An Open Letter to Parents of Autistic Children.5 min read

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.

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9 Comments

  1. I am para­noid of Mom talking about me behind my back , anyone else?

    1. I have been con­tacted by strangers to tell me what mine has said, haha

  2. 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.

  3. Nice one Mike. They make us extremely anx­ious all the time and many tend to talk over the top of us.

  4. 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!


  5. 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.

  6. 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.


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