What: There are different ways to think about autism. Medical providers and therapists may use the label Autism Spectrum Disorder (ASD) while other people just say “autism” or “autistic”.  No matter what label is used, individuals who are diagnosed with autism have developmental differences that affect how they experience the world around them and sometimes how they interact with others.

It’s important to know that autism has always existed and that it is not a disease or something to be “cured”, it’s just a difference in the way some people develop. We’ve gotten better at recognizing the traits of autism, but it can be hard to describe because each person is a unique individual. Just like everyone else, each autistic person has strengths and challenges, so one person with autism may seem very different than another person. Some individuals need a lot of support to learn and function in everyday life, but others may only need a little help, and others need no help at all. These differences in the expression of autism are sometimes described as a “spectrum”. Most people think of a spectrum like this:

But a newer way to think about the autism spectrum is as a color wheel, like this:

Each person’s combination of traits – or “spectrum”- is unique. One person might have a collection of traits like the wheel on the left while another person’s traits are like the wheel on the right:

Both people are autistic, but they are very different people!

To learn more about viewing autism as a color wheel, check out this comic strip explanation at The Art of Autism: https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/?fbclid=IwAR3_LxDw84UMK0seiUIKzCM6dKeoc3ttbHMobCT3f3p2ptxljey4905qq8g

The autism diagnosis is given if a child shows differences in three main areas: social interaction, speech or nonverbal communication, plus tendencies to rigid or repetitive behaviors. Autism is called a developmental difference because the person showed characteristics before they were 3 years old.  Autism might be identified in children as young as 15-18 months old, but it’s most often diagnosed at about age 4. It’s a good thing when autism is identified in early childhood because research shows early intervention makes a real difference in helping to strengthen a child’s abilities while overcoming challenges.

How: Just like other human differences, the reasons why some people show autistic traits and others don’t is complex. Scientists have been studying autism for decades and they still don’t fully understand why some people are autistic and others are not. We do know that genes often play a role, but there may be other reasons as well.  We know that autism is identified about 4 times more in boys than in girls and that it occurs in all racial, ethnic, and socioeconomic groups. We also know that vaccines do not cause autism – nor do parenting styles! We are learning more about autism all the time.

Who: Parents, teachers, or primary care providers are usually the first to notice possible traits of autism based on observation of a child’s communication style and other behaviors.

What: As you look through our autism resources navigation page, you might notice we use different words to describe people with autism. Sometimes we use ‘person first’ language and sometimes we use ‘identity affirming’ language.

How: Person first language puts the person first, before other identifying labels. For example, “person with autism, child with autism.” Person first language focuses on the central idea that defining a person by name (Jane) or role (Aunt, Sister, Friend) helps others identify with their common humanity rather than seeing them as “different”. Those who prefer person first language believe it helps others see an individual’s potential rather than their limitations. 

On the other hand, identity-affirming language places autism first, for example “autistic, autistic person, autistic child, or autistic adult.” When polled, most autistic adults believe they do not need to be separated from autism as in “child with autism.” They view autism as a fundamental aspect of who they are, not as a disorder or a disease. Autism is simply a different way of being, thinking, and learning. Many autistic adults feel using “autism” or “autistic” reduces stigmas associated with this diagnosis.

Who:  At Holly Ridge we believe that person first language and identity-affirming language have the same goal: to affirm and respect the individual. But we also recognize that language we use to describe ourselves and our loved ones is a very personal choice and not everyone agrees about which way – person first or identity-affirming first – is the best. And so, out of deep respect for all, we are intentionally incorporating both types of language; you will see that we refer both to “persons with autism” and to “autistic persons”. As we work together, we will make a good effort to ask how you would like us to refer to you and your family and we will honor whatever language you prefer.

What: A screening tool identifies a child who is more likely to receive a diagnosis of autism, but a significant score does not automatically mean your child is autistic. It means that specialists need to gather more information to understand your child’s strengths and challenges. Some names of developmental screening tools include the MCHAT (Modified Checklist for Autism in Toddlers), ASQ (Ages and Stages Questionnaire), and CAST (Childhood Autism Spectrum Test). Sometimes an autistic child may have an average screening score using these tools yet actually be autistic, which is why a complete evaluation based on parent, teacher, or medical provider concerns is also very important in diagnosing autism.

How: Typically, your child’s primary care provider will administer a screening tool at regular intervals of your child’s well care. Sometimes an early intervention specialist or educator may use a screening tool as well. These tools can be used any time there is a concern and they can be repeated over time, as your child grows and develops.

Who: Parents, nurse practitioners, physician’s assistants, doctors, teachers, psychologists, therapists, family resource coordinators, and mental health specialists may all administer screening tools.

What: If the screening tool identifies one or more areas of concern, a formal developmental evaluation may be needed. This formal evaluation is a more in-depth look at a child’s development, usually done by a specialist such as a developmental pediatrician, neurologist, pediatric nurse practitioner, or a clinical psychologist.

How: During a formal evaluation, the evaluator (doctor, nurse practitioner, or psychologist) will observe your child and ask you questions or to fill out questionnaires; they may also use structured tests to help them make an accurate diagnosis. Getting input from a team of professionals is usually best if possible, so the evaluator might ask permission to contact other providers that have worked with your child (i.e., speech-language pathologists, occupational or ABA therapists, school psychologists, counselors, or teachers). This will help the evaluator form a well-rounded view of how your child interacts and behaves with different people, in different settings. If a consultation or observation with other providers is necessary, then that will be arranged. At the end of the evaluation, the diagnosing provider will discuss what they have learned with you about your child’s developmental levels along with recommendations. The result of this formal evaluation may help your child become eligible for specialized therapies (e.g. speech-language therapy, occupational therapy, or applied behavior analysis).

Who: Any therapist, educator, or parent with concerns or a screening that suggests a child may have characteristics of autism, should refer the child to their primary care provider. Their medical provider should then refer your child for a formal developmental evaluation. For children under age 3 residing in Kitsap County, a provider or parent can refer the child to Holly Ridge Center for a complete developmental evaluation, including assessment for autism spectrum disorder  (ASD).

What:  While applied behavior analysis (ABA) therapy can be especially helpful for children on the spectrum, a diagnosis of autism does not make ABA the only kind of therapy to help your child thrive. In fact, a combination of therapies can be very beneficial for autistic children and their families. In addition to ABA, speech-language therapy with an emphasis on social-communication, occupational therapy (OT), and structured school-based programs are often important components of intervention. Parenting support and parenting skills training are also very beneficial. Most importantly, the earlier the intervention, the sooner new skills can be learned and used by your child.

To learn more about Applied Behavior Analysis (ABA) and helpful tips for finding the right ABA therapist for your child, view this free webinar by Dr. Ashley Penney of the UW Autism Center:   https://www.youtube.com/watch?v=DbzAfch8-aM

How: During the diagnostic process, your child’s primary care provider may refer your child for applied behavior analysis (ABA) therapy, occupational therapy (OT), speech-language therapy, and if your child is older when diagnosed, they may be referred to a psychologist for cognitive behavior therapy (CBT).  These interventions may all be important to your child’s continued development of meaningful skills. In addition to your child’s therapies, parenting skills, parent coaching, and parenting peer support are also very important for caregivers.

Who:  If your child is under age 3 and enrolled at Holly Ridge Center, their early intervention team of providers will assist you in accessing helpful therapies and services in Kitsap County. If your child is older than 3, Holly Ridge Center’s Autism Resources Navigator may offer limited support, your medical home referrals coordinator/care manager, your insurance company’s care coordinator/navigator, and your child’s public school district may all help you connect with autism-related resources in our community.

What:  After a diagnosis is made, the next steps can feel overwhelming, and it can be hard to know what the most important thing is to do first… we recommend you slow down and take a breath! While it is important to find the right support for your child and family, you do not have to do it all at once. Give yourself time: time to learn more about autism and autism supports, time to decide which choices seem like the best for your family, and time to move at a pace that is realistic for you. One important thing you might focus on is identifying your support team (e.g., your child’s medical providers, educators, family resource coordinators, and therapists), then lean on your team to maximize resources available to you and your child.

When you are ready, in addition to the other things you decide are important, we recommend that you include these items on your ‘to do’ list:

• Determine your child’s eligibility for developmental disability support services and SSI (supplemental security income).  
• Make sure genetic testing has been completed for your child (if this has not already been ordered by your medical provider).
• Make sure a comprehensive vision evaluation has been completed (if this was not already done by your medical provider)
• Make sure a comprehensive hearing evaluation has been completed (if this has not already been ordered by your medical provider).

How: Lean on your team to help you navigate the next steps you decide to take.

Who: Eligibility for DDA and SSI  

Developmental Disabilities Administration (DDA) https://www.dshs.wa.gov/dda

Kitsap County is in Region 3; the Kitsap field office is located at 4710 Auto Center Blvd, Bremerton, WA 98312, (360) 405-7800

DDA provides home and community-based services for children and adults with developmental disabilities, including Medicaid Personal Care, Employment, Supported Living, Therapies and Respite care. 

What: A ‘medical home’ is a home base for your child’s health care. It is a way to provide high quality, family-centered health care that best meets the needs of your child and your family. It is not a building, house, or hospital. It is a partnership between you, your family, and your child’s primary care doctor, nurse, and clinic staff. A medical home works with you and your child to make a plan to address any concerns. Together, you make sure that the medical and non-medical needs of your child are met to catch problems early and to prevent any issues from growing bigger.

How: If your child does not have a medical home and/or does not have health insurance, reach out to these resources for assistance:

Washington Health Plan Finder

(855) 923-4633

TTY (855) 627-9604

https://www.wahealthplanfinder.org/_content/Homepage.html

WAHealthPlanFinder.org is the official insurance exchange for Washington State use this site to apply for Apple Health for Kids, Medicaid, and Affordable Care Act (ACA) health plans.

Health Care Authority/Apple Health/Medicaid

Health Care Authority

http://www.hca.wa.gov

(800) 562-3022

*Many Apple Health recipients may qualify for a free cell phone with minutes/data. Call your Apple Health provider for more details.

Who: Your child’s doctor, physician’s assistant, primary care provider, or nurse practitioner is your child’s medical home.