Wednesday, January 6, 2016

And Then Suddenly I Was Autistic...

Trigger warning: Institutionalization, abuse, suicide, general yuckiness.

When I was little no one knew I was autistic. I was just a hyperlexic, sleep disordered, sickly, difficult child. In addition to meltdowns I had shut downs so I was eventually taken to a neurologist to rule out absence seizures. While they said my brainwaves were unusual, it was not epilepsy. It was written off as 'stress' but they didn't suspect autism. I was subjected to many invasive medical tests during my childhood to try and determine what was 'wrong' with me but aside from some food intolerance, nothing showed up.

I hated life as far back as I could remember. I always had such a strong sense of not wanting to be here, like I knew on some level that life wasn't supposed to be so hard or overwhelming. At the age of four I drank an entire bottle of perfume after my sister told me it was poison but it wasn't until I was nine that I made a conscious decision to try to kill myself.

I was put into therapy and tested. I recall them being frustrated with me for my 'non answers' but some of the questions simply made no sense to me so I refused to even try. How the hell should I know what the woman in the picture was thinking? I could have fun with that one now but back then it seemed pointless.They still didn't know I was autistic and as I continued to get worse I was eventually institutionalized. I officially became The Crazy One of the family.

I spent two birthdays in the 'Bad Place' but they didn't figure out I was autistic there, either. Looking back at it all, I believe that some of my fellow patients were also misdiagnosed autistics. Unfortunately their 'treatments' were pretty much the opposite of what autistic kids would need. Living in close quarters with 29 other kids would be hard for anyone but being locked out of my room so I couldn't escape from the constant chaos was their approach to 'making me deal' with it. Meltdowns would follow. I was written off as 'resistant to treatment' and told I would spend the rest of my life in places like that. After 16 months the insurance stopped paying because I was getting worse instead of better. I was kicked out and sent to a residential program in Pennsylvania.

They didn't know I was autistic, either, but they accommodated my needs anyway. They also didn't believe I was 'crazy' and for the first time I stopped being quite so miserable. Mostly. In defense of the professionals, I was also an abused child so many of my 'behaviors' could be excused as the effects of that. PTSD could take the blame for the disordered sleep, hypervigilance, and other things. I was there for a couple years and then returned home to Vermont.

I was still The Crazy One of the family. Shortly after coming home my mother killed herself, my father moved on and moved out, and I was left as a teen to flounder. I spent the next 20 years in and out of marriages, long term relationships, and many failed attempts at holding jobs. I just could not do life like 'normal' people no matter how hard I tried. I could 'pass' for a while and then I would go through a burnout period where I could barely function. I used what energy I had to try and hide the worst of it from my children. After several years of this cycle I was determined 'disabled' but the reasons given were depression and anxiety. Well, yes, I have severe anxiety but since that time have come to realize that the depressive episodes were triggered by my loss of ability to function and not the other way around. Losing the ability to do things sucks and there's an adjustment period that follows. Feeling depressed during that time is an understandable reaction but not the cause.

So how did I magically become Autistic? Like so many autistic adults it was when my youngest child was diagnosed. Again, I assumed so many of my little 'quirks' were from being abused. Lousy eye contact? Must be my low self esteem. Don't like to be touched? Must be that pesky old sexual abuse. Pointed, amused looks from my husband during Evie's evaluation? Yeah, okay, I get it. She and I do a LOT of the same stuff. Even the toe walking. And smelling everything.

It wasn't until I read the differences between the way autism presents in males and females that it was really driven home for me, though. It explained so much about everything I've struggled with over my lifetime. I've now had three years to process all of this and I'm still learning new things about myself and how my brain works all the time. This knowledge has been a blessing. I still struggle daily but now I understand why and know what I need for accommodations to make life more bearable.

I no longer don't want to be here. Here isn't so bad after all.


  1. What a great post this is. Thank you!

  2. I'm so glad that you no longer want to not be here. The world is a better place with you in it! Fist bump (I would hug but ya know ��)

    1. Cyber hugs are totally cool. I'm always down for those!

  3. I have you to thank for sharing so much about you and Evie, because it made me realize my own quirks have another explanation too. And my own kids too. Now I'm able to recognize that I don't have to give in to pressure and be miserable doing things "normal" people expect. So I owe you the biggest hugs possible for sharing so much of your self. <3


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