January 2, 2024

Parent Perspective: From Early Childhood to Young Adulthood—A Mother Reflects on Her Family’s Experience with ABA

To foster increased understanding between parents and providers and advance more compassionate ABA practices, the Bridging Perspectives interview series is committed to sharing the experiences of autistics and parents, alongside professional insights from behavioral providers. I am pleased to present the series’ first parent interview. However, to protect the family’s privacy and create a space that encourages open sharing, parent interviews will be published anonymously.

Respecting your privacy, could you kindly share a bit about your family's journey without disclosing any identifying details? 

My husband and I had our first child, a son, when I was 32. I had frequent monitoring because of previous cervical issues, and things seemed mostly very normal. Our son was born a few weeks late, after 32 hours of labor and two vacuum assists. From the day he was born, he seemed different from other babies. He cried more, ate more, slept less, had frequent rashes and illnesses, and only turned his head pretty much in one direction. A breastfeeding group leader noticed the same, and said I should have him checked for torticollis, which he did indeed have due to vision problems. When my son was about six months old, I began to learn more about autism, and mentioned it to my husband as a possibility for what I was seeing, but he expressed doubts, and asked if I might have postpartum depression – which I did not. Our pediatrician was no help whatsoever. Finally, through networking with other parents, I learned I could get my son evaluated through California’s Regional Center, and at age three they immediately diagnosed him with autism. My husband quickly got on board to team with me, leaving his denial behind, and our journey gained focus.

At what age did your son begin receiving services and for how long did services continue?

Before the autism diagnosis, when he was between 1 and 2 years old, our son received OT for torticollis (ocular) from a provider who came on Saturdays for an hour. She never initiated any talk of diagnosis, but when I suspected autism, she listened and encouraged getting more information. After diagnosis at 3, we added PT (weekly), speech (weekly, for pragmatics only as my son was verbal but scripted), social skills (first a Gymboree class weekly, then eventually a variety of community-based programs) and a shadow at preschool (daily). My husband took the required parenting class to get enrolled in ABA, and starting at age 4, we had in-home ABA two hours daily M-F after school/work, and also some weekend hours, for more than a year, I think possibly 16 months or more. We originally started ABA to try to help with potty training, as we hoped our son would be able to use the toilet independently by kindergarten. He was not able to meet that goal, but our ABA team was the key to getting him trained by mid-year of kindergarten. Once he began attending public school, in mainstream classrooms but with special education services and a case manager, our son continued having a classroom aid of some sort (sometimes an ABA provider, sometimes a para) until 10th grade and the COVID-19 lockdown. Services like speech and OT became school based, but social skills groups of various kinds continued outside of school for years, including over Zoom during COVID.

What was the focus of intervention when your son started receiving services? Did this align with what you considered to be the most important needs for both your son and family at that time?

Our first focus was potty-training, as my son seemed to have a lot of fear and rage around toileting, and we thought it would keep him from mainstream classrooms. That training was successful. Then the focus shifted to learning to play, and since we also have a daughter 20 months younger, she was a participant in daily ABA activities, like playing games, taking turns, etc.

As you're aware, ABA requires a significant commitment from all family members. I'm interested in understanding the impact that services had on your family. Additionally, I'd like to know if you feel your expectations were effectively managed and if there were specific considerations that made the process more manageable for you and your family.

Since before my son was born, I have been a teacher. When he finally was diagnosed officially at age three, we also had a daughter 20 months younger. Every day after I finished teaching, I would pick up both kids from their respective schools, drive home, and find our ABA provider sitting in front of our house ready to begin two hours of behavior work. It was grueling, and sometimes felt exhausting. My husband would arrive from work within the last half hour of the session, and it would be time for evening routines. We lived on fumes. My daughter was always part of the ABA activities, and I was also, though I could step away to do a chore or make a call. If we had weekend sessions, my husband took more involvement, so I could do household and work chores. We also went once a week for 10-11 years for educational therapy. Our lives centered around trying to support our children. We were grateful for ABA in many ways, and glad to have more adults to help us find our way; however, we also often felt under a microscope, judged, and drained. It tested our relationship, and our relationships with others. In our experience, ABA is as good as the provider. We went through many of those! Some were excellent, some were bad, and everything in between. Most were very young and new to the field, which was not always a bad thing. Turnover was hard, and transitions caused friction and upheaval. Some conflicts occurred.

When we initially discussed this interview, I asked you to rate your experience with ABA on a scale of 1 to 10, with 1 being the worst and 10 being the best. You rated it as 7.5. What do you feel your behavior team did well? What might have been done differently so you would have rated your experience more highly?

Things our behavior team did well: the best ones were flexible, listened to us, acknowledged real difficulties, showed empathy, understood when a tough day or illness required adapting, and showed respect for all family members and our home. Things that would have been better: Not all in-home “helpers” were well trained. Sometimes we had a great provider who was working well and wanted to stay with us, and we were told we would lose them on a moment’s notice because things were going well and they had a tougher case who might benefit from our provider, and this felt unfair and difficult. Sometimes we experienced arrogance and condescension from providers who were young, inexperienced, and assumed they knew better than we did how to raise our child based on a few months of training. I would say good communication was always needed, and when we had it, it made up for an array of other issues. Also, the thing we did and still demand is respect. Without it, the experience was unpleasant, and we were unwilling to tolerate it.

Your son is now a young adult enrolled in college. Recognizing that parenting is inherently uncertain and imperfect, looking back, is there anything you would have done differently in terms of behavioral support?

I believe that we did the best we could at the time with the resources that we had. I do wish I had been able to plan more for how it might impact our younger child, who often was like a plus-one, and I am unsure how it affected her, or her relationship with her older brother. I imagine maybe we could have handled that better. Also, I still worry about the messages about compliance that our son received. Yes, we needed him to learn a degree of that, but how did it impact his motivation, and could we have balanced things better? We frequently have talked about the struggle to know how much to prepare him for the world, and how much to prepare the world for him, as well as how to keep respect for autonomy a priority.

As one of the aims of this interview series is to foster shared understanding between parents and providers, I would appreciate your insight. What advice do you have for behavior professionals?

Try as hard as you can never to make assumptions about the parents of children with special needs. Always treat all members of a family with respect. Imagine how hard it would be to have “helpers” in your home telling you what to do all the time. Listen carefully before passing any judgments. Clarity is kindness. A provider might have expertise in certain areas, but families have expertise about their loved ones that is immeasurable.

What is your definition of a good behavior analyst?

A good behavior analyst leaves their ego out of their analysis, and grounds their work in helping people thrive long-term, rather than coercing compliance. A good behavior analyst believes they have things to learn from their clients, as well as things to teach.

What is one way neurotypicals can foster greater inclusivity for autistic individuals?

Play. As an educator and a person, I believe meeting a person where they are and playing with them on their own terms sometimes is one of the most inclusive acts. 

Can you recommend any resources for autistics, parents, or the providers who support them? 

Not a scientific resource, but something I have considered invaluable: a diary of a mom. Overall, I would say we have had plenty of wonderful practitioners in our lives, but the number one resource we ever encountered was the parent community. Connect with others in similar situations, and especially with those whose kids are a few years farther along than yours; there is a lot of wisdom from those who came before you, in my opinion.