My eight year old is collecting diagnoses like it’s going out of fashion. We’re up to five (with a sixth in contention). He has confirmed diagnoses of autism, dyspraxia, dyslexia, dysgraphia, anxiety, and potentially has ADHD. All these long, scary words and acronyms … piled on a little boy who just wants to play with his Lego. Teachers find the listed challenges daunting, but can’t help but smile while they meet the sweet, kind, funny and very intelligent kid that all these labels have been stuck on. How did we collect such a list, and what good does it do us and him to have this collection attached to him? And what’s it like living across the associated “support” communities – are other communities just as crazy and divided as the autism one I came to love (and sometimes loathe) …?
This is how we got here: First came the autism, anxiety, and dyspraxia diagnoses, along with ADHD, when he was about four or five years old. All those diagnoses were courtesy of my older son’s developmental paediatrician and diagnostician – someone who we have huge faith in as a well-established and well-respected person (and lecturer) in her field. She’s known us and worked alongside our family since I was pregnant with my now-eight year old; she knows him better than most medical professionals would their patients.
Over time, especially with the revelation that he might have dyslexia, the ADHD diagnosis was increasingly questioned: the behaviours typical of a child severely struggling with classroom activities that involve reading and writing, and of a child who has autism and thereby sensory issues going on, make more sense in light of those other two diagnoses rather than necessarily as indicative of ADHD. With me so far? Good, let’s keep going.
The public system doesn’t pay for diagnoses of dyslexia and associated learning disorders. It really, really should. But it doesn’t. An educational psychologist and his developmental paediatrician – both publicly funded – said he had dyslexia but they weren’t allowed to diagnose it. So we had to pay the private sector to find that out for us (this process sets families back an average of about $900). Along with dyslexia, that told us he also had dysgraphia (that was hardly a surprise though – still, nice to know for sure).
In my effort to get my head around all these extra “dys’s,” I started asking for book and website recommendations and joining support groups, most especially around the topic of dyslexia which was the major daily challenge he was facing that I was otherwise unprepared for (god knows I was very well prepared for the autism!). After a couple of useless books, and questionable support-group advice, I was getting that sense of deja vu (all over again). It was just like the initial wading into the autism community: Woo is alive and well in dyslexia-ville, and there are plenty of people insisting they’ve found the only real way to solve the issues and insisting it’s going to cost your family’s life-savings but you gotta do what you gotta do … right? Cause what kind of parents wouldn’t bankrupt themselves on the advice of that person they’ve just met on Facebook. Oh and, just like the fanatics in the autism community, plenty of people in the dyslexia community will tell you that the dyslexic mind is a superior mind and something to be celebrated – this attitude needs a little further comment, so indulge me a little further here.
Having autism doesn’t make you better than someone who doesn’t have autism; autism is just the name for a common set of behavioural and developmental characteristics, that on the whole make life quite a bit more challenging and difficult than if you didn’t have those challenges. It’s not a “gift,” it’s a label, and a label that’s criteria has changed quite a bit over time too. The dyslexia community similarly has a vocal set of people who think dyslexics are better people, rather than just people who fit into a particular set of criteria about the difficulties they face. The attitude is complicated and supported by the fact that to get a dyslexia diagnosis your reading difficulties cannot be first explained by a low level of intelligence – to have dyslexia you have to be clever enough that your intelligence level does not have explaining force for the difficulties. And so you get all sorts of genius examples thrown at you of those who have had autism or dyslexia (or both – Einstein gets thrown around a lot) and have done astounding things – not in spite of it but because of it. Hallelujah!
Here’s the rub though, I still have to get my “obviously-destined-to-be-a-genius” through his school days, alongside his teacher. I still have to worry over his very limited diet associated with his sensory issues. I still have to help him with everyday tasks because of his dyspraxia, help him read basic signs and instructions his peers can read, support him through the misery of being teased by the unkinder peers, help him make and keep friends where others seem to do it effortlessly. Help society to understand his challenges and not put him in the too-hard basket. And I have to do all that on a limited budget, and with limited time in each day. What these labels really give me that matters, is more ideas of how to help him, more access to relevant supports at school and in the community, and more understanding (and if I’m lucky, compassion) from a school system and society that isn’t made with him in mind. Whatever autism and dyslexia and dyspraxia and anxiety and ADHD and dysgraphia “mean” in some esoteric sense and endlessly-debated discourse, what it really all means to me is this:
My little boy needs extra help. But he’s still my little boy. He’s uniquely him, and I love him endlessly and always will. Sure, he’s overwhelming on paper, and he has more than his share of fancy diagnoses to his name, but he’s still an eight year old playing under a pohutukawa tree in the front yard, looking forward to Christmas morning.
And on that note I wish you all a happy holiday season too. May every diagnosis your child receives be a helpful one towards support and advice, and may the communities you join in the search for that help be a little less woo-tastic in the year head.