Lost in translation: the unheard needs of patients with communicative differences
Katya shares her experiences as an autistic woman seeking support from a healthcare system designed for the neurotypical.
Content warning: this piece includes mentions of suicide, mental illness, self-harm, ableism, and misogyny.
“A woman who can’t talk sounds great lol”
The reply came when I had texted a mental health support worker to say I had been mute for a week, and would appreciate advice. I was scared—I never reached out for help without being extremely scared—and it had taken me a few days to build up the courage to try and get through to the Mental Health Access Team via the only written means I could (they refused to give me an email address). It took me several hours and a full pack of ice lollies to re-establish a grip on my emotions after receiving the support worker’s reply; I did not get advice on how to regain my voice.
This minor event constitutes a simplistic example of the difficulties I, an autistic woman, have faced in trying to access mental healthcare since developing symptoms of a functional neurological disorder (FND) five years ago. As I explained to the linoleum floor of my General Practitioner’s (GP) office at the time (begrudgingly allowing the GP himself to listen in), my healthy early twenties had been rather unexpectedly interrupted by the onset of muting episodes and daily seizure-like ‘freezes’ that involved losing all ability to move and speak. The condition was psychological but in no way voluntary. If I could have prevented the freezes in which I watched immobile as I was mugged, swallowed the bath water I was choking on, or flashed the high street as a charming group of Jehova’s Witnesses patted my shoulder and failed to notice that the skirt of my dress had decided it didn’t like my legs after all, believe me, I would have.
“I have been shouted at by health professionals, had pen and paper taken from me by a paramedic refusing to believe I couldn’t speak, and been told I’m wasting my time by a nurse watching me on the ground as my head convulsed against the metal edge of an entirely moveable piece of equipment”
Trying to communicate by whatever means I could and still comprehensively failing—risking derision, incredulity, or condescension along the way—swiftly became a standard part of my healthcare experience. I have been shouted at by health professionals, had pen and paper taken from me by a paramedic refusing to believe I couldn’t speak, and been told I’m wasting my time by a nurse watching me on the ground as my head convulsed against the metal edge of an entirely moveable piece of equipment. One day, in the back of an ambulance, a paramedic hurt me repeatedly and deliberately, threatened to cut my top off, and said he would hurt me more if I didn’t ‘calm down’. It resulted in the same resounding success you’d get if you shouted at someone to stop having a broken femur while occasionally poking them with a sharp stick. Writing to a friend soon after the event, I tried to explain the impact:
“After I was mugged in a freeze, I was scared because I felt like there were monsters out there that I was vulnerable to. Now I’m scared because I know I am the monster.”
I had been hurt by someone so socially respected, I couldn’t on an instinctive level process it without seeing myself as in the wrong. The bright and glittery Thank You NHS (National Health Service) signs that seemed to wallpaper the streets during COVID hammered home to me daily that I was the failure because the medical professionals couldn’t help me, and something intrinsic to me must warrant being hurt and blamed by Our NHS Heroes.
“I had been hurt by someone so socially respected, I couldn’t on an instinctive level process it without seeing myself as in the wrong”
Almost without exception, where my medical encounters have failed, it has been with dedicated professionals, many of whom I have liked and respected enormously. The failure was not theirs. But neither, contrary to my gut reaction, was it mine. It is a systemic failure that prevents autistic patients from accessing mental healthcare (related barriers to healthcare as a whole are examined, for example, here). Given that autistic people without learning disabilities are nine times more likely than the general population to take their own lives, this is like making the entrance to a geriatrics ward a twenty-foot climbing wall followed by a series of monkey bars from which you, the patient, can somersault down to your hospital bed. That is to say, the vast majority of mental healthcare is inaccessible to the point of actively damaging a key group it should be serving.
It's understandable why this is. Many autistic people have specific needs around sensory surroundings, routine, change, familiarity, etc. that an under-resourced service would be hard-pressed to meet (although attempts would be appreciated). But even setting that aside, we are still left with the fundamental fact that mental health treatment requires at the very least some communication. This is a huge barrier to a group whose spectrum of communicative styles and abilities can diverge so keenly from the norm that we are barely understood as human even by some of those who study us.
“One of the difficulties faced by those of us who do not end up in specialist services for autistic people is that we can look normal enough for some of our needs to fly under the radar”
One of the difficulties faced by those of us who do not end up in specialist services for autistic people is that we can look normal enough for some of our needs to fly under the radar. Before being actively hurt in an ambulance, I could walk into a monthly catch-up with my care coordinator, smile, laugh, and fluently answer her questions. It was perhaps impossible for her to realise that if she didn’t ask me outright, I wouldn’t know to tell her that I was self-harming daily and living with a suicide note tucked into my favourite book. She didn’t know that, unendingly law-abiding as I was, I would quietly tolerate medications that made me suicidal and coping skills sessions that varied from dull and uncomfortable to actively unhelpful and perhaps inappropriate, not saying I wanted to stop them until asked. Unused to expressing myself emotively, I was frequently not believed when I dispassionately listed symptoms, and it was only when I was mugged that my daily freezes began to be treated as a potential problem.
I was brought up to be neurotypical, and, like many autistic people in this position, I spend most of my life masking—that is to say, mimicking the behaviour of those around me and trying to act ‘normal’. My ultra-enthusiastic sensory responses get themselves into a tizz every half hour, and in order to avoid accusations of attention seeking, rudeness, or just plain freakishness, I spent my childhood learning not to express discomfort. Add to that the fact that, due to some of the less-than-pleasant experiences described above, healthcare settings are very much unsafe places for me, and you get someone who is, with the best will in the world, not the therapist’s dream. This, along with my autistic need for ultra-specificity in order to know what information is being sought, results in such minimalistic responses and lengthy silences that I sometimes have to be reminded to speak at all.
“I have had phenomenal luck in reaching this point, when other autistic people don’t have access to NHS mental health services at all due to their neurotype”
After years of sporadic appointments that varied from useless to actively damaging, I reached a service and doctor with the resources, Autism Team support, and patience (/stubbornness) to plough through further years of painfully slow progress and get to a point where I trust them and have ways of communicating with them. I’m now able to access a lot of support from them by email, and, for the first time, don’t feel I need to protect myself from the people trying to help me. I have had phenomenal luck in reaching this point, when other autistic people don’t have access to NHS mental health services at all due to their neurotype, and those who do may never work through the barriers to their needs.
As autistic people in medical settings go, I was hugely privileged from the start. Along with the general demographic advantages of being white, cis-gender, and native to the country where I am seeking healthcare, I am in further privileged subsections of the autistic community. For one thing, I’m normally able to speak. My denial of my own discomfort also never stretched to complete alexithymia (difficulty identifying one’s own emotions), as it does for a large number of autistic people, so at least I tend to know myself the problems I’m struggling to communicate. Prior to developing functional symptoms, I had never had any sort of mental health intervention, so didn’t have the hugely problematic relationship with therapy that some autistic people cultivate as a result of being given non-tailored techniques that implicitly invalidate the actuality of day-to-day stressors often invisible to their allistic therapists. The worst of my experiences in medical contexts doesn’t come close to the problems others have had in medical and similar settings—I have never been institutionalised or restrained, for instance. These examples may sound like I am drawing attention to the worst-case scenarios, but with the extremely high representation of autistic people under section and the authorised use of restraint in schools, hospitals, and care institutions that cater to autistic people, I consider myself to be in a very lucky segment of my community not to have encountered these things.
Image courtesy of Unsplash
So, if I have found mental healthcare close to prohibitively inaccessible, it scares me to think what others in my community must go through. As I have said above, the problem is complex, given obstacles to perhaps the primary currency of mental health assessment, monitoring, and treatment: communication. The solution will doubtless be equally complex, and, as with all equality of access issues, it presumably will involve ongoing conversations and constantly shifting precepts.
In my wholly amateur opinion, a reasonable way to start circumventing some of the obstacles is to increase the involvement of autistic people themselves in the design and implementation of healthcare processes for autistic people. The double empathy problem would indicate that we have better chances of understanding those of our own neurotype; at the very least our neurotypical practitioners might benefit from autistic translators. But more fundamentally, there needs to be an acknowledgement that the mental healthcare system, with its over-reliance on one, inaccessible brand of communication, fails those who communicate differently.
“Capacities to speak, hear, understand, navigate expected conversational conventions, express thoughts and feelings, and do so in a manner and a language used by your healthcare provider, are all resources. It is so often assumed that everyone has them that we can forget we are using a currency to which some have no access.”
This is not restricted to autistic patients, of course. Capacities to speak, hear, understand, navigate expected conversational conventions, express thoughts and feelings, and do so in a manner and a language used by your healthcare provider, are all resources. It is so often assumed that everyone has them that we can forget we are using a currency to which some have no access. If you are lacking in any of these resources, you have the same kind of access to mental healthcare as if the team were based in a motorway services and you didn’t have a car. Whatever the solutions to this state of affairs, we must start with an acknowledgement of the resource demands that services are making, the resource limitations of any of their potential users, and the fundamental failure where the demands cannot therefore be met.
For mental health practitioners, and autistic people seeking help communicating their needs in mental healthcare settings, the National Autistic Society’s Good Practice Guide is an invaluable resource.
Those affected by subjects mentioned in this article may find the following support avenues helpful:
Neurodiversity Self-Advocacy: an autistic-led United Kingdom (UK) organisation providing a vast array of information resources, as well as a forum for neurodivergent people, free mentoring, and opportunities for autistic people to become paid and trained peer mentors.
National Autistic Society: a major UK charity providing information and resources on autism for autistic people, carers, professionals, and other interested parties. A forum allows members to discuss and socialise, and their website signposts to other organisations and resources available to support autistic people and their loved ones. Their website also signposts to advocacy services for autistic people struggling to communicate their needs in (for example) healthcare settings.
SHOUT: a 24/7 UK text-based helpline, accessible to users who struggle with phone-based helplines.
Samaritans: as well as their phone-based helpline, Samaritans can be reached 24/7 via email (or, indeed, letter). N.B. responses will not be instantaneous for users contacting Samaritans by written means.
