State’s services must catch up with what parents already know

IT’S nearly two weeks since psychologist Tony Humphreys sparked outraged by saying children on the autism spectrum were shutting down because of an “absence of expressed love” from their parents.

My first reaction was inarticulate rage. Yes, I have a child in the autism spectrum. Yes, I love him to bits. Yes, I show it.

However, as the rage dies, I realise that Humphreys’ blunder is a symptom of a much wider malaise: Traditional psychology is defending its territory.

For over a century, at least since Freud, the whole of Western society has become accustomed to seeing mental dysfunction as part of a story. Much like a detective novel, the story has at its core a terrible secret. You extract the secret and you have cured the patient.

All right, I’m being deliberately crude. But that’s because I’ve had the experience of seeing a medical team attempt to tell a story about our family to make sense of my son Tom’s autism.

We presented ourselves to the State’s psychological services with a deeply disturbed child of four-and-a-half in 2005. So began two years of delving into our life as a family.

I trained as a literary critic and so I was hyper-aware of the stories they were weaving. The best and the most enduring one was about me, the mother.

Mothers always make the best copy. I had “family of origin” issues. I should go and see a psychotherapist.

In truth, my “issue” was that my child was very unwell. Because I was his mother, I was too. That was why we were with the services. It’s not surprising that “maternal sensitivity” to a child’s needs is the best indicator of the child’s future welfare. I remember looking the team in the face and saying quite clearly: “I don’t need to see a psychotherapist.”

One of the social workers believed my problem was that I had given up my job. She took issue with what she called my “traditional role in the home”.

It seems new ways will always be found to blame the mother. Remember Bruno Bettelheim’s “refrigerator mother” in the 1960s? And Betty Friedan’s “too much mothering” theory in The Feminine Mystique?

I have loved being a mother. I knew my son’s terrifying behaviour — which, for instance, saw him suddenly and smash every ornament in the sitting room — came from somewhere “outside the family”.

I was told: “Here we believe that every issue comes from inside the family.”

Remember that you were paying for all this: Two years of probing in the wrong place when an autism diagnosis should take a maximum of six months.

Though there were some excellent clinicians on that multi-disciplinary team, we ended up getting a private diagnosis.

I had been taking Tom to a Finnish art therapist. When she asked me if there was autism in the family I nearly collapsed. However, she pressed me to go to the best expert on autism I could find so that I could at least rule it out.

Sadly, Tom’s autism was ruled in.

We went back to the State services with our private diagnosis and they quickly caught up. Since then we have had some good support such as speech therapy and occupational therapy, including an intensive cycling course which got my little boy speeding down the road on his own. Joy.

There will never be enough resources for these kids. What is never said is that there are some excellent services.

However, there is a massive problem with diagnosis. And that is not surprising when you think that most clinicians in the psychological services trained before autism spectrum disorders were very widely disagnosed.

They need to defend their training particularly as there is a school of thought which sees genetics as the main determinant not just of sensory processing disorders such as autism, but also of most mental dysfunction.

Problems with autism diagnosis are an issue all over the world. In France, sensory processing disorders were diagnosed as schizophrenia until 2004.

It is interesting that both Humphreys and Dr Sami Timini concede the psychological ground on full-on autism but argue for it when the autism is milder.

That’s because if you argued a psychological cause for severe autism you’d be laughed off the stage. Less severe autism has symptoms which are mild enough and diverse enough that you can get away with the idea.

It is true that there is no one “autism”, but rather a series of different global sensory processing disorders which go under that name. However, they are all defects in brain function which are “pervasive” and that means they’re all over the child’s personality. You can’t get away from probably hundreds of symptoms like my son’s, which include chronic dyslexia, intellectual delay, chronic noise sensitivity, and compulsive obsessive behaviour.

The child is disabled. It’s as simple as that. As a parent you’ve got to accept it.

All we need now is for the State’s services to catch up.

* Victoria White is a journalist and the author of Mother Ireland: Why Ireland Hates Motherhood (Londubh Books)

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