Executive Function issues. I knew about the social stuff, and had learned a fair bit about the sensory stuff (and my parents knew and understood my more obvious sensory issues), but I had no idea about the #ExecutiveDysfunction or how much it affected. #ActuallyAutistic
Yes, that’s part of it. The effects can be subtle or not, but when you live with it, you don’t necessarily notice them unless someone brings it to your attention. And it can be frustrating, especially if someone doesn’t (or, even worse, *you don’t*) understand this is….
Gah. See the tweets I just sent about what I’ve heard of recent research. Plus you can work on forming habits (takes at least 6 weeks to form for neurotypical brains, may or may not for us)… but in a lot of cases I personally know of, you need workarounds. ….
I did a presentation on sensory issues to a provincial research group here in Newfoundland, and I’m planning to do another one soon on executive function/dysfunction; if anyone else wants to contribute thoughts about dealing with EF issues, I’d love to know what helps you!
I should’ve protected my dx more closely, especially in the workplace. & I shouldn’t have expected this missing info to help repair previously-severed social relationships with those who found me exhausting: Oh, she’s autistic! All is forgiven. — Yeah, that never happened.
A retired co-worker told me that our boss at the time, snidely announced to the staff that I had “mental problems” & wouldn’t be expected to attend staff meetings! She would have been in sooooooo much trouble with her bosses, had I heard of that incident soon enough to act.
yeah I overshare too. but it’s hard to not say I’m autistic when I’m talking about Mini. too many people want to say “I’m sorry to hear she is has autism” and I don’t want her hearing that all the time. so I say I am too. but I know people will think I just want to talk about me
That it was completely reasonable for me to be anxious and that I was very brave to withstand the sensory bombardment I did, and that it wasn’t all in my head, and I was not being “too” sensitive. That my experience of life is valid even if other people don’t believe it.
^THIS; a thousand times: This. Without delving-into bitterness about it, I CAN say that my experience within my family was defined-by my not being into competitive sports, not being an extrovert, and by my propensity to enjoy reading (and remembering almost everything read).
That taking the mask off draws the circle in tighter and tighter… and actually, I really don’t mind it. What I really wish, is that I’d known I was autistic as a child. Fifty three years is a long time to feel you need fixing.
I understand the circle now. Mine has got smaller and smaller too. And I was trying to explain to my GP and therapist the dramatic reduction in my ability to cope with stress eg socialising, or work with age.
I think it’s a combination of just getting bone-tired, the adrenals being on high alert all the time, and no longer giving a stuff because we’ve seen it all before, and know that nothing really seems to change whatever we do so we lose any incentive to mask the stress any longer.
I see where you’re coming from. But we should never have to mask who we are for the sake of helping society. Yes, some compromises are necessary, but what’s needed is a greater acceptance of autism, not a greater conformity of Autistics.
I didn’t find out I was Autistic until my late 30s, and the hardest part was learning about masking – or rather – learning how to unmask and unlearn a lot of the things I did to hide my symptoms that had become unhealthy habits and created lots of stress and anxiety in my life.
I was always shuffled around from school to school with no clear diagnosis for my symptoms. I learned to speak a year later than most toddlers and because of that I started school later than most kids who often used it as an excuse to claim I flunked pre-school and mock me.
By the time I was in first grade, my father left my mother and I, my mother institutionalized me (twice), and by junior high I was placed in a special county school for “emotionally disturbed children.” Because I could talk and articulate so well, no one suspected Autism.
I had diagnoses that ran the gamut of ADD/ADHD/Aspergers and Manic/Major Depressive Disorder because my entire childhood was just one long episode of “you are stupid/crazy and belong in a facility”. My mom did the best she could with the bad information she was given.
During that whole time I was desperately trying to fit in; observing others, practicing conversations I had no interest in just to be “likeable” and not branded like the list of labels I had endured as a kid so that I could hopefully hold a job and not be dependent on anyone.
Understanding what masking was and why it was destroying my life is when things finally changed. I’m still recovering, still learning about myself, my past finally makes sense, and I’m starting to forgive myself and not be so hard on myself when I mess up or have a meltdown.
If I had known – if my parents had known – what we all collectively know now, life could have been so different (to say it would have been ‘better’ is subjective), but I guess now it allows me to be a real advocate for myself and others. I hope my experience helps someone else.
Not to bother with all those creepy books by NTs explaining autism, but to go straight to places like ASAN for information. This first books I read were so bad that Tony Attwood seemed really good in comparison!
In teaching Autistic students, I found that students who had been repeatedly misdiagnosed or had years of being undiagnosed & enduring their own & family frustration also had symptoms of trauma to deal with on top of finding strategies to cope while also finding their own voices.
I found that I needed to rely on both all I could learn about PTSD & Autism to help teach the children & their families. A later/adult diagnosis is difficult, but I’d wish all an old trope from 12 step programs: “One day at a time.” Allow yourself to work through changes.
That I wasn’t a “better” autistic person than those who have intellectual disabilities or are completely nonverbal etc. It took time to detox from the whole “oh you have ASPERGERS so you’re just clever and quirky, not like the really disabled ppl”.
Exactly. But if you start to unlearn masking and passing behaviors that are actively harmful, people act as if you are devolving by becoming “less functioning” and shame you for that too. We can’t win -_-
The sheer lack of adult resources, services, and options for help as an aspie. I’d have never started asking for help, information, options, if I had known they just don’t exist. It is just chasing a questing beast. #ActuallyAutistic#askingautistics
I hear you. The single best resource I’ve found has been other Aspies, online and in person. Formal guidance and services are relatively few, but the ideas I’ve gotten from within the “tribe” have been invaluable. Old-style forums & Quora have been especially helpful.
My mother also doesn’t respect my Autism diagnosis – she says it’s just depression and that I need to go to church to be happy. So yeah, I know a little about how family can be resistant and fail to support you in the ways you need it most. I’m sorry this happens to you.
That autism (in my case, Asperger’s) manifests somewhat differently in women, and differently across individuals generally. I thought the literature was perfect, so I dismissed that I could actually be on the spectrum.
That we mask for other people’s benefit not our own. I thought for so long that other people feeling comfortable around me benefitted me despite having to mask and it literally doesn’t. If they don’t like me as I am they don’t like me and I won’t waste my time :p
I wish I better understood that the general perception of #autism meant that people wouldn’t be anywhere as excited as I was to discover this huge news about me in the world. Man I was disappointed in people for a while there.
That I didn’t have to smile on command. And that I could just walk away from stressful social encounters and hang out with people who were supportive and accepting. As Sara Ahmed says, we owe happiness to no one.
I wish I knew other autistic people who weren’t the stereotype. I was so scared I wouldn’t be able to function inlife because all adults were saying was I didn’t have to learn more than basic self care like tying my shoes and dressing myself because I’d never do more.
Being diagnosed as a child (diagnosed in preschool) definitely set back my edu. That diagnosed got me put in a box & in low functioning special edu, which is why my Mom pulled me out of public school. By 2nd grade, I hadn’t even taken a math class or reading.
The Social Model of Disability – which for anyone that doesn’t know is a definition that means people aren’t disabled by their impairments (such as Autism) but by the barriers society puts in their way
i wish i knew that all the learned masking and coping that i’ve taught myself to do doesn’t make me less valid or my disability less real i still wish i knew where and how to access resources as an adult but i also am so glad that i found community and resources online ♡
i also wish i knew that just because i figured out quite early on, fighting through my internalized ableism, that actually being Autistic is cool and it’s part of me and always has been and is just as loveable and good as everything else .. that other people/jobs dont ..get that
I was really forthright about my disability stuff because I thought it was neat–my newfound selflove and confidence, that actually my disability sometimes makes me extra good at specific things (and always did). but people dont care about that and i found out the hard way 😦
That ‘experts’ in the Mental Health fields get so much wrong. Its such a relief to share experiences with autistic people and know I am similar to them despite what the experts say. Especially about empathy and communication.
A friend suggested I was autistic in 1976, but no one diagnosed me. Other people, not friends, suggest I am bi-polar, schizophrenic, manic depressive, etc. Not helpful. Reading about neurodivergent/autistic etc. is an eye-opener. I’m 61, and have revelations daily. Thanks.
That other people see “different” negatively, but being different in this way is definitely an asset once you understand your autism. There are lots of NT people in the world who think “typical” is what everyone should aspire to, but I don’t in any aspect of my life, so¯\_(ツ)_/¯
I’m late but: that my meltdowns weren’t because I have no emotional control but because I got overloaded and no one would/could help me. And that one can be AFAB, autistic, and transmasculine without my trans identity and my being autistic cancelling each other out.
There is a big difference between coping and thriving. I coped with life until I reached life event burn out (treated as anxiety and depression) – that was the cost of masking and trying to fit in. Thriving comes about with accommodations and acceptance. It is a fulfilled life.
What autistic burnout was. I was currently experiencing it when I realized I was autistic and was spiralling and failing college and was ashamed and it would have been wonderful to know what was happening and how I could manage/heal it.
What I defined as ‘normal’ others may see it as abdormal or indifferent and what I saw as abnormal others saw it as normal. I still struggle with social stuff and have gone from being an introvert to an extrovert to back being an introvert again over the years
I wish that I had been diagnosed BEFORE my daughter. It was very very confusing and triggering to watch all the teachers freak out about her differences when she seemed so normal to me—normal it turns out for both of us is autistic. I’m in the lost generation and that was hard.
Probably about burnouts… I went through a really bad burnout throughout the last year of school, and it really hit my ability to function. I was lucky I didn’t fail tbh, I was having regular meltdowns and had lots of trouble functioning in classes…
What autism is! I only got misinformation and mistreatment upon being diagnosed. It wasn’t until I found the #ActuallyAutistic community that I even accepted my diagnoses and started learning how to deal with my limitations… AND strengths!
The label came much later after a lot of development etc, so it was kind of the reverse for me. I wish I had know I was autistic sooner, so I could have focused my efforts differently in improving my mental health, and capacity to function in society.
I wasn’t diagnosed until my 50s I wad born in 1947 long before Aspergers was even on the menu, so nobody suspected #autism. I wish I had known more about facial expressions, and body language. School was hell because everyone had this “secret language.”
That I also have Crohn’s Disease. But if it has to be about autism, then I’d have to say that I wish someone told me ‘look up the word neurodiversity on Google, and also you should really go to the AIC, they can help you a lot, and apply for WaJong and PGB while you still can.’
That my husband also was! (In fact he was formally diagnosed as autistic when I was a couple of years into discovering that I was, and it almost felt as if he was stealing my thunder, but once we’d “come out” to each other everything became much better)
I would probably say I wish that, I wouldn’t Had made excuses to have Autism be the Cover for my reasons to why my personal self/things go bad. I wish I would’ve had found out about Autism a lot more earlier and not waiting until 4th grade when times got dark.
That burnout exists. I would have done so many things different in high school had I known just how far-reaching the effects of the burnout I suffered then would be. I’m not sure I’ll ever be the same person I was before the burnout hit.
I was born in the wrong time for support. Same with our eldest son. So knowing might have been worse because there was no twitter, no internet. It would have been bad to feel my brain was wrong and not be able to reach out and find others.
The importance of your day to day environment and how a good one can make you feel you aren’t disabled at all and a bad one can be an insidious nightmare that slowly exacerbates all you problems beneath the surface before you can even identify why.
To this day, I don’t know what most of the ‘smileys” stand for. I know a smile, frown, angry “grrr” face, a laugh, crying. But the subtler ones are a mystery. What do all these mean? How are they different?)
The local NHS where I am decide that Asperger’s isn’t a separate condition so I was initially diagnosed with OCD and had to travel quite far to find a doctor who’d consider Asperger’s. Wish I’d known that these differences existed!
to be honest? that being autistic wasn’t synonymous with unintelligent, (at least in the way most people think being ‘intelligent’ means) i was diagnosed in 7th grade after i failed multiple classes in a prep school, after being a “gifted child” for all of elementary —
“Gifted and Talented” – That was the group I was put into at primary school and then when I got to Secondary I had to work even harder on my mask to survive in a much more overwhelming environment… I was still intelligent but couldn’t process as well
I wish I had known more about social masking. I had gotten to the point where I didn’t even realize I was masking, and it was damaging my mental health (i.e. trying to ‘get over it’ when I was experiencing sensory overload). Now I just shamelessly put on my headphones when I am.