Navigating systems for families newly diagnosed with ASD

Small group of adolescents planting tree seedlings in the dirt

After receiving a new autism spectrum disorder (ASD) diagnosis, families may have a lot of questions about how to best navigate the systems. We put together a list of resources – including community supports, family support, state and federal agencies, educational support and social groups and clubs – for these families.


Community Supports

Call ASO at 503-636-1676 or email info@autismsocietyoregon.org

The Autism Society of Oregon (ASO) is a great first stop for families looking for information on area resources or just someone to talk to. As the largest statewide ASD-focused nonprofit, ASO is a free resource for families who have children with autism, as well as for autistic adults looking for more information about the autistic community. When you call ASO, you will be connected with someone who has first-hand, lived experience with autism.  They maintain a rich database of supports on almost every topic and area of need, and they also host workshops, webinars, support groups and social events that connect families experiencing autism.

Call the Oregon Family to Family Health Information Center at 1-855-323-6744 or email contact@oregonfamilytofamily.org

The Oregon Family to Family Health Information Center provides information to families navigating the complex world of special health care needs, including how to understand insurance systems, access financial assistance and identify emotional supports. It is staffed by family members of people experiencing a range of disability and developmental differences and Spanish language speakers are available.

Call Swindells Resource Center at 503-215-2429 or email swindells@providence.org

Swindells Resource Center, located at Providence Health & Services, provides information about a wide variety of developmental differences. They have parent volunteers to answer questions, a lending library and community presentations.


Family Support

Parenting is difficult; raising a child with developmental differences can be particularly challenging. Parents should ensure that they are taking care of their own needs while they strive to meet their child’s needs. Ensuring that you have appropriate supports – be it through family and friends, counseling services, respite services or support groups – can help.

  • Counseling services are available through county mental health agencies, and other providers may be covered by insurance (contact your insurer for details).
  • Support groups can also be important to some families. Some local support groups can be found at:


State and Federal Agencies

The Office of Developmental Disabilities Services (ODDS) offers supports to children and families, as well as adults with intellectual and developmental disabilities. After an individual qualifies for support, a plan is established with each child and their family. This plan identifies provided supports based on their health and safety needs, interests, choices and goals. Each plan uses as a person-centered planning process to determine which supports are available, and families can choose the services that best support their needs​. ODDS has a list of agencies by county.

Supplemental Security Income (SSI) is a federal program that provides income and medical insurance through Medicaid to eligible children who are disabled or chronically ill and whose families have little or no income or financial resources. Your child may qualify for SSI payments if your family is eligible for Medicaid. Applying for SSI can be challenging and complex, but it can be done. For more information, contact your county Mental Health and Developmental Disabilities Services Office.

Educational Supports

Children up to 5 years old:
Supports come from your county’s Early Intervention (EI) or Early Childhood Special Education (ECSE) programs. These programs are open to all of Oregon’s children from birth through preschool. Contact your county for assessment.

The Head Start program is for children ages 3-5. The Early Head Start program is for pregnant parents, infants and toddlers. These programs help get children who live in low-income families get ready for school. Services for education, health and nutrition are available. There are also services for migrant and seasonal farm worker families.

Children ages 5 to 18:
Once your child begins school, they may be able to access special education supports from their school district. Contact your child’s school to start the process.

If you need support or assistance getting school-based services, you can contact:

For more information about school-based supports:


For Kids, Tweens and Teens

There are lots of places where kids with autism and other social communication differences can connect with other kids to share interests, have fun, and make friends.

Summer Camps:

Social Groups and Clubs:
The Autism Society of Oregon sponsors several groups, including:

  • The Weekly Friendship Group for Autistic Youths meets every Monday from 6 p.m. to 6:45 p.m. This is a new, online group for autistic kids (suggested ages 7-13) to meet, get to know each other, be silly, explore common interests and make friends.
  • Game Club (based in Forest Grove) meets virtually during the school year (September through May) on the first Friday of the month from 5 p.m. to 7 p.m. They also host socially distanced outdoor activities. For more information, email ForestGroveGameClub@gmail.com.
  • Parent + Teen Online Social Group is for autistic teens (ages 13-19) who need a supporter (parent or caregiver) to participate. The group meets on the third Saturday of the month from 1 p.m. to 2:30 p.m. The goal is to meet new people and make friends in a welcoming, supportive environment.

Headshot of smiling person with glasses standing outsideCynthia Green, M.S., CCC-SLP
CDRC Clinical Director
Assistant Professor, Department of Pediatrics
Institute on Development and Disability
Oregon Health & Science University

 

 

 

 

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