TA’s response to the proposed new US autism policy

Our charity’s response to the US Department of Health and Human Services’ announcement on autism

Thinking Autism welcomes the historic public statement on the proposed new US autism policy, which was delivered at a White House press conference on Monday 22 September by Donald Trump, the President of the United States of America, Robert F Kennedy Jr, Secretary of the Department of Health and Human Services (HHS), Dr Jay Bhattacharya, Director of the National Institutes of Health (NIH), Dr Marty Makary, FDA Commissioner, and Dr Mehmet Oz, Administrator of the Centers for Medicare and Medicaid Services (CMS).

Our charity is in complete agreement with the characterisation of “the meteoric rise in autism” as “among the most alarming public health developments in history”, with a “cataclysmic impact… on our nation’s children”. For far too long, policy makers in the UK and across the world have turned a blind eye to the surging autism rates, attributing them to ‘better awareness’, and ignoring the large body of empirical and scientific evidence which shows that at least part of the increase is real.

Our charity also endorses the view, expressed by all the speakers at the press conference, that profound autism is a serious disability, which can cause severe suffering. Children and adults with profound autism usually have intellectual disability, which often means they have very limited communication, little awareness of danger, and cannot look after their own basic personal care needs. Many also suffer from epilepsy, some have very challenging behaviours, and, without (hitherto unavailable) effective treatment, all will need a very high level of care and support throughout their lives.

The President and the other senior leaders made it clear that tackling the autism crisis was a top priority. The most widely publicised proposal was a precautionary change to health warnings for acetaminophen (paracetamol), due to some research showing a possible connection to autism for pregnant women, infants and toddlers. However, as stated by HHS Secretary Robert F Kennedy Jr, they are “currently testing multiple hypotheses, with no areas off limits”. He said they are “turning over every stone to identify the aetiology of the autism epidemic”, and promised to deliver “actionable information to parents on underlying causes of autism and the potential paths for prevention and reversal.”

 

NIH Director Dr Jay Bhattacharya announced the launch of a new Autism Data Science Initiative “to turbocharge autism research”, with $50 million allocated to 13 projects “focused on root causes and therapies with replication and validation studies to guarantee gold standard science.” CMS Administrator Dr Mehmet Oz discussed the “first FDA recognized treatment pathway for autism”, leucovorin, a treatment for folate deficiency, which may help improve core autism symptoms in some cases.

These statements represent a major departure from the prevailing narrative that all autism is just a part of neurodiversity, which should be accepted and even celebrated, rather than a disorder and disability that may be amenable to treatment. The message from the White House embodies a paradigm change of approach, away from the ‘social model’ of autism, which eschews treatment, and towards a medical model targeting underlying causes.

The announcements made at the press conference on Monday will no doubt be very reassuring for thousands of parents of individuals with profound autism across the USA, whose pleas for help with their children’s medical issues have until now fallen on deaf ears. We can only hope that policy makers in the UK will take heed of the example set by their counterparts in the USA, acknowledge the seriousness of the autism crisis, and take steps to address the terrible toll it is taking on the soaring numbers of affected families across the country.