Autism Partnership of Island County APIC FAQ

FAQ

Questions are the key to learning. Each FAQ is organized in the same format:

  1. The question

  2. What? The information or the answer to the question

  3. How? What is the process of what to do with the information

  4. Who? Who are the people who are on your team, who can help figure out an answer to the question with you and your child.

1. What is a medical home or “health home”?

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

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, physicians assistant, primary care provider, or nurse practitioner is your child’s medical home.

2. What is autism?

What: Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. According to the Centers for Disease Control, autism affects an estimated 1 in 54 children in the United States today. We know that there is not one autism but many subtypes, most influenced by a combination of genetic and environmental factors. Because autism is a spectrum disorder, each person with autism has a distinct set of strengths and challenges. The ways in which people with autism learn, think and problem-solve can range from highly skilled to severely challenged. Some people with ASD may require significant support in their daily lives, while others may need less support and, in some cases, live entirely independently. Signs of autism usually appear by age 2 or 3. Some associated development delays can appear even earlier, and often, it can be diagnosed as early as 18 months. Research shows that early intervention leads to positive outcomes later in life for people with autism.

 

How: Several factors may influence the development of autism. Studies and scientific research reveal that genes (DNA) are the strongest contributor to whether or not a person is born autistic. Extreme prematurity, early brain damage, and in uterine drug exposures may also contribute.  Vaccines do not cause autism. Infections do not cause autism. Parenting styles do not cause autism. We learn more every day.

 

Who: A parent, teacher, or medical home is usually the first person to have  concerns about possible autism based on observation of verbal and nonverbal communication and very restricted, repetitive behaviors.

3. What is screening for autism?

What: A screening tool identifies a child who is at risk for a diagnosis of autism. A positive screening does not mean your child is autistic. It means that specialists need to gather more information to understand your child’s strengths and challenges. Examples of developmental screening tools: MCHAT (Modified Checklist for Autism in Toddlers), ASQ (Ages and Stages Questionnaire), CAST (Childhood Autism Spectrum Test). Also, an autistic child may have normal screening scores using these tools and actually be autistic, which is also why a complete evaluation based solely on parental, teacher, or medical provider concern can be so important.

 

How: Typically, your child’s medical home will administer a screening tool at regular intervals of your child’s well or preventive care at a doctor appointment. Sometimes an early intervention specialist or school teacher or educator may use the tool, as well. These tools can be used any time there is a concern and repeated over time.

 

Who: Parent, nurse practitioner, physicians assistant, doctor, teacher, therapist, resource coordinator,  mental health specialist.

4. How is autism diagnosed?

What: If the screening tool identifies an area 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, child psychologist, speech-language pathologist, occupational therapist, or other specialist. Getting input from a team of professionals is usually best but can be a complicated process.In order to complete evaluations for children in Island County, local providers have developed a single-entry system. This allows parents/guardians access to all parts of a developmental evaluation without having to contact multiple providers. The goal is also to improve the management of referrals and reduce waiting times.

How: During a formal evaluation, the psychologist may observe the child, give the child a structured test, ask the parents or caregivers questions, and ask them to fill out questionnaires. He/she may also ask for permission to contact other local providers that have had contact with the child (i.e, pediatrician, counselor, speech-language pathologist, occupational therapist or teacher) so that a well-rounded view can be obtained of how the child is able to interact 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 family will be invited to a conference to discuss the child’s developmental levels and specific results and recommendations. The results of this formal evaluation determines whether a child needs special treatments or early intervention services or both.

 

Who: In Island County, any therapist, school teacher, educator, or parent with concerns or a positive screening that suggests a child may have autism spectrum disorder, should refer the child to their medical home.  Your child’s medical home will then refer them for a formal developmental evaluation. The referral is sent by your child’s medical home directly to the Autism Pilot Program, currently overseen by Julie Davies, PhD of Connections Psychology. 

5. What approaches are best to help children who are autistic?

What: A diagnosis of autism does not make ABA the #1 or only kind of therapy to help meet your child’s special needs.  ABA is applied behavioral analysis.  ABA providers on Whidbey Island are especially limited because most do not take Apple Health plans.  However, a combination of other therapies can still be very beneficial for children and families.  Examples include: OT (occupational therapy), speech therapy with an emphasis on pro-social communication, counseling/play therapy.  Parenting support and parenting skill-building are also very important, as well. The earlier the intervention, the sooner new skill sets can be learned and used by your child.  

 

How: During the process for making a diagnosis, your child’s medical home or school may refer your child for OT and/or Speech Therapy and/or play or Cognitive Behavioral Therapy.  These kinds of therapies are critically important to your child’s continued development of meaningful skills. Parenting skills and parenting support are also very important.  After your child has received a diagnosis of autism, the most important thing to focus on is working closely with your child’s medical home ot maximize resources that are available to you and your child. Your child’s medical home may refer him or her for ABA therapy because they are now eligible for this kind of therapy. It can be very challenging to access ABA therapy, spending on your child’s health insurance, and it is certainly not the only resource that can help your child.

 

Who: Who can help you make the best of available resources? Your child’s medical home referrals coordinator and/or care manager, P2P (Parent-to-Parent), your child’s early intervention team or your child’s school, your insurance company’s care coordinator/navigator.

6. What are the next steps to take after a child is diagnosed with autism spectrum disorder?

What: After a diagnosis is made, the next steps can feel overwhelming, and difficult to prioritize. At the very minimum, use this checklist:

  • Determine eligibility developmental disability support services and SSI (supplemental security income).  

 

Developmental Disabilities Administration (DDA) www.dshs.wa.gov.ddd

 

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


"Understanding Developmental Disability Administration (DDA)” video by Seattle Children’s Hospital: https://youtu.be/Aku2xTqUvbM

  • Make sure genetic testing has been completed for your child.

 

  • Make sure comprehensive vision evaluation has been completed.

 

  • Make sure comprehensive hearing evaluation has been completed.

How: Lean on your medical home and our Parent-to-Parent program to help you navigate these steps.

 

Who: Eligibility for DDA and SSI

 

Island County Developmental Disabilities, Mike Etzell 

(360) 678-7883

Genetics, vision, hearing

Your child’s medical home

Future FAQs:

  • What happens in school?

  • Why do so many children with autism also have mood, anxiety, and/or behavior problems?

  • How do I keep my child on the spectrum safe?

  • How does autism affect sleep?

  • What are other common challenges for children who are autistic?

What: Autism is often accompanied by sensory sensitivities and medical issues such as gastrointestinal (GI) disorders, seizures or sleep disorders, as well as mental health challenges such as anxiety, depression and attention issues.

  • How do I find appropriate daycare/childcare for my child?

  • What happens when my child turns 18 years-old and becomes an adult?

  • What kind of support is there for parents and family?

 

What:  Support is essential and the mental health of parents and siblings is essential. What is good for parents is good for their children.

  • How can I advocate for system changes to improve life for my child?