Should I continue referring to autism as a disability? This is something I’ve been thinking about for some time, eventually coming to a slightly controversial decision: Yes, I should. I want to make one thing clear: if you have autism and don’t identify as disabled that’s fine. I support you fully. But in terms of my own Asperger’s Syndrome (and the autistic children I work with) I feel the most comfortable using the term ‘disability’. I love having autism. I wouldn’t change who I am for the world, but defining myself as anything less than disabled would undermine the barriers I’ve worked hard to overcome and the issues I still face each day.

The person you see now might not seem obviously disabled. She can make jokes, look you in the eye, ask you about your day and doesn’t always start hyperventilating every time she hears an unexpected noise. What you don’t see is all the hard work that went into that. The countless sessions with support workers, autism specialists and psychotherapists. The medication I take every day. The practice journeys I still have to do every time I go somewhere new. The internal reprimands every time I flap in public or forget to ask you about your day even though I’ve told you about mine. The determination to ignore the feeling of white hot needles entering my eyeballs every time I look at an electric light and the feeling of rain hammering directly on to my skull every time I’m in a room where several people are talking at once.

When people don’t see this struggle, it’s hard for them to understand why I view autism as a disability. The may think I’m referring to myself as disabled because I want to claim benefits, or because I’m feeling insecure. When people do see this struggle (or at least, see the destructive behaviour it sometimes leads to) it’s hard for them to look me in the eye and continue treating me with respect. They may think I behave this way because I’m selfish or attention seeking. On the other hand, they may simply feel out of their depth.

The difficulty of both these scenarios has turned my life into a bit of a paradox. On the internet and during training sessions I talk frankly about my experience of autism. It’s my job. Yet during every day social situations I make an almost subconscious effort to suppress any autistic behaviour (rocking, flapping and avoiding eye contact ect). This effort is sometimes exhausting, yet it’s been ingrained in my behaviour for so long it would be impossible not to do it, an experience I’m sure many people with high functioning autism can relate to.

Recently I’ve noticed a shift in the language practitioners use to describe autism. ‘Autism Spectrum Disorder’ has now become ‘Autism Spectrum Condition’, ‘Pathological Demand Avoidance’ has now become ‘Exposure Anxiety’. The way autistic people experience empathy is now referred to as a ‘difference’ rather than a ‘deficit’ and the term ‘Asperger’s Syndrome’ has been gotten rid of altogether in favour of seeing every form of autism as part of one spectrum. Some of these changes are undeniably positive, the rest of them less so. I think replacing the diagnosis of PDA with Exposure Anxiety is a wonderful thing. After all, imagine how difficult it would be to get a job if you had to go into every interview and inform your potential employer that you had a condition called Pathological Demand Avoidance!

However, some of these changes in terminology are less positive. Members of the Asperger’s community (myself included) were outraged to find out Asperger’s Syndrome had been dropped from the DSM. What did this mean for us? Were we now considered neurotypical? Did we no longer exist? I believe service users that would have been diagnosed with Asperger’s Syndrome are now given the label ‘high functioning autism’. This seems like a pointless change to me, as before ‘Asperger’s Syndrome’ was dropped, most people would tell you Asperger’s is a form of ‘high functioning autism’. Besides, the label ‘high functioning’ has always been problematic in itself. What does it mean? I have high functioning autism, but according to the diagnostic criteria people like Carly Fleischmann and Tito Mukhopadhyay have low functioning/high support autism. Tito had written his first book by the time he was eleven and had it published by the time he was fifteen. Carly is a published writer too and has made several television appearances. These so called ‘low functioning’ individuals have already achieved more than most people with “high functioning” autism (myself included) can hope to achieve in a lifetime.

Labels are a necessary part of how we understand the world, but they can also be confusing, misleading and problematic. None more so than terms like ‘disabled’ and ‘disorder’, which sound very negative. I believe the shift in language from ‘Autism Spectrum Disorder’ to ‘Autism Spectrum Condition’ was a result of a more positive way of looking at autism. Proponents of the neurodiversity model suggest the differences in the brain that cause autism are a natural physical variance, no different from variations in race, gender or sexuality, which have also been pathologized in the past. I agree with this completely. However, when it comes to autism I think we should be changing our understanding of what ‘disability’ means rather than dropping the term altogether.

There are currently two models of disability: the medical model and the social model. The medical model looks at things from a purely scientific point of view; explaining any pain and discomfort a disabled person experiences as inevitable symptoms of their health condition and thus placing the blame on that person’s impaired body. The social model is much more positive. This model puts the emphasis on the social environment of the disabled person, explaining any problems they encounter as a result of their environment’s failure to meet their needs rather than a result of their body being impaired. In this scenario pain and discomfort are not inevitable because environments can (and should) be changed to meet the needs of the people within them.

I firmly believe in the social model. This means I do consider my autism to be a disability, but only because the majority of the world is not autistic and society simply wasn’t built with people like me in mind. Imagine if the majority of the world’s population was paralysed from the waist down and used wheelchairs. Everywhere there would be ramps, flat surfaces and low ceilings. In this scenario people who were able to use their legs would be considered disabled. They’d have back problems from bending over to avoid hitting their heads on the low ceilings. They’d be tetchy and anxious because they wouldn’t be aware of the need to exercise their legs. People would stare at them, whisper and make judgements because in this parallel world, people who can walk would be outside the norm and its human nature to fear what we don’t understand.

Apply this logic to autism and you’d get the same result. With the majority of the world autistic, I’d no longer have sensory issues because my environment would be tailored to meet my needs: the harsh electric lights and multiple conversations I described at the start of this article wouldn’t exist. I’d no longer have issues with communication because the majority of the world would communicate in the same way as me. I’d no longer feel tired and stressed because I wouldn’t be spending every minute of every day subconsciously masking my autistic behaviour. Autism would be the norm. In that scenario I guarantee that neurotypicals (people without autism) would be considered disabled. Their environment and the people around them would not be meeting their needs, and they’d need lots of extra support in order to navigate a strange and baffling world.

I will continue saying ‘Autism Spectrum Disorder’ instead of saying ‘Autism Spectrum Condition’. I will continue referring to my Asperger’s Syndrome as a disability, not because there’s anything about me that I view as wrong or would like to fix, but because my environment simply does not meet my needs. I’m likely to always need extra support in order to successfully navigate this strange, baffling world. Sadly, sometimes the only way to get this support is to frame your circumstances in the worst possible way.

Advertisements

7 thoughts

  1. Shortly after I read your post, my six-year-old son came up to me out of the blue and said, “I feel sorry for you because you’re so disabled.” I was totally shocked to hear him say this since I don’t describe myself this way (nor have I even discussed the term Asperger’s with him) and my mind went back to the post, but I just said, “How am I disabled?” He said, “You’re disabled by other people.” I said, “How? Like who?” He said, “Just people. Friends. It seems like they’re such a challenge for you and they’re hard for you. They make you tired.” There is no way he read your post but it was like getting a condensed child-sized view of it. I guess he and you are right.

    Like

      1. Yes, he is, but he still even surprised me with this comment at how much he’d picked up on! (And of course, how me not using labeling didn’t change reality or his perceptions). After talking with him about it I acknowledged that he was right, people are challenging for me, but it’s still worth it to me being around the people I care about. I was also concerned that he might worry that he would have the same difficulties (he doesn’t seem to have Asperger’s), but he seems to realize he and I have different challenges, and he is okay with it. Sure, it is fine if you quote him 🙂

        Like

  2. thanks 🙂 he sounds like an incredible child, to tell the truth I sometimes worry about passing my Asperger’s on to any children I may have, I just have to keep reminding myself that it’s the world that disables me, rather than there being something fundamentally wrong with me, and if a six year old can understand that then surely there is hope for a more autism friendly world 🙂

    Like

    1. Yes, it does give me hope for the future as well. He is pretty amazing and I have learned so much from him. I hope he is able to hold on to his compassionate views as he grows up. I worried about passing it on as well before I had him, but I told myself that if I did have a child with Asperger’s (or still do in the future if I have any more children) that I would probably be better equipped to understand and help him/her than someone without Asperger’s would be (based on my own childhood experience).

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s