Parents of Autistic Kids: We Really Want You To Know This
Since my realization that I am autistic, I have noticed that there is an incredible gap between the community of parents of autistic children and the autistic community itself. If you are a parent of an autistic child, here are 11 things that, as autistic people, we really want you to know:
- Autism is an identity before it is a condition. The autistic community is largely not on board with the current medical view of autism. Dominant definitions of autism are still based on the neurotypical interpretation of our external behaviours, rather than the actual, internal experience of being autistic. Autism is, first and foremost, a way of being, an identity. It comes with disabilities and challenges, and also just differences from the neurotypical majority.
- The only way to love your autistic child is for what they are, not for what you think they could be. There are still too many parents of autistic children who believe that autism can be “cured.” Attempting to “cure” autism out of someone is the equivalent of attempting to erase their existence. As a parent, (I hope that) you want the best possible life for your child. That is measured by the child’s happiness and not by how normal, or even functional, they are. Nothing is more valuable to an autistic person than being accepted and celebrated for who they are — acceptance without celebration is mere tolerance, and as autistic people, we already get a lot of that. Some things can perhaps make your child’s life better, and autistic people can grow and learn within the limits of our own being, but improvements in an autistic person’s quality of life should never be seen as improvements in their very autism. Remember that your child is right in front of you and not in a future version of themselves in which they are better.
“I’ll tell you what freedom is to me: no fear. I mean really, no fear! If I could have that half of my life…No fear. That’s the children — they have no fear.” — Nina Simone
3. ABA is not an acceptable therapy for autism. The autistic community is unanimous on this: ABA is harmful, traumatizing, and cruel. Do not listen to any “expert” who advocates for ABA. ABA teaches children that who they are is not acceptable and to suppress their psycho-physical needs for fear of the consequences. It is not effective in “improving” autism; it is effective at enforcing masking out of fear and shame. The fact that ABA is still so widespread is a testimony to how little “autism professionals” actually listen to autistic people. It’s essential that power is not mistaken for representation — the “autism sector” does not represent autistic people. Please do not put your child in ABA.
4. Your child’s behaviours always have a reason. As autistic people, we act differently. Our behaviours are often framed as problems or expressions of deficits in our skills. However, it is essential to understand the reasons of our behaviours. For example: I know the case of an autistic child who bangs their head and picks their skin until they hurt themselves. Professionals involved in the child’s life have proposed ABA “therapy” to correct these harmful behaviours. ABA would teach the child that these behaviours are wrong, and as a result, the child will suppress their biological needs, with devastating consequences. The solution lies in asking: why does the child bang their head? She does that because she is overstimulated, and she is cleverly using that stimming to keep her nervous system in check and avoid painful meltdowns. So, the solution is: adults can explore with the child both what the sources of overstimulation are (to remove them) and what alternative kind of stimming can have the same positive effect — for example, something that provides pressure on the head or music of some kind, or anything else that works for that child in particular.
“People like me — who have Asperger’s syndrome and autism, who don’t follow social codes — we are not stuck in this social game of avoiding important issues. Sometimes I feel that it might be good if everyone had a tiny bit of Asperger’s…at least when it comes to the climate.”– Greta Thunberg
5. You may know your child very well — but that doesn’t mean that you know autism from the inside. Unless you are autistic yourself, you have not experienced autism first-hand. You may perhaps know your child’s needs and personality very well, but as the saying goes, if you’ve met one autistic person, you’ve met one autistic person. If you know your child, you know your child — please be mindful of not projecting what you know of your child onto other autistic people. If you meet another autistic person (child or adult), please don’t immediately compare us to your child. No one is more of an expert on autism than autistic people themselves — please let the community talk for itself rather than talking for us in the third person in public fora. Our voices are already very silenced, and we want to talk for ourselves (notice that I say “talk”, not necessarily “speak”). As much as you can be close to an autistic person and autism may be part of your everyday life, if you are not autistic, you are still seeing the autistic experience from the outside.
6. We know it’s hard. But please don’t frame your kid as a burden. This is, unfortunately, a common theme among many parents of autistic children: how much of a burden their children are. Now, it’s important to be real: autism can be really hard at times (especially in this world), both for the person who lives it and for those around them. You may be making superhuman efforts to take good care of your child, and you may be craving some recognition for that. However. At the moment, there are more support groups out there for carers of autistic people than there are for autistic people themselves, who live with this disability every day. You do deserve to have support and acknowledgement of your efforts, but that is different from talking about your child like they are a burden. That will affect both your child and other autistic people. We are here. We hear whenever people talk about us like our existence is a problem, and your child will hear too.
“Whenever I overhear someone remark how much I prefer being on my own, it makes me feel desperately lonely. It’s as if they’re deliberately giving me the cold-shoulder treatment.” — “The Reason I Jump”, Naoki Higashida
7. There is no need to be ashamed of your child. I was on the underground once, and a small child was sitting next to me. He was restless, likely overstimulated by the underground experience, and at some point, he kicked me — lightly and probably by mistake. His dad jumped up, saying, “I am sorry, I am so sorry, he is autistic.” He was visibly very ashamed. He did not need to tell me that his child was autistic, and he didn’t need to be ashamed of that. An autistic child notices when the people around them are ashamed of them for behaviours they can’t control, and they will learn to be profoundly ashamed of themselves in turn. Your child may act wild at times, and that’s fine. It’s also fine to apologize if it’s needed. But as a parent, you can accept that your child acts differently, without having to feel ashamed of them. They’re different. They’re themselves. It’s fine.
8. Ehm, have you ever considered that you may be autistic yourself? Autism is a genetic neurological structure, and it travels in families — just saying. Obviously, you can be allistic and have an autistic child. But if you love to collect weird stuff, hate being asked how your weekend was, love your interests more than your life, have a strong attachment to a certain cup, can’t stand the sound of someone chewing, and always start mowing the lawn from the same spot…you might want to ask yourself some questions. Just for the pleasure of wondering.
9. As autistic people, we yearn to be treated like everyone else. We are used to being the exception everywhere we go. We are also used to people constantly reminding us of that by reserving a different treatment to us — whether that’s an extra “sweetness” in their tone, a change of demeanor, or a certain coldness, or even outright cruelty: we don’t go one day without being reminded that we are different. We are just people. We are begging the world to just treat us like regular people, even though we appear different — because we can tell. Treating your child like a regular person will remind them that before being autistic, they are just human.
“I used to be the type of kid that would always think the sky is falling
Now I think the fact that I’m differently wired’s awesome
’Cause if I wasn’t I wouldn’t be able to work
Words like this and connect lines like crosswords” — “Legacy”, Eminem
10. Beware of stereotypes! I know, I know. You would never stereotype your own child. But you know, stereotypes have a way of getting under your skin, travelling straight into your subconscious. Whatever you hear or know about autism, it’s important to remind yourself that your child is unique. Some people, for example, are autistic and extrovert, or autistic and hate routine, etc. — we are all different.
11. Listen to the autistic community. The autistic community is very vibrant and active these days. There are plenty of initiatives, podcasts, and books done by autistic people, about the autistic experience. Get acquainted with autistic culture and our takes on the social world. We have a lot to say that a psychiatrist holding a checklist of “behavioural symptoms” will have no idea about. Unless the psychiatrist is autistic, of course.
Thanks for reading — leave a comment if you like!
