One of the things I have taken time to reflect on over the summer period is the six months that have elapsed since our son was diagnosed with Asperger’s Syndrome/High Functioning Autism/Autism Spectrum Disorder (take your pick). Last year proved to be a big one in many unexpected ways for us, but the ASD diagnosis was definitely the biggest change we saw.
Twelve months ago we sought help from health professionals thinking our son had an anxiety disorder. Six months after that, in June, we were told that the consensus among a psychologist, speech pathologist and a paediatrician was that the best explanation for his difficulties was ASD. I remember my concern about ‘labels’ during the initial phase of diagnosis. However, this concern very quickly melted into the background once it became apparent that a diagnosis could set a whole lot of things moving that would ultimately help everyone.
The questions are:
Are we better off since the diagnosis? Are we parenting our son with more clues? Is he happier? Are we?
Yes to all of the above.
Do we think of him as only his diagnosis?
No, of course not.
So what has changed, and how is it for the better?
Firstly, we are parenting him differently and the changes in our son are very evident. He is happier, more relaxed and more able to make sense of each day. He still has trouble with some things but we have much more of an insight into why that is and what we can do about it. The specialists we have been working with – psychologists, speech pathologists, occupational therapists and a paediatrician – have provided us with lots of useful strategies to support our son and make our family life run more smoothly. It is not perfect, but no family is. We use visual schedules and social stories to help our son plan his time and organise himself. We use prompts and questions to help him learn the reciprocity that underlies conversation, and we have done lots of work on his motor organisation and skills for pre-writing to prepare him for school. What’s more, the school he is going to knows of his particular needs and will take extra care of him because of this.
In short, we do things slightly differently and it works. He is happier because he feels better understood and we are no longer trying to parent him as if he is someone else. Instead, we have got a better idea about the ‘operating system’ or ‘frequency’ his brain runs on and so we no longer experience the mutual frustration that comes from behaving as if the more common rules apply.
Which brings me to the main insight that this experience has given me. This concerns the issue of ‘labels’ and the reservations we and others have had about the whole issue of ‘labelling’ a child. Six months into this new version of normal life I have come to the conclusion that concerns about ‘labelling’ might actually be a bit of a furphy.
I have learnt that the decision to go for a diagnosis in and of itself does not necessarily mean you are ‘labelling’ your child. People tend to use this idea of labelling to signal a concern that a diagnosis means that you are stigmatising your child, or putting an arbitrary limit on who they are, or reducing their human liveliness and complexity to a blurb in a diagnostic manual. These concerns would be valid – if they were true.
In our experience, a diagnosis has had the opposite effect – it has opened up our child to us as we can now understand him better and, in his case, his flourishing and growth has only increased since we decided to have him formally assessed for ASD.
To be sure, medical labels have been used to disempower and limit people. They can be terribly reductive when misused or used to replace actual engagement with the person and life’s irreducible complexity.
I see this mirrored in my life as an English teacher. My heart always sinks when students decide to diagnose a character, as if that explains them. As if a diagnosis, once made, means there is nothing more that needs to be said and no further thinking is required.
Yeah, Hamlet, he was like, a depressive, right? He just needed to get over it? Or Emma Bovary? You know, she was like a shopping addict? What she needed was a divorce and a good SSRI. Imagine if all of literature treated human experience in this way. Macbeth? Neurotic pride in achievement and power. Anti-social personality. Emily Dickinson? Agoraphobic. Social anxiety disorder. And don’t even get us started on those Brontë sisters.
The image purveyed by the popular media is of gung-ho psychologists busily diagnosing every socially awkward and brainy kid as ‘on the spectrum’ and press-ganging parents into pursuing expensive treatment. From the waiting times for each appointment it was clear to us that the last thing some of these clinics need is more patients.
Our experience contrasted this popular image. At every stage in the diagnostic process the professionals we were dealing with left it entirely up to us whether or not we proceeded with a formal assessment. At several junctures we were given explicit feedback that we did not have to proceed. The entire process was very respectful and we were assured repeatedly that we should continue to value our son in all his complexity and brilliance and quirks and that he is still an individual. Yes. Of course.
Years ago, I was one of the ‘don’t label him’ people. Back when our son was 2 going on 3, the staff at the early learning centre he was enrolled in expressed ‘concerns’ about his development. I had many meetings and conversations with them about his ‘progress’ and it was clear to me that they were dissatisfied.
At the time, and at the request of the early learning centre, we took our son to a paediatrician. This guy said he saw nothing amiss and it was probably ‘just temperament’. We, of course, were delighted to hear this and the whole episode was buried in my consciousness; that is, until we were part-way through the diagnostic process this second time around. During the diagnostic process those memories surfaced again – and this time I had a different take on my then-resistance to what I saw as normative standards being used to construe my son as a ‘concern’. He only wants to play with one type of toy? So what? Focus is good. He doesn’t draw representations of people? Well, neither do a whole bunch of adult artists. He has not moved beyond parallel play? Well, he comes from a family of people who like solitude. And that hand-flapping gesture he does? It’s just excitement.
I did not understand what the childhood educators were getting at. But I knew that I was always going to bristle at any hint of people trying to funnel him into a narrow, normative box.
I feel the same now about norms that are cultural rather than medical as I did then. But I feel differently about worrying about ‘labelling’.
The litmus test is this – he and we were having a hard time. Now, we are having a better time. What have we told him? That he had a lot of worries and that we are helping him with that. He seems satisfied with this explanation and it has the added benefit of being true.
Japanese ASD expert Yuko Yoshida in her delightful book Raising Children With High-Functioning Autism and Asperger’s Syndrome: Championing the Individual, says it all in her title. Her argument about the ‘don’t label’ view is that to not diagnose and recognise your child’s distinct reality and difficulties is also, in a way, a failure to respect them as individuals. To simply avoid dealing with a child’s difference, to not engage with their specific needs and learn what best supports them is to abandon them. The ‘don’t label’ stance can inadvertently throw a child back on their own limited resources for trying to make their way in what is for them a confusing world. Done right, diagnosis is actually recognising difference.
For us, undergoing the quite arduous process of a formal diagnosis engaged our minds and focus. We were prompted to learn about ASD and our son’s particular ‘presentation’ and his particular needs. And it is the particularity that counts. A diagnosis is not a person, any more than a map is a place. But, if you want to know a place, in all is glorious particularity, you are going to need a map to get there.