What’s in a label or why I struggle with ‘I don’t want to label my child…’

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.

7 thoughts on “What’s in a label or why I struggle with ‘I don’t want to label my child…’

  1. This is an incredibly important topic. You don’t give a person an ASD label – it is, as you say, what a child/adult has. You wouldn’t refer to any other condition e.g. diabetes, depression etc. as a label & deny the person what they need e.g. insulin, anti-depressants just so you can say they don’t have that condition. Acknowledging your child has ASD (even before the official diagnosis) is essential to getting your child the best supports you can.

    When our original peadiatrician dismissed my concerns I saw another peadiatrician who referred my son for an ASD assessment. When I rang the original peadiatrician to convey this news he said ‘what label would you be happy with?’ as if I was searching for something – I wasn’t I just wanted to find out what was going on so we could help our son.

    Too often I’ve seen parents delay addressing the issue because they don’t want ‘to label their child’ & in so doing they deny their child important supports, sometimes with horrendous consequences e.g. a child reaching their teenage years & having suicidal ideation due, in the most part, to not knowing or understanding who they are, feeling ‘weird’ & not having a sense of belonging.

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  2. I was reading an article, last night, about a man from Toowoomba whose great-grandfather was Chinese (no, not the horrible one). He said that growing up, he knew that his great-grandfather was Chinese but it wasn’t something that was talked about outside the family. This man said that he was “happy as Larry” about it. I felt the same way when I learnt that I’m autistic, and I say, in this respect, racists, sexists and ableists have a lot to answer for. And in my eyes, a parent who doesn’t tell their child they’re autistic is the same as someone who claims that they didn’t know their grandfather’s origins if they knew he was Chinese.

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  3. Just some typos:
    ‘Diagnostic and Statistical Manual of Mental health Disorders (DSM 5)’ should be ‘Diagnostic and Statistical Manual of Mental Disorders (DSM-5)’
    ‘enables use to access supports’ should be ‘enables us to access supports’
    ‘Not wanted to ‘label’ is ignoring’ should be ‘Not wanting to ‘label’ is ignoring’
    ‘not labelling is actually actually quite foolish’ should be ‘not labelling is actually quite foolish’
    ‘can be applied for not’ should be ‘can be applied or not’
    ‘saying ‘I’m not going’ should be ‘saying “I’m not going’
    ‘access to a neurodivergent peers’ should be ‘access to neurodivergent peers’

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      1. R. I have previously asked Yenn if it was ok to note any typos & the answer (to my recollection) was that is was ok. As Yenn has liked your comment R. it seems this is not now the case. I thought I was being helpful in identifying typos, so they could be corrected and the product could be the best it could be. Of course the typos don’t mean the article can’t be understood and it was not at all my intent to suggest they would. I would prefer to send the typos to you directly Yenn rather than put them in a comment to your blog – is there a way I can do this so that this information goes to you alone? Alternatively I can just not identify the typos at all.

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      2. R. I understand ableism is discrimination or prejudice against individuals with disabilities – is identifying a typo ableism? I can see that it would be if Yenn has a disability in relation to writing but Yenn is a published author (many times over) with a Masters degree and a prolific blogger so has literary skills of the highest order. For this reason I thought Yenn would really be ok with typos being identified as the typos could then be corrected and the end product improved.

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