I was recently asked what I thought about the high number of children being diagnosed with autism and ADHD these days. 'What do you think it's about? That didn't exist when we were kids, did it?"
It's something I've often been asked about when someone politely inquires about my children and I happen to mention that one of them, my eleven-year-old son, Eddie, is autistic.
I also don't think the trend towards self-diagnosis, which Anthony David, director of the UCL Institute of Mental Health, described earlier this week as a "major and growing problem", is helping either. I agree that while increased awareness of neurodiversity is largely positive, it is still something that needs to be defined and diagnosed by a professional.
The comment about pediatric diagnosis came from someone I consider very knowledgeable, so I found it quite disappointing. The subtext seems to be that we pay too much attention to neurodiversity. And those labels are not really necessary. The focus on looking for the "cause" or, worse, "cure," implies a sense of guilt and also that there is something fundamentally wrong with neurodiversity.
There is nothing "wrong" with my son. He is attentive, funny and kind. He just happens to be wired a little differently than my other two kids. He has no filter and, as my husband, Dom, says, "what everyone else is thinking." He doesn't always understand social conventions and can talk to people rather than to people, usually about his favorite topics: Star Wars, Minecraft and all things Lego.
He longs for familiarity and routine. He hates crowds, queues and sitting still for too long. The sound of his sister crunching cereal "hurts" his ears. The sound of a chair sliding across the floor sends him running into the next room. If he gets something with a soft texture, such as yogurt or sauce, on his plate, he gets nauseous. He can't tie his shoes or ride a bike, yet he spends hours building incredibly complicated Lego creations. He is not much for affection, but is also, somewhat ironically, a space invader.
The story continues
Before I had my son, I was probably one of those people who were reluctant to "label" a child and wrongly believed that a child's behavior was largely due to poor parenting. That can be a factor, of course, but in the case of my son and other neurodiverse children, it's more complicated and nuanced than that.
The "A" word was first said to us when Eddie was a toddler and had speech and developmental delays in kindergarten, and was brought up again when he entered elementary school. I was baffled and angry at the casual reference to it. "How would you feel if this were your child?" I wanted to say to the head.
Eddie had become overwhelmed by the large class size and the demands placed on him. As a result, his behavior deteriorated. I knew he was a little different, but I just thought he needed more time to grow and develop. Why do we have to label him, I still think.
So I guess I can partly understand the fact that people without any experience with neurodiversity might wonder why autism and ADHD are much more common than they were years ago. I might have thought the same thing before we had Eddie. But the simple answer is that in the past we didn't have the science, knowledge or skills to diagnose it.
In fact, a recent study found that the number of people diagnosed with autism increased by a whopping 787 percent between 1998 and 2018.
Researchers compared the rates of autism recorded in GP records in England, involving more than nine million patients from GP practices. The study, published in the Journal for child psychology and psychiatry suggested that the increase could be attributed to greater reporting, awareness and uptake of an autism diagnosis.
Long waiting times
Recent NHS figures suggest that children now have to wait at least ten months for an appointment after an autism referral (I'd say that's generous) and you then have to navigate the minefield of extended services, acronyms and medical teams to get the right support to get . And the holy grail: an education, health and care plan (EHCP) that specifies the actions to be taken in an educational setting for a child with additional needs. For example, Eddie's, which we had to call on, states that he is visually impaired and may need a larger font and a colored background to read. He has an average IQ but has difficulty concentrating in noisy environments and his behavior can be very repetitive.
However, autism itself is nothing new. The concept was first coined in 1911 by German psychiatrist Eugen Bleuler to describe a symptom of the most severe cases of schizophrenia, a term he also coined.
When we diagnosed Eddie at the age of seven, after waiting almost three years for treatment from the hugely overburdened and underfunded CAMHS (Child and Adolescent Mental Health Service), I had to review my medical history with the clinical psychologist. I mentioned that my late brother, Charlie, had schizophrenia (which ultimately led to his untimely death).
The psychologist then told me, rather callously and flippantly, I thought, that autism used to be called "childhood schizophrenia."
Although autism and schizophrenia are both classified as neurodevelopmental disorders, they are quite different. One is a neurological disorder, the other is a mental illness.
Persistent stigma
Unfortunately, the stigma surrounding autism and the lack of understanding means that children like my son become targets of bullying in mainstream settings. A child at his last school, a small primary school in a beautiful village, called my son 'brain damaged'. Another called him "an autistic idiot". He was always the kid least likely to be invited to a party. So much for inclusivity. I think that speaks volumes about the parents, doesn't it?
That's one of the reasons why it's so important to have basic knowledge and awareness about autism and other neurodiverse conditions. The right support can make the difference; it could even be life-changing, but it took me a while to work that out.
We fought to get Eddie into a specialist school after he was put on a restricted schedule at a mainstream primary school for almost a year because they couldn't meet. [his] needs". Since starting at the new school last June, he has made tremendous progress. He is like any other child: involved, cheerful, talkative and relaxed. He's finally in a place where he's accepted for who he is and that's all any parent wants for a child, right? And every child should have the right to education.
I think the idea that children are now being overdiagnosed also plays a role in the whole "is it genetic or trauma related?" debate. This last theory, even more alarming, has been floated by renowned psychiatrist Dr. Gabor Maté, who believes there is a link between early trauma and the development of ADHD. Dr. Maté wrote in his recent book: Scattered minds that ADHD and autism are rooted in multi-generational family stress and disturbed social conditions in a stressed society.
"Ninety percent of brain development takes place after birth, during the first two to three years of life. It is during this time that the genetic material is induced to express itself in a healthy or disordered manner," he says. "The most crucial of these inputs are the subtle and often unconscious emotional interactions between the child and his caregivers."
In other words, neurodiversity is due to the neurological pathways formed in the first few years, which are largely determined by parental interactions. So if a child goes through a traumatic time in those formative years, they are more likely to develop ADHD, according to Dr. Maté.
That's just one theory, though.
And since Eddie was diagnosed almost five years ago, I have received many theories and rude comments, not least the outdated and defunct idea that neurodiversity didn't used to be 'a thing'. It absolutely was. We just didn't know it at the time.
With awareness comes acceptance and as a mother I hope and pray that my child will grow up in a world that accepts him for the wonderful person he truly is.
Five things I've learned as a parent of an autistic child
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The world can be a difficult place for anyone who doesn't have a limited idea of what is and isn't considered socially acceptable.
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Wearing a sunflower lanyard to show that your child has a hidden disability generally makes people much friendlier.
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Meltdowns aren't always due to bad behavior.
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We are not all "on the spectrum".
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We still have a long way to go before we can fully integrate neurodiverse people into society.
