Who will care for our autistic children when they grow up?
A father’s moving story and a fear that haunts so many ...
AT 18 months old, James Fitzpatrick was a normal toddler. ‘He was such a beautiful child. He’d wake up smiling, happy and chatty,’ recalls his father, Dr Mike Fitzpatrick, 64, a retired Gp from North london.
But by the age of two, James had begun to display classic signs of autism: twirling, flapping his hands and walking round on tiptoes.
‘if you pointed out a squirrel in the garden, he’d look at where your finger had touched the window, rather than the squirrel,’ recalls Mike, 20 years later. ‘i knew then that something was wrong.’
Back then, Mike hadn’t had much direct experience of the disorder in his work as a Gp, but he and his wife Mary, a senior lecturer in sociology and social policy at the Open university, both did the same thing, during the same week, without telling each other.
‘almost against our will, because neither of us wanted our suspicions confirmed, we went into our academic libraries and looked up child development.
‘i made a checklist of the traits — limited verbal and non-verbal communication, very restrictive and repetitive behaviour, sensitivity to sounds and textures. James had them all,’ says Mike.
autism is a developmental disorder that affects how someone communicates with, and relates to, other people. it affects around one person in every 100 (ie, some 700,000 people in Britain) to some degree. people with autism are often also affected by other mental health conditions such as attention deficit hyperactivity disorder (aDHD), anxiety or depression.
it is a spectrum disorder — those at the milder end may have problems with relationships but lead fully independent lives; others need a lifetime of specialist support.
Typically, autistic children progress normally until about 18 months old, then regress at the point when in other children there is a shift in brain development towards more complex social skills.
indeed, the speech James had developed soon vanished and the bubbly little boy folded inwards.
Mike describes a ‘ bottomless grief ’ watching the child they knew disappear, and coming to terms with a life that would be spent managing his increasingly difficult behaviour. James is now 23, and his parents are worried about his future.
it is a common concern. a study this year by the charity autistica found that 94 per cent of parents of autistic children worry about the future of their child — a far higher proportion than parents of children who are developing typically.
a major concern is their child’s mental wellbeing and happiness. Between 60 and 75 per cent of people with autism also have mental health problems, says Dr Emily Simonoff, a professor of child and adult psychiatry at King’s college Hospital, london.
‘in children, the most common are anxiety and aDHD. in adults, depression and OcD also become serious concerns,’ she says. ‘The entire spectrum is vulnerable to mental health problems, yet very few health services have the expertise to diagnose and support them.’
Furthermore, the awareness among healthcare professionals of how to treat people on the autism spectrum ‘is often poor’, according to Jon Spiers, chief executive of autistica.
James’s experience is sadly typical. as he grew up, it became apparent that he was at the more severe end of the spectrum.
‘i more or less slept with him for five years because he’d wake in the night in a frenzy,’ says Mike. ‘He stopped speaking. He wouldn’t eat in a regular way. and he began biting himself or tearing at his skin, an expression of anxiety common in autism.’ Then, when he reached puberty, James’s tendency to self-injury and aggression deepened.
‘He’d punch himself in the face and bite his arms,’ says Mike. ‘if i tried to stop him, he’d set about me, too. i lost count of the number of times we were asked to leave schools.’ James was at home full-time by the age of 12 and had become ‘ aggressive, withdrawn, sad’, his father says. at 13, he was diagnosed with bipolar disorder — not usually associated with autism — and prescribed risperidone, a powerful antipsychotic, as well as antidepressants and a mood-stabiliser, despite a lack of evidence that such drugs help the behavioural problems seen in children with autism.
indeed, Mike now believes James didn’t really have bipolar disorder at all, and that the drugs he was prescribed didn’t help.
as Jon Spiers says: ‘Doctors are forced to take a trial-and- error approach. Two-thirds of individuals with autism have tried drugs that weren’t scientifically proven to work in people like them.’
Of particular concern is the use of antipsychotics. The National institute for Health and care Excellence (NicE) says these drugs, which have side- effects including twitching, restlessness and weight gain, should not be used except in certain circumstances — for example, if other treatments haven’t helped.
BuT a recent analysis by university college london of the medical records of 33,000 people with learning difficulties (including autism) found that almost a third had been prescribed antipsychotics, even though 71 per cent had never been diagnosed with severe mental illness.
in his late teens, James showed some improvement. But Mike is convinced that what changed him was the rigid structure provided by a residential school in aylesbury, Buckinghamshire, that he attended from the age of 13. ‘all the drugs were phased out when James was 15. By the time he left at 18 he was happy, chirpy and relaxed.’
But since leaving school, James, who is now living in supported accommodation, has again sunk into depression.
‘He used to love going on the bus to the supermarket, or to the pub to have a coke,’ says Mike. ‘But constant staff changes have increased his anxiety to the point where he has lashed out a couple of times on the bus because he can’t cope with the noise, and been handcuffed by police and dragged off to the cells.’
Eighteen months ago, he was put back on risperidone. it hasn’t helped to stabilise James’s mood swings, Mike says, but has made him drowsy and ‘zombie-like’, and caused him to gain weight.
‘We have a generation of young adults with autism who 30 years ago would have been institutionalised,’ says Mike. ‘an increasing number are on these medications, which just act as a liquid cosh.’
autistica’s research aims to improve diagnosis and quality of life for people with mental health difficulties alongside their autism. The result, Jon Spiers hopes, will be treatments such as autismspecific cognitive behavioural therapy (cBT), which can be put into clinical practice within four years.
Mike and Mary just want their son happy and settled. ‘We know that with stable, skilled and experienced staff supporting James, he can enjoy life,’ says Mike.