What I Know as an Autism Parent and ABA Clinician

Shiva Lydon was two and a half years into motherhood before autism hit her radar and she learned anything real about it. Her son had just been diagnosed, and her picture of autism to that point came mostly from fear. “Everything that I knew about autism was scary and unknown,” she says.

Today, seven and half years after her son’s diagnosis, Shiva is a board certified behavioral analyst (BCBA )and now the continuity of care director at Center for Social Dynamics (CSD), working from the greater Sacramento area where she lives with her husband, Patrick, their three cats — Omega, Peter and Kitty — and her now 10-year-old son, Henry, whose diagnosis changed the course of her life in multiple ways. Shiva also sits on CSD’s Neurodiversity Advisory Board, an internal body of neurodivergent team members and parents of children with neurodivergent diagnoses, who review all CSD messaging and therapy approach criteria.

Little did she know that her son would lead her into such a personally fulfilling career.

How a Diagnosis Became a Calling

After a pediatrician’s referral and an assessment confirmed her son’s autism diagnosis, the California state-funded Regional Center serving her area, which helps connect families to a variety of services, became her family’s lifeline.

“I’d never heard of ABA until Henry’s diagnosis. My knowledge of ABA was previously nonexistent,” Shiva recalls, until Regional Center referred her to a small ABA company that had just opened a clinic about 25 minutes from her home.  Her son was approved for 40 hours a week of clinic-based care, where she built a close enough relationship with her son’s provider that his therapists and the clinic, seeing her intuitive acuity, soon suggested she consider working in the field herself and becoming a BCBA.

Shiva says she was hooked and committed herself to a career in the field. She went back to school for her master’s degree and started over as a registered behavior technician (RBT), at a more mature age than most of her fellow students and RBTs beginning their ABA certification  path.

Not long after, COVID hit, forcing her to learn the fundamentals of the job in the middle of a pandemic while raising a newly diagnosed toddler in lockdown, which, she says, was no easy feat. She persisted and endured, earned her supervised hours, passed her BCBA exam, and, fast forward, joined CSD two years ago in her third professional ABA role.

What Textbooks Don’t Teach

Graduate school taught Shiva how to write treatment plans and collect data, but not what proximity to her son’s diagnosis and that life-learned experience would do for her down the road. “I feel as if it allows me to really approach my work with a greater level of empathy that maybe others are not able to do,” she says of what her personal experience brings to the table. “It’s not a deficit on their part. It’s just that they don’t have that lived experience to be able to understand more intimately.”

Shiva talks often about the goal of ABA being to “fire itself,” a phrase she picked up from experience rather than any textbook. And she knows, from the inside, what it costs a family emotionally to need a service and what it means when they’re told they no longer do. 

Shiva vividly remembers the day Henry graduated from services. She describes having a “full emotional breakdown” that she didn’t expect and couldn’t explain, even though she knew clinically that graduation was the goal all along. There were still things she didn’t think her son had fully mastered, and she says her primary, panicked thought was simple: “If no longer this team, then who is going to help him?”

That memory influences how she now handles her caseload families’ discharge conversations. She raises graduation early and revisits it often, so nobody is blindsided the way she felt. Shiva is also open and honest in telling families that she cried at her own son’s graduation. It’s a detail she says she offers deliberately, because it’s what parents and caregivers need to hear from someone who has lived through it. 

Meeting Families Where They Are

Shiva also cares passionately about caregiver involvement. Because a clinical team can teach a child something excellent inside a session, she says, such as brushing their teeth, matching colors, or tying their shoes. But if nobody practices that skill for the rest of the week, it won’t generalize. 

“What about all the other hours of the day?” she asks, rhetorically. As Shiva points out, clinicians only have a given child for a handful of hours a week. The rest belong to the family, and Shiva says it’s why she tries to set the expectation from the very first conversation that caregiver involvement is critical, before frustration has a chance to set in on either side of the ABA table. 

That same directness runs through how she frames the caregiver-therapist relationship.

She tells families, “‘this is not me coming in and telling you this is the only way to do it,’” she says. “‘ABA needs to make sense for you and it needs to make sense for your child.’” If it stops making sense, she says, then that’s worth a real conversation, even if the honest answer is that services are no longer the right fit. Shiva says that’s hard for some clinicians and ABA provider companies to acknowledge. 

Her own experience on the parent-caregiver side of the table lets her have that conversation without the fear that admitting it means she’s providing poor ABA therapy services. “It’s allowing me to have those real conversations with families on a human level,” she says, “and approach them as a human first who understands autism life, and as a clinician second.”

Shiva is also candid that lived experience doesn’t make her immune to the same comparisons that trip up the parents she counsels. 

For example, she says, her son is two and a half months younger than her nephew. As toddlers, she watched her nephew hit every milestone on time or early — walking, talking, going on his first Disneyland trip, to his first birthday party, joining the soccer team — and be celebrated publicly, while her own son reached the same achievements points later, and by the time he did, the applause, she reflects, had already moved on.

“You celebrate when things are supposed to happen,” she says. “But when your kid’s older and they’re only then accomplishing these steps, you don’t get met with the same reception from your family, your friends, or your community.” That’s why, she says, she had to learn to embrace celebrating milestone achievements on her son’s own timeline instead of everyone else’s.

The Question Nobody Wants to Say Out Loud

Shiva also pragmatically from personal experience believes there’s a question sitting underneath nearly every family’s first conversation with a BCBA, one that almost nobody dares speak. It is this: is my child going to get better? 

“I hate phrasing it that way,” Shiva says, “especially as someone who works in the field.” But what she’s learned to listen for beneath those questions is guilt more often than doubt. Guilt about wanting something different, and guilt about needing relief and help that parents and caregivers feel ashamed to ask for. 

She says she recognizes that guilt in herself, too, and not only from parenting her son. That’s because Shiva is currently going through her own ADHD screening as an adult. It’s also why she’s willing to step slightly outside the technical boundaries of her job when she senses a parent is drowning.

She recalls one mom raising an older challenged child while pregnant with a third baby, who was clearly overwhelmed. Shiva asked her directly, outside of any treatment plan, whether she had any support at all for herself as well as her children, baby-to-be, and family overall. “I know that you cannot show up for your child if your cup is empty,” Shiva says, knowing it sounds trite. “You just can’t do it,” she says adamantly, understanding firsthand the extreme stress and duress parents and caregivers of autistic children are often silently drowning under. 

The Message Autism Parents Need to Hear

For a parent sitting where she once sat, in the earliest and hardest days after a diagnosis, or feeling lost and alone again at graduation from services, Shiva’s wants parents, caregivers, and families to embrace that “the diagnosis doesn’t define the child, and it never will, regardless of how many appointments or IEP meetings or hard nights get added to the pile along the way.”

She’s also candidly supportive that grieving the version of parenthood you once pictured is allowed. As is celebrating a twenty-five-year-old learning to make his own sandwich as the real and valid milestone it is, even if nobody publicly claps for it the way they clapped for a first step decades earlier.

Shiva believes it to her core, personally, professionally, and daily.

“I breathe autism and ABA,” Shiva says. “It’s both my life and what I do for work.” And she wouldn’t have it any other way. In her house in Lincoln, California, autism was never set aside for a special conversation. It’s just part of who her family is, alongside three cats and a ten-year-old who these days, she says, is mostly just a regular kid thanks to the dedicated and honest clinicians who provided ABA to her son and pushed her and her husband as parents to have the confidence to follow through — all in.