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"But surely you don't want to label your child?": Diagnosis, "labelling" and misconceptions.

It has been 2 years since my son received his diagnosis of autism (with a demand avoidant profile). Although I'm not usually one for anniversaries, this has been a cause for reflection on my part, especially as our lives have changed so dramatically in that time.

I have also met several parents lately who are worrying about "labelling" their child (or perhaps more accurately, are being made to feel like they are labelling them by getting a diagnosis). So the issue of diagnosis and the question of "labelling" has been at the forefront of my mind. My comments here are, of course, my own perspective from my experience as both a mum and a social worker - and I recognise that all families are different and have to make their own decisions about diagnosis.

Often in the parenting world it seems that everyone has an opinion about what you're doing (or not doing!) with your child. In my experience, this is never more true than when you are on the diagnostic pathway for autism. The chances are that you will be met with some of the following comments: "but all children have things they find hard, it doesn't mean they're autistic" and "s/he doesn't seem autistic at all" (especially if your child is good at masking!) and most infuriatingly: "but surely you don't want to label them?".

This type of response is problematic for many reasons. It implies that parents are over-worrying or somehow jumping on the "diagnosis bandwagon". Several parents I have spoken to say this has contributed to them holding off seeking a diagnosis as they worry that, if no one else can see it, it might be in their head. It needs to be understood that by the time parents arrive at the point of seeking a diagnosis they have had a long, exhausting and stressful journey. It is not something people do lightly or without good reason.

These comments also suggest that by getting a diagnosis you are somehow "making" your child autistic - that if you didn't seek a diagnosis they wouldn't be autistic. As a sensible friend (who's child is also autistic) reminded me: "your child is exactly the same the day after their diagnosis as they were the day before". They have not suddenly "become" autistic. You are now simply better equipped to understand them and to find the best way to support them.

Sadly these comments about labelling also imply that finding out you are autistic is something to be avoided, that it is a bad thing. This is indicative of the lack of understanding about autism in our society, and of the negative attitude towards neurodiversity, which contributes to the low self-esteem and poor mental health outcomes that many autistic people face. Rather than seeing it as negative labelling we should see it as gaining understanding about our children. Another wise friend of mine (I have several!) once said to me that our autistic children will be labelled anyway, even if we don't proceed with a diagnosis. It will simply be the wrong label - of being naughty, rude, challenging, lazy etc. People will not understand them and will make judgements about them that are not true. This is not the something that any of us want for our children.

As a social worker I met many adults with autism who were not diagnosed till later in life and their insight is vital in this discussion. Those who I spoke to talked about a huge sense of relief when they were finally diagnosed - of finally understanding themselves and being able to explain their autism to others. Many enjoyed accessing social groups for autistic adults, where they felt accepted and free from the confusing social norms of neurotypical people. They told me they wished it had happened when they were younger. Of course I'm not say that this is the experience of all autistic adults - there will be those who are not happy with their diagnosis - but the message that I heard from a lot of adults was one of relief.

For us as a family, getting a diagnosis enabled us to learn how to support our son more effectively because we understood his needs. We have been able to find a "tribe" for him - and it has been a source of great delight to see him flourishing and making friends in the Dungeons and Dragons community, in the lovely groups run by Bristol Adventurers' Guild (see my blog about this here). We have also been able to meet his educational needs more appropriately, not continue to force him into a system that does not work for him. Hopefully, in time, it will also enable him to understand himself better - helping him to be comfortable with who he is and to recognise and be proud of all that he has to offer.

Some useful reading

Diagnosis and children

Diagnosis and adults:

Article about implicit and explicit attitudes towards autistic adults:

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