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:


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.


IMG_20180219_201750925Christiana 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.”


16 Replies to “What I Want Autism Parents to Know, as an Actually Autistic Adult”

      1. My friends son was just diagnosed this week so it was perfect timing to send something so brilliant – before all the other morons got to her first! I am keeping that post url handy so I can share with others because it’s like a lighthouse in a storm of some truly bad information for autism parents, family and friends.

        Liked by 2 people

  1. Having an autistic child has been a luminous experience for me, as I’ve said many times. Society focuses way too much on socialization instead of recognizing and allowing the child’s strengths to blossom. I decided to start blogging to share my experience because I also was preoccupied by the mainstream depiction of autism, which is not necessarily conducive to the adoption of good approaches.

    It’s been wonderful to read autistic people’s blogs, but in all honesty, sometimes, parents’ perspectives are not welcomed in activists’ discussions (or at least that’s how it feels), which I can understand I guess and I do want to encourage autistic activists efforts to be at the forefront of autism discussions. I wonder if many really think that parents mostly care about what other people think of them and that’s why they suffer from having a child that is different (ex. scared of him stimming in public, etc.). I’ve read that a lot before. If I was to write a “What I want autistic people to know about parents” post, it would be about this, the fact that the overwhelming majority of parents who hurt, hurt from seeing their child struggle and suffer. I believe that is THE reason for parental suffering, plain and simple (I should say that I have not been through this because my son and I aways found ways to communicate, and he always looked happy and resourceful). That’s why posts like yours are incredibly important and useful to turn this around, to help parents who believe a child stimming is a child suffering, for example, to help them understand that it’s actually a positive self-regulatory behaviour that helps!! Maybe, because of posts like yours that build bridges and provide information, there will be less suffering all around. I’m concerned and sad about all the hurting.

    Thank you, Christiana, for taking the time and effort to write this for us. And thank you Not an Autism Mom for sharing it. And thanks to people behind the wonderful Actually Autistic Blogs List who gave me the links to so many cool blogs by autistic people. And sorry everyone for writing yet another neverending comment…

    Cheers from Montréal! 🙂

    Liked by 2 people

    1. Aw, thank YOU for your kind words. I think we would welcome more parents’ perspectives in our discussions if they weren’t trying to shut us up. If more of them asked about our experiences — as NAAM did, which is why this blog got written and shared in the first place — we’d have a great deal less animosity and more harmony and inclusion for everyone.
      I’ve already received a negative comment on Twitter (which I was expecting), but if that conversation continues, I think there’s a way to make a productive dialogue from it. Watch carefully as the Autistic Revolution moves onward and upward!!!

      Liked by 1 person

      1. That’s great! 🙂

        I’m sorry the conversation hasn’t always gone well between autistics and parents – it still baffles me since we’re all on the same side, in theory. I’m 100% certain the discussion can be productive though (I’m talking in general here, I’m not on twitter and don’t know which comment you’re referring to). There may be some sensitive subjects, but that’s fine too, the key is respect. And respect for those first concerned, first of all.

        Liked by 1 person

      2. I am an parent of an autistic child. I would say he has been my greatest teacher. I am a better person for being a Mum to him. He questions everything. He reminds me to question everything. I believe ABA is abuse, I do not believe he is broken or needs fixing, I celebrate my child as every parent should. the person you describe in this blog is not me but I do recognise the behaviour as I have come across it, I hate to hear the way some people speak about their children (autistic and non autistic), please don’t judge us all my a few parents with loud voices who would are not prepared to change, be flexible or put themselves in someone elses shoes even for someone they delibrately brought into the world. I am lucky as I have adult austic family members to ask about stuff when my son is not able to communicate clearly whats happening for him, I think it is so important that we keep the lines of communication open between parents of autistic children and autistic adults to help all understand each other better. Unfortunately those who shout the loudest aren’t able to hear the voices of anyone else including their child but we are not all the same.

        Liked by 1 person

  2. This is what I want for Cody. My favorite saying that I have seen is that “Autism is not a processing error. It’s a different operating system.” Cody doesn’t need to fit into the box…he deserves to be who he is, where he is. I think that stimming lets him bridge his world and my/our world, safely and naturally. He is only 3, does not use words to communicate, yet he lives and thrives in his space. He has built bridges, created ways to communicate, and taken in every detail of the world around him. He is 3. He is smart. He is strong.

    I see a lot of posts about the tragedy of the diagnosis, the mourning, the grief, the loss. It honestly annoys and saddens me. I can’t relate to it. The diagnosis was a relief…it took sooo long to get and it opened the door to services. Speech and OT and pre-K and play therapy. Fun activities that help us help him bridge worlds. Hopefully an assistive communication device soon to make bridging worlds easier.

    Cody laughs and plays and loves. He is a good big brother and loves animals. He is carefree and active, and has been dubbed “Hurricane Kid.” He is my miracle baby and I am proud of him.

    We have struggles. Verbal stimming triggers migraines in the parental figures. We need to help find volume control. Sleep deprivation challenges us all. (We sleep in shifts.) Frequent reminders of “gentle hands,” “gentle feet,” and (yes really!) “Gentle teeth.” All things to work on.

    I connected with this post. It made me feel, it made me think, it made me smile. It made me need to write. So I did!

    Liked by 1 person

    1. My kid was also diagnosed at 3. He was such a cute smiling laughing busy-body already back then, and he evolved to be the wonderful boy and amazing big brother that he is. He learned to talk in an unexpected way (through echolalia first, then through “associations” which got more and more intricate, and adapted to each context). And now he loves to discuss things, read, and he writes and draws his own comic books! Basically, he learned in his own way. We’re unfortunately stuck in quite the standardized world, but the family house can be a little safe haven for our children’s creativity. Keep your positive attitude, your child will keep on surprising you. Of course there are struggles, but there are also amazing discoveries. Your child communicates through his own channels, and manages to convey his happiness very well it seems ! What a little ray of sunshine 😀

      Liked by 1 person

    2. I’m very happy to read that you recognize your son as a person with enormous potential and not an unbearable burden on your life. ❤ And you never know, he may yet become verbal — it could simply be that he's determined to get speaking just right before he tries it. Even if he doesn't, non-verbal people still have a great deal to offer if they have the right support structure — and he's already got an understanding mom, a great cornerstone!!


      1. Cody may become verbal…he may not. He may gravitate to an assistive communication device. He may pick up some more sign language. Or a combination. 😊 It is his world. I see my responsibility as giving him tools to communicate. It is completely up to him what tools he uses. He has our love and support either way!

        Liked by 1 person

  3. Wow! What a wonderful post. My son is awaiting diagnosis and you have no idea how much weight you have just lifted off my shoulders by writing this. There is so much misinformation about Autism and to hear it from yourself that it is not the end of the world and in fact could be the absolute making of my son, well, I have no words for how that’s made me feel. Thank you for your eloquence and for this brilliant post!!!

    Liked by 1 person

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