Is there value in a formal diagnosis? As far as I've been able to find, there's no treatment, there's nothing that will change the way my brain works. It seems like it's just getting a (fairly subjective) stamp of approval. And my GP is sort of an asshat, I won't even talk to him about sleep issues, I certainly wouldn't bring up something like this. Are there benefits I haven't found?
@ScottSoCal @actuallyautistic
In the US, as an adult, possibly not. There are no supports for us, only stigma.
That said, I got a formal diagnosis because I was anxious about being a fraud. The validation was enormously helpful to me.
OK, I can see that. I'm not 100% sure this is me - although I tick most of the boxes on the "signs of" checklists. And thinking about this has made a lot of the last 50+ years make sense, where it didn't before. When I first heard of Asperger Syndrome, I wondered. Reading here, I find there are names for things about me (hyperlexia) that I didn't have before.
I'm 99% sure. I think 99% might be enough. Now I'm dealing with the self-image adjustment.
Ah!
"I tick most of the boxes"
"I wonder"
"Not 100% sure"
Welcome, Scott! Welcome!
This place is called "Impostor Syndrome Cave", and people like you and me, "possibly" un-dx'd autistics, spend a whole lot of time!
When you see a list of autistic traits and you don't check one of them, you go back to the bottom of the cave!
It's like a roller-coaster, but you push the cart yourself uphill and don't quite enjoy the ride down.
But still, welcome!
😉
@ScottSoCal @f1337 @actuallyautistic
Seriously, impostor syndrome seems to be extremely prevalent in un-diagnosed autistic people.
Even diagnosed people seem to go through it from time to time, since science is kind of sketchy and professionals have uneven skills, even an official dx is not sure to bring you peace of mind.
Not trying to push you one way or another, just know your doubts might still remain after dx.
Mind you, I'm probably getting an assessment anyway.
@ScottSoCal @f1337 @actuallyautistic Someone on Mastodon wisely observed that if you talk to #actuallyautistic people and the things they say about their struggles and experiences sound exactly like yours, there's probably a reason for that.
@lmgenealogy @ScottSoCal @f1337 @actuallyautistic oh yeah. Totally. My youngest son was diagnosed at 3 years old and as I observed his behavior growing up I was like...wait...was this me at his age? I think it was.
He apparently had a lot of internal dialogue that he later described to me when he was more verbal and able to communicate and I was like. Oh.
I never realized I had those same internal dialogues or outward behavior.
I thought I just had social anxiety, but desperately wanted to connect with people who ultimately thought my behavior was weird.
Now I'm like...ok, it's really cool that he gets a jump start on building coping skills and communication. It took me forever to obtain that.
@lmgenealogy @ScottSoCal @f1337 @actuallyautistic Ah, yes. The classic "Either autistic people have to stop being so relatable or I should probably talk to my therapist."
@joshsusser @ScottSoCal @f1337 @actuallyautistic Lol! Yes, that’s what we’re known for, isn’t it? Being so relatable.
@ScottSoCal @f1337 @actuallyautistic
I don't really mind if I would be medically diagnosed as #actualautistic or not. I recognise so many traits in me and family members that I have enough to be getting on with. I understand the need for confirmation by many people, but once retired from work I am not sure what the benefit is.
@ScottSoCal @f1337 @actuallyautistic It's a tough call. In many ways I'm glad I got confirmation of my 99% certain self dx.
That self awareness & understanding of why life was so hard was vitally important. In many ways it's helped me access the limited support & some understanding.
Why I think you might consider only self DX & forgo officialdom's stamp.
Well because seriously harmful myths are held by just about everyone on what autism is. Most hurtfully & surprisingly are the "experts" & other medical staff.
A psychologist who was providing support for chronic pain & disability wrote in their final letter that autistic people don't have emotions!
You'll find that even if you're doing the same job you've always done post DX you'll often be viewed as incompetent or incapable. Perhaps you'll find someone who understands & accepts you & your unique flavour of autism but they'll be rare.
I would say knowing thyself is important & stick with it. Having a DX can give leeway in situations but it also conjures up ignorant prejudice in others.
I'm glad I found out in my late 30s & I'm loud & proud about being autistic but it's not for everyone. One thing I guarantee once you start to connect with others like you, you'll no longer feel alone & weird & instead have millions of people around the world who just get you. That alone is worth it.
Best of luck in your journey of self discovery. Trust in yourself. Nobody wants to find out they've got a delayed developmental condition but it's so much more than that. There are aspects of being autistic that make all the struggle worth it.
One being that there are so many incredible, kind & intelligent autistic folk out there. Follow the #ActuallyAutistic # to connect with some of the finest.
Getting a late autism diagnosis
@ScottSoCal @actuallyautistic
@adelinej
Late diagnosed, age 45, I hesitated for a couple of years : I've got a job and a wife, I thought it wouldn't change anything.
I went through yet another burnout at work, and thought a diagnosis might be useful to explain to others.
I was wrong. When the doctor confirmed it, it hit me hard : I nearly cried and it was like a weight had lifted. It took me two years or so to fully accept and to work through the feelings involved. I was finally able to forgive my past self for all the errors and mistakes, and it improved my mental health hugely: I knew what I would have problems with, and what I could do well.
These days I am *so* much better at managing it than back then : more energy, 'giving in' to the autism where it doesn't matter and saving my energy to mask when required.
If you are thinking about going for a diagnosis, I would think hard on the impact on you (yeah, this is hard for us, social imagination and interoception will make this difficult).
It can make a difference to close friends and family, giving the reason 'why' you can be difficult : but the impact on how you feel about yourself can be huge.
In the UK, all health authorities are required to provide an adult diagnosis service: most need a GP recommendation but you can change GPs, or send them a letter with several self-assessment scores (written can be easier to explain all at once)
https://www.nhs.uk/conditions/autism/getting-diagnosed/how-to-get-diagnosed/
Getting a late autism diagnosis
@RenoirDana @ScottSoCal @actuallyautistic @adelinej I'm 45 this August and have just started this process a couple of weeks ago. I am finding a ridiculous amount of evidence from all areas of my life. I just thought I was a bit odd. Now I have answers. A formal DX will probably take a while, but at this stage, that seems somewhat redundant. The evidence is a bit overwhelming.
@ScottSoCal @actuallyautistic Even when there isn't a treatment there may be other value.
I've been struggling a lot with sleep and the doctor basically said unless it is tied to anxiety he can't give me anything.
As soon as I had the diagnosis (and suspected ADHD) he has given me melatonin which has made it much more bearable.
@ScottSoCal @actuallyautistic
For me, my diagnosis was important:
I thought I was that good at masking that it would be extremely difficult to see my true me, being an autistic individual. Turned out that it was so clear for every involved during the process. No psy or doctor was unsure, there was no doubt.
It made me think about my self-harming efforts of masking. I'm frigging autistic, I should live a healthy autistic life.
My diagnosis was a wake-up call.
I'm ADHD and autistic, also have (self-dx) C-PTSD. There is so much going on with all of these different traits, and I feel so unusual, that I found value to getting a formal diagnosis of ADHD and Autism.
I experience a great deal of self-doubt and constantly find myself rethinking everything, everyday.
So despite having thoroughly diagnosed myself, with great detail and writing over 100 pages of diagnostic notes, spending years to increase certainty, I did want to get professionally diagnosed.
And despite STILL rethinking everything everyday, it has helped me be more settled with the diagnostic report.
But if you don't go through all that constant self-doubt and constant questioning, then I don't see the need to get professionally assessed. Self-assessment is valid, and reliable.
@obrerx @ScottSoCal @actuallyautistic Self-assessment is valid and reliable, true, but if you need formal accommodation, you need formal diagnosis.
@ScottSoCal @actuallyautistic
i wish we could get occupational therapy to help us learn ways to sidestep problems we have in public. really good strategies and devices for our differences. I guess this does not happen yet.
@ScottSoCal @actuallyautistic I think it depends on where you're at. An actual diagnosis might help with work and school accommodations, though my college was able to do accommodations with just the drs notes for my other conditions. From your handle it looks like you're not in a state that penalizes people for being dx'd autistic. If you're comfortable with self dx and don't have any need for formal paperwork, then no need to get a formal dx if it's not easily available to you.