Just try asking Connie and Harvey Lapin to recap 44 years as parent activists in the world of autism. In hyperactive tag-team, the couple bursts forth with stories and ideas, only to interrupt themselves and one another with still more anecdotes, ideas and accomplishments.
In the end, through laughter and tears, they manage to produce a coherent story of the tireless chutzpah, visionary courage and what they call serendipity, but is probably more about persistence, that helped them change the landscape, locally and nationally, for people with autism.
Harvey, 75, and Connie, 73, both grew up in Detroit. The second of their three sons, Shawn, was born in 1968 and was diagnosed with autism in 1970. Shawn is mostly nonverbal, and when he was younger was prone to violent and self-destructive behavior. He now lives in his own apartment with 24-hour help.
In 1970, there were no services for Shawn, and autism was misunderstood as childhood schizophrenia, often blamed on a frigid mother (Connie melts with warmth), and was treated with what today would be called abuse. The Lapins were told Shawn was incapable of feeling love or attachment and that the state had no obligation to educate him.
The Lapins had no intention of standing for any of that.
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Shamelessly exploiting every connection they could to rope in funding, advocates and spokespeople, they founded a system of group homes and support for independent living, borrowed against their own home to put on a celebrity telethon and have served on or led countless national and local boards, blue-ribbon commissions and task forces.
“He thinks of the great ideas, and I am the one who has to operationalize,” Connie said, standing in sequined boots amid piles of newspaper clippings, old posters and documents piled all over the back room of their Northridge Spanish villa, a collection California State University, Northridge, is interested in acquiring.
Connie, a trained speech pathologist-turned-full-time mom advocate, jokes that she caught ADHD from Harvey, a high-school football player who says he couldn’t read until fourth grade. He still practices dentistry full time in Northridge.
Once a week, Harvey has a boys-night-out with Shawn, where they take in an action movie and go out for Mexican food.
Connie and Harvey are most proud of their legislative work. Using political advocacy and lawsuits, they were key in getting state and federal laws passed that changed the definition of autism from a mental illness to a developmental disability, required the state to appropriately educate kids with autism and, most importantly, prohibited schools and therapists from using physically abusive methods to teach children with autism.
Shawn still suffers from post-traumatic stress disorder because of aversion therapy educators used on him.
The Lapins are now working on legislation to allow self-determination, where people with disabilities can have a say in how the state spends money on them.
Harvey tears up when he talks about kids he meets today who are as severely impacted by autism as Shawn was but who are able to move happily through the world.
The Lapins know they are uniquely positioned to get across a deceptively simple message to young families: Your child with autism will grow up to be an adult with autism. So keep looking for cures and recovery, but focus on the services they need, backed by sound public policy, to be happy. For life.
“Your kid is going to grow up one way or another, either with no services, poor services, or good services,” Harvey said.
“There has to be a sense of urgency,” Connie added. “Because this is forever.”