I was introduced to my new support worker recently, and felt a little worried when she described herself as a ‘Recovery Support Worker’. Did she think autism was something I needed to recover from? Was she going to try and cure me? While I would like to live without the anxiety that often comes with Asperger’s Syndrome, I am never going to get rid of the Asperger’s itself. Even if I could, I’m not sure I’d want to. Asperger’s Syndrome is responsible for both the way I think, and the way I see the world. That makes it a big part of my identity.
I raised these issues with my support worker, and she quickly put my mind at ease by explaining three different recovery models:
The Clinical Recovery Model
This is the kind of model generally used by doctors in order to treat an illness. The goal of the clinical recovery model is to erase any trace of the illness, and a patient is generally judged as “recovered” when all their symptoms are gone. Sadly, there are some practitioners that use the clinical recovery model to treat autism. From special diets and oxygen canisters to bleach and exorcisms, there are a lot of “cures” out there designed to rid people of the symptoms of autism. Not one of these cures has been conclusively proven to work, and some (such as Leon Edwards solution of sodium clorite and hydrochloric acid) can be very dangerous. In my opinion the fact that we are still searching for a cure is damaging to the self-esteem of autistic people, as it implies there is something fundamentally wrong with us that needs to be fixed. Autism is not an illness; it’s just a different way of being.
The Social Recovery Model
This recovery model is generally used by the NHS, social workers, and some support workers. The goal of the social recovery model is to integrate the patient back into society by forcing them conform to its rules. The patient is generally judged as “recovered” when they partake in all the things we consider as normal, ie: they get a full time job, get married and raise a family. The social model is probably the most commonly used model to treat autism. Many times in my job, I have heard parents say that their child is behind in school, but that doesn’t matter because they are focused entirely on improving the child’s social skills. This is what they see as important to their child’s recovery, but the child themselves may not share that value. Temple Grandin has noted this problem. Several times, the mothers of intelligent, talented autistic boys have come to her in despair because their child ‘will never have a girlfriend’. Despite the child’s success in other areas, they are not considered “recovered” because they don’t conform to society’s expectations. Grandin suggests that nurturing special interests, talents and intelligence is just as important as developing social skills when caring for autistic children, as it is often these interests and talents that will help them find work when they grow up. Besides, immersing themselves in their special interests makes people with autism very happy.
The Personal Recovery Model
The personal recovery model is what my support worker uses. The goal of the personal recovery model is to help the patient become empowered and happy (the word ‘recovery’ can be misleading here and should perhaps be exchanged for ‘acceptance’ or something similar). While this process is different for everyone, what’s central to it is the patient learning to live with and embrace their disorder. The patient is generally judged as ‘recovered’ when they seem happy and fulfilled, even if the symptoms of their disorder are still there.
Upon having the personal recovery model explained to me, I realised I’d been using it for months before I even met my support worker. I started this blog in an attempt to live with and embrace my autism, rather than trying to “cure” it, suppress it or pretend it wasn’t there. “Coming out” as someone with Asperger’s Syndrome was also a big part of this recovery process. I still have bad days. Day’s when I hate myself for being different to ninety nine percent of the population and another breakdown seems imminent. But on the whole I consider myself to be well on the road to recovery.
I consider the personal recovery model to be the most effective when dealing with autism and Asperger’s Syndrome. The problems associated with the clinical model should be obvious. Autism is not an illness. It cannot (and in my opinion should not) be cured. However, that doesn’t mean that people on the spectrum can’t learn to cope with the stress and anxiety associated with the condition and go on to lead full, active lives.
On the surface, there don’t seem to be any problems with the social model of recovery, as the end goal of this model is to integrate people back into society. When it comes to autism, what I don’t like about the social model is that it places neurotypical expectations on people who are not neurotypical. My support worker has come into contact with many practitioners who use the social recovery model. One problem she highlighted is that a big part of the social model involves going back to full time employment. Given recent austerity measures and the governments emphasis on “hard working individuals”, patients being treated with the social recovery model are often pushed to return to work before they are ready, resulting in a relapse of the health issues that forced them to take time off in the first place.
Working full time, having a romantic partner and material gain might be important to neurotypicals, but these areas don’t necessarily match the values of people on the autism spectrum. Recently I was offered a high paying job based in Leeds. The office I worked in caused me a great deal of sensory issues, which led to panic attacks, melt downs, and a general feeling of insecurity about the work I was doing. When I bought these issues up with friends and family they’d say things like ‘but it’s very well paid’ or ‘now you’ve got a proper job’ as though wealth accumulation and a place in mainstream society were somehow more important than health and happiness. Eventually I quit my job in Leeds and went back to being self-employed on £2:75 an hour. That whole experience has set back my recovery, but it has also taught me that my values don’t necessarily match the values of the people around me, and conforming to societal expectations isn’t going to make me happy.
The personal recovery model (by name and nature) is a personal experience, and I cannot say how it would work for everyone on the autism spectrum. For me, the recovery process began when I started to talk openly about my Asperger’s Syndrome. A more recent aspect of it (which I hope my support worker will assist me with) is working out what values are important to me, and how I can incorporate these values into my life. Like most people with Asperger’s Syndrome, being creative and having a strong sense of individuality have always been important to me. Another thing I value highly is my close relationship with my family. I’m sure I have plenty of other values I’m not even aware of yet. I still have a lot of work to do, but I’m very excited about my recovery process. I’m working with someone who isn’t trying to cure me or change me. they’re simply trying to make sure I’m happy.