Encouragement Speaker Derrick Hayes gives an AUTISM Interview by asking six questions through each letter in the word AUTISM to give readers an insightful perspective from parents, experts, entrepreneurs, and other leaders in the field.
Sandra Gudat-Benke is the CEO of Customer Communications Group and mom to her autistic son, Alec. She has worked for over 30 years with C-suite executives and boards at organizations like Nordstrom, Macy’s, and GM to help them articulate a common vision for customer centricity and then build the roadmap to achieve that vision. Sandra lives in Denver, Colorado with her husband and three children.
A is for Awareness – When and how did you first become aware something was different about your child?
My son started having learning and behavior issues in school in the first grade. Alec tended to march to a different drummer; he saw and experienced the world very differently and became very focused on his areas of interest. We had him tested and he was diagnosed with severe dyslexia and sensory processing disorder. We followed the SPD treatment path for a long time. But when he was 13 years old, I felt like we had hit a wall. The worst feeling in the world as a parent is feeling like you are failing your child.
I called my brother-in-law, a pediatrician, crying. He recommended that I talk to the best pediatric psychiatrist. My son and I met with Dr. Harrison Levine for two hours, and at the end he suggested I have Alec tested for autism. I was shocked, but once the test confirmed his hunch, I felt like I had finally found ground zero and we could now make progress in helping Alec.
U is for Unique – How has this experience been unique for you and your child?
Unfortunately, Alec was diagnosed with ASD late, so some therapies at that stage are not as effective as they would have been if he had been diagnosed earlier. That said, having a child on the spectrum has opened my eyes to the tremendous neurodiversity that actually exists in the world. I think that is a good thing!
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T is for Tools – What helpful tools exist now that you didn’t have access to?
There is so much more awareness now that I think it can help parents. The big thing is parents shouldn’t be afraid to pursue testing if they think something may be up; it is so important to begin interventions as early as possible, especially ABA therapy. There are organizations like Firefly Autism in Denver that are really on the front lines of research and treatment and can help parents navigate raising a child on the spectrum.
I is for Inspire – As a parent, when you look at your child, what inspires you?
Alec is the most fascinating person I know. He loves history and loves to dive deep into a time period, learn all about it, and eat, sleep, and live the period. I love learning with him and just getting his perspective. He has very unique outlooks on things that are often very wise.
S is for Support – Are there things you struggle with or have struggled with, and what types of support do you still need?
Alec just turned 18 years old and will be graduating high school next month. We are still trying to map his next phase of life to set him up to reach his full potential.
M is for Manage – What keys to success can you leave with other parents so they can better manage their day to-day efforts?
Do not compare yourself to parents of neurotypical children; you are on your own journey, one they cannot fully understand. Find other parents that are on your journey; it is hugely helpful. I would also recommend working with professionals who can help set your expectations around the development milestones you can expect for your child. It makes a huge difference in the day-to-day to have appropriate expectations for your ASD child.
This article was featured in Issue 116 – Enhancing Communication Skills