Brad Hood, MD, FAAP
Mary Bridge Children’s Hospital
As the prevalence of autism spectrum disorders has increased, so have waiting times for a diagnostic evaluation. It is not uncommon for wait times for a specialty evaluation in many regions of the country to be a year or longer, as is the case in Washington State, and families from rural areas often have to travel long distances for assessments. At the same time, conventional wisdom assumes that children who start intensive services at younger ages have better outcomes, so there is pressure to make a diagnosis as quickly as possible.
An important point for primary care providers to recall is that the majority of interventions that children on the autism spectrum receive do not require a diagnosis, and a vital role for these providers is to make appropriate referrals while families are waiting for a specialty evaluation. Critical interventions such as speech therapy and occupational therapy are available through early intervention and special education services, often much more quickly than through other community providers. Any child under age three with delays in communication or social skills should be referred to local early intervention services, which are available in every county in the state and required by law to produce a treatment plan within 45 days. The parents of children between the ages of 3 and 5 with developmental concerns should be directed to request a Child Find evaluation thorough their local school district, and parents of older children can request an evaluation through their current schools. School districts must complete an evaluation within 60 days and produce an educational plan within an additional 30 days. Children with more significant delays should also be referred for an evaluation by a private speech pathologist and/or occupational therapist. An audiology evaluation should also be requested for children with speech and language delays.
Early intervention and developmental preschool programs can also be an important part of the diagnostic process. Data from early intervention and educational assessments are often used as part of the diagnostic assessment to help differentiate between global developmental delay/intellectual disability and autism spectrum disorders. For example, if a child is not playing interactively with peers, a cognitive assessment can help clarify whether this is a particular deficit in social reciprocity or simply a developmental milestone that the child has not yet reached. Therapists and teachers, by virtue of spending many hours with each child, also provide key observations of a child’s social behaviors, such as how well they engage and make eye contact during therapy and how they connect with peers in the classroom.
Among many reasons for the prolonged wait times for an autism diagnostic assessment is a misunderstanding of what symptoms constitute an autism spectrum disorder. Many parents request a referral for an autism spectrum disorder evaluation because their child is exhibiting disruptive behavior or has an isolated language delay. It is important for primary care providers to remember that the hallmark of autism spectrum disorders is deficits in social communication and social interaction, and some consideration should be given to other diagnostic possibilities before a referral is made. For example, for a child who displays disruptive behavior but craves attention and has no communication delays, a work-up for adjustment disorder or ADHD may be the most appropriate first step. In a younger child with delayed language skills who can compensate with pointing, gesture, and body language; a speech pathology assessment and hearing evaluation may be more pertinent than an evaluation for autism. Keeping children who are likely to have a diagnosis other than autism spectrum disorder off of the waiting lists will shorten wait times for children who are on the spectrum and help them get into critical services more expediently, and children correctly identified with other diagnoses can more quickly be referred to suitable interventions such as behavioral counseling or speech therapy.
Autism spectrum disorder should be suspected in children with significant social deficits such as poor eye contact, lack of pointing, difficulty interacting with peers in a developmentally appropriate fashion, and limitations in emotional responsiveness. It should also be suspected in children with communication delays, particularly those with regression in language skills, repetitive/scripted speech, and deficits in nonverbal communication such as gesture and facial expression. Repetitive behaviors such as hand flapping when excited or distressed, lining up or arranging toys or other objects obsessively, or an intense insistence on routines should also raise the level of suspicion. Screening tests such as the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) (16-30 months) are useful screening tools. The follow-up portion of the M-CHAT-R/F is recommended to increase the specificity of the screen, especially for children with mid-range positive scores. Referring providers also play a key role in setting realistic parental expectations for the diagnostic outcome of an autism evaluation. Parents’ disappointment in a diagnosis other than autism spectrum disorder can be mitigated by underscoring that connecting children with appropriate services to optimize outcomes, not a specific diagnosis, is the primary goal.
Note re COVID-19: A lot of providers are doing virtual visits right now, and it can be pretty tough to make a diagnosis of autism in that format. A big part of the evaluation is direct observation of social behaviors, which is challenging over video. I have still been seeing new patients and in a lot of cases I have to tell them that I suspect autism, but a final diagnosis will have to wait until I can meet with them in person.