One thing which autistic advocates often experience is certain parents of autistic kids saying to us that ‘You don’t speak for my child.’ There are a few meanings to this but the main one is the implication that an autistic advocate has something called ‘mild autism’ as opposed to the child’s ‘severe autism.’ Advocates – apparently – have no shared experience with ‘severely’ autistic children. As such everything we say about autism is wrong and based in some kind of privileged position of being ‘high functioning’. This is all sadly very wrong and does not help autistic people – kids, adults, advocates – any of us.
I do need to include this caveat: I do not think that the allistic parents who tell me I don’t speak on behalf of their child are the enemy. I think we are all on a journey to knowledge and discovery and I would invite those parents to read my words and the words of other autistic people and see if parts of what we say resonate with them and help them along their own journey of autism knowledge.
I will start by saying that I actually don’t speak on behalf of anyone’s child. I don’t speak on behalf of anyone at all. I speak on behalf of Yenn Purkis in the hope that what I say will resonate with others and help them. I have no authority to speak on behalf of others and neither does anyone else. This also begs the question of who actually DOES speak on behalf of the autistic child? Presumably the allistic parent accusing me of doing this probably thinks that it is OK for them to speak on behalf of their child. To my mind the child being able to express their own wishes or learn to do so in whatever way that may entail is better than anyone speaking on their behalf.
I want to talk about functioning labels. These are things like ‘high functioning’, ‘low functioning’, ‘mild autism’ etc. Functioning labels are not part of the diagnostic literature for autism. They are an add-on and not a very helpful add-on at that.
I attended a presentation by the wonderful autistic advocate and academic Jac Den Houting. Jac was speaking about functioning labels. They put up two slides. Each listed a set of attributes that autistic people commonly have. The first slide were things that would be captured in the idea of ‘low functioning’ and the second things which would be described as ‘high functioning’ attributes. Jac went on to say that both slides were descriptions of things which Jac themselves experienced. I thought this was a fantastic way to address the issue with functioning labels. One person could have a whole range of attributes which fluctuate and change over time. I know that I have some experiences of being non-speaking, being catatonic, having major ‘meltdowns’ and yet I usually get the ‘high functioning’ label. Basically the functioning labels are unhelpful at best and are often damaging and traumatic. The functioning labels are essentially meaningless.
Giving children functioning labels dooms them to either having no expectations that they will achieve much or of being denied access to assistance and support due to them being ‘too high functioning.’ Just because someone is doing well at school does not mean their mental health is going well or that they are coping. The ‘mild’ autism label needs to be confined to the dustbin of history as it means people miss out on supports and that they are expected to act like an allistic person.
I saw a humorous meme once that talked about having spicy autism as opposed to mild autism. I really like that and my take on it is that I have spicy autism with a side order of curly fries! Seriously though, one of the issues with the functioning and ‘mild’ labels is that they suggest a deviation form a ‘norm’ of being. Autism is seen to increase in severity the further it deviates from the allistic ‘norm.’ That simply isn’t how autism works. We are not defined by how close to allistic we are. We are valid as we are, as our own beautiful Autistic selves. We are all different and we cannot be plotted on a map of how close or far from ‘normal’ we are.
Often the people telling me I don’t speak on behalf of their child have kids who do not use verbal speech. The ability to speak is bound up with significant stigma around autism. This baffles me because there are so many effective Augmented and Alternate Communication (AAC) devices which give autistic people – and others – the capacity for communication. Some people will not get an AAC device for their child because they are told it will stop the child from speaking. I would say that is really unhelpful and will almost certainly lead to a very frustrated child being denied the access to communication. Verbal speech is not the pinnacle of communication. Communication is about being understood and understanding, whatever that may look like. There are some great autistic advocates who use AAC. Now I wonder, do these advocates get told that ‘you don’t speak on behalf of my child.’