I was talking to a relative about autism and a family we know that have clearly autistic children but have not sought a diagnosis as they ‘don’t want to label my children.’ This comes up all too often and it is problematic. Very problematic. The idea of autism being a ‘label’ and this somehow being a negative thing horrifies me. Autism is not a label, it is an actual thing. Giving a child a diagnosis can be incredibly helpful and open up new worlds of identity and self-knowledge.
I have met a lot of autistic adults who went through the ‘we don’t want to label you’ thing and as soon as they left home they went and got themselves a diagnosis because they knew they were autistic and had been waiting for a diagnosis for years.
And on the topic of ‘diagnosis’, that is actually quite fraught and is strongly suggestive of deficits. I don’t know how to address this. As it stands autism is listed in the Diagnostic and Statistical Manual of Mental health Disorders (DSM 5) but many autistic people – me included – see our autism as an attribute, a cultural difference and an identity, not a diagnosis so much as a way of being but that is beside the point.
Identity is important for everyone but particularly for autistic people and other neurodivergent folks. Our neurotype is a key part of what makes us who we are. Saying ‘I don’t want to label my child’ is denying us a key part of our identity.
The ‘label’ issue is suggestive of autism being a negative thing, a curse or a burden. But denying us our identity is not helping us. Having the ‘label’ enables a child – and an adult – to understand ourselves better and to connect with like minded peers. It also enables use to access supports and services which will make our lives easier. Without the ‘label’ we cannot access these things.
Not wanted to ‘label’ is ignoring the fact that an autistic child actually IS different and getting through life without their identity is going to be harder than navigating life with that oh so important part of their identity, autism.
I went through my childhood without a ‘label’ because an appropriate label simply didn’t exist. It was very hard for me to accept my autism because it was an alien concept and I didn’t want to be ‘broken’ but when I did accept it it was a liberation. I loved my ‘label’ because it helped me understand myself so much better.
And not ‘labelling’ is actually actually quite foolish simply because a child – or adult – IS autistic whether they have the label or not. Worrying what others think about a child being autistic and judging them is likely to happen whether they have the label or not. You wouldn’t say to a woman “I’m not going to label you as a woman because people might be sexist.” Likewise saying ‘I‘m not going to label you as autistic because people might be ableist” isn’t very helpful. If a person is autistic then they are autistic. The word ‘autism’ can be applied for not – it makes no difference. If someone is autistic then they are autistic regardless of how you describe it.
I think the ‘not wanting to label’ approach is possibly based in fear and denial. I also think it doesn’t help autistic kids and in fact is a big barrier to inclusion. Having the ‘label’ can empower and encourage autistic kids and help them to accept and celebrate themselves. It also allows access to a neurodivergent peers and friends. The autism ‘label’ should not be seen as a negative but as a means of promoting pride and positive self-knowledge. I love my various neurodivergent ‘labels’ as they form the core of my identity and who I am.