Personal stories

Why I’m rejecting the label of ‘disabled’ that’s come with an autistic spectrum diagnosis

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I have recently been diagnosed with an Autistic Spectrum Disorder (ASD). But, not only have I received this new label from my diagnosis, I’ve automatically picked up another label too… I am now classed as ‘disabled’. Now, I recognise my diagnosis, but does that really mean I’m ‘disabled’ just because I have been diagnosed with ASD? By definition it seems it does, but as far as being dis-abled, I don’t consider myself to be. So I feel conflicted when I have to answer the ‘disability question’ on forms and when registering for services. The first time I had to tick yes or no, I found the wording and question confusing.

The government defines disability as “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.” I interpreted the definition as lacking in empathy and compassion; reflecting the view that there’s a ‘normal’ way to be and if you can’t be that, then it’s negative. As ASD is classed as a disability, I should technically register as disabled. But, I don’t believe that I am impaired –mentally or physically– and I can’t say I’ve lived a life greatly affected by disability, so I found the definition problematic. I thought if I tick ‘no’, would this be considered dishonest? And would I be limiting my access to any support I might need?

Since my diagnosis, with all the forms and registrations I’ve had to fill out, I started to get the impression that I’m limited in what I can do because of it. I felt like my diagnosis was pinning me down and defining me. I wasn’t seeing any positive connotations surrounding being ‘disabled’. I felt as though I was classed as it as different and ‘less than’ anyone else, unable to do what they can; separating me from ‘normal’ society.

I realised this had no benefit for me and wasn’t true. I could choose to accept this new label and see myself as dis-abled; or I could reframe how I was looking at this. If I were to be defined by my diagnosis, it would suggest to me that I had nothing to offer and couldn’t do certain things. My diagnosis hasn’t really impacted or changed my life that much; but I do have access to support that I didn’t have before.

I don’t consider myself as being hindered to a greater extent than other people, I just do things differently. I see the world differently. And perhaps that’s actually an ability that could be celebrated?! So I choose to see myself as having neither a “physical nor mental impairment” because I don’t see it as constructive to focus on what we can’t do. What If we focused on what we can do instead?

It was strange to be diagnosed with ASD; realising how I am and behave are in accordance with it. I didn’t think there was anything I did differently because it all felt normal to me. I don’t believe it’s all I’m defined by, but it’s a part of who I am. I’m not separate from my behaviour associated with it. The diagnosis has helped me understand myself better, giving me more understanding and insight into who I am, and I don’t see anything bad about it.

It also helped me understand others’ views too. When I first read about associated traits, I realised “Oh, that’s why people saw me as this or that”, in relation to how I behaved. I get concerned that being classed as ‘disabled’ –and having the focus on what a person can’t do, rather than what they can– means less access to opportunities, because of the way other people might view me. I’ve watched documentaries about people with a similar diagnosis to me who are trying to get a job and being turned away. I’m seeing their behaviour as them doing things differently: which is normal to them. Shouldn’t that be accommodated for? Why should they try and ‘fit in’ and meet set ‘norms’ when they have their way of doing things anyway? What if it were as simple as “Oh, you can’t do this? That’s okay, we’ll do *this* to make it easier for you.” Inclusion.

Before I volunteered with a charity which helped people with learning disabilities get into employment, I had the impression they would be completely different to other people, and I expected to see unusual behaviours. But what I saw were the similarities. I realised that so many of their difficulties tended to amount from being a ‘square peg’ trying to fit in the ‘round hole’ that society had created for them. I spent time counting money with people who struggled with Maths; showing them how to add and multiply; and teaching them how to enter values into a spreadsheet, but I’d let them do the things they were comfortable with, at their own pace. It was important to me I helped them on their own terms. You can only teach someone in ways they understand.

To me, any idea of separation between people isn’t necessary: even being classed as ‘autistic’ or ‘having autism’, defined as a mental impairment or disorder. Sure, categorising people is often seen as the easiest way to understand, because you’ve defined ‘it’ and its characteristics. But doesn’t that also risk limiting a person to the definition? Focusing us on what’s ‘wrong’ with a person, rather than what’s right?

ASD isn’t really a disorder to me. It’s not an illness or a condition to ‘have’. It’s another way to function in society. Yes, there are certain things that I find less easy than other people to do, but I can also do and see things differently to those people –and that might just be an advantage. So before you accept any of the labels that you’re given throughout your life (whether that’s disabled, socially anxious, shy, or something else) just think about how owning that label is serving you and where it’s focusing your attention. What could be a more helpful perspective for you to take?

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