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The importance of identification

A few weeks ago, a mother asked me if she should tell her autistic son about his autism. Then last night, another parent asked if she should pursue an autism diagnosis for her son after his paediatrician raised concerns about ‘labelling’ him. My response to the latter question seemed to resonate with a number of people, so I decided to expand it into this blog. But when I contemplated exactly what I wanted to say, the two questions seemed intrinsically linked, so I am going to try to tackle them together here.

As an autistic mum of three autistic boys, I ask you to consider the questions — ‘should I pursue an autism diagnosis for my child’ and ‘should I tell my child about their autism diagnosis’ — without prejudice if you can. For many, the word ‘autism’ is burdened by stigma, misunderstanding, and stereotype. But how would you feel if I posed the same questions to you using different examples?

Would you seek a diabetes diagnosis for your diabetic son?

Would you tell your daughter about her cultural heritage?

Of course you would, because you and your child need to understand how to recognise and manage their needs, and because you and your child need to have accurate information about who they are so that their needs are met.

Of course you would, because cultural heritage is a vital component of identity, of defining and understanding who we are.

Of course you would, because the ‘label’ of ‘diabetic’, or a recognition of cultural heritage, helps to define your child’s experiences, their identity, and their needs. It offers them, and those around them, understanding into what they need to remain healthy and safe and happy.

Of course you would, because you understand that the ‘label’ doesn’t confine who they are: it isn’t the totality of their experience. Just as the label ‘parent’ helps to define you, it does not confine you to being only a parent, the label ‘diabetic’ or ‘culturally diverse’ defines an important aspect of your child’s life without confining them to only that label.

And of course you would pursue a diagnosis if your child had unmet needs arising from unidentified diabetes. Of course you would tell your child about that diagnosis because their health and well-being is at risk if you did not.

I’m not suggesting there’s a direct parallel between autism and cultural heritage or diabetes. The analogies are far from perfect. For one thing: unlike diabetes, autism is not a disease. It is, however, not unlike cultural identity: both are necessary and critical elements in embracing our authentic identities, and both are genetically inherited. But the point is not the exact analogy anyway, it’s more to bring our collective attention to the reality that so many of us approach autism with our own stigmas and prejudices. We would never dream of abandoning a diagnosis or withholding it — or, indeed, withholding information vital to understanding identity — if less stigmatized ‘labels’ were in play.

But actually, even the diabetes analogy is more fitting than you might think. Unrecognised or unidentified or unacknowledged autism may not be immediately life-threatening, but it does have a profoundly detrimental effect on well-being, and research shows that a lack of acceptance of an autism diagnosis leads to increased risk of depression. Consider this: Autistic children are around 30 times more likely to consider suicide than their typically developing peers, and lack of acceptance – feeling different, feeling isolated, feeling alone, feeling broken and wrong – is a huge factor in that statistic.

So, actually, we are talking about the health of our children. We’re talking about their happiness, their ability to be themselves, to be invited to be accepted as they are, in all their unique and wonderful glory. We’re talking about their potential to experience the sense of well-being that is a basic human right.

I don’t raise the suicide spectre to scare you, although honestly, those figures petrify me. I’m giving you impetus. I’m giving you the why… why it is so important to identify and acknowledge your child’s autism if such an identification is warranted.

If your child is autistic, then they are autistic. Whether you ‘label’ them or not, whether you actively seek to have them identified or not, doesn’t change whether they are autistic or not.

Your child was either born autistic — or not. And the identification process won’t make your child autistic if they were not born so.

Not ‘labeling’ your child won’t mean they aren’t autistic, it won’t make them any less autistic, it won’t neutralise or cancel out their autism. It simply doesn’t work like that.

So, the question is simply whether the ‘label’ is helpful or not. Or, preferably, if ‘identification’ (which is more value-neutral terminology) is helpful or not.

I would argue very strongly that it is.

Your child (and you as their parent), have a right to accurate, quality information that will allow you and your child to understand their needs and to advocate for those needs to be met. How can you support your child, and how can your child learn to self-advocate, if you – and your child — don’t know fully, holistically, profoundly, who they are? How can you and your child feel inclusion and acceptance if you deny them (and yourself) access to the community who share their neurocognitive processing?

Self-knowledge is the cornerstone of well-being, resilience, and self-determination, but you can’t have self-knowledge if you’re denied access to a part of who you are. How tragic, to deny a child their identity from a place of fear, with the vain hope that by not acknowledging, by not naming, by not recognising a fundamental part of that child – a significant part that makes them who they are – that that part might disappear or change or wither away.

If they don’t already, your child very soon will understand that they are different than their peers: respect that knowledge, embrace it, give them complete access to their identity: it is theirs after all. And autism is integral to who we are, it is fundamental to our identity… there is simply so much potential for damage in denying anyone so intrinsic a part of their identity.

But, no doubt some of you will protest that even if you don’t approach the word ‘autism’ with prejudice and stigma, that prejudice and stigma nevertheless exists. Labelling your child, you may argue, risks exposing them to a world that shuns and slurs autism as a tragedy, that misunderstands autism and excludes autistics. By giving your child the autism label, you may worry that you set them up for failure in a world that neglects them, ostracises them, refuses to accept and respect them.

That is true, to some extent. But as parents of autistic children, as the people charged with changing the world for our children, as the people who should love our children as they are and not as we imagined or expected them to be, it is simply not good enough to be passive. As parents of autistic children it is our mission – our raison d’ȇtre – to begin the social movement for change, or (to use a hackneyed phrase) to be the change we want to see. If we tacitly participate in the stigma, if we perpetuate it, if we ignore it and don’t attempt to challenge it, then we have indeed set our children up to fail.

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