SELF AUTISM DX:

A Thread -

I was initially self diagnosed.

I watched my parents go through HELL with my brother. Dan was born in 1980. At the age of 3, someone told my mother that he “wouldn’t amount to anything.” She assumed that he’d be better off in a home.

Well...She was WRONG.

{I don’t normally give anyone a glimpse into my life like this; however, I feel that after certain people have ridiculed the ENTIRE AUTISTIC community, I should be able to tell our story.}

My father always fought for my brother and I.

He was the parent who never judged us.

It took EIGHT YEARS for my brother to get a proper diagnosis. Yes, EIGHT.

His first #Autism diagnosis came in 1986.
Not only was it a fight to get him diagnosed, but his medical records from birth to 18 months had “magically disappeared”

So my mother had NOTHING behind her in terms of evidence recorded in regards to his significant developmental delays.

At the age of three, he was selectively mute and couldn’t walk. He did, conversely, take an ENTIRE stereo system apart and put it back together again.

It hadn’t worked prior to this. And afterwards, it worked for about fifteen minutes. Pretty impressive for a three year old.

After the many years of MISDIAGNOSIS, I saw how discouraged my parents were. Family didn’t want to help out.

They had NO outside support.
Nothing.

I was basically my brother’s caretaker from the time I was six. Yes. I said six.

My mom had to jet over to the grocery store across the street from our apartment building to get cigarettes. So that gave me 20 minutes with just my brother & I.

And, I used this time wisely.

I taught him everything I knew.

I went through the alphabet, numbers, addition, subtraction, reading and spelling.

I was reading adult books by this age.

{I’d already read War & Peace by the age of seven. I DON’T recommend it. It could have been MUCH shorter.}

My brother did know how to use words to form patterns of speech but they were disorganized.

He used a lot of echolalia.

He began to learn things rather quickly by the time he was ten.
I knew he was brilliant. Yet our mother still saw him as less. And I never knew why.

So YES. I was skeptical. I didn’t want to be misdiagnosed. Again.

Because I was. Several times.

I was given psychotropics so strong that I required hospitalization to wean off from them.

The connection I had with my brother was and still is indescribable.

He is an amazing person. I’ve always felt that bond with him. I always say things that he and I did which were very similar.

I even asked my own father just a week ago “Geez, when I was 5 or 6, no one thought ‘hey Jenny might be #autistic too?’ “ He smiled.

Then he said “We just didn’t know back then. I’m sorry.”

He was absolutely right. Because even in the early 90’s, my brother’s diagnosis was changing. They labeled him describing his level of “function.” I never realized how harmful that really was until a few months ago.

So YES, I DID get an official diagnosis.

I first got a confirmation in 2009.
I was diagnosed by 2012.

Do I feel “self dx” is valid? Yes
I used this to SEEK and confirm this diagnosis. I had been through medical school years prior & was going to school for Nursing back in 2006.

I understand that without a diagnosis, you don’t get supports that you would if it were confirmed.

People MY age saw people called one thing, then another, then another, and yet ANOTHER. My Dad was right.

They didn’t know back then. #Autism was fairly “new.”

Meaning “it was becoming more recognized and diagnosed.” Clinically.

But NOT having an official DX doesn’t make a person INVALID! It just means the system has probably failed them.

This is NOT true for everyone, however. Some people THINK they are #ActuallyAutistic...

But they really are NOT.

That can be just as disheartening as labeling someone as “Bipolar” and having them come to find almost 20 years later that they ARE really autistic.

This is EQUALLY harmful on either end.

The ONLY reason I am sharing this is because I want people to know:

Self dx or actual dx doesn’t matter to me personally. I accept you ALL.
My family had been through enough. So I truly get it.

You are valid

JUST MY VIEWS; NOT OPEN FOR ARGUMENT. WILL NOT DEBATE EITHER.