Guest Post, Social Media, Special Needs

The Journey From a Hidden Secret Life to Autism Advocate

BY JACQUELINE WAXMAN

True confession: My son is 14. For most of his life he had no idea that he had an Autism diagnosis. Actually, pretty much no one had any idea about his Autism diagnosis.

We saw one doctor, only, at his pediatrician’s office and she knew my preference of not telling my son about his diagnosis.

Any specialist we went to – I would either not tell about his Autism. Or, I would pull the doctor aside and tell the doctor “he has autism but doesn’t know – please don’t mention it.”

My son completed early intervention into preschool disabled into school aged child with a learning disability. As a professional in this field I “knew” he had Autism long before a doctor diagnosed him.

Our first diagnosis came at around age 7. The school pushed for a formal diagnosis to expand services. They paid for a psychiatrist. Diagnosis: ADHD, Anxiety, Autism*.

The report was short, sweet and to the point. Until I read the last line. The *.

Autism*: high functioning with non-classical presentation.

That wasn’t even a real diagnosis. What did that even mean? What is non-classical presentation?!

Essentially, at the time and for the purpose, it meant that he didn’t show enough signs of Autism to diagnosis it but too many signs to rule it out.

I pushed the report out of my mind.

Besides, he had just started medication for the first time and it was amazing. The change was unbelievable.

The ADHD medication helped so much that I wanted to write a love letter to the manufacturer. Literally, I considered it.

This calm continued for a few years. Until about age 10. When our life fell apart.

I went back and forth in my brain. He was doing so well. Maybe he didn’t really have Autism after all. Or, at least not the type I had to talk about.

The beauty of disaster is that sometimes it forces you to actually be what you were meant to be.

Let me explain.

My marriage fell apart. My dad died. I was forced to sell my marital home and move to my mom’s house with 3-kids. We all slept and lived out of one room.

The more pieces of life that fell, the more things changed at a rapid fire pace, the more apparent Autism became.

Autism likes stability. My son couldn’t handle the rapid fire changes.

Autism likes repetition and schedules. None of which we had anymore.

The melt downs were new. They were loud and violent. And, in the early days often involving the police. I’m not sure I’ll ever forget the frantic 911 calls. Watching it take 5+ officers to calm down my, not so little, boy.

Autism was now not only apparent. It was loud. It was scary. And, it was screaming “Here I am and look at me.”

I could no longer hide Autism.

Ironically, it became something I spewed off frequently. Every time someone would tell me how to parent my child, or what they would do different or what I was doing wrong I would share that he has Autism and is having a hard time adjusting to so many changes at one time.

Something I spent so much time hiding suddenly became my defense.

Autism took over my life.

I’m a social worker by profession. I tell people how to navigate systems and fix challenges. I know every in and out there is to possibly know.

Yet, over and over and over I wasn’t finding appropriate nor helpful services for my son.

I was lost.

I was heart broken.

I was furious.

In order to make a change I was going to have to be the change.

My son is kind, compassionate, fiercely loyal and incredibly intelligent. He’s an amazing kid.

The MOST amazing parts of him are the parts that are influenced by his neurodiversity.

Autism was no longer something I could nor wanted to hide. It was something I had to embrace.

I was so afraid of labeling my son and therefore limiting him. When in all actuality I was limiting him by not being honest and forthcoming. His Autism is no more or less a part of him than my anxiety is a part of me. Or, someone else’s diabetes.

My son was well aware of his differences and limitations. It used to be something he thought was his fault. Something he had done wrong. Which wasn’t at all the case. By giving him the tools he needed to understand why certain things bother him or why he can’t do certain things I empowered him to embrace his differences.

In April, spread Autism acceptance. Because Autism acceptance is the cure.

Thank you to Jacqueline Waxman for sharing this piece with us. It first appeared on her blog page www.facebook.com/walkingthingrayline/

Jacqueline Waxman, M.Ed is a writer, trained social worker and special needs Mom. Her passions include writing, photography and advocacy. Jacqueline is currently collecting anonymous contrinutions for her project “The Secret World We Live In: The Untold Stories of Parenting Special Needs.” For more information, please visit Jacqueline’s Facebook page www.facebook.com/walkingthingrayline/ You can follow her page at Walking a THIN Gray Line.

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