So here goes, taking the bull slightly by the horns now by opening up discussion on the use of identity first language from the point of view of a neurotypical parent of an autistic child. Many NT parents and professionals prefer and use the term ‘a person or child with autism’ while the majority of autistic people prefer to be called, well ‘autistic’ or ‘autistic people’, and I think we should listen to that and here’s why…
My blog is called the learning curve because having an autistic child has been just that. Being a parent is a learning curve full stop but being a parent to a child who is labeled with a SEN means you have to learn fast and about law, rights, services, and how best to support, nurture and understand this child who has a different processing system to yours. Many of my family either identify as or are diagnosed as autistic, but having an autistic child means you travel in tandem with them and have to be an advocate for their rights before they are able to for themselves which gives you a whole different perspective and opens up your eyes all the time to new ways of seeing things. It is a huge responsibility. You get things wrong, all parents do, all that separates a good parent from a bad parent is the ability to listen, learn, be flexible and change when needed.
I am fortunate as I have my younger brother to turn to and I am able to learn through his experiences. He was diagnosed with Aspergers Syndrome at 27 and identifies as an Aspie, and he is one of the coolest people I know. However he was very much misunderstood as a child and suffered greatly as a result, he still bears the scars. I am 4 years older than him and we are close, his treatment affected me greatly and when it became clear that I had an autistic son I knew I wanted things to be different for him. I wanted my child to be understood, supported and have the sense of identity and belonging that my brother did not find until later in life.
I have never seen autism as a negative thing, neither do my son or my brother as far as I know although, it does come with its problems. Apart from anything else being misunderstood, not having your needs met and not being heard is bad for anyone and because we live in a NT world it is pretty much a given you are likely to experience these things to a much greater degree if you are autistic rather than NT. But it doesn’t have to be that way does it? The world can change to reflect the diversity within in it whether that be neurological, physical, sexual, gender, race or whatever, and that starts with the seemly small things, like respecting how people wish to self-identify.
I hope as my son grows up he will be listened to and his self-identity be honoured. I admit I have at times seen him as an extension of myself, but that has changed as he has grown, and I now respect his individuality and separateness and celebrate it every day. For the same reason I choose to listen to the growing movement of #actuallyautistic people who are paving the way for a more accepting, all-embracing world for my son.
Out of respect for their wishes and for my son’s future self, my blogs, Facebook and twitter accounts will all use first person language from now on and I have been over older blogs and edited where necessary. Pieces I have written for others can not now be edited by me but they will stand as a reminder that you can not erase the past but you can choose to move forward from it, attitudes evolve and change and so do people, it is a perpetual process. Respecting the way autistic people would like to be described is just one step in the process of creating a society that it is truly accepting to all.
*Permission has been obtained from the people mentioned in this blog.