A Plea to Diagnosticians

Dear Diagnosing Professional,

See those parents sitting in front of you? Yes, the ones with the shadow behind their eyes, the furrow on their brows, the ones whose worry is a palpable aura surrounding them as their eyes dart between you and their child, sitting on the floor at their feet. See that father who sits with his arms crossed, leaning away from you as if to escape what you’re about to say? See that mother who is eyeing you with a mixture of hope and fear?

They know what you’re about to say. They know you saw it the first time they introduced their child to you, the first time they watched you watch their child flap and spin. They saw the way you looked at them and at their child, when they told you about their child’s language delay, love of lining up their soft toy collection, fascination with the ceiling fans. You saw it immediately, their child’s Autism, and today – after you’ve tested and assessed – is the day those parents know you are going to tell them that their child is Autistic. Or, more probably, that their child ‘has Autism Spectrum Disorder’.

I wonder if you think that the most important job you have today is to ‘break’ this news to this family. I wonder if you understand what your most important job really is. You see, the way you tell these parents that their child is Autistic is likely to colour these parents’ perception of their child for years to come. And by extension, the way you tell these parents that their child is Autistic will likely predetermine how that child experiences their Autism for years to come. That responsibility weighs on your shoulders: your language now, your words, will in large part determine whether this child flourishes and has a happy childhood that is filled with love and acceptance and respect. Or not.

You see, although you diagnose autism using the DSM 5 or the ICD-11 which frames Autism through deficits, and although your view of Autism is (by the very definition of your profession) medicalised and pathologised, you are now faced with a choice… On the one hand, you can choose to draw on your extensive medical knowledge to talk to these parents. You can choose to explicate why their child has a ‘disorder’ by listing all the developmental markers the child hasn’t met, all the ways they don’t meet arbitrary standards of ‘normal’, all the things they can’t do, all the things that make them different, and challenging, and limited, and ultimately less.

You won’t use those words, of course – you’re more sensitive than that – but you will tell these parents about their child’s social-communication difficulties, you will reference their ‘restricted interests’, you will list their behavioural challenges. You might be tempted to conjecture what this child will or won’t achieve, what potential will remain unfulfilled. Ultimately, you might think it your role to offer these parents a taste of the ‘reality’ that will become their lives because of their child’s Autism. And no doubt, you will offer these parents advice on therapies and interventions and next steps to encourage their child towards the goal of ‘typically developing’. No doubt, you’ll tell these parents about the promise of Early Childhood Intervention, about a ‘window of opportunity’ that will close if they don’t ‘act’ immediately, about which therapies and interventions are evidence-based to reduce Autism symptomology.

And if you do that, you will very probably condemn that family – that child – to months and years, possibly even decades, of denial, rejection, exclusion, isolation, stigmatisation, and pain. Because those parents will take your medical expertise and apply its implications to their child. They will look at their child’s Autism as something wrong, something broken, something needing to be fixed and cured. They will be haunted by what might have caused their child’s Autism, what they could have done differently, what they did wrong to deserve such a fate. They will, in all likelihood, sacrifice their child’s childhood at the altar of hours and hours of therapy which will, these parents hope, make their child less Autistic, less different, less noticeably Other.

And their child? Well, they will hear you. They might not understand every word you say, but they will understand your tone. They will perceive that you are ‘breaking bad news’, they will hear you say that you are sorry. They will read in every way that you communicate, that what is discussed here and now – this thing called Autism that seems to scare their parents so much, this thing called Autism that you seem to find so regrettable and such an unhappy circumstance, this thing called Autism that they have – is wrong, sick, shocking, awful. And, remembering that many Autistics are hyperempathetic, this child will receive all of your nonverbal messages, and they will understand that it is something in them that makes their parents weep, prompts their father to scoop them up in his arms, hoping to protect them from themselves.

And, long after your appointment, that feeling will remain. And it will be reinforced as this child internalises their parents’ perceptions. They will interpret their parents’ attempts to make them less Autistic as a sign that their Autism is wrong, broken, needing fixing and curing. And that child will, inextricably over time, come to hate their Autism, and (because they understand in a way that you and their parents do not seem to) since their Autism is intrinsic to who they are, they will come to hate themselves. They will loath that part of themselves, and learn to mask it, at great cost to their mental health and self-acceptance. They might become depressed. And you will blame their Autism. They might become aggressive. And you will blame their Autism. They might develop crippling anxiety. And you will blame their Autism. You will blame their Autism without once thinking that just perhaps the view of Autism that you gave to that child’s parents at this vital moment right now might have had such long-lasting ramifications, and that you might be at least in part to blame, and not Autism at all.

But. There is another hand. Because, on the other hand, you can offer those parents a different insight that comes with acceptance, respect, joy and hope.

What if, instead of ‘diagnosing’ this child with Autism Spectrum Disorder, you ‘identify’ this child as Autistic, so that they don’t automatically see their Autism as an illness or sickness that needs treating, and so that they understand their Autism is an integral part of their identity?

What if, instead of listing this child’s deficits, you talk about their strengths first and foremost, so that they understand that they have gifts to offer that are valued and valuable?

What if, instead of pathologising this child’s restricted interests, you use positive language like ‘passions’, so that they don’t perceive of their wonderful pastimes as anything other than fulfilling?

What if, instead of telling those parents that they should prepare themselves for the possibility that their child might never say the words, ‘I love you’, you tell them that their child absolutely loves them and will communicate that love, every day, even if it’s not with words?

What if, instead of worrying that this child will never speak, you instead tell their parents that there are many, tremendous ways of communicating non-traditionally, that will allow their child to express themselves throughout their lives?

What if, instead of urging haste (and possibly inadvertently inciting panic) with talk of an early intervention window, you encourage these parents to pause, to process, to reflect? What if you persuade them to take the time to assess which therapies would really benefit their child, right now, so that their child has the chance to be a child, and not spend their childhood on a conveyor belt of therapy in a normalising factory?

I’m not saying ignore the challenges… these parents have come to you because there are challenges, so to ignore them would be disingenuous. I’m not saying don’t recommend any interventions… some will be vital to help this child feel happy and safe in a predominantly neurotypical world. But – just for today, when first impressions count so much – why not introduce this family to Autism in a way that is respectful, and positive, and accepting?

Just think… what if, instead of instilling a fear of Autism, you give these parents a lasting gift, the gift of the knowledge that to love this child – this wonderful, unique child – is to learn to love their Autism?

What if, as part of this appointment, you introduce these parents to the idea of Neurodiversity, so that they understand their child’s Autism from this first moment as a natural biological variance like any other diversity?

What if, as part of this appointment, you invite these parents to listen to adult Autistic voices so that they can appreciate what amazing, awesome lives so many Autistics live, if they are allowed to live as authentically Autistic? What if the resources list you give to these parents is filled with such uplifting, hopeful Autistic voices, so that these parents experience optimism because of their child’s Autism, not desolation because of it?

Because if you make that choice, the choice to inspire and enrich and elevate, you are instrumental in making this child’s and this family’s life unquestionably and immeasurably better, happier, more satisfying and enjoyable. Because if you choose Neurodiversity, you offer the hope of inclusion, community, and identity. Because if you choose to focus on strengths right now, you choose to set this child up for the success they deserve, you set them up to flourish.

So… The choice is yours. The responsibility is yours. Here. Now. With these parents and this child. And as they reluctantly turn their eyes to you to receive the information you are primed to give them, as they look to you for knowledge and guidance and wisdom and support, I ask you: how will you give it?

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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.