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.

Genetic Testing: Parents Face Many Choices

A Brief Overview

  • More than 1,000 genetic tests are available. Whether to test is voluntary, and families can consider how the testing might impact social and emotional well-being.
  • Genetic testing is available at various ages and stages through the lifespan. Read on for information about options from pre-birth through adulthood.
  • A directory from the National Society of Genetic Counselors provides a place to seek information and support.
  • The Genetic Information Nondiscrimination Act (GINA) protects individuals from genetic discrimination. The National Human Genome Research Institute, (NHGRI) provides information about GINA.

Full Article

Genetic testing can provide information about changes in chromosomes, genes, or proteins that might impact a person’s health, development, or ability to respond to certain medical treatments. Testing is available from pre-birth throughout the lifespan.

A genetic test can confirm or rule out a suspected genetic condition or determine whether someone might develop a medical condition or pass on a genetic disorder to a child. More than 1,000 genetic tests are currently in use, and more are being developed.

Testing is voluntary and personal. Families can discuss with providers whether information found through testing might help with choice-making or whether the testing might cause stress. A geneticist or genetic counselor can provide guidance about the pros and cons of the test and discuss the social and emotional aspects of testing.

According to the National Institutes of Health (NIH), the three common methods for genetic testing include:

  • Molecular tests, which look for markers that might identify small variations or mutations in the structure of a person’s cells.
  • Chromosomal tests, which analyze whole chromosomes to see if large genetic changes, such as an extra copy of a chromosome, may cause a genetic condition.
  • Biochemical tests, which analyze proteins to determine any abnormalities that might indicate a genetic disorder.

Genetic testing often involves a small blood sample or a cheek-swab that is sent to a medical lab for analysis. A medical provider or genetic counselor usually shares and interprets the results. Patients also can ask for lab results to be mailed directly to the home.

When deciding about genetic testing, families generally start with a reason to wonder if there might be a problem. A child may have a medical diagnosis, or someone else in the family may have suffered from a condition related to a genetic abnormality. Regardless of the reason, families may face choices at various ages and stages of the development. Here are a few examples of genetic tests that parents may consider:

Preimplantation Genetic Diagnosis (PGD)

PGD is provided when a mother chooses to become pregnant through a process of in-vitro fertilization, when the egg and sperm are introduced outside the woman’s body. The resulting embryo can be tested to ensure that only embryos free of genetic disorders are implanted into the woman’s womb.

Prenatal Testing

Genetic testing on the baby can be done inside the mother’s womb. Amniotic fluid or tissue is collected from the fetus. Because the tests introduce a potential for miscarriage, mothers often discuss risks and reasons for wanting the information before choosing.

Newborn Screening

The most common type of genetic testing is newborn screening. Typically, a baby’s heel is pricked within a day or two after birth. The blood sample can reveal genetic disorders that might be treatable early in life. Follow-up testing is sometimes needed for development of a care plan.

Diagnostic Testing

When a person is ill and doctors struggle to determine the cause, genetic testing can sometimes assist with diagnosis. Genetic information may impact the course of ongoing treatment.

Presymptomatic Testing

If a family member has been diagnosed with a genetic disorder, other relatives may wish to be tested to identify any risk. For example, certain genetic markers indicate a tendency toward a specific cancer or heart condition. Finding a gene that increases the chances of developing a disease may help patients make medical or lifestyle decisions.

Carrier Testing

Certain families or ethnic groups carry genetic markers for specific impairments. If both parents carry a marker, they may pass it on to their children. Knowing this through testing can inform parenting decisions.

Pharmacogenomic Testing

Genetic markers can provide information about how certain medications are metabolized. Knowing how a person might respond to medications removes some of the guesswork. Genetic testing is increasingly common for individuals with mental health diagnoses.

Research Genetic Testing

By studying how genetics impact health and development, researchers expand knowledge about what can happen and how the medical field might respond.

What are the costs?

Basic genetic testing can cost $100-$2,000. A more complex diagnosis can cost more. Whether insurance pays may depend on whether the test is being recommended by a provider. Most policies cover newborn testing.

Test results may arrive in a few weeks or take several months. Prenatal tests generally are completed more quickly. A genetic counselor or medical provider can provide more precise detail about expected costs and timing.

Some people worry that genetic testing could impact healthcare coverage. The Genetic Information Nondiscrimination Act (GINA) intends to protect individuals from genetic discrimination. The National Human Genome Research Institute, (NHGRI) provides information about this law.

According to the Institute, “Many Americans fear that participating in research or undergoing genetic testing will lead to being discriminated against based on their genetics. Such fears may dissuade patients from taking genomics-based clinical tests or volunteering to participate in the research necessary for the development of new tests, therapies, and cures. To address this, in 2008 the Genetic Information Nondiscrimination Act (GINA) was passed into law, prohibiting discrimination by employers and health insurers.”

Emotional costs of genetic testing can be complex. Finding out the results of a genetic test can cause anxiety, anger, guilt, or depression. A genetic counselor can help with decision-making. A directory from the National Society of Genetic Counselors provides a resource for finding support.