Access for autism

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Are alcohol services meeting the needs of adults with autism? Alcohol Concern and the University of Bath are working to improve support for this client group and want to hear the views of practitioners, as Andrew Misell explains.

Read the article in May DDN Magazine

Andrew Misell is Alcohol Concern’s Director for Wales

There are around 700,000 people in the UK on the autistic spectrum – around 1 per cent of the population. When you’re on the spectrum, social interaction and communication – with all their unwritten rules and conventions – can be tricky. Reading the thoughts, feelings and behaviours of others can be a minefield. When you’re unusually sensitive to sounds, touch, and light, our world of constant stimuli and chatter can be a challenge. And when you add it all up, everyday situations can feel overwhelming.

In the face of all this, retreat into safer spaces and activities is attractive. Indeed, many people with autism do respond to the busyness and bother of the world by avoiding risky or unpredictable situations. This has led in turn to something of an assumption that they are unlikely to misuse alcohol. The logic goes something like this: if someone likes to be clear about where they stand, why start using a substance that makes everything foggier?

Initial research by Alcohol Concern, however, suggests that this assumption doesn’t match the reality of many autistic people’s lives. Although solid evidence is thin on the ground, a recent review by the charity of the current literature – as well as consultations with academics and practitioners – has highlighted a number of issues that alcohol services may need to address, as well as the need for more thorough research into the topic.

Alcohol Concern’s investigation has revealed that although people on the autistic spectrum do not appear, necessarily, to drink more than anyone else, that’s not the whole story. As with many other stressful conditions, there is evidence that some people with autism self-medicate with alcohol. There is a growing genre of ‘autism autobiographies’ and several of these have included accounts of the use of alcohol as a stress-management tool. Alcohol use has been found by some to be a successful autism coping strategy in the short-term, enabling them to manage or conceal autism-related difficulties for years – until the alcohol use starts bringing on its own problems.

If people with autism do drink (because of their autism, or for any other reason) there is some evidence that they are likely to have greater difficulty managing their drinking behaviour, and be more prone towards harmful drinking and alcohol dependence. Further problems seem to be encountered at the point at which someone with autism is in need of support to manage their drinking.

The obvious initial obstacle is whether that person feels able to enter the treatment system. Substance misuse treatment centres can be quite chaotic environments, with a fairly constant flow of clients and their companions, some of whom may be disruptive and noisy. Even if a client with autism succeeds in making and attending an appointment, some alcohol treatment approaches – such as those relying on analogies, abstract thinking, or a sense of social self – are likely to be unsuitable for them. The need to be understood is often quite deep in people with autism, and if it becomes clear early on that a practitioner does not properly understand autism, the therapeutic relationship may stop before it starts.

Following from this initial research, Alcohol Concern is now working with the Centre for Applied Autism Research (CAAR) at the University of Bath to explore whether people with autism do access (or seek to access) alcohol treatment services; what happens when they do; and how alcohol services could be made more autism-friendly.

The ultimate aim is to work with services to make the necessary adjustments to promote equality of access for people with autism to alcohol support when they need it. Indeed, one of the most positive things that has already come out of this project is the idea that it may be possible for services to adapt their approaches to play to the strengths of autistic clients, i.e. to engage with them in ways that make the most of their traits.

As part of the project, Alcohol Concern and the research team at Bath are inviting anyone working in substance misuse services to complete a short questionnaire. Whatever your experiences have been – even if you’re not sure whether you’ve encountered clients with autism or how you’d recognise the condition – they’d like to hear your views. The questionnaire shouldn’t take more than 15 minutes to complete, and is on the Alcohol Concern website: www.alcoholconcern.org.uk/autism

All information you provide will be anonymous, confidential and securely stored.

Contact: Andrew Misell at Alcohol Concern amisell@alcoholconcern.org.uk, and/or Prof Marl Brosnan at the University of Bath’s Centre for Applied Autism Research (CAAR) M.J.Brosnan@bath.ac.uk

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Matt’s story

For many people whose autism is undiagnosed, alcohol can act as a successful coping strategy – until the alcohol becomes a problem in itself. Matt Tinsley shares his story.

‘The chief aspect of my autism which resulted in extremely heavy use of alcohol to cope was a near constant sense of anxiety. I also was socially awkward and discovered alcohol turned me into a much more relaxed person. Of course, I was unaware of my autism at the time and it’s only in retrospect that I can understand why it worked so well.’

Alcohol also helped Matt to function in the workplace and develop and maintain relationships. It meant he was less affected by sensory stressors and so helped manage his anxiety.

‘Sensory problems which I have now such as loud noises and certain textured clothes being very uncomfortable were numbed to a certain extent by drink. Being overwhelmed with information when being given instructions was also not a problem when drinking, as I felt able to retain the information. This may sound like the opposite to the way alcohol would affect NTs [neurologically typical – people not on the autism spectrum], but I think that is the key to its success for me, until it became life-threatening – it made me feel and act in a much more neurotypical way.

‘Alcohol enabled me to do jobs where anxiety might have been crippling – working in an environment with constant contact with the public. Instead, despite being technically drunk, I was very efficient at my jobs and was able to cope doing such jobs for 17 years.’

However the point comes when the level of alcohol required for functioning becomes unsustainable and serious health issues occur. For Matt, that was severe liver damage, collapse and certain death if he continued to drink.

Some services have a requirement that clients be ‘dry’ before they are accepted for treatment. However for some – possibly undiagnosed – autistic people, for whom alcohol may be their coping strategy against extreme anxiety, it may be the case that they cannot access support as the removal of the alcohol may make them incapable of leaving the house. More awareness of the potential of autism to result in problem drinking is needed in alcohol support services, and there also needs to be recognition of what to look out for.

‘The signs to look for that a person with an alcohol problem might also be autistic could be unusual eye-contact, special interests (is there a certain level of ‘nerdiness’ in what interests the drinker, or do they have one subject at which they are expert at?). Is their use of language (grammar and syntax) unusual in any way, does their conversation sound odd or pedantic? Also, they may just present themselves, as I did, with the conviction that they are autistic and have just discovered why they are like they are. This should definitely be paid attention to, and not dismissed.’

For support on all aspects of living with autism visit www.autism.org.uk

Asperger Syndrome and Alcohol: Drinking to Cope?

By Matthew Tinsley and Sarah Hendrickx, published by Jessica Kingsley Publishers.