Who needs Autism Awareness?

Today is World Autism Awareness Day, an event organised by the United Nations since 2008 to “encourage member states … to take measures to raise awareness about children with autism throughout the world”. It’s become best known recently for Light It Up Blue, in which people are encouraged to wear blue, turn their websites blue and shine blue light on their buildings so as to “raise awareness” and to raise money for the genetic research funded by Autism Speaks, which is also notorious for scaremongering about the condition and, by extension, people affected by it. Not much talk is heard about the matter of how aware our professionals are of the needs of people, and particularly children, on the autism spectrum, despite the ample evidence, in the UK at least, that people empowered to make professional decisions about the lives and living arrangements of people with autism and other learning disabilities are woefully ignorant of them, and that people have died as a result.

Today the Guardian carried a long interview with Sara Ryan, the mother of Connor Sparrowhawk who died in an NHS learning disability inpatient unit in Oxford in 2013, in its Weekend supplement. He was known as Laughing Boy or LB and he drowned in a bath in the Slade House unit, having been left to bathe unsupervised despite his known epilepsy. His inquest last year found that his death was the result of neglect and the inquest and the reports surrounding it exposed the hideously inadequate nature of the care that unit provided. It also exposed the fact that NHS trusts are often more interested in protecting their reputations than with patients’ well-being and with doing the decent thing when they have failed them. It’s ironic that the same paper gave a whole page in the previous edition of the same supplement to a mother who had despatched a daughter to a private WWASP boot camp where she was held against her will for six weeks (others are held for years) with the help of private ‘escorts’ and some sleeping pills (see earlier entry; as of this writing, they have not responded to my letter to their Reader’s Editor). Two things make this ironic in the light of today’s feature. First, given that the behaviours which led to some of the young people being incarcerated in these camps consisted of skipping school and listening to ‘dark’ music, one wonders how many of them were on the spectrum but undiagnosed, and what effect the regime of the camps had on them. Second, it bears a close resemblance to how some of our autistic children and young people are treated: taken by force from home, sectioned in mental health units, moved miles from home for lack of facilities near home or the failure of the treating clinicians to understand that they are the reason the autistic person’s health and behaviour is deteriorating.

In this country, we still have people, children and adults, held in entirely unsuitable units miles (even hundreds of miles) from home, many of whom could live with their families with some support, or in their own homes if the care were made available. There is plenty of evidence that the psychiatric profession, which holds the power in these units, does not receive training in autism and does not understand the condition. Yet these people have the power to hold autistic people under sections 2 or 3 of the Mental Health Act for normal and manageable challenging behaviour, to control when they see their families and when or if they can go out, and to transfer them to other facilities if they decide they do not want to treat (or house) them any longer. In some cases, it appears that people have been sectioned on pretexts so as to make it possible to transfer them. It has been known for units to take autistic people in, knowing that they are not suited and bear no resemblance to their normal patient profile.

Connor’s has not been the only death in recent years. Thomas Rawnsley died in a private care home, where he was held under a Deprivation of Liberty order made under the Mental Capacity Act, in February 2015. His mother had been trying desperately to secure support for him so that he could live in the community with support, but the Court of Protection preferred to send him to this care home instead (where he was for a time the only resident). He died of a heart attack, and the injuries he had suffered in the weeks before his death remain unexplained. There was also the case of Stephanie Bincliffe, who died after spending seven years locked in a room at a Huntercombe hospital in Yorkshire; her weight gain, which led to her death by ventricular hypertrophy and obstructive sleep apnoea in mid-2013 was blamed on her self-mutilation and distress reaction when food wasn’t how she liked it rather than on the conditions of her confinement. That they failed to address this behaviour, the distress caused by her incarceration, or find somewhere that these things could be addressed in seven years is damnable, and the inquest did not question why she was in a unit for so long that did not know how to treat her properly.

Following some ongoing campaigns to get young people out of these units and into their own communities, two families have withdrawn from public view following threats from the staff holding their relatives; one had his leave cancelled over Easter just as his mother arrived to pick him up, and another nearly had his cancelled at short notice for spurious “risk assessment” reasons by a stand-in consultant. One might recall that the home where Thomas Rawnsley was held tried to cancel what would turn out to be his last Christmas leave as well. The need to avoid a difficult return always seems to trump his need, and his right, to be at home with his family (this has been used as an excuse to deny children in institutions family visits and outings and home leave for generations; it was suggested that my family visits at boarding school were bad for me as well). These ‘responsible clincians’ have such power to affect their patients’ lives and family relations at a moment’s notice, yet they have no obligation to understand their condition.

Picture of Maisie Shaw, a girl with autism from Hull who has been in psychiatric units miles from home because of the closure of her local unitWe may think we have moved on from the days when autistic people were called psychotic, retarded, naughty or just “little shits” rather than having an identifiable underlying condition, but autistic young people, whether they have a learning disability or not, still face a lack of understanding from staff in many schools, considerable difficulty and delay in getting diagnosed (especially girls) which is made worse by resistance by local authorities who would have to foot the bill for assistance or special education, a lack of a clear pathway after 18 for those with learning disabilities (the cause of a lot of crises in autistic people that age), difficulty and delay in arranging the appropriate care (which often takes years, as we have seen in the Josh Wills case and many others), a shortage or outright absence of inpatient facilities in the local area or even the same region (a result of it being fashionable to close them, as nobody who has no family connection to mental illness will mourn the closure of a psychiatric unit, even if it is really due to budget cuts, intractable maintenance problems or stupid bureaucratic reasons), and finally, cruelty and neglect in hospital, accompanied by separation from home and family and a long stay.

Autism awareness should not mean making the public scared of a ‘disease’ that isn’t. It should be about making sure our teaching, nursing, medical and allied professions know about autism, so that delayed diagnosis, crises and suffering can be avoided.

For more detail on the inadequacy of how autistic people are treated in our society, please read the following:

Ongoing petitions:

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