“Nothing about us without us” — it’s the mantra of the movement that has moved from the fringes of the autism community to centre stage. Here we look at the growing influence of the neurodiversity movement that insists autism is not an illness to be cured, but simply a difference that demands acceptance. Darren Devine reports.
In October 2016 the world’s biggest autism advocacy group dropped the use of the word “cure” from its mission statement.
The volte-face by US non-profit Autism Speaks was testimony to the growing influence of a movement that started life in the 1990s as a fringe group trying to challenge the accepted notion of autism as an illness.
"Critics argue the neurodiversity movement is heavily skewed towards the needs of those with high-functioning autism."
Now the influence of the neurodiversity movement is everywhere. From tech firms going out of their way to recruit people with autism and adapting their working environments to enable them to flourish, to supermarkets and cinemas introducing quiet hours.
It seems the days when people with autism are compelled to “act normal” and fit in are rapidly fading into the past, with society, rather than the individual, increasingly asked to make accommodations.
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At its simplest the movement insists that just as people are ethnically, culturally and sexually diverse, so are they neurologically diverse.
So those labelled autistic, or as having conditions like attention deficit hyperactivity disorder (ADHD), dyslexia and learning disabilities, have brains that are wired differently due to the natural variation in the human genome.
People with autism, dylexia, ADHD and learning disabilities etc have always been here and their way of being is as legitimate as that of the so-called “normal” or neurotypical majority, argue neurodiversity advocates.
The movement’s most strident advocates claim mental health conditions like bipolar disorder, schizophrenia, obsessive compulsive disorder and even epilepsy and Parkinson’s disease are all forms of neurodiversity.
Autistic UK offers a strong online voice for neurodiversity.
Spokesman for the group Ryan Hendry, who is autistic, says the last decade has brought a major shift in how disabilities are viewed.
Hendry, 23, from Carrickfergus in Northern Ireland, said: “Everyday there are more and more autistic people being able to speak for themselves so I think that has lent a lot of weight to it.”
Diagnosed with ADHD as a seven-year-old and autism a decade ago, Hendry’s main challenges are with eye contact and hand flapping.
But Hendry, who works as a software developer, is a strong communicator on the phone. He says having a full-time job has helped develop his communication skills.
Hendry believes the future of the movement has to be focused on getting organisations to change practices and become more “autism-friendly” as well as ensuring the voice of people with autism is heard.
One of the movement’s goals is to end what it regards as the use of harmful therapies and treatments, like applied behaviour analysis (ABA).
The movement likens ABA, which uses rewards to shape behaviour, to dog training and says the technique is simply designed to make autistic people “more normal”.
Neurodiversity has its critics however, who believe the concept is deeply flawed.
Natasa Blagojevic, an advocate with biomedical charity Treating Autism, says her group fully supports acceptance and inclusion.
But she says it’s “absolutely ridiculous” to see autism as a design of nature.
“The brain is just an organ and you can argue that for any sort of organ dysfunction (that it’s just a different way of functioning).
“If you have eyes that don’t see well you can just say, ‘Oh, it’s a different way of seeing. I’m very, very short sighted and shouldn’t wear glasses because it’s a different way of seeing.’”
Blagojevic said the conditions that often co-occur with autism, like sensory processing disorder and hypersensitivity “severely reduce a person’s ability to function”.
She argues the neurodiversity movement is thriving because it offers a “comforting narrative” that “caters to a person’s need not to be afraid and not to have to do anything about a problem”.
Blagojevic also argues that it is heavily skewed towards the needs of those with high-functioning autism.
She says the notion that someone with high-functioning autism, who is married or in a relationship and holds down a job, can speak for families and people living with severe autism is “insane”.
“For me it’s the same as someone who has got a slight walking impairment, say someone who needs a cane to walk. They can’t really speak for someone who is quadriplegic. With any disability there are levels and levels,” said Blagojevic.
Hendry says those who draw an analogy between autism and physical disabilities are comparing “apples and oranges”.
He says the neurodiversity movement is a broad church and he doesn’t support the standpoint of some of its most evangelical proponents.
The software developer says he often finds himself at odds with others in the movement over the issue of medication. Hendry uses medication for his ADHD.
He said: “People who would conform to the very evangelical view of neurodiversity would say that’s wrong (to use medication).
“I would say, ‘No, I take the medication because I need to.’”
Neurodiversity advocate Shona Davison says treatments for autism can be harmful because they measure outcomes by how much more “normal” the person has become.
In an interview via Facebook Messenger the autistic mother-of-two wrote: “Non-autistic people see that as an improvement (becoming more ‘normal’).
“They rarely look at happiness or (the) well-being of the individual. What's the point in acting normal, but being unhappy?“
She suggested these treatments leave those with autism battling low self-esteem because they tell them “their way of being is wrong”.
But Davison, 40, from Sheffield, whose nine-year-old son and six-year-old daughter also both have autism, says some behaviours “need to be dealt with”.
She is not against medication and uses the antidepressant Citalopram to treat her own anxiety problem.
And Davison, who is studying for an MA in autism at Sheffield Hallam University, believes some behavioural techniques, like sticker charts, “have their place”.
But the techniques should not be used instead of working out and addressing the underlying reason for any behaviours that need to be changed, she said.
And she rejects the divide between those with severe and high-functioning autism. Those whose condition could be viewed as moderate often struggle with poor mental health and are the most likely to die by suicide.