by I was recently asked what I thought about the high number of children diagnosed with autism and ADHD today. “What do you think it has to do with it? It wasn’t a thing when we were kids, was it?”
I have been asked about it many times when someone politely inquires about my children and I happen to mention that one of them, my 11 year old son, Eddie, is autistic.
I don’t think the trend of self-diagnosis, which, earlier this week, Anthony David, director of the UCL Institute of Mental Health, described as “a big and growing issue”, helps either. I agree that while increased awareness of neurodiversity is largely a positive thing, it is still something that needs to be defined and diagnosed by a professional.
The comment about children being diagnosed came from someone I consider quite knowledgeable so I was disappointed. The subtext seems to be that we are making too much of a “thing” about neurodiversity. And labels are not really necessary. The focus on looking for the “cause” or, worse, a “cure” implies blame and also that there is something fundamentally wrong with being neurodiverse.
There is nothing “wrong” with my son. He is thoughtful, funny and kind. He just happens to be wired a little differently than my other two children. He has no filter and says, as my husband, Dom, puts it, “what everyone else is thinking”. He doesn’t always understand social conventions and can talk to them rather than to people, mostly about his favorite subjects – Star Wars, Minecraft and anything Lego related.
He wants familiarity and routine. He hates crowds, queues and being forced to sit still for too long. The sound of his sister crunching corn “hurts” his ears. The sound of a chair scraping across the floor sends him running into the other room. Having anything with a soft texture, like yogurt or sauce, on his plate makes him feel nauseous. He can’t tie his shoelaces or ride his bike but spends hours building incredibly complex Lego creations. He doesn’t have much affection but he’s also a space invader, ironically.
Before I had my son, I was probably one of those people who hesitated to “label” a child and mistakenly believed that a child’s behavior was, for the most part, the result of bad parenting. That can be a factor, of course, but for my son and other neurodiverse children, it’s more complicated and nuanced than that.
The “A” word was first introduced to us when Eddie was a toddler with speech and developmental delays at preschool and was brought up again when he started elementary school. I was horrified and upset at how casually it was referred to. “How would you feel if this was your child?” I wanted to tell the head.
Eddie had become overwhelmed with the large number of classes and the demands placed on him. His behavior worsened as a result. I knew he was a little different but I thought he needed more time to grow and develop. Why do we have to put a label on it, I remember thinking.
So I guess I can partially understand that people who have no experience with neurodiversity might wonder why autism and ADHD seem so much more prevalent than they were years ago. I might have thought the same thing myself before we had Eddie. But the simple answer is, we didn’t have the science, knowledge or skills to diagnose it in the past.
In fact, a recent study suggested that the number of people diagnosed with autism increased by a whopping 787 percent between 1998 and 2018.
Researchers compared autism rates recorded in GP records in England, covering more than nine million patients from general practitioner practices. The study, published in Journal of Child Psychology and Psychiatrythat the increase could be attributed to increased reporting, awareness and implementation of an autism diagnosis.
Long waits
Recent NHS figures suggest that children now have to wait at least 10-months for an appointment after an autism referral (I think that’s generous) and then you have to contend with a range of extension services, acronyms and medical teams to get the right support. . And, the Holy Grail, Education, Health and Care Plan (EHCP) which specifies the measures that must be in place in an educational setting for a child with additional needs. In Eddie’s, for example, which we had to appeal to get, it is stated that he is visually impaired and may need larger print and a colored background for reading. He has an average IQ but finds it difficult to concentrate in noisy environments and his behavior can be very repetitive.
However, autism itself is nothing new. German psychiatrist Eugen Bleuler first coined the concept in 1911 to describe symptoms of the most severe cases of schizophrenia, a term he also coined.
When we were diagnosed with Eddie, aged seven, after waiting almost three years to be seen by the overstretched and underfunded CAMHS (Child and Adolescent Mental Health Service), I had to run through my history therapy with the clinical psychologist. I mentioned that my late brother Charlie had schizophrenia (which eventually led to his untimely death).
The psychologist then told me, what I thought was an insensitive and snarky way, that autism is usually called “childish schizophrenia”.
However, although autism and schizophrenia are classified as neurodevelopmental disorders, they are very different. One is a neurological condition, the other is a mental illness.
Persistent stigma
Unfortunately, the stigma surrounding autism and the lack of understanding mean that children like my son become targets for bullying in mainstream settings. One 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 least likely child to be invited to a party. So much for inclusiveness. I think that says a lot about the parents, doesn’t it?
That’s one of the reasons why it’s so important to have a basic understanding and awareness of autism and other neurodiverse conditions. The right support can make all the difference; it can, in fact, be life-changing, but it took me a while to work that out.
We fought to get Eddie into a specialist school after almost a year of being put on a reduced timetable at a mainstream primary school because they couldn’t “get together. [his] requirements”. He has made huge progress since he started at the new school in June last year. He is like a different child – engaged, happy, talkative and relaxed. He is finally in a place where he is accepted for who he is and that is what any parent wants for their child, isn’t it? And every child should have the right to education.
I think the idea that children are now being overdiagnosed is also related to “is it genetic or trauma?” debate. The last theory is even more alarming by the famous psychiatrist Dr. Gabor Maté who believes that there is a link between early trauma and the development of ADHD. Dr Maté, in his recent book, wrote Scattered Mindthat ADHD and autism are rooted in multigenerational family stress and disturbed social conditions in a stressed society.
“Ninety percent of brain development occurs after birth, in the first two or three years of life. It is during this time that the genetic material is stimulated to express itself in healthy or disordered ways,” he says. “The most important of these inputs are the subtle and often unconscious emotional interactions between the infant and its caregivers.”
In other words, neurodiversity is the result of the neurological pathways formed in the first few years, which are mainly determined by parental interaction. So if a child has a traumatic time in those formative years it is more likely, according to Dr. Maté, to develop ADHD.
That’s just one theory, though.
And since Eddie’s diagnosis almost five years ago I’ve been getting a lot of crazy theories and opinions, especially the outdated and unorthodox idea that neurodiversity wasn’t a “thing” back in the day. It was completely. We did not know 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 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 does not fit a limited idea of what is and is not socially acceptable.
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By wearing a sunflower lanyard to show that your child has a hidden disability, people tend to be a lot kinder.
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Convictions do not always lead to bad behavior.
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We are not all “on the spectrum”.
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We have a long way to go before we fully incorporate neurodiverse people into society.
