To the People Offering Unsolicited Advice About My Son's Autism
To people who give me unsolicited advice about my son on the autism spectrum: I know your intentions are good. Despite the fact that autism diagnosis are on the rise, I’m still the one person you know who is directly affected by autism. To be clear, I am not autistic, my son is, and to be fair my “affected by autism” is nothing in comparison to his living with autism. That being said, his autism is a major part of my life. I get it that you understand autism through my lens because what else is your direct exposure to autism? It’s hard to convey the very real and immediate necessity for me to understand him.
Autism is not bad. I love my son and I want to do everything I can to help him survive in the world while allowing him to be him. I read autism books, I follow autism pages and groups, search medical and research updates. We are constantly juggling therapy and strategies and IEPs. I help him battle sensory sensitivities and anxiety. I’m empowered by reading and sharing stories, and simultaneously conflicted when I read how ABA is an evidence-based coping strategy that many actually autistic adults describe as torture.
I love my son. Because I love him, I do everything I can to accept him as he is while preparing him for a world that might not. Now my inherent belief is that people are more often good than not and most of our conflict comes from misunderstandings instead of actual malice. So let’s get into it. The world is made for “able” people and it is so easy to take that privilege for granted. Sensory stimulation can lead to meltdowns, changes in routine can send our whole day into a tailspin that can last from hours to days. If you don’t live it, how can you truly understand it?
Enter the well-meaning friend / coworker / teacher / acquaintance. “So I watched this show on keto and autism.” My phone lights up with a message and a link to an ad for the benefits of CBD for autism. A comment in regards to a FB post “I think it’s just great the attitude you have towards autism, and how much you do for your son. Have you thought about going gluten-free?” And my personal least favorite commentary: “You must be a special parent to do so much for your special child. He was given to you because you were capable of handling him.”
I recently had a disagreement with a beloved friend who casually asked, “What is the problem with going gluten-free? It’s a small change, and if parents say it works, why wouldn’t you try it?” This casual inquiry came from a close and trusted friend, someone who knows and truly loves my son, but it just reminded me how very different our lives are. “What’s the problem with a diet change? It’s not a big deal.”
On the verge of tears, I tried to explain how this one time I bought the wrong yogurt (same flavor, same squeezy pouch, different brand with different artwork on the package) and my son who loves yogurt refused to eat it. The change that seemed insignificant to me was monumental to him. “That’s not my yogurt, Mama.” He was upset. I was upset. He was still hungry for yogurt, but couldn’t be comforted from the disappointment. What difference does a small change make? To him it matters. And to me it matters. And don’t even get me started on the fact that some kids on the spectrum really struggle with eating at all. It matters.
So much unsolicited advice comes from the pervasive idea that autism needs to be “cured.” I don’t want to medicate him or make strict diet changes to make him easier to manage. I don’t want my son to sleepwalk through life because meltdowns are embarrassing or frustrating. His meltdowns are an indication of a deeper and often unseen problem of anxiety, control or sensory issues. Maybe if the world wasn’t so noisy, he wouldn’t have such an adverse reaction. Some things we can’t control, though, so our only option is to cope. And yes meltdowns are hard, and yes I probably complain about how hard it is, but a meltdown still isn’t something to be “cured” — it is something to be understood, and understanding is something I can be better at. Some things associated with autism (such as self-harm) absolutely are important to address and can’t be ignored. It doesn’t mean we’re “curing” him, though.
Witnesses to such a disagreement may believe my reaction to a “harmless question” is overly emotional. But my reaction is emotional because his challenges in life are largely invisible and/or misunderstood by the population of neurotypicals, and our attitudes and accommodations towards disability as a society further marginalize his experience. What appears to be a harmless inquiry or a topic of conversation in passing only reinforces to me how much people really don’t understand our situation.
I don’t want a fad diet, I want evidence-based research. That’s not an emotional response, it’s a responsible one. I’m not going to submit my child to the very real stress of a diet change without actual evidence that it will benefit him. And by benefit, I don’t mean manage his negative behaviors. Research and evidence matter. If you are a parent who swears by diet changes, I support you in your choice to do what you think is best for your child on the spectrum. What I think is best for my child is to carefully weigh the pros and cons of any kind of treatment method, and for me that means weighing the actually validated evidence against the potentially harmful consequences.
I have an ethical obligation to consider how much making him “fit in” could be psychologically damaging. I’m sorry random stranger on the internet, but your personal testimony of the life-changing benefits of keto for autism are simply your opinion and not evidence-based enough for me.
Lastly, casual comments in regards to “that one thing you saw that made you think of us” hurt me. I appreciate how much you are trying to connect with me and support us, but our day-to-day struggles are still just a casual topic you consider in passing. You have the luxury of reading an article here and there, while I’m consumed and overwhelmed by trying to do the best I can for my son. No matter how much I try to be an open book, I still feel like many people I care about don’t fully understand me or him. And I think that speaks to the cloud of mystery and misinformation that still surrounds disability.
I want to do better, and I want his needs to be validated. So when you want to tell me about this thing you saw, remember our daily life means more than an interesting article. If you want to support us, start by really understanding us before making a casual suggestion. Don’t offer unsolicited opinions until you are responsibly informed. I’m still trying to attain that very goal.
Getty image by Nadezhda1906.