Dear Parents of Autistic People,
I’ve been wanting to write this letter to you for quite a while. The first thing that I want to say is thank you! Every single one of us who identifies as either neurodivergent or as autistic hopes for strong support of family members as we grow up and become adults, and if you’re reading this, that means you’re trying.
Many of us we’re not very lucky in that regard, but some of us were. I myself had extremely supportive parents who helped me to learn skills that would benefit me even today. Without loving parents, kids have to find other role models and other support– and that can be a difficult– even futile– search.
So I mean it from the bottom of my heart when I say thank you, thank you for loving your autistic kids well and thank you for raising them with a sense of individuality and independence. Nothing that I’m going to say in this letter undermines the gratefulness that we have for our families.
Having said all of the above, I want to make you aware of a couple of problematic practices. Just today, I left the group that was advertised as a “safe space” for autistic adults to talk about their lives and ask questions for advice from other autistic adults. In the fine print of the rules it was noted that non-autistic people who had autistic family members and friends were also allowed in the group.
When a fellow autistic person brought up problems with this, I witnessed a woman who identified as a neurotypical who was the caregiver to an autistic 20-year-old condescend to those of us who were autistic who were not her children. She then went on to say how her autistic adult child was her hero, and that she lived in the ASD world full time because of raising her child.
Several months ago, I happened upon an image that an organization advertised to help autistic kids had posted in jest on their Facebook page. The image was labeled, “The international symbol for autism” and was a picture of a chicken nugget.
At first I didn’t get the correlation, and I shared the image because I was confused. What does a chicken nugget have to do with being autistic? Of course, I wasn’t in on the joke that parents of autistic people naturally got. The image of the chicken nugget is supposed to represent how picky autistic people are especially autistic kids with their food preferences.
When I expressed my problems with this image and the joke itself, I was condescended to by a friend who is raising an autistic child and told that I needed to get over it.
The organization Autism Speaks has given a platform to parents of autistic people and since that platform was created, I have seen more and more of these type examples popping up all over the place– especially on social media.
I do think that parents of autistic kids do have specific challenges and they do need a place to be able to share their thoughts, opinions, and yes, even their difficulties; but I also feel it important to share my own opinion.
Parents of autistic people, the autism conversation should not and cannot be centered around you. Mothers and fathers of autistic kids should not be the voices that the world is listening to when making decisions about how to move forward with autistic research and what types of programs and services autistic people need.
I find it more and more disheartening that even articles better written by autistic people get overlooked or the comment sections are full of parents autistic kids disrespecting the author. The scope of the conversation becomes less about the challenges that autistic people are facing and more about how hard it is to raise autistic children.
Even organizations like The Mighty have fallen prey to this epidemic. For every one article written by an autistic person, I see four or five written by autistic parents. As per usual, these articles aren’t really about looking to autistic people for their point of view or their opinions, but are articles trying to garner sympathy for the “especially hard job” of raising autistic kids.
I’m not going to pretend that raising an autistic child is easy. Raising children period is no easy feat, and raising children with disabilities and neurological differences presents additional challenges.
But as hard as it is for the parent, it is much harder for the actual autistic themselves, especially when they are fighting for control of their own narrative against their parents who have wrestled the spotlight away and focused it on themselves.
I am extremely grateful for my mom and dad. Neither one of them made my challenges about themselves. I have no doubts that there were times raising me and my disabled brother were difficult, and I’m sure that they had private conversations with their friends and other family members and jokes were made at our expense.
But when it came to my care, my mom was one of my biggest team-mates and supporters. She made sure that I had occupational therapy, when special education classes failed at their mission to treat me with dignity, she had me mainstreamed, and she always made sure that my teachers knew of the specific challenges that I faced.
If you’ve read my article on bullying, you know that it wasn’t easy, but at least I knew that my parents were not using my personal narrative as a way of gaining sympathy for themselves.
I am very grateful to this magazine, The Aspergian, just as I have been grateful to online gathering places and private Facebook groups that truly are safe places for people like me to go and speak candidly. Now what we need are for parents, caregivers, friends, and specialists to make more room at the table for people like us and allow us the chance to share our own struggles, our own difficulties, and our own longings without being made to feel like we are somehow less-than.
Parents of autistic people, I know, and I trust, and I believe that your intentions are in the right place! All I am asking is that as much as you possibly can, please allow your narrative to take a back seat to that of your child’s. Dignity, respect, and empowerment should always be the goal.
- An Open Letter to Parents of Autistic Children. - November 22, 2019
- The Long Term Impact of Bullying - November 11, 2019
- Autistic Meltdowns: From the Inside - October 29, 2019
I am paranoid of Mom talking about me behind my back , anyone else?
I have been contacted by strangers to tell me what mine has said, haha
This is precisely why I started the #NotYourChickenNugget hashtag on IG a couple months ago — and referenced this exact meme (international symbol for autism)!! Thanks for sharing.
Nice one Mike. They make us extremely anxious all the time and many tend to talk over the top of us.
Well said, Mike. I am a ND parent (dyspraxia, adult ADHD) of an autistic adult and believe I can see it from both sides. It can be – and has been – extraordinarily hard for many of us as parents raising our autistic children – because of the social model of disability, and of how we have commonly been abused by professionals in our journeys to understand and support our kids better (especially pre diagnosis).
But every time I am reminded of how hard our own journeys might have been, I have to rebuke myself and consider just how much harder it will have been, and continues to be, for our loved ones on the spectrum. Thank you for the reminder. Note to self!
Hi Mike, I’m a parent of a child with Autism, but that isn’t why I’m writing. I’m also an adult with Tourette Syndrome. I’m in a facebook group for TS. There’s a pretty large disconnect between the parents of kids with Tourette and the teens and adults who have it. This is to the extent that people actually snipe at each other. For my life, I don’t know why there aren’t two groups, one for the afflicted and one for the parents. My son’s diagnosis is extremely recent, and he’s a teen, so I spend a lot of my blog reading time on first-person autism blogs. It helps me understand his challenges. But if I’m looking for a group (and after reading your post, I think I might be looking for a group) I want it to be a group of parents. You’re correct. Our needs are very different from adults living with autism. Peace.
You are totally right, I’ve found useless as a source parent from autistic people, it is definitely better to listen to the main source (autist people) and read serious research about autism.