Cara sits in the chair to my right. She looks everywhere but at me; at the floor, at my desk, at her hands. I read through the notes from my colleague’s consultation last month, and the letters from various agencies. Now twenty-two, Cara crashed out of university in what is described as a psychotic episode four years ago. Called to the lecturer’s office to discuss an unsatisfactory assignment, she refused to speak and ran from the room. Several staff attempted to restrain her, resulting in frantic head-banging until she was removed by ambulance to the local psychiatric department.
The years since then have been a pattern of admissions after similar episodes. Staff on the ward note that once she recovers she is calm and appropriate, but very scared of some of the more labile patients. She has moved from hostel to hostel, and has no friends, or support system, as one psychiatrist notes in an irritated scribble at the bottom of a discharge summary.
Cara has attracted a list of diagnoses. Her chaotic, abusive family have abandoned her, leaving her with PTSD. She is also, apparently, bipolar, schizophrenic, and has a borderline personality disorder.
She has never smoked, never taken drugs, and rarely drinks alcohol. She is on a large four times daily dose of antipsychotic. As I read and ask questions, her caseworker does nearly all the talking, and I wonder if Cara allows this because she has learned that no one ever listens to what she says.
As the caseworker is speaking, I watch Cara. She bounces her heel on the floor and taps her fingers repetitively on her thigh. She makes eye contact for a second, and then seems to panic and looks away. Someone coughs loudly in the corridor outside and she jumps—an exaggerated startle reflex.
I talk to her, but she won’t reply. The caseworker tries to answer, and I motion to her to stop.
Several things I know. Not speaking does not mean not listening. Not speaking does not mean not communicating. Not speaking is not an invitation to dismiss someone, to make decisions on their behalf.
Something else I now know, too. But that can wait.
I lay out a basic plan. I will see her at least fortnightly, and probably more often. If she needs an advocate when the mental health team are making decisions about her, I will be that advocate if she wants me to be. Everything I write, I will provide copies for her if she wishes. And most importantly, I don’t believe she has a personality disorder, or is schizophrenic, and she probably isn’t bipolar either.
Oh, so arrogant, dismissing the psychiatric department’s opinions in a single consultation.
The next week things are much the same. We do an ECG, because of the antipsychotic medication. Cara is weighed, because I don’t think drug-induced weight gain will help her crushingly low self-esteem. And through all this, she barely speaks, and looks away from me.
Four weeks later and we are still in the same place. I consider pulling out; should I let someone with more experience take over? But experience and understanding are two different things, and I know which is more important here. Instead I concentrate on reiterating my support, and I do manage to get the answer to two questions: Cara dissociates when stressed, and she dislikes being touched. Both these have been attributed to her childhood, but I wonder how she felt, that day at university, being ‘restrained’ by staff.
Our seventh meeting, and Cara has stopped the antipsychotic herself. She isn’t seeing the mental health team because they insist she has to call and make her own appointments. Cara is terrified of talking to people on the phone, but I’m the first person to understand this. And apart from a letter demanding the ECG, I have had no communication from the team. I agree that stopping the medication was the right thing to do.
Cara smiles once or twice.
Still no eye contact, but that isn’t a problem. She will answer an occasional question without prompting, and I sense a breakthrough. We talk about therapy, about how her confusion and fear and helplessness are normal feelings, after her experiences.
Cara starts psychotherapy. She comes to see me every other week, and sometimes we talk about feelings, and sometimes it’s just straightforward discussions of sleep, exercise, eating well.
On the tenth meeting I decide it’s time.
I ask her if she would agree to be assessed for autism.
It’s a big word. It carries a lot of assumptions, most of them wrong. I know she will retreat into silence, but I am ready for that. I talk about the head-banging, the meltdowns, the dissociation. The stimming when she is distressed. The odd things, like her fear of using a phone. About how so many autistic people collide unhappily with psychiatry, how it is so rarely considered as a cause of variant behaviour. That I hope we can get her back to university with special assistance, so nothing like that ever happens again. How understanding makes all of this so much more manageable.
Cara doesn’t disagree. She sits, quietly stimming, and I can see her holding this idea against what she knows of herself, wondering if it explains all those differences she can’t yet put into words. Something within her starting to uncurl, to consider the thought that she isn’t someone with a list of psychiatric diagnoses, that who she is belongs to her, and her alone.
She voices the one objection I knew would come. She has seen dozens of professionals. Why did no one else tell me this?
The question hangs in the air, sharp, glittering, dangerous.
I look down at my hands. Suddenly it’s a struggle to make eye contact. I want to rub my palms across my thighs, the way I do when I’m overloading.
It takes one to know one, I say quietly.
We sit in silence for a while.
The next question, too, is expected. Is this why no one likes me?
How to explain society’s exclusion of anyone whose social skills are impaired? To admit how often I’ve wondered if it would be better to have a visible physical disability instead of autism? As long as you can interact with other people in the way they expect, you are one of the tribe. Cara has never been one of the in-group, never known how to initiate a friendship. No one will mentor her; they will gravitate to the other, ‘normal’ students. Employers will find her weird, and however hard she works she will be singled out for not fitting in.
This is why most people don’t understand you, I counter. But we can try to change that.
There is fear, then, in her face. I know that, too. I feel it every time I leave the house, the knowledge that every conversation will balance on a knife-edge, that I will in turn irritate, confuse and mystify, and have no idea why. Society will not adjust to us, and there are few individuals willing to take the time to understand our difference. I feel closer to a non-verbal autistic child in full meltdown than I do to most ‘normal’ people.
On a sheet of paper I write a few lines. Blog addresses, websites, videos. I push it towards her. This is us.
This is how it starts. One by one, like exhausted swimmers, we pull them to safety. They sit in the boat, confused and scared, afraid to wonder if things might finally get better. And the pilots of the boats signal to one another. I’ve found one more. They’re safe. I’m bringing them home.
Because we are here, now. We are making our own community, our own refuge. Online and face-to-face we are finding each other, reaching out to support, to explain, to advocate. We are abandoning the many labels imposed on us – high functioning, low functioning, Asperger’s – in favour of one: Autistic.
You will listen to us, in the end. You will stop telling us who we are, how we feel, why we are wrong. When you say we have no empathy we will laugh in your faces. We will rescue those you have misdiagnosed, we will break down the doors and bring them out to join us. You will make no decisions about us without us.
We are autistic.
And we are on the march.
