Autism Pseudoscience: A Guide for Physicians

by A4A Ontario
Print version: Physician’s Guide to autism pseudoscience

Introduction
When a parent tries to “cure” their autistic child with pseudoscience, they are physically and psychologically harming their child. Regardless of the parents’ intentions, that is the result.

We are reaching out to you, as physicians, to help protect autistic children. You are often one of the first points of contact for families in crisis. You have influence and can take action to protect the health and safety of children.

In this paper, we discuss:

  1.  the impact of autism pseudoscience;
  2. how to detect it;
  3. how you can respond in your practice; and
  4. other actions to protect children.

The Lifelong Impact of Autism Pseudoscience
Autism pseudoscience is very common — and it is big business. Parents have spent millions on unproven autism treatments such as gene therapy, hyperbaric oxygen therapy, chelation for autism, MMS, DAN/MAPS diets and off-label CBD and medical marijuana. The supplement industry promotes hundreds of supplements “for autism” and some providers sell these out of their offices, taking a commission from manufacturers. Other times, parents buy phony products online or may travel as medical tourists for so-called treatments.

Let’s be clear: No autistic child or adult wants to undergo a phony autism treatment. These treatments are frightening, painful and emotionally devastating. They are also often physically risky or harmful. Some children have died from treatments such as MMS and chelation-for-autism.

At A4A, some of us are survivors of these treatment scams, enduring years of our parents’ senseless rituals around food, “biomedicine,” drugs and other bogus treatments to supposedly cure us –of being ourselves.

Far from being positive, the results were: PTSD; fear of medical providers; eating disorders; low self-esteem; inability to trust; identity issues; broken family relationships and more. Some of us had to walk on eggshells at home for fear of more painful treatments.

When parents choose pseudoscience, it also often replaces crucial, legitimate therapy for their kids. For example, a psychotherapist recently told A4A that her client’s family discontinued essential therapy services because their alternative to psychotherapy was to take their son chelation therapy.

Survivors’ lived experiences show that adults who spoke up against a parent’s use of autism pseudoscience sent an important message to the child that this is not okay. By contrast, when adults/providers were silent about it, survivors received the message that other adults think this is fine and no one will help me.

If you encounter families who are using autism pseudoscience, it is important to say something. There are also other steps you can take to intervene.

Recognizing Autism Pseudoscience
Identifying the Terminology. Autism pseudoscience sellers aren’t allowed to use the word cure in their marketing materials, so they’ve developed euphemisms for the cure promise. Parents pick up on these terms. Be aware if parents are using terms like:

  • “recovery from autism”
  • “detoxification”
  • “addressing the core symptoms of autism”
  • “biomedical approach”
  • “parasite removal”
  • “methylation”
  • “healing protocol”
  • “restoring neuroimmune levels”

Other Signs. The Westminster Commission on Autism has authored a report on autism pseudoscience that outlines the problem and identifies some signs of a practitioner selling pseudoscience, including:

  • Relying on anecdotal evidence/testimonials;
  • Dismissing scientific views on the condition;
  • Offering one cure for a broad range of conditions;
  • Inventing new conditions;
  • Telling patients they “have to believe” for it to work;
  • The product is expensive and therapist gets financial gain from each product sold; and
  • The therapy can be administered by someone with no medical qualifications.

Off-label use of prescription products is another warning sign.

Parents may:

  • present with a completely healthy child, but insist their child needs medicine;
  • attribute developmentally-normal behaviours (such as excitement, fears, rebellion or night waking) to an imagined illness;
  • perceive autism itself as an illness or a toxin;
  • have a pattern of provider-shopping;
  • claim their child has other conditions such as “PANDAS” or “chronic Lyme”;
  • refer to their child’s personality traits/interests as “behaviours”;
  • claim that there is a cure for autism.

The child may:

  • seem afraid to express/speak;
  • be unwilling to contradict the parent;
  • repeat the same jargon as the parent;
  • not have his or her AAC device available because the parent did not bring it;
  • show a trauma response when the topic of the treatment is brought up.

Taking Action in the Clinical Setting
The two types of consent. When you meet an adult patient using pseudoscience to treat their own conditions, you may decide in that it is reasonable to take a caveat emptor approach; that the patient has decision-making power, even when it may not appear to be in the patient’s best interest. That is because the patient is consenting to their own treatment.

With autism pseudoscience, this same approach is not appropriate –because the child is the patient and the child cannot give informed consent. Parents are proxy-consenting for their children, who do not want these treatments.

As a primary provider, you have an opportunity to intervene. Here are some strategies:

Define the patient
Make it clear at appointments that you value and acknowledge the needs of your patient.

  • Speak directly to your patient by name;
  • If your patient is non-speaking, ask the parents to bring along your patient’s AAC communication so he or she can communicate directly;
  • Always assume your patient is listening. Even if they are missing some of the details, they are perceiving the tone around these subjects;
  • Redirect from talking about your patient. Example: if a parent complains to you about their child having trouble sleeping, turn and ask your patient, “How are you feeling at bedtime these days?”;
  • If a parent mentions a pseudoscience treatment, let them know about any potential harm associated with the treatment and that you’re concerned about its impact on your patient.

Stay connected

  • Keep track of any missed appointments and ensure that your patient sees you regularly. Children whose families have dropped out of the system are more vulnerable to medical abuse.
  • Consider referring your patient to an expert such as a speech language pathologist or psychotherapist who can monitor and forward notes to you.
  • Stay calm about autism. Many parents report that they were frightened when providers talked about a “narrow window for early intervention” and felt like they had to try everything on their autistic child (including pseudoscience) before it was too late.
  • People make bad decisions when they panic. If you sense that a parent is panicking, provide resources on autism acceptance and autism throughout the life span. Provide written information and links. Don’t let them walk away empty-handed.
  • Use the EGRIP strategy. This article by Gleb Tsipursky for Scientific American is a great starting point in applying the EGRIP strategy in practice.

Reporting
There is Canadian precedent for adults to step forward and protect the health rights of children. Medical neglect is included in reporting requirements for suspected child abuse. There are also mandatory reporting requirements of teachers and providers who become aware that a child is going to be sent abroad to undergo procedures that are illegal in Canada, for example, “gene therapy” for autism.

If you are unsure whether or how to report suspected medical abuse, ask a social worker or other professional at your clinic. If you do not know who to consult, contact us and we can connect you.

The Situation in Ontario
Autism pseudoscience is prevalent across Ontario. We have identified 14 Ontario clinics promising to treat autism through a range of protocols including chelation; vitamin injections; off-label prescription drugs such as long-term antibiotics; bleach enemas (MMS Miracle Solution); chemical castration; herbal and vitamin supplements; hyperbaric oxygen tanks; severely restrictive diets; and other protocols.

In Ontario, there are currently no Provincial regulatory measures to stop practitioners from marketing pseudoscience. A group of MDs in Ontario is working independently for better regulation. They are seeking to collaborate with the federal government on a report addressing gaps in regulation and enforcement, to establish a clear path for policy around health claims for CAM and autism in Canada.

There is precedent for making these changes. In the UK, the Westminster Commission on Autism has written a comprehensive report that identifies such gaps in their current regulation and are working to address this problem so that complaints no longer fall through the cracks. The UK working group are helping to ensure that its government is more proactive in regulation and enforcement.

We hope to see the same in Canada in 2019.

Contact Us
Thank you for reading this report and for caring about the health and safety of autistic patients! Please follow us on Facebook or Twitter @a4aontario to keep informed. If you would like any other information, please send us an email at a4aontario@gmail.com.

 

September 17 is the First International Day of the Stim!

A while back, some of us at A4A decided to create a day to celebrate stimming. Welcome to the first International Day of the Stim!

What is Stimming?
Stimming is a term for repetitive body movements or moving/touching an object in a way that is stimulating to various parts of the nervous system. Although it is stimulating, it also often has a rhythmic, calming effect that helps neurodivergent people to relax.

Stimming isn’t something that only we do: it’s common for many neurotyopical people as well (think of tapping a pencil or twirling hair). The difference is autistics may stim more or in different ways. In fact, stimming is an incredible resource to help us manage sensory input as well as excitement or stress.

Our stims are something that should be respected as an essential tool for emotional wellness. Unfortunately, that doesn’t always happen.

“Quiet Hands”
Despite all that we know about the usefulness of stimming, it is still being repressed by ABA therapists. Stimming is the perfect example of when some therapists take an action that most everybody does – and say it’s not okay when an autistic person does it.

Some therapists or group home workers will grab a person’s hands to stop them from flapping or even strap them down. Some will tell parents or support workers to say “Quiet Hands” to a child whenever they flap hands. The effect of this is devastating, because flapping hands is a form of communication. To “extinguish” flapping is basically the equivalent of yelling “SHUT UP!” in a child’s face.

We all have the right to stim. We have the right to flap. We have the right to our bodily autonomy.  Stims help us relax, they make us feel better and they don’t hurt anybody. It’s time to stop the practice of “extinguishing” stims. It’s time for everyone to understand and embrace the positive role stims have in our lives.

Events on This Day
In London, Ontario, London Autistics Standing Together (LAST) is meeting up today at William’s for coffee and sharing stims!

In Winnipeg, Canadian Autistics United (CAU) is having a meetup that is focused on celebrating stims (Check their Facebook page for information.)

CAU Vancouver is also celebrating. CAU Vancouver was part of a group that developed a Stim Toy Lending Library through the Simon Fraser University library system. This awesome little library is also mobile for events in the community!

We are using social media to have a global conversation about everything stim. To learn more, visit the official blog for the International Day of the Stim or our Event Page. You can also follow us on Twitter @a4aontario to add your insights, photos and comments #stimday.

Wishing everyone in our community a safe and stimmy day!

 

 

Why we oppose ABA in any form

by Autistics for Autistics Ontario

Autistics for Autistics opposes ABA in any form, because ABA is founded on a dehumanizing approach to autistic people. Applied Behaviour Analytics (ABA)–an autism therapy based on the works of BF Skinner and O Ivar Lovaas–is predicated on a medical model of autism (autism as a set of behaviours to “fix”) and is a holdover from the era of residential institutions. ABA stands in stark contrast to current understandings of autism based on the social model of disability. Under the social model of disability, the community is best served through inclusive services and accessible design.

In this piece, we give 5 reasons not to support ABA, offer historical background into ABA and discuss accessible design and other alternatives to ABA.

Reason 1: Autistics who have undergone ABA are more likely to suffer from PTSD. The risk of suicidality is also significantly higher for ABA participants.
Research shows that ABA is overwhelmingly traumatic and has a lifelong effect. One study linked increased exposure to ABA with increasing severity of PTSD. There is also a correlation between ABA and suicidality according to a study by the International Society for Autism Research.

Behaviour is communication –but instead of listening to the communication, ABA providers silence their students with aversive and “rewards”. For example, when an autistic toddler flaps her hands, she is saying something to the adults around her (that she is excited or upset, for example). An ABA provider will say “quiet hands” or physically hold down the child’s hands to discourage this communication. Quiet Hands and other aversives severely impact autistics’ expressive abilities and have a lifelong effect.

Reason 2: ABA training makes children vulnerable to abuse throughout their lifetime.
A child is not allowed to say “no” in ABA. ABA teaches compliance at any cost: children are told over and over to ignore their gut feelings and abandon their sense of personal space. ABA providers punish children who say no, using aversives such as taking away something the child loves (in the “nice” ABA) or physical aversives like electroshock (in other forms of ABA.)

Adults may see it as “success” that a child no longer expresses views or preferences, but in fact it is a devastating loss. Punishing autistic children for saying no has long-lasting psychological effects and can impact future judgement and relationships, making us particularly vulnerable to sexual and other physical abuse throughout our lives.

Reason 3: Young children who undergo IBI or ABA are denied a normal childhood.
Most ABA/IBI centres keep toddlers and preschoolers in 25-40 hours a week of therapy at a time in their lives when they should be connecting with their families, playing outside and getting to know their peers. It is the ultimate segregation and, in effect, makes autistic preschoolers go to work every day rather than exploring their natural development as other children can.

ABA pathologizes normal childhood milestones such as expressing anger, taking risks/exploring or having preferences. It creates an impossible standard for compliance. Ironically, autistic children are penalized for exhibiting some of the most typical of childhood behaviours and are held to an impossible standard compared to their peers.

Reason 4: Autistic people do not like or want ABA. 
Really, this should be the only reason we need to give. The people being “served” by the therapy don’t want it and indeed report trauma from it. Autistics overwhelmingly report that their experience of ABA is negative. In a survey of 11,000+ people, 98% of autistics opposed ABA. These findings are standard, whenever a survey or study is done on autistic views on ABA.

Autistics deserve to feel comfortable, safe and have dignity at every age. Unfortunately, our province still funds programs that force autistic people to receive a century-old “treatment” that they do not want.

Reason 5: There are better ways than ABA — but ABA organizations lobby for dominance.
There are many wonderful accommodations and services that are completely left out of the funding models in places like Ontario. In fact, Ontario’s Autism Plan only funds ABA. The results are devastating.

Read our Human Rights Report to learn more about the impact of this decision and read our report on the Ontario policy situation to learn how the ABA lobby shut out useful services in Ontario.

Background
History and philosophy of ABA

ABA, also know as autistic conversion therapy, is a form of Radical Behaviourism, which has its roots in the thinking of BF Skinner, who studied animal subjects in the 1930s and 1940s, using electric shocks and other aversives to control animal behaviour. ABA’s founder, O. Ivor Lovaas, did not understand autism and the myths he perpetuated still power the ABA movement.

Writing about his autistic patients, Lovaas stated: “You have a person in the physical sense –they have hair, a nose, a mouth, but they are not people in the psychological sense. One way to look at the job [of autism therapy] is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”

Sadly, in ABA literature we still often still see the idea that autism is a deviation to be fixed and a “real” child constructed through the therapy.

Countering this myth, autistic self-advocate Maxfield Sparrow writes: “Autism is not a shell surrounding a ‘normal’ child. …Autism in your child’s DNA, brain, sensory organs. Autism is so much a part of who your child is that many of us Autistic adults who are able to communicate, and who choose to talk about being Autistic, will tell you that it hurts us to hear or read phrases like ‘fight autism,’ because it feels like people want to fight us.”

Lovaas was also the founder of a brutal gay conversion program, which falsely claimed to stop young people from being gay. Gay conversion therapy is now illegal for children under age 18 in Ontario because it violates human rights. It has also been banned in many jurisdictions for adults because it violates the Charter. Similar to its founder’s gay conversion therapy method, ABA likewise attempts to convert autistics towards the goal of appearing “indistinguishable from peers” –at any cost.

The Practice of ABA
Through ABA’s early interventions, autistic children are exposed to hundreds of repetitive discrete trials, where they are forced to perform simple tasks over and over to earn rewards or –if they don’t perform– they are given aversives, which range from electric shocks and other physical punishment to psychological torture such as being isolated, having beloved objects taken away or providers refusing to address their communicated needs.

One example of physical aversives in ABA at a residential/day centre is the Judge Rotenberg Center in Massachusetts, where autistic and other disabled residents are deprived of food and given electric shocks to correct “behaviour”. While the Center has been condemned for its practices by the United Nations among others, note that none of the major professional organizations of ABA providers have condemned the actions of the Center. (For updates on the campaign to stop the use of shock aversives, visit the ADAPT website).

In Ontario, children as young as two years old are put into programs that consist of 6-8-hours per day of repetitive drills at a therapy centre – segregated from their neurotypical peers (who, unlike them, get to engage in free play and other developmentally appropriate activities.) At the end of the child’s day, ABA drills typically continue in the home because parents are told to continue the program there, essentially playing the role of therapist rather than parent. This can quickly erode trust and compromise the parent-child relationship.

Forbes science writer Emily Wilmingham points out: “With ABA, the burden is on the child to somehow understand and modify behavior in situations that they often aren’t even old enough to intellectualize.” With other approaches, “the onus is on the [parents and teachers] to understand and communicate with their child, rather than to try to ‘fix’ them.”

Why ABA doesn’t work
ABA’s impossible expectation (for the child to act the same as neurotypical peers) is a setup for failure –and failure is too often blamed on the child. Parents who start out with a standard ABA program may then be encouraged to increase the intensity of aversives; an example would be a parent who escalates the situation and engages in practices that are damaging to the child.

Children who react naturally to the (highly unnatural) expectations and protocols of ABA are seen as “non-compliant”, resistant and burdensome to practitioners and even to some families. And then the situation escalates.

As a former ABA provider writes: “The overall concept of compliance training is an integral part of many ABA programs. The rule is, once you give a command as an ABA Therapist, you must follow through with it no matter what. If a child tries to cry or escape or engage in any other ‘behaviors,'” the therapist can’t intervene to help or comfort the child.

Even if the ends could justify the means, ABA doesn’t appear to actually “work”. Research reviews show that ABA studies have been historically plagued by poor methodology. As neuroscientist Laurent Mottron of the University of Montreal writes in his study, ABA research’s “efficacy has been called into question in the last decade due to poor-quality data, small effects, low cost-efficiency, and the evolution of ethical and societal standards.”

Unsurprisingly, newer research in the neuroscience field is incompatible with the Behaviourist approach.

The Politics of ABA
There are alternatives to ABA; in fact, many jurisdictions outside of Ontario (such as the UK) have stopped funding ABA in favour of progressive approaches such as Accessible Design. Other jurisdictions provide a range of service options, not just ABA.

Unfortunately, after the Ontario Association for Behaviour Analysis hired lobbyists targeting eight Ministries at Queen’s Park in 2017, the government unveiled a $500 million government autism plan (Ontario Autism Program) where only ABA is funded, only ABA is allowed in schools –and therapists who receive public funding (including SLPs and OTs) now must become ABA-certified. Ontario’s entire autism programming budget has thus been earmarked for ABA.

Some parent-led organizations also have professional relationships with the ABA industry. Autism Speaks Canada, for example, collaborates on an online documentary series which features children (too young to consent to having their supposed “social deficits” exploited onscreen) to promote the work of a Canadian ABA therapist. (Please Contact us if you would like to be involve in our campaign around this).

Why is ABA the mandate in Ontario, since so many jurisdictions have abandoned it and autistics consistently voice against it? Partly it is because ABA is the only provincially-funded therapy (due to lobbying), so some parents and teachers believe that it is better than nothing. From talking to parents, we have also learned that some were frightened into thinking ABA was the only way to help their child.

Typically, providers tell parents ABA is their “only hope” and “the only evidence-based early intervention.” The term early intervention simultaneously lends providers a veneer of having medical credentials, as well as creating a sense of panic that causes parents to make radical decisions about their child’s care in haste.

ABA versus Acceptance
Some parents also support ABA for a more disturbing reason: the idea that their autistic child is not the child they wanted, and the desire to transform their autistic child into one that mimics a neurotypical child. An extreme example of this is the popular blogger who recently admitted to forcing her autistic child to attend a Sesame Street performance by dragging him through hallways and sitting on him, even as he screamed to leave.

Whether the child is autistic or neurotypical, every parent has to eventually accept that they are not getting the mini-me they may have dreamed of. The later this knowledge comes, the more damage is done. Many of us have felt this rejection from our parents and it doesn’t get any easier. No matter the therapies, we cannot change who we are. So when our parents perceive us as perpetually not good enough, not NT enough, it has a profound effect.

As Aaden Friday writes in their essay When You’re Autistic, Abuse is Considered Love: “I was told that I was loved every day, and yet I sincerely believed there were parts of me that I needed to destroy in order to be worthy of that love — and so I tried, and failed, and grew up traumatized, without ever understanding what healthy love looks like.”

Autistic acceptance is crucial to ensuring a child gets the supports they need. ABA’s focus on “behaviour” often makes it confusing for parents to recognize and accept their child’s needs, because much of the child’s communication efforts are mislabeled as “negative behaviours” to be punished rather than communication to be responded to. In addition to being cruel, this approach also stymies the problem-solving process and prevents positive accommodations and solutions from being implemented.

There is no “good ABA”
Some of us have been asked if we support “the good ABA”. But from the perspective of neurodiversity, there is no good ABA, because ABA fundamentally seeks to invalidate the authentic selfhood of autistic children. ABA approaches autistic children as a series of behaviours and deficits to fix and retrain, rather than as, well… people.

For these and other reasons above, we don’t see that ABA can be redeemed or re-branded: it should just be relegated to the dustbin of failed psychiatric approaches. And the sooner the better. It is heartbreaking to think of the many useful services and accommodations that have been neglected due to our province’s over-focus on ABA.

But it’s not too late to change!

Alternatives to ABA
What are the positive alternatives to the negative ABA cycle we’ve been experiencing in our province? Here is a brief look.

Accessible Design. As with other conditions or disability, accommodations should be central to any home, workplace, school or public space. The concept of accessible or universal design is that accessibility is “a fundamental condition of good design.

Unfortunately, according to the Ontario Human Rights Commission’s recent report, special education in Ontario essentially hasn’t changed in more than 30 years. Currently in Ontario, accessibility is left to the discretion of individual teachers, employers or others.  The Province should consult with autistics and teachers and undertake an Accessible Design study for making classrooms across the province accessible and friendly for autistic learners.

The principles of accessible/universal design can also be applied in the workplace and in public spaces. We are seeing promising changes from the IT sector in making job interviews and work spaces and arrangements accessible for autistic employees. Government should consult with autistics and employers about their best practices to learn and implement them in a range of areas.

At present, autistics are not consulted by the Ontario Government when developing the programs that impact us. Autistic youth and adults should be consulted when policy is made. The Province can follow the disability rights approach, where the clients are consulted on the accommodations and services needed. This approach can be used to  look at best practices across the board.

Autistics as Experts. Currently, the Province’s approach to autism services has been determined by lobbying groups often led by parents. This is unfortunate, because most parents are not autistic, they are not experts and they may know very little about what truly works for autistics. And as hard as this may be to hear, their goals do not automatically align with the goals of their children.

Policymakers: learn what your autistic constituents need –from us, not our parents. Also, look to other jurisdictions that take a progressive approach to disability and/or autism. Our province’s services need to transform into a fair, helpful system and away from the wrong-headed and bloated service model we currently suffer under.

Moving Forward
Autonomy in communication, work, housing independence, comfort, freedom and dignity are important to us all – yet none of these appear on any Individualized List of Goals and Objectives for ABA Services. In fact, Ontario’s current Autism Plan does not even mention AAC, employment, housing, services for adults or a host of other community priorities. Only ABA is funded.

If Ontario is to become a province that embraces equality, policymakers need to move sharply away from the approach of making parents and ABA providers the sole stakeholders and instead focus on the experiences and input of autistics and other disabled Ontarians.

ABA tried to teach us never to say no. But we are going to remain noncompliant, stand with our allies and say NO to ABA in this province. Because when you say no to ABA, you discover what you can say yes to. It’s time for our province to find out, too.

Take Action
If you are located in Ontario and would like to get involved with A4A, please Contact us or find us on Facebook (A4A Ontario) or Twitter @a4aontario.

If you are outside Ontario, we have a list of organizations working for better ways than ABA, you can Contact us by email to learn more.