The one thing I wish people would stop asking me when I tell them I have an autistic child

I was asked recently what I thought about the high number of children being diagnosed with autism and ADHD today. “What do you think it’s down to? It wasn’t a thing when we were kids, was it?”

It’s something I’ve been questioned about many times when someone politely enquires 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 UCL Institute of Mental Health, described as a “big and growing issue”, helps either. I would agree that, while increased awareness of neurodiversity is a largely positive thing, it’s still something that needs to be defined and diagnosed by a professional.

The comment about children being diagnosed was from someone I consider to be quite well informed so I found it rather disappointing. The subtext seems to be that we are making too much of a “thing” about neurodiversity. And that labels aren’t really necessary. The focus on looking for the “cause” or, worse, “cure”, implies a sense of 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 slightly differently wired from 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 grasp social conventions and can talk at rather than to people, mostly about his favourite topics – Star Wars, Minecraft and anything Lego-related.

He craves familiarity and routine. He hates crowds, queues and being made to sit still for too long. The sound of his sister crunching cereal “hurts” his ears. The sound of a chair scraping across the floor sends him running into the next room. Having anything with a soft texture, such as yogurt or sauce, on his plate makes him feel nauseous. He can’t tie his shoelaces or ride a bike yet he spends hours building hugely intricate Lego creations. He’s not big on affection but is also, somewhat ironically, a space invader.

Before I had my son, I was probably one of those people who was reluctant to “label” a child and mistakenly believed that a child’s behaviour was, for the most part, largely down 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 mentioned to us when Eddie was a toddler and had speech and development delays at pre-school and brought up once again when he started at primary school. I was dismayed and upset at how casually it was referenced. “How would you feel if this was your child?” I wanted to say to the head.

Eddie had become overwhelmed with the large class size and the demands that were being placed on him. His behaviour deteriorated as a result. I knew he was a bit different but I just thought he needed more time to grow and develop. Why do we have to put a label on him, I remember thinking.

So I suppose I can partly understand the fact that people without any experience of neurodiversity might wonder why autism and ADHD seem much more prevalent than they did years ago. I might have thought the same thing myself before we had Eddie. Yet the simple answer is, we didn’t have the science, knowledge or the skills to diagnose it in the past.

In fact, a recent study suggested that the number of people diagnosed with autism has jumped by a staggering 787 per cent between 1998 and 2018.

Researchers compared the rates of autism recorded in GP records in England, covering over nine million patients from GP practices. The study, published in the Journal of Child Psychology and Psychiatry, suggested the increase could be put down to increased reporting, awareness and application of an autism diagnosis.

Lengthy waits

Recent NHS figures suggest that children now face at least a 10-month wait for an appointment after an autism referral (I would think that generous) and then you have to navigate the minefield of stretched services, acronyms and medical teams to get the right support. And, the holy grail, an Education, Health and Care Plan (EHCP) which specifies the measures that need to 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 states that he is visually impaired and may need a bigger font and coloured background for reading. He has an average IQ but finds it hard to concentrate in noisy environments and his behaviour can be very repetitive.

Autism itself, however, is nothing new. The concept was first coined in 1911 by the German psychiatrist Eugen Bleuler to describe a symptom of the most severe cases of schizophrenia, a term he also created.

When we had Eddie diagnosed, at the age of seven, after waiting for almost three years to be seen by the hugely overstretched and underfunded CAMHS (Child and Adolescent Mental Health Service), I had to run through 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 insensitively and flippantly I thought, that autism used to be called “childhood schizophrenia”.

However, while autism and schizophrenia are both classified as neurodevelopmental disorders, they are quite different. One is a neurological condition, the other is a mental illness.

Ongoing stigma

Unfortunately, the stigma around autism and the lack of understanding means that children like my son become targets for bullying in mainstream settings. One child at his last school, a small primary in a lovely village, called my son “brain damaged”. Another called him “an autistic idiot”. He was always the child least likely to be invited to a party. So much for inclusivity. I think that speaks volumes about the parents, don’t you?

Which is one of the reasons it’s so important to have a basic understanding and awareness about 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 battled to get Eddie into a specialist school after almost a year of being put on a reduced timetable at a mainstream primary as they couldn’t “meet [his] needs”. He has, since starting in June last year at the new school, made huge progress. He’s like a different child – engaged, happy, chatty and relaxed. He is finally in a place where he is accepted for who he is and that’s all any parent wants for a child, isn’t it? And every child should have the right to education.

I think the idea that children are now being overdiagnosed also plays into the whole “is it genetic or trauma-related?” debate. The latter theory has, even more alarmingly, been bandied about 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 multigenerational family stress and in disturbed social conditions in a stressed society.

“Ninety per cent of brain development occurs after birth, during the first two or three years of life. It is during this time that the genetic material is triggered to express itself in healthy or in disordered ways,” he says. “The most crucial of these inputs are the subtle and often unconscious emotional interactions between the infant and his caregivers.”

In other words, neurodiversity is down to the neurological pathways formed in the first few years, which are determined largely by the interaction from parents. So if a child has a traumatic time in those formative years they are, according to Dr Maté, more likely to develop ADHD.

That’s just one theory, though.

And since having Eddie diagnosed almost five years ago I have been on the receiving end of lots of theories and crass comments, not least the outdated and defunct idea that neurodiversity wasn’t “a thing” back in the day. It absolutely was. We just didn’t know it at the time.

With awareness comes acceptance and, as a mum, I hope and pray that my child will grow up in a world that accepts him for the wonderful person that he truly is.

Five things I’ve learnt as the parent of an autistic child

• The world can be a difficult place for anyone who doesn’t fit a limited idea of what is and isn’t deemed to be socially acceptable.
• Wearing a sunflower lanyard to show that your child has a hidden disability generally makes people much kinder.
• Meltdowns are not always down to bad behaviour.
• We are not all “on the spectrum”.
• We have a long way to go before we fully incorporate neurodiverse people into society.