Autism – a Diagnostic Quest (Stage 2): Gatekeepers

So, last week I began to write about my experiences of Asperger diagnosis (it’s here if you missed it.)

I wrote about how painful and frightening the world is if you don’t know who you are – how you can be caught between “normal” and “freak” and not feel like there’s any way out, until the possibility of this word comes into your life that suddenly makes sense of it all. How suddenly “autism” can switch a light on and offer possibilities for understanding and validation that you didn’t know were there before.

I wrote about the process of beginning to research the word “autism”, and how much I needed it – needed to know.

But it couldn’t stop there. For some people that is enough – they can read and study and decide that they are enough of a “fit”to be able to assume that identity for themselves, and they are quite satisfied with self-diagnosis. For me that wasn’t an option though, for two reasons – the first was quite pragmatic in that I was struggling with academic work and needed a formal diagnosis in order to access disability support. But fundamentally, I needed external confirmation. This was so, so important that it couldn’t rest on all the contradictions and subjectivities that I’d found in the literature that I’d begun to read about autism – the bits that fitted me so well they could have been written about me, but then the bits that were absolutely the very opposite of everything that I am.

So,  I began to try to access diagnosis. As was routine at the time (though I think other options are beginning to be available now), this began with a visit to the G.P for referral to a clinical psychologist.

At the time, it felt like autism was a “thing” that was fixed and measurable and could be detected by a clinician as if they were doing blood tests or x-rays. I wanted it to be that simple. I really thought they had that power – so probably, in our interactions, I gave them that power. And that’s why I ended up feeling so let down.

It took two G.P. visits to get the referral, and they were both unremittingly awful.

I don’t remember much of the first part of the first appointment – I think at that point, I was still thinking that this was going to be easy – that the G.P. would know about autism, would have read all of the stuff I had, and a whole lot more. I think I explained what I wanted, and a little of why, but to be honest, that bit is all quite hazy.

The bit that stands out – that still burns and makes me feel prickly – is when he told me that he wasn’t going to refer me, as it was highly unlikely that someone without a learning disability, someone at university, would have Asperger syndrome.

“I think they are usually learning disabled.”

The surgery was a mile away from home, and I cried for the entire walk back. I usually try really hard not to show emotion in public – especially crying, as this generally leads to questions that are hard to answer. But it was so incredibly painful to be so sure that the G.P. was wrong. I’d found many contradictions about autism, but the one thing that seemed fairly consistent was that it was entirely possible (and indeed very common) for people with Asperger syndrome to be of average or above average intelligence (whatever that means). I KNEW this – I had the knowledge and the G.P. didn’t, but I was a teenage student and he was a doctor and I was utterly powerless.

It’s probably another indication of how important this was, that I carried on. It might have been easier to put the idea back in its box and carry on trying to fit in with the “you’re normal, you’ll grow out of it” narrative. But I couldn’t stand failing at that anymore, so I carried on.

This time, I went to the university disability support service and spoke to a support worker. They were really helpful, and this meant that the next time around, I was able to access private diagnostic assessment as it was paid for by the university (Access to Learning Fund – this has been ‘replaced’ now, so I don’t know if I’d be eligible today) but still required a G.P. referral. So back to the doctor –

I remember a lot of this appointment really clearly. I was waiting in the waiting room for twenty two minutes after my scheduled appointment time, before my name was called. I’m really not great at waiting if I don’t know the exact reason for the delay – I get really fidgety (not sure if it’s panic or anger, I often can’t really tell the difference). So when I got to see the doctor, I already felt sick and like my pulse was racing – then two things happened that made things worse, and these might seem odd to those who think that autism means not being able to understand social rules in any pure sense:

Firstly, the doctor didn’t give any account for the delay – no reason and no apology. And that’s hard, because lateness is not what’s supposed to happen, and it should be accounted for.

Secondly, he didn’t make eye contact when I walked in because he was reading notes and didn’t look up. Now, I’m actually fairly “typically autistic” in finding eye contact intense, painful and violating (as if someone’s trying to touch you in a ‘private’ place), and I have all the usual strategies for looking at foreheads, interesting jewellery, noses – anything to make it look like I’m ‘doing’ eye contact while I’m not. But the thing is, when you’ve been told so many times, for as long as you’ve been able to understand, to “look at me when I’m talking to you”, it becomes an important rule – you EXPECT eye contact, even though you hate it, so when it doesn’t happen, it spoils the script and you don’t know what’s supposed to come next.

So, I was feeling quite confused and stuck when he asked “How are you today?” This felt strange because it wasn’t the type of question I was expecting – something more functional would have helped, I think – “What is the issue?”. “What can I do for you today?” etc – but “How are you?” is one of those types of question that people ask for social reasons and it doesn’t usually demand an accurate answer, so I couldn’t work out conversationally how to get from that to what I needed from him. This led to what I generally think of as a “rabbit in the headlight” moment – I couldn’t work out what to say, I felt hot, sick and my pulse was racing. I didn’t have the words, so I didn’t speak. And I hate those moments, because conversation has its own rhythm, and if you miss your turn you have to account for it, which means finding more words, when words are precisely the thing you are lacking – panic leads to lack of words which leads to more panic.

A thing worth mentioning is that people had told me before the appointment (having heard about the first disaster), that it might be a good idea to make notes to take with me, to help me get my point across. And I had notes. The trouble was, that I had thirteen pages of notes from all my careful research – so much distilled information, so many hours of work, so much of my heart in it,  but absolutely no idea of what was important and what wasn’t. And thirteen pages of notes are in some ways less useful than no notes in the context of a five minute G.P. consultation. What I would have needed was someone to make notes for me from all of the masses of stuff in my head – something I can do for others, funnily enough, but not for myself.

Anyway, this time, I already had funding for the assessment through the university, so the G.P. agreed to make the referral (felt like he was ‘rubber stamping’ it). To be honest, I’m sure there was more interaction, but I can’t remember it all. And I think it’s significant of itself, that what I’ve written is what has stayed with me – that’s the stuff that hurt so much it left a lasting impression.

An ‘Autism’ thing?

One thing that comes to mind, having written this, is that it’d be quite easy to frame many of my issues with interaction in terms of the social-communication ‘deficits’ that are said to be inherent in autism – rigidity, problems in planning and problem solving, literal receptive processing… I could easily adopt that script to give my experience the legitimacy of a clinical diagnosis, but I wonder how other people feel in doctor-patient interaction, and whether/how the need of the patient to access what is within the doctor’s gift, and the power imbalances in clinical relationships affect neurotypical people too.

 

 

 

 

 

 

 

 

 

4 thoughts on “Autism – a Diagnostic Quest (Stage 2): Gatekeepers

  1. Mostly, I’m sorry that you had a bad, unhelpful, experience, especially as it was at the beginning of your journey. Those first steps are so important.

    You mention at the end about whether such an experience would have affected a neurotypical person in quite the same way. I hope it’s OK if I say that I believe it certainly could. My caution in saying this is based in not wanting to be dismissive of what you’re describing, and not wanting to deny that autism could make situations like this especially tough.

    I don’t know whether my experience is relevant because I work with people whose diagnoses are generally of mental illness and/or personality disorder, but after years of talking to many, many people (and also from personal experience) I have learned that GPs vary ENORMOUSLY in the extent to which they ‘get’ mental health issues, and I imagine that the same variation probably extends to autism, too. Some GPs are brilliant and some are awful in this area. I always encourage patients to find the one at their practice who makes them feel heard and understood. Also – and this is more from personal experience – the same GP can vary between occasions in how attentive they are.

    But certainly in all areas of healthcare, people have bad experiences of taking their very personal, very important, concerns to a GP who doesn’t listen and is dismissive. I’m sure the reasons for such behaviour vary: maybe the GP is having a bad day for some personal reason, maybe they don’t know much about the issue in question and are feeling anxious themselves, maybe they’re stressed and burned out, maybe the six patients before this one came with genuinely ridiculous complaints, or maybe the GP is an idiot with no people skills. I’m ashamed to confess that my own weakest practice has probably been when I’ve felt powerless to help and over-stressed.

    But of course a way needs to be found to make it manageable to take something like “I believe I have autism and I’d like this to be followed up” to a GP, with a good outcome that feels safe.

    I hope that things will improve. There is more focus these days on patients’ views of their encounters with health professionals, so hopefully the days of GPs being regarded as omniscient near-deities who mustn’t be troubled unnecessarily are on their way out.

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    • Thanks so much for such a thoughtful comment!
      I think one thing I’ve been questioning is exactly HOW things can be improved in terms of interactions with GPs. I thought for a long time that the answer was for doctors to KNOW MORE ABOUT AUTISM, so that they’d be better equipped to decode these interactions. I did loads of campaigning, training and advocacy around this as a direct response to my experiences. But it seems to me like there are other fundamental challenges that aren’t really addressed by the “know more about autism” formula – attitudes of power (I know best as I’m the doctor) being possibly the most obvious. Though I’d guess that those expressions of “power” serve important functions for GPs themselves ( to make bearable the responsibility and accountability of their role). I’ve also heard professionals extend the arguments that a GP cannot know everything about everything – they may encounter only a tiny handful of autistic people in an entire practice career and therefore we can’t be a priority because we’re a minority. Apart from how that argument doesn’t really help affected individuals, it also doesn’t sit well with positions of power and accountability. That’s why I’d like it if the initiatives that are going on currently around autism and primary care would interrogate the position of the practitioner, and not focus exclusively on education “about autism”. And maybe began to explore how professionals can acknowledge their own powerlessness without experiencing this as an attack on their professionalism and skills – quite a lot more systemic and structural focus than the individualist approach of educating “about autism”. Hmmmm… 😉

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  2. ALSO (sorry, forgot to say in the previous comment), power imbalances in relationships with professionals are potent things. I’m not sure how much GPs are encouraged to reflect on them. In our profession there’s a LOT of focus on the subject, and rightly so. It is difficult to challenge the GP, the tendency is to be submissive and compliant. (I say this as someone who was once sexually assaulted by a GP.)

    Anyway, forgive rambling!

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