February, National Heart Awareness Month, is a good time for medical professionals to take a look at supporting autistic adults in maintaining healthy hearts. But how easy is that? Many physicians specialize in their own particular field, and a cardiologist does not necessarily know very much about autism. Spectrum News posted an article (https://spectrumnews.org/news/primary-care-doctors-unprepared-to-help-adults-with-autism/ ) describing how unprepared many primary care doctors are to work effectively with autistic adults. They reported that autistic adults face health challenges, such as heart disease, obesity and diabetes, at a higher rate than the neurotypical population. Some possible reasons for this include:
- severely self-restricted diets, due to intense sensory responses;
- limited exercise, due to poor motor control or overreaction to vestibular (balance) or proprioceptive (deep muscle or joint) sensory experiences; and
- avoidance of doctors’ offices for routine health exams and preventive care, due to stress and anxiety associated with these visits.
Unfortunately, many health care providers may be unaware of the prevalence of autism in adults and lack training in working with these patients. Some are now working to establish training opportunities for medical staff, and studying the transition from pediatric to adult health care. They hope to identify strategies that would promote better medical care for autistic adults. Read more about it here. (https://spectrumnews.org/news/primary-care-doctors-unprepared-to-help-adults-with-autism/ )
Shannon des Roches Rosa posted on her blog, Thinking Person’s Guide to Autism, an article called “What ERs and Hospitals Need to Know about Autism.” (http://www.thinkingautismguide.com/2017/08/) This very practical piece details a number of best practices for communicating with autistic patients. Here are just a few of the tips included in the article:
- Speak directly to the autistic person, even if they have a helper or family member with them.
- Do not ask, ‘How are you?’ This is an absurd question, because if someone is in the hospital it is because they are not well. Instead, ask concrete questions, such as, ‘What hurts?’ or ‘Why did you come to the ER instead of waiting for your PCP/the clinic to open?’ or ‘Are you having trouble breathing?’ or ‘Do you feel like you are going to throw up?’
- Try not to use metaphors when talking. Be very literal, and expect the autistic person to be equally literal. (Plenty of autistic people of all abilities are sarcastic and witty, with a dark sense of humor; this is just not likely to show up in a place like the ER because they are under so much stress.)
- Explain exactly what you are doing before you do it, and why, and what sensations they might experience.
- Do not discourage stimming as a coping mechanism, unless your autistic patient is physically hurting themselves or others
These are just a few; you’ll find plenty more when you read the entire article. (http://www.thinkingautismguide.com/2017/08/)
Have a heart, and share the message of autism and heart health with other medical professionals and ER staff. Let’s make doctor and ER visits less stressful for people on the spectrum.