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ASPartOfMe
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26 Apr 2022, 8:36 am

Why An Autism Diagnosis Is Not A Label But A Roadmap
Jennifer "Jay" Palumbo CEO of Wonder Woman Writer & Mom to two boys, one with autism

Quote:
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."


The last two paragraphs I bolded admits to what I have been theorizing for years. ABA is designed to intercept or deflect the natural process of “Autism genes” doing what they naturally do and most of which happens at the beginning of life thus the frantic push for early intervention.

Putting aside ABA this push for early intervention is part of the larger societal problem of micromanaging childrens lives. Just because a baby or toddler shows autistic traits does not mean that person is autistic. Children mature at different rates. Every other month on Wrong Planet it seems there are new threads where members rue getting diagnosed as a child, older adults wished they had been diagnosed as a child, or are glad they weren’t. While in general I disagree with early diagnoses there are children for whom it is obvious and warranted. I think if there is over diagnosis it is not adults who are accused of following a fad, being attention seekers/drama queens and using autism to excuse bad behavior that is the cause, it is the ABA push for early intervention.

Notice the emphasis on social “deviation”.

This article uses a lot of neurodiversity movement talking points, naming April “Autism Acceptance Month”, denouncing stigma, discussing under recognition in minority groups. This is 2022 and in order to market to todays parents you have to use the language of “Diversity, Equity, and Inclusion”. Do not get me wrong, erasing stigma etc are good things, the problem is whether these people recognize it or not the end goal is the same old, same old erasing as much autism as possible.


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26 Apr 2022, 9:59 am

I was diagnosed at age 64. It might have been nice to have been diagnosed earlier, like maybe in my 50s...maybe even in my 40s. It probably would've created problems for me if I was diagnosed before that.

And I'm glad my parents accepted me the way I was. With corrections on those rare occasions I really had done something bad.


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autisticelders
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02 May 2022, 7:20 am

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


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Mona Pereth
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02 May 2022, 9:08 am

autisticelders wrote:
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

Thanks very much for calling our attention to this article: "Why autism therapies have an evidence problem" by Rachel Zamzow, Spectrum News, 14 April 2022. This article begins as follows:

Quote:
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.


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kitesandtrainsandcats
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03 May 2022, 4:01 pm

Some intense conversations about ABA within the comments on articles here,
https://neuroclastic.com/aba/


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kitesandtrainsandcats
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03 May 2022, 4:06 pm

autisticelders wrote:
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


In that, I'm looking at the following and wondering, Why would that experience come as a shock?
It has long been known that a lot of science is not at all about science but is totally about personal pride and ego.
"
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.
"


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ASPartOfMe
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11 May 2022, 10:46 am

New Zealand’s Neurodivergent community divided over the use of ABA therapy on autistic children

Quote:
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.


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman