Mary Doherty 🏳️🌈
@AutisticDoctor
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Autistic Anaesthetist, Founder @DoctorsAutistic , Clinical Associate Prof @UCDMedicine , Hon Clin Research Fellow @BSMSMedSchool #NeurodiversityInMedicine
Ireland
Joined September 2018
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Updating CV for potential new role & realising the first time I ever said “I am autistic” to a group of medical professionals was April 2019.
How many hundreds, if not thousands, since then?
#NeurodiversityInMedicine
3 yrs from taboo to hot topic
#AutismAcceptanceMonth
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Increasing I am of the opinion that many autism researchers want to define autism as only those who can’t communicate and therefore can’t contradict them.
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It’s important to remember that the current diagnostic criteria for autism describe distressed autistic people, yet it’s perfectly possible to be autistic & thrive.
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Let’s normalise being
#autistic
in medicine, in academia, and particularly in autism research.
Why do so many feel a need to conceal a diagnosis?
Why do senior colleagues in particular feel unable to disclose?
So many tell me they are autistic, but not openly so
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Another well received talk to a group of doctors where I’m once again reminded that the most widespread association with autism is “lack of empathy” - and the surprise on hearing it’s a myth
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Why on earth do professional bodies develop guidelines on autism without consulting their OWN members WHO ARE OPENLY AUTISTIC ???
Do they not realise how lucky they are to have members who are safe to disclose?
Then they’re surprised when their guidelines are slammed 🤦♀️🤦♀️🤦♀️
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I’m absolutely furious. An
#ABA
organisation has taken my image, superimposed their own logo & graphics, made up details of my story to peddle their “treatment without even asking for consent.
I am
#ActuallyAutistic
I do NOT support
#ABA
I do NOT consent.
How dare they??
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Neurodiversity is an incredibly useful concept, but it starts to lose its utility when we attempt to define the boundaries of neurodivergence.
Arguments about who is included or excluded are unhelpful, particularly as the field is still emerging.
A 🧵
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New paper alert 📣
Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings
With
@Autistic_Doc
&
@SueMcCowan1
Graphics by
@LittlePuddins
Open access with
@bjhospmed
funded by
@DoctorsAutistic
leads team
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I wish I had known years ago *and* had been raised to be confidently autistic
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“Autistic women are the biggest cause of autistic babies worldwide”
Dr Sam Porter
@PerinatalBirder
Consultant perinatal psychiatrist
“That’s where autistic people come from - autistic people having sex”
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While autism is associated with mental ill health for lots of us, autism is not a mental illness.
We don’t stop being autistic when we are well.
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Possibly one of most important papers ever on
#autism
& mental health
~1 in 5 presenting to psych clinic may be autistic but unrecognised
@conor_davidson
Prevalence of Autism Spectrum Disorders in Adult Outpatient Psychiatry | SpringerLink
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Watching an autistic doctor friend spend days trying to negotiate an inaccessible healthcare system with a potentially serious condition.
If WE can’t get appropriate care despite working in and knowing the system, how much harder is it for non medical autistic patients???
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In tears (again) after a couple of hours of research meetings trying to communicate an
#autistic
community perspective. Do non autistic colleagues have any idea what this costs us??
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“The myth that autistic people do not have empathy is widespread. It’s not true, of course, but it means that lots of autistic people – who know they are empathic – don’t even consider the possibility that they could be autistic.”
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I’m a doctor and autistic. This is why I kept my diagnosis secret
Interview by
@jessiehewitson
in the Times Magazine tomorrow
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“Autistic academics are increasingly involved in
#autism
research, but most… undertaken by non-autistic academics. All members of this project team are autistic. With researchers & survey respondents all being autistic, this is a rare example of a fully
#autistic
project”👇🏻
🗞️NEW PAPER🗞️
Barriers to healthcare & a ‘triple empathy problem’ may lead to adverse outcomes for
#ActuallyAutistic
adults
“It was life threatening and nearly killed me because I was too ill & too disabled to access doctors”
Read free:
@BSMSMedSchool
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How to overstimulate & antagonise an autistic adult.
I would *hate* to be touched like that, never mind the slimy crafts or multiple voices. He said no but they persisted.
This is why autistic professionals are needed across all sectors where autistic people are cared for 👇👇
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Waiting for a phone medical appt. Anxiety high all am even though it’s expected.
9 mins late, no call yet. Now I’ll get distracted & it’ll ring unexpectedly - inducing multiple times the level of anxiety!!
Non autistic people often baffled at this, autistic people will get it
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4 years ago today I founded
@DoctorsAutistic
When we started, with 7 members & a hope to offer peer support & some insights on autistic health, never in our widest dreams did we think we’d have over 700 members & such an impact on
#AutisticHealthcare
Happy Birthday to us 🎉🎂🍾
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Hard disagree 👇
There is growing recognition of how autism presents in women leading to increasing diagnostic rates. This is good.
Separately, autistic people are vulnerable to abuse.
This is bad.
The pathologising narrative of autism is another thing altogether.
I think everyone needs to be paying attention to the amount of women who have been subjected to abuse and trauma suddenly being told they have ADHD and autism.
This is the next wave of pathologisation after BPD and EUPD, mark my words.
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You can’t be neurodiversity affirmative & not support trans rights. You just can’t.
I’m devastated at what’s going on in ND medical spaces right now. I’m just sick.
#TransRightsAreHumanRights
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Imagine if the test required for an
#Autism
diagnosis wasn’t
“How have you failed at being neurotypical”
but
“Can you communicate in an authentically autistic way?”
#ActuallyAutistic
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Autistic people are a hidden minority among hospital patients, who face access barriers & difficulties interacting with healthcare providers.
Adverse health outcomes may be prevented if autistic people are recognised & needs are met
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How to tell me you know nothing about autism without telling me you know nothing about autism…
But not just uninformed, it’s discriminatory & probably open to legal challenge
I've just been told by my child's primary school that ear defenders are no longer allowed for autistic/adhd children because they are, "aiming to desensitize the children to noise so they can function in society." I'm sorry, but I'm calling BULLSHIT.
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Phone calls when you’re
#autistic
.
So hard to explain why they are so stressful.
School called unexpectedly. The one number I must answer.
I knew the munchkin was ok, I’d just dropped him off, so I wasn’t worried. What had he forgotten?
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Very proud of The Munchkin getting 1st vaccination today as he announced “I’m autistic, so just get on with it!” (What he meant - do it quickly & don’t stop if I get upset)
Staff were excellent. Straight in, no queuing. No chit chat. Allowed to wait in quiet room alone afterwards
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#Autistic
parents of autistic kids know our families can look very different to NT families.
We know, anecdotally, that autistic kids raised in Neurodiversity affirmative environments do better. I tell this to NT colleagues & I’m asked for evidence.
Is anyone researching this?
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@BrowofJustice
Wow! Mine is giving birth in the middle of my final year of medical school, getting an honours degree and breastfeeding for 3 years while working as a junior doctor.
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Honoured to be appointed as UCD Associate Clinical Professor at
@UCDMedicine
#AutisticHealthcare
New paper due out tomorrow
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Feeling low. Finally got caught by COVID after avoiding it for 2 years. Need to see my GP. Really struggling to arrange an appt. Knowing what the barriers are doesn't make it any easier. Accessing healthcare as an autistic person, even as a doctor, is really hard.
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Medicine selects for Aspie traits. Lots of us actually meet the criteria for diagnosis. All is good until demands exceed capacity to cope, then the wheels fall off. ASD should be specifically considered when doctors present in difficulty.
@aspiedoc1
@Psychautismcham
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New Paper📢
Barriers to healthcare: the human stories behind the statistics & a proposed model of how barriers may lead to poor health outcomes
With
@Autistic_Doc
@LCarravallah
@DrMonaJohnson
@StuartDNeilson
et al
@UCDMedicine
@BSMSMedSchool
@cads_lsbu
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“We also found that those who considered autism to be a ‘disorder’, rather than a difference or disability, were more likely to have attempted suicide.
Autistic doctors are a ‘hidden minority’, new study shows
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Devastated to hear
#stevesilberman
has died. Steve was such a valiant supporter of
@DoctorsAutistic
& our barriers to healthcare research. As
#autistic
people, we owe him so much. He got it, he got us & we'll always be grateful. Condolences to
@WardQNormal
, family & friends. RIP.
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I must confess a slight degree of satisfaction in watching people realise they underestimated me
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If I say:
“I’m a doctor & I work with autistic people”
the assumption is I provide medical services to autistic patients.
Not that I work with
#autistic
colleagues.
It’s a paradigm shift to see autistic people as
#AutisticProfessionals
, service providers not just service users
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I opened with “I’m autistic, I’m frazzled cos all this is new. It’s not anxiety”
She goes: “cool, I’ve 2 neurodivergent kids, hubby just dx’d w ADHD. I get it”
And yep, she really got it. She explained EVERYTHING, in detail.
I had the best ever healthcare experience today! A clinician who just “gets it” makes all the difference. It can even be lifesaving.
Come & learn how to manage autistic patients in the ED👇🏻
#MedTwitter
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Anyone who thinks these are two neatly defined groups with nothing in common simply doesn't know enough autistic people👇
“The term profound is not meant to demean anyone or label anyone as a lost cause,” said ASF's Alison Singer. “The whole idea of creating this nomenclature is so we are better prepared to meet the needs of this population and not pretend they don’t exist.”
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Dear non-autistic people,
If you know someone is autistic & you feel offended at something they’ve said, could you check for a misunderstanding before acting on wrong information please?
Thanks,
From me
And countless other
#autistic
people everywhere
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Please remove this book from the curriculum and from circulation, urgently.
Any school which has used this needs an autism awareness programme to counteract the damage done.
@MICLimerick
@NormaFoleyTD1
@josephamadigan
@AnneRabbitte
@AsIAmIreland
@Fi_ferris
@han_asiam
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I don’t think there is any way to make a non autistic person understand how distressing unexpected touch really is.
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“Great article but why did you identify yourself? Why not write anonymously?”
Because being
#Autistic
is not shameful.
We are
#DifferentNotLess
Yes, it’s still stigmatised, but we can change that by sharing our stories.
If we want to be seen as equals, we need first to be seen
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Masking... "can erode your sense of self... because you might make friends, but not feel like they are real friends, because they are friends with your mask rather than you" says
@HappeLab
Ouch. So true. So grateful for true autistic friends. But I wish I'd known earlier in life
The truth about ADHD and autism: how many people have it, what causes it, and why are diagnoses soaring?
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Colleague: can you work Friday?
Me: sorry, no, speaking at conference
C: Oh! What you talking about?
Me: Why autistic adults die at 2.5 times the usual rate
C: Huh??
Me: Life expectancy 16 years shorter, 30 years with ID
C: What??? No way.
Me:Yep
@AsIAmIreland
@bolte_sven
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Not only friendships but intimate partners & marriages too. When you realise you've spent years living with/ in relationship with someone who prefers your masked self to your authentic self - it's devastating for both partners. So important we stop teaching autistic kids to mask
Masking... "can erode your sense of self... because you might make friends, but not feel like they are real friends, because they are friends with your mask rather than you" says
@HappeLab
Ouch. So true. So grateful for true autistic friends. But I wish I'd known earlier in life
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@ChrisHopsonNHS
@DrK_W1984
@NHSEngland
@NuffieldTrust
@BBCr4today
Wonderful to see focus on ADHD, but for max efficiency services need to be neurodevelopmental & transdiagnostic. Co-occurrence is norm, not exception. Makes no sense to have separate ADHD & autism pathways, never mind Tourette’s, dyspraxia, hypermobility. They’re all connected
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GP waiting room.
Bright lights overhead.
Radio on.
Very cute baby opposite but random screeching.
Receptionist shredding papers - the noise!!
What a battle to stay & await a needed consultation.
Some days are tougher than others sensory wise 😢
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Different solution needed. Many professionals can easily & quickly recognise a child is autistic, yet instead of being able to make a diagnosis, must refer to overwhelmed specialist services.
‘Children put at risk’ as NHS autism assessments are cut back
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Honoured to be invited to contribute to the
@rcpsych
National Autism Training Program for Psychiatrists
@NHS_HealthEdEng
Thrilled to see growing interest & knowledge among general psychiatrists, which will improve mental health outcomes for autistic people.
#NATPpsychiatrists
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A very concerning precedent potentially set for
#autistic
employees:
"a matter of serious concern that Ms M had chosen to withhold her autism through “masking” throughout much of her employment, potentially putting vulnerable children at risk."
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Neurodiverse describes a population, not an individual
Neurodivergent describes an individual who falls outside the neurotypical majority
Neurodivergent is a neutral descriptive term. It’s not a bad word, does not imply abnormality or deviance.
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Exciting conference news - free, online, not to be missed, May 25/26
Neurodiversity - Shifting Paradigms in Mental Health
Speakers include
@SueReviews
@claruineill
@conor_davidson
@BendyBrain
@bernaharbor
@eva_loth
@AQuinnUnbroken
@IoNRDPU
@adhdireland
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Neurodiversity affirmative (NDA) is the new paradigm in the world of autism.
NDA assessment
NDA supports
NDA education
NDA healthcare
NDA autism research
A neurodiversity affirmative approach will transform outcomes for autistic people, particularly wrt mental health
#ITAKOM_CONF
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Is it any wonder more than three quarters of us avoid using the phone??
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I think school attendance should be optional for
#autistic
kids on dress up days. Proud of the munchkin for asking to stay home today
#Halloween
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Dealing with the
#COVID19
crisis when you’re autistic - some advice.
Most important: heed public health advice applicable to your region.
Public health is the medical specialty which deals with this issue and the public health doctors are the experts.
I’m not a PH doctor.
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As I write yet another apologetic email explaining why I am behind on work promised for this week I realise how much time the unexpected
#Spectrum10K
bomb impacted my life & that of
#autistic
advocates everywhere.
@Spectrum_10K
leadership, have you any idea what this costs us??
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Over 5k downloads in less than a month! We're thrilled that this framework seems to have resonated with so many, as a memorable way of understanding & meeting the needs of autistic people in healthcare settings. It's applicable to many other areas too.
Graphics by
@LittlePuddins
Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings
>5k downloads in a month, several projects underway, plans to incorporate into training in various specialties, in several countries
#AutisticHealth
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Simple accommodations save lives. For autistic patients it’s the phone. 78% avoid using it & 60% would delay or avoid a doctors visit because of needing to phone for an appointment.
@Webb20Richard
@davehartin
I’ve never forgotten a speaker at CEM conference in Exeter - ?Ann Marie Kelly - saying that one of the reasons teenagers with brittle asthma and DM1 delay coming to ED is b/c of dread of pain of ABGs. Hence, failure to use LA routinely can cost lives. And it’s plain mean!
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@JuditeeS
Is it done or submitted yet?? If not, I would suggest "misunderstanding" the task and frame it in terms of how wonderful it is that in spite of his challenges he has managed to achieve 94% attendance and how proud he is of himself!
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If you’re not autistic, this might not seem like much, not enough to explain school absence👇🏻
I am autistic, I understand this on a visceral level. I *still* remember the nauseating smell of a school lunchroom 50 yrs ago
It is enough. We need accessible schools
@Autistic_SPACE
#Oliverscampaign
I cried reading this:
I have been given permission to share this autistic childs thoughts on school & why it is inaccessible for her
#SEND
#autismacceptance
#AutismAwareness
#edutwitter
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A dear friend, also autistic, experienced a hurtful silencing & discrimination. I commiserated by sharing a similar experience I had faced. My friend knew I got it & felt validated.
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Thinking of all the
#Autism
Professionals who’ve never (knowingly) met an autistic adult, have no idea of our needs.
In a group of
#autistic
adults our needs are familiar - easily understood & accommodated.
#AutisticProfessionals
can help bridge the gap.
#AutismAcceptanceMonth
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Thrilled that consultants are messaging me to say they're sending our Autistic SPACE paper to their incoming August teams as a pre read. This is exactly the sort of impact we were hoping for when we wrote it
@SueMcCowan1
@Autistic_Doc
#AutisticHealth
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Fascinating & important paper linking neurodivergence, hypermobility & emotion regulation from
@BendyBrain
& colleagues. Relevant to all
#neurodivergent
/
#autistic
people. Important to recognise
#hypermobility
for physical issues, but now also for mental health implications too
Exciting new
@BSMSMedSchool
brain-body research. Role of
#proprioception
and
#hypermobility
in
#emotions
in
#neurodivergence
published by
@royalsociety
. News item here: . Full paper: Thanks
@LisaQuadt
@DrSFink
and
@CritchleyHugo
and
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Has anyone looked at
#autism
incidence in ex-pat populations?
We seem to do well when we emigrate - our oddities are often put down to cultural differences.
#AskingAutistics
#AutisticsInAcademia
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I’m now parked in the hard shoulder of motorway, shaking, waiting for the adrenaline spike to settle before I drove off again.
Feels kind of like when you just barely avoid a major car accident.
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Our normally *very* bright office had low light intensity today for some reason. Bliss.
Suddenly back to normal without warning. I yelped in pain & covered my eyes
Others didn’t even notice til I explained
Glad of colleagues keen to understand what it means to be autistic
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I do wish there was an academic search engine that only returned results from autistic researchers or trusted allies & filtered out all the pathologising nonsense. Suggestions welcome.
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I’m very grateful to my 2 neurodivergent munchkins who are happy for me to use their stories along with my own to illustrate the importance of switching from traditional pathology & deficit model to neurodiversity paradigm
A neurodiversity-affirmative approach will save lives
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“Training taught me to associate autism with lack of ability to share & understand the feelings of others—a lack of empathy—that simply didn’t describe my son. Accordingly, I assumed that either a) my son was not autistic, or b) much of what I had learned about autism was wrong”
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Such an important paper from colleagues at
@BSMSMedSchool
@BruceTamilson
@BendyBrain
&
@Autistic_Doc
Receiving an autism diagnosis was life-changing, deeply validating, allowed them to be their true authentic selves, improved mental health
Accurate diagnosis matters
#AutismNotPD
🗞️ NEW PAPER 🗞️
Experiences of
#ActuallyAutistic
adults previously diagnosed with BPD/EUPD
"misdiagnosis carried stigma, introduced diagnostic overshadowing, & led to harmful experiences... they felt powerless to challenge it"
Read free:
@BSMSMedSchool
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Prompted by a question to
@DoctorsAutistic
If you are autistic, would you attend an
#autistic
GP if you could?
Would you move house to register with an autistic GP?
Not necessarily uproot a family, but if you were moving anyhow, would it influence your choice?
#AskingAutistics
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@AnnMemmott
I know, it’s shocking isn’t it?? No autistic person would subject another to this onslaught, yet the non-autistic professionals don’t even see the issues we see & feel.
Who has the empathy “deficit” here???
@milton_damian
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My second
#INSAR2021
poster
#429
.007
Autistic Adults & Psychiatry; Experiences & Barriers to Access with
@JesscaDoyle
@DrMBotha
@StuartDNeilson
@SueMcCowan1
Danni Burke, Jane O'Sullivan
@lgallagh_louise
Data collected
@autscape
See thread for individual sections 👇👇
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I had an important admin task planned for this morning. There is NO chance of that happening now.
All because of one unexpected phone call.
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"Good intentions" don't prevent you causing harm to autistic people.
@Jo_Frost
you've a huge platform & you've got this one wrong. Please have a read of this 👇esp the 3rd para for the enormously positive impact you could have by shifting your position
Absolutely 💯 the Austistic community decided to use my tweet and misrepresent it's good intentions. I support this community, they are unheard and under supported yet here we are. It is okay, not everyone is going to understand your written messaging or intentions. 🤍🦋
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To non-autistic people:
Autistic people do not seem odd to other
#autistic
people. I mean, we can often see why you think we’re odd, but you guys seem just odd to us as we might to you.
If you are a parent of an autistic kid, help them find a space where they are not seen as odd
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Disclosure bonus - great chat about
#autism
yesterday with clinic nurses.
Arrived to clinic this afternoon to discover they had swapped my office from an internal one with horrendous lighting & extractor fan to a lovely quiet room with natural light - without even being asked!!!
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I’m absolutely shocked to realise what primary school kids in Ireland are reading about
#autism
.
“Lift Off” ftom
@CJFallonLtd
For 4th class, impressionable kids of around 10yrs.
- Wishing for a pill to take autism away
- Wishing he was a “regular” brother like a friend has
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Wondering if this speaker knows autistic girls exist?
Or that some of us are in the audience?
#profconf
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We need to stop shaming
#autistic
kids for not being neurotypical.
Need to stop teaching them to camouflage.
Need to recognise the beauty of who we are and own our right to live our lives as our true authentic selves.
Proud to be
#ActuallyAutistic
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It was so blindingly obvious I was autistic as a small child - if only anyone had known what that meant back then.
I’ve lost count of the “reasons” I was so odd.
Wonder how things might have been different if we’d known.
Fewer battle scars, for sure. Probably not a doctor.
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Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings
>5k downloads in a month, several projects underway, plans to incorporate into training in various specialties, in several countries
#AutisticHealth
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“The rising leadership & participatory involvement of autistic people in autism research”
Exactly that - the reason for all the recent diatribes.
Let’s just keep training & supporting
#autistic
researchers til culture changes & we enjoy parity of esteem and safety to disclose
Spectrum's coverage of the rising leadership and participatory involvement of autistic people in autism research has had a consistently toxic effect, embodied in this article.
I've therefore been informally boycotting Spectrum, the autism specific news site & here's why
a 🧵
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Increasing recognition of
#Neurodiversity
in medicine across all specialties. This benefits both autistic healthcare providers & autistic patients. Thanks to
@TheBMA
for helping to spread the word.
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@dudeimreading
I love “peer reviewed” 🤣
We used to hear “self identified, community confirmed” quite a lot a few years back but I haven’t heard it in a while. It’s absolutely a thing. Put anyone wondering in a room with a few of us & we’ll figure it out pretty quickly
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This is a heartbreaking thread. Yet every bit resonates. It shouldn’t have to be this hard. It’s also why peer support is so important. None of us can battle this ableism alone & expect to survive intact
1/ I’m doing a MA in Social Work because I want to improve how disabled people are treated in Ireland.
I never realised how difficult it would be to be in a course where students and lecturers constantly and confidently say awful things about disability as if it’s common sense.
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This paper brought me to tears. Hopeful tears. Hope for our kids, for future generations of autistic people.
“This raises the question whether we should intervene early in the development of autism in the first place,
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The first paper from this project on experiences of autistic psychiatrists is currently with the participants for comment before submitting hopefully next week. Watch this space!
Well received
#GAPsych22
poster led by
@AutisticDoctor
Open disclosure of autistic psychiatrists is rare, particular barriers may be faced but there’s potential to reframe understanding of autism & improve healthcare outcomes
#Autism
#NeurodiversityInMedicine
@APApsychiatric
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I’ve just had the best speaking experience *ever*
@_NIMDTA
Talking about
@Autistic_SPACE
to medical & dental educators. Never have I felt so welcome, so well understood & accepted. What made the difference? A 🧵
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While it's good that the issue of
#AutisticHealth
is covered, we are deeply upset that
@BJGPjournal
changed the language from IFL to PFL after we had approved the final proof
Overcoming barriers to autistic health care: towards autism-friendly practices
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