Addressing autism in clinical and service situations.
Having lived a long life I have had many encounters with medical, clinical, hospital, therapy, and other situations where I have been given treatment of one sort or another. There have been some really good experiences, but also some very bad ones.
Many diagnosed autistic adults now carry Autism ID or explanations in their wallets to help interactions with first responders. Many have identifying medic alert cards, bracelets, tags, etc.
There is even a trend to carry “medical passports” explaining autism and special needs surrounding the individual. I like that idea. I carry autism ID and will be working on creating an explanatory passport which I will ask to be included in my files ( or for my family to do that if I am not able at any point) I can do that now because I understand I am autistic.
But many of us are still unidentified as autistic through lack of diagnosis, etc. We are likely the “difficult” ones. I am sure I have been difficult in some of these situations, but it was never my intent.
I have realized that my most positive experiences in these situations had some common elements.
The treating personnel identified themselves to me and addressed me when first approaching me. They told me what they were there for, what they would be doing, and answered questions about how, why, etc before they proceeded with exams, treatment, etc. I was able to cooperate with full understanding from then on.
Statement of intent and then full explanation with discussion if necessary may not always be practical if it is an emergency situation where life saving techniques are urgently needed, but even there, as treatment is being given, it can be explained, with the professional first stating their identity and explaining as they work.
In every bad experience I have ever had, people approached me and put hands on me directly without telling me who they were, what they were doing or about to do, and without explaining why, what would happen next, etc.
Example: I went through a series of doctors for treatment of a broken arm and subsequent therapy, and not one of them explained a thing, neither support staff or the doctors themselves.
Not one gave me the opportunity to ask questions at any point, certainly not before beginning to examine me or treat me.
The diagnosing doctor and the treating orthopedic specialist evidently hated each other and had an ongoing feud. I had no idea, and every thing I told the orthopedic doctor about what the diagnosing doctor had said was misinterpreted possibly deliberately, ( although my autistic understanding and word for word quotes did not actually convey what I understood later as the diagnosing doctor’s intent) with fury.
I was not treated the same as the orthopedic doctor treated most of his patients, and I did not understand this until I spent a lot of time thinking about this 6 months treatment and its progress long after it was over, and I began to pick apart the experience from my new understanding of my autism.
There was not explanation of anything when my cast was removed, what to expect, how I could help it, nothing. I drove home in pain trying to use that recently freed arm fully in spasm and violent cramps with a stick shift car through unknown city streets with two small (autistic although I did not know it then) children in the car. Maximum stress on several levels which could have been avoided if I had known what would happen and asked somebody else to drive us home.
I was not prepared for subsequent physical therapy, nothing was explained, my arm was in intense pain and I was defensive. I was taken down a long shadowy corridor full of sounds into a closed off room where I was made to wait. Then finally somebody came in and grasped my shoulder and elbow and began to twist it. She did not introduce herself or explain what she would do. Perhaps I should have understood but I had a full blown panic attack , asking what are you doing. She said I am going to assess you, without further explanation and tried to grab me again. She was angry, I was being difficult. I asked again, what are you doing, she said the same thing, only louder, and I pulled away.
She went to get her boss and he addressed me with impatience and aggravation. I refused to see the same therapist and he brought somebody in who very quietly explained what was going to happen, why, and how, and who asked permission before they touched me. It was a series of events that had not needed to happen. I had been confused and frustrated from the beginning, trying to understand what was going to happen, how and why at every turn, with not a single explanation offered. I was angry, fearful, defensive, and frustrated. It did not have to be that way.
Here is a simple formula which would do no harm for any professional addressing any patient or client.
Explain what you intend to do, explain how you will do it and why you will do it.
Invite questions for further explanation if needed.
With autistic folks you might have to draw a sketch or give somebody a brochure or pamphlet that explains complicated procedures. Not all of us understand well from videos, but some of us will appreciate demonstrations visually as the best way to explain.
Then when it is understood what will happen and why, proceed by asking permission to touch the subject to allow a bit of time to prepare for that interaction.
I can’t imagine how this would be undesirable under any circumstance except in cases of true emergency where seconds count.
Introduce yourself, state intent, then explain before proceeding.
Repeating the same words only louder when asked a question or for explanation only pushes panic and fear, and builds resistance due to anxiety in an already confusing, frustrating, fear inducing situation, often while we are in pain.
I think about the stress and distress in several medical situations where this would have saved everybody a lot of headaches and problems.
Introduce yourself, state intent, explain and then proceed.
I carry emotional trauma with me from some of these experiences. Deliberate cruelty and angry, vindictive and resentful behavior on the part of staff, (punishment meted out when the subject is confused, bewildered, and in pain) is unacceptable, but I have been treated that way on several occasions without my understanding why.
I have managed to sort a few of these experiences, but others are still unexplained in my position as subject/victim and my autistic understanding. ( or lack thereof).
Everybody is human, medical folks and support staff are pushed hard and spend long hours in service to others, and can have bad days just like anybody else.
I do understand that, but I hope that others can avoid distress and painful experiences through some simple steps that might make things easier for those of us whose understanding may not be complete.
What is obvious to some who are familiar with procedures may be bewildering and frightening to others. Thanks for your patience and compassion in looking beyond appearances to understand.