Pro ABA/early intervention article in Forbes

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April is Autism Acceptance Month – a time to highlight how being autistic isn't a disability but a different ability. However, many people still view autism as a "problem to be solved," which may cause delayed diagnosis. However, research shows that an earlier diagnoses and, subsequently, earlier interventions lead to significantly better outcomes in social symptoms.

Aside from problems within the autism diagnostic journey (the current diagnostic process can take up to almost three years), many parents also struggle with a fear of a stigma of an autism diagnosis, causing them to hesitate in taking the crucial first step toward a diagnosis for their child.

But it all starts with a diagnosis.

Colleen Kraft, former AAP President and Senior Medical Director of Clinical Adoption at Cognoa, a leading digital behavioral health company, has spent years educating parents and caregivers on recognizing signs of autism, reducing the stigma around an ASD diagnosis, and advocating for earlier screenings and diagnoses.

Lorri Shealy Unumb, CEO of the Council of Autism Service Providers, is a lawyer, mother of three teenage boys, and an internationally renowned autism advocate. She began her career as an appellate attorney with the United States Department of Justice and then a full-time law professor.

Following her son's diagnosis of autism, she began volunteering for autism causes, writing ground-breaking autism insurance legislation for South Carolina ("Ryan's Law") that passed in 2007 and served as the catalyst for the national movement toward autism insurance reform.

In addition, she served for a decade as the national head of state government affairs for the international non-profit Autism Speaks. Lorri is also the founder of the annual Autism Law Summit, now in its 14th year, and is co-author of the law school textbook "Autism and the Law." In 2010, she founded the Autism Academy of South Carolina, a non-profit ABA center now known as The Unumb Center for Neurodevelopment.

Dr. Kraft advises parents to focus on problems with the child's communication, especially in the social-emotional development domain.

The brain is most malleable when you're young," said Unumb. "And while I believe that ABA-based interventions work at any age, you can make the most difference in changing the trajectory of someone's life the earlier you begin the intervention."

Dr. Kraft agrees. "Rapid brain growth and development occurs in the first three years of life; early diagnosis of a deviation from typical social-emotional development can be best addressed while that young brain is still actively growing and making connections. Therapeutic interventions initiated with a very young child can change how their developing brain makes connections and interacts in our very social world."

I'll just leave this here. It seems that many to most "autism therapies" are not actually proved through scientific method to be effective. It is about time that some of this stuff is called out for what it is... money making programs for the benefit of the provider with no actual evidence that it is effective. I was so happy to see this recent article!

https://www.spectrumnews.org/news/why-a ... gC5QNWJk1g

Andrew Whitehouse never expected his work as an autism researcher to put him in danger. But that’s exactly what happened soon after he and his colleagues reported in 2020 that few autism interventions used in the clinic are backed by solid evidence.

Within weeks, a range of clinicians, therapy providers and professional organizations had threatened to sue Whitehouse or had issued complaints about him to his employer. Some harassed his family, too, putting their safety at risk, he says.

For Whitehouse, professor of autism research at the Telethon Kids Institute and the University of Western Australia in Perth, the experience came as a shock. “It’s so absurd that just a true and faithful reading of science leads to this,” he says. “It’s an untold story.”

In fact, Whitehouse’s findings were not outliers. Another 2020 study — the Autism Intervention Meta-Analysis, or Project AIM for short — plus a string of reviews over the past decade also highlight the lack of evidence for most forms of autism therapy. Yet clinical guidelines and funding organizations have continued to emphasize the efficacy of practices such as applied behavior analysis (ABA). And early intervention remains a near-universal recommendation for autistic children at diagnosis.

The field urgently needs to reassess those claims and guidelines, says Kristen Bottema-Beutel, associate professor of special education at Boston College in Massachusetts, who worked on Project AIM. “We need to understand that our threshold of evidence for declaring something evidence-based is rock-bottom low,” she says. “It is very unlikely that those practices actually produce the changes that we’re telling people they do.”

How this dearth of high-quality data on autism intervention has persisted despite decades of dedicated research is murky. Part of the problem may be that autism researchers can’t seem to agree on what threshold of evidence is sufficient to say a therapy works. A system of entrenched conflicts of interest has also artificially kept this bar low, experts say.

I'll just leave this here. It seems that many to most "autism therapies" are not actually proved through scientific method to be effective. It is about time that some of this stuff is called out for what it is... money making programs for the benefit of the provider with no actual evidence that it is effective. I was so happy to see this recent article!

https://www.spectrumnews.org/news/why-a ... gC5QNWJk1g

Applied behaviour analysis, or ABA, has been described as using positive reinforcement to encourage desired behaviour in people with autism.

Advocacy group Autistic Collaboration claims the practice is traumatic, but others say it can be helpful for autistic children, with one parent saying it “gave her son a voice”.

Waiheke Island resident Jorn Bettin, 55, is a trustee of the Autistic Collaboration and identifies as autistic.

He said he has “thankfully” not been subjected to ABA, but claims he is aware of people in New Zealand who have been traumatised by the practice.

“ABA in any form will always violate our human rights because it is based on this misunderstanding about who we are on the inside,” he said.

“Autistic children, who in this society are disabled children, should not have to work to fit in as non-disabled. They should be asked what they need, and given those accommodations."

Bettin said Autistic Collaboration is calling for a ban on all forms of ABA in Aotearoa, and for the Government to fund other tools.

Autistic Collaboration presented “The Human Rights Case Against Harmful Behaviour Modification for Autistic People” at the Global Disability Summit in February which critiqued ABA therapy.

The group also signed an open letter, along with 24 other international autism organisations, opposing "behaviourist pseudoscience in autism research" in an “Open letter to the Lancet Commission on the future of care and clinical research in autism”.

ABA therapy is practised at the charitable trust Acorn Autism.

Managing director Tami Harris agreed that the way the therapy was conducted in the past was controversial, but said it had come a long way.

“ABA as practised at Acorn is really a holistic programme that focuses on being fun, engaging and using the child's motivation to learn.”

Harris said the mission at Acorn was to help children with autism have more independence and choice in life.

“We’re following basically international, best practice, evidence-based [advice], which says that the most effective practice for helping children learn skills like communication is ABA."

New Lynn boy Max Page, 9, was diagnosed with moderate to severe autism when he was 18 months old.

His mother, Sarah, said the family accessed speech and language and occupational therapy, but Max struggled to make progress.

“He didn't sleep a lot, he didn't eat more than one or two foods, he was very rigid with everything having to be a certain way. All the things about autism that don't really make someone's life as enjoyable as it could be."

Sarah said the family decided to try ABA therapy, and that the sessions had been "fun and engaging”.

“We understood there was some controversy around it … so obviously we went into it very, very cautiously. ABA in New Zealand looks really different, it's play-based, and it's basically given my son a voice,” she said.

“The therapists are just amazing, they're like my son’s best friends. A session of ABA would look like them jumping on the trampoline,” she said.

Sarah said ABA therapy has given Max the opportunity to "thrive and not be swallowed up by the challenges.

An Autism New Zealand spokesperson said there was strong opposition to ABA within the autistic community.

“Our general position is that we don’t recommend or endorse any specific therapy, intervention, or support service (except our own), nor do we make blanket statements against any as there is always complexity and nuance within a title,” they said.

"We are currently working on guidelines to support decision-making when seeking support services for an autistic person. Fundamentally, any therapy that promotes distress, long hours of drills for young children or doesn’t accept the person as autistic, should be avoided.”

"The Ministries of Health and Education released the New Zealand Autism Spectrum Disorder Guideline in 2016,” they said.

"The guideline notes that ABA techniques can be helpful and encourages their consideration when an individual’s intervention plan is prepared. It also notes that there has been little or no research in New Zealand on the appropriateness of ABA in the New Zealand context and population.