This story is our family’s experience with our Autistic child. I heard the phrase” If you’ve met one person with Autism, you’ve met one person with Autism” and it is so true. It is a unique path which is not boring, but at times can be lonely as well.
My son Jackson was diagnosed with Autism after he was two. He wasn’t able to walk or even crawl at that age and communicated with a few signs. We were so focused on helping him with all his physical limitations I didn’t pick up other clues. A friend who had worked in social work was the first to tell me she suspected he might be on the spectrum. The diagnosis actually came as a relief. A diagnosis meant services, support, waivers, and insurance assistance. He began to visit an autism center, and got a coveted spot on the list for free preschool the following year.
I met through groups other moms of kids with disabilities and was paired with the other “autism moms”. But I quickly observed that beyond having children with the same diagnosis, we often had little in common in our experiences. The parents of children with down syndrome shared many similar stories of heart surgeries and where to find funny "Rockin' an extra chromosome" t-shirts for their upcoming walk, meanwhile the autism parents I was with couldn't seem to agree on best therapies (some for and some against ABA therapy) or even causes (from vaccines, not from vaccines). Each autism parent had a completely different experience; some had children who could read, write, play piano, or who just needed some social cues and then some parents, like me, had non-verbal children requiring full support with all aspects of daily living.
As the years went by more diagnosis came: seizures, hypotonia, intellectual disability, but autism was always his most defining attribute. He made improvements and began to walk with SMFO support at age 4 and said his first word at age 6: “wiggle, wiggle, wiggle”. It was intertesting to watch strangers interact with him in public, often we could see their awareness of his disability on their faces. Sometimes a child would ask questions like "why is he flicking his hands around like that?". An adult might ask what Jackson was "Good at?" implying all autistic people have hidden talents or abilities like Rain Man. (See article Rain Man made autistic people visible. But it also entrenched a myth.)
I read all the books, attended conferences and pushed for an inclusive classroom and world for him. But as he got older the gaps became more and more apparent. While he could spell his name, he struggled to hold a pencil. I then pushed for typing which was also a challenge. The inclusive future I had hoped for in the typical age-appropriate classroom had to change and my expectations had to change too.
Today at age 16 my son is in so many ways just a larger version of his three-year-old self. He still loves Barney videos, riding the school bus, and having a soft blanket for comfort. Puberty has hit us hard with some new aggressive behaviors and he seems to feel as out of place in his changing body as a typical teenager. Looking ahead into adulthood makes me very nervous without the support structure we know that works with children, but we will move forward and learn our options just like we've done at every other stage.
April is celebrated as Autism Awareness Month with a push in recent years to change to Autism Acceptance. The shift has come in moving away from the “people first” language taught years ago or using terms like “special needs” to my simply identifying him as my autistic son or my disabled son. For our family, acceptance is something that came long ago.
What has your journey with Autism acceptance been? Please share in the comments below.
Spoonie Threads takes special care to make their products sensory-friendly with no rough seams or edges and our clothing has either printed labels or tear away ones.