In February a group of US parents who said they felt alienated by the growing influence of the neurodiversity movement set up the National Council on Severe Autism (NCSA). Could we see a similar split in the UK among parents who feel left behind by the movement that regards autism as a difference rather than a disability?
Claire Seiler says her 13-year-old daughter will grab women’s breasts, steal food from shops, hit, scratch and kick out.
The most worrying aspect, she says, is that her autistic daughter will target the most vulnerable, including a child in a wheelchair at school.
But Seiler believes her experience is being erased from all discussion by neurodiversity advocates understanding autism as a difference rather than a disability.
The autism exhibited here, which she describes as “quite severe”, is a life-limiting disability with no upsides.
Seiler unapologetically believes her daughter’s problems with food, touching women and aggression demand behavioural therapy and intervention, not acceptance.
Feeling marginalised Seiler, from London, contacted the National Council on Severe Autism (NCSA) in the US.
The group was set up last February by families who felt they needed a campaigning voice for the challenges they face.
Single-mum Seiler, 49, said: “I think there is a need (for a group like the NCSA in the UK) because they (families affected by severe autism) need a voice. They don’t have a voice right now.”
Seiler says the National Autistic Society (NAS) is dominated by neurodiversity advocates.
In a recent statement the NAS talked about how some people with autism regard it as a “fundamental aspect of their identity”. This strongly echoes the neurodiversity standpoint.
Seiler said: “The National Autistic Society is solely for people like that. I don’t think they support the severe end at all.”
The civil war that has opened up in autism even extends to whether families should be allowed to describe their child’s condition as “severe”.
But the world’s two major diagnostic manuals recognise autism has varying levels of severity.
The Diagnostic and Statistical Manual of Mental Disorders (DSM) 5 breaks autism down into three levels, with the third defined by “severe deficits” requiring “very substantial support”.
The International Classification of Diseases (ICD) 11 makes clear that people on the spectrum “exhibit a full range of intellectual functioning and language abilities”.
Secretary of the NCSA Amy Lutz says her son Jonah, now 20, would “launch” himself at herself and husband Andy with a “ferocity” that was “very difficult to manage”.
Lutz said at nine-years-old her son would punch, kick, try to bite and pull hair.
In the end she and her husband took the heartbreaking decision to try electroconvulsive therapy (ECT) after medication, behavioural therapy and a year in hospital failed.
She believes those who question her right to describe her son’s symptoms as “severe” have no direct experience of the most impaired end of the spectrum.
Lutz, who says her son is now doing “really well” after years of ECT proved a “life-changer”, added: “Just tell them to come and spend some time with my son and just experience the kind of impairments he suffers from and tell me that those are not severe and profoundly disabling.
[Editor's note: Learning Disability Today does not endorse or advocate the use of ECT.]
“Even though Jonah is not aggressive or self-injurious anymore he still has very profound impairments that will keep him from ever living independently, holding down a job, having any kind of romantic relationship. He’s going to be completely dependent his entire life and that’s the way they describe severe.”
The divisions in the autism community that led to the creation of the NCSA run much deeper than language — services and research are affected too.
Seiler says she has found it impossible to persuade her council to fund applied behavioural analysis (ABA) therapy for Ariella, even though she maintains it’s the only approach that has helped her daughter.
She says neurodiversity’s strong opposition to ABA, which is a rewards-based approach to learning, has left councils unwilling to support it.
As a result Seiler, who works in IT, is paying £900 a month to fund an ABA programme for Ariella.
Groups like Autistic UK, which promote neurodiversity, say ABA causes psychological damage.
They argue vulnerable children are denied rewards when they fail to show progress and this is effectively a punishment.
But in research too there is solid evidence scientists focus their efforts heavily on the more able end of the spectrum.
Recent work led by Dr Ginny Russell, of Exeter University, looked at original research published in 2016 in autism-specific journals.
The analysis took in 301 studies and 100,245 autistic participants. It found that 94% of those identified as being on the spectrum did not have a learning disability.
But current global estimates suggest the proportion of the population with autism who have a learning disability is around 50 percent.
Russell’s research concluded 80 percent of studies were skewed by selection bias.
In an exchange of emails focused on the formation of the NCSA neurodiversity advocate Janine Booth said she welcomed any initiative that “advances the interests of autistic people with higher needs”.
Diagnosed with autism seven years ago Booth, 52, says a “massive increase” in support services is needed, including care and housing.
However, Booth said she has concerns about the NCSA and believes it is “more helpful to describe people in terms of their needs rather than the severity of their autism”.
When asked which of the DSM levels best describes her own autism, or whether she had ever lived or worked with anyone with level three autism, Booth, said it was too personal to answer.
“The autistic spectrum is not a straight line from mild to severe; it is more multi-dimensional than that,” she wrote.
Booth, from London, accused the NCSA of attributing the suffering of autistic people “primarily to the autism, rather than to social factors (or to the interaction between the two)”.
She added that any initiative in support of autistic people with high support needs should be based on a social as well as a “medical” understanding and involve them “as much as possible”.
“I also hope that it (the NCSA) would seek to work with autistic advocates and organisations, to benefit from their insights and solidarity, rather than setting itself up in opposition or hostility,” added Booth.
In a statement Jane Harris, director of external affairs at the NAS, emphasised that autism is a spectrum condition and experiences are “very varied”.
She added: “Every day, we support many hundreds of autistic people with higher support needs directly in our residential and supported living social care services, in our specialist schools, and through our volunteer-run branches.”
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