5 observations on my late diagnosis2 min read

I almost put my fist through a car window while deliv­ering pizza and broke down crying because I did some­thing autistic in front of a cus­tomer post-diagnosis. My denial of my diag­nosis was very strong prior to that moment. Realizing that I can finally admit that without cringing in shame is proof that I have gained some per­spec­tive since then.

My 5 obser­va­tions are:

A) My accep­tance is a process and path unique to me

Believe me when I say accep­tance was not from A to B. My accep­tance was from A to 7 to a ? to doing donuts around the Batman symbol a couple of times and finally reaching B in reverse. Some days still feel like that day with the car window. Others are nothing like that. Just depends on the day.

B) My diag­nosis fixed nothing about my family dynamic.

The ideal out­come I wanted with my family and my diag­nosis had its throat cut by the harsh reality. I’m still mis­un­der­stood. I’m still reluc­tant to talk to my family about my autism. Nothing changed. The only family that gives me any sup­port are the ones who always have.

C) Knowing is half the battle

I did “get it” from that because it fits. A lot of trouble I have right now is simply because I didn’t put in the work to keep myself informed. Keeping myself knowl­edge­able about what’s going on and con­stantly asking ques­tions has great power to me.

D) I was not expecting to be a self-advocate

I just wanted to get my life put back together and move on when I first found out. I never wanted to advo­cate any­thing. But sit­ting on a panel one day made me realize that I go through a lot and that my per­spec­tive could help myself and others.

E) I am not alone

Early in my post-diagnosis journey, I assumed incor­rectly that there was no one out there who could under­stand me. The fol­lowing years have proven me very wrong. There is an under­standing about autis­tics among autis­tics that I didn’t know was pos­sible. For that I am truly grateful.

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  1. I was diag­nosed w/ Asperger’s last year at the age of 61. To say the least I can relate.

  2. 43 and diag­nosed 2 years ago, feel what you’re saying also. I’m still at the stage of having cut off most of the family/friends who spent so many years treating me so poorly for my con­di­tion… diag­nosis has made no dif­fer­ence to treat­ment at the hands of those that claim to “know what I’m really like”, this xmas being back across the country and holding a lot less pris­oners with how family treat me is inter­esting to say the last.

  3. I also really relate. I was diag­nosed 6 months ago at the age of 43. I read a bunch of books and blogs and found the over­riding mes­sage of peo­ples expe­ri­ence of diag­nosis being so pos­i­tive, that they imme­di­ately felt relief. Not for me.
    I really relate to what you wrote about relating with family. I have told my Mum about my diag­nosis though wish I hadn’t as she threw it back at me with,“well now you have a label to make excuses” when I was con­fiding in her some dif­fi­cul­ties I was having. I will not tell my brother, he has spent our whole life together crit­i­cising me and the way I think and act so pro­viding him with this infor­ma­tion will only harm me as he has never dis­played in any way a want to under­stand me.
    Whoa, bit of an out­pouring there. Not shared that before.
    Thanks for the article, always affirming to read others having sim­ilar expe­ri­ences.

  4. Sorry folks, even “neu­rotyp­ical” people have mis­un­der­standing par­ents, teachers and sib­lings. Neurotypical people can also be bul­lied at school by both other kids and teachers. And people with Asperger’s can have par­ents with Asperger’s who are not under­standing and will put them down.

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