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Bright Futures

Articles and Updates from Phoenix Children's

April 27, 2021, Ruggiero, Mark S., MD ,
Next Steps After a Child is Diagnosed with Autism Spectrum Disorder
Next Steps After a Child is Diagnosed with Autism Spectrum Disorder

When parents/guardians are told their child has Autism Spectrum Disorder (ASD), they must first understand what that means in terms of how behavioral, emotional and cognitive features and how those symptoms and behaviors may change as their child matures.

Parents then embark on a daunting journey requiring them to learn how to navigate a very complicated administrative and political system to advocate for their child. As if hearing their child has autism isn’t difficult enough, they then find themselves on a course fraught with challenges and obstacles requiring tenacity and expertise. Our system of available resources for children with autism is more complex than treatment of medical illnesses for several reasons, which often leaves the parent/advocate at a loss while trying to secure appropriate and timely services for their child.

There are a few reasons for the complicated landscape. The first is, there are multiple agencies including, but not limited to, school districts, state agencies for children with disabilities, early intervention, non-profit organizations for children with autism and/or special needs and state and private insurance plans.

At Barrow Neurological Institute at Phoenix Children’s, a primary goal of our autism program is to provide better case management to help the parent/advocate to learn the system and request appropriate services, as well as to provide families with resources for emotional and psychological support.

Here’s a practical primer for parents:

  1. In order to initiate support services and intervention, you will need documentation of test scores and the doctor’s diagnosis. Bring copies of any relevant paperwork to all providers and appointments.
  2. Review the specific rules for each agency involved in the determination of resources for your child: AZEIP, school district, Division of Developmental Disabilities, Arizona Long Term Care System and medical insurance.
  3. Keep records of documents from all these agencies, including copies of the most recent IEP and formal evaluation from the school district (the evaluation is often a different document) and send copies or bring them to your doctor visits.

Community organizations that can help families who have a child diagnosed with ASD:

    • Raising Special Kids provides:
      • Individual consultations
      • Parent-to-parent support (may be limited due to COVID)
      • Events and training – online classes to help increase advocacy skills and improve your ability to work with professionals on your child’s educational and medical needs.
    • Branching Out Family Services provides:
      • Counseling (focuses on both emotional support and education)
        • Educational counseling sessions to help you understand your child’s diagnosis, establish an intervention strategy, and learn about all the medical, educational and administrative you will need to navigate.
        • Advocacy services
      • A wide variety of direct care services for families who qualify for Division of Developmental Disabilities (DDD) services.
      • Coaching for parents, children and/or the entire family to cultivate new skills and confidence.
      • Community involvement opportunities such as camps, retreats and other outreach events to get the families involved and connected.
    • Autism Society of Greater Phoenix provides:
      • Classes on how to navigate the system
      • Support groups
      • Online support
    • Family Involvement Center provides:
      • Guidance for parents and family members navigating systems such as schools, the Department of Child Safety, Juvenile Justice, the Division of Developmental Disabilities, behavioral and physical health care, foster care, adoption, and more
    • Autism Speaks is a great resource as they can provide coordinated support and “tool kits” to help guide families.

Most of these organizations have Spanish websites and/or Spanish speaking employees.

In summary, remember that you are the “team leader” for your child’s treatment team of providers. Now with the use of technology such as ZOOM, we can have meetings with all or various member of that team to better communicate, therefore, best treat you child.

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