Written in 2019

340 days ago (at the time of writing) I was diagnosed with ASD – Asperger's Syndrome. At this point I should say that I'm in the UK, where we use the ICD, not the DSM. The DSM IV included both autism and Asperger's Syndrome as distinct diagnoses, and now the DSM V (which supersedes the DSM IV) has grouped these under the umbrella term of autism. The ICD still includes both diagnoses as separate conditions.

Whether you agree with this or not, it's worth noting the change in language to put all ASDs under the same umbrella. It's also worth noting that the autistic community have been using the acronym ASCs instead. This seems to be a recent move but the reason behind this is mainly the connotations of the language. “Disorder” implies, well, disorder. A word which carries negative connotations. It implies that our condition (for that is what it is) is bad, wrong, strangely different, to be suppressed. “Condition”, on the other hand, hasn't got those negative connotations (or at least not in the same way), so the move towards this nomenclature makes a lot of sense.

There is also some debate around the use of “functioning” labels to denote the degree to which an individual has impairment in the main areas of, for want of a better word, functioning. Support based labels, as opposed to functional labels, can be useful when explaining to non-autistics where you, or someone else, needs help. Describing ourselves and other autistic people as “high functioning” or “low functioning” as a blanket term blends our strengths and weaknesses into one muddy grey label which actually does nothing for our self esteem, our understanding of ourselves (much, much harder than any non-autistic person could ever imagine it would be) or our interactions with others.

Yes, “high functioning” and “low functioning” can be useful when describing an autistic person to an non-autistic person because it fits the non-autistic paradigm. They think they know what autism is and they are very reluctant to change their minds, even when confronted with walking, talking evidence to the contrary. Those labels let them know what to expect, to a certain degree, and that's an incredibly useful tactic to use with non-autistic people.

Neurotypical people don't like change, or anything which confronts and confounds their personal paradigm, so you have to be very careful when introducing anything into their lives which might upset their routine and their understanding of the world around them.  Sound familiar? Perhaps we're not so different...

But we are, and we always are. Autism isn't something that just affects your ability to communicate, to understand other people, to live independently or to have a social life. It doesn't just affect your ability to find and keep employment, or your ability to enjoy life, or to relax. It IS part of who we are. All of us. Not just the ones who can tell you this to your face.

We need understanding and acceptance, and that has to start with listening to the autistic community and asking us what we think will help. Among us are counsellors, trainers, business owners, psychologists; people who just want to be heard.

So, why do I say I have Asperger's?

I say I have Asperger's because that's the language I was given at diagnosis, and it's the language that society knows and (sort of) understands. Grammatically, it also sounds right to say you have Asperger's rather than you are Asperger's. When it comes to the idea of having autism, rather than it being a considerable part of who you are (i.e. being autistic), it just doesn't fit, as I discussed above.

I say I have Asperger's because if I said to people I am autistic they would not understand, and would find it hard to believe me, given the general public perception of what autism is. But is it fair that I have to use language I don't identify with for the sake of other people's comfort? No, of course not, but a huge aspect of being autistic and blending into society is having to make other people comfortable, not to upset them or challenge them, or to present them with something they aren't willing to accept.
 

There is definitely a lot of work to be done around the public perception of what it means to be autistic and although that is happening, there is still a very long way to go before society changes their understanding and starts to listen to us, even in the medical community. In the meantime, it's easier for me to say I have Asperger's than to say I am autistic but this doesn't preclude people from disbelief and challenging that statement.
 

Some of the reactions I've had after disclosure are:

• Aren't you just going to use that as an excuse to do things you don't want to do?
• But you don't seem like you have Asperger's, you wouldn't know if you didn't say. You get on with people
• You shouldn't label yourself. You're not like the other people with Asperger's I know, they're all off their heads
• Everyone's on the spectrum somewhere
• You shouldn't say you're different, you're not, you're just like everyone else
• Well you not liking busses gives us all permission to not do things we don't like
   

Unsurprisingly, these were all statements made by neurotypical people. I have challenged some of these comments (when I thought I might be listened to) and will continue to do so, but not to the detriment of my own mental health, which is frankly shaky at the best of times. Below are the responses I wish I had given to those statements (in order – the fourth response is a paraphrase of my actual real life response to that statement)

• It's not an excuse. It's a reason. You can call them excuses if you want to, but that's a huge misunderstanding and an invalidation of me as a person
• I don't seem like I have Asperger's because I am a fantastic actress and should have a shelf full of BAFTAs and Oscars. The amount of effort that goes into that mask is immense and it drains me mentally and physically. I get on with people because it's slightly less stressful than not getting on with people. If you seem friendly, people leave you alone
• I label myself because it is my prerogative to do so. That label is my identity, which I did not have for 35 years and I'm not going to give it up because you don't think I should label myself. Please respect my decision to identify the way I want to. You don't think I have it because I don't fit your perception and you also can't see the inner struggle I have every second of every day. And please don't make statements like that about autistic people. It's dehumanising and offensive. I'm not like those people because I am not those people, we're all different. Not all neurotypical people are the same, so why should we all have to be the same?
• Everyone's on the spectrum of humanity, but not everyone is on the autism spectrum. You're either autistic or you're not, and within that designation you can be at wildly different places on the sub-spectra of autistic traits. Saying that “everyone's on the spectrum somewhere” invalidates the experiences of autistic people and takes away our voice
• I am different. I will say I am different because it is objectively true. You don't get to decide how I feel about myself and dismissing my reality and my identity invalidates my struggles, my experiences and my triumphs
• W. T. F. I have no response to this except for confusion

Even when I try to explain these things, people don't want to listen and change their minds. They don't want to understand and they don't want to be confronted by something which is at odds to their existing knowledge and worldview.

So, for the time being at least I will have to continue to say “I have Asperger's” as well as “I am autistic” when it is safe and reasonable to do so.  Society isn't ready to change and accept differences, and presenting myself as less threatening makes my day to day life easier than if I also had to deal with trying to explain what autism is to everyone. I am still a person, I have a life, and although I'm different to neurotypicals, I'm still just as valid.