If your child has autism, the GP is likely to be an important person in your life. For most families it’s the GP who makes the referral that begins the all-important diagnosis process; it’s also likely to be the GP who refers your child for occupational therapy, physiotherapy, dietary support and other interventions that can make life easier for your son or daughter.
Autism doesn’t necessarily mean poor general health; many children with autism are as healthy as their peers and never get anything worse than the odd case of the sniffles.
When you don’t need to see the doctor very often, the doctor can be a near-stranger. Which would be fine – it’s good to have an-illness free life – except that on those occasions when you do have to see the doctor, you may find yourself supervising a meeting between a child afraid of strangers and a doctor who doesn’t know any of your son or daughter’s quirks.
Introducing the two can be a delicate business.
Anticipating the appointment
When a kid has autism, anticipation can tip very easily over into anxiety. If your son or daughter has the language skills to understand then you’ll need to prepare them for the fact that they have a doctor’s appointment; but if that leaves them worried about whether it’ll go as it should, what the environment will be like and what will happen when they get there, you’ll be dealing with a worried boy or girl.
A trip to the doctor can feel, for a boy or girl with autism, like a step into a threatening unknown.
This is all the more stressful if the medical appointment disrupts a regular routine, such as having to take time out of a school day. Routine and ritual can be one of your child’s most cherished safeguards against anxiety, and when you have to take them out of a familiar schedule into an unpredictable place, they’re liable to feel very anxious indeed.
Waiting to be seen
For a child with sensory sensitivities, a waiting room can be a challenging place. Fluorescent lighting can hurt sensitive eyes; medical products can have strong and disturbing smells; telephones, buzzers, background conversation and crying babies can all hurt sensitive ears.
Meanwhile, you’ll have to deal with an unpredictable waiting period, as even the best GPs can run late. Unstructured time is often uncomfortable for children with autism, and a waiting room is an environment where they’re required to sit still, control their voices and not mess with anything, surrounded by strangers and out of their comfort zone.
Doctors have to examine you. Children with autism often do not like being examined. It’s quite common for the child to feel uncomfortable with other people getting into their personal space at all; even if they don’t mind being touched.
A child may not be able to explain their own symptoms. The GP might manage to do some prodding and testing, but again, sensory issues can come into play: just as a child may be hyper-sensitive to some things, they can be ‘hypo’ sensitive – i.e. under-sensitive – to others. If this includes a high resistance to pain, they may not show the usual reactions to, say, pressing on an inflamed stomach, making the problem harder to diagnose.
Finally, there’s an even more basic problem: to be examined, a child has to stay still, and for some children with autism this is extremely difficult.
What do you do about it all?
Visiting the doctor can be stressful, but it’s one of those things you can’t cross off your list. Preparation is generally the best approach.
It’s helpful to build up a pre-existing relationship with the GP and the surgery so they know what to expect. If you can, arrange one or two particular GPs to be your son or daughter’s regular doctors so everyone knows each other.
You should also get your son or daughter familiar with the surgery itself. If it’s a new surgery, bring them in for some visits (ask beforehand just to avoid having to explain once you’re actually there), drive or walk past so they get used to the route, and generally establish the surgery as a safe place.
Booking the appointment
Make sure the staff, especially reception staff in charge of the waiting room, have a clear picture of what sort of needs and behaviours they’ll be dealing with. Ask if they have a quiet area where you could wait.
Consider booking a double appointment in case your son or daughter’s anxieties cause complications that slow things down.
If waiting is really a problem, maybe ask for a time that’s less subject to delays, such as the first appointment of the day or the first appointment after lunch. If waiting in the surgery would really be a nightmare, ask if you could wait somewhere else – for instance, in your car parked in the car park – and be called on your mobile phone when it’s time to go in.
Preparing your son or daughter
Mark the appointment on the calendar. If your surgery has long waiting times, you might want to do this a few days before the appointment rather than as soon as you’ve booked it; that gives your son or daughter less time to worry about it.
Try using a social story to explain what will happen. Don’t forget to include the concept of ‘waiting’; you might want to bring a favourite distraction such as a tablet computer or music headphones and explain that your son or daughter can play with them while waiting.
Use visual prompts to lay out all the steps that the visit will involve: travelling there, walking into reception, telling the receptionist you’re there, waiting for the appointment, how you’ll know when it’s your turn, going into the GP’s office and so on.
Consider bringing along another trusted adult to help look after your son or daughter so you can concentrate on listening to the doctor. If you have several questions, make a list in advance so that if the appointment is chaotic, you don’t forget what you meant to ask.
Waiting for the appointment
Bring along toys, a tablet computer, drinks and snacks; pleasant distractions not only help your son or daughter feel calmer during the wait, but also start to build up the association that the surgery is a safe place where you get nice things.
Be reassuring and prepared to explain multiple times what’s going to happen next. If you’ve been using visual prompts, you might want to bring them along to support your explanation.
If possible, find out approximately how long the wait will be and then use a visual countdown timer for your child to reduce their anxieties. However, if your surgery isn’t always reliable in their estimates, this is one that can backfire, so use your own judgement.
During the appointment
Make sure someone – either you or the GP – tells your son or daughter what’s going to happen before every stage of the process. If language is an issue, be ready to act as translator. You may need to explain your child to the GP, but you might also need to simplify some of what the GP says to your child.
You may also want to act as an emotional/behavioural translator. You know what your son or daughter’s behaviours mean, but the GP isn’t so well versed in their personal quirks; if, for instance, they start stimming, you might need to explain what’s going on.
If there are physical examinations, use calming techniques – whatever works best at home – to reassure your son or daughter. Be alert to signs of stress and be prepared to ask the GP to pause if it seems to be getting too much. Don’t worry about ‘wasting the doctor’s time’; trying to do things too fast is only going to cause problems. Be ready to ask the GP to slow down or step back if your son or daughter seems to be feeling hustled.
Are there any resources that might help?
This Pinterest page has some useful visual resources for visiting the GP.
A useful visual aid to use in preparation for the visit to the GP.
Check out this social story in preparation for a visit to the GP.
Although it's designed with autistic adults in mind, there's some useful general information for GPs about autism in this information pack. If your own GP’s knowledge could use a little help, this might be a good resource to give them.