“Autism is one word attempting to describe millions of different stories.” – Stuart Duncan
Autism. When you hear this word what do you think? Through our training, we have probably jump to thinking of a patient with social interaction impairments, delayed language developments, and heightened sensitivity to sound and smell. After all training for boards exams have instilled those “buzz word” key elements to look for in a question stem. Now think about all the patients you have seen with the diagnosis of Autism… do all of those things fit? Were all of their stories the same? I would guess to venture a lot of you would say no. But think back to when you met these patients for the first time. When you heard that they had autism, what did you think you were walking into? Was it a patient who would display the things I mentioned above?
During my Community Rotation, I had the opportunity to participate in some visits at the CYACC (Center for Youth & Adults with Conditions of Childhood) clinic. The CYACC clinic’s purpose is to help families understand transitional care from Pediatrics to adult care for those with special health care needs. They do wonderful work and patients are seen by a multidisciplinary team including nursing, social work, and a physician to help families with transitions to adult care. They talk about insurance differences, activities or social groups, and they offer tons of other support that I could spend all day talking about. But the key is that is all patient centered. They go back and hear the journey of this patient and their families, and then at the end of the visit provide them with individualized plans for suggestions. On the day I went we had two patients on the afternoon schedule both with diagnosis of autism. In the first visit the patient had all the signs and symptoms that you would typically see in person with autism. They had sensitive hearing, they had impaired social interactions, etc. Their story was their own, and the family had concerns about helping their child become more social and asked for guidance on particular matters. In the next visit, the patient did not present with the “typical” signs. In fact, if I had not known that this had autism, I wouldn’t have noticed it until well into the interview. This families story was completely different, and their needs were very different. At the end of the day looking at the assessment and plans for both patient’s there were very few things that were similar. I couldn’t help but notice what a degree of difference there was. It was a great reminder to me that people with autism are on a spectrum, and one is not necessarily like another. It was a great reminder to me that in the pressure to complete so many office visits in a short amount of time, it can be all too easy to think of all diagnosis the same way, with the same plan for each patient. It was a great reminder to me that sometimes the best way to learn how to provide the best care to meet these patients needs is to simply ask them, because no two stories are the same.