Diagnosing

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.”

The Cliff Edge of Not Talking

‘I wouldn’t have guessed that you had autism,’ said my friend. ‘Do you find that it affects your life?’

Here are two ways in which it affects my life, selected on the basis that I feel like talking about them. They are absolutely classic examples of symptoms which many people on the spectrum will have: 1) non-verbal episodes; 2) taking things literally.

See also my illustrations of what sensory overload is like, here. https://wordpress.com/block-editor/post/coherentthinker.home.blog/78

1) The Cliff Edge of Not Talking

It has been a noisy day. I want to stay here for the Bible talk, but I know I won’t manage it down there surrounded by other people. Someone spots me heading up the to the balcony and asks me a question. I can’t do anything but stare at him. He is surprised and asks me something else. Now I’ve got two questions bouncing around in my head but no answers, and no way to excuse myself and get out of this situation.

I am on the Cliff Edge of Not Talking. I don’t know if you’ve ever had the experience of peering down from a cliff edge or a tall building when the thought occurs to you: “I could jump off.” But everything inside you recoils at the idea. There’s something inside you holding you back so that you would never, ever do it. That’s the only way I’ve been able to explain what it’s like, trying to talk in a non-verbal episode. It’s like trying to jump off a cliff.

Some friends have got used to this and started asking if I want to write things down if they notice me struggling. I feel a certain element of ‘how dare I’. I have words in my head; why can’t I say them? Doesn’t this feel like a stop-gap measure which you would suggest to a child until it learns to communicate properly? What kind of person has a note saved on her phone which says ‘Is it OK if I sit up here?’ just in case the balcony situation happens again?

I’m not trying to be rude. Give me a minute.

2) ‘Everyone just lies all the time’

Take a look at the following lies:

  • ‘How are you getting home? I’ll give you a ride in my bike basket.’ This means that they’re sorry they can’t help. Falsehood for humour. Don’t try to figure out how it would work.
  • ‘I’m heading off now.’ This means that they’ll stay an extra twenty minutes chatting while slowly making moves towards the door, leaving you constantly in suspense as to when they’re actually going to leave.
  • ‘Oh come on, you ruined it!’ This is a comedic overreaction. Don’t worry, they’re not actually annoyed at you.
  • ‘Best wishes.’ This is something people put at the end of an email, even if they are actually annoyed at you and not wishing you the best. It means nothing at all.
  • ‘I don’t mind.’ Wow, careful! This could mean literally anything.

Other people can distinguish lots of different kinds of falsehood. I only come with two default settings, ‘true’ and ‘not true’. If I’ve been squinting at you silently for a while, I’m probably trying to weigh up the evidence as to whether your sarcastic comment is ‘so outrageous it can’t be true’ or just the normal kind of outrageous.

I’m told that other people can tell sarcasm from sincerity by “tone of voice” and “facial expression”, but I’m starting to think that’s just a myth. Do you all actually understand each other or are you just guessing? The expression and tone for both seem exactly the same to me.

My options are:

  1. react to everything as though it’s true and seem gullible;
  2. over-correct and react really cynically to everything;
  3. ask you to explain, and we can stare at each other awkwardly for a few seconds.

Give me a minute. I’m trying.

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‘This changes everything’: some steps on a journey out of atheism

In my first year of university, I was catapulted from an apathetic world in which I didn’t really mind whether God existed or not, into an increasingly urgent quest to find out whether he did. I wanted answers to the big questions of life, and Christianity offered some. I intended to pick them up, glance over them, and then discard them again as inferior to my own rational, coherent worldview. On the way, however, came a series of blows which shook my faith in atheism. Looking back, these are the factors I would pick out as removing barriers between me and God.

1. “What do you think about all this?”

The first Christian I met at university asked me this all the time. Not just initially, but after every talk, passage or book which might have altered my opinion. Answering this question obliged me to think about everything I’d taken in and what difference it made, not just let it sit. The question of faith became the main thing my mind defaulted to when it was at rest. I thought about it while washing my hair, while cooking, and while waiting to fall asleep. This was quite annoying. It was also quite important.

2. A rational thinker baptised

One of the most important things for my early investigation of faith, I think, is that there was another atheist investigating it with me. She was one of the most cynical and ruthlessly critical thinkers I knew. We would (and still do) sit on someone’s bedroom floor and discuss all the big questions of life and the inadequacies of our approaches to them. Of course, we were also critical of any flaw we thought we found in the Christian stuff we heard.

Suddenly, seemingly out of thin air, I found out that she was getting baptised. Outrageous. This was a real blow to the security of my atheism. If she could decide that the Christian faith was rational, it could happen to anyone. The testimony she gave at her baptism was a particularly pertinent one for me, because it drove this idea home. The way to ‘intellectual dignity’, as she put it, didn’t have to lie in denying God.

3. “This changes everything”

I’m not sure what I was expecting church to be like. I had never gone as a child – maybe to Sunday school once or twice when I was staying with my grandmother. Whatever I was expecting, the reality surprised me. I started going to church with a couple of people from my college, seeing it as a step in my research about what Christianity was like nowadays rather than the impression I had picked up from my history course.1 I would stand up and sit down when prompted, not participating – I didn’t know any of the songs or what was supposed to be happening.

The structure of church gave me space, sometimes, to sit and reflect on what my life was like. This was a jarring and quite uncomfortable experience. But I kept going back.

Rather than singing, I would scrutinise the words of the songs and hymns to see what information they could yield about what Christians believe. I was pulled up short by the words in a song by Lou Fellingham: ‘He is alive, Jesus is alive; this changes everything.’ By this point in my investigation, I knew enough to know that the logic was sound. If Jesus was alive, then that certainly would change everything. I had heard a talk quite early on about the historical evidence for the events at the cross, and found it quite thorough and convincing. It was hard to come up with an explanation which would cover all the facts, apart from that Jesus really rose from the dead.2 However, I filed this puzzle away for later. Accepting it would mean I had to change my worldview from one in which miracles don’t happen because they can’t, to one in which they can and they have. And that would mean having to face the possibility that all the rest of it was true as well.

‘Do you find it convincing?’ my Christian friend asked once, referring to the evidence of the cross, as I was putting my bike away.

‘Yes,’ I said, ‘but it’s got a lot to be convincing for.’

4. “If you would allow me to push back on that…”

… the pastor said, cautiously and courteously, ‘there’s a logical fallacy there.’

Amazingly, this church allowed space for young people with objections like me to sit and talk through them with the pastor. There was a girl from a Catholic background who wanted to know whether the Bible supported her family’s position; there was a girl from a nominal background who was convinced about the importance of Christ but needed more information to get started; and there was me.

It was helpful to get some answers, and it was helpful to hear sometimes that we just don’t know: the Bible doesn’t always solve our objections but rather invites us to trust God about them. Over time, I began to absorb this way of thinking, trying it on like a pair of glasses. I moved from bringing my objections to challenge Christians with, to trying to adopt a Christian mindset and figure out how I would answer that objection myself if I had faith.

But perhaps the most helpful thing was to realise that I was committing a logical fallacy. I was using reasoning not to face the issue, but to find an excuse to avoid facing it.

If my atheism wasn’t logical, then what was it? Just a way of sticking to beliefs that were comforting to me so that I didn’t have to consider the alternative? That was exactly the accusation that I would have aimed at Christians a few months ago.

In retrospect, I trace this as the moment where I cautiously tipped from resisting God to accepting the possibility of him. It was just a matter – and this was no small matter, but took a long time – of admitting it out loud.

5. “I’m also grateful for my non-Christian friends.”

I kept nearly admitting that I had come to believe God was real. In tiny increments, with one obstacle after another being quietly removed. But I could only hint at it.

A moment that stands out in retrospect is, at a bonfire, hearing someone chat about me in the third person. ‘I’m also grateful for the non-Christian friends I’ve made,’ he said. ‘Like Alison.’

That didn’t sound right.

I didn’t decide there and then, but around that time it became clear that now was the time to step over into the circle marked ‘Christian’. As I wrote in my diary at the time, “I think I have felt like a Christian in every way but the real one for a few weeks or a month now.” This was strange and scary. I knew about the concept of ‘giving your life to Christ’, but I couldn’t get my head around what this might mean in practice. Nor did I want to commit myself to a promise that I didn’t know whether I could keep, because how could I predict whether I was going to keep believing this all my life? However frustrating it sounds, rationality can only get you so far. Faith always has to be the final step.

6. “What’s stopping you?”

The pastor asked me one night what was stopping me from becoming a Christian. I had had a pretty autistic day and felt like there were dozens of different TV channels and radio stations playing in my head at once, making it hard to focus on anything at all.

‘I don’t know how,’ I said.

He told me how.

‘I’d like to do that,’ I said.

We went into an empty corridor and he prayed. He said that he wanted me to try and pray aloud too and would wait until I was able to.

I did, and I think what I said was something like ‘Thank you for waiting for me.’

In my diary afterwards I wrote “It didn’t feel very earth-moving.” It was no great ritual, just those two prayers. But here I am.

Epilogue: “You could just not.”

At that time I was often asked whether I was worried about how my family would react. I wasn’t. It was a decision that had to be made on its own merits, not based on what other people thought. Besides, I had a vague conviction that they wouldn’t be sufficiently uncomfortable with it to try and change my mind.

I was surprised, therefore, when the first thing my mother said (after some joke, I think, about whether I was sure it wasn’t a cult) was ‘If you’re not fully sure, maybe you shouldn’t be a Christian. You don’t have to. You could just not.’

I’m still not fully sure how to respond. It feels as though Christianity simultaneously is and isn’t a choice. It’s up to you, to some extent, whether or not you have faith. But once I had accepted that God was real, the rest came rushing headlong with it. How ridiculous would it be to discover that the universe was created by a being who has spoken to us through his word, and then ignore what he says?

So I began stumbling through my first year as a Christian. The old difficulties are still difficult, and some new ones have come along as well. But looking at things from the position of a Christian rather than an atheist is like looking at them with a new pair of eyes. In a way, things are the same as before. In another way, this changes everything.

I hope this collection of snapshots has shown you how it’s possible to make the journey out of atheism, whether you’re looking at it from my side of the fence or from a lifetime of Christianity where you can’t imagine what life would be like without it. My question for you is: what do you think about it all?

1For this I would recommend Vaughan Roberts’ “God’s Big Picture”, which helped me see the Bible as more than an odd piece of ancient literature.

2For this I would recommend Keller’s “The Reason for God”, which takes the reader through common and, from my point of view, quite serious objections to Christianity.

I’d like to thank the people I have alluded to in this article for the role God played through you. I expect you know who you are.

Church with minor symptoms

Have you ever wondered what it’s like to go to church as a neurodivergent person? Whether you have or not, you can now! I’ve illustrated some minor symptoms here. Sensory overload is the big one, and deserves a whole post of its own.

1. Prosopagnosia

We all know that it’s hard to match people’s names to their faces. As a bonus, the neurodivergent brain doesn’t distinguish between different faces, or it might process all the features separately but not together. If I remember to, I compose a list of facial features to help me match up who’s who. Otherwise, I have no idea who I’m talking to.

2. Sentence comprehension

I don’t know if you’ve ever had the experience where a supervisor says a sentence which is about ten clauses long, and then you zone back in to hear them saying ‘…don’t you agree?’

It’s hard for the neurodivergent brain to follow the sense of a sentence from one clause to another. This is sometimes seen with autistic kids: if you give them a sentence containing several instructions, the kid can’t sort the instructions out from each other and might end up doing nothing.

Luckily, I’ve just been gifted one of those giant ESV study bibles and am excited to get some help decoding Paul’s giant sentences.

3. Non-verbal days

On the other hand, if you had to have a day when you couldn’t form your jagged-edged thoughts into clauses, where would you want that to be? In a place full of people who will be calm and kind about it, and not mind if you read from notes like an actor or bolt while they’re trying to talk to you, and try to help?

Somewhere like a church, perhaps.

Autism is a gift

I love telling people about autism. Normally when I mention something about it, the response is ‘Thank you for sharing that with me.’ Actually, I should be thanking them for giving me the opportunity to tell how it is for me.

A lot of people don’t have a clear idea of what it is. I once told someone I had been diagnosed and her response was ‘I wouldn’t have thought so. Your hand-eye co-ordination is quite good and you don’t lose your balance very much.’ To this day I have no idea what condition she was thinking of.

My lens

Another thing I’m often told is ‘I’m sorry you’re going through a difficult time right now.’ Incorrect. Autism is not a temporary distortion, the way mental health problems like depression are. It’s just the shape my brain is. Or the lens I look at the world through.

Autism is a gift

Autism is partially a gift in the customary way, that is, in that I can see how it helps me.

  • It streamlines my mind into neat boxes, so that I can recall thousands of details and organise the world into categories.
  • It gives me flowing streams of passion for whatever I choose to attach it to. The stereotypical ‘specialist subjects’ would be things like maths and computers, but mine are more about literature, legends, and the Dark Ages. Being able to study my specialist subject at university means that an afternoon of reading my notes feels like an exciting treat.

Autism is also a gift in the ways it doesn’t seem like one.

  • When I write down notes to show to people just in case I won’t be able to talk that day, it’s a gift.
  • When I’m driven crazy by the texture of my own clothes and hair or a high-pitched sound or an unexpected hug in a world designed for people with a higher tolerance than me, that’s a gift.
  • When all I can do is find a quiet corridor to shut myself in and stare at nothing rather than respond to the people who are trying to love me, it’s a gift.
  • When the lady diagnosing me wrote that it was impossible to have a normal conversation with me, that was a gift.

I don’t understand how, and it would seem trite and artificial to try and assign value to the parts of it that I hate. But I know that nothing I’ve been given is to my harm.

The Lord will keep you from all harm—
    he will watch over your life;
the Lord will watch over your coming and going
    both now and forevermore.

Psalm 121.

That sounds a little brittle at face value. It sounds like the Bible is promising that nothing bad will ever happen to you. We all know that’s not true. Everyone, including Christians, face things that are hard to deal with. The Bible itself makes this very clear in other places, including the many cries for help and deliverance in the psalms, and Jesus’ words in the Gospels.

We know that even righteous people have troubles. But none of them will ultimately lead to harm. Each one of them is something you are supposed to have, and will not impede you growing into the person you are meant to be.

It’s taken me two years since my diagnosis to be able to thank God for this gift, but now I can. And in the end when everything is brought back into balance, I don’t know whether it will be gone. Because it isn’t a distortion, only a different kind of lens.

Here, too, is my prayer.

It was difficult to physically be in the church the day of my baptism. For the whole service before and after the time I was standing at the front, I went and shut myself in the church office because everything seemed suddenly too loud.

When I get like that, it’s difficult to interact with language at all, so I wrote out something familiar in full before I could work my way back up to putting words into syntactic units.

Here is my prayer. (Transcript below.)

Our father in heaven hallowed be your name your kingdom come your will be done on earth as in heaven. Give us today our daily bread and forgive us our sins as we forgive those who sin against us. Lead us not into temptation but deliver us from evil for yours is the kingdom the power and the glory now and forever.

a mangled version of the Lord’s Prayer

Thank you that you brought me from death to life like to air from underwater

and that I could show that today. thank you for my family and sisters from other churches [who] could come

Thank you for giving me the cross of autism to bear so that my head fills with radio static and my body turns to stone

And thank you for filling me with happiness and calm the minute before the testimony so that I could do it just like I always knew you would

Thank you that it touched people

Please may this be the year I forgive my mother

You did the work so that I could be allowed to do this by your sacrifice. Yours is the kingdom the power and the glory now and forever amen