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

author's child at doctor 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?

Follow this journey on Autism Mom.

The Mighty is asking the following: What’s the best thing a medical professional has said to you related to your (or a loved one’s) disability, disease or mental illness?  Check out our Submit a Story page for more about our submission guidelines.

TOPICS
, , , , Contributor list
JOIN THE CONVERSATION

Related to Autism Spectrum Disorder

jenga game

The Game I Use to Explain the Challenges of My Son With Autism to Those Who Don't 'Get It'

I was talking to some friends the other night, and we were discussing my son and his autism. They were trying to figure out why Soren knew certain things one day but not the next, or why he would progress in certain areas and fall behind in other areas. I explained in the technical terms, [...]
Erin with her book, 'I Have Asperger's'

Why I Write as a Person on the Autism Spectrum

Growing up, I was always writing little poems or stories and even some songs. They weren’t always the best, but I enjoyed it. Writing was fun. It continued to be a creative outlet until one year in high school. I was still undiagnosed as on the autism spectrum, but the teachers and staff were aware [...]
Kathy Hooven’s son, Ryan.

When My Son With Autism Said, ‘I’m Not Very Good With Words’

My son Ryan is trying. He is trying so hard. I swear I can almost see him searching through the files in his brain. These files of his seem to be scattered in no particular order, which makes retrieving the information within the files an arduous task. More often than not, he gives up, but [...]
Cathy B. with her son, Dominic.

3 Words That Helped Me When I Thought I Let My Son With Autism Down

I got lost heading back home from a meeting recently. It would have been fine, except I had to be home to meet my son Dominic when the school bus dropped him off. I thought about calling my husband, the bus company or one of my friends to help me, but in my mind I [...]