Are you a GP or other Clinician?
Are you desperately short of time and resources?
Worried about how to provide the right care for the 1 in 30 autistic people in your Practice lists?
Firstly, this isn't formal training. For that, you'll have to go through the usual channels. This is a quick primer, to get you up to speed on the latest stuff in a few minutes. I have a fabulous GP, and I work with many more across the country, in various roles. Yours is a difficult job, and not made any easier by the current Covid-19 crisis.
Personal interest: I'm autistic, and a Mum of an autistic adult. I'm a patient. I train a lot of Clinicians on autism, working within teams, and have done for years.
OK, here we go.
References can be found at https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html
It's 1 in 30 of your patients (and colleagues, and staff, and neighbours, and probably friends & wider family...).
It's all ages.
It's all cultures and ethnicities.
It's all IQs.
It's a genuinely different social communication system, not a broken one.
It's a strong need for routine and predictability.
It's a very different way of processing sensory signals, which can mean that incoming sensory stuff is utterly overwhelming. Especially background noise or flickering overhead lighting. Fluorescent lighting is a particular peril for many. This may help. A personal example. The level of exhaustion from being in such a space, for some of us, is overwhelming.
In terms of current healthcare outcomes, it's not good. Yet of course autism isn't a disease. There isn't a clinical reason for poor outcomes.https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/-/media/7079AD79A3874B60A9D2ACF7DC4ADE5E.ashx
may be helpful for some background info and top tips.https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/asd-toolkit.aspx is more useful info, though some of it may need an upgrade on language and very latest research.
Broadly, autistic people are dying way too early. Our suicide rates are breathtaking. We end up with all manner of mental health situations because of relentless bullying, ostracism, defrauding, violence and sundry other horrors.
So...making it possible for us to get a GP's opinion on our health, or a steer towards good autism diagnosis, is vital. We're now into virtual world possibilities, which may make it easier for some. But be aware that many find telephones especially impossible. Be prepared to offer the thing that works for them, instead.
Watch out for myths.
Yes, we can appear to make eye contact.
Yes, we can smile and joke (often when in great pain)
Yes, we can be well dressed and seeming to be socially 'competent'. That's called 'masking' and the strain of disguising our autism is strongly linked to really poor outcomes for too many.
Nearly all of us do not want a 'cure' (whatever that would be). We would mostly like life to be doable, and have access to the same human rights as everyone else.
Most of us have lots of empathy for others.
So, make it OK to be ourselves.
Put up stuff about autism-acceptance.
Refer generally to autistic people as autistic people, but ask the person what their own preference is.
Make it OK to wait somewhere doable, for an appointment that is more or less on time. Otherwise, your patient will likely flee, unable to take the sensory overwhelm any more.
Be gentle and explain what you're about to do.
Be accurate. If you say, "Just wait five minutes" but you actually mean, "...well, maybe more than 20", that's a nightmare for us. Be vague if you can't be specific. "Some time in the next 20 mins or I'll let you know there's a further delay", etc.
Be kind.
Goodness me, we live in a world that is so utterly unkind to us so very very often - that kindness and clarity is vital.
Be aware that our internal 'signalling' is often dodgy, so we may not know how much pain we're in...or where the pain is. But if someone autistic has turned up at your Surgery, something's wrong. It's not something we'd do for fun. Investigate. A member of my family played Rugby for weeks with a broken foot. He had no idea it was broken. It didn't really hurt. Even the Physio was sure it was just a bruise, because it wasn't hurting. It's very deceptive. Another member of my family was complaining of vague discomfort, but their mannerism was strange, so the team though it was a mental health incident. They were dead soon thereafter. It was their heart. None of the signs and symptoms may match what you're expecting. Expect the unexpected.
Use visuals as well as spoken questions. Wait patiently for an answer. It can help to ensure that people have a double length appointment, to allow for extra time. Allow an advocate or family member to explain if the person cannot, or if they would prefer the other person to do so.
Be aware of how many autistic people also may have hypermobility syndromes, ADHD, sleep problems, PTSD, or epilepsy (amongst other possibilities). Many end up with quite a list of mental health condition possibilities, none of which match, because no-one has considered autism. Especially the case for autistic females or those from BAME communities.
Get good training, working with autistic team leaders to ensure it's authentic. Get to know us as people. And remember...1 in 30 GPs is likely to be autistic, so whatever language you're using around 'disorder' and 'deficit' isn't appropriate, no matter what it says in a manual. This is a neurodiversity, and a genuine set of differences. Start from that knowledge, and good things have a much better chance of occurring.
Thank you for reading. And thank you for all you are doing to improve our lives.
