How Doctors Can Make Appointments Better for People on the Autism Spectrum
A reader recently sent me a question about meltdowns. Mary, a healthcare professional, shared that one of her patients had experienced a meltdown while she was working with him and she wanted to know what she could have done to help.
She was worried she had somehow contributed to it.
Meltdowns often stem from overload. Meltdowns are different than temper tantrums because they are generally triggered by something — sensory, transitions or anxiety, for example — and reflect an emotional overload response.
They can appear to take place without warning (because others are not aware of the emotional build-up prior to the meltdown). They can be violent and long-lasting.
In Mary’s situation, the overload could have been from something touching her patient that made him uncomfortable, a persistent unfamiliar sound some might not pay attention to, a strong smell (maybe an antiseptic cleanser), his not knowing what to expect next in an unusual situation, difficulty in being responsive to someone he didn’t know, or some or all of those things combined at the end of a long day.
After explaining to Mary there was likely nothing she could had done to end the meltdown, other than first ask how she could help (which she did), and then quietly support both the child and parent while the meltdown lasted (which she also did), I suggested a few things she could do for her patients on the autism spectrum to help prevent meltdowns.
For example, a visit to the office before the appointment day might be helpful to instill familiarity before the date of the exam appointment.
Other suggestions included:
- Scheduling appointments for patients on the spectrum for times when there are no other people in the waiting room
- Not keeping the patient waiting, even for a short period of time — if there is paperwork to be done, have it done via mail or email before hand
- Staff being thoughtful of their sensory impact while the patient is there — being aware of the sounds they are making, their movement, the smell of food they just microwaved, wearing perfumes, etc.
- Reducing or eliminating fluorescent lighting (the flickering and hum can be aggravating) — maybe adding some incandescent or LED lamps available to be turned on when patients who need them were there
After the patient is brought into the exam room, the healthcare professional can:
- Explain the exam in detail before starting — let the patient explore the room, touch things (as appropriate) and ask questions.
- Ask the patient or parent ahead of time what comforts them (I used to have my son sit in my lap for eye exams to reassure him; at the dentist we sometimes use the lead apron for x-rays as a weighted blanket during exams). Invite them to bring comfort tools and to use them.
- Take your time — some people on the spectrum can sense impatience or being rushed, and it can add to the overload.
- Ask the patient how they are doing and if they have any questions. Don’t be dissuaded if the patient isn’t verbal — many nonverbal people on the spectrum can still communicate very clearly.
- Wait for an answer — use the 8 second rule to allow the patient a chance to engage the speech centers of the brain.
The patient may stim to help manage feelings — this is an important self-management tool. Don’t stop them from doing it.
If the stimming interferes with the exam, ask if you can trade off — a few minutes of stimming, then a few minutes of exam, then a few minutes of stimming, etc. This cooperative understanding might even reduce the need to stim.
I strongly suggest reaching out to adult patients on the autism spectrum and asking for their advice on how to make their healthcare appointments more comfortable.
Other healthcare professionals who specialize in serving patients on the autism spectrum can also be a resource to learn how they structure their practices, set up their offices and generally support their patients.
What suggestions would you make to healthcare professionals to make appointments better for people on the autism spectrum?