As many women who are, or have suspected that they are, autistic can tell you, there’s a disappointing lack of understanding within the general medical profession. I believe that’s changing (as more autistic people, with more varied presentations of autism, appear in the media) but it’s a very slow process and has undoubtedly been responsible for a whole swathe of under- and mis-diagnoses.
I mention it a lot (because it made a huge impact on me), but my own experience of approaching a GP about the possibility of autism reflects the experiences of so many:
The doctor literally flicked through my list of traits without reading it, then immediately told me that I was not on the spectrum because I appeared fluent, had made eye contact when I went in, and besides, it was something diagnosed in young children when it is spotted by teachers and parents, and it’s usually boys.
Anyone who knows anything about the subject, especially its presentation in women, will know that this is an entirely inadequate response, but sadly it seems to be alarmingly common. Many GP’s understanding of how autism manifests can be considered outdated, and (seemingly weirdly) centred around its presentation in children.
This focus on autism in children seems to be for a few reasons… As autism is only diagnosed when it has a marked and relatively consistent impact on a patient’s day-to-day life, GPs will assume that it must have been picked up on in childhood. A child doesn’t have the same self-regulatory toolkit that adults have, therefore if they were autistic the typical and distinctive patterns of autistic behaviour would have been apparent, and picked up on by parents, teachers, or their doctor at the time…
Obviously there are a few things wrong with that assumption.
For a start, if it were true, there would be no late diagnoses. Every case of autism would have been picked up on in childhood, and that would be that. But there are late diagnoses, which means either those people had a remarkable collection of adults around them who all ignored the (supposedly obvious) signs of autism, or… that sometimes these signs manifest in different ways for different children, and are simply sometimes not picked up on.
There’s also the equally obvious fact that our understanding of autism has evolved enormously over the last century (if you’re interested in the history of autism I must recommend Steve Silberman’s Neurotribes, which is the best I’ve read on it: from potential historical cases right through to current issues). A lot of people have a very narrow view of what autism is: think Rain Man, or someone with marked learning difficulties. And it’s really only in recent years that some people have acknowledged that women can even be autistic, let alone consider it a possibility when faced with trying to make a diagnosis (see my GP, above, for a prime example).
This has led to autistic women being frequently misdiagnosed with all kinds of other conditions, rather than autism: depression and bipolar being among the most frequent, as far as I have gathered from anecdote.
It can also lead to clashes, and a lack of accomodations for autistic people, in the medical setting as a whole. I was reading a fantastic document from the Royal College of General Practitioners entitled Autism Spectrum Disorder in females: Signs to alert clinicians to a diagnosis earlier, and this section stood out to me:
(Ironically I was actually going through making notes, and I laughed out loud when I found myself copying down “May focus overly on written notes and/or research”.)
I found myself thinking “Yes! Surely all GPs should be aware of this?” It not only affects those (hopefully one-off) situations where you walk nervously in with all your accumulated research about autism, hoping for a referral, but in fact all encounters between GPs and patients with autism, no matter whether it’s about a broken arm or a stomach bug, cancer or menopause. Autistic people are very likely to have a different approach to a clinical setting, and will almost certainly not interact with the medical professional in quite the same way as a neurotypical person.
For instance, there seems to be a dislike for “self-diagnosis” when you go to the GP with a problem. Which is understandable! With the ubiquity of the internet it’s very easy to do a quick google of any symptom, perhaps fill in a dodgy quiz, and end up convinced you have cancer.
But, when autistic people self-diagnose, it’s often different matter. Something suggested as a possibility to a GP is more likely to be based on hours/days/weeks/etc of research, digging in to peer-reviewed papers and wide-ranging data gathering.
Of course, that’s not always true, but I do think people on the spectrum are perhaps less likely to accept conclusions based on insufficient data or obviously flawed logic. Almost everything my GP has ever suggested or prescribed, I have gone away and heavily researched. And if I think they may have missed something, I will point it out, and sometimes ask them to explain their assumptions. Is this not usual? My GP would always get quite haughty when I did this, and start spewing out as many obscure multisyllabic medical terms as he could, faster than I could hope to record them, just to make, it seemed, a point.
I also recognise myself in the line “May appear articulate overall, but find it hard to explain her situation clearly, or answer questions, locate and describe feelings and symptoms“. It’d be interesting to explore this a little more, or work out why this seems to be the case often enough for it to be included in the document.
Personally, I think it is partly because of my though-speech delay, and my need to try and give accurate information. In much the same way that the everyday query “How are you?” prompts a quick self-evaluation before answering (and therefore an unexpected delay, from the questioner’s perspective), when I’m asked about a symptom or experience, I have to do an evaluation in order to answer. Even if I have gone in with a list/diary of symptoms, the GP will often ask a question in such a way that it doesn’t quite tally with the pre-prepared data, which means a re-evaluation before I can answer. Even the hesitation is usually noted by the doctor, and taken to signify something that is not the case: “She can’t even immediately point to the problem, it can’t be that bad”, or, “She’s not sure how many days this week she experienced this symptom? Can’t have made much of an impression”.
Some things are hard to quantify or describe at all, especially as I have memory problems. If I’m not experiencing the pain at that moment it becomes hard to describe accurately. In the past I’ve literally drawn on my body to make sure I can convey locations accurately in case the pain has faded by the time I get to my appointment.
Memory problems also mean that I need to take notes in with me to make sure I cover everything, and make notes during the appointment to avoid forgetting. I can hold a few things in my short term memory, but not many. I need to translate what I’m told into an understanding rather than a list of statements, but if I’m given information too quickly I’ll start losing the first bits before I’ve formed that understanding. It feels like suddenly losing the thread of the conversation, or, having been picking up each statement like a trail of balls, suddenly dropping a few and losing your grip on the rest, sending them rolling irretrievably down a nearby drain. Ok, that second analogy was a bit tortured, but that’s how it feels.
Anyway, I am planning to print out that document from the RCGP on signs of autism in women, and taking it along to my first appointment at my new surgery (provided registration is successful). I was booted out of my old surgery recently as I’ve moved a mile or two, which means I won’t get to confront my difficult GP about autism again. I’m tempted to post a copy to him.