As I write this, I’m on my fifth round of applying for a particular service for my autistic children. That means I’ve already gone through the application process, the assessment, and the denial four times.
The specific type of service is irrelevant for the purpose of this article. Parents of autistic children all over the country are facing the same issues trying to get the support and services they need in order to keep their children safe and have a better quality of life.
Note: I also know that autistic adults are facing similar issues, but I will stick to services for children because that’s where I have personal experience.
When I received the first denial letter, I wasn’t surprised at all. As I called to apply, I told the nurse, who was in charge of screenings, that my son was nonverbal and had an autism diagnosis.
We had waited so long to get an official diagnosis. I thought this new information would be helpful to her for screening purposes.
Her response? Wait for it…
“Well, that doesn’t mean he’ll qualify. Autism is just a behavioral diagnosis.”
Hold my drink.
Not only is what she said untrue, it illustrates a few much larger issues surrounding the misconceptions and misunderstanding of autism. As a health professional, I assumed she would know better. But I was wrong.
Autism Spectrum Disorder (ASD) is a group of complex neurodevelopment disorders. Yes, it’s diagnosed largely by observing behaviors. But that’s because it’s unrealistic to do an MRI of every brain. And since the spectrum itself is so diverse, every image would look different from the next.
Autism is not a behavioral diagnosis. I cannot parent, punish, or spank the autism out of my child, nor would I want to. But calling it that implies that autistic children choose to act a certain way. So let me clear a few things up.
Children don’t make a decision to stay awake for two days straight. They don’t think it’s a good idea to wander off alone and cross the street. They don’t think it’s fun to rock for hours at a time in order to calm their nervous systems.
Children don’t bite themselves, or bang their heads against the wall in order to seek attention. They don’t constantly scream because it’s more enjoyable than talking about their feelings and opinions. I could go on, but I won’t.
Trapped in Autismland
In my experience, the biggest roadblock to gaining support for my children is that the services themselves weren’t created for autistic individuals. Autism was added-on to existing supports, and the powers-that-be haven’t done enough to update them. (Yes, I realize how much effort it took to add autism, and I’m thankful for those advocates.)
There are services for physically disabled individuals, and there are services for people with cognitive impairments. Autistic children seem to be caught in a no-man’s-land between the two.
Example 1: While many autistic children may be able to physically walk from one point to another without a traditional assistive device (wheel chair, walker), they may need assistance in other ways. They might need to hold someone’s hand, or have constant supervision/direction to ensure their safety… much more so than their neurotypical peers.
Example 2: Instead of needing traditional accessibility equipment installed in their homes (wheelchair ramps, bathing equipment, specialized beds), autistic children may need door alarms, communication devices, or a backyard fence in order to keep them safe.
All of these needs can be justified, but there’s too much room for subjectivity. The guidelines are unclear. This means that screeners can use their own judgement to determine whether or not a child qualifies. And that’s not right.
With a current average of 1 in 59 children being diagnosed with autism in the United States, policies need to catch up. They need to provide better, more specific services to fit the needs of autistic individuals.
What can we do?
We can voice our concerns to our own elected officials, community services boards, and health departments. We can show up to community meetings. And more importantly, we can VOTE for politicians who support the autism/autistic community.
And in the meantime, we can continue to educate those “health officials” on the other end of the phone. Maybe not directly, but in a very detailed letter to their bosses.
Yeah, I did that.
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