I hadn’t planned to write on this topic but my week took an unexpected turn. After developing symptoms of meningitis I was admitted to hospital for observations and to begin treatment in case the diagnosis was confirmed. Happily all the test results so far are clear. I feel much better and have been allowed home to care for Dylan while continuing treatment as an outpatient. Being in the hospital gave me space to reflect on the implications of medical emergency for autistic people and their carers and in this post I re-visit Dylan’s hospitalisations in order to draw out positive practices and challenges.
The Challenge of Medical Emergency
Was your stay planned or an emergency? the hospital administrator asked me last week. Emergency, I replied, remembering how one of my first reactions to being told to go to hospital was ‘thank goodness this is happening on respite night’. Getting sick if you’re a carer is problematic; it’s difficult to rest and hard to care. In a situation where you aren’t able to go on caring the best scenario for the person with a disability is that they can be somewhere familiar or that the emergency leaves their routine unchanged. Last week, therefore, part of me felt lucky.
Although the emergency focused on me rather than Dylan, he would have found the situation difficult had he been with me. Medical emergency is challenging for Dylan in two ways: firstly the unpredictability of the situation is problematic and secondly Dylan is uncomfortable in clinical environments. I don’t think this is specific to autism, necessarily; there are plenty of non-autistic people with medical phobias and some who avoid going to hospitals even to visit. There are also lots of people who dislike specific medical procedures, such as needles, and some who avoid all interventions including drugs. Why should I be surprised if Dylan has similar reactions? There may, however, be specific features of the medical environment which explain Dylan’s discomfort. Furthermore, while non-autistic people may manage their anxieties by avoiding medical treatment, providing this opportunity to an autistic child or adult with a learning disability raises ethical issues and requires judgement and courage.
Reassurance and Support
Since his hospitalisation for meningitis as a baby (which you can read about here) Dylan has received treatment for medical emergencies three times. On one occasion, when Dylan was 13, this was due to illness. Dylan presented with symptoms which in another child may not have given cause for alarm. Had it been my daughter, for example, I would have been able to ask her how she felt and make judgements about the seriousness of her condition on the basis of her responses. With a child who is ‘non-verbal’ and has a learning disability, however, this is not an option. It is only in the last few months that Dylan has learned the word ‘sick’ and connected it with his ‘tummy’, and even now I’m not convinced he is applying it to illness (I suspect he might be using it as a word for hungry).
Throughout Dylan’s childhood I have had to rely on observational data when making judgements about his health. In this situation I have sometimes wanted reassurance from doctors that my non-professional judgement was OK. So when, on this occasion, Dylan collapsed and briefly lost consciousness I decided to get him to the hospital. This is an example of me accessing medical services for support; although being at the hospital made no difference to Dylan’s care (he wouldn’t accept any intervention) I found being there helpful. Carers of learning disabled and non-verbal children may sometimes need this sort of reassurance and support from medical professionals.
The other two occasions when Dylan was hospitalised were due to accident rather than illness and both times were a consequence of him having ingested non-edible substances. These incidents are linked to Dylan’s disability in that ‘pica’ (eating non-food items) is something which some autistic people demonstrate. Dylan likes to mouth, chew and sometimes swallow a range of substances including paper, cardboard, plastic and glass. Because this is something which is known about Dylan, these incidents could be regarded as arising from lack of supervision, though the reality of caring for someone with high levels of need is that accidents can still happen.
At the time of the first incident Dylan was seven years old. It was shortly after Christmas and I’d taken care to supervise Dylan around the tree. When I took the tree down, however, I decided that I didn’t want to put away a blue glass icicle. I’d been enjoying it on the tree and thought it un-Christmassy enough to hang permanently in the bay window. So that is what I did, without considering that it might be a hazard. Later that week I walked into the living room to find Dylan sitting on the sofa munching his way through the icicle having climbed up to reach it down from the bay. It was mostly already eaten; just the bulbous globe of the bottom of it posing more of a challenge to Dylan’s chomping. I remember the measured panic I felt, battling to stay calm and deal with the situation while feeling complete horror that my child had eaten glass. Even at this point I was aware of a voice in my head telling me that however bad I thought the situation, it would get worse; although this was the first emergency since Dylan’s autism diagnosis I knew he wouldn’t tolerate any medical intervention.
Letting Dylan Decide
I knew this because Dylan had consistently resisted all health procedures and treatments; since his autism diagnosis I hadn’t been able to administer a single dose of Calpol, take his temperature, put on sticking plaster or apply cream. Dylan would not drink or eat anything in which powders or other medicines had been concealed, even if they were (allegedly) colourless, odourless and tasteless. Various attempts at medical observations had been made during visits to clinic. We sometimes managed to weigh and measure Dylan but were never able to approach him with a needle (to take blood). An attempt to conduct an ECG when Dylan was experiencing ‘absences’ failed due to his refusal to wear the cap and clips. Determined to involve Dylan in trials of medical and alternative remedies I had persisted with the administration of some tablets and liquids by syringe. While this was occasionally successful I had stopped these by the time of the blue glass incident, judging the distress it caused not worth the promised benefit.
As noted previously, resistance to medical treatment is not the exclusive domain of autistic children. My daughter, for example, had a terror of needles. The practice at the Steiner Kindergarten she attended was that the children moved onto sewing having completed a pom-pom. These crafts were linked to key stages in child development and intended to support specific gross and fine motor skills as well as corresponding with socio-emotional maturity. The Kindergarten leader and myself were baffled when my daughter refused to move onto sewing with the rest of her peers, preferring to begin another pom-pom. Many weeks later, weary with winding wool around the enormous circles of card we had given her, my daughter explained that she didn’t want to move onto sewing in case she accidentally pricked her finger. She didn’t want to fall asleep she told me – she really didn’t want to fall asleep for all that time.
If the story of Sleeping Beauty should affect my daughter so powerfully, how much more might this be the case for my autistic son? I have written elsewhere about the extent to which Dylan appears to learn from Disney and it’s possible that this may be the source of his fear of needles. Whatever the reason, Dylan had determined his own relationship with the health service which was that there would be no medical treatment or intervention. The blue glass incident was important in that it was the first time his preference was going to have to be challenged; my child had eaten glass and doing nothing was not an option.
Look But Don’t Touch
As predicted Dylan did not allow the hospital doctors to make any medical observations following the incident; they couldn’t take blood samples, monitor blood pressure or temperature or examine him physically. The only observations which proved possible were visual. Clearly this is challenging for a hospital environment where protocols involve taking basic observations of patients. However, I have always found staff to be understanding and flexible when treating Dylan. A positive outcome of the blue glass incident was that we discovered Dylan was prepared to accept other procedures that didn’t involve touch, such as x-ray.
This reminds me, again, of the importance of sensory experience to Dylan. In the absence of linguistic or cognitive supports to understanding, Dylan was using his emotional and sensory intelligence. For him this meant resisting physical contact, perhaps in order to maintain his boundaries. This makes sense to me in the context of pain and anxiety when it is natural to withdraw and to defend your physical space and self.
The x-ray pictures showed the slivers of icicle in Dylan’s digestive system but these were not felt to be cause for concern; he had not cut his mouth on the glass and the pieces he had swallowed would pass through his system without risk of blockage. Dylan tolerating the x-rays had an unexpected benefit too; they revealed something of more concern to the doctors than the Christmas decoration. Dylan, apparently, was chronically constipated. From a medical emergency, then, an opportunity emerged to monitor Dylan’s health more generally. It didn’t make a difference to Dylan in that he detected and rejected laxative powders wherever I hid them. However, it raised our awareness of Dylan’s digestive system and prompted increased efforts to vary Dylan’s diet.
I had stopped worrying about Dylan’s bowels when one day (when he was around twelve years old) I was shocked to discover enormous ‘flowers’ in the toilet. The blossom-like structures filled the whole bowl. Stunned, I telephoned the respite provision from which Dylan had just returned. They had also found the toilet flowers and had traced these to another young person. The source of the flowers were the bean bags in the lounge; Dylan and the other child had found a way to remove the polystyrene balls from the inner bag and had consumed some of them. They had passed through the digestive system easily enough but were unflushable and had absorbed water to produce these huge flowers.
Although it was reassuring that the balls had passed through it was obviously not something we wanted to happen again. This became a frustration throughout Dylan’s teenage years. Periodically I would find polystyrene balls in Dylan’s pockets and remind the school and respite provider of the risk to Dylan. However, when Dylan was 18 he came home from school one day strangely quiet. In his home-school book a member of staff (not realising the implications) had described how Dylan had emptied polystyrene balls from a bean bag. I had barely had chance to check Dylan’s pockets before he started vomiting.
Dylan had to go to adult A&E this time. Once again I was impressed by the adjustments made for Dylan which included bringing Dylan forward in the queue, allocating us a private room and not attempting to make observations which Dylan didn’t want (temperature, blood pressure etc). The other thing which staff realised was that it was better if they could support me to do the nursing as I was Dylan’s trusted adult; they explained what I needed to do and supported me with his care through the night.
Duty of Care
The bean bag incident was more serious than the blue glass. Dylan had consumed large quantities of polystyrene balls which meant there was a risk of blockage. If this were the case, the situation might require surgical intervention. I knew that my duty of care to Dylan meant that if this was what was needed medically, I would have to over-ride his preference for zero intervention. No parent would want to be in this situation. My relationship with Dylan is built on trust and advocacy – being put in a position where I might have to break that trust or act against his will (even if this is necessary or in his best interest) is distressing. Fortunately on this occasion Dylan was again amenable to x-rays and on the basis of these the doctor was happy not to operate. While the medical intervention which Dylan will tolerate is minimal, so far it has proved to be enough.
Last week in the hospital my main worry was what the implications for Dylan might be if my tests for meningitis came back positive. That fear has receded now, but on Thursday night I lay awake turning over in my head how the doctors could offer Dylan prophylactic treatment without using a needle. Was there a penicillin-based cream, I wondered, which I could persuade him to rub on his body? Might he accept an oral dose perhaps? Only recently, and out of the blue, Dylan had pointed at the medicine cupboard and said ‘Po Dy-an, meh’. Stunned, I had opened the cupboard and offered him a spoonful of cough medicine which, after a bit of hesitation, he swallowed. Last week I clung to the memory of that 5ml hoping it might prove timely paving for penicillin if required.
Turning Emergency To Opportunity
It’s likely that there will come a time when Dylan needs medical treatment which goes beyond the visual investigations he currently tolerates. It’s also possible that at some point I may have to support him through an intervention which he requires but doesn’t want. It’s not easy to prepare for these scenarios. This week, however, I have tried to capitalise on events by involving Dylan in my out-patient appointments. Dylan has watched the nurses insert and remove butterfly needles in my arm and has talked to me about the ‘meh’ making me better. I have taught him the signs for injection and medicine. The nurses have given Dylan a positive experience of the hospital environment and procedures; he is fascinated by the idea that there are beds in the building and by the variety of medical equipment. Dylan has enjoyed our visits and more progress has been made to lessen his anxiety about the medical environment in the last week than ever before. Hopefully, in this way, I have turned an emergency into an opportunity.
We usually access medical services in a non-routine and unpredictable way. An emergency situation is not a good learning environment and it would be surprising if autistic children and adults developed positive feelings and confidence from such a context. Perhaps there is more we could be doing, on a routine basis, to support children and adults like Dylan to access medical care. In writing this post I have been struck by the following issues specifically:
- the medical environment may present sensory-based challenges for some autistic people
- medical investigations tend to be touch-based which some autistic people may find difficult
- knowledge of medical procedures may be based on learning from fictional sources (such as film) and a potential source of anxiety
- where zero or minimal intervention is a preferred option carers need support from professionals to achieve this
- where treatment is required the relationship between carer and autistic person may face specific challenges
- carers get sick too!
Thank you for reading
I wish you emergency-free days!