When treating autism, awareness of comorbidities, patient sensitivities is critical

In recent years, increased awareness of autism among clinicians, patients and the public has made autism — which is estimated to affect one in 68 U.S. children — a heightened priority.

In addition to providing more specialized care to manage autism, clinicians should also be aware of the various ways in which autism can affect overall health. In the primary care setting, such awareness includes the various co-occurring conditions common to patients with autism. Moreover, children with autism may have sensitivities or behavioral issues that can make doctor’s appointments more traumatic. Having a general knowledge of the common obstacles faced by children with autism, as well as specific knowledge of individual patient sensitivities, can be invaluable for ensuring a successful health care encounter and quality ongoing care. Healio Family Medicine spoke with Susan E. Levy, MD, MPH, a neurodevelopmental disabilities pediatrician and medical director of the Center for Autism Research at the Children’s Hospital of Philadelphia (CHOP), about several strategies for how clinicians can work with families to manage the overall health of children with autism.

Susan E. Levy

Question: When managing patients with autism, depending on the severity of the condition, communication can be compromised. What strategies can clinicians employ to facilitate communication with patients?
Answer: When a clinician sees a patient with autism, it is important to consider what kind of visit it is. If this is the first visit with a child with autism and his or her family, there are several questions that the clinician will need to ask. If this is an existing patient, they will already know answers to some of these questions.
Some basics they’ll need to know is the child’s age, and whether they have an established diagnosis. If the child was diagnosed by a reputable source and we know that the child absolutely has a diagnosis of autism spectrum disorder, the potential range of core symptoms, including communication and socialization as well as co-occurring conditions such as intellectual disability, can be wide. The severity of these symptoms also can vary widely.
The first issue the clinician needs to get a sense of is where is the child skill clustering? Does the child have an age-appropriate understanding of language, or is the child’s understanding of language delayed? We know that expression of language should never be greater than the understanding of language, but in some instances children with autism do have expressive language that is more advanced than their receptive language.
Clinicians can help facilitate communication by knowing where the child is functioning and working with the parents to determine the best way to communicate. The parents, through their contact with the child, the child’s school and other environments, really have the best idea how to communicate with the child with autism.

Q: Are there strategies for setting the environment for an exam that can help make it easier for the patient with autism?
A: Yes, and this relates to the previous question, in terms of sensory issues the child may have. There have been several studies published, and other recommendations made through the American Academy of Pediatrics, about how to address some of these issues.
Some of it involves figuring out how to help the child with their expectations. With some of our families, we work to develop a social story and a picture book, for example, where we might say, “Johnny, we’re going to see Dr. Susan tomorrow.” And then the book may have pictures of the waiting room and exam table, and the paper may be noisy. We try to prep them using a few different strategies.

Q: How can parents or caregivers help the clinician in working with a child with autism?
A: This is an important issue, one that is near and dear to my heart. Last year, I published a study that I conducted as part of my master’s in public health on shared decision-making between families of children with autism and pediatricians. The quick answer is: shared decision making. They need to partner with each other; they need to share information about what the issues are and what their expectations and desires are, without one person directing the other.

Q: Are there screening tools that can help determine a patient’s ability to participate in the exam that might guide clinicians on how to proceed?
A: There aren’t any “quick and dirty” screening tools that can help us to figure out how to work with children who have autism. It’s a stepwise process. Adding up all of the previous questions we’ve discussed can help the clinician understand how well the family and the child are going to be able to participate.

Q: What conditions are children with autism more susceptible to, thus requiring closer monitoring by the clinician?
A: This is something we are beginning to pay greater attention to. There have been a number of articles written on the part of Autism Speaks and the Autism Treatment Network, as well as other research we’ve done on co-occurring conditions that are more common in kids with autism.
These co-occurring conditions fall into a few different categories: medical, developmental and behavioral. The medical conditions can include seizures or epilepsy, gastrointestinal symptoms and/or problems with sleep. ADHD is a developmental/neurological condition more common in children with autism. Behavioral issues are more common, and this could include the sensory issues we discussed above, as well as aggression or obsessiveness that goes beyond the core symptoms. Diet selectivity is also more common. In older children, there is a higher prevalence of problems such as anxiety and psychiatric issues.

Q: What other tools or guides are available to help clinicians care for patients with autism?
A: I am currently chairperson of the Autism Subcommittee of the Council of Children with Disabilities of the American Academy of Pediatrics (AAP), and in conjunction with researchers and clinicians at CHOP, we’ve worked on a number of different tools and clinical reports to provide support. One example is the AAP of Pediatrics Autism Toolkit, which was revised in 2012. The toolkit provides numerous resources for treating patients with autism. In addition, there is a clinical report from 2006 on care of children with autism; it is currently in the process of being revised. HealthyChildren.org also offers resources. Finally, CHOP also offers several pathways in terms of early identification and screening of autism, and we’re actively working on more.

Q: What are your take-home messages for clinicians to consider when treating patients with autism?
A: There are three things. It’s important to remember that it’s not just the autism, but also some of the co-occurring conditions that can have an even bigger impact on quality of life. For example, sleep problems are one of the biggest problems that families tell us about. It leads to poor quality of life for families, and can make life very difficult. So, it’s important to be aware of potential co-occurring conditions, rather than focusing only on the autism.
Second, I reiterate the importance of partnering with families to determine the right place for treatment.
The third piece is to not wait until the child turns 21 years of age to begin to think about a transition plan. When treating a child with a disability, the provider should be working on developing a transition plan starting at age 14. – by Jennifer Byrne

Further reading:
American Academy of Pediatrics Autism Toolkit
Autism Speaks Home Page
Children's Hospital of Philadelphia Autism Integrated Care Program

For more information:
Susan E. Levy, MD, MPH, can be reached at 3550 Market St., Philadelphia PA 19104.
Disclosure: Levy reports no relevant financial disclosures.