On my official diagnosis letter it states that I have autism spectrum disorder (aspergers). Since receiving that I’ve used all of the descriptions in my little word poster above (here on the blog and in real life) to tell people about my diagnosis. Struggling to decide which one to settle upon I’ve scoured the internet to see what other autistic people with a similar level of functioning are using to describe themselves. That search is tantamount to opening a can of worms, all over the internet people are arguing over how we should describe ourselves, and our children, loved ones and friends who have been diagnosed with autism spectrum condition.
Can I describe myself as autistic when my autism isn’t obvious, when on a good day I could pass for neurotypical? Is aspergers different to autism, and therefore is calling myself autistic an exaggeration?
Describing myself as autistic feels easiest. It’s shorter, trips of the tongue easily, and is a familiar word for most. However when I use it I feel a little fraudulent, like I’m not allowed to use that term in case I offend those more seriously affected.
Aspergers is accurate, but it’s being taken away as a diagnosis replaced with autistic spectrum condition, it feels weird to use a dying term. Also aspergers can be seen as mild autism, which it is compared to some peoples autism, but it doesn’t feel mild. It affects me all day, every day. It’s constant anxiety, sensory sensitivities, processing difficulties, chaos. It’s me in the middle of a tornado, blown around and around until I can take no more. I want people to understand that, and in doing so to understand me.
That said I do like and use Aspie,more often with other Aspies, like a collective community term.
On the spectrum feels vague, after all as I’m so often told ‘we’re all on the spectrum somewhere’. Therefore if we’re all on the spectrum describing myself as on the spectrum seems totally futile.
Autism feels like the easiest choice. Followed by further explanation of how having autism affects me. This presents challenges, I hate describing myself as high functioning, I’m average functioning, certainly no genius. Plus if high functioning is used then so is low functioning and that seems horrid. Do we really need to assign a functioning level? I would prefer to explain my individual situation without using judgemental labels.
Then I have to consider use of the word autism, am I autistic or do I have autism? Personally I’m comfortable with being described as autistic, being autistic is part of me, intrinsically linked to much of my behaviour. It shapes the way I view the world. I don’t need to separate myself from it by saying I am a person with autism.
Ultimately I think autistic people and their carers and loved ones should be able to use whatever terminology feels most comfortable to them without judgement. That understanding, caring and compassion are way more important than labels. We certainly need to move away from labels that carry judgement but beyond that whatever feels right is right.