John Clements is a clinical psychologist with over forty years’ experience. A specialist in the field of developmental disabilities, in this blog post John reflects on the changing landscape of autism provision throughout his career.
I began my career as a clinical psychologist in the UK over 40 years ago, in Cardiff’s Ely Hospital for the mentally handicapped. Ely was the first hospital in the UK to be the subject of a major inquiry into abusive care practices. I arrived in the aftermath of that scandal, part of the effort to bring things up to an acceptable standard.
The conditions that I encountered left upon me an indelible impression. There were about 150 children being cared for, many that I now know to have been autistic though few were diagnosed at the time. They lived in wards of about 20-25, sleeping in dormitories, with very limited access to education and the subject of a major new innovation – being given their own clothes as opposed to being clothed from a communal store. The conditions for most of the hundreds of adults there (again, many I would now know as autistic) were startlingly worse – many in wards of 50-70, maybe 2-3 staff on duty at any one time, sleeping in large dormitories, no personal clothing and few personal effects of any kind, no access to engaging activities other than being let out into the ‘airing court’. The sights and sounds of this mayhem, the names of so many of these people, were never to be forgotten.
So as we come to World Autism Awareness Month and World Autism Day there is much to celebrate in how things have moved on. The list is long and I will draw attention to only some of these improvements:
- A greater personal and public understanding of what we mean by ‘autism’ in all its many forms. This has been driven by academic research of outstanding quality, the increasing number of autobiographies by people so identified, the many accounts of family members of their journey with their son or daughter, brother or sister plus the smaller number of films and novels. This combined effort has meant not just an improvement at the more ‘cerebral’ level of what autism means but also the forging of a more empathic connection with those affected. This double advance has in turn meant an increasing emphasis on autism as a different way of being in the world rather than some kind of disorder or dysfunction.
- Improved access to diagnosis so that it is now far easier for families to find someone local to them who can diagnose competently. Diagnosis is a mixed blessing but is absolutely critical for parental support, organising early intervention and planning service support throughout the life span.
- A much wider range of services available that can provide competent support and a move to make services more personalised/ individualised.
- More recently a proper grasp that autism affects you throughout the life span and that we cannot just focus our efforts on children. We need to understand that adults have both enormous potential and a need for ongoing support if they are to find fulfilling and constructive lives.
I am sure there are many other ways in which things have moved forward. Things can always be better but it is also important to take time out to celebrate the achievements that have been made.
However not all is rosy in the garden. Of the many potential concerns I want to draw attention to what I will call ‘autism’s dirty little secret’, something that we struggle to acknowledge openly although everyone knows it to be the case. Along with the general territory that we call ‘autism’ comes a fragility or sensitivity that impacts the lives of many, some to a very serious degree. This is the vulnerability to sustained negative emotional experiences and to a lack of coping resources for life’s common difficulties. These difficulties often lead to the presentation of very difficult, sometimes dangerous behaviours. This may be part of a brief phase in life but often it is a much longer term issue. We have a lot of research which informs us about the nature of these difficulties and the supports that will move these situations on; but we fail extensively to act on this long standing evidence base, preferring instead to opt for denial (autism as ‘harmless eccentricity’ model) or for the deludedly comforting pathologisations of the ‘mental health’ industry. Thus parents are left struggling with hugely difficult behaviours, receiving little in the way of constructive and sustained support. Teachers and care stuff are left struggling likewise although they at least may get the ‘hail Mary’ intervention of increasing the number of staff to deal with a problem (without of course any necessary increase in the competence of that support). As situations go unresolved there remains the good old fashioned institutional option of moving the individual to some kind of (not so) special congregate service (‘challenging behaviour unit’) where they will languish, the evidence suggests, increasingly medicated, rarely in receipt of the supports that the evidence base indicates as effective and at risk of the very kind of abuses that I was introduced to 40 years ago. Read the Ely Report, read the inquiry into Winterbourne View, spot the difference and then tell me why we should listen to latest politician explain to me how we need to ‘learn the lessons’. There are no new lessons to be learned – we simply need to act on the lessons that were learned long ago.
So at this time of celebration I want to suggest
- We open up about the behavioural and emotional vulnerabilities that come with the autism territory
- We demand that the evidence base available is turned into services and working practices available to all those effected (both the individuals with autism, their families and others who live and work with them)
- We demand an entitlement to these services – that if we are going to identify people has having ‘challenging behaviour’ then that identification has to come with the entitlement to receiving the supports most likely to yield improvement
Can we do this? YES WE CAN
Will we do this?
John Clements is the author of ‘Letters to the Home Front, Positive Thoughts and Ideas for Parents Bringing Up Children with Developmental Disabilities, Particularly those with an Autism Spectrum Disorder’ published by Jessica Kingsley Publishers.