Most attempts to “help” autistic people are about making those around them more comfortable rather than acting in the best interests of the person. Parents, teachers and therapists need to shift their attitudes about autism.
By Juliette Dunn
Note: Fake names and minor changes will be used to protect the privacy of the people involved in the incident I describe.
A young child dashes down the street, sobbing, while his teacher screams. He rushes to the safest person he knows, his speech therapist, and clings to her.
I am passing them, and even though the child is in severe distress he is told to say hi to me. He doesn’t make eye contact or speak, but he spins in circles. I recognize this behavior, and a moment later my hunch is confirmed, as the speech therapist explains to me that Alexander, the little boy, is autistic.
There are more encouragements for him to say hi, or acknowledge me in a way that neurotypicals view as acceptable. Behind us, the teacher is still screaming. Alexander states that he’s going to run away. PE that day had been difficult. A basketball activity was planned, and Alexander was so terrified by the pounding noises that he fled.
The speech therapist is trying to calm the teacher down, but she won’t have it. She yells for the speech therapist to do better, to make him participate. The little boy moves away from the screaming and clings to my arm. “Let’s run away,” he whispers, and tugs me down the sidewalk. “Come on.”
The lure of escaping from this situation is powerful for me as well. I understand the terror he is feeling. I too am autistic. I know how traumatic “normal” activities can be.
Traumatic, you might ask? I admit it sounds melodramatic. Surely being forced to participate in basketball won’t cause trauma? It’s just a ball.
The manner in which autistic people react to the world is always viewed through the neurotypical lens. When we scream at noises, people wonder why we would react so strongly to something which really isn’t that loud. If a child refuses to wear their clothes, people sigh in exasperation that they would be so difficult and disobedient.
But the autistic world is entirely different from the neurotypical (NT) one, and cannot be understood through the NT perspective. Senses are subjective. There is no objective “sound” or “color.” These concepts are perceived via the way our brains interpret them for us. Dogs see color entirely different than humans do, and a cat can hear sounds that we never could. There are no sounds that are loud or quiet to every living thing. Individual humans, too, experience senses differently based on their brain wiring.
You hear a buzzing from the lights? Magnify that ten times and have it right next to your ear. That is what an autistic person hears. You’re wearing a shirt? Imagine if it were sandpaper. Tag on your sweater? It’s a blade digging into your back.
This is the reality that autistic people live in, and it isn’t any more or less correct than NT reality. We are simply equipped with different sense processing. So while the sound of a basketball pounding on the floor may be annoying to you, to an autistic person it is like a gunshot firing over and over again, directly beside their ears. Why would anyone subject a child to that?
Alexander’s mom, like many mothers of autistic children, grieves for her child. She sobs he will never be “normal” and will never have a happy life. It’s the view of many who know autistic children who need high levels of support. How can this screaming, flailing child who can’t stand typical clothing and can’t even verbalize ever have a happy, fulfilling life? Their lives are “lost” to autism, and the parents’ dreams for them are crushed.”
Those who are “high-functioning” are different, of course, and get praised for being geniuses, and will have “normal” lives. But the ones in need of severe help will only have a half-life, one of misery, trapped in their own minds, with the healthy, typical child inside unable to break free.
When it comes to the lives of autistic people, paticularly those severely affected, the choice is always up to the caregiver, and the autistic person is treated as though they do not deserve or are not complex enough to make their own decisions about life. It is the caregiver’s burden, the therapist’s choice about what behaviors to “fix,” and any communication from the person is treated as simplistic, as if they are not fully deserving of the rights every person needs.
We have no privacy.
Meltdowns are put on the internet for all to see, as if someone’s worst moments are something to put on display for “awareness.”
We have no autonomy.
Many forms of Applied Behavioral Analysis (ABA) force autistic people to comply to neurotypical demands. Victims have things taken from them until they comply with every wish, even if that means making uncomfortable or even terrifying eye contact, being prevented from walking away from a situation they are uncomfortable with, and hugging people who they don’t want to hug.
We have no say.
Autistic people are talked about as if they cannot hear or understand what is going on, as if the choice is not up to them but their caregiver. They are treated like an extension of their caregiver instead of their own individual, or like some lost, orphaned puppy that someone had the good graces to take care of even though it’s a handful. People speak of how hard it is to live with an autistic person and the sacrifices that must be made, how good people are to deal with it, as if we are incapable of understanding what is going on and of choosing our own direction in life.
The view that autistic people are not fully deserving of their own independent lives is the dominant paradigm, and it has been for decades. As a result, we see attempts to do what that teacher was doing, and force autistic children to conform to NT behavior rather than understanding their needs and teaching them that they can self-advocate and stand up for their rights. It’s time to listen to autistic voices to truly understand the autistic world.
To Autism Parents
This post is going to discuss the parents of autistic children and mistakes they often make, but I want any autistic parents reading this to know that I don’t feel animosity toward you. In fact, I respect the love you have for your child, that you want to do what is best for them, and that you face hurdles that other parents may not face. You are worthy of respect and of having your emotional needs met. A society which ignores the disabled can make things difficult not just for autistic people, but for parents trying to access therapies and tools that their child needs. Many parents are left to support their child all on their own, without resources to help teach their child to cope with meltdowns and other stressors.
I don’t want a fight, or an us vs. them, autistic adults vs. parents mentality. I want us to listen to each other and unite around the goal that we all share — doing what is best for autistic children. We are not enemies, but allies in facing a world which disadvantages the neurodivergent. You are crucial in protecting and defending your child’s rights. The remainder of this article will be spent advocating a new paradigm for raising autistic children no matter what level of support they need.
Forcing us to Act Neurotypical is Abusive
The most common form of therapy for autistic children is Applied Behavioral Analysis, or ABA for short. While many therapies go by the name of ABA, the type discussed in this article is the kind focused on teaching absolute compliance with the therapist and “treating” a child’s harmless behaviors such as stimming instead of focusing on their needs. Children may have things withheld from them and be prevented from leaving until they display the desired behavior, such as ceasing to stim or holding eye contact.
While the days of electric shocks and other aversives for engaging in natural behaviors such as stimming are gone (the FDA just put the final nail in the coffin by banning its use), this therapy is still abusive. The harmful practice is a byproduct of the view that the neurodivergent need to be made “indistinguishable from their peers,” and that what is best for them is to be taught to act like an NT.
We know this is harmful. ABA, while effective in ending behaviors such as stimming and in getting autistic children to interact in the NT way, is also linked to PTSD. In a study of those who had ABA as children, 46% were found to meet the diagnostic threshold for PTSD. “Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA.”
Why would this be so traumatic? Because it forces children to go against their very nature. Imagine a world in which everyone is autistic except the select few NTs. You are one of these NTs, and you are enrolled in ABA. In it, you are forced to spin in circles and flap your hands when you see people. When you attempt to smile and wave or hug people, you have items withheld from you until you express joy in the way your therapist wants you to.
When you get stressed and seek out comfort, such as through listening to music, sipping a coffee, or whatever else you do, you are forced to stop, and told that you are “wrong” and that this is a sign of a “disorder.” You must avoid doing these behaviors because it makes others uncomfortable.
Your whole life you are trained not to smile, not to hug, not to comfort yourself in the ways you see fit, but instead express yourself only as society wants you to. When you are stressed out or scared, instead of getting to the root of why you are scared you are forced to stop the behaviors you use to calm yourself. You keep being forced into clothing that scratches and digs at your back like knives, and when you try to break free you are punished.
This is the reality that autistic children experience. It’s what comes from a model of autism therapy which, rather than starting from the needs and emotions of a child, starts with eliminating their behaviors. Rather than helping them learn to cope with what is stressing them, they are taught to pretend nothing is wrong and remove their soothing strategies. To what purpose? Because it is more convenient for those around them. ABA doesn’t have the best interests of the victim in mind; it only serves to make those around the victim more comfortable.
Autistic people stim to soothe ourselves or express happiness. This can take the form of hair twirling, hand flapping, spinning in circles, rocking, or verbal noises such as hooting or repeating favorite words or phrases. Many autism therapies work on stopping this stimming behavior for no valid reason.
NTs might think it’s odd when a teenager or adult won’t stop fidgeting with their hands, but when the autistic person withholds this behavior it has damaging effects on their mental health. You can find thousands of personal accounts of autistic adults suffering from anxiety and depression, only to discover that much of it stems from the suppression of natural behavior that helps calm them.
It is hard for NTs to understand the relief that comes from stimming, but it accompanies us autistics in the most joyful and fearful moments of our life. Stopping us from doing it may make some people not as weirded out by us, but it will lead to mental illness in the future.
And, truly, what is wrong with stimming?
Most stimming isn’t harmful. Hair-twirling, spinning, and rocking don’t hurt the autistic person or the people they’re interacting with. They actually help prevent this, as suppression of stimming leads to more anxiousness and can lead to an autistic meltdown.
There are many behaviors that society has felt uncomfortable with at one time or another, but are accepted now. That’s because the culture around them has changed. Culture and acceptable social behavior are constantly changing, and it can change for autistics.
Instead of focusing on emotional suppression, we could focus on normalizing stims so that people don’t even blink an eye at someone flapping their hands in excitement. It’s not as hard as you might think, and the more people who are free to stim, the more people encounter it and it is normalized.
Similarly, when autistic children scream at the clothes they are forced to wear and take them off, the first reaction of many is to try to force them back into them. That’s the behaviorist approach, which ignores the internal thoughts and sensations a person is experiencing.
Autistic people don’t take off their clothes for fun. It’s because some materials cause unbearable, painful sensations that they can’t ignore. Instead of forcing them to endure this pain, which a neurotypical child would never be forced to endure, people should work with them to find comfortable clothes. This may mean cutting off tags, finding socks which don’t have obtrusive seams, and seeking out alternate clothing materials. It may be considered unusual, but it is necessary for autistic children to not be in constant pain.
Subjecting children to trauma that leads to PTSD isn’t worth making social situations slightly less awkward. Letting autistic people be free to stim and listening to us when we tell you we are in pain (meltdowns are at their core a sign of distress, not whininess) teaches us that we have the freedom to express our emotions, and encourages us to not hide them but instead advocate for our needs in the way that feels natural to us. NTs would want us to do the same for them in a neurodivergent society.
Non-verbal Doesn’t Mean Unconscious
Another way in which the dominant paradigm ignores autistic voices and instead views things only through the NT lens is in the matter of non-verbal autistics. Some autistics are non-verbal as children, but later on learn to verbalize. Speech therapy can encourage children to learn how to communicate verbally. But some autistics will remain non-verbal for life, and that doesn’t mean they are doomed to a life of misery, or that they can’t communicate.
Too often, people use “communication” and “verablizing” interchangeably, but if that were true than the deaf community would never communicate. And that was what many believed before sign language became commonly accepted. Deaf people were (and sometimes still are) viewed as stupid and forced to continue speaking verbally even though it has no meaning to them. The social acceptance of sign language opened up a whole new world for people that hadn’t previously been listened to when they tried to express their feelings.
An autistic child may not be talking to you, but they are certainly communicating with you in other ways. Even the most severely mentally disabled person communicates. It may be through noise — a child might seem to repeat random phrases they gathered from TV, but they are likely using them to express themselves. Even if the only sounds they make are groaning or hooting noises, it is still a form of communication. If speech therapy doesn’t result in increased verbosity, you might consider teaching your child sign language. This has worked wonderfully for many non-verbal autistics, who can fully express themselves without speaking.
In the age of technology, non-verbal communication is easier than ever. Writing programs abound for those who like to type out their thoughts, and there are even systems that can give someone a “voice” even when they don’t speak by reading their words aloud. Letterboards and apps on phones all present different ways to communicate. It is not a tragedy that someone might never speak. Verbal language is just one form of communication, and many sign-language users have happy, fulfilling lives. There are many non-verbal autistics who communicate very well through other means, and achieve success.
Non-verbalizing also doesn’t mean your child doesn’t understand language. Even when a child doesn’t seem to respond to anything, it is best to assume they can understand. Many autistic people comprehend more than NTs may be aware of, and speaking about how difficult your child is in front of them can cause damage. Some of us may not communicate in the typical form, but we are aware. There are many examples of people believed to not be aware of their surroundings that were found to have complex, aware thoughts once they were given the chance to communicate in a way that works for them.
Instead of assuming someone doesn’t communicate because they don’t express themselves as most people do, look for the ways they do communicate. As emphasized in the previous section, look to their thoughts and feelings to understand their behavior.
For example, a mother may think her child never expresses affection because they never say “I love you” and scream when she tries to hug them. This doesn’t mean that the child doesn’t love her. The child will express affection in other ways, and it is up to the parent to work with them in figuring out what those ways are.
Did your child ask you to join in an activity, or hand you one of their favorite objects? They are reaching out to you. Something has caused them joy, and they are trying to share that joy with you. Pay attention when your child shows you something, and engage with them in their interests.
Remember, autistic people’s tones and expressions don’t always appear to correspond with our feelings, so even if your child doesn’t seem engaged with you, they likely are. It may not be in ways that you expect, but autistic children display just as much love as NT ones. We need to move beyond what we expect emotion to look like and work to understand what it looks like in each individual.
Needing Life-long Support Isn’t Tragic
While many autistic people can live independently, others will always need a certain level of support. This may involve a community-living center or a caregiver. They may or may not have a job. But no matter how much or how little support they need, their lives can be just as fulfilling as anyone else’s, and they have a right to autonomy.
Our society still holds the view that everyone must achieve complete independence, leaving our parents at age 18 and striking it out on our own. People who “live in their parent’s basements” past 18 are viewed as lazy and exploitive members of society. This is a result of basing the worth of a human on their contributions to business. Humans are productive members of society if they hold jobs and don’t rely on others, but they are lazy if they need help. This is not just a harmful worldview, but a false one.
Everyone needs some level of support in life. The human species has hundreds of years of evolution encouraging us to rely on one another for support. We are social animals, and we care for each other even when there is no immediate reward. Why? Because everyone is going to need support at some point, and everyone will become disabled as they age.
The question is when, not if, we are going to be disabled and will depend others to help us in adult life. Some need it right away, others don’t, but everyone will face this. It is a natural and inevitable part of being human, and there is nothing shameful about it. It’s what the social wiring of our species is made for.
So when someone needs support sooner than others, there is no laziness taking place. Society teaches us that the only fulfilling way of life is one of independence, but that’s not how many societies have functioned historically and presently. There have been many variations on adulthood throughout the past, and in some cultures people stay with their parents long past 18. These people aren’t miserable.
Someone may or may not have a career, get married, or do any other number of things accepted as the trademarks of a “fulfilling life.” And there’s nothing wrong with that. There is no one-size-fits-all standard for having a fulfilling life.
Many parents grieve over “lost dreams” they had for their children, but it is their child’s life, not their own. No child is bound to their parent’s wishes for them. They are their own seperate beings, and must seek out the life that will make them happiest. People find their own happiness and fulfillment. If we all needed the same things to have a good life, it would be unattainable, since not everyone can achieve the same thing.
Luckily, happiness in life isn’t always found through traditional milestones like marriage, children, and having a career, but mostly through the little moments. Someone may spend their whole life in a community-living center, and be happy and fulfilled right up to their death. They may find meaning in the bonds they make with friends or family, or their hobbies or special interests, perhaps painting or learning about mythology. That is no less or more fulfilling than someone who finds happiness with their spouse and children, or a career in engineering.
There is no tragedy in someone needing support throughout their life. The only tragedy is that people believe someone is doomed just because they won’t fulfill society’s obsession with conformity and sameness in lifestyle.
Live Life By Your Individual Needs
Autistic people are raised in the belief that we must change the way we express ourselves to fit neurotypical society, and that if we are unable to achieve the typical life milestones then our lives will be unfulfilling and miserable.
As a result, we are driven deeper into anger, depression, and anxiety, and we lash out. Instead of being taught coping skills that support our individual needs, and of addressing our problems through their cause, we are taught to hide our communication methods and bury our trauma deep inside.
Meltdowns and violent outbursts aren’t tantrums, but a form of communication. Instead of stopping their methods of communication, care for autistic children should focus on what is bothering them and teaching them ways to work around it. Focusing on addressing the thoughts and feelings that lead to behavior, not the behavior itself, is the best way to help any child grow into a healthy adult.
There is no reason you have to live life as an NT would. This is a byproduct of conformist society. We all have varying needs, whether we are autistic or not, and the best way to be fulfilled in life is to make sure we are living it in the way that makes us feel best. If someone isn’t hurting others, then stimming and non-verbal communication is a valid way to communicate. Not everyone can be independent, and eventually we all will need to depend on someone, so needing life-long assistance doesn’t doom you to misery.
The conformist view of life must shift, and to do that we need a change in culture. Societal views of autism have already changed for the better, but we must support not only those autistic people who live independently and are viewed as “quirky,” but also those who will never live on their own and cannot speak. They are no less human, and their methods of expressing themselves must be affirmed.
Going back to the little boy at the beginning of this article, you can see why I wished so much that I could run away with him to keep him safe from the struggles, misunderstandings, and abuse he will face time and again.
But this is reality, and he has to go back to class. “Don’t make him play basketball,” I say. “There’s no reason for it and it terrifies him.”
“He needs to learn,” says the teacher, shocked at such disrespect from a student. “His behavior shouldn’t be indulged.”
However, despite the teacher’s wishes, Alexander is taken away by his speech therapist. He escapes from the gunshot sounds today, but tomorrow is another story. How would things be different if the teacher had paused to look at things from his perspective? If she had thought about forcing the other children to experience loud and truamatic noises day after day, while they screamed to escape, and realized that it would constitute abuse? If she hadn’t taken Alexander’s flight from the PE room as naughtiness, but as the only way he knows to communicate his distress and to get his needs met?
Maybe she would have worked with him to find an alternate physical activity, one without such loud noise. Maybe she could have encouraged him to self-advocate and ask for help when he’s feeling overwhelmed. She could have affirmed his right to safety and empowered him to advocate for his needs.
This is what should have happened, and I haven’t given up on a world where this is the norm. To build it, we must rid ourselves of the behaviorist paradigm and start treating every child, no matter how severely disabled, as thinking beings deserving of autonomy and respect. Only then will autistic children be safe and free to live their lives as they want to, as everyone should have the right to do.
Juliette L. Dunn is a writer on topics relating to neurodiversity, social justice, and the media. She is autistic and resides in Oregon.