This post is simply a bucket of anecdotes about my (an autistic woman’s) encounters with mental health services.
My first encounter with the mental health service. I’m eight years old. The counsellor – I think her name is Diane – has a great big blue nose piercing. There is another lady in the room who writes on a notepad and doesn’t say anything. Diane says it’s alright if I want to draw or play with Lego while we’re talking, but I don’t. She also says it’s alright to cry. There’s a tissue box in front of me, and I do cry, a lot, though I’m not sure why. Mother is in the room with me the whole time we’re talking. When I get back to school, the teacher makes something up about where I was to tell the other students. It was alright.
My second encounter. I’m in a very small room with peeling paint around the skirting boards, just me and the counsellor. She has grey patterned tights. I spend a lot of time looking at the peeling paint and the tights, because I don’t look her in the eye. She’s alright too.
My third encounter. This one is a man with a beard. I don’t like him because I can’t understand what he’s saying or what he’s doing with his face. I have a lot of appointments with him, and Mother says he wants to do some of them in our house. He must have thought that that would make me feel more comfortable than going to a new place, but in fact it makes things much worse. He’s in my HOUSE, invading a place that has been free from counsellors so far.
One time when we have an appointment in the hospital, I’m in tears because he’s asking me something and I’m trying to tell him I don’t know the answer but he keeps asking me anyway.
- He: I think your parents would like you to keep trying.
- I: I don’t care!
- Mother: Maybe it’s time to go home.
That evening, I notice Mother crying at the top of the stairs. I’m very surprised – this might be the first time I’ve seen her cry. My dad says she’s upset about my counselling. I was not expecting that at all and it’s unsettling. There are no appointments for a long time after that.
I don’t know how old I was when Mother started giving me books about Asperger’s Syndrome. I only remember slowly edging towards the door while she talks to me about getting a diagnosis until I slip away.
I have two more counsellors in secondary school. For the first two or three years of secondary school, I keep varying wildly between thinking everything is fine and feeling terribly sad and disjointed. My attitude has changed from the childish “I’m different, and everyone else should be more like me”, to the typically teenage “I’m different, and oh no, I am probably the only person in the world who has ever felt like this.” But I don’t manage to articulate this until I’m fifteen or so. In the intervening time, my little brother has been diagnosed, so we’ve learned a lot more about it. Mother and I have a big talk with a member of staff, and I think at this point, we’re acting on the assumption that I have autism, even without a diagnosis.
- My dad: Do you want to hear what they said at your first assessment? Or would you rather not know?
- I: Tell me.
- He: They say you’re “borderline”. So – there you go.
So, I can act as if I have it or act as if I don’t. That’s both helpful and unhelpful at the same time.
Autism is not really a mental health problem, but they’re often approached in the same way. My fourth counsellor is called Julia. I like her: it’s nice to have someone to talk to every week, and she has some interesting ideas. She seems to think for a while that I’ve got some great and traumatic secret that I’m hiding from her. But that year I have a pretty good friendship group, so when things are looking up for me, I ask to stop. She is very excited, seeming to think that all my problems are over, and asks for a hug. I say no and leave.
The friendship group gets dissipated when some of us go to different sixth forms, and in my final year I ask to start counselling again. This fifth one, I can’t remember her name, but she wears a lot of black eyeliner and has a shaggy purple carpet in her room, and every other question she asks is ‘And how does that make you feel?’, even though I’ve tried to explain that it’s really difficult and unnatural for me to dive down inside myself and dredge up some vocabulary to describe what I find there. The worst thing is that she keeps telling me ‘The answers are within you’ as though this is a children’s book. I’m pretty sure that if they were there then I would have found them already. What I’m asking for is an insight of her own, not just more of myself reflected back at me. ‘I think you’re not going to give me the kind of help I’m looking for,’ I say, and stop seeing her. Then I join a creative writing club and make some different connections and things get better again.
Reading books about autism is sometimes helpful and sometimes not. For one thing, everyone admits that there’s a sad lack of understanding about girls with autism, because in past research we’ve been better at hiding it. Most of the stuff seems to be geared towards maths-and-computers-oriented, male children, not humanities-oriented, female teenagers. I find only one webpage about an adult woman being diagnosed. I find it too uncomfortable to read ‘The Curious Incident of the Dog in the Night-Time’ because I don’t like the element of voyeurism – it seems like neurotypical people are peering in to see what autism is like and be glad they don’t have it – and because it reminds me too much of my own diary on a very bad day.
Finally, I get an appointment for an assessment. I asked for one, in a very rare moment of decisiveness, so long ago that I’d forgotten about it, but you know how it is: mental health services are always swamped, and I’m almost nineteen. There you go – time to find out whether I fall on this side or that side of “borderline”. First there are some questionnaires for me, my family and my teachers to do. My mother drives me to the appointment and I get a violent start of déjà vu when I recognise the brightly-painted fence, looking very tiny now, at the same centre I went to when I was eight. By now, I know exactly what the centre staff are doing to try and put me at ease. When I get to the room where the assessment is going to take place, I cry and cry. The lady wants to make sure I’m definitely alright to go through with the assessment. I’m frightened that I might find out I don’t have autism. That I’ll be told that actually, I’m completely normal, and just reacting to things in a strange way for no reason, and that I’ll have to figure everything out for myself from now on. She draws – I’ve seen this many times before – a diagram of the autism spectrum and says that, even if I fall a little short of the arbitrary marker labelled ‘Asperger’s Syndrome’, no-one’s going to tell me that I should be sorting myself out better than I have.
The assessment itself is lots of talking about a meaningless variety of topics just to see how I talk, and some tasks which are used for all ages of children so they seem strange to an eighteen-year-old. I’m a bit worried that I might use my understanding of autism to skew the results somehow. For example, when I do a block puzzle and she innocently asks me whether the shape reminds me of anything, I know that some autistic kids have trouble seeing a shape in something that it isn’t. ‘It looks a bit like Batman,’ I say.
There’s a wait of a few weeks to get the report. I’ll tell you what the worst part is: the report. I get my diagnosis, which I now know is what I wanted, but it takes me a few days to get up the courage to read about myself pinned down onto a piece of paper like that. ‘Alison made some attempts to gain and hold attention, but it is impossible to have a normal conversation with her.’ Hmm. Damning. It was something like that – I haven’t picked it up in the three years since. That’s why I still have a disproportionately strong reaction against things like the Myers-Briggs test and “Which Harry Potter house are you?” quizzes: there is a terrible finality to being told in writing what you’re like.
Post-diagnosis, the biggest change in how I view my autism has been becoming a Christian. But that is for another day.
The first time I had to sort out my new identity as a “disabled person” was coming to university. I was told at length about the support services available, and decided – part consciously, part instinctively – to avoid them at all costs. At the end of first year, at the same time as coming to know Christ, I was having some second-hand struggles in a particular friendship. As people often do, I left it until it got so bad that I couldn’t function as a person anymore, then I visited service X, who referred me to service Y, who referred me to service Z. X was just someone with a pastoral role in my college, but it was still precious because it was the first time I had been invited to engage with the whole thing as an intelligent adult. Y was an actual counsellor. As soon as I entered her office I began to cry as a conditioned response. She was concerned and kept trying to counsel me, but I was having none of it – just got the referral and left. Z was the autism specialist. I saw her twice over the next year and a half. Essentially, I had been building up ways of dealing with autism on my own and simply wanted to come to her and check they were alright. She pointed me to a lot of resources, some helpful, some meaningless, and told me the answer to my question: they were.
Do I wish I had been diagnosed earlier? It’s hard to tell. I can see how it could have contributed to the unhelpful cordoning myself off into a special category which I did as a child. However, I can also see lots of places where knowing about it would have been helpful in understanding why I reacted to something in the way that I did. Further, it would have been helpful if my teachers had known, and not expected this or that from me. Maybe it would have made the transition faster into “I’m different, and that’s just a part of the world.”