Autism Spectrum Disorder: Information and Resources for Families

A Brief Overview

  • A short YouTube video by Osmosis.org provides an overview of Autism Spectrum Disorder (ASD).
  • A medical diagnosis of autism is not required for school-based evaluations or interventions. Read on for more information.
  • Families concerned about a child’s development can call the state’s Family Health Hotline at 1-800-322-2588. This toll-free number offers help in English, Spanish and other languages.
  • To encourage early screening for ASD, the Centers for Disease Control and Prevention (CDC) provides a 2-page tracking chart of developmental markers for children Birth-4.
  • The University of Washington Autism Center provides a collection of resources in categories that include online tools, early recognition, service organizations, and neurodiversity.
  • Information about early screening recommendations and state-specific guidance is available from the Washington Department of Health (DOH).
  • Help navigating medical systems is available from PAVE’s Family to Family Health Information Center. Fill out a Helpline Request for direct support or visit the Family Voices of Washington website for further information and resources.

Full Article

Parents of children with autism have many different experiences when watching for their baby’s first smile, their toddler’s first steps, emerging language, or their child’s learning in playtime or academic areas. When developmental milestones aren’t met in typical timeframes, families may seek a diagnosis, medical interventions, and/or supports from school.

April is Autism Acceptance Month, providing an opportunity to consider challenges and celebrations for individuals who experience neurodiversity, which is a word used to capture a range of differences in the ways that humans function and experience the world.

Self-advocates in the Autistic community celebrate diversity

Much of the Autistic community rallies to honor neurodiversity, uplift the voices of self-advocates, and forward the movement of civil and social rights. “Nothing About Us Without Us” is part of the disability rights movement supported by The Autistic Self Advocacy Network (ASAN), which shares resources by autistic individuals with lived experience for people who have autism spectrum disorders. ASAN created an e-book, And Straight on Till Morning: Essays on Autism Acceptance, as part of Autism Acceptance Month 2013. The agency also provides a welcome kit for newly diagnosed individuals: Welcome to the Autistic Community!

What is Autism Spectrum Disorder (ASD)?

Autism is referred to as a “spectrum” disorder, which means that signs and symptoms vary among individuals. The Centers for Disease Control and Prevention (CDC) defines Autism Spectrum Disorder (ASD) as “a developmental disability that can cause significant social, communication and behavioral challenges.

“There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.”

A diagnosis of ASD includes several conditions that were formerly diagnosed separately. Examples include autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. A short YouTube video by Osmosis.org provides an overview of ASD.

Signs and Symptoms

People with ASD may have problems with social, emotional, and communication skills. They might repeat certain behaviors or have rigid ideas about routines. Signs of ASD begin during early childhood and typically last throughout life. The CDC recommends that families seek early intervention if there are concerns about how a child plays, learns, speaks, acts, and moves.

Here are a few examples of some ASD symptoms:

  • Not pointing at objects, such as an airplane flying overhead, or looking when someone else points
  • Avoiding eye contact
  • Trouble understanding or expressing feelings
  • Not wanting to be held or cuddled
  • Repeating or echoing words, phrases, or actions
  • Not playing “pretend”
  • Unusual reactions to the way things smell, taste, look, feel, or sound

Diagnosing ASD can be difficult since there is no specific medical test. Doctors look at the person’s behavior and development to make a diagnosis. The CDC says a diagnosis from a credible professional by age 2 is considered very reliable.

How to seek a diagnosis

Medical diagnoses in Washington are provided by Autism Centers of Excellence (COEs). Many of these centers provide access to Applied Behavioral Analysis (ABA) therapy, an intervention that is helpful for some individuals with ASD.

An Autism COE may be a health care provider, medical practice, psychology practice, or multidisciplinary assessment team that has completed a certification training authorized by the state’s Health Care Authority (HCA). Physicians, nurse practitioners, and pediatric primary care naturopaths are eligible to apply for COE training and endorsement. The Developmental Disabilities Administration (DDA) accepts diagnoses from COEs as a component of DDA services eligibility, with the exception of naturopathic providers.

The American Academy of Pediatrics recommends that all children have a developmental screening at every well-child check-up, with an autism screening at 18 months of age and again between ages 2 and 3. To encourage early screening and intervention, the CDC provides a two-page tracking chart of developmental markers for children Birth-4.  Further information about these recommendations is available from the Washington Department of Health (DOH).

CDC numbers show that 1 in 88 children have ASD. According to Washington’s DOH, about 10,000 of the state’s children have ASD. An Autism Task Force has been at work since 2005 to promote early screening and intervention. In collaboration with DOH and other agencies, the task force in July 2016 published the downloadable Autism Guidebook for Washington State.

The guidebook includes information for families, care providers, educators, medical professionals, and others. It includes an extensive Autism Lifespan Resource Directory. Diagnostic criteria and special education eligibility criteria are described, as are specifically recommended interventions.

Getting help at school

Autism is an eligibility category for a student to receive school-based services through an Individualized Education Program (IEP). The categories are defined by the federal Individuals with Disabilities Education Act (IDEA). State law further defines the categories and criteria for intervention.

The Washington Administrative Code that describes IEP eligibility (WAC 392-172A-01035) describes autism as “a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a student’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.”

Regardless of whether a student is medically diagnosed with ASD, a school district has the affirmative duty to seek out, evaluate and serve—if eligible—any child within its boundaries who has a known or suspected disability condition that may significantly impact access to learning (Child Find Mandate). Child Find applies to IDEA’s Part B IEP services for children ages 3-21 and to IDEA’s Part C early intervention services for children Birth-3.

Families concerned about a child’s development can call the state’s Family Health Hotline at 1-800-322-2588. This toll-free number offers help in English, Spanish and other languages.

Schools have specific evaluation tools to determine how the features of an autistic disorder might impact school. Evaluations can also determine eligibility based on health impairments (for example, ADHD), speech delays, learning disabilities, or emotional behavioral conditions that might co-occur with autism. See PAVE’s article about evaluation process for more information, including a list of all IDEA eligibility categories.

In short, a student is eligible for an Individualized Education Program (IEP) if the evaluation determines:

  1. The student has a disability
  2. The disability significantly impacts access to education
  3. The student requires Specially Designed Instruction (SDI) and/or Related Services

Not every student with ASD is eligible for school-based services through an IEP. Some may have “major life activity” impacts to qualify for a Section 504 Plan, which can accommodate a student within general education.

Section 504 provides anti-discrimination protections as part of the Rehabilitation Act of 1973. Keep in mind that students with IEPs have disability-related protections from IDEA and Section 504. Additional protections are part of the Americans with Disabilities Act (ADA). See PAVE’s article about disability history for additional information.

Resources related to ASD

Resources for families, teachers, and medical providers supporting individuals with autism are vast. The University of Washington Autism Center provides a manageable place to begin with a small collection of resource categories that include online tools, early recognition, organization, and neurodiversity. Within its online tools, UW maintains lists of organizations that provide advocacy, assessments, intervention services, and research/training.

Families whose children experience autism may need services beyond school. Speech, Occupational Therapy, Applied Behavioral Analysis (ABA) therapies, and other services may be available through insurance if they are determined to be medically necessary.

PAVE’s Family-to-Family Health Information Center (Family Voices of WA) provides support to families navigating various healthcare systems related to disability. Fill out a Helpline Request for direct support or visit the Family Voices of Washington website for further information and resources.

The state Health Care Authority provides information about ABA resources and how to seek approval from public insurance (Apple Health) for specific therapies. HCA also hosts a list of Contracted ABA providers in Washington State

Another place to seek help with questions related to medical and/or insurance services is the Washington Autism Alliance (WAA). WAA provides free support for families navigating insurance and medical systems and can help with DDA applications. WAA’s website requests families to join the agency by providing basic information before they navigate to request an intake. Note that while basic services are free from WAA, the agency may charge a fee based on a sliding scale if families request legal services from an attorney.

WAA is sponsoring a virtual Day Out for Autism April 24, 2021, with family-friendly Facebook Live events starting at 10 am.

Families with Disability Concerns Take Extra Care when Planning for Emergencies

A Brief Overview

  • All families prepare for emergencies, but extra planning is critical when a loved one has a disability.
  • The Family-To Family Health Information Center provides Information about COVID-19 and updates about local, regional, and statewide healthcare policies and programs.
  • Virginia Commonwealth University offers an Emergency Preparedness Tool Kit for People with Disabilities through its university center called Partnership for People with Disabilities. The downloadable, 29-page booklet includes checklists and resources.
  • The Federal Emergency Management Agency (FEMA), an agency of the United States Department of Homeland Security, also provides a downloadable brochure: Preparing Makes Sense for People with Disabilities.
  • Military families, each installation has a Comprehensive Emergency Management Plan (CEMP 10-12). Read on for links to specific military resources.
  • This article includes a variety of resources and ideas about how to be informed and organized, with a disability-specific toolkit and emergency plans that are ready to roll if something unexpected does occur.

Full Article

COVID-19 has highlighted a need for emergency planning, and Washington State families might consider additional contingencies to plan for: winter snowstorms, flooding, wildfires, volcanoes, earthquakes…. The planning can alleviate stress and create a sense of confidence that a plan is in place for everyone’s safety if something unexpected does occur.

To be fully prepared, a family may need an emergency plan and a survival kit to support to a loved one with additional needs that are specific to a disability. Following are guidelines for getting organized and ready, with each person’s individualized needs in mind.

While building an emergency plan and toolkit, families may need to consider how to include tools and strategies for providing a sense of comfort and safety for individuals with anxiety, sensory needs, or behavioral challenges. A favorite blanket, stuffed toy, or noise cancelling headphones might be part of the kit. A handheld electronic device might provide a sense of normalcy; if one is included, be sure chargers or batteries are also part of the toolkit.

Gathering the toolkit ahead of time can enhance a sense of calm and save time when quick action is needed. Family to Family Health Information Center at PAVE has a page set up with tools and links around disability and special healthcare needs.

Be informed

Some disaster scenarios include sheltering in place, and others require movement to a safe location. The Red Cross provides information on a page titled Be Informed to help determine which types of emergencies are most likely in a designated community. Some areas are more prone to forest fires, floods or earthquakes, for example. Consider whether local public systems share information or alert the public if something is happening or about to happen. Will there be a telephone alert or a broadcasted siren? Will there be an emergency broadcast to tune in? The Emergency Alert System (EAS) includes a statewide list of radio stations that broadcast emergency alerts by area.

Consider whether there are shelters nearby, or an evacuation route. The Red Cross encourages people to download the agency’s mobile app to receive local alerts that can include emergency-specific instructions in real time. The agency also provides a page dedicated to disaster safety that takes a step-by-step approach for people with disabilities. Included are guidelines for creating a personal assessment and registering with a local emergency assistance program.

You can also download the FEMA app to get weather alerts from the National Weather Service for up to five different locations.

Make a plan

Create escape routes that are accessible to everyone within the household. Choose a meet-up spot after everyone has evacuated the home, property, or neighborhood. Consider accessibility based on the entire family’s needs: For example, will someone need to arrive at the meet-up spot by wheelchair? If someone will need a helper to evacuate, designate a helper and a back-up person to provide that support.

Tell emergency contacts about the family’s plan. Consider telling neighbors or nearby friends about where medications or mobility assistance devices (crutches, wheelchairs, walkers) are stored in case help is needed to get those things. The plan includes what may happen before, during and after a disaster.

The Red Cross provides a template for a 3-step plan, to be shared and verified with everyone who might be involved or recruited to help:

  1. All household members discuss how to prepare and respond to the types of emergencies most likely to happen where they live, learn, work and play.
  2. Identify responsibilities for each member of the household and plan a way to work as a team.
  3. Practice as many elements of the plan as possible.

Military Families

Military families may have unique and specific concerns. Each installation provides support for a Comprehensive Emergency Management Plan (CEMP 10-12). Additionally, families might seek assistance from the family support office through the Exceptional Family Member Program (EFMP) or a Family Resource Specialist (Coast Guard).

Here are additional places to seek information about emergency planning for military families: