A guide to tailoring care for patients with autism (including 9 simple tips)

Accessibility adaptations like online booking and virtual consultations can reduce care avoidance for patients with autism according to research published in the Canadian Medical Association Journal (CMAJ).The authors outline strategies for healthcare providers who are treating patients with autism. Healthcare delivery should be adapted in light of autism-related sensory profiles because autistic sensory features can affect stress responses, communication and treatment experiences. The authors recommend adapting environments, which may include reducing bright lighting, providing quieter spaces and avoiding strong fragrances. Notably, self-reported pain may not align with underlying physiology due sensory hyporeactivity and social-communication masking. In this patient population, pain is better assessed using multiple measures.Clinicians should adjust their assumptions about body language and consider offering a support person or alternative ways to communicate. The goal is to make healthcare encounters as predictable, clear and unrushed as possible.Dr. Neelkamal Soares, a developmental-behavioural pediatrician and adjunct clinical professor of pediatrics at the University of Michigan, said there are many evidence-based interventions to help people with autism, but they have to be individualized based on their specific needs. Assess the families' goals and what resources are available to them. “Some examples are behavioural interventions such as variations on Applied Behaviour Analysis techniques to improve functional skills and reduce challenging behaviours, communication interventions for those with communication deficits, cognitive-behavioural therapies for those with anxiety, among others. A qualified clinician, working with the family and networking with other specialists can help develop such an individualized plan,” Dr. Soares told the Medical Post.Stay informed, he urged, about the scientific evidence on treatments available for patients with autism. Always keep the person with autism and their family at the centre of the discussion and plans. “Don't go it alone, partner with other specialists and clinicians with each person working to the best of their skill-set. Do not assume that one type of treatment or one plan works for all persons with autism. When you've met one person with autism, you've met one person with autism,” said Dr. Soares. “Do not accept hype or myth or rumour around autism, its causes or treatments. Look to the scientific literature and trusted professional sources for information.”Mackenzie Bougoure, a PhD candidate at the University of Western Australia, with a research focus on understanding the experience of autistic burnout, suggests consulting autistic individuals about language preferences as this may vary for each individual. "In autism research, it is generally accepted to use identity-first language, such as autistic person. Many autistic people prefer this because they see autism as a core part of who they are, not something separate or negative," Bougoure told the Medical Post. Experts in the field say healthcare providers have little scientific evidence supporting clinical practices. “I'm not aware of much formal research on what the best way is to make autistic people comfortable in clinical settings. However, asking autistic advocates about this issue is a great first step for healthcare professionals hoping to get a better understanding. Autistic advocates can provide guidance on some of the best ways to make autistic patients comfortable in a health care setting,” said Zoe Gross, director of Advocacy at Advocacy at Autistic Self Advocacy Network (ASAN) in Washington, D.C.Gross has a list of a few basic tips for all healthcare professionals:Many autistic people need to know in advance what is going to happen in order to feel comfortable in a clinical setting. It helps to give autistic people a preview of how the visit will go and what will happen in what order. Describe in detail each step of any test or procedure the autistic person will be going through. Always ask before touching an autistic person and describe what is required and then get their consent before starting to touch. For example, "I need to listen to your heart with this stethoscope. I will touch it to your chest for about 10 seconds. It will feel cold. Can I do that now?" or "I need to take your blood pressure. I will put this cuff on your upper arm. You will feel it get tighter for about a minute, and then it will get loose again. The machine will beep a few times. Is it okay for me to start?"Some autistic people take longer to communicate. Speak slowly and be patient, leaving the patient extra time to respond to questions.Many autistic people will bring a support person to a medical appointment. Unless the autistic person asks you to communicate directly with the support person instead of them, always speak directly to the autistic person even if they need the support person's help to communicate back to you.Many autistic people are very sensitive to sensory input. Try to get your autistic patient a room without sensory inputs that may be distressing, such as loud beeping or flickering lights.Many autistic people perceive internal sensations differently, or have trouble perceiving them. It may be difficult to answer questions like, "Where does it hurt?" "How fatigued are you on a scale from 1-10?" "Is the pain sharp or dull?" etc. Be prepared to partner with the patient in problem-solving when they can't answer these questions, for example by ordering additional objective tests that can answer questions you would normally answer by asking for a self-report of symptoms.Your autistic patient may have trouble remembering what you told them or following instructions that you give during a healthcare visit. Give a written visit summary with clear, plain-language instructions breaking down any next steps they must take.Your autistic patient may not be able to follow all of your instructions. Be as flexible as you can, offer alternatives where possible, and problem-solve with the individual to reach the best solution that is workable.

A guide to tailoring care for patients with autism (including 9 simple tips)

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