What I Want Autism Parents to Know, as an Actually Autistic Adult
The first, most important thing you need to know is:
This is not a tragedy.
Despite what you hear on all sides from other parents, doctors, “charities,” and especially educators, your entire existence has not just embarked on a sodden journey to the septic tank.
No doubt you’ve heard uncountable stories about how hard life is for autism parents, how they’ve struggled, how they’ve fought for every inch, how they’ve *hemahermahem* tried to “save” their child from the terrible bonds of autism. But one thing you will probably never hear from any of those personnages is:
It doesn’t have to be that way.
Autistic or not, your baby still has a right to live. Are you worried about how they’ll behave? How you, the parent, will be judged on your child’s behavior? How difficult your social life will be? (Not for nothing, but I’ve found that even the social lives of the parents of neurotypical children is nothing to write home about.)
Well, this is the important thing. Critical. Vital. Paramount. Write-it-down-and-stick-it-on-the-fridge-so-you-don’t-forget-it imperative. You, the parent, have the wherewithal to adapt your child’s environment so that even if they do start behaving like holy terrors, a change of surroundings will help to de-escalate the situation, allow them to decompress, and give you a better idea of what they need. This is because…
Adverse behavior is the result of sensory overload, not recalcitrance.
When autistic children are very young, they act out not because of the autism, but because they’re overwhelmed by their surroundings and they don’t yet have the experience to be able to cope. The autistic brain processes sensory bombardment differently from the neurotypical; loud noise, bright light and bright color especially cause huge problems to a child who’s experiencing them all for the first time.
Physical discipline is going to make matters worse, not better. And as natural as it is for you to want to try and calm them down, that, unfortunately, also tends to worsen the sensory overload and the stress they’re already under. Best thing to do? Find a quiet happy place where you can let them calm themselves. In other words:
For the love of all that is holy and sacred, let them stim.
Have you heard of stimming? Yes? No? It’s short for “self-stimulation.” Examples of stimming are flapping hands, tapping feet, shaking legs, playing with hair, cracking knuckles, biting nails, and a host of other small repetitive behaviors that a lot of parents detest. These may or may not be behaviors that you can abide, and you may or may not fear being embarrassed if other people stare down their noses at you because your offspring is stimming in public.
But you’ve got to understand that stimming is good for a kid. “Quiet hands” is a terribly harmful concept; in an extensive discussion with some other autists that was started by a thoughtful autism mom, I read such epithets as:
“Calms and resets the brain,” “relieves stress,” “helps me feel grounded after a sudden emotional change,” “how I channel my stress and helps calm me down,” “helps me hush up the parts of my brain that are being distracting and focus on the task at hand.”
Forcing a child to stop stimming causes them to internalize their nervous energy and worsens the stress on their minds. In the face of the “quiet hands” mentality alongside books like “To Siri With Love” and “Autism Uncensored”, you must keep in mind:
Your child is a human being and deserves to be treated as such.
If you talk with enough autistic people long enough, whether in person or on social media (and I’ll come back to that toward the end), you’ll learn that we are universally tired of being regarded as mindless zoo animals instead of intelligent, thoughtful human beings. We tire of being talked about; we want to be talked with.
We are capable of communicating. Some of us can communicate verbally and some of us can’t, but we have other ways, such as typing, tweeting, sign language, even visual art. You’ve got to get to know your child the way they are; learn how they communicate best, and communicate with them on their level. In other words…
Let them be their own person and don’t force them to become the child you want them to be.
It’s not without justification that the autistic community is up in arms about Judith Newman and Whitney Ellenby publishing their memoirs. Without going into detail of either of their works, I can say that both books are being read and praised by autism parents who find them relatable, because they believed the “tragedy”, “suffering”, “stimming is bad”, “find a cure” nonsense that’s been perpetuated by non-autistics. Thus, they went on to subject their children to sensory hell, and now are convinced that they’ve got an unsolvable problem. But they could have solved it much, much earlier in their children’s lives.
If your child is delayed in communication, cognition, social interaction, and/or responsiveness, you need only be patient. Those will come in their own good time, but they will come nonetheless, as long as they aren’t rushed or forced. You will find that a “cure” is completely unnecessary (not to mention nonexistent). If you talk to autistic people, they will tell you a very, very different story, a story that non-autistics don’t want you to hear. The fact of the matter is…
A lot of autistic people are proud to be autistic.
That’s another thing you can learn by conversing with them in any medium. I’m hyperlexic — I taught myself how to read at the age of two, and memorized school plays so thoroughly that I could easily step into any role if needed. My physical senses are heightened, especially hearing and touch; both of which combine into sort of a “sixth sense” to alert me when someone is following me too closely.
At the risk of promoting a stereotype, a lot of autistic people are, in fact, greater gifted with numbers than with words; some have gone on to become fine mechanical engineers, prolific artists, writers, inventors, singer-songwriters, scientists… the list is infinite.
Autistic people have made vast contributions to the world that the world isn’t even aware of, and they deserve to be given the chance to make even more. Thus, they deserve to grow and develop on their own without any harmful interventions. Although lots of parents and teachers praise the progress children make under Applied Behavioral Analysis…
ABA is harmful and destructive in the long run.
ABA has been aptly described by some autistic activists as “dog training for children”, thereby implying, once again, that autistic children are not human beings but brainless animals. I wasn’t subjected to ABA, although I was subjected to something almost as bad — the terribly outdated “children should be seen and not heard” parenting style by which my folks were both raised. So I have a good idea of how autistic children feel when subjected to ABA, being taught that their needs don’t matter, that their behavior is reprehensible, that they’re damaged beyond repair and they’ll never amount to anything more than everyone else’s punching bag.
There are growing cases of PTSD among teenagers and young adults who were subjected to ABA when they were younger. BUT… if you were to allow your child to grow and develop normally, on their own, without any abusive interventions, they would blossom more beautifully than you could possibly imagine, acquiring new skills based on their keen interests, polishing and embellishing those skills, and eventually making a real difference someday.
One of them might find the cure for cancer. One of them might figure out how to stave off climate change. One of them might even find a survival solution when Earth is no longer inhabitable… but only if they don’t get their intense focus, their keen interests, and their sharp skills ABAed out of them at an early age.
Now you may be wondering how I know all this, who I am to tell you all this. I am not a health professional or a teacher. I’m not even a parent. I’m an autistic adult who lived through the overstimulation, the bullying, the hate, the bad representation in the media, and the ignorance. I was an autistic child once, and I can tell you…
A person never “grows out” of being autistic.
It doesn’t magically disappear when a kid turns 18. It’s part of them from the brain down, therefore it always is, no matter how hard some people try to change it. So don’t give your autistic children the impression that it’s something negative; help them find the positives. How are you going to find those positive traits together? Well, hopefully you’ve taken something away from the previous points I’ve made, and hopefully that something is:
CONVERSE WITH AUTISTIC PEOPLE.
We’ve all been there. We’re still there. There is no visible end to the fight for autism acceptance. But we know what’s worked for us, and we’re always willing to tell real autism stories to anyone who wants to hear them, whether that’s a parent, a researcher, even a politician. Autistic people can give aid to children and families that no psychology professional (much less a Board Certified Behavioral Analyst) can; we can give you pointers on how to avoid sensory overload.
We can life-coach children based on their special interests. Does your son love trains? Maybe he’ll become a locomotive engineer, or at least a professional photographer. Does your daughter love horses? Perhaps she’ll grow up to be a professional equestrian. Do you have a kid who has a knack for memorizing sentences? ACTOR! Is your teenager or young adult obsessed with classic cars? Some restoration shop is salivating somewhere!
The point is that autistic adults know what it’s like, and we can help with honing the skills and the focus of autistic children, who are very likely to have eye-of-the-needle attention to detail. If you’re having difficulties with raising them, maybe some autistic person out there has a unique perspective on another approach. Just go forth and find them, and talk to them. Ask them your questions and listen to the answers.
There are hundreds of autistic activists on social media; there are more in organizations like the Autistic Self Advocacy Network (https://www.autisticadvocacy.org/), the Asperger/Autism Network (http://aane.org), the Autism Women’s Network (https://autismwomensnetwork.org/), Autism Empowerment (https://www.autismempowerment.org/), and numerous other organizations that DO NOT take the same harmful approaches taken by Autism Speaks.
There is much to be said about Autism Speaks, but I’m not the person to say it. Seek out the autistic people on social media and ask them. Just be prepared to hear some, shall we say, unfavorable reviews, including terms such as “hate group” and “eugenicists” and “Autism Speaks-for-itself”. Autistic people have the real stories, and if you want to hear them, we want to tell them.
Just remember:
Autism is not something to fear. It can be something to celebrate.
Christiana MacLeod (known in the autistic community as “The Black Wildcat”) is a real-life superhero living in southern New England. As a kitten, she lived through the same tribulations as any other autistic child — meltdowns, misjudgment, overstimulation, hatred, lack of faith from the adults in her life, and being bullied by teachers as well as peers. She nevertheless survived those struggles long enough to read an article about Asperger’s Syndrome and find one light bulb after another (incandescent and soft white, much easier for the eyes) switching on. With a sudden profound understanding of herself — finally knowing that she wasn’t “broken”, just “differently made” — she went on to identify autistic traits that she possessed, that made her a better, stronger person. Today, she counts herself lucky to be alive and proud to be autistic.
When not working her full-time job in transportation and logistics, she spends most of her time writing fiction or advocating for autism acceptance on social media; she is determined to spread the message that autistic people’s strengths outweigh their drawbacks. In addition to her original catchphrase, “Fear No Darkness,” she has recently adopted the motto “Let Autistic People Live.”
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I mostly write about parenting. But I also enjoy reflecting on life experiences, people, and issues in our society.
