My oldest child is eight years old. He is funny, super-smart, and charming. He once made up a song about how much he loves me.
He has also recently been diagnosed with ADHD.
You see, ever since he was very young, I knew there was something different about him. I was just finishing my second year of medical school, and he was my first child. But I knew. In infancy, he stared at objects of interest with an intensity of focus that was mesmerizing. When he began to speak, he spoke eloquently (seriously!) and argued his points with logic well before the age of 2. He never joined in group activities, but observed them solemnly and seriously. He slept poorly. He had explosive, long-lasting, inconsolable tantrums about everything from transitions to meals to seams in his socks. He had severe separation anxiety at school drop-off, which lasts to this day. He had (has) exquisite sensory sensitivities. He remains a slave to routine and ritual (and reacts poorly indeed when things change). He can talk for hours about black holes and superheroes. He clearly loves his siblings and his parents, but all interactions must be on his terms.
I thought – I still think – that he has an ASD. Asperger's. It's him to a T.
I could write for pages and pages about my son and his symptoms and his birth and neonatal course and December birthday and GI problems and build my case to you – fellow physicians and mothers – as to why I am so sure that ADHD is the wrong diagnosis. But at the end of the day, in my mind, the letters don't really matter. All I want is someone out there to help us better parent our child. The way he relates with the world is not "neurotypical", that is for certain. But how can I help him, who he is, grow and thrive and make his way in peace and confidence in this world? My husband and I have done a lot which I think has been very good for our son. But we were at an impasse. We took him to the pediatrician because we were looking for help. Guidance.
So now we have this diagnosis. Maybe it is accurate, maybe not. I am truly not writing this as an argument one way or another for his actual diagnosis. The essence of my post relates to my own reaction to hearing the diagnosis. I just thought: no. Not that. NO. I would have accepted "ASD" – I suspected it. I may have accepted some kind of anxiety disorder. Or – no diagnosis! That's just who he is, and here's how we can help you. That would have worked. But ADHD… I absolutely balked. Why?
I feel that in popular media, ASD is portrayed as a diagnosis which is blameless. Autism support groups, parent groups, blogs, articles, and fundraising abound. There are supports for parents, and children can receive evidence-based treatment (at least in my province). We have specific screening tools in Ontario, for use at the 18 month well child visit, specifically to screen for ASD. And don't get me wrong – rightfully so. Early intervention works and should be promoted. Also, I'm NOT saying parents of children with ASD have it easy. Not at all.
Now I contrast with ADHD. I feel that ADHD is portrayed more as blame-able (i.e. on the parents) and less "real." ADHD is often the butt of jokes or widely derided as an "excuse" for poor behaviour. I do not know of any screening for ADHD that is done in routine well-child visits. I do not see articles or blogs about parenting a child with ADHD. I don't hear about ADHD research fundraising activities. I'm not saying they don't exist. But I do not think that they are as "out there" in popular media.
I am not a pediatrician, nor a psychiatrist, but I understand that both ASD and ADHD are considered neurodevelopmental disorders which arise through an interplay between genetics and "environment" (that lovely catchall for everything from prenatal exposure to substance X to pollutants to diet and so on). I do not think the medical community considers one or the other of these diagnoses to be the parents "fault." But I do think, that deep down (and I am ashamed to say this), I am afraid of my son being diagnosed with ADHD. Afraid of the looks. The blame. The rolled eyes. The label. Afraid of the consequences of starting him on medication – or not doing so. Afraid of possible misdiagnosis and its consequences. Afraid of grandparents finding out and having to deal with the inevitable questioning and doubt. Afraid that I will feel less sympathetic, more frustrated, less supported, more alone. Simply afraid.
I know that my child is who he is, despite any diagnosis or lack thereof. I know that one diagnosis is not "better" than any other. Diagnosis won't change who he is. I want to be clear that I am not saying I want or favour a certain diagnosis for my child. Nor am I implying any judgement of any of your children with these diagnoses, or you! Rather, I write to explore my own reaction to this situation, and to consider the reasons behind it, even though in doing so, I seem to have uncovered my own fears and biases.
What do you think of when you meet a child with ADHD? The child might be a patient, a niece or nephew, a classmate or friend of your child. How does that differ from your feelings when you meet a child with ASD? Are you more or less sympathetic? Understanding? Willing to forgive / accept / work with the child's behaviours?
I want to parent my child as best as I can. I want what we all want – I want him to feel loved, confident, and secure. I want him to thrive. I know that the letters won't change who he is. Despite my fears, I also know that the letters won't change who I see, as his mother: a very unique and special child with some incredible talents and some special challenges to work with. The question is: will the letters change what others see?