By Kaelynn Partlow
It’s estimated that 75% of people on the autism spectrum have a comorbid physical or psychiatric condition. These conditions can appear at any point in the individual’s lifetime. Sometimes comorbid conditions can affect how well certain autism-related treatments and therapies work. It is important to identify those conditions, and treat them accordingly. This often means having to go to more doctors appointments than the average person. That said, a surprising number of physicians are unprepared and undertrained when it comes to treating patients on the spectrum.
Many doctors still do not understand just how many people are affected, and how variable the presentation of symptoms are from person to person. It’s important that doctors have an understanding of autism considering just how pervasive it is, in order to treat their patients effectively. Autistic people frequently have abnormally high or low pain thresholds, which can make describing and identifying pain symptoms difficult. Sensory aversions can make receiving, and cooperating with treatments or tests nearly impossible for some. Deficiencies in language processing often make instructions and explanations hard to comprehend, especially in a heightened state of stress or anxiety. These difficulties can further complicate doctor’s appointments for the person affected, their loved ones and the medical staff.
In an effort to not only ease the anxiety of the patient, but to also ensure the appointment goes as smoothly as possible here are some best practices :
1. Ask questions in a way that is clear and easy to understand, eliminating the use of extra words and questions that branch off the original one.
For example, instead of “tell me about how you’re sleeping – do you wake up a lot? is it difficult to stay asleep? do you use the bathroom in the night?” You might try something more open ended and concise. “Do you awaken for any reason in the middle of the night?” After they respond, if you need more clarification, ask a different question. This is to ensure you’re able to get the most accurate responses.
2. Offer the patient choices whenever possible.
Often anxiety stems from a feeling of loss of control. Choices gives the feeling of control back, which makes it important that they be offered. Sometimes medical tests and procedures can be scary and many of them aren’t optional. If you’ve swallowed a nonfood item, and need surgery to remove it in order to be okay that is not optional. However, choices can still be provided. Even if they seem small or insignificant, doesn’t mean they shouldn’t be offered, to give the person a feeling of control over their own care.
Here are a few examples of choices that can be provided in a medical setting: “We have to do a blood draw. Would you like to sit on the bed or the chair?” “Do you want the nurse to hold your hand?” “Do you want your medication with juice or water?”
Giving choices can ease the anxiety of a patient. Even if they may be unreceptive at least there was an option. It feels pretty bad to know things are happening to you and around you that you have no control over, especially if you have difficulty describing your feelings or asking questions.
3. Ask the patients questions directly (not friends, family or caretakers)
For adolescent or adult patients who are able to communicate, it is best to avoid asking questions about the person to someone else in their presence when possible. If a patient is able to answer the question, or give input, by all means, they should be allowed to do so, especially if they’re an adult!
Often, friends, family or caretakers will accompany the autistic patient to their appointments for extra support. It’s rude to default to the other person for information or approval if the patient is right there and are able to make their own decisions.
4. Make sure the patient understands what your are conveying
Lastly, when describing a condition, treatment, procedure, or concept, check for comprehension. Explain it like you otherwise would to another patient, but verify that the person understands what you’ve just said to them. Use a neutral tone and avoid sounding condescending.
5. Empathetic listening is important
In conclusion, remember to always have empathy, and be as understanding as possible. Even if the person is not behaving “typically”, doesn’t mean they don’t still deserve a high standard of care, to be involved in their own treatment and to be treated with respect.
My name is Kaelynn Partlow. I live in Greenville, SC and I am 22 years old. I work full time at a fabulous nonprofit organization teaching kids on the autism spectrum. I love my job and my family! I am also passionate about dog training, and work with service dogs in my free time.
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Thanks for organizing and bringing this insightful material to us Kaelynn.
As children, we often have difficulty describing and communicating our medical problems. This situation is aggravated by insensitive or untrained physicians, that fail to earn the child’s trust, by not directly eliciting and including the child’s input in the diagnostic process.
Trust in the medical world is just as important to a 4 year old as it is to 40 year old, and a child that is intimately consulted, and who sees her input being valued by those in attendance, will learn to trust her healers. She will no longer feel like a passive patient that undergoes various clinical procedures. I believe, once an atmosphere of solid trust is established, there’s a good chance she will become a willing and active participant, more ready to take increasing ownership of the healing process.
Thank you ever so much for this great article!
There is some incredibly useful information here.
Keep up the the great work 🙂
As an autistic adult I would like to say that open ended questions make me shut down. I don’t however see the question “do you wake up for any reason at night?” Open ended. It’s a yes or no question that can have a follow up question. A question like “how is your sleep?” however would be open ended and I would start to panic and not be able to answer.
A also stop being able to handle making choices when I’m stressed and each one of those trivial questions would stress me out more and more. I would be craving someone to just tell me what to do without asking me to make a million little choices.
I know everyone is different but this just shows that you also need to read the person you are working with and change your approach if they are getting more stressed.