#StopCombating Me: Changing The Paradigm from Treatment to Education

Note: This blog is part of a flashblog for #StopCombatingMe, a petition to ask Congress to reform the Combating Autism Act or let it expire.  The petition itself is here and the flashblog information is here. The purpose of the petition and the flashblogs are to change the focus of autism policy from "combatting" a "disease" to integrating, and providing appropriate services to, people with a disability.  Instead of spending the majority of the budget on genetic research aimed at preventing autism, we aim for an approach that better serves the autistic people who already exist: more services and service research; more focus on access to education and careers; and coverage of adolescents and adults as well as young children.

I am no political expert.  All I know is that autism programs are currently based on a faulty paradigm that needs to change....

I want to see the paradigm of autism programs change from "treatment" to "education."

Currently, there are many educational programs aimed at making autistic children less disabled and better able to function in the world.  These include DIR/Floortime, ABA, the Early Start Denver Model, speech and language therapy, occupational therapy (for sensory, motor, and daily living skills), and more.  These programs often bill themselves as "treatments," and parents are encouraged to start as early as possible while their children's brains are most plastic.  Some practitioners even hold out the possibility that students may end up no longer fitting the criteria for an autism diagnosis--like the children in the much-hailed "optimal outcome" studies.  But if you look at what these programs actually do, they're not cures.  They're not even really "treatments" at all in any medical sense--for example, no medications or surgeries are involved.*  These programs just use highly-specific methods to teach skills.  For example, ABA is the use of behaviorist methods to teach skills that matter to parents and teachers.  All of these are simply glorified educational programs. 

So why don't we just admit these are educational programs and treat them that way?

Because when we don't, when we treat autism as a disease and these programs as a medical treatment, we open the door to abuse.  In this paradigm, no one asks what purpose autistic behaviors serve (because even self-injury has purposes), or whether indistinguishability is a worthwhile goal

So therapists order children to look them in the eye, even though it makes them feel uncomfortable and when they're looking, they can no longer understand what the therapist is saying.

Therapists call for "quiet hands," preventing autistic children from communicating and denying them the attention they need to focus on learning

Therapists take away children's communication outlets because children are "stimming" on them when in reality, they are babbling and playing with language. 

Therapists move children's bodies and without asking, put their hands over children's to make them perform desired tasks (called "hand over hand").  Then they punish children for "non-compliance" when they say "no."  These practices teach children that their bodies are not their own and erases their boundaries, leaving them vulnerable to physical and sexual abuse

Therapists prevent autistic children from engaging in their passionate interests so they can have more time to work on their weaknesses.  Instead of teaching parents to hone and value these interests as the gateway to educational and career success, therapists tell parents these are meaningless "stims" that should not be encouraged

Therapies designed to teach "social skills" teach how to be kind and follow "social rules," but not how to deal with real-world social interactions where other children are not kind and can get away with breaking the rules

Children exhaust themselves in a noisy, unpredictable, and isolating school environment, then come home to at least 20 more hours of drill on tasks they find difficult, exhausting, and perhaps pointless--and are denied the time to play, use their imaginations, and connect with their families.

Autistic adults who have experienced these kinds of therapies call them abusive. Not all individual therapists or programs are like this, of course.  But when we see programs through a "treatment" lens, as a sort of bitter medication autistic children must take to "get well," it doesn't even occur to us to ask whether we would subject a typically developing child--or ourselves--to the same treatment.

Yet we know enough about education to know that these are not good teaching methods.  We know from educating typically developing children that kids learn best when:
  • Their strengths and interests are acknowledged and valued.
  • They themselves are valued, and seen as real, full people, not just a brain in a vat or a collection of deficits to be remedied. They learn best in the context of relationship.
  • Teaching methods are adapted to their strengths, weaknesses, and interests.
  • They are able to play, use their imaginations, and draw connections between the learning material and their lives.
  • They are able to use their strengths to compensate for weaknesses, find ways to work around their weaknesses, develop strategies to make a task easier, and find a niche where they can excel.
  • They are seen as competent and able to learn.
Why not develop programs for autistic people that start from these basic teaching principles?

Because good teaching is desperately needed. 

Some say that autism is only a different way of being, not a disability.  But that's not what I see when I read autistic people's writing.  Blogs such as We Are Like Your Child are full of struggles with speaking and executive function and daily living skills and sensory overstimulation and controlled movement and more.  There are so many strong, smart autistic people who have limited ability to speak in real time; who have to draw themselves a flowchart to leave a room; who have difficulty controlling their movements and emotions.  And they describe this as exhausting, embarassing, and painful.

All these people point out that their lives would be easier if their work, school, and social environments were arranged in a more supportive manner.  For example, a workplace that expects employees to network in loud bars is disabling for employees who have difficulty understanding speech in a noisy background, or get overwhelmed by a crowded environment.  But that's true for any disability.  A disability is simply a mismatch between a person's capabilities and their environment.  Unlike with autism, calling dyslexia a disability is uncontroversial; yet most of us know it would not be disabling in a society without writing.

That said, the higher one's skill at performing a task, any task, the easier life is--the less time and energy you have to spend struggling with it, and the more you can focus on other things.  And the more secure you are, even if you lack or lose support.  This is true both for skills that come easily to neurotypical people and skills that come naturally to autistic people--being better at a a skill just makes life easier.

From what I've seen, autistic people want to make the world more comfortable to live in, but they also want to learn the skills they need to live in the world.  (Does this come as a surprise?  Treatment or cure may not be compatible with acceptance, but education is.  Education is the common ground that autistic people and neurotypical parents can agree on.  There may be real differences in how we see autism, but we all want autistic people to have the skills to function in the world). 

AutisticChick writes that she wants:

"education tailored to Disabled. Those like me. Teaching Disabled to care for themselves as well as they can, we can, and be as self-sufficient as possible, while not being afraid to ask for help. Not being ashamed of being just as imperfect as you, in noticeably different ways. Teaching Disabled to interact successfully with Nondisabled without asking them, us, to sacrifice our identity...
We need to improve our Disabled Education systems. Not just our supports (cue Autistics). Those are important. But so is personal growth. Yes. I support teaching Autistics and Disabled to learn self-care skills. I support teaching life skills. The program I'm in right now teaches those things. I want to learn them.

I've been told I shouldn't. I've been told I can't. I've been told I don't need to.

Our systems are not perfect. They need improvement. That's why I speak out. That's why I write."
Sparrow Rose Jones, in unpacking whether she would want a cure, says "there are aspects of my being that I like which may be the result of autism."  But, she says:
"I would like to not have dyspraxia — I don’t want the clumsiness, I don’t want the dysgraphia, I don’t want the difficulty in controlling my internal ‘thermostat,’ I don’t want the topographical agnosia.

I would like to not have prosopagnosia — face-blindness. It would be so nice to always be certain who I am speaking with. Recognizing people would be a real gift.

I would like to be able to follow and participate in a group discussion. I would like to be able to interact with people without regularly, unwittingly pissing them off. I would like to not live with constant stress and anxiety. I would like to be able to read the body language of others; I would like to have better control of my own body language. I would like to have a higher stress threshhold and a body that doesn’t respond to stress by turning off abilities: speech, vision, movement, hearing. I would like to not have meltdowns and shutdowns. I would like it if human contact – touch, smell, eye-gaze – were not so painfully difficult for me to endure.
I would like to be able to secure and maintain employment.

If this is a cure for autism, I want it."
In short, she wants not some generalized "cure," but to learn these specific skills.

For some of these skills, people have already developed ways to teach them--for example, occupational therapy targets clumsiness and dyspraxia; and the best social skills coaching is designed to teach how to interact with others without inadvertently "pissing them off."  Other impaired skills such as face recognition, which are affected by neurological problems, we have not yet found a way to teach.  Here, research could help in understanding why these problems exist, how the impaired skills could be learned, or if they can't, how a person can compensate.  We should be spending more research funding on this rather than on finding genetic causes.

As it is, schools and autism-specific programs are not effectively teaching autistic people the skills they need to be as self-sufficient as possible and achieve their life goals.  Meanwhile, our education programs often tell them (directly or indirectly) that they are worth less than others, that they are broken, and that the way they naturally think and feel and move is wrong.  If educational experiences come with this sort of dehumanization, are we not inadvertently teaching autistic people to avoid opportunities to learn new skills as too painful, and to expect adjustment only from others?

Indeed, the best resources for learning skills right now come from autistic people themselves.  Books like Living Independently on the Autism Spectrum by Lynne Soraya and Life and Love by Zosia Zaks.  Blogs like Real Social Skills and the Autistic Adult App Project.  Specific blog posts like Autistifying My Habitat.  Groups like TOTKO.  None of these people are teachers or service providers; they are simply ordinary people volunteering their hard-won knowledge.  All these findings come from personal experience, and given the variation on the spectrum, will help some people more than others.  In the absence of controlled, large-population research, it's not clear yet what advice will be useful to whom.  But researchers have yet to test their ideas and find out.

Because of the "treatment" paradigm that dominates the intervention world, these resources are outside of the education and intervention establishment.  We would consider it ridiculous for cancer patients to collaborate with doctors on designing their treatment plan.  Because we view autism from a similar mindset, we ignore the insights autistic people have and miss the opportunity to work with them to design and implement services and educational programs.

Autistic people can meaningfully shape autism "treatment" where cancer patients cannot meaningfully contribute to their treatment because what autism is, and how autistic people can function better in the world, are not brute biological/scientific facts that stay the same no matter what viewpoint you look at them from.  A tumor is a tumor no matter who is looking at it and what their viewpoint might be.  The same is not true of autism.  Aspirin reduces pain no matter what your philosophical beliefs about the nature or purpose of pain.  The same is not true of a social skills intervention.  Thus, a medical paradigm for autism intervention doesn't work.  But an educational one could. 

What insight could autistic people bring to education?  They know they live in a world where the majority of people think, feel, perceive, and act differently than they do.  They understand that autistic people are constantly forced to adapt, and typically developing people misunderstand autistic people at least as much as the reverse. They could design programs that teach autistic people to seek out people and environments that fit them well, change what aspects of their environments they can, and adapt to what they cannot change.  We might see autistic-designed intervention programs, perhaps along the lines Alyssa envisions.  An education paradigm would make all this possible. 

As Alyssa puts it, the difference between education and treatment is the difference "between learning to work with your brain as opposed to working to defeat your brain and pretend it is not wired the way it is."  The first one works.  The second one doesn't.
So let's stop combating, and start teaching.  As Ibby Grace says, "intensive education is realer than cure."

*Autistic children and adults are more likely than average to take medication.  However, the drugs do not treat autism itself but common co-occurring conditions, such as depression, anxiety, aggression, or ADHD.


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  2. Science lives in the land of tomorrow, while education is exceedingly practical, just a step away from parenting.. I'm glad I chose to major in education instead of science...and it was a true choice that I grappled with the whole time I was in college.. My background in education ended up being a lot more helpful to Ben, in the long run. My heroes are Speech Pathologists, Special Educators, and OT's. They carried me and Ben when I didn't have the strength, they showed me the way...the regular classroom teachers gave a lot, too. But the BEST was Miss Hunt...who was Dyslexic herself, and understood how hard school can be. Not that we didn't love Dr. Cannibus (not his real name, but it sounds a lot like that) and .Dr. St. Luke (Psychiatrist who was ADHD himself). In fact, looking back, we loved everyone with skin on that understood and helped.

  3. On the other side of that, medical issues are far more common among children with autism and other neurodevelopmental disorders. We are going next week to see a geneticist...to make sure Ben didn't inherit a genetic disease from his birth father. Tuberous Sclerosis and Neurofibromatosis might be indicated by skin anomalies...With millions pouring into research...epilepsy and other neurological problems will be found more frequently, and there may be a medication (other than for purely behavioral purposes) that would be helpful, life altering.

    Once again, I can't decide on a side and stick to it.

    1. "Once again, I can't decide on a side and stick to it."

      Maybe that's because there is no conflict here? I mean, you're right, good teachers are so directly helpful, and medical issues and epilepsy are more common than usual in autism. (And where is the epilepsy awareness?).

      The only real conflict I see is between research dedicated toward preventing autistic people from being born and research that helps those who are already here. The latter could be education, it could be medical, it could even be psychology stuff like what I'm learning to do. Medicine and psychology research have a longer time scale than education, as you said, so in the short term, maybe government priorities should shift toward education...especially if they're worried about having to spend a lot of money on supports in the future...

    2. I hope Ben is well and didn't inherit this genetic disease.

  4. I've got to close the genetic door opened 10 years ago for my own peace of mind. I doubt Ben has a recognized inherited disease, he seems very healthy; but it could change how complications would be treated if we knew. We talked with the geneticist, he will decide what testing to be done. The geneticist has a special interest in mitochondrial disease, so there's that. I let you know what he decides. The doctor said Ben's most recent psychological workup was the most helpful of all....I don't know what he meant by that, but it is intriguing. The geneticist seemed inordinately interested in Ben's decision to have children, or not...I wonder if he was concerned with "prevention". If so, that's pretty sad.

    Dr. Deevy Bishop had a blogpost that covered "If our goal is to develop better educational interventions, then we should be directing research funds into well-designed trials of cognitive and behavioural studies of learning, rather than fixating on neuroscience." http://deevybee.blogspot.co.uk/2014/01/what-is-educational-neuroscience.html

    1. I hope the testing goes well, and also that you and/or Ben communicated that whether Ben has kids is not the doctor's business!

      Thanks for the Dorothy Bishop post. I love it and completely agree. I haven't wanted to make that argument too strongly here, though, for fear that I'm just falling into the all-too-human tendency to see my own field as more valuable than others. ;)

  5. "Other kids easily get away with breaking the rules" is a massive understatement. I always felt "social skills" training would set Ben up as a target. Maybe it had something to do with having a father who was a bartender. We tended to be a bit jaded.

    1. Yes. You seem to have really good intuitions about these things! I imagine as a bartender his father sees the worst sides of people a lot...

      I've observed a little bit of two different kinds of social skills training: one-on-one speech and language therapy focused on conversational skills, and a structured play group with a variety of social/language-disabled kids. The former conveyed some really helpful basic information, I thought. The latter seemed like it could help with the most basic skills, like sharing toys or initiating a basic verbal exchange, but not so much with the more sophisticated social dynamics you get in late elementary or middle school. There's only so much you can tell from a few anecdotal experiences with a limited set of clinicians, of course...but explaining the complicated and not always fair social dynamics you get in real kid social groups is difficult and how do you teach it in a controlled situation? And explaining it verbally becomes difficult when kids have language delays or disabilities...

  6. "...More sophisticated social dynamics you get in late elementary or middle school. " Exactly. Ben was no longer echolalic ("t.v. talk") starting in grade 4. Up until then, his speech pathologists were phenomenal in teaching "language skillls" and "social niceties", turn taking, things like that.

    You are very good at capturing what I mean, and not what I say!!

    1. As I understand it, it was the same in our family. We worked with some phenomenal SLP's who were great at teaching turn taking and basic language and conversational skills. The SLP center had social learning groups, too, and these were focused on applying the same skills to interacting with other kids with the same social and language disabilities. Once you had mastered that, these groups weren't too helpful any more. From what I saw, they wouldn't have been much use for handling the complexities of middle school cliques, for example.