Autism, parenting, Far from the Tree and a wishlist

Today I read the chapter on autism in Andrew Solomon’s excellent book Far from the Tree, which is an insightful and often harrowing study of families where parents have children who are very different to themselves. I take my hat off to Andrew Solomon for his handling of the subject of autism, which can be a minefield. His approach struck me as both sensible and sensitive, and I turned down the corner of the page at this bit:

We need respite care, and free and satisfactory residential placements; we need positive narratives of autism that free parents from the compulsion to eliminate the syndrome…

Here are a few more points for the list:

Suitable education.  From what I’ve heard from other parents, schools in the UK vary wildly in how accommodating they are to children with autism. A school that’s willing to adapt and be flexible can make all the difference between your child managing to cope and being excluded, and if he or she is excluded, don’t expect an appropriate full-time place elsewhere to be offered any time soon. That’s why I support Ambitious about Autism’s Ruled Out campaign.

Even at best, a mainstream primary school is a tough environment for a child with autism, who may well be acutely sensitive to noise and find the playground an overwhelming mass of undecipherable social signals. If I spend time at my kids’ school, I come home wondering how the staff do it day in, day out. It’s pretty full on. For my son it must be a cross between earsplitting disco, exam nightmare and seven-course banquet with very confusing cutlery, unfamiliar food, and fellow guests who speak a host of different languages and have unguessable cultural expectations. By which I mean to say, a social and sensory challenge.

Prompt diagnosis. Even if everything points towards a diagnosis of autism, it takes time, simply because of the pressure on services. The unit where my son was diagnosed in 2010 saw four children a week. There has been an exponential increase in diagnoses of children with autism in Oxfordshire in recent years, which can only mean a lot of parents waiting… And diagnosis is the key to accessing the right support.

Last summer, I went on a course for parents of children with autism and their carers, run by the National Autistic Society – I’d been on the waiting list for two years, which tells you something about the level of need.

Childcare. If you want to help children with autism and their families, one way to do it is to support mothers of autistic children who want to work.

Here are some statistics, via the Papworth Trust:

• 84% of mothers of disabled children are not working compared with 39% of mothers of non-disabled children. Only 3% of mothers of disabled children work full time and 13% work part time.
• The average income of families with disabled children is £15,270, 23.5% below the UK mean income of £19,968, and 21.8% have incomes that are less than half the UK mean.
• And, from a 2001 report compiled for the all-party parliamentary group on autism, ‘Employment has been found to have considerable psychological benefits for carers…’

Shout out due here to Guideposts Trust, which runs the holiday club my son attends.

Back to Andrew Solomon’s Far from the Tree:

Parents of autistic children are often sleep-deprived. They are frequently impoverished by the cost of care. They are overwhelmed by the unrelenting needs of children who often require constant supervision. They may be divorced and isolated. They may spend endless hours fighting their insurance and health providers and the local education authority that determines what services their child will get. They may forfeit their jobs because they miss so many days to deal with crises…

Is autism on the increase?

According to Far from the Tree, the US Department of Education says that autism is growing at a rate of 10 to 17 per cent per year. Andrew Solomon has these eminently reasonable points to make on the subject:

Part of the upsurge has to do with the broadening of categories: people who might once have been classed as schizotypal or mentally retarded are now on the spectrum, as are some who would once have been thought odd but not given a diagnosis.

If you attach better services to a diagnostic category, some doctors will apply that diagnosis to children for whom it is not entirely appropriate in order to access those services.

But also:

Is autism itself also on the rise? Inconceivable time and energy have been poured into this question, and no consensus has emerged, but it seems reasonable to conclude that both diagnosis and incidence have increased. During the decade that I spent working on this book, people would hear my list of chapters and then offer to introduce me to friends who were dealing with autism at least ten times as often as they would offer introductions to people with any of the other conditions. NIMH director Thomas Insel recounted a time during the 1970s when an autistic child was admitted to Boston Children’s Hospital; the chief of service called the residents together to observe him, reasoning that they might never see an autistic child again. On Insel’s own street today, which has nine houses, two children have autism.

The deepest riddle

One of the stories Solomon recounts is about Portia Iversen and her son Dov Shestack. When Dov was nine, Portia realised he could read, which came as a shock: ‘You don’t think they can read when you don’t know they can think.’

When she understood that he could express himself, she asked him what he’d been doing all these years. ‘Listening,’ he said.

Portia Iversen has investigated the deepest riddle of autism: the relationship between what can be observed and what is going on inside autistic people.

This observation caught my eye, too:

Medicine has been too eager in many cases to dismiss parents’ insight. August Bier, a physician practising in the early twentieth century, said, ‘A smart mother often makes a better diagnosis than a poor doctor.’

What helps?

We were lucky enough to receive some good advice from the clinical psychologist who diagnosed our son. These points have stayed with me:

• Much of the advice given to parents on how to connect with children with autism boils down to this – copy what they’re doing, join in with it, get down on the floor and play with them in the way they play. You don’t have to do it for hours on end – maybe just try 10 minutes a day.

This makes sense, if you think about it. If you’re trying to start a conversation with someone you don’t know, you don’t kick off by insisting they do things your way; you try to tune in to what’s going on with them.

• You might as well give fish oil a go.

This is a pretty old-fashioned remedy, right? Like cod-liver oil. We give our son that Eye Q stuff – you can buy it in the supermarket, or online. He doesn’t like it off the spoon, so we put it in his morning juice. (Please, nobody tell me that’s wrong, for some reason.) I don’t know for sure that it helps – but it seems benign. Something that definitely did make a difference was a course of iron medicine; when he had the outpatient appointment that preceded his multi-disciplinary assessment and diagnosis, a blood test revealed that he was anaemic. Sorting that out lead to a big improvement in his behaviour.

The clinical psychologist also did me the service of telling me in no uncertain terms that Tom’s autism wasn’t my fault. Most mothers of children whose development is delayed probably ask themselves at some point if it’s because of something they’ve done. Back in the bad old days, when it was held that autism was caused by ‘refrigerator mothers’, this, my worst fear, would almost certainly have been confirmed rather than refuted by the medical experts.

It doesn’t seem to have occured to anyone, during the refrigerator mother era, that caring for an unresponsive or extremely fractious and sleepless child might leave a woman shell-shocked, depressed and ambivalent about parenting – in other words, that parenting is two-way, and to some extent, the mother is made by the baby just as the baby is made by the mother.

Here’s another extract from Far From the Tree:

In 1965, parents created the National Society for Autistic Children; at the first meeting, they are said to have worn name tags in the shape of little refrigerators. ‘We mothers would have liked an apology,’ said Eustacia Cutler, mother of the prominent autistic intellectual Temple Grandin. We deserve it. And so do the fathers.’

Do watch Temple Grandin, the biopic with Claire Danes in the lead role – it’s brilliant.

The students who took hidden children out into the world

Writing about Far from the Tree has reminded me of the Ely scandal, which prompted the inquiry that lead to the beginning of the end of widespread use of long-stay institutions to house people with learning disabilities.

Can somebody please make a film about the first group of people from a long-stay mental institution (Ely, a few years after the inquiry) who went out to live in the community, helped by a household of Cardiff students?

From an account by David Brindle, in the Guardian – ‘Honour for Jim Mansell, who brought learning
disability out of the shadows’: ‘In 1970, there were 60,000 adults and children with learning disabilities living confined, institutional lives in long-stay hospitals. That autumn, a young student [Jim Mansell] newly arrived at Cardiff University agreed to help take a group of children from the city’s Ely hospital to the cinema on a Saturday morning. From that point on, the hospitals stood no chance… The children had shaven heads because lice were endemic, Mansell said, and “I remember not enough underwear, so people [were] wearing pillowcases pinned around them, trousers held up with pins”.

He continued: “We took a crocodile of these children across the road, out of the hospital, and through a council estate to a cinema, and the people on the estate came out … to press money into our hands to buy things for these children because they were in such obvious need. We were so angry about what was going on, we formulated the idea that really these kinds of places shouldn’t exist and people should be able to live in houses with whatever support they needed in the community.”

• Fears for the future and the Winterbourne View scandal
• Swimming in the Thames to raise funds for Ambitious about Autism
• The moment I found out about my son’s autism