How to Recognize When Patients are Autistic, because 1 in 5 are! Advice from a UK Psychiatrist.
This is a very interesting/insightful thread I copied from Twitter before the storm, in the 'how does this total stranger know so much about my life' category. Some of our conversation at the meeting Saturday reminded me of it so I thought I would share. Written by Dr Sam Porter @PerinatalBirder His Twitter profile describes him as "#Neurodivergent Consultant Perinatal Psychiatrist" and he describes this thread "Here’s a thread I’ve written for psychiatrists to help them pick up recognise when their patients are autistic, because 1 in 5 are!"
He's from the UK so some of the acronyms are unfamiliar (I think OPD is out patient department) but otherwise what he writes describes my experience seeing doctors and psychiatrists for years except for the part where the patient ultimately gets an accurate diagnosis. Certainly when I think back to what I said and didn't say to my doctor and a couple different psychiatrists I don't understand why I wasn't properly diagnosed. Instead the doctors seemed to get frustrated with me for not getting better after taking antidepressants for 10+ years. But I hadn't told them I'm autistic because I didn't know at the time.
So its interesting that he's talking about diagnosing adults who don't already know/suspect they're autistic. As hard as it is to get a diagnosis as an adult in Canada, I've never heard of an adult getting diagnosed as autistic who hadn't first gone to the doctor to say 'I think I'm autistic'. I don't know if there are other conditions like that, where its up to the patient to tell the doctor what the issue is, but it doesn't seem right to me.
There are many great observations in this thread some of which I've highlighted. I fixed some sentences where the thread reader app put in a paragraph break but otherwise didn't edit it. Here is the entire thread:
"A recent study showed 1/5 of people referred to #psychiatry OPDs are #actuallyautistic. If your clinical experience is that this is much lower, you’re probably missing #autism in your patients. This 🧵 will explain why that’s a problem, why it happens, and how to stop 1/35
The first question some people have is whether or not it even matters, a dermatologist doesn’t need to know if somebody is autistic or not to treat their psoriasis, so do you need to know if they’re autistic or not to treat their depression? Well, you do. For a few reasons 2/
First, there is a differential for depression in autistic people that is clinically very difficult to distinguish from depression but does not respond to antidepressants or therapy - burnout. If you don’t know your patient is autistic, you won’t consider the differential 3/
And whilst NTs get burnt out too, autistics and NTs get burnt out by different things, and autistics know the things that burn them out don’t burn most people out, and can often be self conscious about them, and don’t share them, because they’re used to them being trivialised 4/
And “objectively” to the NT mind there is nothing going on that could be burning them out, so we assume they are depressed. I meet lots of autistics on antidepressants that they have been on for years, that haven’t really helped, but are hell to stop - started whilst burnout usually in an unhappy/abusive relationship/job, with recovery following the end of that situation. 5/
They may recognise this link, try to stop the meds for the first time, mistake withdrawal for relapse, and think “oh it was depression after all”. And even when it is depression it still helps to know that they’re autistic for treatment. 6/
Medication should be used carefully - start low, go slow is life-long advice for autistics - those patients who say they get unbearable side effects at very low doses (and you sometimes doubt) are often autistic 7/
Further, it should inform their overall care. Avoid last minute appointments as far as possible. Ask if they are comfortable with group work/video/home visits & only offer them if they are. Get the same staff to see them. Check each other’s understanding of plans proactively 8/
So, now we know why we need to pick up that somebody is autistic, we need to know how to do it, and to do that we need to know why we aren’t very good at it. Mostly it’s that we don’t even think of it. That one’s easy. 20% of new patients you see are autistic. Think about it with every patient. 9/
You can only pick it up if you’re thinking about it. But even when we are thinking about it, we can miss it. I’ve had a few patients that I’ve had for months, even years, & I’ve suddenly realised I’ve missed the wood for the trees. And I think about it 10/
One reason for missing it is bias. Autistic women/PoC are less likely to be recognised as such, creating an impression that people from these backgrounds are less likely to be autistic, & there’s a vicious circle. So set a high bar for convincing yourself women and POC are NT 11/
But even when we are thinking about autism, and we’re conscious of bias, we can get thrown of the scent by either false reassurance - usually they were seen by CAMHS/SALT/EdPsych and not been picked up - or diagnostic overshadowing - they’ve already got a Dx of EUPD/CPTSD etc 12/
I used to fall into the trap myself. “If they were autistic it would have been picked up when they saw x.” But actually, if somebody you think might be autistic for saw eg SALT for speech delay I think that’s evidence in favour even if they weren’t recognised as autistic then explore why they saw these professionals. 13/
You’ll probably find lots to support the fact that they are autistic, with the benefit of hindsight. The next trap to avoid is thinking that their personality disorder/mental illness/trauma “explains everything” 14/
Autistics regularly get misdiagnosed with things like EUPD, but even if it is not a misdiagnosis the patient could still be autistic. Trauma & autism go hand in hand, which is a huge thread tin itself, but if they have a history of trauma it is MORE likely they’re autistic 15/
So continue to think about autism in light of other diagnoses - as your management of them will be guided by it (see above). But even when we are really thinking about autism we still miss that people are autistic because we try to spot it with our eyes instead of our ears 16/
Now, I will admit, I do occasionally walk into a home, or see a patient walk in to a clinic and be a hit by a kind of “autistic gestalt” but far more commonly the thought that a patient might be autistic comes from something they say. And for autism, the history trumps MSE 17/
I’ve had this conversation many times: - Might she be autistic? - No I don’t think so - Have you asked her about sensory processing issues, special interests, response to change, or taken a developmental history - No - So why don’t you think so? - She doesn’t seem autistic 18/
Most autistics knows they’re different to their fellow members of a species that alien field guides would describe as “aggressive and suspicious of the different” & so most of them learn to do a thing called masking. I one patient told me “eye contact’s easy - 3s off 3s on” 19/
Her previous MSEs noted “good eye contact” which had been used against a previous question of autism, but there’s nothing “good” about having to constantly be counting to 3 whilst you’re trying to have a conversation. The CAT-Q tool can be helpful for uncovering masking 20/
“Function” can also mislead. We see the job & marriage. We don’t see that they depend on their partner to help them overcome the executive dysfunction that is ratcheted up by the amount of energy they expend on work, how they spend every evening recovering from the day 21/
So, now we’re ready to recognise our autistic patients we need to know how to. Given the 20% prevalence in psychiatric new referrals, an argument for screening everybody could be made, but the AQ50 has a sensitivity of .8, meaning a -ve result shouldn’t stop us still thinking 22/
So - how to find the 20%? Begin at the referral >2/3 of: OCD, EUPD, (C)PTSD, GAD, IBS, ME, epilepsy, hEDS, multiple allergies/intolerances, atopy, Fibromyalgia, depression, DV, schizophrenia, severe PMS, social anxiety,eating disorder, ADHD, workplace bullying, alcoholism etc should all prompt exploration of neurotype. 23/
When I listen to the presenting complaint I’m aware to phrases like “I’m fine when I’m alone” “I always feel overwhelmed” “I’m always exhausted” “I can’t be myself” “I haven’t been able to socialise since i stopped drinking” 24/
I follow these up & explore them. Some autistics struggle to articulate their feelings. I will often say something like “patients who have also described xyz sometimes tell me…” & then I will tell them how autistics describe burnout, masking, sensory processing issues etc 25/
The best way to learn about autism is to listen to/read lots of autistics talking about it - there’s lots out there, this article is a good start bbc.co.uk/news/resources…. Many autistics, hearing these stories, say things like “I thought I was the only person like that” 26/ It all made sense when we found out we were autistic https://www.bbc.co.uk/news/resources/idt-sh/women_late_diagnosis_autism
I’ll then ask if I can ask some questions that may seem unrelated, but that will eventually have a point. I ask about things like sensory processing, special interests, feelings about change, I tell anecdotes about autistic friends, patients and family and ask if they relate 27/
Those that can are starting to get curious, and so I ask if we can do a questionnaire. I then do the AQ50 +/- the CAT-Q with them, using it explore aspects of autism as they come up - “you’re good at small talk, but you don’t like it?” “tell me more about noticing patterns” 28/
By this time, the patients usually either say “do you think I’m autistic because I have wondered before” or “how do all these things connect”. The first group are easy, but the second group, who don’t necessarily know much about autism, can be resistant when it is suggested 29/
This is where having used real life people helps. I can tell the patient “all the people I’ve told you about, many of whose experiences you relate to have something in common so when I say what it is I want you to try to ignore everything you may have heard about it before” 30/
Most patients are perplexed at first, some are even offended, (I remind them of the many friends and family members I had referred to, and told them that if I think they are autistic they should take it as a compliment, which usually gets over). But most want to discuss it 31/
3 have completely shut it down and we left it, but 8 months later 1 brought it up & I’ve just diagnosed her. The majority have agreed to be sent the some articles, read about it, & explore it more if they wanted to. So far every patient has wanted an assessment afterwards 32/
And if, after spending time reading about it, the patient really feels that they are autistic, & you don’t feel able to formally diagnose them, not because you doubt the diagnosis but because you’re “not a specialist”, don’t wait years for the assessment to make adjustments 33/
If a patient tells you that they have read about it and they are convinced they are autistic then proceed with the assumption that they are. There are far more autistic people being jammed like square pegs into round holes than there are people pretending to be autistic 34/
Thanks for making it this far. The main take homes are - always consider neurodivergence, look for it with your ears not your eyes and learn about autism by listening to autistics. 35/35"
So that's Dr. Porter's entire Twitter thread.
Another article I think relates is this: Autism diagnosis in adulthood tied to increased burden of psychiatric conditions It starts off "People diagnosed with autism in adulthood are nearly three times as likely as their childhood-diagnosed counterparts to report having psychiatric conditions" I think it relates because Dr Porter is not saying 1 in 5 people are autistic; he's saying 1 in 5 adults who seek psychiatric care are autistic. And this article claims late diagnosed autistic people report co-occurring mood, anxiety, personality or eating disorders at a much higher rate than those identified as autistic in childhood. All the more reason doctors should be diagnosing autistic people as soon as possible instead of acting like it doesn't matter...like we don't matter.
If you have any comments and are comfortable sharing please do so below. I'd love to hear from you.