A case report led by a University of Maryland professor, published in the Journal of Personalized Medicine, has claimed to have “reversed” autistic traits in a set of twins – despite one of the toddlers still meeting the diagnostic criteria for the neurological condition after multiple interventions.
Epidemiologist Dr Chris D’Adamo worked on the paper, released last month, alongside Epidemic Answers – an organisation which seeks to help children “heal from health issues like autism, ADHD, allergies, asthma, autoimmune [conditions], eczema, mood disorders and more”.
The NHS states being autistic “does not mean you have an illness or disease” and is “not a medical condition with treatments or a ‘cure’”.
The case report references the concept of “total allostatic load”, concerning the impact of chronic stress on the body, which the twins’ parents came across after “reading popular books on the topic”, listening to audio materials on autism provided by an autism parent coach, and completing a survey created by Epidemic Answers’ research initiative, Documenting Hope.
The Child Health Inventory for Resilience and Prevention (CHIRP) is said to provide “a comprehensive assessment of total allostatic load among children” and the “stressors” which contribute to it.
The Autism Treatment Evaluation Checklist
The twins, who were diagnosed autistic in September 2021, are referred to as Twin ‘P’ and Twin ‘L’ in the research, with their scores on the Autism Treatment Evaluation Checklist (ATEC) in March 2022 given as 43 and 76 respectively.
Created by Bernard Rimland and Stephen Edelson of the Autism Research Institute (ARI) in San Diego, California, the questionnaire comprises 77 statements across four areas (communication, “sociability”; sensory and cognitive awareness; and health and behaviour) with lower scores indicating ‘fewer problems’.
However, the ARI states the document is “not a diagnostic checklist”.
Applied Behaviour Analysis
Following the diagnoses, several interventions were carried out on P and L, covering diet, nutrition and the application of Applied Behaviour Analysis (ABA) – a controversial practice which encourages non-autistic behaviour and discourages autistic actions, such as self-stimulatory behaviour known as ‘stimming’.
ABA has been criticised by advocates and organisations over its push to ‘hide’ autistic traits, with The London Autism Group Charity writing that the therapy “forces autistic people to mask their natural selves” – a process which is “extremely harmful to autistic and neurodivergent people’s health”.
In 2018, a paper by independent researcher Henny Kupferstein reported evidence of increased symptoms of post-traumatic stress disorder (PTSD) among autistic people subjected to ABA.
Dietary supplements
Elsewhere, Dr D’Adamo’s report notes the two female toddlers were given “a number of dietary supplements, including omega-3 fatty acids, a multivitamin, vitamin D, carnitine, 5-methyltetrahydrofolate and bio-individualised homeopathic remedies”, as well as being placed on a “strictly gluten-free, casein-free diet”.
Last year, a systemic review of the effect of omega-3 polyunsaturated fatty acids and vitamin D on autistic people by Chinese researchers saw the academics conclude omega-3 supplementation “was weakly effective in improving ASD [autism spectrum disorder] and was not sufficient to conclude that core symptoms were alleviated”.
On the supplementation of vitamin D, the review authors wrote they could not “directly conclude that vitamin D supplementation has a beneficial effect on a specific symptom of ASD”, but that the “overall conclusion” is that it has a “positive effect on behavioural functioning”.
Meanwhile, a 2020 paper from researchers in Ankara, Turkey concluded by saying “the effect of [a gluten-free, casein-free diet] on autistic behaviour is not clear”, while a 2018 article by community paediatric dietitian Emma Jordan – published on the National Autistic Society’s (NAS) website – states “there is not enough evidence” to recommend the diet “for all autistic people” and that it is “not without risk”, but that “some do report feeling better when following it”.
“Further research is needed as studies have been inconclusive,” she writes.
Dr D’Adamo and Documenting Hope also acknowledge limitations around the study, including that the “comprehensive approach” used “may not yet be widely generalizable”, the cost of and access to the care and modifications would be “financially prohibitive” and possibly “limited” for “many families”, and that there is a “lack of clear evidence of the isolated effects of each of the modalities that were employed”.
“It has become increasingly clear that ASD treatment is not one-size-fits-all and that personalised, multi-modality treatment approaches to help address the total load of stressors are likely required to achieve optimal outcomes,” it reads.
Still meeting the diagnostic criteria for autism
Despite doubts over the efficacy of the treatments, the study cites the change in ATEC scores, among the “meticulous documentation of diagnosis” and “detailed behavioural reports” as information which “helped rigorously establish the twin’s improvement and reversal of symptoms” – with a second questionnaire in October 2023 now giving scores for P and L of 4 and 32 respectively.
L, whose ATEC score rose to 34 in March 2024, was also found to still meet the diagnostic criteria for autism (per the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5) when she was re-evaluated alongside P in 2023 – although Dr D’Adamo told Liam O’Dell no formal autism assessment was carried out at this stage.
He continued: “P’s symptoms, as reflected by an ATEC score of 4 (and further decreased to just 1 since publication) are reflective of minimal symptoms. L’s symptoms have improved dramatically, but are not quite on par with P.
“ATEC is utilised to assess symptoms, and there were dramatic improvements.”
It is not clear if P also met the diagnostic criteria for autism in 2023.
This website has requested a copy of the twins’ ATEC questionnaires.
A “reversal of [autism] diagnoses” among the twins
The report goes on to claim there was a “reversal of the Level 3 Autism Spectrum Disorder diagnoses among dizygotic toddler twin girls that was achieved through environmental and lifestyle modifications over a two-year period”, but Dr D’Adamo added the study “concluded that there was a reversal of autism symptoms, not autism diagnosis”.
“The focus on symptoms is included throughout the paper, starting with the title,” he said.
The parents of the twins have also commented on the outcomes, with a quote from one of them, included in the report, reading: “Early in our navigation, we adopted a ‘total load’ theory, understanding that there was not one ’single’ factor that catalysed their diagnosis but the combined assault of many injuries.
“In accepting the very complex presentation of ASD, we also understood that there would be no singular ‘cure’ for it either. Conventional statistics have stacked the odds against the ability to recover a child from an ASD diagnosis.
“Through this approach, we have witnessed the radical recovery of one daughter—who presents today as a joyful, engaging, spirited, extremely bright 4-year-old. We remain steadfast in our support for our other daughter whose progress has also consistently amazed us and has reminded us that recovery is possible at each person’s individual pace”.
The Telegraph piece and the community reaction
While Dr D’Adamo insists the study focusses on the “symptoms” of autism (many advocates and professionals instead use the term “traits”), UK newspapers have led with the claim that “autism can be reversed”.
The Telegraph published an article on Saturday with the headline “autism can be reversed, scientists discover”, and The Daily Mail ran with the line that a “’miracle’ trial claims severe autism can be reversed with symptoms reduced to an indistinguishable level when treated with regular interventions at a young age”.
It followed-up with a piece on Wednesday titled “A cure for autism? As researchers announce they have discovered a way to reverse condition, experts slam claims as ‘bad science’ and ‘deeply insulting’.”
The study was described as “deeply insulting” by NAS, which wrote on Twitter/X on Sunday: “There are some articles in the news today about research that claims autism can be ‘reversed’.
“This is deeply insulting to the more than 700,000 autistic people in the UK. We are completely baffled why this has even been published by UK papers.
“This is a case study of a single set of twins using interventions that are themselves questionable. There are absolutely no conclusions at all that can be drawn from this and to suggest otherwise is just irresponsible journalism. We’ve repeatedly told outlets that we can help decipher shoddy research and avoid misinformation being published.
“Autism cannot be ‘cured’ or ‘reversed’. Imagine seeing headlines that a core part of your identity could be ‘reversed’. Language like this sets us back and just goes to show how far we still have to go to build a society that works for autistic people.”
Speaking to the Daily Mail, Dr Rosa Hoekstra, a King’s College London academic specialising in neurodevelopmental disorders, criticised the study as “very bad science”.
She said: “It’s just an anecdote, and we don’t do anecdotes in science.
“If you’ve invested a lot of money and an incredible amount of time in these interventions, you will naturally hope to see results, and will likely frame any development you see as successful outcome.
“Autism is a constellation of personality characteristics, likes and dislikes, things that you might be good at, things that you might find difficult, and those tend to be fairly stable traits.
“Particular interventions can really help children or adults thrive. But that doesn’t mean that fundamentally their personality or their being has changed.”
When approached for a right of reply to NAS’s remarks, Dr D’Adamo denied the research was “shoddy”.
He told Liam O’Dell: “This case report, which was published in a peer-reviewed journal, adhered to and cited the CARE guidelines for research reporting of case reports. These are the rigorous standards that are part of the EQUATOR network that research reporting quality.
“While prospective studies are certainly needed to conclusively determine the efficacy of this approach, this case report was written in accordance with the highest standards for case reports and there is nothing ‘shoddy’ about that.”
Update – 27/07/24 – 20:00: It’s understood P did not meet the diagnostic criteria for autism in 2023, with the physician noting the toddler had “very few symptoms anymore”.
Autism research is explored in further detail in Liam O’Dell’s upcoming debut non-fiction book, ‘Selling Out the Spectrum’, out on 21 November 2024 and available to pre-order now.
This article was originally published by a liamodell.com . Read the Original article here. .