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The 2009 Autism Act promised much but putting it into action is a whole different ball game, even though some improvements can be delivered at very little cost, writes Dr Mitzi Waltz

When the Autism Bill became the Autism Act in October 2009, it was hailed as a cause for celebration by many autism advocates and organisations. Sponsoring MP Cheryl Gillan called it “a triumph for people with autism and their families”. As the first disability-specific law in England, it is certainly historic. But can it live up to the expectations attached to it?

The Autism Bill campaign centred on facts that should make unpleasant reading for policymakers and service providers. Not only are few adults on the autism spectrum receiving adequate support and care, most local authorities have no idea how many live in their area. Would-be service users report battling to receive help and routinely encountering staff with little to no knowledge of autism. Most support is still provided by ageing parents, who justifiably worry about what will happen when they are gone:

According to the National Autistic Society’s I Exist report, parents are paying the bills for 61 per cent of adults with autism, with over 40 per cent still living in the parental home. Just 15 per cent are in full-time work; some can access neither work nor benefits. Even getting routine health care is difficult for many, and mental ill health is a frequent and unnecessary outcome.

Despite the hype, the Autism Act sets out to solve only some of these problems. It is primarily a scoping and advisory initiative. Guidance will be issued to the NHS and to local authorities in England and Wales about improving diagnostic and assessment services for adults, and keeping track of local numbers.

Results of a small national population-counting exercise have already been released, showing that 1 in 100 adults are on the autism spectrum. Even if indentifying autistic people is all the Act actually accomplishes, putting the numbers down on paper will be helpful. Without them, it’s hard to light a fire under policymakers’ feet.

As always, the devil is in the details, and these will arrive in the Autism Act guidance before the end of 2010. Consultation on this document has already begun. Though its exact recommendations cannot be predicted, they will certainly include improvements in staff training. Similar calls were sent out to schools some years ago, however, and they still have not been fully answered. Attendance at an ‘autism awareness’ talk has been deemed sufficient by some local authorities, and many still routinely give untrained teaching assistants the difficult job of working most closely with autistic students.

Considering that adverts for direct adult care posts tend to include wording along the lines of “previous experience is desirable but not necessary”, the likelihood that autism expertise will suddenly appear seems remote. Unless the guidance sets clear standards for minimum and desirable training, this requirement may be met on paper rather than in reality. Indeed, some adult care facilities and agencies that already claim a specialism in autism have nothing of the sort.

The expected call for service improvements is also welcome, but will run into a lack of real-world research on what kind of services contribute most to improved quality of life for adults with autism. Supports and techniques for working with children have been researched far more widely, yet even there the evidence base for what works is sorely lacking. As research carried out for the Autism Education Trust by the University of Birmingham’s Autism Centre for Education and Research in 2008 indicates, most placement and provision decisions about children are still based on assumptions and attitudes rather than evidence.

Few adult studies have gone beyond the anecdotal. Most tally questionnaire responses, or provide case studies about working with one or a few individuals. One of the few things that can be stated with certainty is that most people on the autism spectrum improve their ability to cope over time – but as of yet, we have little evidence backing up our guesses about how best to support resilience, build on strengths, encourage independence and provide the right kind of help.

Crucially, the Autism Act does not mandate service delivery, only that planning and leadership related to it should follow the guidance. Impending budget cuts in health and social care will make it difficult for local authorities to pilot new services, much less allow these pilots to take wing permanently. Since coping with change is extraordinarily difficult for people with autism, time-limited provision is more cruel than kind.

However, some improvements can be delivered at little cost. One of the most important changes needed has been discussed extensively during the NHS adult strategy consultation: permanently ending the battle between adult mental health and learning disability over who supports people with autism. Currently, adults with a dual diagnosis of autism and low intellectual ability have access to specialist services via NHS learning disability services, but expertise in autism-related needs within these can be limited. Adults with an IQ over 70 find themselves in an even worse situation, often unable to obtain help anywhere. Their difficulties with social communication make using generic mental health services a problem, and often the challenges they face are not related to mental ill health but arise from autism itself. Adults taking part in the recent NHS consultation advocated strongly for a specialist service, and several of the examples of autism ‘best practice’ cited by the Department of Health in its 2009 guidance for commissioners fit this model.

Methods for adapting common services, including everyday health care provision, cognitive behavioural therapy, befriending programmes and activity-based supports, are available. With a bit of training and a lot more understanding of adults with autism, staff on both sides of this divide can improve their game and make universal services autism-friendly. It is worrying, however, that NHS learning disability services have been earmarked as a likely area for swingeing cuts in the near future, as adult mental health is already severely underfunded. This could wipe out potential gains for adults with autism, unless specialist services fill the gap.

It would be helpful for the guidance to clearly state that service provision in areas like supported housing, advocacy, adult education and employment support for people with learning difficulties, mental health needs and other vulnerabilities should also be open to those with autism. This step would prevent discrimination by existing programmes. The government’s advice note on autism for the Valuing People strategy goes a long way towards this goal, but has been widely ignored – for example, some Supporting People housing schemes welcome clients with autism, while others have exclusionary eligibility criteria. And simply opening the door is not enough to make access a reality. Staff will need training, and programmes will have to accommodate the particular needs of people with autism.

For policymakers and service providers, the Autism Act should be welcomed, and the guidance should be eagerly anticipated. Though there’s still a long way to go, today’s young adults with autism have benefited from great improvements in education and family support. They are becoming more aware of their access rights under the Disability Discrimination Act and Human Rights Act. This new legislation will clarify the obligations on local authorities and the NHS, providing a path forward that should greatly improve the quality of life for people with autism and their families.

Dr Mitzi Waltz is a lecturer in autism studies in the University of Birmingham’s Autism Centre for Education and Research (http://www.education.bham.ac.uk/research/acer/index.shtml) and the parent of a young man with autism.

Source:  http://www.publicservice.co.uk/feature_story.asp?id=13684



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