How unsafe do Autistic and intersectionally marginalised people feel in your presence?

The biggest fears of Neurodivergent, LGBTQIA+ and Disabled people relate to unmet healthcare needs, their work environment, their parents, and disrespect by healthcare professionals. Data from our participatory research shows the large overlap and the intersectionality between Autistic communities, and the LGBTQIA+ and Disabled communities.

This article presents Dr. B. Educated participatory research data in a visual format, and provides context in terms of the demographics covered.

If you are mainly interested in a summary of the results and in recommendations for clinical practice, you can navigate straight to the conclusions, and to the steps you can take towards making healthcare environments more accessible and safer for intersectionally marginalised people.

How safe do intersectionally marginalised people feel?

Our survey data on the relative safety people experience in different spheres of life is from an ongoing survey of marginalised populations, currently limited to 129 responses, which an emphasis on lived experiences in healthcare settings.

If you are part of a minority group, you can greatly assist our ongoing efforts by contributing your lived experiences to our anonymous survey Feeling Safe.

Demographics

Geography

Intersectionality of Autistic communities

How feeling unsafe is experienced

Lived experiences from clinical environments

This section only features a small number of examples from our growing database of participatory research.

What are the most important things you wish healthcare professionals to know, respect, and do, when engaging with you?

I wish they wouldn’t make assumptions about autism. I have sensory challenges. Informed consent is a must. Do not order, push, or try to change my mind about treatment. I will decide what I can do and what I want. I believe in self advocacy and working as a team with healthcare providers. I don’t do well with anyone who wants to tell me what to do. I haven’t met many who understand the needs of autistic people.

Clarity and not get upset if I ask them to repeat the questions, and wait if I don’t respond fast enough.

That autists can have higher sensitivities to life stressors, which affects every part of health.

That if I am bringing a problem to them, I have already spent a lot of time learning and thinking about it and they should be open to asking me questions instead of dismissing my concerns based on my history of depression/anxiety.

Don’t lie to me, or lie by ommission. Do not withold information for fear I will be upset by it. Lay everything out as it is. I cannot make informed decisions if I am not properly informed. In the sam vein; I will take everything you say at face value. If you mince words, if you exagerate or hold back, I will not realise. I will not read between the lines and put together your puzzle. Just because I seem okay, it does not mean I am. I have had decades of practice at acting “normal”. That mask doesn’t drop just because I’m in pain, physical or mental.

I don’t always feel pain or discomfort the same way as others, and I can take longer to process new information and formulate questions about it. Encouraging follow up emails would help.

Listen and believe my experience.

Our bodies are all holding so much trauma.

My experience of pain and responses to treatment in psychotherapy and medical settings (i.e., anesthesia does not work as expected in my body); and all mental health and medical treatment must be managed differently to prevent iatrogenic harm.

They need to understand when you upset someone with communication difficulties, it amplifies those difficulties. That it steals our words. I need them to listen to me when I talk and to believe what I have to say. To consider it at face value as I describe it, not twist and warp it with intent into something it is not. It is important to allow me to start where I need to in the process of medical history, starting in the middle can be hard. The forms should be more detailed; tell me if you want 2 years or all of my medical history.

Even though I am a grey haired middle aged autistic bisexual married woman, I am not stupid. I am often treated as if I am somehow low in intelligence. My IQ is around 146 +- 10. People expect me not to be able to use my cell phone, not to understand simple medical explanations etc. The lightning in the doctor´s often is very difficult, and all stimuli is overwhelming.

I hear you when you’re talking about me even when I don’t appear to be listening or capable of hearing. I’m afraid you will kill me. My personal experiences and the experiences of my family and the experiences of others taught me this fear. When I may be in need of medical attention I consider whether I am ready to die in your care. If you are engaging with me it will be because I think the risk of dying is higher without at least attempting to get medical help. If that happens: Please do not disparage me, or make fun of me, or laugh at me, or punish me with your power because you are angry at me. Please know that I am not trying to be difficult, ever. Please help me by asking me questions and listening to my answers. Please ask me if I have questions and reply respectfully to those questions if I do. Please let me offer solutions to your gown and other things that cause me distress while I am being treated. Please don’t lie to me. Please know that I am terrified, even when I do not appear to be. I may not be able to speak or hear well. I may seem to be resistant to things that don’t make any sense to you. I would need you to explain why you are doing what you are doing. I am very courageous and can put up with many painful and invasive things if necessary but I need to understand. I am slow processing but I can and do understand a lot. I’m capable. Please give me time, information, and choices. That said, please listen to what I am telling you about my body and my symptoms. I am listening to you. I am not lying. I understand that I can be wrong. I am not thinking I know better than you. If I did I wouldn’t be there. Please do not force me or manipulate me physically or otherwise to do things you want me to do.

Have you had any traumatising experiences in healthcare settings that no one should ever experience? Please outline.

Yes. Pushing of invasive screenings. Disrespect of my bodily autonomy and informed consent. Rough exam. I avoid going to the doctor at this point as no one is autism and trauma informed.

I was in the ER after my hip had dislocated for the 3rd time. The doctor never visited me prior and after my resetting of my hip. He also left the hospital to go to his private practice without giving an order to the discharging nurse to remove my catheter. I personally had to call his office. When I asked to personally speak to the doctor he refused and I was embarrassed to tell the receptionist that I needed to have him call the hospital and give the order to remove the catheter. I was so upset my words were mumbled, I shut down from anger, and cried all the way home. It took hours to regain my composure.

Yes. I have had a male doctor pretty much kick me out of the patient room. I had a female doctor misdiagnose me with a rare brain disorder and put me on the wrong medication; when I told her it wasn’t working she upped my dose. She refused to hear any of my other symptoms or complications. Not many doctors understand the consequences of sensitivity on the body. My therapist didn’t even recognize my autism until I got diagnoses through my psychiatrist.

Yes, too many and I’m going right now with a breast cancer diagnosis with 0 accommodation .

Yes, multiple. I respond differently to anesthesia and have had horrifically painful surgeries while fully conscious and feeling everything. I was repeatedly misdiagnosed with major depression, generalized anxiety, and borderline personality disorder and mistreated as a result in subsequent treatment settings. I am a mental health professional.

I am partially from a Muslim background- during my second appointment with a talk therapist, I mentioned a poor relationship with my father, and she immediately assumed that his poor attitude towards me was due to his religious background. She kept insisting on this even after I explained that the issues were clashes of personality between two people living in the same house (he is impatient and quite extroverted, I do tasks slowly and am almost asocial).

Yes. People not respecting my pronouns, my gender. Doctors not wanting to treat me for being trans. Having my illnesses minimized due to my mental health diagnosis.

My former psychologist used to invalidate me because I began to unmask my autistic traits. I left because she did not want to understand anything about my experience in the world.

Safety of work environments

Our survey data on the safety of work environments is from an ongoing survey across all sectors of the economy, across a population of more than 320 workers, of which more than 10% identify as Neurodivergent, LGBTQIA+ and/or Disabled.

You can greatly assist our ongoing efforts by contributing your lived experiences to our anonymous survey Psychological Safety. We would love to expand our dataset to be able to compare differences between various sectors in the economy and between the lived experiences in different geographies.