Social Policy in Ontario

Lerner, 18, who has autism, received three hours a day of applied behaviour analysis (ABA) therapy for almost two years before he started kindergarten. And he says it set him up for success in both school and life.

Fear of losing access to this rewards-based behaviour modification therapy — considered the “gold standard” by most health-care professionals — has fuelled parent outrage in the wake of recent funding changes to Ontario’s autism program.

Numerous well-designed, peer-reviewed studies over the past three decades have shown ABA therapy to be the most effective. It is recognized as such by the U.S. surgeon general and the American Academy of Pediatrics. And it is the only therapy currently funded under Ontario’s autism program. ABA uses repetition and positive reinforcement — rewards such as stickers and blowing bubbles — to help children master life and social skills, such as dressing, toileting and having a conversation.

But Alex Echakowitz, 21, another young adult on the autism spectrum, says the therapy is abusive.

Instead of trying to “fix” autistic behaviour, Echakowitz is among a group of autistic adults who prefer accommodating the behaviour.

Echakowitz’s views are shared by the 300 members of Autistics for Autistics Ontario (A4A Ontario), a group he co-founded in 2017. The province’s only self-advocacy group for people on the spectrum also has an active Facebook page and more than 700 Twitter followers.

Echakowitz and A4A are “beyond frustrated” with media coverage of the Ford government’s autism services overhaul and the focus on parents and therapists enraged about cuts to ABA funding.

No one has bothered to ask autistic adults about their experience, said Echakowitz, formerly known as Kyle, who identifies as non-binary and uses the pronouns “they” and “them.”

Autism spectrum disorder (ASD) is a complex developmental disability that affects communication and social interaction and may include repetitive behaviours and restricted interests. It affects every individual differently and has no cure. But symptoms, abilities and experiences have been shown to improve over time with the help of evidence-based therapies and interventions, such as ABA.

About one in 66 children in Canada is diagnosed with autism. More than 100,000 Ontarians, including about 40,000 kids, have the disorder.

With 23,000 children on the province’s wait list for publicly funded ABA therapy and just one out of every four children diagnosed with the disorder receiving government help, Children’s Minister Lisa MacLeod said the government had to act.

Ontario currently offers funding of $55 an hour for ABA therapy and a child with moderate to severe autism requires between 20 and 40 hours a week.

Instead of serving just a fraction of eligible children with needs-based ABA funding that can run as high as $80,000 a year, Ontario is switching to age-based funding with spending caps so that every child will receive some help within 18 months.

But parents and clinicians argue the new funding regime, which proposes to give up to $20,000 a year for each child under age 6 and up to $5,000 a year for older children up to age 18, will leave most families unable to purchase the ABA therapy their kids need.

Funding will be based on a sliding scale and only families earning less than $55,000 in net income will qualify for the entire amount. Those with net incomes over $250,000 will get nothing.

Over the years, a wide range of questionable therapies and treatments have been promoted — including special diets and even swimming with dolphins — to help autistic kids learn communication and social skills and avoid self-harming behaviour and isolating fixations.

In intense intervention, ABA therapists work one on one with children to break down skills into small, teachable steps. Once a skill has been mastered, the therapist works on helping the child use the skill in a natural setting.

For example, a child may be taught to use scissors and glue during a therapy session and then encouraged to use these skills while making a craft at daycare.

ABA was developed in the 1960s at a time when therapists were focused on “curing” people with autism, and slapping and even electric shock therapy were encouraged to stop problematic behaviour.

But the therapy has evolved significantly since then, says Julie Koudys, a clinical psychologist and board-certified behaviour analyst at the doctoral level. She is also a member of the provincially appointed Clinical Expert Committee for ASD.

In 1998, the international Behaviour Analyst Certification Board (BACB) was created to “protect consumers of behaviour analysis services worldwide” and promote professional standards. Board-certified ABA therapists must meet education and training requirements, pass an exam, engage in professional development and adhere to codes of conduct. In 2004, the board adopted an ethical compliance code that sets out strict parameters for what can happen during therapy, Koudys said.

For example, the use of “time-outs” or withdrawal of a favourite toy in therapy is prohibited unless positive reinforcement has proved ineffective. The requirement is the same for the use of more intrusive procedures such as restraints, which is extremely rare and reserved for the most high-risk behaviours, such as eye gouging, head banging and eating non-edible items, she said.

But board certification is still voluntary in Canada, which is why the Ontario Association of Behaviour Analysis (ONTABA) and parent groups have been pressing the provincial government to regulate ABA therapy in the same way it regulates nurses, psychologists and early childhood educators who must belong to regulatory colleges to practise. Regulatory colleges adjudicate complaints and protect the public from abuse through their authority to sanction and even remove members’ right to practise for breaching professional standards, Koudys notes.

Koudys, chair of ONTABA’s Scientific Expert Taskforce for the Treatment of ASD, is familiar with concerns raised by Echakowitz and Autistics for Autistics, and the association has invited the group to meet with them.

“I would never challenge another person’s lived experience,” she said. “But we have to look at the wide body of evidence-based research that points to the effectiveness of ABA.”

A 2017 study by American researcher Henny Kupferstein that found evidence of increased post-traumatic stress disorder symptoms in autistic people exposed to ABA, in a survey of 460 respondents, has serious flaws in its design and methodology, Koudry said.

These shortcomings were highlighted in a peer-reviewed study last year, funded by ABA interest groups, that found Kupferstein’s results “should be viewed with extreme caution.”

“I would hate to see a study like this deter parents from seeking ABA therapy for their child,” Koudys said.

Echakowitz remains unmoved.

Echakowitz, who identifies as an “ABA survivor,” was diagnosed with autism at age 6 and says the therapy “made me feel like I had no autonomy.”

Working on “sensory input,” or touching something that felt unpleasant, was particularly difficult, Echakowitz said.

“If the sensory input caused me sensory overload and resulted in a meltdown, I was punished for it. Put in time-out. Had my electronic devices taken away,” Echakowitz recalled.

“It resulted in a lot of difficulties in later life, like completing basic tasks. Like brushing my teeth.

“I was never really given any methods to properly deal with (the upsetting stimuli). All that really happened is I was punished for reacting to it.”

Echakowitz’s experience of therapy more than a decade ago has been explained as “outdated” or the result of a “bad practitioner.”

“But it really doesn’t feel like much has changed,” Echakowitz said. “There is no regulation. And no (required) documentation as far as use of ABA in school environments.”

Parent Laura-Kirby-McIntosh knows autistic adults are split over ABA.

“I wouldn’t deny anybody’s truth,” said Kirby-McIntosh, president of the Ontario Autism Coalition, the outspoken parent group whose members have been protesting outside MPP offices and filling the public gallery at Queen’s Park.

“If Alex’s experience was traumatic, then I grieve that with them,” she said.

She acknowledges individuals with autism may find the therapeutic intervention unpleasant.

“But there are lots of evidenced-based interventions for different conditions that are unpleasant,” she said. “My dad is going through kidney dialysis right now. It’s not pleasant. There are times when it may be traumatic. But it’s keeping him alive. And it’s effective.”

Kirby-McIntosh, whose son Cliff, 19, is autistic, said she also knows many children and young adults who enjoy their therapy, look forward to it and “get excited when they go to their therapy centre.”

Cliff had “lots of times” when he enjoyed therapy. But there were also times when he didn’t enjoy it so much, she acknowledged.

Now that he’s a young adult, he understands the benefits of almost five years of intensive ABA therapy, she said.

Just this month he moved into his own assisted-living apartment and is attending Thornlea Secondary School.

“He can cook for himself, dress himself, he can do his own laundry. He can get himself to school and back. He can do all of those things, thanks to ABA.

“I don’t deny there have been some practitioners who don’t practise ABA in an ethical way,” Kirby-McIntosh said. “That’s why the (coalition) has fought consistently since 2005 for meaningful regulations. So if someone is harming a child while they are supposed to be helping, there is something we can do about it.”

A government list of service providers, as MacLeod is proposing, doesn’t safeguard parents because no one is checking credentials, she added.

Elsbeth Dodman, 30, who wasn’t diagnosed with autism until she was 14, says she is glad she didn’t qualify for ABA in the 1990s.

“The ABA you see today is not the ABA of the ’90s,” she said. “When you are talking to adults who received ABA 20 to 40 years ago, it’s not surprising they would say, ‘I don’t want that for another child. I don’t care that it has changed.’”

Dodman has a postgraduate certificate in autism behaviour sciences from Fanshawe College and could have trained to become an ABA therapist. But she says “conflict” in her community over the treatment persuaded her not to pursue a career in the field.

“My first responsibility is to my folks, other autistic people,” she said. “I’ve got to be listening to them first and side with them on it.”

She said she wishes parents, clinicians and adults with autism could sit down “and learn from each other.”

The lack of consultation with adults living with autism has been a longtime concern for Dr. Kevin Stoddart, director of the Toronto-based Redpath Centre, Ontario’s largest mental health treatment centre for adults and youth on the autism spectrum.

Stoddart has reviewed Kupferstein’s research against ABA and agrees the subsequent critique “raises many valid concerns about the methodological rigour of the research study and the nature of the findings.”

However, he feels the mental health of people with autism requires “more focused investigation.”

“In-depth interviews with autistic teens and adults about treatment and supports received in childhood would be the best place to start,” he said.

This might lead to better research on the impact of a range of childhood autism services, not just ABA, he added.

“Historically, in the field of autism, we have not included adults and youth with autism in dialogues about treatment and services and intervention,” he said. “And that has to change.”

Laurie Monsebraaten is a Toronto-based reporter covering social justice.

https://www.thestar.com/news/gta/2019/02/23/questions-swirl-around-therapy-at-centre-of-ontarios-autism-changes.html