When choosing a college major, such as nursing, one doesn’t expect to be questioned about their software coding skills during a job interview. Or when you board a plane for your destination of Los Angeles, you don’t expect to disembark in Chicago.
We place expectations for our lives based on what we want. Yet life doesn’t always participate.
This is what happens when a parent receives a diagnosis of Autism Spectrum Disorder (ASD) for their child. Life has unexpectedly given you another path that you did not choose and feels unfamiliar. You must start becoming an expert in Autism Spectrum Disorder while at the same time working through the emotions that this diagnosis can have on family life.
Since the rate of ASD has been on its upward climb since the end of the 1980s, the increase in awareness of ASD and, subsequently, services and support for ASD have also risen. There are still a lot of holes and gaps in services, particularly for adult supports. But resources have improved and will continue to do so, especially with parent advocacy, planning and commitment.
The early years (0-5 years): If you have a child that has been diagnosed at a young age, become familiar with Special Education law under the Individuals with Disability Education Act (IDEA). Depending on your child’s age, they will receive special education series via an Individual Family Service Plan (IFSP) or Individualized Education Plan (IEP). Oregon offers free workshops for families and caregivers through centers like Families and Community Together (FACT) in downtown Portland, www.factoregon.org, and the Advocates for Children that Experience Special Needs support group in Wilsonville, www.actsn.org. On the national front, the most comprehensive source of Special Education Law & Advocacy is Wrightslaw at www.wrightslaw.com. Materials, speakers, advisors and professionals are available to help aid in navigating special education rights, responsibilities and procedures.
Question and understand your pediatrician’s knowledge of ASD. If you get to a tipping point where you know more about ASD than your doctor, switch to a developmental pediatrician or another pediatrician that is familiar with the various treatment options. There are a variety of naturopathic options with demonstrated benefits for those with ASD, from biomedical interventions, gluten- and casein-free diets, B6, Magnesium and Vitamin D supplements. Several reports, summaries and scientific-based research are available online supporting alternative and complementary care.
The in-take process for obtaining services through the county’s Developmental Disability Services branches gives families a head start on early intervention. The DDS case managers can also provide information, paperwork and guidance for low income families to access SSI and the Oregon Health Plan, the Oregon Medicaid Waiver. Additionally, the Portland Metro boasts top professionals and therapists in the private sector, including speech-language pathology, occupational therapists, sensory integration therapies, Applied Behavior Analysis (ABA), auditory services and many more. Insurance can help cover expenses for some of these services, such as the recent approval by legislature to cover ABA through Kaiser Permanente insurance. Families should check their insurance coverage prior to making a therapy commitment.
School years (5 to 18 years): This is a big span of time and one where your child may be developing significantly. While continuing to hone your skills in special education advocacy, treatments based on best practices, your own emotional support and that of your family members, you’ll want to pay attention to those transition IEPs. Start talking about transition at your child’s annual IEP when they are 14 years old and familiarize yourself with the diploma options in Oregon.
Person Centered Planning training, one that facilitates the development of life plans focusing on unique interests, strengths and resources as the foundation for all aspects of planning, is helpful with graduation options and requirements. Visit the Oregon Technical Assistance Corporation (OTAC), www.otac.org, and FACT, www.factoregon.org, for upcoming workshops.
Between the ages of 17 and 18, you will work with your county Developmental Disability case manager to get paper work together for SSI, Medicaid Oregon Health Plan and determine whether you should continue being your child’s guardian at age of majority. Consulting with an attorney for a Special Needs Trust is a good idea at any age, depending on your income or the income of other family members from which your child may inherit.
Transition Years (18 to 21 years): After high school, your child may want to pursue post-secondary education (dependent on the diploma they received) or transition services through your school district. Start to look at these various options and make appointments to visit all facilities with your child. Request Brokerage Services through your county case manager and start working with Vocational Rehabilitation for job coaching, support and placement. Continue to look for social groups for your child and embrace that social challenges and support may continue throughout life.
Adult Years (after 21 years): Many parents or caregivers of a person with ASD continue to be involved after they become adults. Fine-tuning the independent living skills for independent (or semi-independent) living, employment, social development and recreation are a life’s work. Review living documents like wills, special needs trusts, guardianship/trustee assignments and estate planning documents to ensure the provisions are still accurate and current. It is difficult to put all the necessary life steps in a short column and raising a child with a developmental disability like Autism can be both daunting and fulfilling. But educating yourself about services, supports and resources will ultimately help your child improve their own self-advocacy skills.
Genevieve Athens is the President of Autism Lifespan Coach and the mother of a teenage daughter with ASD. Visit the website at www.autismlifespancoach.com or visit the Facebook blog for local autism news and events at www.facebook.com/autismlifespancoach.