It’s Autism Acceptance Month and we need more words.
NB: I first wrote this blog post in 2020. I have made some small changes to update it in 2024 but most of what I wrote still feels very relevant especially as more and more adults with lower support needs are diagnosed, we definitely need more words.
I have had the privilege of working professionally with many Autistic people. Some have official diagnoses from medical professionals and others have self identified (not that this makes them any less valid!) I am regularly in awe of their intellectual abilities and have no doubt that their work is enhanced by seeing the world non-neurotypically. I also know that for many of these people being ‘on the spectrum’ has brought specific challenges both personally and professionally. Many have told me that they have been misdiagnosed or have suffered significantly from depression or anxiety. Many have been bullied and have had to battle against a system that is not set up to accommodate their needs and this has impacted their ability to succeed. For many, identifying as Autistic has been a turning point, providing validation for how they feel and how they experience the world. Some have felt able to reduce the amount that they mask in day to day life and feel more able to live their own authentic lives. The A word has a power and for some of these people this word has provided the validation or explanation they have long been looking for. Their experiences are valid and their neuro-diversity should be celebrated.
As Artistic Director at Peer Productions, I work with Autistic people not only in our Peer Employment Pathway Programme (PEP), which is specifically for young adults with learning disabilities, but also in our Peer Actor Development Programme and our staff team. For those Autistic people in PEP, their Autism combined with their learning disabilities impact their day to day lives significantly and the opportunities for them to access the adult world of work, relationships and independence is significantly affected by their Autism..
I am also a mum to two Autistic girls aged 9 and 14. Both are non-verbal and are considered to have severe learning disabilities. For both girls their Autism dramatically impacts their ability to lead their lives, build relationships and communicate with others. Neither will ever live independently.
When I look between the many brilliant Autistic adults I have met and my wonderful, lovable Autistic daughters, I am struck by how different they are. Yes there are similarities and I have definitely gained an insight as a mum of Autistic kids into sensory integration challenges by reading descriptions from more capable Autistic people who are better able to describe the experience than my daughters - although I can never know for sure if what they describe is the same as what my children experience. While I acknowledge that some brilliant Autistic adults were non-verbal as children, the majority were not. The chances of either of my children being able to develop their communication skills in adulthood to this extent is highly unlikely.
The words we currently use are not sufficient. Autism is such a broad ranging spectrum condition that encompasses so many different lived experiences that one word does not seem sufficient. We no longer usually use the word Aspergers (for many very good reasons) but that leaves us with ugly words like high and low functioning, high and low support needs or verbal and non-verbal when in reality non-verbal is a hugely wide-ranging category encompassing a very broad range of cognitive abilities and lived experiences. Severe, moderate and mild all seem unhelpful.
However capable an Autistic person may appear, this doesn’t make it true that, just because we might share a trait with an Autistic person, ‘we’re all a bit Autistic.’ We are not. You can no more be ‘a bit’ Autistic than you can be ‘a bit’ pregnant. Many Autistic people are understandably frustrated to be told, ‘But you don’t look Autistic!’ Autism is often an invisible difference, condition or disability. But equally sometimes you can tell by looking. Being out in public with my daughters who move in unusual ways and make unusual sounds, often receiving unwanted and unkind attention, we feel very visible indeed. I can often spot other Autistic people who present similarly to either of my girls at ten paces. This is obviously not true for all Autistic people.
As a person who is not Autistic (although for the record I was recently diagnosed with ADHD so I do identify as neurodiverse) it is not appropriate for me to tell Autistic people that they cannot or should not use any specific label that feels right for them. But as a parent who wants to advocate for my children in the clearest and most effective way, language is failing me. I think it might be failing all of us.
I propose that we could find language which more specifically speaks to individual experiences in the same way that the LGBTQIA+ or Queer community has. Although not everyone likes these terms, the Queer or LGBTQIA+ umbrella acknowledges the similarities and differences between people and then, under this umbrella, we have more nuanced words or labels for specific experiences. As a bisexual cis woman I may try to be an ally for trans people but I don’t seek to speak for them or equate my experience to theirs. Within the trans community there are an increasing array of labels and these enable people to express their experiences and to be seen, heard and respected. If someone tells you they are non-binary, for example, although we recognise that not all non-binary people will have the same experience, those words help the person listening to more accurately understand the person with whom they are communicating.
I do realise that being Autistic and being Queer are different from each other, but words have power. For children like mine, their Autism is disabling. It severely impacts and limits every aspect of their lives. For other people their Autism, although it may impact their lives profoundly, they would not identify as disabled. Using one word as a catchall for such a broad range of identities, lives and experiences is reductive to everyone.
We need more words. We need better words.
