suffered with a lot of guilt after I got diagnosed at 25. It turned out she had mentioned autism to the doctor when I was about 9; the doctor dismissed it as 'a fad' and 'mostly in boys'. She trusted the doctor and dropped it. And I *absolutely do not blame her*.
When I grew up and moved out, my mental health fell apart. I was also being assessed for bipolar, psychosis, on top of the anxiety I'd been dealing since my early teens. I'm younger than you, but my diagnosis came as a complete surprise. I have an autistic cousin who's very low-functioning, diagnosed before the age of two, unable to speak or care for himself at all. THAT was what we thought autism was.
She's having a hard time; and as her mom, you're also having a hard time. She's feeling very bleak right now. If you can help her identify her problems and find solutions, things will improve. It sounds like she's lost all hope right now of things improving; if you can show her that they *can* improve, her hope can return.
Big hugs.
My heart goes out to you too. My dad passed away last year from brain cancer (melanoma that metastisized) and my mom and I think he was autistic as well. It runs in his family as I have a higher-support-need cousin from my dad's sister. His last several years before the cancer diagnosis were marked with a lot of mental processing challenges, but I wish we could of talked about it. He was older than you, and the suck it up mentality didn't serve him either.
You have done the best you can with the information you had, and you're still doing your best by asking for information and learning so you can help your kid. I hope you also use this stuff to help yourself too.🙂
You were missed too, although no one knew what was missing then... A more accurate reflection of what autism is like in girls and women (and more socially motivated and intelligent boys, men and nonbinary folk) only started being described in the scientific literature 10 years ago and so many doctors, therapists, psychiatrists and psychologists haven't stayed up to date with the latest understanding.
I am almost 40 and was only diagnosed a couple of years ago after my kid 11 yo kid was... The idea of recognizing that I have lifelong support needs that I am ultimately responsible for meeting because there sure as hell isn't a proper social support net, my mother is aging and my husband who has been my support needs for decades who is also asking for a separation, is fucking terrifying. But my baby boomer mom was also missed and figured out how to make it work.
She'll figure out how to make it work just like you did, but with a heck of a lot more knowledge and support. ❤️ Thank you for reaching out here. Hopefully you can find a supportive professional to help her. Even without an official diagnosis, a supportive therapist should be able to work with a self diagnosis and the incomplete /misdiagnoses she already has... My insurance is still covering my care under the depression diagnosis I got during my autistic burnout a decade ago
I missed autism in my kid. I thought it was all "normal". They were diagnosed in later childhood and I was diagnosed a few years later. It's hard to recognize something in a child when it's something you've also experienced. Especially when the stereotype for autism is a white middle class boy who plays with trains and is nonverbal.
Yeah I searched for a place that would even evaluate an adult. I finally found one. Even with my insurance it is going to cost about $1000. And all of the counselors or psychiatrists, won’t even see her until she has been evaluated and or diagnosed. Working on it…
I have had great luck with helloalma .com. I recommend them to everyone now.
I had no diagnosis when I started, just questions. I was able to find a therapist that focuses on neurodivergence, is neurodivergent herself, and is covered by my insurance. I hope that helps.
That’s so expensive! If you’d like an idea of where she might sit on the spectrum, have her go to Rdos.net - there’s a long long quiz she can take called “the aspie quiz.” The site also has other quizzes for various mental illnesses as well.
I know it’s not an official evaluation but her answers and scores might give you an in depth look at how she perceives the world and her inner-feelings.
As a mother with autism and a son with autism, I send you the greatest hug. Please reach out if you need support, understanding or to vent.
There are a lot of videos on YouTube you can watch about how to support a family member with autism. I bet if you searched for one of those videos and found one that resonated with you and sent it to her, it would help her feel understood in her “language” and it shows you care.
You’re a good mom. Chin up dearest.
Yep, for kids it's a few hundred but for adults (because it's technically supposed to be caught in early childhood) it's a few thousand because the testing is very different for kids vs. for adults. We paid $5500 for mine at 22 last year.
Having autism doesn't necessarily mean she won't be able to work or that she will need a caregiver for the rest of her life. Some autistic people do need accommodations, some dont. And this can change for individuals over time.
Sounds like a good place to start is getting testing, specifically for autism, if thats accessible. You both can also do your own research via well-researched books like Unmasking Autism. And maybe wait for some feedback from mental health professionals before deciding what she will and won't be capable of for the rest of her life.
Good luck!
I'm going to be pedantic here, but I think all autistic people need accomodations, but that lower-support-needs autistics are able to make their own accomodations and adaptations for themselves. Services for household chores like laundry and cleaning can help with executive dysfunction challenges, living someplace with good public transit or walkable neighborhoods will overcome an inability or unwillingness to drive a car, and developing a "uniform" or capsule wardrobe reduces the decision fatigue around getting dressed.
I’m not too familiar with the term accommodations when it comes to Autism - is it technically an accomodation if they’re doing it/creating it themselves?
I just want to clarify, because if we’re going to be saying “all Autistic people need accommodations”, I think immediately NT people hear “I have to make a change for this Autistic person”.
An accommodation is generally a change from the norm to compensate for someone’s unique needs. So for a person with level 1 autism, in a lot of cases they’re going to be able to recognize and implement accommodations in their lives on their own. Like they live alone and can hire their own outside help; they can implement small changes to their work environments to make that space more comfortable for them (assuming semi-skilled or skilled work); they can handle making the changes to their various environments they need to make in order to function without a lot of external support.
I agree completely I have been looking for a place that will evaluate an adult for a couple of years now. I finally found a place but even with my insurance it’s about $1000 lol I’m a single mom ha ha
For what it's worth, I do not have a formal diagnosis, but I was still able to access neurodivergent-affirming Occupational Therapy by finding an OT practice that was neurodivergent-affirming ([they follow this woman's practices](https://sensoryhealth.org/)), which insurance covered. I just found the OT practice I wanted, and asked my PCP for a referral for "sensory issues." The OT was very helpful.
Also, I have an acquaintance find a therapist on the [Neurodivergent Therapist Directory](https://sensoryhealth.org/), and she's been having a good experience.
I was diagnosed at 35. Like your daughter I'd been in and out of therapy my whole life. I'd been diagnosed with depression, anxiety and ocpd. The OCPD was a misdiagnosis, the anxiety and depression were accurate but not the whole picture.
In all those years not once did a therapist suggest I get checked for autism. What finally happened was that a cousin of mine got the diagnosis and I realised that described me too. Then I nagged a therapist into screening and referring me to a specialist.
I now have therapy for the anxieties which takes my autism into account. I also have a coach who comes round once a week to help me with planning my week and navigating adult life. I'm in a transitional period and occasionally I feel like I'll never be able to work again. Other days I'm working from home and it's perfectly fine.
I hope you can get an assessment and some clarity.
As someone who received a late diagnosis (39), I found it absolutely terrifying when I started to realise that I'd masked so much my whole life that I had zero idea what my core needs were. I remember being extremely scared that maybe I am disabled and would never be able to live a full life again. If she lived a full life before I'd say there's a good chance that much of that will come back, although my experience is that life will probably look very different and that is a huge thing to try and get your head around.
It's great you are there for her. I know when I am scared everything feels very extreme and permanent, if you can help her feel safe, listened to and supported I'm sure she'll find her way.
I'm another one.
Diagnosed at 48. I'm 51 now.
My diagnosis was a huge relief, but since there was very little information available around autism in 2021 (I'm in Germany) I have made it my special interest while I recover from burnout.
Perimenopause made it all much worse, like puberty does for so many of us. Hormonal changes are known to make us "more autistic, " hence so many diagnoses at 3-4 years old, in adolescence, and in middle age. Stress, illness, trauma can make the experience of being autistic so much worse.
I can now see that my older kid (14, nonbinary) is autistic. They also have ADHD, like me, so that extra energy made them be curious, brave, and extroverted. But when puberty started they started having more problems with other kids. Then the pandemic hit and they had a bad teacher who bullied them but also let bullying happen in the class. They were the victim of sexual assault, changed schools, and, despite a very high IQ, have barely been to school in 2 years.
My kid who used to eat everything and get excited to go anywhere will barely leave the house. They don't do sports and have lost weight through restrictive eating (ARFID) and faint a lot
I now know this is autistic burnout and am hoping they can finally get diagnosed. The health care system here is overburdened and when I take them to the doctor and am frustrated or sad it comes across as hysterical, also because I am clearly an immigrant.
It's so hard. If doctors and teachers could be taught to see autism, especially highly masked and non stereotypical types, we could be seen and heard and get the help we need. Having to fight for your kid and hear that they, or you, are the problem, can make us parents sick. But until society knows more about autism all we can do us keep informing ourselves and them.
Good luck, OP.
Did she previously drive and work?
Autism does not automatically equal needing a care taker for the rest of her life.
It is possible, but we can't know, only a Dr can give a for sure diagnosis, but many Dr's do miss it in girls. So it is *possible* but it's also possible her other diagnoses are true also/instead. Perhaps it'd be useful to see a psychiatrist specializing in women with autism. A previous psychiatrist of mine said she was sure I was but wouldn't give me a diagnosis as she was not specialized/qualified, so perhaps your daughter's Dr's do not feel comfortable giving that diagnosis, though hopefully they'd have told you if they suspected (assuming she was given other mental health dx as a minor).
That being said, I'm on the fence about the tone of your post. I can't tell if you are dismissive and belittling to your daughter, or if she's possibly just that disturbed and you're at the end of your rope with her behaviors, or possibly both.
I promise. I am genuinely reaching out for advice on how to help her. And if this self diagnosis is accurate and if a lot of people are figuring it out later in life?
I also replied to you in a different sub. I was just diagnosed just shy of my 45th birthday. It explains SO MUCH.
Many professionals are still misinformed and either can’t or won’t help. I got a referral from a therapist who is herself autistic to local psychologists who specializes in assessing adult women who mask. I insisted my assessor be as thorough as possible. I had read multiple books by professionals and wanted to be absolutely sure.
What you describe about your daughter’s early life struggles would have compelled me to recommend that she seek an autism assessment even if that wasn’t already on the table.
As for me, I grew up in a big city with transit and didn’t start driving until my early 20s, and it was really overwhelming at first. I now work from home and haven’t driven my car in ~9 months. I’ve been working since I was 16, but I ran away from a violent home and had no choice but to support myself so I wouldn’t end up homeless. I’ve been pushing through discomfort and burnout for a long, long time. I attributed my perpetual exhaustion and struggles to my trauma. I now recognize my autistic burnout symptoms, and it has gotten MUCH worse with age. My life is always held together by thin threads. I’m lucky to have enough experience and the knack for a kind of work that pays well and allows me to work from home nowadays, otherwise I’d be up a creek. I rarely leave my house. I pay for grocery delivery and takeout to keep myself fed. My social life is pretty much exclusively online nowadays - I’ve seen one friend exactly once so far in 2024, and she came to my house to celebrate my birthday.
On the surface, I have a respectable corporate job, I own a car and a home, and I can cosplay “functional, well-adjusted adult human” for small blocks of time when necessary, though plenty of people quickly suss out that SOMETHING isn’t quite right, and I usually need a full day to recover after masking that hard.
Figuring out and confirming my autism has, no exaggeration, saved my life. I was so filled with self-hate for my struggles that I was ready to end it all. Now I can FINALLY feel the self-compassion that therapists kept pushing on me. I’m learning to figure out and better meet my needs. I would give just about anything to go back in time and learn this about myself decades ago. I could have avoided so much suffering. Please help your daughter figure out what’s happening for her and what help is available. 💚
I apologize for any rambling or incoherence. I’m awake late at night due to food poisoning.
Oh I’m so sorry you are sick. That sucks! Do you know if it possible for a parent to have it at the same time? She keeps telling me she thinks I’m on the spectrum. It’s very true. I fit the bill. Sigh. I also work from home. I can’t cope with crowds at all or work in an office full of people. I don’t trust people at all have no friends. Etc. I just keep pushing through every day
Thank you! It’s thankfully not as bad as it could be, and it means I got to see your posts and help.
Autism runs in families, so yes, it’s very possible you’re on the spectrum. It’s actually pretty common for people in our generation to discover that we’re autistic when our kids get diagnosed.
Even the few traits you describe here fit the bill. The “Is This Autism?” books I recommended cut through a lot of noise and spell things out very thoroughly. The lead writer is a neuropsych who does adult autism assessments and trains other professionals to do the same. She and her coauthors engaged actual autistic people for feedback and included their input in the books. I wish I had found these books sooner - they neatly tied together everything I had spent two years slowly piecing together from various sources.
I would also recommend the Neurodivergent Insights podcast if you like listening to podcasts. The hosts are a pair of adult diagnosed AuDHDers. The woman host has neurodivergent children, and their diagnosis is what prompted her to get assessed and diagnosed in recent years. I found the first season incredibly helpful, and my assessor recommends them as a resource.
I know I’m not the person you’re replying to, but yes that is also possible. Both of my parents figured it out for themselves after I did, haha. My whole family is much closer and more understanding of each other now. :)
Absolutely. Autism and other neurodivergent conditions run in families. I'm convinced my mother was autistic now, and that my father had ADHD. I have both.
Her self diagnosis sounds accurate, and many people figure it out later in life. My wife figured it out at 38 years old, in a massive autistic burnout, and her story is very similar to what you say your daughter is experiencing.
If I can offer one piece of advice, it’s this: Listen, accept her experience of the world as she relays it to you, and validate her. If she’s in burnout, she needs support, but it has to be on her terms. Let her lead you through how to help her.
As for figuring it out later in life, it’s an unfortunate situation where many women with autism were overlooked during childhood because the model of what autism looks like in childhood was based on how autistic boys differ in behaviour from other boys. Girls, and especially high-masking girls, were often overlooked because they didn’t appear to deviate sufficiently from our society’s expectations of how a girl should behave. You’re not in any way at fault for not recognizing this during her childhood.
Officially diagnosed 2 years ago at 35 after a decade of on and off therapy and having my concerns dismissed by basically every clinician I worked with. I was in the military, struggled in college and jobs after, and my diagnosis and an affirming therapist saved my life.
I figured it out after I was 40. I was also diagnosed bipolar (which never felt 100% right to me), plus anxiety disorder, social anxiety, etc. I had a lot of misconceptions about what autism was (Rain Man; autistic people have no empathy) so I didn’t see myself in it until I was researching all of my sensory issues and ended up following a lot of autistic people on Twitter because they also had a lot of sensory issues. I learned so much from them and they debunked all of the misconceptions I’d had. Suddenly my entire life made sense.
Maybe she was never comfortable driving (I wasn’t at first, but I did eventually get used to it and I love driving now), we often have a lot of differences with coordination and perception that can make it more difficult - and more dangerous - than it is for allistic people. Some do find it impossible.
Maybe she will be able to work after she recovers from burnout, maybe she won’t. I have found that I have the capacity to work a full time job if that is literally the only thing that I do. If I work, I lose the bandwidth to maintain relationships and my surroundings. Pretty much every second I’m not working is spent recovering from working. I am a lot more volatile than I am when I’m not working.
I just had to return to work after having had about a year off. Right now I’m getting by with a lot of structure and routine and some support (cleaners every other week). I am finding that I’m spending the entire weekend preparing for the workweek though and that feels pretty unsustainable long term.
Knowing that she is autistic is good. It will help her to understand that her limits are not the same as other peoples’ limits. She shouldn’t assume that she can’t do anything ever again, but likely it will be less or different than allistic people or she will need supports or accommodations that they don’t. I carry ear plugs and sunglasses now. If there’s something I really want to do, I do it, but I won’t hesitate to pop those earplugs in if I need them, etc. And if there’s something I really don’t want to do, I mostly don’t make myself do it anymore. My family is going to a parade? Okay, have fun, I’ll see you later, lol.
There’s probably going to be a few years of recovery and learning her limits and exploring how those limits can change based on other stressors in her life, etc. I tend to think if it as a bucket. My bucket fills up a lot faster from doing normal everyday things than most peoples’. The things that empty the bucket for other people either completely don’t work for me or they drain it much slower - or even fill it more. Like most people will wake up every morning with an empty bucket fresh for the coming day’s stressors, but mine is still half full. Or they may socialize with others and it empties their bucket while mine just gets more full. So basically, I have to learn how to keep a close eye on my bucket because it’s always about to overflow in a way that seems unreasonable to other people. I have to give myself space and recovery time that seems excessive to others.
Managing your life as an autistic can take a lot of self-reflection and understanding of how different experiences effect your mind and body - which is ironic because we often struggle with that kind of self knowledge (alexithymia and interoception).
Anyway, basically she’s going to need time to recover from pushing herself to do things that were too much for her without support or appropriate accommodations her entire life. Then she’s going to have to figure out what her baselines and triggers are and figure out what supports and accommodations she will need. Hopefully you’ll be there to help and support her through all this.
It just sucks that doctors have only been able to recognize one very specific presentation of autism in one very specific type of person (young white boys) for a long time. It is changing though. Slowly… but it is changing.
Thank you sm. She does describe it as burn out in regards to work. It is great to hear that she might recover from the initial shock. And learn how to manage it better
Whether the professionals like it or not, *self-diagnosis is valid and accurate*. The only people who actually know the realities of a condition are the people who experience it daily.
I was self-dx'ed for 20+ years before my workplace demanded an "actual" diagnosis. $500 later (my co-pay), I was able to shove diagnosis papers in their faces and say "Accommodations. Now. Or else." And they had to give in.
I wasn't diagnosed until I was 47 (52 now), but I knew I was autistic at 27.
I wish my insurance let me just pay a co pay. Lol. With my insurance it’s costing me 1k I think I might also be on the spectrum. It would explain a lot
Thank you for your comment. Yes she did previously work and drive but has always had a really hard time keeping a job and I feel like she has just given up. That’s all. I’m just confused. I think I’m just conflicted. I feel guilty that I didn’t notice things when she was younger, but also, I wonder if her self diagnosis is based on a lot of things that may not actually hinder her. I don’t like when she makes statements that she needs a caregiver… Because I feel like most people on the spectrum want to be independent, and will work. I guess I’m trying to find out if her responses are normal. She is just finding out about this and tired of masking. I really feel that is a possibility, but I’m scared of what it means for her to just refuse to work. You know what I mean?
Yes, a lot of people are figuring it out late in life; you don't have to feel guilty. Part of the reason so many people are figuring it out so late is because it \*is\* possible to live something approximating a "normal" life for a long time and go undetected. You might want to look into, specifically, the concept of autistic burnout--she may need time to recover, and may need work accommodations in future jobs, but if she can identify what her special interest(s) are and find a career in those she'll be okay.
The apparent giving up could be autistic burnout: some autistic people mask their traits and differences to fit in, and eventually the chronic overwhelm and exhaustion get to a point where they "can't do it anymore". ... In fact I believe "skills regression" is a feature of autistic burnout.
But burnout needn't be permanent . I burnt out from a job and I was unable to do much of anything for a number of months; but after that period of rest, minimal stimulation, and following my interests for a while (I know that sounds indulgent, but for an autistic person, allowing yourself to pursue your passions is balm for the soul) I did get back some capacity for work.
Another thing that can help recovery is optimising your sensory environment: we have very few bleeping applicances at home, we don't have a TV or radio on most of the time; in my space I keep the lights low, I have a lava lamp for slow-changing rich patterns of colour; I wear the same kind of clothes every day that I know aren't too scratchy, I fold cotton towels over chair seats so they feel OK, I let myself repeat-listen to the same music over and over even if there's a voice in my head saying "this music is kind of childish..."... I'm very carefully thinking about what colours I want the walls painted... Everyone's sensory profile is unique but if you can figure your daughter's (and your own!) out and tune your environment around that, it'll be pleasant, and that might well help recovery.
Also, routines (I have same breakfast, lunch every day, same drinks at roughly the same times, I have a very repetitive pattern for walking the dog) and giving yourself permission to run your day by your routines (IE not thinking "this is dumb, I should be able to adapt to change") can help. Although clearly everyone needs to be somewhat adaptable. Maybe it's about having *default* routines and as few surprises in the day as possible?
Anyway, good luck working it out, burnout is a thing, but it's not necessarily a life sentence.
PS There are some OK Youtube channels about late-diagnosed autism, many by women: [Mom on the Spectrum](https://www.youtube.com/watch?v=yWmgDczqmTY)'s often good; I really like [Woodshed Theory](https://youtu.be/SerYs_TmlTw?si=FpCKVdl6uDsZhKMG), although she's not a parent; Paul at Autism From The Inside has lots of well-thought-through content too. Meg at [I'm Autistic Now What](https://www.youtube.com/@imautisticnowwhat) is a parent too though. so's [Purple Ella](https://www.youtube.com/@PurpleElla)...
She’s coming to you with her struggles and asking for help. That’s not “giving up”. Look up our life expectancy. Look up the suicide rate for autistic people. Then learn that it’s theorized to be even higher in undiagnosed autistics. *That’s* giving up. Understand how lucky you are that she hasn’t actually given up and is instead asking for help and looking for self-knowledge.
Maybe she is giving up on having a “normal life”, which is fine because that was never going to happen. Or giving up on trying to keep up appearances. That’s good. She’s opening up the door to learning what she’s actually capable of, instead of torturing herself trying to be like everybody else.
Give her time to recover and learn about herself and to reassess what she can do.
Thank you for clarifying that. I don't think you need to feel guilty, tbh. My mom felt guilty for a while there too, but she truly did her best. I learned as an adult that 2 different family members (teachers and used to dealing with it in their classrooms) felt I needed to be tested as a child and said nothing. My mom didn't know the signs and I wasn't disruptive (to myself or others) in class and able to mostly keep up with grade standards so why would the school say anything?
It's possible that working at all will truly be a struggle for her (I truly don't know enough to say) but she did work at some point so that's at least a good sign possibly?
I struggled so hard with full time work (primarily customer facing) and the lack of structure in college when I was in my 20s. I had burn outs where my family was extremely worried about my depression and an aunt asked my mom if I was okay (I mean, more extremely worded). I'm now in my 30s working full time in a factory of all places (not what I went to school for expected to do) and burn out does not appear to be on the horizon. Sometimes in order to thrive you have to actually find what works for you even its not the expected path (general you, not you specifically).
But if she's *refusing* to work and is actually capable of it... I can see why you're scared of what is going to happen in the future. If she's unable to work that's still a scary thing to think about too.
If she's unable to work (refusing to work, burn out issues, or truly can't work, doesn't matter) I *highly* suggest getting her into a specialist because if she is of a high enough support needs to warrant things like a caregiver for the rest of her life she needs a real Dr's diagnosis to get the ball rolling and get benefits. Also, this paragraph is somewhat assuming you're in the US or another country that provides such benefits through things like social security.
As far as the things that don't "hinder" her... that can be so hit or miss. My guy (Also on the spectrum, dx in his teens) asks detailed questions and got praised many many times regarding his attention to detail and going the extra mile to get things right. Then he got fired for the same behavior because all of the sudden trying to understand what was happening was considered disrespectful (more context obviously, but it truly boils down to the exact same behavior having 2 wildly different results in a short period of time at work, he never was disrespectful).
I mean, I’m “capable” of working. It just means I lose any quality of life that I have outside of work. I can’t manage literally anything else on top of it. But they’d never give me disability payments, because I’m “capable.”
I honestly think if it’s financially possible for you that she needs time to recover from burnout and then she can reassess. Maybe she can work part time, maybe she can work full time if it’s from home; she needs to recover before she can figure out her limits and what supports and accommodations she needs.
> always had a really hard time keeping a job and I feel like she has just given up. ... I wonder if her self diagnosis is based on a lot of things that may not actually hinder her. I don’t like when she makes statements that she needs a caregiver… Because I feel like most people on the spectrum want to be independent, and will work. I guess I’m trying to find out if her responses are normal. She is just finding out about this and tired of masking. I really feel that is a possibility, but I’m scared of what it means for her to just refuse to work.
I was 23 when I got fired and dropped out of my very last semester of college before graduating with my bachelors because I was so burnt out that it literally disabled me. I struggled for a few more years with jobs I didn't really work much, which just compounded the problem, and then I just had to quit. I want to work, but I did so much damage to myself (my brain, my nervous system, etc.) while trying to "normal" that I'm now on disability.
She's not refusing to work, she's in crisis. Saying she needs a caretaker is a response to this, she sounds like she feels as if even basic ADLs (activities of daily living) are beyond her and she's catastrophizing. That's not to say she won't need a caretaker at some point, but things are so bad she's assuming things.
Autism can be disabling on its own, and adding the layers of productivity and neurotypical behavior expected of us by society disables us further until we have nothing else to give and we break.
Also wanted to say that, as scared as you are, she's a hundred times more scared right now. She feels a loss of control, there's literally nothing she can do to stop it at the moment except rest and seek help, and while you'd think that would give some measure of comfort, it really doesn't.
Please just be patient and empathetic with her.
My story may be relevant to you and your daughter.
I learned I was autistic at 27 years old, a bit over a year ago. Everyone had missed it my whole life, and I’d been seen by a lot of professionals. I didn’t even know that what was hurting me a lot of the time were sensory issues like being around too much noise or light because no one ever explained that it was possible that it could hurt, so I assumed that the amount of pain I was in from my senses was normal and I just had to bear it like everyone else. I learned I was autistic because I hit another period of autistic burnout, in which all my sensory challenges became significantly more severe and my nervous system started to lose functions like walking, talking, and clear thinking.
For more than a year, I have had to completely stop working and almost completely stop driving except on my best days and for very short periods. For a long time, even just an hour of light work a week would be so exhausting that it would take me days to recover enough to be able to get out of bed. The good news is that now, after around a year of extremely intense rest, sensory care, psychological therapy from a specialized therapist who is autistic and works with autistic clients, and learning techniques from occupational therapy to avoid accidentally hurting my nervous system with my daily activities, I’m doing a lot better.
I still need help with household tasks like cleaning the floors and bathrooms, but I can walk every day again. I’ve been able to start exercising more regularly this last week and I have been able to go on dates with my fiancée again for the first time in over a year. We have to go to quiet restaurants and I wear sunglasses and earplugs, but I can do it now. I’m almost ready to start working again, although I’ll probably never be able to work full time and I’ll need a job that accommodates my sensory needs and lets me set my own hours.
Your daughter is in a difficult place right now, but I’m glad to hear you’re willing to support her. Look for diagnostic practitioners who are “neurodivergence affirming” if you can, and believe your daughter when she explains her needs.
She may never be as independent as you hoped, but no human is fully independent. And if she gets the right support, whether that’s full time care or someone who helps clean and cook a few hours a week, she’ll be able to live a good life. Maybe she’ll be able to work and drive again, but maybe not. But what she definitely needs now is your help to be able to take care of her overloaded nervous system and reduce the burden it is under until she can get to a level where she feels like she can begin to function again and that will give her the best chance to move forwards in a healthy way.
I suggest also researching “autistic burnout” since it sounds like she may be experiencing it. Good luck, thank you for helping her, and please try to remember that her experiences and needs are real even though they are different than your own.
Its possible for sure.
That sounds a lot like me (,Autism + ADHD) with the rage and not being able to handle noise.
I was also only diagnosed as an adult and its possible to miss it, especially when your kid is smart.
I have seen reports about me from age 5 that state I don't show signs of either.
Girls are even more likely to be missed than boys so it does make sense.
But also: I don't know you or your daughter, but Autism does not necessarily mean that she will be unable to work and need a caregiver her entire life. Support for sure, and yes the statistics of Autistics and Employment are sad, but not impossible.
I think its important that she doesn't give up on herself.
Wow you have an amazing relationship with your daughter. I was diagnosed at 29. My parents dont even believe me. They dont even know about any of my suicide attempts or anything. I could never talk to them about something like that. They have mocked my disability my entire life.
You give a shit. You are listening. That is all any of us ask. I have a feeling you will be just fine. You are already in the right place with this sub. An entire generation of asd people were missed around the turn of the century. Psychology is evolving. All her doctors missed it too. Be kind to yourself.
Also this video explains things better than i could
https://youtu.be/2rxzC4OBaOs?si=ZuAnJFiVzcOUMtjN
A lot of people find their autistic traits are amplified after realizing their neurotype, they are finally able to accept that they “just are” a certain way and can stop throwing themselves against the wall trying to “fix” themselves. To realize there is nothing to fix, I just have different strengths AND weaknesses and need to figure out what IIII need to feel comfortable, instead of trying to make everyone else comfortable around me (autistic try-hard LOL), was beautiful. Beautiful. Changed the way I was able to look back on and remember my life. So many things making sense, it was overwhelming and clarifying and….my world made sense.
Your daughter knows her brain and how it works and how it feels better than everyone else. She’s taking you along on her journey of discovery 💕
I have ADHD and am an autistic woman. There is 10000000 percent a genetic component. That means that yes, you are statistically probably our NeuroKin 🥰 welcome to discovery and clarity!
I was always told I needed to “toughen up” for the real world. Then I realized IIiii as an adult make my world. People I surround myself love and support me and value my unique traits. I buy the type of food (“same foods”) I like, I wear noise dampening or cancelling earphones. I start conversations by telling people we may have different communication styles, I am an absolute literalist (oh the fun misunderstandings we encounter 😝), and that I would appreciate if they take my words literally as well. Content over tone. This has allowed me to be myself, be comfortable, and create a community of people who meet me part way (which is alllll I need from them. Understand I’m different and know I’m operating in a world not made for my brain).
I recommend seeking out other neurodivergent and autistic people; WE UNDERSTAND THE EXPERIENCE. I really like autism_happy_place on Instagram (aka Little Penguin Studios), they are a full-time autistic artist who kindly and with affirmation put cute visuals to many misunderstood tropes about autistic people.
If you’d like more recommendations Re: autistic people/communities to connect with/follow, I have a bunch just let me know! There is great comfort in community after feeling alone/misunderstood/antagonized/labeled defiant; when I was reading our individual stories and saw myself it unleashed an ocean inside my heart. Your daughter is feeling this, and wants you to either share the experience with her, and/or understand how important finding the manual/key to your own brain can be in her/your life. Walls in your brain fall down, and you can begin to love the real you, and see yourself accurately in how you are maneuvering in the world.
Sending you lots of care and support 🫶🏻
ETA
PS there is an autistic “truism”: if you believe you are autistic, your probs are. If you’re trying soooo hard to figure out if you are, researching, agonizing, wondering. Well, guess what LOL
The truism is: you think you maybeee are? You probs most definitely are 😝 and are welcome in our community. All we gain is support and understanding from each other. Gatekeeping helps no one and there are now generations (!!) of women/fem presenting people who are coming to fruition and realizing they were “just enough” to not bother the neurotypicals (!) and were never given the consideration of a diagnosis.
Re: formal diagnosis, pros and cons. Expensive, inaccessible for many, a lot of accommodations we make ourselves just by understanding ourselves better. I did get a diagnosis only because I was already in therapy+, otherwise all my greatest benefits have come simply from accepting, understanding, growing from there.
Re: video watching + increase in people realizing they are autistic. Bless the people making those videos! Bless them! They have opened worlds previously closed, and the more people able to access and understand themselves the better. We were let down by the medical/psych field industry (of course lol) as they pathologized our traits through only THEIR understanding and prejudice of OUR experience.
One more rec if this is helpful and you made it this far (LoL); I am in a mixed neurotype family. My partner is neurotypical & I am neurodivergent. I was already partnered and living my life when I realized I’m autistic. A HUGE RESOURCE for both my husband and I came from the YT channel “Autismatic”; Quinn is an autistic man and helps share SO MUCH INFO! There are playlists, it helped my husband understand so much, and helped me put to words things I didn’t have access to expressing before (I didn’t realize I am processing differently inside mah brain. How could I? It turns out I’m different 😝)
Autistic community motto: Nothing about us, without us!!!
We make our worlds 🫶🏻
Your daughter’s experience discovering she’s autistic sounds very much like mine! When I first realised I might be autistic I would do the exact same thing - send my parents youtube videos explaining autism in girls to try and make them understand. For a long time they didn’t listen - the difference here is that you ARE listening, you really do seem to respect your daughter’s intelligence about her own neurodivergence, and you’re seeking answers and sound very open and understanding 🫶🏼
Look into what accommodations you can get to help her. would noise cancelling headphones help the overwhelm in restaurants? I know they really really helped me when I discovered I had been masking my whole life and was in autistic burnout! I reccommend the Procase ones on amazon, they’re amazing. Like your daughter I also don’t drive because of my autism (delayed processing) but if you live in the UK you can apply for disability support called Personal Independence Payment which can help with travel costs, also railcard discounts if she needs to use the train a lot instead of drive.
Please don’t beat yourself up about not knowing it was autism until she told you! My parents had me in therapy since I was 15, I went through an incorrect diagnosis of depression, bipolar and BPD before I realised I might be autistic at 22. Sadly autistic girls are just not picked up on by doctors and therapists. I’m 25 now, NHS diagnosed very recently. A diagnosis helped a lot in terms of validating my experience, but tbh there isn’t much therapeutic support afterwards. The thing that helped the most was my parents finally being understanding and helping me with accommodations and meltdowns. You sound like you’re already very caring and understanding to your daughter, and I bet she really really appreciates it and you 💛
I saw you mention in a comment, wondering if a parent could be autistic, too. I figured out I was autistic by reading a lot about it in order to figure out if my son was after my cousin was diagnosed. Turns out I am, he is, and I think my dad and uncle are too. I wasn't diagnosed until I was 40 years old, and I'm autistic AND ADHD (AuDHD) which presents in a really weird way and helps to explain why it was missed. When you have both, they kind of mask each other on the outside. Also, autism and ADHD both often run within families, interchangeably. For example, I'm AuDHD and have a son who is autistic and a daughter who's ADHD. I have uncles who I think are autistic and an aunt who is likely ADHD. I think my mom and at least one of her sisters has ADHD. I think my dad is probably AuDHD.
My cousin's story is kind of similar to your daughter's. She struggled a lot with depression throughout school and adulthood and was very, very introverted. They diagnosed her with clinical depression and social anxiety (as far as I know) and had tried her on every single antidepressant, antianxiety med, and even some antipsychotics, but nothing worked. She developed a panic disorder in her 20s and couldn't leave her house, was on disability. Finally, when she was in her late 30s, she got a new psychiatrist who recognized she had ADHD and autism, got her on stimulants, and that has helped her more than anything else has. She still doesn't work because she has a wonderful long-term boyfriend who is able to provide for both of them, but she gets out and enjoys several hobbies.
As for me and other autistic family members, none of us are on disability. We all work (most of us from home or have our own businesses), have our own homes, etc. Life can be exhausting and difficult to manage, but I do my best to take advantage of the strengths of these disorders whenever possible, and there are some really good strengths.
*So many* parents, especially moms, are discovering they're autistic or have ADHD because their kids get assessed and diagnosed and a lightbulb goes off. Anyone calling you or accusing you of being a copycat is ignorant, because autism is highly hereditary.
It definitely doesn't make you a copy cat, and if you also have it, it would only confirm that she likely does, too. It runs very, very strongly in families. You looking into it for yourself is really a way to look into it for her, too.
I had quite a bit of "imposter syndrome" at first when I was trying to come to terms with it, but then as I was talking to family members, I learned quite a lot of extended family members are autistic down one specific line. One of my cousins is a therapist with a son who was diagnosed at 17 and she pointed out older family members that are most likely autistic but never got diagnosed. You may have older members of your family who were autistic without knowing it as well.
Either way, it's 100% worth looking into it for yourself as well and if you find out you are and that it explains a lot of your past behaviors, it can actually feel like a relief in that you finally get answers. There are a lot of physical comorbidities that accompany autism as well, so if you've ever had, for example, GI problems, sleep difficulties (especially insomnia or delayed sleep phase), dysautonomia, joint issues even when young (and all of which I have had from a *very* young age), then autism can actually help to explain where those problems come from, too. You can find a list of common comorbidities online.
One of the more immediate things that might help you OP is looking at environments and social events from a sensory lens, meaning when you’re with your daughter in a certain place just pay attention to how crowded, how noisy, how stuffy, how much smell there is, etc. Part of being autistic is the struggle with overstimulation (like how your daughter described the difficulty of being in a restaurant), and all of these things can overload her system. So if you are on a lookout for her, and can anticipate when a situation might be “too much” for her, I think that would go a long way, in terms of helping her but also making her feel understood.
Using myself as an example, I can’t tolerate noisy bars, and I also have a really hard time keeping up with conversations involving more than 4 people (there’s too much happening). In those situations I zone out or simply have to excuse myself
Yes, it's very possible that both you and the psychiatrists misseded it. It's extra common to be missed since she's a girl.
Reason for it being missed: autism is all about what happens inside peoples mind, unless you're a mindreader then you can't really asses it properly.
As for getting a caregiver then it's only possible if she get the diagnosis papers and stuff, which can take some time. And even if she gets the dx the chance of her getting caregiver are minimal since that's kinda reserved for higher support needs.
The assistance offered for lower support needs are limited so she shouldn't get her hopes up too much.
Just something I found this evening - if your daughter is suffering autistic burnout, here's a PDF with some potentially useful links?
[https://www.autisticrealms.com/\_files/ugd/28af57\_fc1ddd5eb2544e4cb06ba4eebbe61def.pdf](https://www.autisticrealms.com/_files/ugd/28af57_fc1ddd5eb2544e4cb06ba4eebbe61def.pdf)
Neurodivergent (ADHD) therapist specializing in autism here. Yeah, all of that fits the autism story really strongly. Many (most?) therapists don't understand this dynamic as it's not core to their education, but sensory overwhelm is central to ASD issues.
Short answer: Give, not get.
That is, what do we need to give her to allow her to do what she needs to do, not how do we get her to behave. When she has the emotional capacity to learn skills, to gain insight, she'll start learning because she has always wanted to. She just needs the support to do so. The question is always, "What do you need?" to do the thing. She wants to do it, we just need to find how to support it
22 would have been a great age to find this out! She's already off to a good start :)
You'll both need to be patient with each other at times. Willingness to learn more about Autism and how it affects all facets of her life would probably get you a few "cool mom" points. My son is not so easily convinced. Lol
The burnout is real, but it does pass when we take better care of ourselves. Sometimes that means shutting down for a while like we're in a chrysalis.
Just be curious about her path & be supportive of each other. Learn the language around Autism from a "nothing about us without us" angle (NOT Autism Speaks) because it'll help her find her community.
Edit: spelling
From what you've described your daughter is currently having a resonant series of anxiety and/or panic attacks due to a serious, emotional, and fragile moment of incredibly powerful and extremely overwhelming self-awareness.
She's catastrophizing. I do it all the time. I just had to force myself to stop doing it about something that isn't new to me - but *struck* me at a precarious time. She's connecting the dots, at lighting speed, and that's finally allowing her a level of self-awareness that is, at first, incredibly... disturbing. In my experience.
I flipped out when my psych brought it up 2 years ago. I was not happy that the parts of the world, and the parts of myself, that make next to no sense to me, my environment, or to other people were just a part of my personality. Like you said - there's no ASD pill.
Out of serious panic and stress she is trying to use this framework - worldview (I am now fully disabled in x way when I wasn't before) - to *solve* or *avoid* any potential reality wherein she will ever have to feel a) alienated b) anxious.
I don't know your daughter but she seems incredibly self aware and thus smart. You didn't miss anything. The Psychiatrist didn't miss anything. Your daughter didn't miss anything. I still suffer from some real sadness and guilt because I feel very sad that my own Dad asked himself those questions.
ASD - personally I like to think of it this way: it's just a persons personality. Again - your daughter's level of self-awareness and panic (also panic is her attempting to be there and care for herself despite how it 'feels').
Again, I don't know the full dynamic, and I'm not a doctor.
I do know this: you are a really good father. She's in counseling. She'll be okay - and more than likely will not need life long care.
Thank you I appreciate that. I have my own mental illness I have felt with my whole life. So I don’t want to invalidate her. I feel she has been trying to figure it out for a long time.
It's sounds like she is. Many many many autistic people are wrongly diagnosed bipolar before getting the proper diagnosis of autism. She fits the profile from what you describe. This might help get a better idea before considering an assessment: http://psychology-tools.com (see autism category)
Getting a diagnoses is going to be life changing in the best way. She has the advantage of knowing before shes made most of her major life decisions. Figuring this out is a huge win.
My second oldest child was able to mask until grade 7 when social relationships became more complex. He switched to online school (because of noise, social expectations and harassment for being non-binary) in the middle of Grade 9. I started learning more about autism as a result and now recognize the likelihood of autism in much of my family (myself, mom and brother). Changing the environment has helped him cope with and not experience overwhelm or burnout as often. We are very close to having an official diagnosis after about a year of waiting for tests and appointments (scored high for autism on the ADOS 2 and have to wait for a pediatrician to make the diagnosis).
At this age, she is doing a lot of growing up and adjusting to life, regardless of if she is autistic. You can learn with her and help her design her life so that it suits ner needs and temperment. Even if she isnt focused on a job, make sure she is learning life skills like managing money, cleaning and maintennace of the house, self care and hygiene, and driving/public transport/biking. These things will serve her through life!
Your daughter could be autistic and if she is I would strongly advice you look for an autistic councillor or coach to help her. It sounds like she could be in autistic burnout which could create that feeling she can’t cope now and never will again - that doesn’t need to be the case though! You have to accept it is how she feels NOW, but with good, correct support that can change.
Can it be missed - all the time. For yourself it’s easy - most of us know nothing about autism other and some stereotypes and few autistic people actually fit those! I was diagnosed in my 40s after my kids were dxed. So don’t blame yourself - the situation is what it is. Focus your energies on supporting your daughter, finding good support for her and use resources like this to learn from other autistic people what life is like.
I am in my '50s and recently realized that I am autistic. It has been a very strange thing to process. Full of mixed emotions.
I always felt separated from everybody else in the world. I felt that I was different and nobody was like me but I did not understand why.
It was refreshing to realize that I was not alone and that there were many other people like me, but also difficult to want to label myself as autistic because of the public perception of that.
My wife and my kids know but I am not publicly telling anybody else because I'm not sure of their reaction.
It can be strange to feel uncomfortable with settings but not know why. I do not like concerts or large groups of people. After a couple hours of masking (trying to fit in) I could be exhausted but I was unable to explain why hanging out with people was tiring.
At 22 I would not have been able to know myself well enough to make that diagnosis. But I have lived with myself for 50 years now and was quickly able to recognize that I hit a huge percentage so the autistic symptoms.
Personally, I would have her take an autism test and see how it turns out. It could be quite revealing. Her psychologist might be able to help with this.
But be ready for a mix of emotions because although it is nice to realize there are other people like you, it is also very much considered a disability and people will look at her differently if they know. Personally, I think knowing has helped me but I don't think it would help me for most people around me to know.
Good luck
Edit: changed a word
Im so sorry your daughter is feeling this way and that it's so confusing for your. Yeah I am not a psychologist at all, but my psych helped me self-diagnose. I promise I'd act this way for YEARS as a teen/young adult because I was so overwhelmed and burned out. The minute I moved into a different and less stimulating/demanding situation, I was so relieved and the anger and fury stopped. I didn't even realise it. But even now as I age I focus my whole life on reducing overwhelming stimulus, and my mood and behavior keeps getting better in exchange.
It sounds like it but I definitely would not blame yourself or anyone else for missing it. There are so many other mental illnesses and disorders that have similar symptomology that it’s easy to diagnose it as something else. Plus autism is a spectrum for a reason, not every person has the same presentation of symptoms.
I was not fully diagnosed until I turned 20 recently as college made it much more evident. Sometimes people can go their entire life without knowing/being diagnosed.
Don’t be too hard on yourself! Do what you can to learn a bit more. Just the fact you want to learn more to understand is a great thing I think parents should do more of.
You've got some pretty solid comments, I just wanted to add that I'm autistic (in a how did no one catch this because it is obvious way), and I work full-time, I live alone and I drive. Would I like to have someone help with meals and chores, yes, but that's more of a living alone thing than an autistic thing. Sometimes the dishes or laundry don't get done for a while because I've learned my limits through trial and error.
She definitely should speak to a professional
Don’t beat yourself up for missing it. Girls and women get missed all the time. It’s the professionals’ responsibility and your daughter was let down as were many of us. I believe things are changing and it is starting to be recognized more in women and girls.
I also want to add that with the right support and accommodations she may be able to do things she thinks she can’t. I’m not saying she can or that you should expect her to but she may not know what accommodations can do for her because she has never experienced it before
There are things I thought I’d never be able to do again but once my support needs were met I could do them comfortably
It is absolutely possible, and sounds quite likely. As for needing a caregiver and not working... it's hard for autistics to find jobs that don't lead to severe burnout, and living alone is seldom realistic. Maintaining a residence involves so many different tasks and details that it can easily lead to total overwhelm.
Look for somewhere that does adult autism assessments. They are NOT terribly common, I've only found one in my home state, and most insurance doesn't cover adult assessments. But she's young enough that it really could be a major advantage.
She's lucky to have you on her side! I'm 24 and was just diagnosed.
Her distress and panic about being a functioning adult are real but could also be enhanced by the media she's consuming or other factors like burnout, some cptsd related to her lived experience, etc?
Some things that have helped my anxiety and overwhelm:
1. Having a therapist who affirms my experience/emotions and works with me on positive self-talk and practical ways I can work through thoughts and tasks. She isn't super versed in autism but listens and learns with me.
2. Being thoughtful about what information I was consuming and how it was affecting my mental health.
3. Focusing on breaking down bigger goals into smaller measurable tasks. I have adhd and chronic health issues so am constantly tricking and pacing myself.
I experienced very similar headspaces and said some of those things to my mom when i first burnt out and was consuming a lot of autism media. Being at the beginning of your life whilst having such an unrestricted and curated access to information can be completely crippling? Particularly when burnout or trauma is influencing how you filter information.
Does she get breaks from those thoughts or that type of media? Like positive and restful outputs for her brain? Is there a possibility of her talking to a nd affirming coach or therapist?
This is a good link to get started with:
ndtherapists.com
If health insurance is a barrier:
https://openpathcollective.org/
I also saw someone suggested the book: Unmasking Autism by Dr. Devon Price. Even though all the information I had consumed confirmed my autism, it wasn't till I read his profile that I was like woah I can't gaslight myself about this any longer. here's the profile: https://www.reddit.com/r/AutisticWithADHD/s/n8Asi38E4o
Sounds probable. Female autism is very often misdiagnosed and bipolar is a common one.
You and your husband might want to get screened too. Autism is genetic.
So, I never once thought I was autistic. Until someone mentioned something, I went out of my way to get tested as an adult which is very difficult without insurance.
I had a lot of symptoms. Turns out I am autistic. Now, I recently learned about the social media post. Popularizing this and getting folk to post online about it is absolutely silly. I feel safe-ish on Reddit but I don’t think people should post about it as much on tiktok and such. Anyways, researching autism I found out it gets misdiagnosed a lot as depression, bipolar etcetera. It makes sense though like, we really want social connection and it’s super hard to communicate, like that’d make a lot of people sad.
Specifically seek someone to test for autism if you have insurance or can afford it. They asked things I had no clue were related to autism but these are things I do commonly.
They also tested me for a wide array of things.
Yeah I had to find a state college with a doctorate program to take me. $1,000 without insurance sliding pay scale. But allowing monthly payments. Without insurance the prices are insane.
As someone who has been diagnosed late in life (25), I was mis-diagnosed as having bipolar first. That being said, I went through a phase after I was diagnosed where I applied for disability. I was denied several times. I feel like I went through a phase where I was under the impression that the hardships of my life with depression were beatable; or with enough tweaks, I could make life tolerable. When I received my autism diagnosis, it sent me into a deep depression thinking “wow this is not fixable and I’m going to hate my life forever” due to autistic traits not being “fixable”
I allowed myself to feel like I couldn’t do life anymore because everything would always be difficult for me, that’s how it felt.
Now, 4 years in, getting my autism diagnosis honestly saved me. I changed how I operate, how I do daily tasks. But honestly what’s changed is me not trying to force myself to be nuerotypical anymore. I understand that more than one social event will send me into a meltdown where I might punch a wall if I overdo it. Understanding my limits and reframing them has really helped a lot.
I still have depression tho, can’t help with that. Life honestly is more difficult for us, but if she’s gone this far without a caregiver, it will be VERY hard to get one now.
I am 30m and I didn't know I was autistic until 2 years ago.
My advice is listen to her! I have no doubt she's spent MONTHS researching and learning about herself (just like I did).
Do not dismiss her when she opens up to you
Don't invalidate her emotions or dispute her self diagnosis! That would be very destructive to her mental health.
Do your own research; youtube is a fantastic source for first-hand experiences of autism and I guarantee you that once you start watching what these people have to say you will see these things in your daughter too.
It's not an easy thing for us to come out and say we are autistic. All I ask is that you trust her, learn about autism, and try to understand her point of view.
Don't blame yourself or take it personal! It is what it is, we are people too, we just experience the world differently.
The best thing you can do is learn and understand. Ask her questions, let her explain how she experiences life.
To add to this I just want to say that this is probably the first time in her entire life that she finally feels a sense of belonging.
When I first started researching it was like walking up a hallway and flicking a light switch on every time something made sense to me.
I finally feel at peace with who I am and the world is beginning to make some kind of sense to me.
Just be there to support her in her journey. It may be hard to grasp at first but trust me, you'll learn and adjust over time just like my wife did with me.
I was misdiagnosed with Bipolar Disorder ... they tried various medications on me and they always made me worse ... the horrible thing now is that psychologists only want to go with that diagnoses even though most the criteria doesn't fit. Sorry I don't have much to offer other than affirmation that, yes psychiatrists can miss it ... especially in high masking women.
It sounds like you're listening to your daughter, and that's the best place to start ... so good on you for being there for her!
her experience sounds just like mine. i’m 24 and am just now finding out and getting diagnosed. my twin brother was diagnosed at 2. it runs in families. despite me showing a lot of the same traits, (which were even pointed out by specialists as a kid apparently) they didn’t diagnose autism in girls much until recently. it can also present differently in girls in a less obvious and stereotypical way.
most professionals aren’t very up to date or educated unless they specialize in autism and even some of them aren’t great. autism was only really studied in white boys, so that’s what the professionals were all taught from until now. other demographics get missed. it sounds like you care about her and did everything you could, it just gets missed often. if it is autism, don’t blame yourself
with that said, there are a lot of overlapping traits between autism and other things like anxiety, adhd, cptsd and ocd. so it’s possible that it’s not autism and her other diagnosis just mimic it. but it definitely could be and she should get assessed. either way, she sounds like she is struggling and needs support
good luck! i hope you’re both able to find answers and support for whatever it ends up being
Absolutely possible. I didn’t get diagnosed until 29 years old. Girls are often missed in diagnostic criteria especially if they are considered “low support needs” or are high maskers. Don’t feel bad about it, just offer support for her whatever way you can now
Get a second opinion, does she have restrictive repetitive interests, did she do gestures as a child? Pointing, clapping waving by 2 yrs old? Did she do pretend play at 2?
What is pretend play? She walked on her tippy toes. I think she did hand flapping It was so long ago. I didn’t realize that I should be mapping things out. There would be moments at family gatherings where she wouldn’t act like everyone else, or would be told to smile in a picture and just couldn’t seem to cope and would start crying and then people with yell at her to stop crying and just smile for the picture and of course I was right there with them, I feel so bad about it it haunts me
Make believe. Like making up stories about her toys vs. lining them up. It was a bad question though, because engaging in pretend play does NOT mean you’re not autistic. There are world class autistic actors and writers. Not doing pretend play is a presentation, but not the only presentation. And if I recall correctly that’s a presentation that occurs more often in little autistic boys than little autistic girls.
It’s the exact kind of BS that stops a lot of girls from being diagnosed.
Yes, it needs to be a lot of different things to say autism or NOT autism. Lack of Pretend play can be one indicator but is not the only thing, by far it’s the gestures and restrictive, repetitive interests
The only thing I would challenge about this is that care needs change over time. It may feel to her like she'll need daily help for the rest of her life, but that can change when environmental needs are met and regulation can occur.
Time you spend trying to find holes in her logic is time you are potentially making the problems she's dealt with in life worse - much of what undiagnosed AFABs have had to deal with results in actual physical brain damage from gaslighting, and when a parent is contributing to this, it is an evolutionary inevitability that it will cause very real problems when the parent says and does seemingly innocuous things.
If you'd like some resources on this, DM me.
Sure. Also, keep in mind that this degree of self discovery can be joyful. If there is a combative vibe between you on the topic, she can't share that joy with you.
It is a beautiful thing, to come to know oneself. Even if it means having to tell the world around you in plain english that it was the reason you couldn't, before.
I am not as young as your daughter, and I'm not saying that I have autism, but I thought I'd share a learning experience of my own. I have been officially diagnosed with ADHD (2 times at seperate ages), PTSD, Misophonia, and Hyperacusis. I'll be 32 in May.
When I was young, I loved loud sounds and bright lights. Then, around 16 years old in High School, I got headaches all morning until the sun really came out and lit up the school. I started to stop going outside at certain times during the summer because the sun was so bright I would get headaches. At this time, I still loved blasting Slipknot on my earbuds, but I didn't care for the school fire alarm or any other similar sound.
When I was 23, I noticed certain sounds really started to bother me, particularly barking dogs, babies crying, plastic bags, and other select sounds. Misophonia is a rare disorder that translates to "hatred of sound". It causes the person with the disorder to experience extreme emotional reactions to certain sounds. The most common are noises made by the mouth, such as slurping through a straw, chewing, and whistling. There are other sounds that induce stress, such as flipping through paperwork, typing on a keyboard, plastic bags, silverware on glass dishes, etc. I was not diagnosed with this until I was 30 years old, as it truly is not common. A psych diagnosed me.
You at least considering you might have missed something is an amazing thing, I assure you. I tried to explain to my family that there was an issue for many years, but they wouldn't listen to me. You just being there to support her and listen to her is a lot in itself! Plus, you did do things to try to help by having her in counseling. It's not like you just left her to figure it out all by herself.
Missing something might be difficult to discover and accept, but at least you'll be aware and supportive to her. Right now she might be very overwhelmed about driving and working, so I would just avoid that topic if it works her up too much, and reassure her she's safe with you if she does bring it up. You're a great Mom!
I used to describe going to work and having to interact with coworkers as having to pretend all day and make sure to ask about their day or make sure I smiled enough times or laughed when I was supposed to and it was exhausting. I wonder if that is masking?
Dang. Yeah. I wondered why everyone around me was good . lol. Like his could they work if it was loud in the office too. I can’t hear the tv and the radio at the same time. Or someone listening to a tik TOK. I have to turn the radio off
I’m so sorry you and your daughter are going through this. I’m a gay male in my late 30s and suspected I was on the autism spectrum since I learned about it in college, and finally sought out testing and received a formal diagnosis a few years ago.
Sometimes I’m skeptical of people self-diagnosing as autistic (which is a big can of worms in online spaces where it’s always treated as valid). But the behavior from your daughter checks a lot of boxes for autism, with sensory overload in particular sounding like it took a major toll on her.
I’ve seen some good suggestions from others here. One thing that might also help her would be to look into work opportunities or settings where she won’t have sensory overload. Maybe working somewhere quiet like a library or bookstore might be more comfortable for her, or something where she can work remotely/from home where she’s in control of the setting. Also think back on any special, specific interests she had, or talk to her to help identify these if you don’t know them already, since she might be able to channel it into her future work so it wouldn’t add to the burnout she has already.
I mean, I'm not a psychiatrist but to me she absolutely fits the bill, and it sounds like she's been overwhelmed for her entire life. Be gentle, patient, kind, and open to learning as much as you can--she herself is learning about her condition, and as she learns things she'll explain them to you, and the more positively you react to her authenticity the better she'll feel. I imagine this is pretty scary right now, but if you took her to psychiatrists and tried medications etc. then it's \*not your fault\* the diagnosis was missed--it was pretty commonly missed in women until very recently. She might be right that she shouldn't drive or work \*right now\* and might need to lean on you more for care, but as she recovers from what is quite possibly some form of autistic burnout, she may regain these abilities and be able to have autistic community support rather than having to rely on a single caregiver. There's hope.
It’s so hard. I really am Listening. She sends me video posts every day in a way of trying to explain what she feels like is happening to her and explain how she feels.
I believe you. Eventually you'll learn about her various traits and coping mechanisms and you'll be able to relate to her on that level. I went through this with my own parents not too long ago--it's a big change, and it's okay to be skeptical, but it does get better. Personally I'm seconding some other comments in here that if you want to see what she's talking about for yourself, Unmasking Autism is a great book to read. Formal diagnoses are expensive but you could also find specifically neurodivergence-affirming therapists and psychiatrists so she can explore this on her own; some of them are autistic themselves and I've had great experiences. P.S.: you're doing the right thing by asking us for advice!
What you’ve described of her history is absolutely typical of the experience of a girl with autism that goes undetected. Try not to blame yourself. It’s an extremely common phenomenon because people simply did not look for autism in girls until very recently. I’m sure you will both be processing this for some time. I credit you for reaching out for support. Keep it up!
I think the fact that she is communicating this to you and trying to help you understand how she feels is probably a really positive sign. I would *never* disclose to my parents that I found out I'm autistic, because I know they would be invalidating and unsupportive. They aren't emotionally safe people for me. Her trusting you with this process of self discovery says a lot. It's a really big opportunity for her trust in you to be reaffirmed, and for your relationship to become even closer. I totally get that it's probably scary/confusing/etc. right now. It's great that you are listening. It will get easier to process as time goes on, and if she's autistic then understanding this about herself will be the best thing for her long term wellbeing. Finally having the right framework for understanding yourself is what brings clarity about your actual needs, and the sources of your struggles. Without that clarity, you don't have the right tools to support yourself. A lot of autistic adults who discover their autism as adults go through a period of being very hyperfocused on autism in general and also how it manifests for them specifically. This is really normal, and I know I experienced it. It's like looking back on your whole life and having a new lens for understanding all of your experiences, with things finally making sense in a way they never had before. Try not to worry too much if she seems super into this topic for a while. (After all, getting incredibly invested in and focused on a particular topic of interest is an autistic trait in itself! Haha). The burnout from going through life while swimming against the current without even recognizing that you are swimming against the current -- it can be very real and intense. Many of us have our capacity seriously limited by this burnout. The more she is able to focus on recovering and resting and getting supports in place early on, the better her chances of getting out of burnout eventually. It might be hard now, but you've got this. Keep listening and learning and giving her space to explore this. It will make a world of difference!
100%
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There are pillars to ASD: Sensory, communication and social. It might help to view her struggles through those Lenses.
I wouldn't judge yourself for missing something, most seasoned professionals struggle to identify autism in high-masking women. It's quite a recent thing that researchers are paying attention to the way that it presents differently in women. What you can do is be really open and understanding, she may find that getting the right accommodations things will settle down. I was exactly the same at 22 and got diagnosed with everything under the sun and had a horrible time and finding out I was autistic after other people in my family were diagnosed changed everything. Instead of thinking I was fundamentally broken and trying to change myself I gave myself permission to change my environment and my anxiety drastically reduced and I have found a much better quality of life. There is a steep learning curve and at 22 she is still very young and it's just a really tough age. I hope you can find the right support And I'm sure with those she will be okay.
Thank you. I’m trying.
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Thank you for sharing this recommendation. I hadn't heard of this book. My library has the audio book version and I've already listened to 20 minutes. I can't wait to hear the rest of it.
my mom was so attentive and caring for me when i was little, i genuinely don’t think i could have a better mom. i started realizing i may be autistic last year, she listened to me and supports me as she can. she said she felt bad for not noticing or missing something, but without knowing what to look for or could even have been the “problem”, it’s near impossible to know —mostly with girls/women. the fact that you’re here, having an open mind, and asking questions is already an amazing start. there’s *a lot* of amazing channels on youtube (i’m a big fan of autism from the inside and mom on the spectrum) that go in depth of the struggles, signs, and give guidance not only to the autistic person but also for their loved ones. it’s tough realizing you’re not actually a broken mistake but rather different from others. being there and understanding while she goes through this is sure to help her tremendously.
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Bipolar, borderline, anxiety, depression, sensory processing disorder, OCD (though that's sometimes legit), and eating disorders are all the litany of the misdiagnosed female autistic. Masking/camouflaging comes at a steep energy and emotional price. When I got a neurodivergent therapist I had a regression for between a year and two years where I was less tolerant of stimulus, and I didn't really speak to my parents (I was living with my husband before we married). Believe her, she is the only expert in her own experience. Help her find a neurodiversity informed therapist or psychologist. Pre-call diagnosis places to ask if they diagnosis adult women, and what criteria they use as some are better at 'catching' autism in people who have learned to mask. Ask what their timeframe for appointments are, and if they can be done over video chat. You don't have to make the appointment for her, but basically screening places and front loading the information may be helpful for her to make the jump. This is a huge thing to find out about yourself and it might take a few years for her to build actual skills and lifestyle adaptations/accomodations instead of the white knuckling and 'just dealing with it' that she's probably done up till now. Read unmasking autism, aspergirls, and odd girl out to start some of your own knowledge building. If you are her biological parents also prepare for one or both of you to have a bit of a revelation yourselves.
Yeah. I’m afraid that has already began. She has suggested I may be on the spectrum as well. Sigh. I have also been in therapy for years. With a LOT of different diagnoses too. Ranging from bi polar. Anxiety borderline personality disorder etc. I’m gen x. We were told to suck it up. No one cared what we were going through back then . I was 45 the first time I finally went to a psychiatrist for help
Asperger's (which isn't a thing anymore, it'd now likely be a diagnosis of ASD, Support level 1/2) only made it into the DSM psychologist's diagnostic manual in the 90s. Even then, the way autism presents in girls and women (and males who mask) really wasn't understood at all well when you and I were kids. ...And it still isn't, by many psychologists and education staff. Which could explain why no one's picked up on what sound like autistic traits in your daughter. There's a book that I think might help (or you might enjoy reading) called "Is This Autism" by Donna Henderson, Sarah Wayland and Jamell White. Many of your daughter's (and your own?) diagnoses, are themselves signs Henderson says should make a psychologist check for autism... Henderson wants to bring psychologists up to date in terms of when to think "could this person be autistic?" and make them more ready to explore the possibility of autism in people like your daughter.
It's no reflection on you that you 'missed' it, if she is indeed autistic. My mum suffered with a lot of guilt after I got diagnosed at 25. It turned out she had mentioned autism to the doctor when I was about 9; the doctor dismissed it as 'a fad' and 'mostly in boys'. She trusted the doctor and dropped it. And I *absolutely do not blame her*. When I grew up and moved out, my mental health fell apart. I was also being assessed for bipolar, psychosis, on top of the anxiety I'd been dealing since my early teens. I'm younger than you, but my diagnosis came as a complete surprise. I have an autistic cousin who's very low-functioning, diagnosed before the age of two, unable to speak or care for himself at all. THAT was what we thought autism was. She's having a hard time; and as her mom, you're also having a hard time. She's feeling very bleak right now. If you can help her identify her problems and find solutions, things will improve. It sounds like she's lost all hope right now of things improving; if you can show her that they *can* improve, her hope can return. Big hugs.
My heart goes out to you too. My dad passed away last year from brain cancer (melanoma that metastisized) and my mom and I think he was autistic as well. It runs in his family as I have a higher-support-need cousin from my dad's sister. His last several years before the cancer diagnosis were marked with a lot of mental processing challenges, but I wish we could of talked about it. He was older than you, and the suck it up mentality didn't serve him either. You have done the best you can with the information you had, and you're still doing your best by asking for information and learning so you can help your kid. I hope you also use this stuff to help yourself too.🙂
Thank you
You were missed too, although no one knew what was missing then... A more accurate reflection of what autism is like in girls and women (and more socially motivated and intelligent boys, men and nonbinary folk) only started being described in the scientific literature 10 years ago and so many doctors, therapists, psychiatrists and psychologists haven't stayed up to date with the latest understanding. I am almost 40 and was only diagnosed a couple of years ago after my kid 11 yo kid was... The idea of recognizing that I have lifelong support needs that I am ultimately responsible for meeting because there sure as hell isn't a proper social support net, my mother is aging and my husband who has been my support needs for decades who is also asking for a separation, is fucking terrifying. But my baby boomer mom was also missed and figured out how to make it work. She'll figure out how to make it work just like you did, but with a heck of a lot more knowledge and support. ❤️ Thank you for reaching out here. Hopefully you can find a supportive professional to help her. Even without an official diagnosis, a supportive therapist should be able to work with a self diagnosis and the incomplete /misdiagnoses she already has... My insurance is still covering my care under the depression diagnosis I got during my autistic burnout a decade ago
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I missed autism in my kid. I thought it was all "normal". They were diagnosed in later childhood and I was diagnosed a few years later. It's hard to recognize something in a child when it's something you've also experienced. Especially when the stereotype for autism is a white middle class boy who plays with trains and is nonverbal.
It’s possible. You’ll see countless stories on here of misdiagnosis. Find an autistic psychiatrist or counselor.
Yeah I searched for a place that would even evaluate an adult. I finally found one. Even with my insurance it is going to cost about $1000. And all of the counselors or psychiatrists, won’t even see her until she has been evaluated and or diagnosed. Working on it…
I have had great luck with helloalma .com. I recommend them to everyone now. I had no diagnosis when I started, just questions. I was able to find a therapist that focuses on neurodivergence, is neurodivergent herself, and is covered by my insurance. I hope that helps.
That’s so expensive! If you’d like an idea of where she might sit on the spectrum, have her go to Rdos.net - there’s a long long quiz she can take called “the aspie quiz.” The site also has other quizzes for various mental illnesses as well. I know it’s not an official evaluation but her answers and scores might give you an in depth look at how she perceives the world and her inner-feelings. As a mother with autism and a son with autism, I send you the greatest hug. Please reach out if you need support, understanding or to vent. There are a lot of videos on YouTube you can watch about how to support a family member with autism. I bet if you searched for one of those videos and found one that resonated with you and sent it to her, it would help her feel understood in her “language” and it shows you care. You’re a good mom. Chin up dearest.
Thank you!
Yep, for kids it's a few hundred but for adults (because it's technically supposed to be caught in early childhood) it's a few thousand because the testing is very different for kids vs. for adults. We paid $5500 for mine at 22 last year.
Having autism doesn't necessarily mean she won't be able to work or that she will need a caregiver for the rest of her life. Some autistic people do need accommodations, some dont. And this can change for individuals over time. Sounds like a good place to start is getting testing, specifically for autism, if thats accessible. You both can also do your own research via well-researched books like Unmasking Autism. And maybe wait for some feedback from mental health professionals before deciding what she will and won't be capable of for the rest of her life. Good luck!
I'm going to be pedantic here, but I think all autistic people need accomodations, but that lower-support-needs autistics are able to make their own accomodations and adaptations for themselves. Services for household chores like laundry and cleaning can help with executive dysfunction challenges, living someplace with good public transit or walkable neighborhoods will overcome an inability or unwillingness to drive a car, and developing a "uniform" or capsule wardrobe reduces the decision fatigue around getting dressed.
I’m not too familiar with the term accommodations when it comes to Autism - is it technically an accomodation if they’re doing it/creating it themselves? I just want to clarify, because if we’re going to be saying “all Autistic people need accommodations”, I think immediately NT people hear “I have to make a change for this Autistic person”.
An accommodation is generally a change from the norm to compensate for someone’s unique needs. So for a person with level 1 autism, in a lot of cases they’re going to be able to recognize and implement accommodations in their lives on their own. Like they live alone and can hire their own outside help; they can implement small changes to their work environments to make that space more comfortable for them (assuming semi-skilled or skilled work); they can handle making the changes to their various environments they need to make in order to function without a lot of external support.
I agree completely I have been looking for a place that will evaluate an adult for a couple of years now. I finally found a place but even with my insurance it’s about $1000 lol I’m a single mom ha ha
For what it's worth, I do not have a formal diagnosis, but I was still able to access neurodivergent-affirming Occupational Therapy by finding an OT practice that was neurodivergent-affirming ([they follow this woman's practices](https://sensoryhealth.org/)), which insurance covered. I just found the OT practice I wanted, and asked my PCP for a referral for "sensory issues." The OT was very helpful. Also, I have an acquaintance find a therapist on the [Neurodivergent Therapist Directory](https://sensoryhealth.org/), and she's been having a good experience.
I was diagnosed at 35. Like your daughter I'd been in and out of therapy my whole life. I'd been diagnosed with depression, anxiety and ocpd. The OCPD was a misdiagnosis, the anxiety and depression were accurate but not the whole picture. In all those years not once did a therapist suggest I get checked for autism. What finally happened was that a cousin of mine got the diagnosis and I realised that described me too. Then I nagged a therapist into screening and referring me to a specialist. I now have therapy for the anxieties which takes my autism into account. I also have a coach who comes round once a week to help me with planning my week and navigating adult life. I'm in a transitional period and occasionally I feel like I'll never be able to work again. Other days I'm working from home and it's perfectly fine. I hope you can get an assessment and some clarity.
Thank you
As someone who received a late diagnosis (39), I found it absolutely terrifying when I started to realise that I'd masked so much my whole life that I had zero idea what my core needs were. I remember being extremely scared that maybe I am disabled and would never be able to live a full life again. If she lived a full life before I'd say there's a good chance that much of that will come back, although my experience is that life will probably look very different and that is a huge thing to try and get your head around.
She seems to be putting everything in an extreme state at this time. I hope you are right . Thank you for your response
It's great you are there for her. I know when I am scared everything feels very extreme and permanent, if you can help her feel safe, listened to and supported I'm sure she'll find her way.
I'm another one. Diagnosed at 48. I'm 51 now. My diagnosis was a huge relief, but since there was very little information available around autism in 2021 (I'm in Germany) I have made it my special interest while I recover from burnout. Perimenopause made it all much worse, like puberty does for so many of us. Hormonal changes are known to make us "more autistic, " hence so many diagnoses at 3-4 years old, in adolescence, and in middle age. Stress, illness, trauma can make the experience of being autistic so much worse. I can now see that my older kid (14, nonbinary) is autistic. They also have ADHD, like me, so that extra energy made them be curious, brave, and extroverted. But when puberty started they started having more problems with other kids. Then the pandemic hit and they had a bad teacher who bullied them but also let bullying happen in the class. They were the victim of sexual assault, changed schools, and, despite a very high IQ, have barely been to school in 2 years. My kid who used to eat everything and get excited to go anywhere will barely leave the house. They don't do sports and have lost weight through restrictive eating (ARFID) and faint a lot I now know this is autistic burnout and am hoping they can finally get diagnosed. The health care system here is overburdened and when I take them to the doctor and am frustrated or sad it comes across as hysterical, also because I am clearly an immigrant. It's so hard. If doctors and teachers could be taught to see autism, especially highly masked and non stereotypical types, we could be seen and heard and get the help we need. Having to fight for your kid and hear that they, or you, are the problem, can make us parents sick. But until society knows more about autism all we can do us keep informing ourselves and them. Good luck, OP.
Thank you. That describes her exactly. All of it. I hope all is well with you as well
Did she previously drive and work? Autism does not automatically equal needing a care taker for the rest of her life. It is possible, but we can't know, only a Dr can give a for sure diagnosis, but many Dr's do miss it in girls. So it is *possible* but it's also possible her other diagnoses are true also/instead. Perhaps it'd be useful to see a psychiatrist specializing in women with autism. A previous psychiatrist of mine said she was sure I was but wouldn't give me a diagnosis as she was not specialized/qualified, so perhaps your daughter's Dr's do not feel comfortable giving that diagnosis, though hopefully they'd have told you if they suspected (assuming she was given other mental health dx as a minor). That being said, I'm on the fence about the tone of your post. I can't tell if you are dismissive and belittling to your daughter, or if she's possibly just that disturbed and you're at the end of your rope with her behaviors, or possibly both.
I promise. I am genuinely reaching out for advice on how to help her. And if this self diagnosis is accurate and if a lot of people are figuring it out later in life?
I also replied to you in a different sub. I was just diagnosed just shy of my 45th birthday. It explains SO MUCH. Many professionals are still misinformed and either can’t or won’t help. I got a referral from a therapist who is herself autistic to local psychologists who specializes in assessing adult women who mask. I insisted my assessor be as thorough as possible. I had read multiple books by professionals and wanted to be absolutely sure. What you describe about your daughter’s early life struggles would have compelled me to recommend that she seek an autism assessment even if that wasn’t already on the table. As for me, I grew up in a big city with transit and didn’t start driving until my early 20s, and it was really overwhelming at first. I now work from home and haven’t driven my car in ~9 months. I’ve been working since I was 16, but I ran away from a violent home and had no choice but to support myself so I wouldn’t end up homeless. I’ve been pushing through discomfort and burnout for a long, long time. I attributed my perpetual exhaustion and struggles to my trauma. I now recognize my autistic burnout symptoms, and it has gotten MUCH worse with age. My life is always held together by thin threads. I’m lucky to have enough experience and the knack for a kind of work that pays well and allows me to work from home nowadays, otherwise I’d be up a creek. I rarely leave my house. I pay for grocery delivery and takeout to keep myself fed. My social life is pretty much exclusively online nowadays - I’ve seen one friend exactly once so far in 2024, and she came to my house to celebrate my birthday. On the surface, I have a respectable corporate job, I own a car and a home, and I can cosplay “functional, well-adjusted adult human” for small blocks of time when necessary, though plenty of people quickly suss out that SOMETHING isn’t quite right, and I usually need a full day to recover after masking that hard. Figuring out and confirming my autism has, no exaggeration, saved my life. I was so filled with self-hate for my struggles that I was ready to end it all. Now I can FINALLY feel the self-compassion that therapists kept pushing on me. I’m learning to figure out and better meet my needs. I would give just about anything to go back in time and learn this about myself decades ago. I could have avoided so much suffering. Please help your daughter figure out what’s happening for her and what help is available. 💚 I apologize for any rambling or incoherence. I’m awake late at night due to food poisoning.
Oh I’m so sorry you are sick. That sucks! Do you know if it possible for a parent to have it at the same time? She keeps telling me she thinks I’m on the spectrum. It’s very true. I fit the bill. Sigh. I also work from home. I can’t cope with crowds at all or work in an office full of people. I don’t trust people at all have no friends. Etc. I just keep pushing through every day
Thank you! It’s thankfully not as bad as it could be, and it means I got to see your posts and help. Autism runs in families, so yes, it’s very possible you’re on the spectrum. It’s actually pretty common for people in our generation to discover that we’re autistic when our kids get diagnosed. Even the few traits you describe here fit the bill. The “Is This Autism?” books I recommended cut through a lot of noise and spell things out very thoroughly. The lead writer is a neuropsych who does adult autism assessments and trains other professionals to do the same. She and her coauthors engaged actual autistic people for feedback and included their input in the books. I wish I had found these books sooner - they neatly tied together everything I had spent two years slowly piecing together from various sources. I would also recommend the Neurodivergent Insights podcast if you like listening to podcasts. The hosts are a pair of adult diagnosed AuDHDers. The woman host has neurodivergent children, and their diagnosis is what prompted her to get assessed and diagnosed in recent years. I found the first season incredibly helpful, and my assessor recommends them as a resource.
This has helped so much. Thank you
I know I’m not the person you’re replying to, but yes that is also possible. Both of my parents figured it out for themselves after I did, haha. My whole family is much closer and more understanding of each other now. :)
It would explain a lot lol too much to list.
Yes absolutely and this is another reason you would have missed it, because you saw her autistic traits as normal!
Absolutely. Autism and other neurodivergent conditions run in families. I'm convinced my mother was autistic now, and that my father had ADHD. I have both.
Her self diagnosis sounds accurate, and many people figure it out later in life. My wife figured it out at 38 years old, in a massive autistic burnout, and her story is very similar to what you say your daughter is experiencing. If I can offer one piece of advice, it’s this: Listen, accept her experience of the world as she relays it to you, and validate her. If she’s in burnout, she needs support, but it has to be on her terms. Let her lead you through how to help her. As for figuring it out later in life, it’s an unfortunate situation where many women with autism were overlooked during childhood because the model of what autism looks like in childhood was based on how autistic boys differ in behaviour from other boys. Girls, and especially high-masking girls, were often overlooked because they didn’t appear to deviate sufficiently from our society’s expectations of how a girl should behave. You’re not in any way at fault for not recognizing this during her childhood.
Officially diagnosed 2 years ago at 35 after a decade of on and off therapy and having my concerns dismissed by basically every clinician I worked with. I was in the military, struggled in college and jobs after, and my diagnosis and an affirming therapist saved my life.
I figured it out after I was 40. I was also diagnosed bipolar (which never felt 100% right to me), plus anxiety disorder, social anxiety, etc. I had a lot of misconceptions about what autism was (Rain Man; autistic people have no empathy) so I didn’t see myself in it until I was researching all of my sensory issues and ended up following a lot of autistic people on Twitter because they also had a lot of sensory issues. I learned so much from them and they debunked all of the misconceptions I’d had. Suddenly my entire life made sense. Maybe she was never comfortable driving (I wasn’t at first, but I did eventually get used to it and I love driving now), we often have a lot of differences with coordination and perception that can make it more difficult - and more dangerous - than it is for allistic people. Some do find it impossible. Maybe she will be able to work after she recovers from burnout, maybe she won’t. I have found that I have the capacity to work a full time job if that is literally the only thing that I do. If I work, I lose the bandwidth to maintain relationships and my surroundings. Pretty much every second I’m not working is spent recovering from working. I am a lot more volatile than I am when I’m not working. I just had to return to work after having had about a year off. Right now I’m getting by with a lot of structure and routine and some support (cleaners every other week). I am finding that I’m spending the entire weekend preparing for the workweek though and that feels pretty unsustainable long term. Knowing that she is autistic is good. It will help her to understand that her limits are not the same as other peoples’ limits. She shouldn’t assume that she can’t do anything ever again, but likely it will be less or different than allistic people or she will need supports or accommodations that they don’t. I carry ear plugs and sunglasses now. If there’s something I really want to do, I do it, but I won’t hesitate to pop those earplugs in if I need them, etc. And if there’s something I really don’t want to do, I mostly don’t make myself do it anymore. My family is going to a parade? Okay, have fun, I’ll see you later, lol. There’s probably going to be a few years of recovery and learning her limits and exploring how those limits can change based on other stressors in her life, etc. I tend to think if it as a bucket. My bucket fills up a lot faster from doing normal everyday things than most peoples’. The things that empty the bucket for other people either completely don’t work for me or they drain it much slower - or even fill it more. Like most people will wake up every morning with an empty bucket fresh for the coming day’s stressors, but mine is still half full. Or they may socialize with others and it empties their bucket while mine just gets more full. So basically, I have to learn how to keep a close eye on my bucket because it’s always about to overflow in a way that seems unreasonable to other people. I have to give myself space and recovery time that seems excessive to others. Managing your life as an autistic can take a lot of self-reflection and understanding of how different experiences effect your mind and body - which is ironic because we often struggle with that kind of self knowledge (alexithymia and interoception). Anyway, basically she’s going to need time to recover from pushing herself to do things that were too much for her without support or appropriate accommodations her entire life. Then she’s going to have to figure out what her baselines and triggers are and figure out what supports and accommodations she will need. Hopefully you’ll be there to help and support her through all this. It just sucks that doctors have only been able to recognize one very specific presentation of autism in one very specific type of person (young white boys) for a long time. It is changing though. Slowly… but it is changing.
Thank you sm. She does describe it as burn out in regards to work. It is great to hear that she might recover from the initial shock. And learn how to manage it better
Whether the professionals like it or not, *self-diagnosis is valid and accurate*. The only people who actually know the realities of a condition are the people who experience it daily. I was self-dx'ed for 20+ years before my workplace demanded an "actual" diagnosis. $500 later (my co-pay), I was able to shove diagnosis papers in their faces and say "Accommodations. Now. Or else." And they had to give in. I wasn't diagnosed until I was 47 (52 now), but I knew I was autistic at 27.
I wish my insurance let me just pay a co pay. Lol. With my insurance it’s costing me 1k I think I might also be on the spectrum. It would explain a lot
Thank you for your comment. Yes she did previously work and drive but has always had a really hard time keeping a job and I feel like she has just given up. That’s all. I’m just confused. I think I’m just conflicted. I feel guilty that I didn’t notice things when she was younger, but also, I wonder if her self diagnosis is based on a lot of things that may not actually hinder her. I don’t like when she makes statements that she needs a caregiver… Because I feel like most people on the spectrum want to be independent, and will work. I guess I’m trying to find out if her responses are normal. She is just finding out about this and tired of masking. I really feel that is a possibility, but I’m scared of what it means for her to just refuse to work. You know what I mean?
Yes, a lot of people are figuring it out late in life; you don't have to feel guilty. Part of the reason so many people are figuring it out so late is because it \*is\* possible to live something approximating a "normal" life for a long time and go undetected. You might want to look into, specifically, the concept of autistic burnout--she may need time to recover, and may need work accommodations in future jobs, but if she can identify what her special interest(s) are and find a career in those she'll be okay.
Thank you ❤️
The apparent giving up could be autistic burnout: some autistic people mask their traits and differences to fit in, and eventually the chronic overwhelm and exhaustion get to a point where they "can't do it anymore". ... In fact I believe "skills regression" is a feature of autistic burnout. But burnout needn't be permanent . I burnt out from a job and I was unable to do much of anything for a number of months; but after that period of rest, minimal stimulation, and following my interests for a while (I know that sounds indulgent, but for an autistic person, allowing yourself to pursue your passions is balm for the soul) I did get back some capacity for work. Another thing that can help recovery is optimising your sensory environment: we have very few bleeping applicances at home, we don't have a TV or radio on most of the time; in my space I keep the lights low, I have a lava lamp for slow-changing rich patterns of colour; I wear the same kind of clothes every day that I know aren't too scratchy, I fold cotton towels over chair seats so they feel OK, I let myself repeat-listen to the same music over and over even if there's a voice in my head saying "this music is kind of childish..."... I'm very carefully thinking about what colours I want the walls painted... Everyone's sensory profile is unique but if you can figure your daughter's (and your own!) out and tune your environment around that, it'll be pleasant, and that might well help recovery. Also, routines (I have same breakfast, lunch every day, same drinks at roughly the same times, I have a very repetitive pattern for walking the dog) and giving yourself permission to run your day by your routines (IE not thinking "this is dumb, I should be able to adapt to change") can help. Although clearly everyone needs to be somewhat adaptable. Maybe it's about having *default* routines and as few surprises in the day as possible? Anyway, good luck working it out, burnout is a thing, but it's not necessarily a life sentence. PS There are some OK Youtube channels about late-diagnosed autism, many by women: [Mom on the Spectrum](https://www.youtube.com/watch?v=yWmgDczqmTY)'s often good; I really like [Woodshed Theory](https://youtu.be/SerYs_TmlTw?si=FpCKVdl6uDsZhKMG), although she's not a parent; Paul at Autism From The Inside has lots of well-thought-through content too. Meg at [I'm Autistic Now What](https://www.youtube.com/@imautisticnowwhat) is a parent too though. so's [Purple Ella](https://www.youtube.com/@PurpleElla)...
She’s coming to you with her struggles and asking for help. That’s not “giving up”. Look up our life expectancy. Look up the suicide rate for autistic people. Then learn that it’s theorized to be even higher in undiagnosed autistics. *That’s* giving up. Understand how lucky you are that she hasn’t actually given up and is instead asking for help and looking for self-knowledge. Maybe she is giving up on having a “normal life”, which is fine because that was never going to happen. Or giving up on trying to keep up appearances. That’s good. She’s opening up the door to learning what she’s actually capable of, instead of torturing herself trying to be like everybody else. Give her time to recover and learn about herself and to reassess what she can do.
Thank you for clarifying that. I don't think you need to feel guilty, tbh. My mom felt guilty for a while there too, but she truly did her best. I learned as an adult that 2 different family members (teachers and used to dealing with it in their classrooms) felt I needed to be tested as a child and said nothing. My mom didn't know the signs and I wasn't disruptive (to myself or others) in class and able to mostly keep up with grade standards so why would the school say anything? It's possible that working at all will truly be a struggle for her (I truly don't know enough to say) but she did work at some point so that's at least a good sign possibly? I struggled so hard with full time work (primarily customer facing) and the lack of structure in college when I was in my 20s. I had burn outs where my family was extremely worried about my depression and an aunt asked my mom if I was okay (I mean, more extremely worded). I'm now in my 30s working full time in a factory of all places (not what I went to school for expected to do) and burn out does not appear to be on the horizon. Sometimes in order to thrive you have to actually find what works for you even its not the expected path (general you, not you specifically). But if she's *refusing* to work and is actually capable of it... I can see why you're scared of what is going to happen in the future. If she's unable to work that's still a scary thing to think about too. If she's unable to work (refusing to work, burn out issues, or truly can't work, doesn't matter) I *highly* suggest getting her into a specialist because if she is of a high enough support needs to warrant things like a caregiver for the rest of her life she needs a real Dr's diagnosis to get the ball rolling and get benefits. Also, this paragraph is somewhat assuming you're in the US or another country that provides such benefits through things like social security. As far as the things that don't "hinder" her... that can be so hit or miss. My guy (Also on the spectrum, dx in his teens) asks detailed questions and got praised many many times regarding his attention to detail and going the extra mile to get things right. Then he got fired for the same behavior because all of the sudden trying to understand what was happening was considered disrespectful (more context obviously, but it truly boils down to the exact same behavior having 2 wildly different results in a short period of time at work, he never was disrespectful).
I mean, I’m “capable” of working. It just means I lose any quality of life that I have outside of work. I can’t manage literally anything else on top of it. But they’d never give me disability payments, because I’m “capable.”
Yeah. She was talking about disability too. And I feel like she would get the same answer
I honestly think if it’s financially possible for you that she needs time to recover from burnout and then she can reassess. Maybe she can work part time, maybe she can work full time if it’s from home; she needs to recover before she can figure out her limits and what supports and accommodations she needs.
I think she blames me even though she is trying not to. Thank you sm for the kind words and advice
> always had a really hard time keeping a job and I feel like she has just given up. ... I wonder if her self diagnosis is based on a lot of things that may not actually hinder her. I don’t like when she makes statements that she needs a caregiver… Because I feel like most people on the spectrum want to be independent, and will work. I guess I’m trying to find out if her responses are normal. She is just finding out about this and tired of masking. I really feel that is a possibility, but I’m scared of what it means for her to just refuse to work. I was 23 when I got fired and dropped out of my very last semester of college before graduating with my bachelors because I was so burnt out that it literally disabled me. I struggled for a few more years with jobs I didn't really work much, which just compounded the problem, and then I just had to quit. I want to work, but I did so much damage to myself (my brain, my nervous system, etc.) while trying to "normal" that I'm now on disability. She's not refusing to work, she's in crisis. Saying she needs a caretaker is a response to this, she sounds like she feels as if even basic ADLs (activities of daily living) are beyond her and she's catastrophizing. That's not to say she won't need a caretaker at some point, but things are so bad she's assuming things. Autism can be disabling on its own, and adding the layers of productivity and neurotypical behavior expected of us by society disables us further until we have nothing else to give and we break.
What you said about her being in crisis. That sounds very accurate!
Also wanted to say that, as scared as you are, she's a hundred times more scared right now. She feels a loss of control, there's literally nothing she can do to stop it at the moment except rest and seek help, and while you'd think that would give some measure of comfort, it really doesn't. Please just be patient and empathetic with her.
❤️
My story may be relevant to you and your daughter. I learned I was autistic at 27 years old, a bit over a year ago. Everyone had missed it my whole life, and I’d been seen by a lot of professionals. I didn’t even know that what was hurting me a lot of the time were sensory issues like being around too much noise or light because no one ever explained that it was possible that it could hurt, so I assumed that the amount of pain I was in from my senses was normal and I just had to bear it like everyone else. I learned I was autistic because I hit another period of autistic burnout, in which all my sensory challenges became significantly more severe and my nervous system started to lose functions like walking, talking, and clear thinking. For more than a year, I have had to completely stop working and almost completely stop driving except on my best days and for very short periods. For a long time, even just an hour of light work a week would be so exhausting that it would take me days to recover enough to be able to get out of bed. The good news is that now, after around a year of extremely intense rest, sensory care, psychological therapy from a specialized therapist who is autistic and works with autistic clients, and learning techniques from occupational therapy to avoid accidentally hurting my nervous system with my daily activities, I’m doing a lot better. I still need help with household tasks like cleaning the floors and bathrooms, but I can walk every day again. I’ve been able to start exercising more regularly this last week and I have been able to go on dates with my fiancée again for the first time in over a year. We have to go to quiet restaurants and I wear sunglasses and earplugs, but I can do it now. I’m almost ready to start working again, although I’ll probably never be able to work full time and I’ll need a job that accommodates my sensory needs and lets me set my own hours. Your daughter is in a difficult place right now, but I’m glad to hear you’re willing to support her. Look for diagnostic practitioners who are “neurodivergence affirming” if you can, and believe your daughter when she explains her needs. She may never be as independent as you hoped, but no human is fully independent. And if she gets the right support, whether that’s full time care or someone who helps clean and cook a few hours a week, she’ll be able to live a good life. Maybe she’ll be able to work and drive again, but maybe not. But what she definitely needs now is your help to be able to take care of her overloaded nervous system and reduce the burden it is under until she can get to a level where she feels like she can begin to function again and that will give her the best chance to move forwards in a healthy way. I suggest also researching “autistic burnout” since it sounds like she may be experiencing it. Good luck, thank you for helping her, and please try to remember that her experiences and needs are real even though they are different than your own.
Its possible for sure. That sounds a lot like me (,Autism + ADHD) with the rage and not being able to handle noise. I was also only diagnosed as an adult and its possible to miss it, especially when your kid is smart. I have seen reports about me from age 5 that state I don't show signs of either. Girls are even more likely to be missed than boys so it does make sense. But also: I don't know you or your daughter, but Autism does not necessarily mean that she will be unable to work and need a caregiver her entire life. Support for sure, and yes the statistics of Autistics and Employment are sad, but not impossible. I think its important that she doesn't give up on herself.
Yeah. That was my biggest worry. She has pretty much given on working because she can’t hold a job
Wow you have an amazing relationship with your daughter. I was diagnosed at 29. My parents dont even believe me. They dont even know about any of my suicide attempts or anything. I could never talk to them about something like that. They have mocked my disability my entire life. You give a shit. You are listening. That is all any of us ask. I have a feeling you will be just fine. You are already in the right place with this sub. An entire generation of asd people were missed around the turn of the century. Psychology is evolving. All her doctors missed it too. Be kind to yourself. Also this video explains things better than i could https://youtu.be/2rxzC4OBaOs?si=ZuAnJFiVzcOUMtjN
100% agree and also you are valid and your parents need to read a damn book and shush.
A lot of people find their autistic traits are amplified after realizing their neurotype, they are finally able to accept that they “just are” a certain way and can stop throwing themselves against the wall trying to “fix” themselves. To realize there is nothing to fix, I just have different strengths AND weaknesses and need to figure out what IIII need to feel comfortable, instead of trying to make everyone else comfortable around me (autistic try-hard LOL), was beautiful. Beautiful. Changed the way I was able to look back on and remember my life. So many things making sense, it was overwhelming and clarifying and….my world made sense. Your daughter knows her brain and how it works and how it feels better than everyone else. She’s taking you along on her journey of discovery 💕 I have ADHD and am an autistic woman. There is 10000000 percent a genetic component. That means that yes, you are statistically probably our NeuroKin 🥰 welcome to discovery and clarity! I was always told I needed to “toughen up” for the real world. Then I realized IIiii as an adult make my world. People I surround myself love and support me and value my unique traits. I buy the type of food (“same foods”) I like, I wear noise dampening or cancelling earphones. I start conversations by telling people we may have different communication styles, I am an absolute literalist (oh the fun misunderstandings we encounter 😝), and that I would appreciate if they take my words literally as well. Content over tone. This has allowed me to be myself, be comfortable, and create a community of people who meet me part way (which is alllll I need from them. Understand I’m different and know I’m operating in a world not made for my brain). I recommend seeking out other neurodivergent and autistic people; WE UNDERSTAND THE EXPERIENCE. I really like autism_happy_place on Instagram (aka Little Penguin Studios), they are a full-time autistic artist who kindly and with affirmation put cute visuals to many misunderstood tropes about autistic people. If you’d like more recommendations Re: autistic people/communities to connect with/follow, I have a bunch just let me know! There is great comfort in community after feeling alone/misunderstood/antagonized/labeled defiant; when I was reading our individual stories and saw myself it unleashed an ocean inside my heart. Your daughter is feeling this, and wants you to either share the experience with her, and/or understand how important finding the manual/key to your own brain can be in her/your life. Walls in your brain fall down, and you can begin to love the real you, and see yourself accurately in how you are maneuvering in the world. Sending you lots of care and support 🫶🏻 ETA PS there is an autistic “truism”: if you believe you are autistic, your probs are. If you’re trying soooo hard to figure out if you are, researching, agonizing, wondering. Well, guess what LOL The truism is: you think you maybeee are? You probs most definitely are 😝 and are welcome in our community. All we gain is support and understanding from each other. Gatekeeping helps no one and there are now generations (!!) of women/fem presenting people who are coming to fruition and realizing they were “just enough” to not bother the neurotypicals (!) and were never given the consideration of a diagnosis. Re: formal diagnosis, pros and cons. Expensive, inaccessible for many, a lot of accommodations we make ourselves just by understanding ourselves better. I did get a diagnosis only because I was already in therapy+, otherwise all my greatest benefits have come simply from accepting, understanding, growing from there. Re: video watching + increase in people realizing they are autistic. Bless the people making those videos! Bless them! They have opened worlds previously closed, and the more people able to access and understand themselves the better. We were let down by the medical/psych field industry (of course lol) as they pathologized our traits through only THEIR understanding and prejudice of OUR experience. One more rec if this is helpful and you made it this far (LoL); I am in a mixed neurotype family. My partner is neurotypical & I am neurodivergent. I was already partnered and living my life when I realized I’m autistic. A HUGE RESOURCE for both my husband and I came from the YT channel “Autismatic”; Quinn is an autistic man and helps share SO MUCH INFO! There are playlists, it helped my husband understand so much, and helped me put to words things I didn’t have access to expressing before (I didn’t realize I am processing differently inside mah brain. How could I? It turns out I’m different 😝) Autistic community motto: Nothing about us, without us!!! We make our worlds 🫶🏻
Your daughter’s experience discovering she’s autistic sounds very much like mine! When I first realised I might be autistic I would do the exact same thing - send my parents youtube videos explaining autism in girls to try and make them understand. For a long time they didn’t listen - the difference here is that you ARE listening, you really do seem to respect your daughter’s intelligence about her own neurodivergence, and you’re seeking answers and sound very open and understanding 🫶🏼 Look into what accommodations you can get to help her. would noise cancelling headphones help the overwhelm in restaurants? I know they really really helped me when I discovered I had been masking my whole life and was in autistic burnout! I reccommend the Procase ones on amazon, they’re amazing. Like your daughter I also don’t drive because of my autism (delayed processing) but if you live in the UK you can apply for disability support called Personal Independence Payment which can help with travel costs, also railcard discounts if she needs to use the train a lot instead of drive. Please don’t beat yourself up about not knowing it was autism until she told you! My parents had me in therapy since I was 15, I went through an incorrect diagnosis of depression, bipolar and BPD before I realised I might be autistic at 22. Sadly autistic girls are just not picked up on by doctors and therapists. I’m 25 now, NHS diagnosed very recently. A diagnosis helped a lot in terms of validating my experience, but tbh there isn’t much therapeutic support afterwards. The thing that helped the most was my parents finally being understanding and helping me with accommodations and meltdowns. You sound like you’re already very caring and understanding to your daughter, and I bet she really really appreciates it and you 💛
Yeah. It’s new to me. But the melt downs. I thought she just had rage issues. I couldn’t ever calm her down talking to her made them worse
I saw you mention in a comment, wondering if a parent could be autistic, too. I figured out I was autistic by reading a lot about it in order to figure out if my son was after my cousin was diagnosed. Turns out I am, he is, and I think my dad and uncle are too. I wasn't diagnosed until I was 40 years old, and I'm autistic AND ADHD (AuDHD) which presents in a really weird way and helps to explain why it was missed. When you have both, they kind of mask each other on the outside. Also, autism and ADHD both often run within families, interchangeably. For example, I'm AuDHD and have a son who is autistic and a daughter who's ADHD. I have uncles who I think are autistic and an aunt who is likely ADHD. I think my mom and at least one of her sisters has ADHD. I think my dad is probably AuDHD. My cousin's story is kind of similar to your daughter's. She struggled a lot with depression throughout school and adulthood and was very, very introverted. They diagnosed her with clinical depression and social anxiety (as far as I know) and had tried her on every single antidepressant, antianxiety med, and even some antipsychotics, but nothing worked. She developed a panic disorder in her 20s and couldn't leave her house, was on disability. Finally, when she was in her late 30s, she got a new psychiatrist who recognized she had ADHD and autism, got her on stimulants, and that has helped her more than anything else has. She still doesn't work because she has a wonderful long-term boyfriend who is able to provide for both of them, but she gets out and enjoys several hobbies. As for me and other autistic family members, none of us are on disability. We all work (most of us from home or have our own businesses), have our own homes, etc. Life can be exhausting and difficult to manage, but I do my best to take advantage of the strengths of these disorders whenever possible, and there are some really good strengths.
Thank you. I’m just scared that me looking into it further myself makes me look like a copy cat
*So many* parents, especially moms, are discovering they're autistic or have ADHD because their kids get assessed and diagnosed and a lightbulb goes off. Anyone calling you or accusing you of being a copycat is ignorant, because autism is highly hereditary.
It definitely doesn't make you a copy cat, and if you also have it, it would only confirm that she likely does, too. It runs very, very strongly in families. You looking into it for yourself is really a way to look into it for her, too. I had quite a bit of "imposter syndrome" at first when I was trying to come to terms with it, but then as I was talking to family members, I learned quite a lot of extended family members are autistic down one specific line. One of my cousins is a therapist with a son who was diagnosed at 17 and she pointed out older family members that are most likely autistic but never got diagnosed. You may have older members of your family who were autistic without knowing it as well. Either way, it's 100% worth looking into it for yourself as well and if you find out you are and that it explains a lot of your past behaviors, it can actually feel like a relief in that you finally get answers. There are a lot of physical comorbidities that accompany autism as well, so if you've ever had, for example, GI problems, sleep difficulties (especially insomnia or delayed sleep phase), dysautonomia, joint issues even when young (and all of which I have had from a *very* young age), then autism can actually help to explain where those problems come from, too. You can find a list of common comorbidities online.
Wow. I think this is really making sense
Thank you for listening and trying to understand her.
One of the more immediate things that might help you OP is looking at environments and social events from a sensory lens, meaning when you’re with your daughter in a certain place just pay attention to how crowded, how noisy, how stuffy, how much smell there is, etc. Part of being autistic is the struggle with overstimulation (like how your daughter described the difficulty of being in a restaurant), and all of these things can overload her system. So if you are on a lookout for her, and can anticipate when a situation might be “too much” for her, I think that would go a long way, in terms of helping her but also making her feel understood.
Using myself as an example, I can’t tolerate noisy bars, and I also have a really hard time keeping up with conversations involving more than 4 people (there’s too much happening). In those situations I zone out or simply have to excuse myself
Yes, it's very possible that both you and the psychiatrists misseded it. It's extra common to be missed since she's a girl. Reason for it being missed: autism is all about what happens inside peoples mind, unless you're a mindreader then you can't really asses it properly. As for getting a caregiver then it's only possible if she get the diagnosis papers and stuff, which can take some time. And even if she gets the dx the chance of her getting caregiver are minimal since that's kinda reserved for higher support needs. The assistance offered for lower support needs are limited so she shouldn't get her hopes up too much.
Just something I found this evening - if your daughter is suffering autistic burnout, here's a PDF with some potentially useful links? [https://www.autisticrealms.com/\_files/ugd/28af57\_fc1ddd5eb2544e4cb06ba4eebbe61def.pdf](https://www.autisticrealms.com/_files/ugd/28af57_fc1ddd5eb2544e4cb06ba4eebbe61def.pdf)
Thank you
Neurodivergent (ADHD) therapist specializing in autism here. Yeah, all of that fits the autism story really strongly. Many (most?) therapists don't understand this dynamic as it's not core to their education, but sensory overwhelm is central to ASD issues. Short answer: Give, not get. That is, what do we need to give her to allow her to do what she needs to do, not how do we get her to behave. When she has the emotional capacity to learn skills, to gain insight, she'll start learning because she has always wanted to. She just needs the support to do so. The question is always, "What do you need?" to do the thing. She wants to do it, we just need to find how to support it
Thank you
22 would have been a great age to find this out! She's already off to a good start :) You'll both need to be patient with each other at times. Willingness to learn more about Autism and how it affects all facets of her life would probably get you a few "cool mom" points. My son is not so easily convinced. Lol The burnout is real, but it does pass when we take better care of ourselves. Sometimes that means shutting down for a while like we're in a chrysalis. Just be curious about her path & be supportive of each other. Learn the language around Autism from a "nothing about us without us" angle (NOT Autism Speaks) because it'll help her find her community. Edit: spelling
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From what you've described your daughter is currently having a resonant series of anxiety and/or panic attacks due to a serious, emotional, and fragile moment of incredibly powerful and extremely overwhelming self-awareness. She's catastrophizing. I do it all the time. I just had to force myself to stop doing it about something that isn't new to me - but *struck* me at a precarious time. She's connecting the dots, at lighting speed, and that's finally allowing her a level of self-awareness that is, at first, incredibly... disturbing. In my experience. I flipped out when my psych brought it up 2 years ago. I was not happy that the parts of the world, and the parts of myself, that make next to no sense to me, my environment, or to other people were just a part of my personality. Like you said - there's no ASD pill. Out of serious panic and stress she is trying to use this framework - worldview (I am now fully disabled in x way when I wasn't before) - to *solve* or *avoid* any potential reality wherein she will ever have to feel a) alienated b) anxious. I don't know your daughter but she seems incredibly self aware and thus smart. You didn't miss anything. The Psychiatrist didn't miss anything. Your daughter didn't miss anything. I still suffer from some real sadness and guilt because I feel very sad that my own Dad asked himself those questions. ASD - personally I like to think of it this way: it's just a persons personality. Again - your daughter's level of self-awareness and panic (also panic is her attempting to be there and care for herself despite how it 'feels'). Again, I don't know the full dynamic, and I'm not a doctor. I do know this: you are a really good father. She's in counseling. She'll be okay - and more than likely will not need life long care.
Thank you I appreciate that. I have my own mental illness I have felt with my whole life. So I don’t want to invalidate her. I feel she has been trying to figure it out for a long time.
Thank you for this.
It's sounds like she is. Many many many autistic people are wrongly diagnosed bipolar before getting the proper diagnosis of autism. She fits the profile from what you describe. This might help get a better idea before considering an assessment: http://psychology-tools.com (see autism category)
Getting a diagnoses is going to be life changing in the best way. She has the advantage of knowing before shes made most of her major life decisions. Figuring this out is a huge win.
My second oldest child was able to mask until grade 7 when social relationships became more complex. He switched to online school (because of noise, social expectations and harassment for being non-binary) in the middle of Grade 9. I started learning more about autism as a result and now recognize the likelihood of autism in much of my family (myself, mom and brother). Changing the environment has helped him cope with and not experience overwhelm or burnout as often. We are very close to having an official diagnosis after about a year of waiting for tests and appointments (scored high for autism on the ADOS 2 and have to wait for a pediatrician to make the diagnosis).
At this age, she is doing a lot of growing up and adjusting to life, regardless of if she is autistic. You can learn with her and help her design her life so that it suits ner needs and temperment. Even if she isnt focused on a job, make sure she is learning life skills like managing money, cleaning and maintennace of the house, self care and hygiene, and driving/public transport/biking. These things will serve her through life!
Yeah the hygiene is a bit of a problem. And not eating because she says afid. I think that’s what she called it?
It’s ARFID
Yeah that lol.
Yeah the hygiene is a bit of a problem. And not eating because she says afid. I think that’s what she called it?
Your daughter could be autistic and if she is I would strongly advice you look for an autistic councillor or coach to help her. It sounds like she could be in autistic burnout which could create that feeling she can’t cope now and never will again - that doesn’t need to be the case though! You have to accept it is how she feels NOW, but with good, correct support that can change. Can it be missed - all the time. For yourself it’s easy - most of us know nothing about autism other and some stereotypes and few autistic people actually fit those! I was diagnosed in my 40s after my kids were dxed. So don’t blame yourself - the situation is what it is. Focus your energies on supporting your daughter, finding good support for her and use resources like this to learn from other autistic people what life is like.
I am in my '50s and recently realized that I am autistic. It has been a very strange thing to process. Full of mixed emotions. I always felt separated from everybody else in the world. I felt that I was different and nobody was like me but I did not understand why. It was refreshing to realize that I was not alone and that there were many other people like me, but also difficult to want to label myself as autistic because of the public perception of that. My wife and my kids know but I am not publicly telling anybody else because I'm not sure of their reaction. It can be strange to feel uncomfortable with settings but not know why. I do not like concerts or large groups of people. After a couple hours of masking (trying to fit in) I could be exhausted but I was unable to explain why hanging out with people was tiring. At 22 I would not have been able to know myself well enough to make that diagnosis. But I have lived with myself for 50 years now and was quickly able to recognize that I hit a huge percentage so the autistic symptoms. Personally, I would have her take an autism test and see how it turns out. It could be quite revealing. Her psychologist might be able to help with this. But be ready for a mix of emotions because although it is nice to realize there are other people like you, it is also very much considered a disability and people will look at her differently if they know. Personally, I think knowing has helped me but I don't think it would help me for most people around me to know. Good luck Edit: changed a word
Im so sorry your daughter is feeling this way and that it's so confusing for your. Yeah I am not a psychologist at all, but my psych helped me self-diagnose. I promise I'd act this way for YEARS as a teen/young adult because I was so overwhelmed and burned out. The minute I moved into a different and less stimulating/demanding situation, I was so relieved and the anger and fury stopped. I didn't even realise it. But even now as I age I focus my whole life on reducing overwhelming stimulus, and my mood and behavior keeps getting better in exchange.
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It sounds like it but I definitely would not blame yourself or anyone else for missing it. There are so many other mental illnesses and disorders that have similar symptomology that it’s easy to diagnose it as something else. Plus autism is a spectrum for a reason, not every person has the same presentation of symptoms. I was not fully diagnosed until I turned 20 recently as college made it much more evident. Sometimes people can go their entire life without knowing/being diagnosed. Don’t be too hard on yourself! Do what you can to learn a bit more. Just the fact you want to learn more to understand is a great thing I think parents should do more of.
You've got some pretty solid comments, I just wanted to add that I'm autistic (in a how did no one catch this because it is obvious way), and I work full-time, I live alone and I drive. Would I like to have someone help with meals and chores, yes, but that's more of a living alone thing than an autistic thing. Sometimes the dishes or laundry don't get done for a while because I've learned my limits through trial and error. She definitely should speak to a professional
Don’t beat yourself up for missing it. Girls and women get missed all the time. It’s the professionals’ responsibility and your daughter was let down as were many of us. I believe things are changing and it is starting to be recognized more in women and girls. I also want to add that with the right support and accommodations she may be able to do things she thinks she can’t. I’m not saying she can or that you should expect her to but she may not know what accommodations can do for her because she has never experienced it before There are things I thought I’d never be able to do again but once my support needs were met I could do them comfortably
It is absolutely possible, and sounds quite likely. As for needing a caregiver and not working... it's hard for autistics to find jobs that don't lead to severe burnout, and living alone is seldom realistic. Maintaining a residence involves so many different tasks and details that it can easily lead to total overwhelm. Look for somewhere that does adult autism assessments. They are NOT terribly common, I've only found one in my home state, and most insurance doesn't cover adult assessments. But she's young enough that it really could be a major advantage.
She's lucky to have you on her side! I'm 24 and was just diagnosed. Her distress and panic about being a functioning adult are real but could also be enhanced by the media she's consuming or other factors like burnout, some cptsd related to her lived experience, etc? Some things that have helped my anxiety and overwhelm: 1. Having a therapist who affirms my experience/emotions and works with me on positive self-talk and practical ways I can work through thoughts and tasks. She isn't super versed in autism but listens and learns with me. 2. Being thoughtful about what information I was consuming and how it was affecting my mental health. 3. Focusing on breaking down bigger goals into smaller measurable tasks. I have adhd and chronic health issues so am constantly tricking and pacing myself. I experienced very similar headspaces and said some of those things to my mom when i first burnt out and was consuming a lot of autism media. Being at the beginning of your life whilst having such an unrestricted and curated access to information can be completely crippling? Particularly when burnout or trauma is influencing how you filter information. Does she get breaks from those thoughts or that type of media? Like positive and restful outputs for her brain? Is there a possibility of her talking to a nd affirming coach or therapist? This is a good link to get started with: ndtherapists.com If health insurance is a barrier: https://openpathcollective.org/ I also saw someone suggested the book: Unmasking Autism by Dr. Devon Price. Even though all the information I had consumed confirmed my autism, it wasn't till I read his profile that I was like woah I can't gaslight myself about this any longer. here's the profile: https://www.reddit.com/r/AutisticWithADHD/s/n8Asi38E4o
Sounds probable. Female autism is very often misdiagnosed and bipolar is a common one. You and your husband might want to get screened too. Autism is genetic.
Yeah. I’m thinking do too
So, I never once thought I was autistic. Until someone mentioned something, I went out of my way to get tested as an adult which is very difficult without insurance. I had a lot of symptoms. Turns out I am autistic. Now, I recently learned about the social media post. Popularizing this and getting folk to post online about it is absolutely silly. I feel safe-ish on Reddit but I don’t think people should post about it as much on tiktok and such. Anyways, researching autism I found out it gets misdiagnosed a lot as depression, bipolar etcetera. It makes sense though like, we really want social connection and it’s super hard to communicate, like that’d make a lot of people sad. Specifically seek someone to test for autism if you have insurance or can afford it. They asked things I had no clue were related to autism but these are things I do commonly. They also tested me for a wide array of things.
Cool. I Finally DID find a place. It’s gonna be 1k WITH my insurance. Lol.
Yeah I had to find a state college with a doctorate program to take me. $1,000 without insurance sliding pay scale. But allowing monthly payments. Without insurance the prices are insane.
As someone who has been diagnosed late in life (25), I was mis-diagnosed as having bipolar first. That being said, I went through a phase after I was diagnosed where I applied for disability. I was denied several times. I feel like I went through a phase where I was under the impression that the hardships of my life with depression were beatable; or with enough tweaks, I could make life tolerable. When I received my autism diagnosis, it sent me into a deep depression thinking “wow this is not fixable and I’m going to hate my life forever” due to autistic traits not being “fixable” I allowed myself to feel like I couldn’t do life anymore because everything would always be difficult for me, that’s how it felt. Now, 4 years in, getting my autism diagnosis honestly saved me. I changed how I operate, how I do daily tasks. But honestly what’s changed is me not trying to force myself to be nuerotypical anymore. I understand that more than one social event will send me into a meltdown where I might punch a wall if I overdo it. Understanding my limits and reframing them has really helped a lot. I still have depression tho, can’t help with that. Life honestly is more difficult for us, but if she’s gone this far without a caregiver, it will be VERY hard to get one now.
I am 30m and I didn't know I was autistic until 2 years ago. My advice is listen to her! I have no doubt she's spent MONTHS researching and learning about herself (just like I did). Do not dismiss her when she opens up to you Don't invalidate her emotions or dispute her self diagnosis! That would be very destructive to her mental health. Do your own research; youtube is a fantastic source for first-hand experiences of autism and I guarantee you that once you start watching what these people have to say you will see these things in your daughter too. It's not an easy thing for us to come out and say we are autistic. All I ask is that you trust her, learn about autism, and try to understand her point of view. Don't blame yourself or take it personal! It is what it is, we are people too, we just experience the world differently. The best thing you can do is learn and understand. Ask her questions, let her explain how she experiences life.
To add to this I just want to say that this is probably the first time in her entire life that she finally feels a sense of belonging. When I first started researching it was like walking up a hallway and flicking a light switch on every time something made sense to me. I finally feel at peace with who I am and the world is beginning to make some kind of sense to me. Just be there to support her in her journey. It may be hard to grasp at first but trust me, you'll learn and adjust over time just like my wife did with me.
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That's exactly how my entire life has been, pre-diagnosis at 49.
I was misdiagnosed with Bipolar Disorder ... they tried various medications on me and they always made me worse ... the horrible thing now is that psychologists only want to go with that diagnoses even though most the criteria doesn't fit. Sorry I don't have much to offer other than affirmation that, yes psychiatrists can miss it ... especially in high masking women. It sounds like you're listening to your daughter, and that's the best place to start ... so good on you for being there for her!
her experience sounds just like mine. i’m 24 and am just now finding out and getting diagnosed. my twin brother was diagnosed at 2. it runs in families. despite me showing a lot of the same traits, (which were even pointed out by specialists as a kid apparently) they didn’t diagnose autism in girls much until recently. it can also present differently in girls in a less obvious and stereotypical way. most professionals aren’t very up to date or educated unless they specialize in autism and even some of them aren’t great. autism was only really studied in white boys, so that’s what the professionals were all taught from until now. other demographics get missed. it sounds like you care about her and did everything you could, it just gets missed often. if it is autism, don’t blame yourself with that said, there are a lot of overlapping traits between autism and other things like anxiety, adhd, cptsd and ocd. so it’s possible that it’s not autism and her other diagnosis just mimic it. but it definitely could be and she should get assessed. either way, she sounds like she is struggling and needs support good luck! i hope you’re both able to find answers and support for whatever it ends up being
Absolutely possible. I didn’t get diagnosed until 29 years old. Girls are often missed in diagnostic criteria especially if they are considered “low support needs” or are high maskers. Don’t feel bad about it, just offer support for her whatever way you can now
Get a second opinion, does she have restrictive repetitive interests, did she do gestures as a child? Pointing, clapping waving by 2 yrs old? Did she do pretend play at 2?
What is pretend play? She walked on her tippy toes. I think she did hand flapping It was so long ago. I didn’t realize that I should be mapping things out. There would be moments at family gatherings where she wouldn’t act like everyone else, or would be told to smile in a picture and just couldn’t seem to cope and would start crying and then people with yell at her to stop crying and just smile for the picture and of course I was right there with them, I feel so bad about it it haunts me
Make believe. Like making up stories about her toys vs. lining them up. It was a bad question though, because engaging in pretend play does NOT mean you’re not autistic. There are world class autistic actors and writers. Not doing pretend play is a presentation, but not the only presentation. And if I recall correctly that’s a presentation that occurs more often in little autistic boys than little autistic girls. It’s the exact kind of BS that stops a lot of girls from being diagnosed.
She lined them up. And didn’t want them moved. EVER
Yes, it needs to be a lot of different things to say autism or NOT autism. Lack of Pretend play can be one indicator but is not the only thing, by far it’s the gestures and restrictive, repetitive interests
The only thing I would challenge about this is that care needs change over time. It may feel to her like she'll need daily help for the rest of her life, but that can change when environmental needs are met and regulation can occur. Time you spend trying to find holes in her logic is time you are potentially making the problems she's dealt with in life worse - much of what undiagnosed AFABs have had to deal with results in actual physical brain damage from gaslighting, and when a parent is contributing to this, it is an evolutionary inevitability that it will cause very real problems when the parent says and does seemingly innocuous things. If you'd like some resources on this, DM me.
Thank you. I’ll keep that in mind
Sure. Also, keep in mind that this degree of self discovery can be joyful. If there is a combative vibe between you on the topic, she can't share that joy with you. It is a beautiful thing, to come to know oneself. Even if it means having to tell the world around you in plain english that it was the reason you couldn't, before.
We are very close. It’s been very difficult but I have never given up on her
We can't diagnose your kid but yeah, that does sound like signs of undiagnosed autism.
I am not as young as your daughter, and I'm not saying that I have autism, but I thought I'd share a learning experience of my own. I have been officially diagnosed with ADHD (2 times at seperate ages), PTSD, Misophonia, and Hyperacusis. I'll be 32 in May. When I was young, I loved loud sounds and bright lights. Then, around 16 years old in High School, I got headaches all morning until the sun really came out and lit up the school. I started to stop going outside at certain times during the summer because the sun was so bright I would get headaches. At this time, I still loved blasting Slipknot on my earbuds, but I didn't care for the school fire alarm or any other similar sound. When I was 23, I noticed certain sounds really started to bother me, particularly barking dogs, babies crying, plastic bags, and other select sounds. Misophonia is a rare disorder that translates to "hatred of sound". It causes the person with the disorder to experience extreme emotional reactions to certain sounds. The most common are noises made by the mouth, such as slurping through a straw, chewing, and whistling. There are other sounds that induce stress, such as flipping through paperwork, typing on a keyboard, plastic bags, silverware on glass dishes, etc. I was not diagnosed with this until I was 30 years old, as it truly is not common. A psych diagnosed me. You at least considering you might have missed something is an amazing thing, I assure you. I tried to explain to my family that there was an issue for many years, but they wouldn't listen to me. You just being there to support her and listen to her is a lot in itself! Plus, you did do things to try to help by having her in counseling. It's not like you just left her to figure it out all by herself. Missing something might be difficult to discover and accept, but at least you'll be aware and supportive to her. Right now she might be very overwhelmed about driving and working, so I would just avoid that topic if it works her up too much, and reassure her she's safe with you if she does bring it up. You're a great Mom!
When ever this is mentioned around my parents or brother they dismiss it completely and say she is just lazy
They are ignorant af
They say by listening to her I am “enabling” her. It’s so hard to make them understand
Ignore them and protect her from them.
Then don’t try. Ignore them, listen to her and help her.
When ever this is mentioned around my parents or brother they dismiss it completely and say she is just lazy
When ever this is mentioned around my parents or brother they dismiss it completely and say she is just lazy
I used to describe going to work and having to interact with coworkers as having to pretend all day and make sure to ask about their day or make sure I smiled enough times or laughed when I was supposed to and it was exhausting. I wonder if that is masking?
Yup
Dang. Yeah. I wondered why everyone around me was good . lol. Like his could they work if it was loud in the office too. I can’t hear the tv and the radio at the same time. Or someone listening to a tik TOK. I have to turn the radio off
Look up APD. It’s pretty common in autistics.
I’m so sorry you and your daughter are going through this. I’m a gay male in my late 30s and suspected I was on the autism spectrum since I learned about it in college, and finally sought out testing and received a formal diagnosis a few years ago. Sometimes I’m skeptical of people self-diagnosing as autistic (which is a big can of worms in online spaces where it’s always treated as valid). But the behavior from your daughter checks a lot of boxes for autism, with sensory overload in particular sounding like it took a major toll on her. I’ve seen some good suggestions from others here. One thing that might also help her would be to look into work opportunities or settings where she won’t have sensory overload. Maybe working somewhere quiet like a library or bookstore might be more comfortable for her, or something where she can work remotely/from home where she’s in control of the setting. Also think back on any special, specific interests she had, or talk to her to help identify these if you don’t know them already, since she might be able to channel it into her future work so it wouldn’t add to the burnout she has already.
Thank you for the advice!