Parents of Autistic Children Need to Listen to Autistic Adults

I experienced something over the weekend that I would like to bring awareness to. It has taken me a couple days to process and find the right words to even say.

Since my son Caleb has been diagnosed with autism, I have been trying to educate myself by reading books and being a part of online communities that have both autistic adults and parents of autistics in them. I recently stumbled upon a fb group for people in NH that was originally started by a group of women (parents of autistic children) as a way for them to feel supported. It has now expanded and grown to be a large community filled with all types of people effected by autism from many different walks of life.

I have enjoyed this group for its diversity, and hearing other parents perspectives as well as autistic adults perspectives has been helpful to me. However—Sadly this past weekend several controversial posts and conversations transpired within this group that at times had me shook with anger.

It has been brought to my attention through these conversations the very disturbing reality that far too many times actual autistic people do not have a voice even within their own community. I witnessed this first hand. I typically do not engage in heated online conversations in a thread with all people that I do not know (in fact I don’t think I ever have), but I just couldn’t stay silent on this one. I also don’t love the idea of writing about someone like this. But I think the subject matter is important enough, and this unfortunately is the perfect example of something that I think needs to be brought into the light. So often these things happen “behind closed doors” within these communities, without anyone from the “outside” knowing. This is important to talk about.

This is not okay.

I witnessed an autistic adult woman being bullied by an autism mom. The autistic woman was simply trying to give her perspective and challenge some of the common misinformed narratives that we can fall into as autism parents. Because of that she was harassed, belittled, told that it’s only the parents of autistics that need support, and was referred to as a child when she clearly is an adult. Also—Despite it being stated by several admins that ALL were welcome, she continued to attack the autistic community by making it clear that in her opinion only parents of autistic children/adults were welcome and worthy of respect within this group. “People with ASD can go make their own group” she said.

Then, as if all of that wasn’t awful enough, in a response to me she invalidated this woman’s diagnosis claiming that she probably isn’t even autistic. “I don’t care if she has autism (which she probably does not)” she said. Comments by other people were made like—“I’m sorry to see that you’re happy to be stuck with things that can stand in the way of taking obstacles out of your life” while implying that autism is something to be cured and that our job as parents is to make sure everyone knows how awful our lives are because of our autistic children.

When I spoke up against all of these things… I too was silenced, belittled, yelled at, and was referred to as “self righteous”. I really wish that I was making all of this up.

Thankfully after tagging admins in posts and assertively speaking out against these horrific things, I was able to get these comments all deleted. Here’s the reality though: I’m happy they have all been deleted, but the consequences of their words do not go away just because they disappear on social media.

These were unfortunately not the only things that transpired—these are just the ones I’m choosing to write about and share. I did however reach out to the woman who was being bullied and I am so thankful that I did. She is a beautiful person. I guess the silver lining is that I made a new friend. We can advocate alongside each other in this cruel world as we live through different perspectives within this community.

What an eye opening past couple days though. Seriously. The sad reality is that for some people, having an autistic child is just an excuse to be selfish rather than an opportunity to love all people and see the world through a different lens. There are literally people out there who are actively silencing the voices of people that are in the same community that their children are a part of. They claim to be fighting for their children, but they are really just fighting for themselves. They are so passionate about wanting respect and support, but yet they are not willing to extend that same respect and support towards others.

You don’t have to agree with someone to show respect. You just have to listen.

Autistic people. We need them. I need them. Their perspectives matter. What they think about the puzzle piece matters. What they think about person first verses identity first language matters. What they think about Autism Speaks matters. What they think about ABA therapy matters. It all matters because THEY are the actual autism community and WE ARE NOT. We are the allies. This is not to diminish our role as parents, OR the role of therapists and other autism professionals—but only to open the door a little wider for the ones who should have a place in the space that was created for them.

I’m horrified at the behavior of a few, because I know that they stand for many. I’m horrified because when I saw that woman being bullied, I saw my son. Caleb is a child now, but someday he will be an adult. He doesn’t stop being autistic once he becomes an adult. Therefore—the same love, respect, encouragement, and support that I receive as an “autism mom” should be there for him in adulthood. I pray that it is.

As a parent of an autistic child myself, I can confidently say that we need to be better at all of this. And I am including myself in that statement! We as parents don’t need to worry about our voices not being heard just because we are giving space for someone else’s. Amplifying one, does not diminish another. We can all work together. We already know the parent perspectives. We are the the loudest voice in the autism community! But we need to stop talking long enough to listen. This is a problem within society RIGHT NOW—allies wanting to be in the drivers seat when we should be amplifying the voices of those we claim to advocate for. I understand that some parents are taking care of a child who is non verbal or a 30 year old adult who cannot care for themselves. But that does not mean that the voices of those who can don’t matter.

Lastly I’ll say this…

Potential unpopular opinion:
I don’t like the term “autism awareness”. The very fact that term even exists further proves all the problems I have just mentioned. It’s a self focused movement for the caregivers of autistic people that projects an awareness to the “problems” of autism that is void of the voices that matter. Most people are already aware that autism exists. Autistic people don’t need more “awareness”. They need ACCEPTANCE.

And acceptance starts with listening.