They Missed It; They Missed Me
"I am a survivor; an autism survivor.
I have been torn down, pulled to pieces, and have had my heart ripped from my chest slammed on the floor and stomped into the ground. But—I am still here to tell about it.
My parents did not notice, my teachers were blind to it, and my doctor‘s misdiagnosed it. When they noticed me on tip-toes, they made me a ballerina. When I twirled round and round, I was only dancing. When I had imaginary friends, they said that was just what little girls did.
When the light bothered me, I was allergic to sunlight. When smells overwhelmed me, I had a sensitive stomach. When I only ate a few select items, I was picky. When I could not stray from my rigid routine, I was hard-headed.
When I thought I was smarter than my teachers, I was obnoxious. When I couldn‘t stand certain fabrics touching my body, I was being a princess. When I cried and screamed, I was spoiled. When I rocked back and forth, I was concentrating. When I sat alone, I was in my own world.
When I couldn‘t keep up, I was not living up to my potential. When I didn‘t think the way others did, I was just too smart for my own good. When I didn‘t connect with my peers, I just didn‘t care about them. When I misinterpreted situations, I was inconsiderate. When I asserted myself, I was inappropriate.
When the children‘s screaming hurt my head, I was a bad mother. When I could not keep them on a schedule, or keep the house in tip-top shape, I was lazy. When I could not stick to a budget, I was irresponsible. When I couldn‘t understand, I was stupid.
When I stayed in my pajamas for days, I was depressed. When I was overwhelmed by the world, I was agoraphobic. When I was tired and frightened, I had an anxiety disorder. When I realized something was wrong with me, I was making excuses.
The one thing my entire life‘s experiences screamed, the one thing that was consistent, was that everything was my fault.
No-one recognized my autism; no-one saw that I had Asperger‘s Syndrome. How could they? Asperger‘s Syndrome, Aspies—I – did not exist; not yet."
Extract - Chapter 1, Twirling Naked in the Streets - and no one noticed - Jeannie Davide-Rivera
I have just read the whole book (only 131 pages) - and really identified with it as an aspie woman. It is available online as a free .pdf download.
For those of you diagnosed as adults, when was your epiphany? Did you spot it yourself (in this book, the writer believes that it was the very characteristics of her autism that helped her recognised that she was ASD)....? Did someone else spot it first?... Have you accepted it?
I can relate to a LOT of the above!
My epiphany? I don't think I had one as such. Over the years I occasionally recognised some of these things as being 'a bit like autism' but somehow always qualified it with "but not REALLY" because I suppose I had the stereotypical view of autism as an all-or-nothing scenario. I don't think I'd heard of Asperger's until about, maybe, eight years ago and I didn't really understand what it was - I just heard the word 'autism' when people were trying to explain Asperger's to me and arrogantly assumed I didn't need to hear the rest of what they were saying.
I think i only really started to consider that Asperger's might actually apply to me about a year ago. Vaguely at first then, as the months went by, tentatively considering it as a real possibility. That's probably when I actually started to read little bits about it then, right around that time, I watched the Chris Packham documentary and suddenly thought "Oh my god! This might actually be real!"
Weeks later I plucked up the courage to ask my GP for a referral to be assessed and just a few weeks after that I had the appointment. (I've since heard on here that most people aren't seen so quickly so I know how lucky I was that it all happened so fast.)
Anyway, during the assessment a few things came up that made me look back on many things in my life in a whole new light and I think that's probably when my epiphany occurred. I just remember being blown away sitting in that room at the end of the assessment having just been told I have HFA and thinking "This is amazing" and "This is awful" simultaneously. On the one hand EVERYTHING suddenly made sense but on the other hand I was thinking "But I'M not disabled!" :/ Obviously I had a LOT to learn about Asperger's!!
It has been hard work trying to source information but the more I learn about it the more I'm becoming comfortable with it. It basically feels like I'm learning that it's okay to be me, maybe even HOW to be me a bit more successfully. This forum has helped a LOT with that process, meeting everyone else on here has been a revelation!
On a side note, I just broke the news to my eldest daughter this week. I wasn't sure I was going to, at least not for many many months until I had lived with it a while myself first, and I was really quite worried about her reaction in case she was upset or scared or ... I don't know really, I just know that it was a really big moment. Anyway, I got to the end of my long-winded explanation (yeah, like this one here!) and she said, "Yeah." Turns out she'd pretty much sussed it out years ago and didn't really understand why I thought it was a big deal saying, "But how could you not know?". How indeed!?
Thank you Endymion... I’ve been reading a lot...finding and reading such voices and articles helps a great deal to interpret things. Then ... those memories from the last... neural connectors firing.... and then filtering such soup to find a voice. My son is also rather relaxed about things.. almost disappointed that I’ve been so dim and not stopped things sooner..
Wow......I could have written most of that. I am not diagnosed but the more and more I read and research and learn...the more I relate and recognise and connect. I have found the answer to who I am and why. Why I feel dropped from a UFO, why I find it so hard to function day to day much of the time, why I feel so confused amongst people.
I have been assumed to be autistic by a few people and I have been suggested to that I am by many more...that's why I initially started looking into it. Then we have noticed my eldest son has started to show traits quite strongly and noticing for himself that he's a bit different. So am looking into it even more.
If you google the book you can find and download a pdf version of it to read (its fairly short)... also check out the following:
hope it helps