Productive Patience - Making the Most of Your Wait for an Autism Diagnosis
Posted on 02/25/20 in Parent and Caregiver by Nathan Morgan
Over the past several years, autism rates have steadily climbed to one in 59 children having a formal diagnosis. There are many reasons for this, ranging from increased public knowledge of autism to a greater availability of medical and related service providers. However, to a family seeking a formal medical diagnosis, the wait can feel like an eternity.
Depending on factors such as the child’s age and the availability of providers in a given location, it’s not uncommon for families to wait a few months to a couple years to be able to receive a diagnosis.
Once a family gets in for an appointment, there also exists the possibility that the results of the testing will be inconclusive if there are other factors present.
For example, symptoms of autism may present differently in girls and so they may not appear to meet all of the criteria due to “masking” (using coping strategies to compensate for skill deficits/differences). If the provider is less confident working with this population, they may encourage the family to seek the opinion of a second diagnostician or team – possibly leading to another long wait time. So what are families to do? When working with families of children who do not yet have a formal medical diagnosis, I typically suggest some of the following:
Read about what to expect and connect with other parents.
There are many materials available that describe the assessment process and tools in parent-friendly terms. The Organization for Autism Research’s (OAR) Life Journey Through Autism: A Parent’s Guide to Assessment is one such tool. It provides a breakdown about how certain features are examined and also provides definitions for technical terminology such as “psychometric properties” and “norm-referenced assessment” that may be present in the medical documents. Even before your child has a formal medical diagnosis, the Milestones First Diagnosis Tool Kit is a quick read that can point you in the right direction for next steps so you can confidently plan ahead.
The OCALI Online Learning Modules are also a fantastic resource for parents, family members, and professionals. This program offers a content-rich training program to learn about autism and available supports. Lastly, it’s never too soon to connect with other parents who might be going through similar experiences. There are quite a few options for parent support groups and training sessions, such as Connecting for Kids’ Coffee and Chat or Mother2Mother. The Milestones National Autism Conference connects families and professionals, with session topics for everyone, from early intervention to finding employment as a person with autism.
Don’t wait to enroll your child in non-autism therapy services.
If your child is younger than three years, Help Me Grow/Bright Beginnings is an early intervention program that offers free home-based screenings and services to children with suspected developmental delays. They can provide support to parents and work with children on developing various skills. You can find a program specific to your area by clicking here.
If you suspect a disability or delay, register your child with your school district and request a multi-factor evaluation. This could lead to free intervention services for your child starting at age three. Try to start the process when your child is about four months short of three years old so that services can start right when they turn three.
If your child is age three or older, your child can still be enrolled in therapy services without an autism diagnosis. Speak with your child’s primary care doctor for a referral to a therapist with more specialized knowledge of the issues you’re seeing. An autism diagnosis may increase the variety of therapies some insurance plans will cover (i.e. many plans will not cover ABA therapy without an autism diagnosis), or the types of grants/scholarships available, but therapists provide treatment based on the child’s areas of need. The therapists may be able to complete an assessment and provide developmentally appropriate services under a different diagnosis category until your child has received their assessment results.
In addition to services such as speech therapy and occupational therapy, a child with a pending autism diagnosis may also benefit from expressive therapies such as music therapy. If your child is struggling with social skills, there are also options to support your child with expressing themselves. Although many of these types of services are not typically covered by insurance, the Milestones free autism Helpdesk can help you to locate scholarships and grants
ABOUT THE WRITER
Nathan Morgan, MSSA, LSW, first connected with Milestones in 2015 as a professional intern. He then joined the Achievement Centers for Children as a full-time Early Childhood Mental Health Social Worker. Nathan returned to Milestones in 2018 in his current role as Early Intervention/School Age Coordinator. He is a self-advocate, actively sharing his experiences at events, on panels, local news, and our annual conference. Nathan has a BA in Psychology and Japanese from Kent State University and an MSSA from Case Western Reserve University.