Nurse Ed

A list-member asked for suggestions about what information would be useful for nurses interacting with AS/autistic patients. I responded:

1. Don't make assumptions based on one aspect of a person. I've met autistics who "present" (i.e., look superficially) "retarded." As they sit silently (possibly stimming and/or looking off in the distance as if not paying attention), an uninformed-about-autism person might assume this person was not able to think/reason/participate in his or her health-care decisions. And yet, when comfortable in a situation, that person will come out suddenly with a fully reasoned, highly intelligent comment -- often taking unprepared people by surprise (can be amusing to witness). It's better to assume competence and intelligence (whatever is meant by that word!) than to judge by a non-standard appearance and assume incompetence.

2. Don't make assumptions of ability/disability based on one aspect. A person who can discuss molecular physics intelligently may not be able to handle some tasks the nurse sees as "easy" (e.g., remembering appointments or to make follow-up appointments, some daily self-care chores, expressing his/her own feelings/needs). To quote from my own Snippets page ("What Supporters Need to Know"): Some of us are of at least normal intelligence (whatever "intelligence" means) but have areas in which we are "stupid" by NT standards. Therefore it is not a good idea to assume, "She's smart, so she'll be able to do _____." Nor is it a good idea to assume, "She can't do _____, so she must not be very smart." If an autistic adult has an aide, that doesn't mean the nurse should talk to the aide and ignore the autistic patient.

3. If the patient does not seem comfortable or forthcoming in conversation, explore to find out if alternate means of communication would be helpful. Many autistics I know would love it if their health-care practitioners were willing to read during the appointment. It would be a lot easier for me if my doctor would read an account I brought in, describing the problem I'm having. Some autistics would find it easier to "talk" to a nurse if it could be done with a keyboard or even pen-and-paper. Many autistics need more time than most NTs to "access" the information with which to answer "easy" questions like "how do you feel" or "what is the pain like." Some autistics need more time than usual to process the words said by the nurse and then come up with the words for a response.

4. Don't assume that the autistic patient's emotional reactions are going to be the standard ones, and don't assume the autistic patient's emotions can be "read" by the same standards as NT ones. For example, I am often seen as very angry (even threatening) when I'm only frustrated. When I am frightened or feeling in crisis about a pain or illness, I "present" with "flat affect" that causes the practitioner to think (apparently), "Well, this can't be anything serious or she would be more upset." Their reaction is highly frustrating, given that I am in great pain and/or frightened by what is going on in my body. Sometimes the only way I've been able to get any attention is when I have a "meltdown." I hate that. And I shouldn't have to undergo the huge stress of a meltdown in order to get the medical attention I need.