Post-Diagnosis of Autism: An Era of Engagement
Patrick D. Paul
February 11, 2019
For the 1 in 59 diagnosed with Autism, there's an entire family impacted as well. From the moment that the words "Autism Spectrum Disorder" are said by a developmental pediatrician who has taken a child through a host of tests and parents/caregivers through a journey of seemingly endless interview questions, everyone who loves the individual diagnosed is immediately thrust into a new era of their lives. It's an era that can be marked by complex emotions and at times, devastating feelings of isolation—but it's also an era that can be marked by learning, growth and total engagement.
I am ever in awe of the spirit of families who, after processing what the diagnosis means for their loved one, immerse themselves completely in the study of autism, programs available, and ways to help. No matter how political, religious or socio-economic backgrounds may differ from one family to another, the desire to optimize the quality of life for those we hold near and dear is universal. Families thrive the most when they are engaged—and so, too, do their loved ones with autism.
Engaged Families Pave the Way for Increased Success for Loved Ones with Autism
How a family gets and stays engaged might look slightly different, but there are certain experiences fairly common to all impacted by autism.
Following a diagnosis, most parents and caregivers start exploring what therapies work best, consulting with professionals to ensure that they understand how to access and apply principles of evidence-based practices like Applied Behavior Analysis. Sometimes this means completely shifting work schedules to meet with behavior specialists—or perhaps reorganizing living spaces to make room for Picture Exchange Communication Systems. Sometimes it means hiring the right staff to help or finding out what resources are available for free through state-funded programs (which vary by state). They do what it takes, though, because they're fully engaged in the success of their children.
In many cases, the selection of an educational or agency program is at the root of all other decisions. Families look for highly trained staff. They look for examples of how schools have successfully addressed individual needs. They look for agencies who understand the importance of building collaborative relationships. They look for those who understand that when you meet someone with autism, you meet one person with autism. Educational and therapeutic plans must be highly customized; not only should those plans focus on needs, but they should be focused on strengths and opportunities. Engaged families recognize that they will be the best advocates for their children—in fact, parents often report that their nonverbal children have helped them find and get comfortable with their own voices.
For some families, being completely engaged means knowing when the time and circumstances make full-time residential placement the best option. While this is a deeply painful decision, they will note that it was absolutely the right one. Residential centers are designed to support the health, safety and well-being of people with autism, and they can also provide the intensity of schooling and therapy necessary to ensure that potential is maximized. Those families remain totally engaged through regular communication with staff, frequent visits, involvement in parent and family support groups and volunteer initiatives to raise funds or awareness.
As Executive Director of Anderson Center for Autism in Staatsburg, New York, I am ever in awe of how engaged our families are—every step of the way. The era which follows a diagnosis of Autism might look different to each and every mom, dad, guardian, aunt, uncle or sibling and I know that it can be fraught with stress and worry. However, I've seen how families embrace every opportunity to provide the highest quality of life possible for a loved one with autism and it makes every era ahead brighter than they probably could have imagined.