To Label or not to Label…

For a long time, I procrastinated about diagnosing my son with autism. I hoped that (with enough effort and personal dedication) I could raise him like men I had heard about. Men who lived happily unaware of their poor social skills. Married fathers, furthering science and fondly referred to as “Aspies”. I was nervous about ‘labelling’.

Early on, my reluctance to diagnose him was reinforced by therapists who explained his strong eye contact and joint attention ruled him out of the diagnosis. Later my hesitation escalated to acute anxiety, as I listened to paediatricians and child psychologists lament the amount of ‘over-diagnosis’ in the community. I didn’t predict his five-year-old, daily, irrational (sometimes window-smashing) tantrums and by then, I’d become so invested in my need to protect him from discrimination that referring him for a diagnosis felt like a betrayal.

In the end, my son’s inability to cope in primary school and my need for more help from therapists changed my position.

When I consider those early years, the thing that stings most is just how many doctors and therapists not only told me that my son was not autistic, but would also finish assessments with an informal comment like “I think parents are over-anxious these days” or “teachers are intolerant these days – kids just aren’t allowed to be characters anymore” or “as soon as teachers get a whiff of funding…” and I listened to them, because I wanted it to be true.

If you are reading this website, you might be wondering whether your child has a developmental delay. I strongly recommend you trust your intuition and focus on finding out what you would do if your child had a disability… of any kind. If you are procrastinating about a formal diagnosis, don’t let it stop you from getting to work on building your knowledge about what to do. I can’t emphasise enough how much parental involvement makes a difference.

It can be physically painful to realise there were things you might have started earlier, if you had been proactive about diagnosing your child. It’s true I’ve met parents who felt bullied into spending money that didn’t lead to a diagnosis, but they aren’t burdened like the parents who grieve their procrastination when they realise they could have acted earlier. They carry that hurt around like a weeping wound.

In my own experience with two sons and a brother on the autism spectrum, none of them have been angry about ‘the label’. For my brother, who realised he was autistic as an adult after my sons, it came as helpful information. At times, he’s been genuinely angry he wasn’t able to have this self-awareness sooner. He could see how it would have benefited him as a child, despite his amazing academic achievements and lovely group of friends. He could see how it would have improved his social skills as a colleague, friend and family member.

Resource

“Far From the Tree”, by Andrew Solomon is a fantastic book that explores the experiences of children finding community and identity when they are born with additional needs. – Good Reads