It’s been 18 months since my son Rory was diagnosed as autistic. On that hot summer day that seems both like yesterday and also a lifetime ago, our family changed beyond recognition. The emotional rollercoaster ride that has followed has been at turns gruelling, joyful and enlightening.
One thing I’ve sadly come to learn is that while not everyone understands my beautiful, blue-eyed boy’s condition, some people add to the social misconceptions that shamefully still exist around ASD. But it usually comes from an online troll or someone from an older generation who enjoys peddling the myth that autism “didn’t exist” in their day and is merely an excuse from parents who can’t control their kids. It doesn’t usually come in the form of comments from a distinguished child psychiatrist like Dr Mike Shooter, who has worked with young people for more than 40 years.
And yet today I found myself shouting at the television today while he gave what I consider to be an inflammatory and offensive interview on This Morning. In several recent interviews to publicise his new book, he has claimed that autism is not only “vastly over-diagnosed” but also a convenient way out for parents who refuse to accept the responsibility of their child’s behaviour – and I have watched on in jaw-dropping horror.
According to the eminent Dr Shooter, us parents of children who are on the spectrum may also like to brag about it down the pub, as having a kid who is high-functioning in certain areas despite other developmental delays can give you a bit of parental “kudos”.
Amazingly, however, there is one line that I agree with him on – although it’s in an entirely different context from the one that he intended. Rory’s autism is a “badge of honour” for me, but not because it’s a label I can peddle out time and again to explain or excuse his behaviour.
In fact, not just my husband Geoff and I, but also our daughter Immy, our extended families and our wonderful friends all embrace Rory’s autism. None of us would change a single hair on his head because to do so would be to alter who my son is, and at just four years old he is a truly remarkable and incredibly brave human being who brings joy and laughter into everyone lucky enough to know him.
In our family’s experience, and that of many other parents we have met in the same situation, a diagnosis of autism doesn’t validate your worries about your child. Yes, it can explain traits and concerns that you have struggled to come to terms with often for years, but the “label” of autism – a phrase that I hate, by the way – is often where many of the daily worries and much of the hard graft starts.
Since Rory’s diagnosis, I have learned the hard way that you have to fight tooth and nail for the help and support your child is entitled to. Almost a year on from beginning the process to get his EHCP (educational health care plan) in place, and six months on from starting to try to navigate the journey to find the right school setting for him, I know only too well how bloody tough the day-to-day life of being the parent of a child with additional ne really is.
Simply getting a diagnosis of autism for a child can prove ridiculously difficult, and I speak as someone who has fortunately spent the past two decades asking awkward questions for a living as part of my job as a journalist.
I’ve come across numerous parents who have spent years fighting to get a diagnosis, and copious tales of children who can’t get one because of reasons such as they are “coping OK” at school – despite clear evidence to the contrary.
Yes, more young people may now be diagnosed with ASD, but this is only because awareness in society is growing and not because “troublesome children” are being wrongly labelled when in fact the cause is “awful situations” in their home life.
I’d encourage Dr Shooter to walk for a day in the shoes of a parent of a child with autism, and then reflect on some of his theories. Views like his do nothing to reduce the social stigma that can still surround spectrum conditions in this country.