How to Help Families Get an Evaluation for Autism Sooner

Families of young children needing an evaluation for autism are currently facing wait times at Seattle Children’s of just over one year. For children ages 5 and older, the wait time for an evaluation is more than three years.

“Seattle Children’s is an excellent place to get an evaluation for autism but it’s not the only place and not the quickest,” says Jennifer Mannheim, ARNP, Autism Center diagnostic lead. “We want families and their primary care providers to know their options to be seen sooner if possible.”

When to refer to Seattle Children’s versus a community provider

For many children, evaluation by a community provider is an excellent option, particularly if their primary care provider (PCP) is moderately or highly confident that they meet criteria for autism. Research shows community providers excel at “ruling in” autism; if they think a child has autism, they are usually correct. Community providers typically are able to complete an autism evaluation of younger children with developmental concerns much sooner than Seattle Children’s.

If a PCP is less confident that their patient meets the criteria for autism, we recommend referring them to a center with a multidisciplinary team such as Seattle Children’s or University of Washington, where providers have expertise in evaluating more complex developmental concerns. This includes children who may have ADHD, multiple mental health diagnoses and/or psychosocial stressors.

Community options

Community providers are listed on the Seattle Children’s website on the Autism Center’s How to Get Services page in the document, “Autism Evaluation Providers in the Northwest” (also available in Spanish). Children on a Medicaid or Managed Care Organization plan must receive their evaluation from an Autism Center of Excellence (COE) to receive specialized therapies such as applied behavioral analysis (ABA) or to qualify for programs such as Developmental Disabilities Administration (DDA); COE providers are included in the above document and also compiled separately in a list of autism COEs by county.

These lists are current as of June and September 2023, respectively. We do our best to keep this information up to date, but if you find any listings to be inaccurate, please contact us to let us know at autismresources@seattlechildrens.org.

Many birth to 3 centers, also called Early Support For Infants and Toddlers (ESIT) programs, will complete comprehensive autism evaluations when there is a concern for autism. So if there is concern for autism in a child under the age of 3 years, the fastest option for evaluation and treatment may be your local birth to 3.

Research options

Seattle Children’s Research Institute and the University of Washington Autism Center (UWAC) both offer families the opportunity to participate in research that might include an evaluation for autism.  Families can learn more by calling or visiting their websites:

Autism Research at Seattle Children’s
seattlechildrens.org/clinics/autism-center/research-and-clinical-trials
206-987-7917

University of Washington Research
depts.washington.edu/uwautism/research-projects
877-408-8922

Resources available while families wait for an evaluation appointment

It can be helpful to reassure parents that services may be available to their child even without an autism diagnosis, such as:

• Birth to 3 programs
• Developmental preschools
• Speech and occupational therapy services in the community

Providers can share our family handout: What to Do While Waiting for an Autism Center Appointment (PE1863; seattlechildrens.org).

We encourage PCPs to use supportive language, letting families know that starting services sooner will increase their child’s opportunity for progress, and avoid using language that suggests a window is closing, which can create a sense of failure or panic in parents.

Speech therapy while waiting for an autism evaluation

Children with speech and language delays can seek services in their community. Each family should explore their child’s eligibility for free speech and language therapy through ESIT and their local school district. They can also inquire with their insurance company to see if speech therapy is a benefit covered under their plan. If so, they can request a referral to a community speech therapist separate from their referral for an autism evaluation.

Seattle Children’s Speech and Language services offer primarily diagnostic evaluations and consultations related to speech and language concerns. There is limited capacity for short-term therapy at Seattle Children’s South Clinic in Federal Way and North Clinic in Everett. If a child is seen for an evaluation by our speech-language pathologists (SLPs), recommendations often include ongoing speech and language therapy at a clinic in the community. If our SLPs refer the family to a community provider for treatment, the community provider may opt to start over with their own assessment. This repeat evaluation could be a hardship to families who have a limited number of speech therapy visits allowed by their insurance.

A speech and language assessment can lead to appropriate services for the child and can offer helpful insights to the provider who subsequently conducts the autism evaluation.

Reducing wait times at Seattle Children’s

To improve access to autism evaluations at Seattle Children’s and elsewhere, we are:

• Adding staff: With support from donors, Seattle Children’s recently hired four additional psychologists who are dedicating half their time (equivalent to two full-time employees) to performing autism evaluations for children ages 5 and older.
• Building community capacity: The University of Washington and Seattle Children’s are helping train more providers to evaluate and manage children with autism through the ECHO Autism Washington program.

The Autism Center continues to assess and improve care options for children diagnosed with autism on many fronts, both within Seattle Children’s and in the community.

In case you missed it…

Families of children with an autism diagnosis are now recommended to take Seattle Children’s ATLAS class as their first step in accessing the Autism Center’s other classes, groups and services. For more information, see: Autism Center Introduces the New ATLAS Class to Connect Kids to Care More Quickly.