Our charity is deeply concerned and saddened at the suffering endured by individuals with autism at Mendip House care home, as detailed in the recently published report from the Somerset Safeguarding Adults Board. The harrowing report should be mandatory reading for anyone who cares for or earns a living caring for a vulnerable person, with or without ASD. Residents were bullied, tormented, neglected and exploited.

The catalogue of cruel and degrading treatment of vulnerable people is all the more shocking because Mendip House was run by the National Autistic Society.

The National Autistic Society is the largest autism charity in the UK, with over 22,000 members and a total income of £97.3 million last year. It claims to be “working to change society for the better for those on the autism spectrum.” It channels a large part of its considerable resources into providing and lobbying for support and services for people with autism. The abuse and humiliation of people with autism at one of its care homes will be devastating news to families affected by autism across the United Kingdom, especially in light of reports that the NAS had information about some of the abuse long before any appropriate actions were taken.

Over the past thirty years there has been an enormous increase in the number of people diagnosed with autism, which means that adult services will come under even greater pressure as time goes on. The deplorable failure of Mendip House to uphold standards of common decency does not augur well for the futures of our vulnerable young people.

It is the view of our charity that the time has come for a new approach to autism. The ‘social model of disability’ espoused by the National Autistic Society and many other organisations has repeatedly failed our vulnerable people, with horrific stories of institutionalised abuse surfacing with sickening regularity. If a care home run by the leading UK autism charity can fail the people in its care so dismally, what does that say about the security and long-term future of anyone with autism who is unable to live independently?

Treating Autism is the only UK charity to support the ‘medical model’ of autism, and to advocate for research into effective treatments. At the same time, we are staunch defenders of the rights of people with autism to be treated with respect, dignity and compassion, and have their needs met in a caring environment. These two positions are not mutually exclusive. All the trustees and staff at Treating Autism are parents of individuals with autism. Like all parents, we want the very best for our children, including appropriate medical care.

There is a growing body of evidence to show that symptoms commonly associated with autism may be caused by various underlying medical conditions. Too often, many of these medical conditions remain unrecognized and untreated, partly because of difficulties in diagnosing people who are nonverbal or who may express pain in an atypical way, but partly because of the widespread refusal to acknowledge solid research showing that people with ASD are far more often medically ill than their non-ASD peers and the resultant diagnostic overshadowing. Our charity has received numerous reports of symptoms such as self-harming and aggression being attributed by medical professionals, without investigation, to ‘autism behaviours.’ Treatable conditions are not being diagnosed and families are offered antipsychotic medications as a first line of intervention.

What is more, some of the medical conditions associated with autism can be life-shortening. Shockingly, the average life expectancy for a person with severe autism is only 39.5 years. This heartbreaking statistic is not surprising given the research that correlates the severity of ASD with the severity of medical conditions.

Effective treatment of autism-related medical conditions could potentially alleviate suffering and improve quality of life for many people with autism. Furthermore, it may even help prevent, or at least reduce the number of abuses of power and trust typified by the Mendip House case. Who knows how many families have taken the agonising decision to place their child into residential care such as Mendip House due to behaviours which may have been caused by treatable medical conditions? Our charity has received reports from many families in the UK who have improved the health, well-being, and independence of their ASD children so significantly that residential care no longer needs to be considered as an option, let alone the only option. These personal stories reflect growing research and clinical experience that symptoms of ASD can be reduced with dietary, social and medical interventions appropriate to the individual. Our charity and the families we represent find the official lack of interest in these sorts of successes enormously frustrating and incomprehensible, given the economic and humanitarian repercussions of residential care.

In the wake of this latest shameful scandal, it is important to acknowledge all the many ways in which people with autism are being let down by society, including the realm of medical care. And it is imperative that we start putting things right.

Mendip House NAS scandal media report

Report of the inquiry findings by Somerset Safeguarding Adults Review – Mendip House scandal

Posted by TA team on Sunday, February 11th, 2018 @ 3:48PM
Categories: News