Autism & Mental Health: taking it personally

[content note: this starts rather depressing but gets more upbeat and hopeful]

I have just spent the last six weeks deeply hyper-focused on writing and promoting a report on autistic people’s experiences of mental health services in Scotland. The findings are deeply troubling (see graphic below), although unsurprising to me, because they exactly echo my own experiences with mental healthcare.

Some key findings and quotes from the AMASE mental health report by me & C.J.Crompton

I have also experienced being seen as ‘too complex to treat’, had professionals throw up their hands, irritated or disbelieving at the degree of distress I reported, because it wasn’t showing on my face. I have struggled with services being sensorily inaccessible, and with being repeatedly misunderstood by practitioners; and I have been rejected for treatment by mental health services with no discussion when they learned that I am autistic.

My very own rejection letter. Number 6 is not a mental health service; they definitely do not have a ‘CBT Clinic’, or specific mental health training. Contacting them “directly” at that point was difficult.

Outside of these personal reminders, I spent a large chunk of the last six weeks immersed in others’ experiences. I read accounts of other autistic people desperate for help and finding nothing, suicide attempts and ideation not taken seriously, frustration at no one willing to listen and everyone misunderstanding. One talked about being accused of lying by their therapist to get medication, even though that was the last thing they wanted. The common theme of not being listened to or understood stood out not just in the context of autistic people presenting distress atypically, and it clearly not being recognised, but also that somehow too many practitioners seem to be effectively blaming us for our ‘complexity’, or for just being different.

I remember once, during an extremely unhappy and stressful period in my teens, going to the Samaritans drop-in in London in the hopes of being able to talk to someone. The volunteer who met with me heard my story, reached across the space between us suddenly and grabbed my hands without warning, so that she could look straight into my eyes while telling me that my life is worth living. The unwelcome and overwhelming proximity and contact led to a panic-stricken meltdown with me hiding behind a chair in the corner of the room. She called security, who promptly escorted me outside into the London night.

Don’t do this.

I didn’t know I was autistic then, so of course neither did that volunteer, who was also not a mental health professional, but a number of people in our survey talked about actual professionals being perplexed, annoyed, or even alarmed at them reacting too little or too much, or not being able to talk about their feelings in expected ways. Many late-identified autistic people reach their autism diagnosis via a series of mental health crises, breakdowns, and burnouts. The eventual arrival at the diagnosis is often greeted with relief, at least to start with — a diagnosis means finally being able to figure this stuff out, right?

When I received my diagnosis at 28, the diagnostician (I forget which kind of professional they were) finished discussing with his colleagues at the end of a long diagnostic interview, turned back to me and said, “yes, you’re autistic.” I did not expect a decision straight away, so only managed to stammer, “oh. Um, so, what now?” He seemed taken aback by my question. “Well, I can send you a letter confirming it if you like.”

Throughout Scotland but also across the UK, a number of local NHS services have prioritised the provision of adult autism assessment and diagnosis (although worth noting that there are also many, many areas where there is still no NHS route to diagnosis for adults at all), but I have yet to come across one that offers any kind of long-term follow-up or effective post-diagnosis support. Through my own experiences, responses from the survey, and involvement with groups that include many other late-diagnosed autistic people, I’ve heard again and again about the chasm of despair that many fall into following the relief and optimism of the diagnosis being confirmed. Some areas have charities that offer programmes aimed at late-diagnosed autistics, providing information about autism, but too often these are led by non-autistic people, with pathologising language throughout. These sessions can too often do more harm than good.

It can be much harder to come to terms with your neurology when it’s described as ‘a triad of impairments’.

In the months following my own diagnosis, after years of thinking I just needed to escape the job/relationship/country I was in, or that things would click one day and I would eventually learn to be like everyone else, I remember despairing at the idea that the meltdowns I’ve been experiencing all my life were a part of me, and might never go away, that I was never going to do things the way so many other people seem to so effortlessly. There were times when I seriously questioned whether it was worth existing at all.

Fortunately for me, I have an extremely supportive autistic partner (plus their family), and things really turned around for me when I started meeting more people from the autistic community via Autscape and online. I started learning about neurodiversity, non-pathologising ways to understand myself and my neurology, and finding new strategies and validation through talking with other autistic people about everything from how loud the world can be to needing to read all about how insect wings fold at two in the morning (answer: extremely intricately). I will never forget the moment, at my first Autscape, when I was talking animatedly about animal adaptations or something like that and suddenly realised that I was feeling completely at ease while chatting with a large group of strangers in an unfamiliar setting — something I’m not sure I’d ever experienced before, or thought I would ever experience.

Insect wings: an example of nature’s origami. (source: wikipedia)

It is so essential that everyone who gets an autism diagnosis gets the opportunity and support to meet and share experiences with others like them, preferably in an autistic space (that is, one created by autistic people where we all take responsibility for each-other’s wellbeing). I think it would be so much better if we were welcomed to the community, being informed about autism by peers who have met many other autistic people, and who present a non-pathologising perspective on our shared neurology, rather than be told everything that’s ‘wrong’ with us by a non-autistic person who can never understand what the things they are describing feel like from the inside.

Autistic Self Advocacy Network’s video welcoming newly-diagnosed autistic people to the community.

Another thing that helped me, post diagnosis, was being lucky enough to get counselling sessions through a local charity with a really good counsellor who, although she didn’t know anything about autism, was open and receptive, and able to listen to what I was telling her. I learnt a lot about advocating for myself, and what being autistic means in terms of my understanding of myself, through learning things from the autistic community, thinking about them, and then talking them through with her. It also helped a lot that she was willing to let us have our sessions outside, walking in the woods with my dog, which allowed me to feel more at ease and talk more freely, without a person sitting directly across from me.

Walking in the woods with the dog made talking and thinking about difficult things so much easier.

The few respondents in our survey who did mention positive experiences with mental health services almost universally talked about the value of them being adapted to their needs and ways of being, and of the professionals being open and empathetic. Dr Claire Evans-Williams, consultant clinical psychologist and fellow autistic, talks about the need for practitioners to have “cultural humility” when working with autistic people — not being so ready to assume they already know all about us, and instead approaching us like someone from one culture learning respectfully about another. I like this phrasing a lot. For far too long, psychologists, researchers, and popular culture have presented perspectives of autism that are purely from the outside — we may be described as being rigid or resistant to change, for example, without any understanding of the motivations within of needing control and certainty in an uncertain, baffling, inconsistent, and extremely noisy world. It’s important that professionals start listening to our motivations and internal experiences, making efforts to empathise with us rather than assuming that we lack the ability to empathise with them.

You might be anxious, ‘rigid’, or resistant to some kinds of change too if the world was this noisy. (from:Some things that make me weird)

Speaking of empathetic non-autistics, another thing that really helps is the ongoing support of a mentor (for about three years now) from my local autism One Stop Shop, accessible once I got my diagnosis. Together over time we are figuring out what works best for me when it comes to employment, energy, social stuff, and anything else that comes up. When I first got my diagnosis, some of my friends reassured me that “it doesn’t change who you are”, but growing up in the neurological minority, surrounded by neurotypical expectations, I have learnt many ineffective ways of doing things and bad coping strategies that I am only now in the process of unpicking. Yes, it doesn’t change who I am — I was always autistic — but it might well change how I do things to better suit how my brain works, and it’s good to have help to figure that out.

This same mentor has acted as a ‘translator’ or advocate in mental health related situations, helping to get across what I’m trying to communicate to therapists, and what they might be asking me, by helping to untangle misunderstandings and miscommunications that come up. Throughout my life, I have received a number of wildly inaccurate therapists’ reports following mental health assessments, with conclusions ranging from the comically factually incorrect (one said I did ballet so that’s ok — I have never done anything that can be described as graceful dancing) to the dangerously presumptuous (my continuous intense interests interpreted as manic ‘episodes’ that needed medicating — thankfully I left the country before that could happen). I think it says something about the impact of having a ‘translator’ present that my most recent report is by far the most accurate I’ve ever received.

The use of such ‘translators’, and having continuity in a mentor, support worker, or other support person who has the time to get to know a person well, and who an autistic person can connect with and trust, was mentioned by several people in our survey, and is part of our recommendations at the end of our report. Improved and autistic-led training for mental health professionals and GPs is desperately needed, yes, and it would be great in the long run to have more mental health professionals who specialise in working with autistic people, especially if they are also autistic themselves, or are good allies who have taken the time to listen to us and engage in our community. However, I’m aware that this does take time, and I also don’t think we can realistically expect every GP and mental health practitioner to become an expert in understanding autistic people. Yet right now, there are many people, autistic and ally, who would make excellent advocates and translators, especially if they were given additional support and training in working with mental health professionals, how the system works, and given the authority to be listened to and respected by the mental health practitioners and services they’d liase with.

Pleasingly organised lego. A metaphor for translating chaotic neurotypical expectations into something calmer and more sensical, or something like that. Also lego is just nice to look at.

I have written a lot here about my own experiences as a way to illustrate in more detail examples similar to what many autistic people are going through, as well as what has worked well for me and many others. As our report shows, far too many of us are not being listened to, taken seriously or understood, far too many being diagnosed and then left to fend for ourselves, and far too many unable to access any kind of appropriate mental health support. We are a population who suffer disproportionately from a range of mental health problems, in my view largely through being in the minority in our experiences of the world and ways of being, exacerbated through being repeatedly misread and misunderstood when we try to ask for help. This can only change through listening to us and working with us. Common doesn’t equal right or normal, and uncommon doesn’t mean wrong or defective. The more that society can talk about and understand difference and different ways of being without immediately pathologising those differences, the more I believe society can become a kinder, more accepting, and in fact more productive place for everyone, with any kind of difference to exist in.

Read our report or a summary of it here.

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