An Exclusive Look at AUTISM With Rayni Anderson Brindley
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.
Today’s AUTISM Interview is with Rayni Anderson Brindley, Senior Vice President of Organizational Development with Devereux, who is responsible for implementing various strategies and initiatives across the Devereux organization. As part of her role, she manages Devereux’s operations support and learning functions, with a focus on business process improvement.
Also, Brindley oversees the organization’s quality improvement (QI) function, where she is responsible for the QI data collection process, ensuring accurate and meaningful data usage throughout the organization, and integrating QI with operations to drive program quality and safety.
Most recently, she served as Devereux’s vice president of operations and organizational development. Brindley, whose behavioral health career spans nearly 20 years, has worked in various positions from direct care and clinical to management. Before joining Devereux, she spent more than 12 years at NHS Human Services, most recently as vice president of behavioral health, where she managed nearly half of the organization’s adult behavioral health and children’s service continuum.
Brindley is a Board-Certified Behavior Analyst (BCBA) and holds the following academic degrees: Bachelor of Science in Elementary Education from Pennsylvania State University and a Master of Education in Special Education from the California University of Pennsylvania. In addition, she earned a certificate in Applied Behavior Analysis from Pennsylvania State University.
She has been published in the areas of clinical issues and best practices and has presented on a variety of topics related to autism spectrum disorders at national and international conferences.
A is for Awareness
When and how did you first become aware that something was different?
As a Board-Certified Behavior Analyst (BCBA), I worked in the field of autism for many years before my son was born, so I knew the signs of autism well. However, when I began to see them in my child, I hoped someone would tell me I was wrong.
When my son was nine months old, he began to blink and squint in an atypical way. I kept an eye on it, told the pediatrician and was relieved when it stopped. As he began walking, I noticed his extremely high pain tolerance. He could fall, hit his head, and not cry. He didn’t respond to loud noises or others’ emotions as one would expect a toddler to do. I specifically remember rocking him in our reclining chair when we accidentally tipped backward. I hit my head and, naturally, yelled out and cried. My son, however, did not react at all to my emotional state.
At age one-and-a-half, he began biting his peers. Although developmentally appropriate for his age, the biting never stopped. He didn’t respond to standard daycare interventions and was unfazed when he hurt another person. He showed little interest in his peers, as they were simply “things” that took his toys. He became obsessed with colors, numbers, and letters, memorizing all of them at 20 months, without being taught.
I distinctly recall one night, during his bath time, when he counted independently to 10. My first thought as his mom was, “Wow! He’s a genius.” Then I stepped back and realized, “My son has Asperger’s.” He was formally diagnosed when he was two-and-a-half-years-old.
U is for Unique
How has this experience been unique for you and your child?
I’ve spent my career studying autism spectrum disorder, so going through this journey with my family was both unique and interesting. I found myself creating data forms and editing behavior plans because I had the background and knowledge to help him. It was critical for me to stop worrying about stepping on toes and focus on what was important—advocating for my son and his needs.
Switching roles and staying in my lane as a mom was difficult. I just wanted to be the parent, but I refused to accept anything less than the best care for my son. Going through this journey has made me a stronger and more balanced professional in the human services field because I can now advocate for both sides.
T is for Tools
What tools are there now that were not there at the beginning that could help other parents?
Navigating and accessing tools and resources can be very challenging. Typically, families are given a list of services and providers with contact numbers, but they aren’t coached on which services are best matched to their child’s needs. This is why so many families turn to other families for guidance. Unfortunately, it’s impossible for parents to have a full view of all service models and oversight requirements.
Family advice is invaluable, but it needs to be accurate, and that’s why I’m a proponent of the parent/family navigator role concept. We have this type of position at Devereux (Amy Kelly, our director of family and community services, and some within our centers), and we are seeing more roles like this emerge in the field. This position has become one of the most meaningful new tools out there because people who have gone through the same experience can help families untangle the web of funding and services while offering support and guidance.
I is for Inspire
As a parent, when you look at your child or children, what inspires you?
My son is one of the most wonderful and resilient people I have ever met. He loves with all his heart, and he has the best laugh in the world. His memory is amazing, and his interests fascinate me. By age three, he could identify every make of vehicle by their symbol. By age six, he memorized every cast and crew member of all his favorite TV shows and has become a self-taught expert on the continental drift and all geological periods.
From a rare food allergy as a baby and toddler that severely restricted what he could eat to an immunodeficiency resulting in multiple, serious infections and, finally, an autism diagnosis—my son has been through so much in his young life. He has transitioned staff, programs, and schools multiple times. Through everything, he remains a happy, pure, and sweet soul. If that isn’t inspiring, I don’t know what is.
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S is for Support
Are there things you struggle with or have struggled with, and what types of support do you still need?
Judgement—especially from other parents. When you have a child who can be aggressive or act out, especially in public, it is an isolating experience. People who haven’t parented a child with special needs can make you feel like a terrible parent. Parent guilt, which many have in some way, is extremely amplified for special needs parents, so judgment can be disheartening. I want more people to remember to be kind, as they may not know the full story behind someone’s behaviors or actions.
As a special needs parent, don’t forget you need to make time to get help and recharge, too! Self-care is so important, yet many of us fail in this category. Parental stress is a real thing and can have serious repercussions if it is not addressed. For example, formal support groups are great because parents can talk with people in similar situations.
M is for Manage
What keys to success can you leave with parents so that they can better manage their day to day efforts?
Find trusted childcare. This was one of my biggest stressors because I knew I needed support. My advice is to work with local universities or service providers to find students or staff who are trained and have experience in this area. Interview people, so you feel comfortable. I started having someone come over to play with my son while I did chores around the house. I got things done while being there to see how they interacted. Then, I felt comfortable leaving the house for short periods of time.
Remember you are not there to make friends. I read an article that talked about this for IEP [Individualized Education Program] meetings, and I have quoted this often. Don’t be afraid to speak up for what your child needs because you are worried it will upset others. Advocating for your child, when done calmly and respectfully, is never wrong. You are their voice.
Find other parents to talk to, whether it be through your child’s school, in the waiting room at a therapy group or a formal support group. There is nothing as cathartic as speaking to someone who gets it. Your friends and family will all try, but no one will validate your feelings like another parent who has been through, or is going through, the same thing. I am so grateful for my tribe of special needs parents!
Finally, be gentle with yourself. Just like your child, you are doing the very best you can, and no one can do everything. Remember what the airlines say—put your oxygen mask on first before helping others. You can’t fill anyone’s cup if your pitcher is empty. Self-care is not selfish—it’s how you stay strong to be the rock for your child.
This article was featured in Issue 92 – Developing Social Skills for Life