Being Told My Child Is On The Spectrum Was Life-Changing – But He’s Unique, Not A Label
How hard would it be to admit to yourself, “My child is on the spectrum”? One father explains his difficult experience.
My son doesn’t have a label. My son is not a diagnostic term to be found in a textbook. My son is many things – some utterly wonderful, others incredibly upsetting, mostly complicated and often misunderstood. But he will never be just an initialism or someone to be defined and judged by a medical terms. Not to me anyway. To me my son is my son. Pure and simple. His needs, his difficulties and his traits are what make him, him. Only it’s not that simple is it? Because my child is on the spectrum – he is not “normal”. And because he’s not normal he needs extra help with some things.
But instead of that help being offered willingly by school, instead of people accepting my child’s difference without judgement, I find myself being asked to produce evidence of a diagnosis. I find myself being accused of neglectful parenting because my son has “poor” social skills. I have to put up with the raised eyebrows and sighs of people who think I’m hanging bad behaviour on a diagnosis because it’s easier than doing any actual parenting.
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The truth is, I’ve struggled from the outset with the idea that my son may have genuine problems. I wanted to believe for so long that it was my own failure at parenting – something that could be corrected by redoubling my efforts. I never wanted my son to have a label.
Let me take you back to the beginning. When my son was about two and a half our health visitor made one of those throwaway remarks that usually nobody would think twice about.
“He didn’t want to look at me today,” she said with a smile, “but don’t worry I’m used to it!”
“He never looks at anybody,” I said. “It’s nothing personal.”
The health visitor was taken aback and asked me if that was true. We had a conversation about his lack of eye contact compared to other children and more questions were asked. Did he play with other children? What did he play and how? Did he have lots of complicated rituals? How did he cope with change in routine? I shrugged them off, saying, “All kids are like that right?”
The health visitor didn’t think so. She was concerned that he wasn’t developing as well socially as he was otherwise. Again, I shrugged it off. Kids develop at different paces, I thought. It’ll all sort itself out, he’s only two for god’s sake.
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The health visitor asked if she could refer him to a Parent Infant Specialist, if nothing else to get a second opinion and put the thing to rest. I was very reluctant because I didn’t want my son getting sucked into the system. I didn’t want people intruding into our family and questioning my ability to raise our son. I didn’t want social services deciding to take my child away. There was no reason for them to, but we’ve all read horror stories about it. There was no reason to let these people into our lives because there was nothing wrong with my son. He was challenging, yes, but all kids are. I wasn’t going to slap a label on him just so I could abdicate my responsibilities.
My partner and I talked about it, argued about it, talked some more, and argued again. In the end I agreed to our son being referred so we just could move on. In the months that we waited for the appointment to come through, we talked and argued even more.
After three sessions we were told that our son did have some difficulties that couldn’t be explained away by any normal developmental delays. A further referral was going to be made to a child psychotherapist for him to be assessed.
In an instant the world we knew disappeared. Somehow, as those words were born and made real, our son died. Or at least our “normal” son did. Confronted with the possibility that our beautiful boy would forever struggle in the world, we were overcome with a very real grief.
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The next few days were so strange. I could see my son in front of me – I played with him, I put him to bed, and I read him stories – but through it all I was grieving the loss of part of him. I know it sounds stupid and self-indulgent and insensitive to any parent who has really lost a child, but I really was grieving. I couldn’t, and I still can’t, put my finger on what exactly I was grieving for. The loss of opportunities my son may have had without this stigma holding him back, perhaps.
I was, and still am, desperately sad that my son will always carry a difference that’s judged to be a negative. We all have things we’re no good at and areas in which we excel, so why are some difficulties brandished as “abnormal”?
Through it all I was looking at him differently. I started seeing all these things that could be abnormal. I scrutinized every behaviour as my thoughts about how he wasn’t like other kids snowballed. I tried to tell myself that it was just The Baader-Meinhof phenomenon – that weird feeling you get when you start noticing something everywhere once you’ve heard of it. I began to angrily rail against the idea that my son was somehow broken. I refused to believe it. I wouldn’t have it, not my son. The arguments continued, and I stubbornly stuck to my conviction that we were involved in a self-fulfilling prophecy. Of course we would see problems if we looked hard enough.
It was all just hollow chest beating though. As the words flew from my mouth during yet another argument I knew I didn’t really believe them. I wanted to believe them. I wanted so desperately to be right. But I wasn’t. I knew that my son had difficulties. I knew that, for all his obvious intellect, he just couldn’t grasp the rules of social situations. I knew that he played the same game, in the same way, every day. The obsessions, the rituals, the emotional knife edge he walked suddenly made sense. The issues he had with food and sleep could be explained.
After the sessions with the child psychotherapist and the clinical psychologist, there was no doubt. I had to accept that my son needed help. So I learnt. I read and I learnt about how my son’s mind worked and the best way to communicate with him. I changed my approach. I stopped being angry that “normal” parenting didn’t work and accepted that my son needed a different approach.
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He doesn’t have a diagnosis yet. There are more assessments to be done, more behaviour inventory scales to be filled out, more observations. We know that our son has traits of this diagnosis or that but at his age it is difficult to give a concrete diagnosis. So right now, I find myself repeating the phrase, “My child is on the spectrum, but we don’t know where yet.”
All of which means it is easy for people to dismiss his need for help. It is easy to refuse to acknowledge the existence of something that is not easily pigeon holed. Sometimes it seems that not having a label is worse than having one.
Why can compassion and understanding only happen once the proper paperwork has been filed? Does it matter what this doctor or that clinician says? He’s a child, an individual, a unique being. What’s the harm in treating him that way?
I think it’s a good thing that professionals don’t like to over-diagnose children of such a young age, and really, in the end, what does having a label achieve? My son is who he is.
He is more sensitive than other children but that means he cares deeply for his friends and family. He is obsessive but that means he has vast knowledge of the subjects about which he’s obsessed. He loves to dance but isn’t good at climbing trees. He doesn’t understand the rules of the playground, but he excels academically. My son is a caring, beautiful, bright and funny boy. He needs help where others don’t but so what? We all need a bit of help sometimes.