Ordinary Families Doing Extraordinary Things

By Heather Zakson, Esq

Happily, it is more and more common for children to recover from autism with timely proper therapeutic interventions, yet it is rare to have the chance to hear from families who have traveled that road. On Thursday, February 4, over 100 people gathered at a very special event to do just that. LA FEAT and the Law Offices of Bonnie Z. Yates co-sponsored a panel discussion featuring ten parents of children who, after intensive treatment over several years, have recovered from autism. The panelists generously shared their experience of emerging from the often bleak and fearful experience of an autism diagnosis, into the reality of a “normal” family life. I was fortunate to be among the audience as we were invited to look into lives of these families who are really so ordinary and yet have accomplished such extraordinary things.

Each recovery story that we heard that night is unique. At the time of their diagnosis, some children were utterly incommunicative, others expressive yet non-verbal, another learned to read before he could talk. Some were hardy and healthy kids, and others had pervasive allergies that limited them to no more than 5 or 10 foods for years of their childhood. They came from different communities, backgrounds and cultures. They shared three important identifiers: they were all diagnosed with autism, which they were told was irremediable; they all received therapeutic treatment utilizing Applied Behavior Analysis methodology (ABA); and they all had parents who made crucial decisions along the way to set other priorities behind their child’s ABA program and trajectory toward recovery.

Our panelist parents are teachers, businessmen, stay-at-homers and professionals. All of them found that they had to educate themselves about effective treatments for autism. All of them sacrificed time and money to sustain the programs. Families sold off property, turned their homes into treatment clinics and hired attorneys. One mom began her workday at 3:00 am, to be home after 11 am to participate in her son’s therapy. Another dad related, “we sued, and sued, and sued again.” Another mom shared how she included her other children in her son’s ABA therapy so that ABA became part of their upbringing.

After their years of struggle, what these parents have to show is magnificent in its ordinary-ness: their children are attending regular schools, making friends, playing sports and growing up. The older ones are teenagers, and they are driving, working part-time jobs, managing their money, and going away to college! These everyday experiences are precious gifts to the ten parents who shared their stories with us last Thursday, because a few years ago, they were assured that their children would never grow up to be such “normal” young people.

ABA therapy is a treatment methodology that is available widely, especially in southern California. Thousands of children are being guided on this journey every day; not all of them will lose all of the symptoms and sequelae of autism, but each of them will have the opportunity to develop to their full potential, and many will grow up to be productive adults who live independently and participate in our communities. This is a chance that they would not have without the proper interventions.

Effective ABA therapy changes the developmental trajectory of children with autism from deterioration or stagnation to development and progress. It teaches children how to learn and participate, and equips them with tools to master their most difficult behaviors and to fight against autism’s neurological riptide that would draw them far out to sea, isolated and misunderstood.

ABA programs are hard work, and they are expensive and time-consuming. Today, several years after peer-reviewed research in study after study showed the overwhelming benefits of ABA as compared with other interventions, the funding agencies that families depend on can be stubbornly resistant. Parents of newly-diagnosed children are rarely educated about effective treatment unless they seek expertise and support on their own. School districts still regularly program young children with autism in group-learning situations that are antithetical to research-proven methodologies, and appoint teachers with inadequate training and education in specialized treatment.

So what is a parent to do? How to find hope when the landscape looks bleak?

Look to the experience of our fabulous panelists, and take their example.

They devoted resources and money. They sought help from advocates and attorneys. They internalized the behavior modification and training models and “walked the walk,” for three or four or even six years. They enlisted the help and support of family and friends to arrange playdates with typically developing peers. All of them shared that they cried and feared and worried that their children would never overcome autism – but they all got to that finish line.

At that point, once again, the different families’ experiences diverged. A couple of families had parties to acknowledge their children’s accomplishment. Some others quietly moved their children to new schools or communities where nobody is aware of their past diagnosis or their treatment history, and autism plays no part at all in their lives. The stories of two of our featured children are relayed in the movie “Recovered “ by Doreen Granpeesheh and Michelle Jacquin; those two young men are now in college.

Our office is inspired by the stories of these children and by all the children we have the honor to assist. We keep fighting for effective educational and therapeutic interventions for all children with disabilities, and we believe that these outcomes are something worth fighting for.

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