Was diagnosis a life changer?

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People talk about “Autistic Pride”. Personally I can not be proud or ashamed of something I was born with. I think we should be proud of surviving and accomplishing whatever we could no matter how atypical that may be dispite ourselves and nobody else knowing who we really are. The self esteem/confidence boost from realizing this should be helpful dealing with the challenges ahead.

Finding out how much of our lives has been influenced by our autism sure is humbling. The knowlege gained from the diagnosis of my weaknesses and strengths was crucial to my surviving mentally some serious post diagnosis physical challenges.

As far as the anger from not bieng recognized I look at it like this. The lack of knowlege caused the adults in my life to make mistakes. There was no way they could have recognized my autism back then, they did the best they could and somehow some correct decisions were made. I am convinced it was the “lesser of two evils” that we did not know. An autism or any misdiagnisis that would have resulted in my institutionilzation, my being tossed away, or locked away in the attic. Those were the options available if you were a “mental cripple” or a “mental defective” back in the 1960s.

Last edited by ASPartOfMe on 27 Dec 2018, 10:32 am, edited 1 time in total.

No; I realised I had it two years earlier, and wasn't really bothered anyway.

Thank you for this very well written reply. I agree completely!

It amazes me when I hear of children being diagnosed as toddlers. Is that all based on observation? How does a toddler tell the assessor their inner thoughts and feelings? How are they judged for social impairment when they've barely left home? (just a random question I've always had).

As toddlers, what is assessed is “joint-attention” and play skills. Do they play with a truck like it’s a truck? Do they respond when parents point out objects to them. Do they ask for things through, at least, gesture?

Autistic children frequently use a truck as purely something to throw or whatever. Or they take it apart and put it back together.

“Social skills” of a more complex nature are not assessed until preschool age.

Just realised this was in the women's section. Sorry.

If one has good pertinent information, like I hope I had, it would be welcomed in the Woman's Forum, I'm sure.

My son was extremely obviously autistic severely disabled and global developmental delay which is a disability that is rarely talked about though far more intense and debilitating than autism-and

I STILL did not believe the doctors when he was diagnosed with being in the mosr severe 1% cases of autism, at age 4. I had exactly ur questions. They said if u dont agree or it doesnt continue to apply within a year or more, come bavk and get reassessed but there is absolutely NO doubt in our mnds ..

As the days months years progressed as well as me looking back I realized how extensively the DETAILED assessment applied. Even in a group of disabled and severe ASD kids (notjust his class but the camp and activities i took him to)
he stands out as being the most in need of support from them.
Im the one having to take him out every few minutes fr a break or to recalibrate or look at smthing else calm him down he scratches at me if its too many ppl etc needs to be eased in and extreme needs whatever they had written in the assessment n what they had verbally suggested wd happen (extreme needs n extreme lack of communication n extreme need fr adults to trabslate n figure out, extremely limited life)

and much more cannot explain it as well as an outsider might as it is a part of our life

Severe self injury (before therapy which taught him to redirectvhis frustrations n also to communicate somewhat by clapping this alone took about a year to teach( much more thats why i despise the ‘broad brushstrokes’ made by the twitter ASd community (i truly hate them beyond anything as they are so extremely rejecting of cases like my sons even being possible) who insist therapy is harmful bcuz he is far happier being able to redirect and somewhay be understood than he was being frustrated sad. Unfocused n therefore closed off from everythinb

Thank you, Blooie. You explained it well. I'm sure with extremely low-functioning autism it is apparent at a young age as you describe. I've wondered about the people who say they were diagnosed with Aspergers before even starting school. I think of all the questions I had in my assessment as an adult but I forget there must be different criteria for little children. The developmental questions I answered about my own childhood involved a lot of introspection and / or review of reports from my teachers etc., so I wondered where this data comes from for higher functioning children who are only a year or two old. I'm sure the professionals know what they're looking for, and I don't doubt their judgement. I was just curious.

Hugs to you and all the work you do for your children.

Oh! Sorry I misunderstood. They make the children play games and give them toys in certain ways that wd allow the kids to display their cognitive processing n social skills at that developmwntal level

I was too young to be personally affected by the diagnosis.


My dad mentioned it occasionally. Especially when giving me a base reference to why my mom was so "UN" anything an why her father's side of the family were "eccentrics" or "queer as ducks".


It allowed me to travel to and have memories of our time in Europe when nailing my diagnosis.
Change for better in way? since I was in private tutoring and also allows the therapy creating skills for me to catch myself when I am being too far left of center?


It definitely gave my non verbal son the services and accommodation he needed!n WAs very good to for him to have his DX

I just got my diagnosis and it's really a life-changer. Honestly, I think I would have killed myself otherwise. I experienced some kind of burn-out at work and it is clearly because I don't fit into normal work life at all. I thought that I am crazy, stupid, pathetic, and not trying enough. So it's definitely a relief to have a name for my difficulties. I don't know if I can find some job type that suits me, but I'll try!

Getting a diagnosis didn't change much. It only meant that I had a therapist that would back it up, since no one was ever willing to do so before.

Figuring out that I had Aspergers was pretty life altering though. My mother had always suspected it in me but never said anything to me about it until the end of high school or so. After some reading I very much thought it was me but I wasn't ready to deal with it so I dropped it. When i came back to looking at it again I was ready and I was able to accept that all I had been through and dealt with had been to do with my having Aspergers. So many things made more sense and more importantly, I stopped blaming myself. I realize how so many things I had blamed myself for, felt guilty about were not my fault, and in fact almost wholly had to do with other people's ignorance.

Getting my Bipolar 1 diagnosis was more of a life changer than my Autism one. Both of my sons are on the spectrum and my husband has many ASD traits, as well. My children are both like miniature versions of myself so it was pretty self-explanatory when they were both diagnosed as to what was going on with me. Being diagnosed with bipolar, though, helped explain a lot of the impulsive and rash decision that I make. I tend to blame myself and self-injure because I hate that I can't control my actions more. My husband has also become much more understanding since my diagnoses.

I never expected to be diagnosed with Asperger's. I didn't think there was an explanation for how I acted and felt. I'm lucky to have an amazing support system behind me, and I'm truthfully a much better person. All my social frustration was directed towards the people around me, and it wasn't healthy. A year after my diagnosis, I'm more confident, independent, and happy. It changed my life positively; I couldn't imagine where I'd be if I didn't know.

I was only in fourth grade when I was diagnosed, but neither I nor my parents really understood what it meant until I was 14 and started doing some research. It wasn't diagnosis that was a life-changer for me, it was the understanding of autism.