From Parent to Ally: Listening to the Experts on Autism (by Daya Chaney Webb)

“The greatest tragedy that can befall a child with Autism is to be surrounded by adults   
who think it’s a tragedy”. ~ Ellen Notbohm

Raising an Autistic child can change the very heart of who we are as parents, and as people. It’s a life that provides deep rewards, a broader perspective of the world, and an unspoken fellowship with other parents who can understand and connect with one another from across the aisles of Walmart – and hopefully across the aisles of political parties, as well.

This life can also be overwhelming. It can be easy to get tunnel vision when you’re far into IEP preparation, therapies, and appointments; alongside the day-to-day challenges of life for our kids with Autism. This parenting gig (a different job than most!) requires a lot of focus: focus on today, tomorrow, this year, maybe even five years from now. Navigating the uncertain terrain is intense, scary, and isolating. It’s exhausting.  

Parents of Autistic children often travel a modified timeline for developmental milestones. We try not to compare our children with the kids of friends and neighbors, but I know from experience it can be hard not to filter the comparative ease of “neurotypical” experiences through an alternative lens of emotion and insecurity, self doubt and exclusion.

We’re told we need to learn to be flexible in our expectations. We talk about our need to adjust our dreams for our kids according to their diagnosis.

Knowing this, why would anyone be surprised to learn that some Autistic adults have feelings of resentment toward parents? That there’s anger, sadness, disappointment, suspicion, and distrust? If you think about it, it makes sense – for decades we work on care plans meant to “fix our kids” and help (force) them to fit into a world that my own autistic son, Sam, tells me feels “sharp and jagged” to him sometimes.

It would be easy for our kids to get the feeling that we think they are broken.

It should be easy to see that our alternative lenses don’t always show us an accurate picture of “best practices” for our children’s therapies, education, and more. That after years of traumatic events for our families, our perception as parents and protectors might be somewhat skewed.

For example, I was truly surprised to learn some adults in the Autism community want to be referred to as Autistic. I still struggle with this – as a mom, my gut feeling is that I want more for my child than this “label,” which feels like a limitation to me. I wonder why I can’t say artistic or athletic instead? Because my son is both of those things, too.

But maybe it’s the viewpoint of neurotypical parents (like me) - who’ve seen Autistic as something lesser in comparison to traits like artistic or athletic - that’s contributed to an impasse between the worlds of parenting someone with Autism and being someone with Autism. We lack the insight needed to accurately understand the full Autistic experience.

I first learned about the negative feelings some Autistic adult advocates have towards parent advocates when I joined Little Lobbyists, who’ve been advocating alongside self-advocates since they began. Little Lobbyists know our kids with disabilities will grow up to be adults with disabilities. We want to empower them to be the next generation of self-advocates, and to do that we know they need role models who are themselves disabled.

When you get a tip for who to bet on in a horse race, it’s most valuable (and accurate) when it comes directly from the “horse’s mouth”- the jockey or the trainer. Moving forward, I’ve decided to take advice straight from the most reliable source.

Only an Autistic person can be an Autism expert. I can trust that.  

“You have the power. If you do indeed, as you claim, want to be allies, then I suggest you start acting like it.” – Julia Bascom, Executive Director of the Autistic Self Advocacy Network

The author, Daya, with her son Sam.