Inclusion and Acceptance are the Most Effective Autism “Therapies”
The constant need to label and pathologize everything Autistic people do is part of what makes people see them and treat them as less than human, and this is a dangerous precedent to set.
I remember when my son was first diagnosed, and a old friend came to visit. I had snacks laid out for my son as I usually did, and he took a cracker, pepper slice, or carrot stick here and there. She said “he eats really well”. I said “Yes, his therapists say he likes to ‘graze’”. She looked at me and said, “Graze? Wow, they really like to give a crazy word to everything he does, don’t they? My niece does the same and no one has ever thought to compare her to a cow!”
That comment really kicked me in the head — gratefully — and woke me up from the therapist spell I’d been under for a few months. In trying to do my best to care for my son, I’d listened to these so-called “experts” over my own intuition and intelligence. And let them define him and his actions in these gross, bizarre, animalistic terms. In psychology, it’s called “pathologizing” — when you make everything a person with a specific diagnosis does seem like a dysfunctional act that is a symptom of their diagnosis, even if it is something that many people of the same age are doing.
The majority of my experience with therapists and special education teachers regarding my son from age 2–6 was them saying, “See! He is Autistic. This is what Autistics do; They “insert pathologized word here (graze, stim, etc.)” Most children “eat”, my child “grazed”. Most children “act silly”, my child “stimmed”. Most children “get upset”, my child “had a meltdown”. Most children “misbehave”, my child “has behavioral disabilities”. It was a constant effort, on their part, to show me how “different” and “damaged” my child was; to make sure I was fully aware of his “otherness”. To make sure I bought into their version of his Autism enough to then buy into their (very expensive) services to treat it.
The Autism industry is making TONS of money convincing parents their children are hopeless in order to warrant as much therapy as the parents or their insurance companies can afford. We lived in Montreal, Boston and then NYC with my son when he was first diagnosed. In all 3 places, speech and occupational therapists charge an average of $300/hour, won’t work with you if you don’t sign up for at least 2 hours per week, and still have 2 month to 2 year wait lists. Most “Autism Research” agencies take millions in donations to either pay their staff or research “cures” for what they’ve labeled a “nightmare” condition.
If even a quarter of the money collected for Autism Research and/or paid by parents into Autism “Therapies” were instead put into educating the public that Autistic people are just humans with some differences, or into creating inclusion programs in schools, workplaces, and society as a whole, Autistic people and their families would benefit a great deal more.
We were told (as are most parents of Autistic kids these days) when my son was 3 that at least 40 hours of ABA therapy a week (at $150/hour plus a $1000 oversight fee per month) was the only way to help him. So we looked into it, received a few references from a variety of sources, and interviewed 4 companies, none of whom were very impressive. However, one ABA therapist who was very highly recommended, was especially awful. I would later come to realize she was not unique in her awfulness — most therapists and teachers that came after her were quite similar.
The therapist’s sitter was sick, so she brought along her 3yr old son. Her son wasn’t very happy to go into a stranger’s apartment (understandable, but, had it been us, my son would have “had trouble with transitions”). Her son threw a bit of a tantrum at the door which lasted about 10 minutes. I tried to help with toys and pleasant words. When she finally wrangled him into the apartment, he was running around our living room, jumping on and off furniture. She turned her attention to my son, who was sitting quietly, playing with his toys, wondering why these people were in our home. Without even introducing herself or acknowledging him, she sat my son in a chair, facing her, and held an apple in front of his nose. “What is this?” she yelled at him. My son wasn’t speaking at all yet, so he didn’t answer but squirmed a bit in the chair and complained with a whine to the invasion of his privacy. She forcefully pushed his arms down and held them there, causing him to squirm and protest more, while repeating “What is this?” regarding the apple she had now put on the table.
She did this with a few more items, and I finally said “He’s having trouble with anxiety around speaking, so how is this supposed to be helping him?” She said something about how he had to learn how to behave if we expected to get him into a decent preschool, and how I needed to be stricter with him to get him there, etc. I said “Well, what about your son? He’s obviously having trouble with his behavior. Isn’t that just normal 3-year old behavior?” She shot back, “My son doesn’t have an Autism diagnosis, so he doesn’t need to behave himself.”
I thought of many things I should have said at that moment, but instead, I walked to the front door of my apartment, opened it up, and said “Thanks very much for coming. Goodbye now.” I had to repeat it several times as she was obviously not used to being asked to leave. She kept arguing as she gathered her things and her son about how I was going to destroy my son’s chances at a proper life.
I just kept repeating “Thanks very much for coming. Goodbye now” because I knew if I allowed myself to speak just one other word, it would unleash an uncontrollable torrent of obscenities. But this was not the first time that an agency which claimed to “help” Autistics had told me I was going to “cause irreparable harm” to my child by not paying them ridiculous amounts of money to work with him. So I gratefully started to recognize that behavior as a frequently-used sales technique.
We didn’t end up hiring any private ABA therapists, but when we started getting services at home from the Department of Education, they sent us either ABA therapists or special education teachers who had some experience with (but were not certified in) ABA, since this is what most agencies/schools/insurance policies think is the only “treatment” for Autism. The 2 people they sent were slightly kinder than the private therapist we’d interviewed, so we gave it a go. He liked them initially but would eventually cry uncontrollably during the sessions, where they insisted he sit up straight, be still, look them in the eye, etc. A few months later, we asked again for new therapists/teachers and were given yet another 2 ABA therapists. They would repeat each question 10 times per session, resulting in extreme frustration for my son, and even if he answered a question correctly but was not sitting still and making eye contact while he did it, he was marked “wrong”. Or, if they asked “What’s your favorite food?” and he said “sushi” instead of “pizza” (which was the answer they’d taught him months earlier), he was marked wrong for saying a legitimate answer that wasn’t their taught answers.
I kept asking how this was an effective method of instruction for a child whose main issues were anxiety and difficulty with regulation (which are the basis of most Autistic problems). Also, we had enrolled him in a lovely nearby Family Preschool that had a wonderful, flexible, kind director, and he was doing really well there. So I kept asking, “Why is this necessary? Is it helping?” In every instance, with all of the many teachers we went through, any questions of the method made them only try harder to point out to me how everything he did was “Autistic” and therefore “bad”. And of course they also emphasized how, as his mother, nothing I observed was valid.
They would write reports using adjectives the industry uses on Autistic people (cold, indifferent, unfriendly), not because it was true, but because it’s how they described all Autistic people. I would say “He’s very friendly; it’s just hard to make friends when you have trouble speaking and need to keep moving in order to regulate”. And they would correct me, “He’s not friendly if he can’t speak”. So I’d say “What about deaf people who can’t speak? Are they unfriendly? If I visit a foreign country where I don’t speak the language — does that make me unfriendly? He walks up to children. Smiles at them. Tries to get them to play with balls or to chase him. No, he’s not talking, but how is that unfriendly?” No answers, just more smug “delusional mother” comments. One actually said to me “You feed him so of course he is friendly towards you!”, as if my son was some type of wild animal that only responded to the carer who gave him food.
I would take videos of my son, interacting with children in the park/playgrounds/at preschool, and even then, teachers would barely believe the videos. “I haven’t seen it for myself” one teacher said after I complained yet again that she’d put on her report that he “wasn’t very social” when her schedule had prohibited her from accompanying him to preschool or swim class or the playground, where she would have observed his interactions for herself. She decided it was ok to judge him by his reaction to her sessions. If he didn’t like being told to sit still and make eye contact for two hours at a time, then he must be “anti-social”.
A year later, the teachers still had him identifying the same 50 objects they’d be working on a year earlier,with the majority of their time focused on keeping him quiet, still and making eye contact. With me, I let him jump on a trampoline as we worked, didn’t care if he hummed and looked away, as long as he answered me. In that setting, he was reading beginner books out loud and answering basic questions like “Who is the main character?”, putting sentences together with word magnets, spelling words with letter magnets, and doing basic math.
My son became more and more frustrated with the teachers’ repetition (a key component of ABA) and started to get upset in sessions more often. I would tell the teachers what I was working on with him and they either told me I was “seeing what I wanted to see” or they would tell me that I was “hurting” him by expecting too much of him.
I asked the agency to send me different teachers. I would ask many question in the interviews about whether they thought academics would “hurt him”. A small few would agree he shouldn’t be underestimated, but then they would go ahead and blow bubbles and/or identify colors with him endlessly for the next few weeks. We went through about 20 teachers that year, trying desperately to find some that believed he could do basic, age-appropriate academics.
Luckily, one of the teachers was honest enough to say to me “I’m happy to do whatever curriculum you want me to do but there’s no way I’m spending any extra time putting together lessons other than the ABA ones the agency has given us. What teacher is going to spend extra time teaching your kid grade level work when they can easily blow bubbles and recite the alphabet with some other kid for the same price?” So, I began to put together a curriculum for the teachers to follow and finally found 2 teachers who agreed to follow my lesson plans and believed in his abilities (to be fair, one of these 2 teachers is an ABA therapist but is first and foremost a decent human being who wants to do what works best for our son, so we don’t do ABA therapy, and she is ok with that.)
I still lay out his lessons every week, and his progress has been wonderful. He still has anxiety and he still struggles to get words out. But he reads, he’s learning to type, and to speak using an AAC app, he swims, likes to run track, takes art and science classes with other homeschoolers, loves his teachers, and has 2 friends. He is currently learning how to play soccer and is a pro at shooting baskets. He is a happy, smart 8 year old boy who has some issues. Not a “nightmare”. Not a diagnosis. Not a pathology. Just an 8 year old boy.
People say “Maybe your child is different than most”. No. I have also worked to build inclusion classes in public schools, I have taught yoga in public schools with inclusion classrooms, and I have worked with other families with nonspeaking Autistic children. I have seen very similar trends there as well. The children have much more ability than they are credited with by therapists and teachers. Parents’s input is denied and often mocked, if they dare to speak up at all.
I have also spoken with formerly-nonspeaking or still-nonspeaking Autistic adults (online and in person). They confirm a lot of what I have been observing, saying they also had their basic intelligence and their basic humanity denied for years before they finally learned to read, spell and type. And often people will even claim they are not typing, reading and writing — as they are doing it — because people often want to be right more than they want to be inclusive.
I’ve been on boards at museums and theaters where they are setting up separate programs for Autistics. I‘ve seen community groups and churches put together separate events and church services for Autistics and their families. The intentions are good in most of these ventures, but the end outcome is segregation and isolation of Autistics which usually leads to lowered expectations and exclusion from a future in the community.
For example — My son took swimming lessons at a very expensive community center in Manhattan for 2 years. Since they had an “extensive special needs program”, they wouldn’t even think of letting him take a typical class. In the “special needs swim” class, there was a different instructor every week, and they didn’t really push him to learn to swim. He never went underwater and didn’t swim on his own. We were told he “couldn’t”. He started to cry when we’d get his swim bag out of the closet. We were told we were “pushing him too hard”. We moved to Queens 4 months ago and enrolled him in a nearby swim class. The center is small and they have no “special needs swim”, so he is in a typical class. In less than 3 months, he was swimming underwater and swimming without floaties. He and his coach (the same coach each week) have a great relationship, and he loves to go swimming again.
I always push for inclusion. The main accommodation that needs to be made is an adjustment in people’s attitudes, and that won’t happen if they’re never exposed to anyone with differences. Let Autistic people be a part of society. Otherwise their skills are denied and their existence diminished. If a church/community leader can’t say, “We need to accept these people, even if that means they aren’t sitting perfectly still all the time or always quiet”, they shouldn’t be church or community leaders. Segregation of Autistic people is not a solution. It‘s very harmful. But I’m often told, “This is what the parents want because they’re sick of dealing with judgmental people”.
As parents of Autistic kids, our main job should be to stop people from pathologizing our children. We need to insist they be included in the world. We need to insist their differences are different. And nothing else. Not harmful, not horrible. Just different. If we don’t do this, then NO ONE WILL. And we will leave our children vulnerable to people looking to make money “converting” them to “normal”, and we will say to society that it is ok to ostracize our kids for being themselves.
The de-humanization of Autistic people is what leads to them being permanently segregated from the rest of society, leads them to having their educations ignored, leads to their low self-esteem, leads to them being bullied, mistreated, and abused for their differences, and even leads juries to think it is ok if a parent kills them because they are “such a burden”.
With so much focus on how they are NOT like other children, then “of course” you can argue that no teacher should be expected to be slightly flexible and compassionate enough to include them in classes. “Of course” you can then argue that their parents are so “very burdened” they needed to kill them.
Despite media portrayal, Autistic people are NOT missing puzzle pieces; they are NOT “anti-social” and they certainly do not “lack empathy”. They’re just human beings who are left out of every aspect of society and then pathologized and labeled by society, in order to justify society’s horrible behavior towards them. This needs to end.