The Autistic Collaboration Trust in collaboration with S23M Healthcare Solutions is working with healthcare professionals to facilitate sector wide education in the neurodiversity paradigm, the neurodiversity movement, and Autistic culture.
The level of ignorance, stigma, and open hostility that Autistic patients and Autistic healthcare professionals regularly have to deal with is traumatising. In terms of safety, many Autistic people have a strong preference to engage with Autistic or at least otherwise neurodivergent clinicians. Encouragingly, committed allies of the neurodiversity movement, such as Dr. Zoe Raos (Te Āti Awa), a gastroenterologist in Waitematā, Tāmaki Makaurau, are starting to speak up about the lack of cultural and psychological safety for Autistic patients and colleagues.
I told a Dr I was diagnosed Autistic and suspected ADHD and she told me I couldn’t be Autistic because I had good empathy and made good eye contact.
Locked up in a psych ward and isolation room when I was 19. I’m 38 now. I avoid thinking about it most of the time.
Blamed for most everything that happens to me physically and mentally, even if I can’t possibly be at fault. Doctors seemingly don’t listen, don’t comprehend the details provided, and make incorrect snap judgements just to get you out of their office because there’s “too much going on” and “too many symptoms”. They tune out when I list what’s happening.
I had a paediatrician growing up who did a pelvic exam on me every time she saw me and was never willing to explain why. One of my PCPs (as an adult) waited until I was in the middle of a endometrial biopsy (already very triggering from previous trauma, and painful, too) to apologize for misgendering me throughout the entire procedure. Other PCPs have tried to force speculums in me that were too large and one MA warned them that they might not have another option because “we don’t normally stock the smaller ones”.
My therapist is neurotypical, and she tries her best. Sometimes, she reverts to the pathology paradigm, and it makes me question the basis on which I think we’re working together. It makes me realize she doesn’t see me and our community the way I think she does, even though she tries.
Education is essential for addressing entrenched problems of lacking cultural and psychological safety in the workplace, and corresponding problems of lacking cultural and psychological safety for patients, their whānau / families and communities.
Our diverse team includes experienced clinicians and professionals with many years of academic teaching experience as well as experience in delivering training courses to executives and knowledge workers in a broad range of industries.
The AutCollab Education Team
- Jorn Bettin, Aotearoa New Zealand
- Dr Juanita Fernando, Australia
- Christyanne Gaspar, United States
What Autistic people want you to know, respect, and do
In one of our recent education workshops community members and clinicians concluded:
Your own quality of life as a service provider will improve if you fight for systemic changes. Advocate for the wellbeing of neurodivergent patients, and we will also support your fight for better working conditions. We need systemic change. We are all in this together – neurodivergent patients and medical professionals. Health sector reform is needed. We can jointly gather data and insights from all sides, and jointly engage with governing bodies who don’t have the capability of doing transdisciplinary grassroots research.
Eighty per cent of autistic adults and 37% of non-autistic respondents reported difficulty visiting a general practitioner (GP). The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72%), difficulty making appointments by telephone (62%), not feeling understood (56%), difficulty communicating with their doctor (53%) and the waiting room environment (51%). Autistic adults reported a preference for online or text-based appointment booking, facility to email in advance the reason for consultation, the first or last clinic appointment and a quiet place to wait. Self-reported adverse health outcomes experienced by autistic adults were associated with barriers to accessing healthcare. Adverse outcomes included untreated physical and mental health conditions, not attending specialist referral or screening programmes, requiring more extensive treatment or surgery due to late presentations and untreated potentially life-threatening conditions. There were no significant differences in difficulty attending, barriers experienced or adverse outcomes between formally diagnosed and self-identified autistic respondents.
– Doherty M, Neilson S, O’Sullivan J, et al. Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study. BMJ Open 2022;12:e056904. doi: 10.1136/bmjopen-2021-056904.
I wish healthcare professionals understood how little they know about autism. Some of them have been taught some things, but most of those things are wrong. I wish healthcare professionals understood that, so they could leave what they think they know behind.
Respect natural and traditional ways of knowing. Accept and respect lived experience as valid. Have a desire to know how to serve neurodivergent individuals. Be open to learning and take initiative in learning. Avoiding condescension, patronizing, and othering. Reject patriarchal structures and attitudes.
Just treat me with respect and know my boundaries. I hope they take me seriously and hope that they don’t think that I’m disrespecting them with my behaviours.
Know and respect my intelligence and knowledge and tell the truth.
That I am telling the truth about the gravity of my difficulties and that these difficulties do not make me lesser. That I am their equal as a human being.
I’m autistic, I’m not a child, I can decide for myself.
I expect to be heard and heeded. To no longer be dismissed. Open your eyes and brains about pathologization and dehumanizaton of neurodivergent/others. Stop assuming all humans are identical. Stop talking down to me, stop infantilizing me. Stop telling me you couldn’t tell I was Autistic, that “I don’t look Autistic” as if that is a compliment.
I wish they would listen without judgement. I wish they would take on what we say we believe about our bodies and ourselves. I wish that they would have more education and information on how Autism and ADHD present in women.
Learn about Autistics from Autistics. Throw away your DSM understandings as they are steeped in outdated understandings of Autistic Ways of Being.
Lived experienced trumps everything they ever learned in school because they never learned the right things. Medical and psychological training has got to be decolonised. Stop telling me who I am, what I experience, etc. Ask me. When engaging with me–we collaborate. You are the consultant but I am the client. Not the “patient.” Be interdisciplinary! Learn from neuroscientists and occupational therapists and anthropologists. [I am one of the latter.] Medicine and psychology are ghettoes, bubbles, isolated, out of touch with the 21st century. Because my nervous system diverges from the norm, medications work differently on me–and my children. Don’t disregard that. And please don’t put me on meds to shut me up! (They did it again!)
Not judging me unfit like eugenicists. Because this is mainstream in the healthcare system.
If I tell you it hurts, it hurts… You are the doctor, maybe figure out why it’s hurting, and figure something out to help it hurt less instead of blaming me for feeling pain.
I like to ask lots of questions but it’s just so I can understand the rules they are setting for me and my care. Once I understand, I am a good rule follower; I’m not being difficult or oppositional.
Understand that when I offer a large amount of information on what I’ve come to discuss, it isn’t an obsession, it’s that I like to be informed and prepared. When I ask about a specific diagnosis, it’s because I have spent a good amount of time researching the possibilities before I even dared bring it up.
Support includes flexibility, inclusivity, accommodations, and knowledge. It’s not enough to go “ok, cool” or “I support you” and go on as if nothing’s changed after a client or patient has told the provider that they’re queer, neurodivergent, or belong to another marginalized group that may require cultural understanding or accommodations in order for them to receive compassionate, effective treatment. Being an ally isn’t just about not being a jerk, it’s also about being active in creating inclusive and safe spaces for marginalized people.
Our collective voice
The voice of Autistic data is loud and clear. The neuronormative society that surrounds us does not allow us to feel safe. Our research aggregates data from Autistic people from all over the world.
Are you afraid to be your authentic self?
Are you afraid of raising problems?
Frequency of negative feelings
Learned coping strategies and trauma responses
Symptoms of trauma and chronic stress
The biggest sources of Autistic fears
Dr B Educated
- Dr B Educated – professional development & research
- Intersectional employee wellbeing for healthcare professionals
- Community oriented health service co-design
- Education in the ND paradigm, the ND movement, and Autistic culture
- Autistic trauma peer support
- Bullying alert system for employees
- Psychological safety baseline data collection
- Te Hapori Whai Takiwātanga o Aotearoa, Aotearoa
- On human collective behaviour
- On the ND paradigm, the ND movement, and Autistic culture
- On Autistic wellbeing
- Communication in healthcare settings
- Intersectional cultural and psychological safety across all aspects of life
- Intersectionality and neurodiversity around the world
- What Autistic research are you involved in or would you like to see? Join us!
Autistic lived experience
The quality of our education services depends on the breadth and depth of lived Autistic and otherwise neurodivergent experience that we can draw on.
As an Autistic and otherwise neurodivergent person you are invited to support our education efforts via reports of your lived experience in healthcare settings. As needed you can remain entirely anonymous to protect yourself from further harm.
All your contributions are greatly appreciated. You are also invited to join our non-public online knowledge exchange for Autistic patients.
Your experience in healthcare settings
We will only use your email address to ask any clarifying questions we may have, to keep you informed about further opportunities to articulate unmet healthcare needs, and to address questions that healthcare professionals may have about how to best support Autistic people in accessing and receiving the best possible care.
An example of an Autistic patient experience in a hospital setting
(United States, 2021)
I’m incredibly happy to contribute as much as I can. This is an extremely important subject. You are providing a way for those of us who have horror stories to turn them from internal turmoil into positive, necessary worldwide change.
The healthcare professionals involved knew the patient to be Autistic, but their lack of understanding of Autistic ways of being was dangerously inadequate. The patient has significant sensory issues, with intolerance to light touch, which is experienced as worse than physical pain. The toxic stigma attached to Autistic people and ignorance about Autistic sensory differences and related needs amongst clinicians and nurses led to deeply traumatising and dehumanising treatment of the patient over the course of two days.
Sequence of events
1. The patient was intubated for 5 days to address respiratory problems.
2. The patient woke up in the ICU, did not know where she was, was alone, and nothing around her made any sense.
3. When she tried to talk, she could not, as the vocal cords were not in a functional state following the intubation.
4. Healthcare professionals approached the patient to measure blood pressure, take a blood sample etc. without adequate communication with the patient and without consulting about sensory needs.
5. The patient pulled away upon being touched and resisted the procedures.
6. When the patient refused her arm to be touched, the healthcare professionals interpreted the behaviour as non-compliant and violent.
7. Security was called and the patient was restrained. The patient had an immense feeling of being completely powerless and helpless by being completely restrained (hands and feet) and unable to talk, and then being put in a state of intractable sensory overload.
“The nurses wouldn’t even look or interact with me in any way whatsoever. It was as if I was just something lying on the hospital bed that they had to do things to. Not a living, breathing, feeling person.”
8. For the next two days following the intubation, the patient was tortured, endured immense pain, and was overwhelmingly uncomfortable, before finally being discharged.
9. The patient still has flashbacks and nightmares a year later, and is seeking trauma therapy to work through this experience.
“I had already been diagnosed with PTSD from unrelated life experiences prior to this, but it has most certainly been worsened by this experience.”
The longer term impact
Overall health ends up declining
In terms of another long term impact, having experiences such as this makes me very hesitant to seek medical care going forward, even when clearly needed. I feel the impulse to avoid hospitals at all costs, even when it is plain (or even strongly recommended by my outpatient doctors) that I should go to the emergency room or urgent care. As a result, my overall health ends up declining, when it might not have had I felt able to seek treatment.
On top of that, in addition to the trauma from this experience and others, it is also difficult for me to go to emergency rooms, urgent care and even some doctor appointments by myself because I find it difficult to clearly and concisely explain why I’m there. I also find it difficult to appropriately express pain and discomfort, so oftentimes they don’t understand how much pain and discomfort I’m actually in, as I tend to automatically hide such feelings.
Today, I usually only find myself in the emergency room upon waking up after seizure, after 911 had been called on my behalf.
Disclosing vs masking Autistic identity
As for society, I almost always feel safest (emotionally, socially, etc.) to “mask” in public and/or not disclose that I’m autistic. However, that is extremely exhausting and uncomfortable to do, and I ultimately wind up staying at home as much as possible as a result. It is not a full life to live like that.
In healthcare settings, sadly I typically do find I get better healthcare if I don’t even disclose that I’m autistic.
But oftentimes I have to disclose (e.g., when I’m in a hospital setting, when I’m unable to mask effectively), and I almost always see a marked decrease in the quality of care that I receive compared to when I don’t disclose it. It is frightening, to be frank.
Autistic ways of being
- Communal definition of Autistic ways of being
- Introduction to Autistic ways of being
- The timeless and universal architecture of safety
- Frequently Asked Questions
- Autistic Collaboration TV
Campaigns / projects
- Ban of conversion therapies
- Appreciation of neurodiversity in the healthcare sector
- Autistic communities in public libraries
- Strengthening the local neurodiversity movement, Auckland, Aotearoa
“Your insight and opportunity to explore such an important topic seems to have left the students with a desire to facilitate change. For many, they believe the insight has changed their lives and for others who e-mailed me they said the learning has helped them on a personal level. It comes as no surprise that many people can relate to ‘mask wearing’.”
– Liz Gordon, Professional Practice Fellow, Otago Business School
“Thank you! These articles and this collaborative empowering movement has been life saving for me and my family. We were confused outsiders before this community connection. And more than that it has enhanced my own understanding of humanity.”
– Healthcare professional in New Zealand
“This is fantastic. Thank you so much. It’s great to see a description [of Autistic ways of being] from an Autistic person’s point of view – our preferences, our experiences etc. I hope this is used as a basis for research on how to improve mental health for the Autistic community.”
– Feedback on the Communal Definition of Autistic Ways of Being