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Nafun
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Joined: 27 Mar 2019
Age: 42
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27 Mar 2019, 10:07 am

I'm a 37 y/o male living in rural Ohio. I struggled socially in school, when I was approximately twelve, I became depressed, and at 15, my mother took me to a psychiatrist because I was reporting hearing things that weren't real.

I was diagnosed with schizophrenia, later changed to schizo-affective disorder and was shuffled between various medications for the next twenty years, none of them able to help.

At 36 years old, I discovered that the things I was hearing, smelling, seeing, feeling, and tasting were not hallucinations. My brain was isolating tiny background smells, sounds, tastes, touches, and sights and amplifying them. I started looking into what could cause this, and it pretty quickly led to autism. I asked my psychiatrist about it, and he said it was possible, but unlikely, because no one ever noticed it when I was a child.

I went home and called my mom and asked her about it. Her answer devastated me.

"Oh, when you were a kid the school nurse told me I ought to have you tested for autism".

I have spent my life a suicidal wreck. Terrified that any friend I make will find out that I'm schizo and abandon me (it happened, a lot). Going from ineffective medication to ineffective medication, each with worse side effects than the last with psychiatrists telling me that I would only get worse, that if I didn't stay on medication I would get worse and suffer irreparable brain damage. This was even more terrifying when you realize that, until the ACA, I couldn't get health insurance.

It took me two years to get tested for autism. Last December, I finally got a neuro-psych test and my official diagnosis. Unspecified Autism Spectrum Disorder. The doctor who diagnosed me informed me that, since I was an adult, and ASD was a developmental disorder, that "unspecified" was as specific as they could get. I felt like I finally made sense, that the way I thought and felt finally had an explanation. But I'm still lost.

This website is perfectly named. It is exactly how I feel. I've spent my life referring to other people as "humans". I've felt like a stranger in a strange land, like I don't speak the same language as any of the people around me.

Before my diagnosis, I felt like I was floating in a row boat in the middle of a body of water with no land in any direction, as far as the eye can see. Now, with a diagnosis, I feel like I've been handed a note telling me that I'm in the Pacific ocean. I know where I am now, but I'm still powerless to do anything about it.

My psychiatrist said I should compare it to an MS diagnosis. He said, someone with MS might suffer idiopathic problems, they might go blind for a week, or suddenly be unable to move their legs, and no one would be able to find a cause. But when they get the diagnosis, even though it carries a bad prognosis, at least they know that their problems were real, they have validation that their problems were real.

This initially made me feel better, but a very major difference hit me on the way home. If I had been diagnosed with MS, I'd have been referred to a specialist. There would be a treatment plan. They wouldn't have just told me "You have MS", and sent me home.

I've realized that living with autism is like living with blindness or paralysis. I have to find a way to live in a world designed for people with abilities that I don't have. I know it's not my fault now. I know that it's not a moral failing or a lack of willpower that keeps me from being able to live like everyone else, but that knowledge, and $1 will get me a cup of coffee. I can't find any resources in my area for adults with autism, neither can my psychiatrist or therapist.

The ultimate insult to injury, to my mind, is that when I finally got my diagnosis, and saw a list of symptoms of autism, it felt like an exact description of my life. I don't understand how none of the professionals I've seen since I was 12 ever noticed that I fit the exact profile. Part of me wishes I had never found out, because then I wouldn't be where I am now, wondering how my life would have turned out if I'd gotten the appropriate therapy when I was still young enough to find a way to live in a world where I don't belong.



BTDT
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27 Mar 2019, 10:20 am

You may still have plenty of time to turn things around.

I was just told by a guy who is 76 that I'm "still young." When he was in his 20s he honestly though that people over 30 were old!



Tim_Tex
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27 Mar 2019, 2:01 pm

Welcome to WP!


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AnonymousAnonymous
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27 Mar 2019, 2:19 pm

Welcome to Wrong Planet! :)


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Noble Glomad
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27 Mar 2019, 4:19 pm

Welcome Nafun, I can relate to a lot of what you write. I too have spent a large part of my life feeling terrified, or feeling like a wreck. I've always felt like I come from another planet, and here is already starting to feel more like home :D

In my local support group, some were happy they had the assessment, others wished they'd not been assessed. No easy answers, I guess :P



bobaspie2015
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28 Mar 2019, 4:46 am

Hello Nafun,
I was intrigued by your most wonderful post.
In a nutshell; I was diagnosed of HFA (High Functioning Autism) at the young age of 55 and since then I have researched HFA in depth as I believe once we know why we live life the way we do then life becomes much clearer.
I have found that being on the Autism spectrum is a very complex 'disorder.'
Now I have little trouble living with ASD, however because of underlying issues I have found that life for me can, on some days be difficult.
I have learned that some people who live with ASD also live with what is known as Sensory Processing Disorder.
OMG! I can related to this so very well as part of the package is; I have very little control of my movements; again only some day's.
I will bump into things, fall over and get tangled up just going to check the mail. LOL.
I would so dearly love for you to find your 'spot' on the spectrum as we all experience life in different ways.
Also if anyone of you guys who read this post, have any information regarding Sensory Processing Disorder please don't hold back, help us out.

https://familydoctor.org/condition/sens ... order-spd/