Inhaled steroids for milder asthmatics
Dr Sylvia Bond explains how with the right help her autistic son, James, is developing into a happy, affectionate boy
Your son is autistic. Not a phrase you expect a parent to welcome, but for some it comes at the end of a long road to diagnosis. Autistic Spectrum Disorder (ASD) covers a wide range of symptoms and special needs, particularly within language and social skills. There is no cure and the effects are for life, another reason not to welcome such a label.
Crucially though, children who jump the diagnostic hurdle can gain access to support in the new National Autistic Plan. This can trigger the home tuition service for pre-school children (Portage), a statement of special educational needs (SEN), access to disability living and carers allowances and, if you are very lucky, speech and language therapy (SALT).
In our case, the words 'your son is autistic' were first uttered after my son's third birthday. They came as a shock. I had been a GP for eight years and our practice's lead in child health services. I even hold the diploma in child health, so a good dose of denial was only to be expected. With the good old retrospectoscope though, a diagnosis could have been made much earlier. James's elder sister was an advanced talker. For his first year James followed exactly the same milestones as his sister. By two he babbled constantly in Klingon, but was worryingly unresponsive to spoken words, even his own name.
He did say 'duck', once, but trips to the park failed to produce any repetition. James did not regress, as some report, he simply didn't develop any language – and his sister did not talk for him. What James could do was play happily for hours on end with his Thomas the Tank Engine, do quite difficult jigsaws, and soak up hours of children's television.
So what to do? The first stop was to prove he could hear. Thankfully, our local consultant paediatric audiologist spotted something amiss and referred us to the community paediatricians. A first assessment was inconclusive, highlighting James's apparently high level of intelligence, very mixed social skills, and total lack of language.
Until now all James's wants were communicated to me by pulling my hand, never pointing. I usually knew what he wanted as life was a sequence of obsessive rituals. But now we embarked on Portage and SALT. I discovered methods of non-verbal communication, symbols and signs. We all learned some sign language and that was definitely a stepping-stone to verbal language. At three years James learned to read, say and understand language, in that order, like learning a foreign language.
Our first assessment had been after an hour's wait in a room with no toys. We next saw the same paediatrician in our new child development centre.
What a contrast. A full morning assessment by a multidisciplinary team of occupational therapists, specialist health visitor, SALT and paediatrician all backed up by an experienced nursery nurse in a playroom (where he was observed failing to respond to another boy who hit him). As a parent it was great not to have to pin him down while listening to the bad news so I heard something after those words 'Your son is autistic'... That was when we started discovering how to help him in earnest.
Diagnosis helped us to understand other aspects of his condition, his poor eye contact, hypersensitivity to touch and sound and dietary intolerances. His gluten/casein-free diet and omega 3/6 supplements have resulted in a calmer and more receptive child. Any tiny diet infringement will result in him being awake at 3am, flapping and distracted as his obsessions take over as well as causing diarrhoea.
Now I am aware of autism, I can make a diagnosis in 10 minutes. As our Portage teacher said, her heart sinks when she hears of a new referral of a three-year-old boy with speech delay who is obsessed with Thomas The Tank Engine and great at jigsaws and the alphabet. A patient of mine could not see anything wrong with her four-year-old sitting for hours at the PlayStation still in nappies, except for his impending entry to school.
Training before school is the key. These children have a window of opportunity from two years, when diagnosis should be possible, for intense training, mostly by parents with guidance from Portage, SALT, special needs and nurseries. It should not rely on charity places. The National Autism Plan is being rolled out but provision still varies geographically.
James is now six and in mainstream school with full SEN and special needs assistant. He is a happy, affectionate boy, which is not typical of autism – but therein lies the variability of the autistic spectrum. Older children may feel stigmatised, but so far James is blissfully unaware of what others think of him, except he did get told off at school for kissing a girl last week. Social interaction – hooray!
What does big sister think of having an autistic brother? Well it was great when we got a disabled pass at Disney World to jump the queues. Oh, and he may be handsome and special, but I did not call my son James Bond – that's my maiden name.
Sylvia Bond is a GP in Romford, Essex
What I have learned from my son's autism
• All autistic children are different
• Refer early to a child development centre
• Interventions with non-verbal communication and diet do work
• GPs can be a vital link from presentation onwards: autism affects families; watch for depression and marital strain
• Autistic children are usually eligible for disability living allowance
• Education authorities favour inclusion in mainstream schools with special education needs support
•Baird G. Diagnosis of autism. BMJ2003;327:488-93
National autistic society www.nas.org.uk
Diet intervention. Autism research unit. osiris.sunderland.ac.uk/autism
Sign language. www.makaton.org