A cure for autism? As researchers announce they have discovered a way to reverse condition, experts slam claims as 'bad science' and 'deeply insulting'

A cure for autism? As researchers announce they have discovered a way to reverse condition, experts slam claims as 'bad science' and 'deeply insulting'
By: dailymail Posted On: July 24, 2024 View: 134

Experts have slammed a study that claimed severe autism in children can be 'dramatically improved and reversed' with a controversial behaviour therapy.

The research focused on a pair of twin girls from the US whose autism was serious enough to require 'very substantial support' at 20 months old.

It was claimed the girls' symptoms were drastically reduced — to an indistinguishable level in one of them — after a two-year programme of interventions.

These included giving them Applied Behaviour Analysis (ABA), which aims to teach autistic children how to behave in 'appropriate' ways.

The study relied solely on anecdotal reports and descriptions from the girls' parents, rather than independent observations or assessments
The criticised study was published in the little-known Journal of Personalized Medicine

They were also placed on a gluten-free, low-sugar diet and given a number of dietary supplements, including omega-3 fatty acids, a multivitamin and vitamin D.

But experts say the study was poorly devised and amounts to no more than an 'anecdote'.

'These are not evidence-based interventions,' said Dr Rosa Hoekstra, a leading expert on neuro-developmental disorders at King's College London.

HOW AUTISM IN GIRLS CAN PRESENT DIFFERENTLY

Autism can sometimes be different in boys and girls. 

Rates of autism diagnosis are up to five times higher in men and boys.

The exact reason remains unclear, but some studies suggest boys are at greater risk of the varied genetic causes of autism.

Researchers also believe many girls may be 'flying under the radar', as they struggle to get a diagnosis, receive a diagnosis late in life or are misdiagnosed with conditions other than autism.

Signs of autism in girls that could be different to boys include: 

  • Hiding signs of autism by copying how other children behave and play
  • Withdraw in situations they find difficult
  • Appear to cope better with social situations
  • Show fewer signs of repetitive behaviours 

Source: NHS 

'It's very bad science. It's just an anecdote. And we don't do anecdotes in science.'

Dr Hoekstra said the extremely small sample size — just two children from the same family — means the findings cannot be generalised to other children.

The study, published the little-known Journal of Personalized Medicine, relied solely on anecdotal reports and descriptions from the parents, rather than independent observations or assessments.

And the parents were fully aware of, and involved in, the interventions — so their reports may have been biased.

Dr Hoekstra said: '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.

'I don't want to discourage hope, because hope is important. But the language of "reversal" is an outdated and inappropriate concept in 2024. 

'This is not responsible science. I work as an editor for a journal called Autism, but I would have never accepted this paper.'

Tim Nicholls, assistant director at the National Autistic Society, said the study was 'deeply insulting' to the more than 700,000 autistic people in the UK.

He said: '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. 

'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.'

Applied Behaviour Analysis (ABA) is highly controversial as it tries to 'train' autistic children to fit neurotypical standards.

The National Autistic Society says ABA is one of the most researched autism treatments, but there are significant limitations and gaps in the research, particularly about long-term effects.

It adds: 'We do not support any intervention that follows one-size-fits-all approaches...and we believe that some ABA interventions used today are not sufficiently person-centred and are too intensive.'

WHAT IS AUTISM? 

Autism is a life-long developmental disability, which affects how people act on a wide-ranging spectrum.

According to the Centers for Disease Control and Prevention, autistic people can have trouble with social, emotional and communication skills.

Others can find bright lights or loud noises overwhelming and stressful, or display repetitive behaviours.

Autism is not an illness or disease. 

How common is it?

It is estimated that around 700,000 people, including adults and children, in the UK have an autism diagnosis.

According to a Newcastle University study published in 2021, around one in 57 (1.76 per cent) children in the UK is on the spectrum.

In the US, the Centers for Disease Control and Prevention estimate 5.4million adults, some 2.2 per cent of the population, are autistic.

People from all nationalities and cultural, religious and social backgrounds can have autism.

Rates are up to five times higher in men and boys, though.

The exact reason remains unclear, but some studies suggest boys are at greater risk of the varied genetic causes of autism.

Researchers also believe many girls may be 'flying under the radar', as they struggle to get a diagnosis, receive a diagnosis late in life or are misdiagnosed with conditions other than autism.

Are there different types? 

Previously, autism was broken down into different diagnoses, including Asperger's syndrome, autistic disorder, Kanner's syndrome, childhood autism, atypical autism and pervasive development disorder not otherwise specified (PDD-NOS).

As each diagnosis shared characteristics of autism, they were replaced with autism spectrum disorder, which is now the umbrella term for the group.

However, some people with a diagnosis of Asperger's still choose to use the term.

According to the National Autistic Society, people with Asperger's do not have the learning disabilities that many autistic people have. The NHS says that some people call this 'high-functioning autism'.

What causes it?

Despite years of research, scientists do not know what causes autism.

Instead, studies have suggested it may develop from a combination of genetic and environmental influences.

Concerns about a possible link between MMR vaccines and autism were raised in the late 1990s.

But numerous scientific studies have since shown that there is no link at all between vaccines — or any of their ingredients — and autism.

Bad parenting is also not a cause.

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