What is the Rare Autism-Related Genetic Consultation Clinic?

The Rare Autism-Related Genetic Consultation Clinic is a short-term consultation service featuring providers who specialize in how certain rare genetic mutations (changes) linked to autism affect how a child functions in a variety of ways.

The team meets with children who are referred to the program and offers expert opinions and tailored treatment recommendations. Families receive a comprehensive report that they can share with their primary care doctor or other healthcare providers, school officials and others in their community. They also receive information on the latest research related to their child’s genetic change.

If you are referred to the program, your child may see:

  • Clinical psychologists
  • Speech and language pathologists
  • Providers specializing in neurodevelopmental pediatrics

Your child also has access to other specialties at Seattle Children’s as needed, including Neurology, Sleep Disorders and Gastroenterology.

What types of patients are treated at the Rare Autism-Related Genetic Consultation Clinic?

We see patients with certain genetic mutations (changes) that are associated with autism. These genetic changes include:

  • 16p11.2 deletion/duplication
  • Mutations to the following genes:
    • ADNP
    • CHD2
    • CHD8
    • DYRK1A
    • GRIN2B
    • POGZ
    • SCN2A
    • TRIP12

Children with these genetic changes may have:

  • Autism spectrum disorder
  • Gastrointestinal problems
  • Intellectual disabilities
  • Physical differences
  • Seizures
  • Sleep concernsSpeech and language disorders

What’s special about Seattle Children’s Rare Autism-Related Genetic Consultation Clinic?

Our multidisciplinary team from Seattle Children’s Autism Center has experience determining how certain rare genetic changes linked to autism affect a child’s functioning in a variety of ways.

  • We have special expertise in working with patients with these rare genetic changes linked to autism and have strong partnerships with providers from other specialties who may also meet with your child.

  • We will work with you to create treatment recommendations tailored to the needs of your child and your family. We will provide a detailed evaluation of your child and will explain the results in an easy-to-understand way. We will create a comprehensive report with our findings and treatment recommendations to help guide providers, school officials and others in your community.

Getting an Appointment and What to Expect

How can I get an appointment?

If you would like a referral to the Rare Autism-Related Genetic Consultation Clinic, talk to your primary care provider. If you have a referral, please call 206-987-8080 to schedule an appointment.

What should we bring to my child’s appointment?

If not provided already, please bring results from previous evaluations of your child. Please also bring a completed intake form to your first appointment if you received one from your provider or a member of our scheduling team.

  • Prior to your child’s visit, we will collect information about your concerns over the phone and will review your child’s records to ensure that an appointment with the team at the Rare Autism-Related Genetic Consultation Clinic is appropriate for your family. Records may include medical records, genetic testing results and your child’s Individualized Education Program (IEP).

  • To address concerns related to or resulting from a child’s genetic changes, our team will set up 3 or 4 appointments, often conducted in 1 day. The appointments will involve you and your child and will include a feedback appointment where we will share our impressions and recommendations.

  • Since the clinic is a consultation service, our providers do not provide ongoing therapy or care. We may recommend that your child see other providers at Seattle Children’s or through an outside agency, like a school or local medical center.

Who’s on the team?

The Rare Autism-Related Genetic Consultation Clinic team includes:

  • Clinical psychologists who have expertise in mental health and developmental issues that affect the problem-solving skills, social abilities, emotions and/or behaviors of a child or teen.
  • Speech and language pathologists who work with children and teens who have difficulty understanding language and communicating with others in a meaningful way.
  • A nurse practitioner specializing in neurodevelopmental pediatrics who has a deep understanding of healthy brain and body development and medical conditions that often go along with a rare genetic diagnosis.

When appropriate, families may also see providers from other specialties at Seattle Children’s, such as Neurology, Sleep Disorders and Gastroenterology. Providers in the program include:

Contact Us

If you would like a referral to the Rare Autism-Related Genetic Consultation Clinic, talk to your primary care provider.

Scheduling an Appointment With the Rare Autism-Related Genetic Consultation Clinic

Paying for Care

Learn about paying for care at Seattle Children’s, including insurance coverage, billing and financial assistance.