The controversial person first language debate

This is a topic that I have been debating writing a blog post on for a while but I always put it off because I know how much of a controversial topic it is within the autism community. However, I now feel the time has come to write it in as sensitive a way as possible. As always, on this blog, my views are my own and I don’t claim to represent anyone else on the autistic spectrum so please accept that the following views are mine alone. I do not mean to cause offence to any of my readers.

Spend more than ten minutes in an online autism community forum or Facebook group and you will more than likely come across a fierce debate, usually but not always between a parent of an autistic child and an autistic adult, about the importance of person first language. Person first language teaches people to recognise the individual first so they are a person with autism, not an autistic person. There are plenty of occasions where I have seen autistic people reprimanded online for referring to autistic people rather than people with autism, causing fierce debates where they vigorously defend their right to refer to themselves in the way they want to. I can understand both views, hence why I use some person first language on this blog because I never know what views my readers take. I can understand how, as a parent, receiving a diagnosis of an autistic spectrum condition for your child is life changing, even if it has been suspected for a while. Parents go through all sorts of emotions when dealing with the news that their child has autism-grief, denial, anger and finally acceptance and the journey to acceptance is often a long and hard one. Given this background, I can totally understand why the parent of an autistic child would want to separate autism from the rest of their child’s personality. I can totally understand why their point of view is that their child is their child first and autistic second. I also know there are lots of training courses advising all sorts of professionals who work with people on the autistic spectrum to use person first language because it’s seen as more dignified and more humanising. I agree with the principles of person first language for a lot of physical conditions which are separate from the person and can be brought under control and treated, if not completely cured, by medication or surgery. I work with children with epilepsy and would never refer to them as epileptic, purely because a lot of the medications they are on are labelled as anti epileptic drugs and as I was told on a MENCAP bank staff training course on epilepsy and person first language once, “we’re not anti the person-we’re anti the seizures”. In instances like this, I completely understand why person first language is the most dignified and respectful choice.

However, I rarely use person first language regarding autism in my own personal life and neither do most autistic people I have met. We refer to ourselves as autistic. Some people use words such as “Aspergian” but I choose not to purely because it sounds like an alien species! To me, there is one big flaw in advocating person first language for people with autism. It is denying our truth.

Autism affects the way we think and perceive the world. It is not the whole of who we are but it is too significant a part of who we are to dismiss it as “just an add on”. There are lots of situations that have happened in my life that I believe have been down to my Aspergers. There are also lots of situations that I believe I would have probably read in a completely different way if I did not have Aspergers. Aspergers has not made my life easy but it has made me very determined too. It has caused me to have a lot of self doubt and very fragile self esteem but it also brings a lot of positives. I do not know what my life would be like if I did not have Aspergers but I also don’t think I’d want to know. Yes there are other parts of my personality that are separate from my Aspergers but to deny that Aspergers has had an impact on my personality development would be foolish. Aspergers is not a physical ailment like a back injury or arthritis. It is not something that can be isolated from the essence of who we are as people. It is our neurological makeup and, as such, alters the way we perceive the world. When I was younger and I’d just found out about my Aspergers, I used to say, “Every little part of my body is Aspergers, even my fingers and toes!” It was a child like way of expressing that Aspergers is too big a part of who I am to be isolated from my personality. I think a big reason why people on the autistic spectrum dislike person first language in regard to autism is because the majority of people without autism tend to have negative and stereotyped views of what autism is and how it affects people. I have heard autistic people being referred to as having achieved in various situations and circumstances “despite having autism”. Autism is seen by so many people as being a hindrance. What about if people achieve BECAUSE they are autistic, rather than despite it? A lot of people on the spectrum dislike person first language because they believe it links in with the cure debate. I am actually not so sure that this is the case-I think a lot of non autistic people use person first language towards people with autism with good intentions. However, the important thing is that they themselves are not autistic. Telling someone who is autistic that they cannot refer to themselves in the way they feel most comfortable doing is denying them their own identity.

There are, of course, people on the spectrum who also prefer to use person first language and that is their choice. The key word is choice. People should be able to choose how to refer to themselves. You may not understand why someone wants to call themselves autistic rather than refer to themselves as having autism or vice versa but please acknowledge that it is their choice and respect that.