Human rights of people with autism not being met, leading expert tells United Nations
At least 1% of the world’s population is on the autism spectrum, which equates to some 70 million people with autism on the planet. Autism is a spectrum of neurological disabilities involving difficulties with social relationships, communication, adjusting to unexpected change, dealing with ambiguity, and entailing sensory hypersensitivity and anxiety. Autism also leads to a different perceptual and learning style, so that the person has a preference for detail, and develops unusually narrow interests, and an unusually strong preference for facts, patterns, repetition and routine.
“People with autism account for a significant minority of the population worldwide, yet we are failing them in so many respects,” he said. “This creates barriers to their participation in society and to their autonomy that must be addressed. We have had a UN Convention to support people with disabilities for over 10 years now and yet we still are not fulfilling their basic human rights.”
In his speech, Professor Baron-Cohen reminded the UN that in Nazi Germany during the Holocaust, people with intellectual disability were killed in their thousands, under the compulsory euthanasia laws. Many of these individuals likely had autism, even before we had a name for it, as the first report of autism by Dr Leo Kanner was published during the Second World War.
However, historical violations of the human rights of people with autism go back further than that: in the US, in the 1920s, many States passed laws to compulsorily sterilize people with intellectual disability, including those whom today we would recognize had autism, in the name of eugenics.
Professor Baron-Cohen highlighted six examples where he believes the human rights of people with autism are not being met.
First, the right to dignity: According to the National Autistic Society in the UK, half of adults with autism report they have been abused by someone they thought was a friend. Half of adults with autism report they stay home because of fear of being abused in some way. Individuals with intellectual disability, including those with autism, are three times more likely to be victims of abuse or neglect, robbery, or assault.
Second, the right to education: one in five children with autism have been excluded from school. Whatever the reason for being excluded, they are being deprived of the right to education. And of the other 80% of children with autism who have stayed in school, half report having been bullied, which is a risk factor for depression.
Third, the right to equal access to public services: one in three adults with autism experiences severe mental ill health because of lack of support. In Professor Baron-Cohen’s clinic for adults with Asperger Syndrome, a subgroup of autism, two thirds have felt suicidal and one third have felt so bad that they have attempted suicide. Research from the Universities of Cambridge and Coventry in the UK found that among those who have died by suicide, approximately 12% had definite or probable autism. Professor Baron-Cohen called for a minute’s silence to remember those people with autism who have died by suicide.
Finding such a high rate of autism in people who have died by suicide is not surprising when you consider how many of these individuals did not have the benefit of early diagnosis, explained Professor Baron-Cohen. Early diagnosis is possible in childhood – there are screening measures that can detect autism in young toddlers, but most countries do not screen for autism.
He drew attention to the fact that in the UK, in many areas, the waiting time for a diagnosis can be up to a year or longer, and that in high- and middle-income countries, people with autism may receive a formal diagnosis, but in low-income countries, the majority of people with autism may remain undiagnosed, either because of stigma, ignorance, or lack of basic services.
Fourth, the right to work and employment: Professor Baron-Cohen said that only 15% of adults with autism are in full time employment, despite many having good intelligence and talents. The right to work should extend to everyone, whatever support they might need. Unemployment is another well-known risk factor for depression.
He commended some enlightened employers, like the German company Auticon, the Danish company Specialisterne, and the German company SAP, for setting an example of how to help people with autism into employment and how employers can make reasonable adjustments for people with autism.
Fifth, the right to protection from discrimination, and the right to a cultural life, and to rest and leisure: He described how many people with autism have been asked to leave a supermarket or a cinema, because of their different behaviour. He said this is discrimination and again would never be tolerated for other kinds of disabilities.
In addition, half of adults with autism report feeling lonely, a third of them do not leave the house most days, and two thirds of them feel depressed because of loneliness. One in four adults with autism have no friends at all.
Finally, the right to protection of the law, and the right to a fair, impartial trial: one in five young people with autism have been stopped and questioned by the police, and 5% have been arrested. Two-thirds of police officers report they have received no training in how to interview a person with autism. Many legal cases involving someone with autism result in imprisonment for crimes the person with autism may not have committed, or for crimes others committed, but the person with autism became tangled up in, because of their social naivete. Some of these crimes are the result of the person with autism becoming obsessed with a particular topic, a product of their disability, and yet the courts often ignore autism as a mitigating factor.
Professor Baron-Cohen ended his address with a call to action. “We must take action. I want to see an investigation into the violation of human rights in people with autism. I want to see increased surveillance of their needs, in every country. And I want us to be continuously asking people with autism what their lives are like, and what they need, so that they are fully involved in shaping their future. Only this way can we ensure their human rights are met.”
Simon Baron-Cohen is Professor of developmental psychopathology at the University of Cambridge in the United Kingdom. He is the Director of the University's Autism Research Centre, and a Fellow of Trinity College. This article originally appeared on the University of Cambridge website.
Craig Brierley, Head of Research Communications at University of Cambridge.
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