“Maybe It’s Not Autism…”

“Maybe it’s not Autism….”

There is a process my husband and I seem to follow when each of our children with autism have been diagnosed.

1. We accept, or come to terms with the diagnosis
2. We learn about autism, and in the terms of what each child is experiencing
3. We tell family
4. We tell friends
5. We spread awareness

So many times when we began to tell others that Declan was diagnosed with autism, that Catelyn was diagnosed with High Functioning Autism we would hear:

“(S)He doesn’t look like they have autism.”

“My kids do those things – they are no big deal”

“I don’t see it….”

“Maybe it is something else..”

And NO LIE – Professionals too.

I had one speech therapist tell me, “He doesn’t have autism – he can make eye contact with me!”

And the Pediatrician, honest to gosh, a couple of weeks ago referenced Rain Man when he was examining my son.  He referenced the toothpick scene and asked if my 5-year-old son was a savant with numbers.  I did put my head in my hands.  But lifted it to tell him that my son would say he saw 2 toothpicks, because that seems to be his favorite number right now.  Whenever someone asks “How old are you?”  He yells “2!” Holding up 3 fingers.  (He’s 5).

When the Pediatrician asked if Declan participated in a lot of repetitive play, I realized he was trying to fit him in an autism box, and told him “Yes, but not the way you are thinking.  He doesn’t sit and push a flashing light button for hours.  But he will watch the same 10 second blurb on a YouTube video ALL DAY LONG.”

I tried to explain to the pediatrician that awareness of autism has changed through the years, now more than ever.  That if Declan were to be diagnosed by the standards of even 10-15 years ago, he would probably carry some form of a Mental Retardation diagnosis as he has many cognitive/developmental delays.  For my daughter with High Functioning Autism, she would be considered a behavior problem.  The Dr. agreed.

In some ways, I get it.  I understand the confusion.  When Declan was diagnosed with autism, I went through the stages of grief.  When I heard the word “Autistic” I thought about the person who could not speak, could not care for themselves. When Catelyn was diagnosed with autism, I was confused.  I began to see her through a different set of lenses, and her behavior began to make sense.  I felt relief.  I knew we could help her, provide her with understanding.

But in the span between their diagnoses, I had learned so much about autism and the spectrum.

I am currently reading the book “Look Me In the Eye: My Life With Asperger’s” by John Elder Robison.  It has had a tremendous effect on helping me understand even more about what my daughter with High Functioning Autism is experiencing.

I came across a passage last night, and it seemed to sum up all that I have been trying to explain to family, friends, professionals about autism in general.  For the longest time autism was not a spectrum disorder.  Asperger’s Syndrome was researched for some time, but did not become an official diagnosis in the Diagnostic and Statistical Manual for Mental Disorders (DSM) until 1994.  The autism spectrum wasn’t created until 2013.  These dates are fairly recent.

So when I came across this passage, I finally found the thought clearly written by Robison:

“In the first sixteen years of my life, my parents took me to at least a dozen so called professionals.  Not one of them ever came close to figuring out what was wrong with me.  In their defense, I will concede that Asperger’s did not yet exist as a diagnosis, but autism did, and no one ever mentioned I might have any kind of autistic spectrum disorder.  Autism was viewed by many as a much more extreme condition – one where kids never talked and could not take care of themselves.  Rather than take a close sympathetic look at me, it proved easier and less controversial for the professionals to say I was just lazy, or angry, or defiant.  But none of those words led to a solution to my problem.”

“Maybe it’s not autism….” is a statement we hear.  And I understand why.  The autism spectrum was created in 2013.  There is a notion of what autism is, but it is something that encapsulates so much more now.  I am continuing to learn about autism, all the differences within the similarities.  And I will continue to help spread awareness for my children.

“Look Me In the Eye: My Life With Asperger’s” Robison, John Elder, Three Rivers Press, 2007