The A-word: Autism

Declaration of interest: I have two teenaged sons and several other family members who are on the autistic spectrum. My sister-in-law works for a large city's autistic support service. We have all negotiated health and education services for the last 16 years.

I resist writing opinion pieces on this subject because, arguably, I have too polarised an opinion. I am in too deep. However, I have also been privileged to be trusted by several of our patients, who either have fears for their family or those who have started their own journey through life with a newly-diagnosed family member. In this role, I do have the chance to hear other people's fears and hopes; to offer my support and share my experiences.

The public at large are much more informed about autism now than 20 years ago. I remember trying to 'reach' an inconsolable autistic child, who had been brought there in total desperation by his parents, when I worked in A&E in 1993. Few of the paediatric staff had any idea of what we should do either, if I remember correctly. However, some of the benefits of increased awareness and tolerance, can be offset by misconceptions and sweeping generalisations, such as 'all geeks have Asperger's, 'all people with autism are savants, no eye contact, no empathy'…

As this parent writes in the Guardian this week, "You clench your jaw. In the pit of your stomach, there's that familiar sinking feeling. You are reading an article, having a conversation, listening to the radio. And suddenly someone drops the A-bomb: autistic. "Brace yourself," thinks you, the weary autism parent. "Breathe deeply." With the worryingly rapid rise of diagnoses in autism across the world over the past couple of decades comes another tedious phenomenon: the casual use of the word "autistic" to describe behaviour by people who, frankly, don't know a lot about autism. "

Most people do not realise that autism has a wide spectrum of abilities and disabilities, with only a few key areas that are found in all. Many neuro-functionally normal people may have single autistic traits which they can accommodate well within their everyday lives. Some 'lovable eccentrics' possibly come in this category.

The current prevalence figures for ASD are around one in 100. A recent study reports that there are currently 700,000 people who are living with autism in the UK. I suspect this is not an accurate estimate.

Only those a) whose problems are sufficient to impair their daily functioning, b) who are young enough to have been picked up by the increased awareness in schools and amongst health visitors, and c) who have no innate resistance to being labelled, will be included in that figure.

On the other hand I am aware that some children may be receiving the 'label' in order to access help from services and education that would not otherwise be available without that diagnosis. It is their only route to support. So parents 'in the know' manipulate the system. I apportion no blame. They're parents, trying to do the best for their child.

People can be quite averse to labelling. I know my husband and I were initially. Helpful colleagues and health professionals persuaded us it was just 'a signpost,' that this young person needed a slightly different approach. I don't know how we could have managed without it. However, some worry it may be used against their loved one. The unhelpful loner stereotype (particularly an inaccurate one) is a worrying label to carry when a crime's been committed. How often have you heard a news report dealing with a murder contain that 'quiet loner' phrase?

And so we come to the study that was commissioned by Westminster, by an MP who has a grandson on the autistic spectrum. It has recommended that all NHS staff are trained to support autistic people. Great idea in theory, but difficult in practice when resources, particularly time, are in short supply.

The Royal College of General Practitioners (RCGP) made autism one of its clinical priorities from 2015 and already have an excellent learning module available online. This suggests to me that many GPs may already be aware of their deficiencies and want to do something about it. You can do a lot worse than suggesting people look at The National Autistic Society's website. This has great resources for facilitating GP or hospital trips with family members on the spectrum.

The study also suggests GPs report autistic patients to a national anonymous register. Does anyone else hear alarm bells? I know it's early days and I know it's only a suggestion, but I have SO many questions about this and how it will work, I barely know where to begin.

If you're feeling motivated to increase your own knowledge on this subject, there have been two sets of national guidelines released recently that recommend standards of care for people with autism and we are in the process of updating our related content accordingly.


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