As a parent of a child with autism who also happens to be a GP, my practice profile has become dominated by children on the spectrum. As a result, I have been exposed to many opinions (many of them unsolicited!) on what parents and carers of children with autism think about how the medical community supports them – or not.
Unfortunately, it seems, as doctors, we often don’t do so well. Not always, but often, parents and carers of children with autism feel let down by what happens at the GP practice, or the emergency department, or even the paediatrician’s rooms. This is certainly borne out by the literature in this area. Why is this so? Well, I think there are several reasons, so let’s have a chat about them.
Firstly, doctors, including GPs, are often pretty old. And autism is not, well not in a historical sense. Autism was an uncommon diagnosis until as recently as twenty years ago, and now it seems it is everywhere. Does this mean it is increasing? Well, we actually don’t know, as what we are calling autism now, with its broad spectrum, is not the same condition as what we thought it was back then. So we are comparing apples with oranges.
This also means that many doctors received their training back in a time when autism was a relatively rare diagnosis, and awareness and understanding of it in the medical community was poor. It is getting better, and doctors are required to commit to continuing professional development, but it is hard for GPs to re-skill in all the rapidly changing areas of medicine.
Also, as soon as a diagnosis is given, parents will turn to the vast amount of information about autism that is readily available on the web, unfortunately much of it misinformation. They may be dismayed to realise that their GP may have nowhere near this level of knowledge. However, while the parents of a child with autism may be rapidly upskilling themselves into experts on autism, particularly with respect to management options, the GP remains an expert in their own right. The family doctor remains an expert on general medical issues (which autistic children still have) and also navigating the medical system. They also still, being trained in medical science, have a sense of what is scientifically valid and what is not.
So what does this mean to the average family of a child with autism? Don’t expect your GP to have extensive knowledge on intensive early intervention options, the particular sensory challenges of kids on the spectrum, or PECS cards or GFCF diets or stimming. But do expect them to listen to you, to care about what is happening to your child and your family, to find out answers to questions you are having trouble finding, to be your and your child’s advocate.
Yes, there will be forms to be filled out, referrals to be made, and care plans to be prepared. But a good quality family doctor can do a lot more for you than that. Use them for what they are good at. Ask them to get to know your child. An autistic child may be harder to examine, to assess, to conduct investigations on and treat. Having a familiar face involved can go a long way to help this run smoothly.
Also, use them as a sounding board. When you deal with lots of different areas of medicine, like a GP does, you get a feel for what ‘smells right’ in terms of being reputable and scientifically valid. Remember, while a treatment or theory you read about might sound promising there are many different agendas driving the information online, and not all of them will necessarily have your child’s best interest at heart.
So, don’t necessarily expect your GP to know that much about autism, but you should expert him or her to pay attention to what is going on and to give a stuff. And if they aren’t, well maybe you should find another one who does.