I’m a Registered Nurse and an Autistic woman, and I run a business called Access Health Autism – helping people to access health care safely and effectively.
This is a significant problem in our community.
Let me set the scene:
It’s 7pm in the Emergency Department, and a young woman approaches the triage desk complaining of non-specific chest and back pain.
She seems confused, dazed, reluctant for a physical assessment,
She won’t meet the nurse’s eyes when asked about her pain.
She refuses pain relief, but the nurse is onto her.
These drug seekers often refuse the first offer to hide their true intention.
She’d better give the doctor the heads-up.
Back up a couple of hours. Imagine now you’re a young autistic mum who’s been feeling unwell for a few days.
Suddenly … Ow! Your chest! Holy crap that hurt.
The Nurse On-Call service tell you that you need to go to the hospital.
Your kids are home though, and you’re a single mum. The only friend who can come and stay with them is an hour away, and the pain keeps on getting worse.
When they finally arrive, it’s all you can do to say your kids haven’t eaten yet and tell her there are noodles in the cupboard.
You drive yourself to the emergency room.
When you get there, the nurse’s questions barely penetrate your brain.
You answer as well as you can, but the link between your brain and mouth isn’t working.
You’ve withdrawn into yourself, trying to deal with the pain, trying not to melt down here. A meltdown just now would really hurt.
They offer you pain relief, but you know how sensitive you are to medications. You really don’t want to add vomiting or a comatose state to your issues.
You can’t explain that just now, though. Too many words.
Oh God, they’re touching you.
How can you concentrate with all these personal intrusions?
Don’t melt down. Don’t melt down. Keep it together.
Please, stop doing new stuff every minute or two. Just do one big assessment and get it over with. Tell me what’s wrong or send me home.
The doctor calls you in. He’s very young.
He closes the door, which makes you feel uncomfortable, a bit panicky.
He starts asking all the same questions. Don’t they talk to each other, these people?
He starts touching you, asking too rapidly about pain – here? Here? How about here?
You can’t process one touch before the next one assaults you.
He tries to assess your abdomen but you flinch away and guard yourself.
You’re crying, trying to tell him you don’t like being touched.
He stares at you in rank disbelief and says, “but you have kids.”
There’s no way you could even start to explain.
He offers you pain meds. You don’t want them.
You try to tell him how sensitive you are but your words don’t come quickly enough, and he talks over you. You decide it’s better to just go along with it, have some damn medication. The pain is shocking; it might help.
When you accept, he sits back, nodding. Smugly? Is that smug or …? I don’t know – I can’t be expected to read expressions just now, surely.
You take the pain meds when a nurse brings them in, and get sent back out to the waiting room. You’ve already been there a couple of hours.
The meds have made you queasy and you feel heavy, and though it’s dulled, the pain is still there.
You’re worried about your kids and the friend staying with them.
The lights are buzzing, one of them is flickering. The noise and flickering make you more anxious.
Clattering trollies. Movement, all the time. Medical equipment alarms. The phone ringing, ringing.
The cleaner mops the floor with some foul smelling chemical. The smell lingers long after they’ve gone.
You wait there for hours.
Patients who came in after you have been seen and gone home.
Have they even looked at your x-ray yet?
It’s getting light outside now.
The pain relief has worn off, but you still feel sick and heavy.
Your head is buzzing from lack of sleep.
All the patients from ED have all left now.
People start arriving for Day Clinic appointments.
Finally, the young doctor of the night before comes out, now accompanied by an older doctor. She has just come on for the day shift, and looked at your x-ray.
She calls you back into the consultation room, and explains kindly that you have a tear in the lining around your lung. It could have been life-threatening, though you’ve been relatively lucky – it hasn’t caused your lung to collapse, or to fill up with blood.
It should mend itself in a day or two, but it will hurt while it does.
You need to be aware of any changes: increased pain, more difficulty breathing.
Come straight back if it gets worse. What, really? Back here? You’re joking.
You ask if you can go home now. She listens when you explain that it’s been very stressful to be there, and that you hate being touched.
She says you can go.
As you walk out to your car, the young doctor runs out to apologise.
Right now, you don’t even know what it is he’s apologising for, and you don’t care.
You just want to get away from him and go home.
* * * * *
The biggest problem with this story is that if you were to ask any group of autistic adults about their health care experiences, this isn’t unusual.
People with a diagnosis of autism die, on average, 16 years earlier than the general population. This is significant. Most of you who live in Australia will have heard of the ‘Close the Gap’ campaign, which aims to reduce the 10 year life-expectancy gap between Aboriginal and non-Indigenous Australians.
If you’re Aboriginal and autistic … well – you can see there’s a lot more work to be done.
Some of this reduced autistic life expectancy is due to comorbid illnesses, which are reported to be particularly common for us. Some of it can certainly be attributed to suicide – anxiety and depression are extremely common in the autistic population, and mental health services may intentionally exclude autistic clients because the services aren’t set up for them. But a lot of premature deaths can be attributed to illnesses which could have been avoided or treated if they’d been managed earlier. Anecdotal reports of serious illness being dismissed as psychological and referred to a counsellor are common, and might be associated with presentation or communication differences.
A history of experiences like the one I’ve just described can lead people to avoid seeking healthcare in the first place.
Hospitals aren’t set up for autistic people.
The sensory experience alone can mean some people avoid going to hospital when they really need to:
Bright fluorescent lights,
Noises, smells, movement.
People, strangers, touching you, often without seeking permission first
So much sensory input, and no time to process one experience before the next happens.
And if you don’t process it properly, you can’t respond to it properly. If you can’t respond to it in ‘real time’, it’s much harder to communicate in a way that makes sense to the healthcare providers.
Asking for changes to your environment can be very difficult; it’s hard to explain that sensory input can actually be painful and cause anxiety, and it’s hard for staff to understand this because they haven’t had it explained to them.
Communication, particularly verbal communication, is often harder for us than others even on a good day. For any formal diagnosis of autism, a clinician needs to identify significant “persistent deficits in social communication and social interaction”.
This means that we often struggle to communicate in the way that most people expect. Many of us lose the ability to speak coherently – or to speak at all – when we’re under a lot of pressure. This can, of course, cause issues during health assessments.
It also means that a rather large number of us use AAC – Augmentative and Alternative Communication devices, either consistently, or when communication breaks down under stress. A friend reported that when she was trying to communicate using her AAC device, the nurses didn’t understand, and were very dismissive of her, because if she was able to “play on her iPad”, she obviously couldn’t be too sick…
Auditory processing delays mean that we need longer to process the questions,
to form answers, and to understand the subtext of what is really being asked.
It’s common in an assessment to have questions fired so rapidly at you that you can’t think to answer them. Hearing and remembering instructions can also be difficult, and this can then be perceived as a problem of compliance with treatments, rather than a communication issue. All health professionals would do well to remember that comprehension and memory are often affected by illness and distress, and that this can be particularly prevalent in the autistic population.
Other people’s perception of us can affect our health care experiences too.
Although the autistic stereotype suggests we’re oblivious to people’s expectations, many of us are acutely aware of the way we need to present to others, because the way we appear to others can be the difference between getting help and being ignored.
A lot of the non-verbal communication that other people seem to understand instinctively, we have only learned from watching people and practicing what we see until it seems natural. This means it can be complex knowing how to act in unfamiliar situations. Medical consults typically occur behind closed doors, so it can be hard to know how to act if you can’t observe that type of interaction.
You don’t want to be presumed to be faking illness when you’re really sick, just because your face doesn’t do what people expect to see. “What do people’s faces do when they have pain? Is this right? Are they going to think I’m faking it?” Believe me, this can be a consideration, even when you have a broken leg or meningitis.
We can also have an unusual relationship with the pain itself.
Many studies have discussed the different apparent pain tolerance in autism, or as it’s often termed, “pain insensitivity”. Someone who may be panic-stricken with a splinter, or scream having a bandaid removed may in fact tolerate significant suffering with very few external signs of pain.
This may mean that we *do* actually have a high tolerance for that particular type of pain. However, it also may mean we’re putting all of our resources into focussing on remaining calm, and not melting down.
It’s one of the persistent problems with the scientific literature on autism that only very recently has anyone actually *asked* autistic adults about their pain experience, rather than relying on a parent’s or carer’s report.
Every autistic person is different, of course, and there may be many and diverse issues affecting our healthcare experiences.
- Executive functioning issues can make appointments and treatment regimes harder to plan for and carry out.
- Under-employment is common amongst us. This creates financial stress and reduces our healthcare options.
- Even the high levels of stress that many of us feel when having to use the phone can be a barrier to receiving timely and effective care.
* * * * *
There is a chasm between the understanding of health professionals about autism, and that of autistic people about health professionals’ expectations; this is a true cultural divide, and not just a lack of knowledge.
It seems as if the two groups are each speaking their own language, with nobody to translate because neither group realises that’s what the problem is.
I’d like to suggest therefore that supports for Autistic people should resemble a Cultural Liaison model: people from within the Autistic community using their experience and knowledge to bridge the gap of access – not just to healthcare, but also to employment and education.
So how can we do this?
* * * * *
I am the director and clinical nurse consultant of a relatively new support service based in Melbourne, designed around the Cultural Liaison model, and drawing on my knowledge of the healthcare system, and my insider’s view of Living While Autistic.
My professional background has largely been in specialist palliative care nursing.
A palliative approach is ideal, really, for someone working in such a diverse group. There is – to quote the World Health Organisation –
- a commitment to “impeccable assessment”, to enable anticipation and early identification of problems early to prevent suffering or distress,
- an approach which sees the whole person within their own context, rather than a series of deficits, and
- acceptance of each person’s way of walking their own life’s journey.
This service uses that commitment to impeccable assessment to explore each person’s specific struggles and barriers, along with their strengths and coping mechanisms to provide suggestions and support to improve their healthcare experience.
The initial assessment takes around an hour, using a validated assessment tool developed by Dora Raymaker and her colleagues at AASPIRE.
I meet with the autistic client – and a friend or carer if they prefer – usually in their own home. I can also do assessments online. Wherever possible, I communicate directly with the autistic client, rather than with carers.
Following the assessment, I provide reports.
The first simply outlines the assessment conversation as a reminder to the client, allowing them to review what we talked about.
The second report makes suggestions for the client themselves, such as how to keep a journal of symptoms and changes, or to access hospital transport services.
The third is for health professionals, explaining the client’s needs, and describes how they can make reasonable and achievable adjustments to meet them.
Following this assessment, I can liaise between autistic clients and their health professionals as a “cultural interpreter”; decoding the knowledge, needs and expectations of each group.
I will also provide education for health professionals, describing the lived experience of autism, explaining why it is to their benefit to understand and to provide accommodations for autistic people, and exploring ways to think creatively in providing safe environments for autistic patients.
Finally, and most importantly, for any health professionals reading this: Your autistic patients need you.
We are, on the whole, competent and able to understand you, but our experience of healthcare is different from most of your other patients.
Trust your patients.
Include them in any conversations affecting them.
And most importantly:
Listen to them.