By Maureen Dillon, a clinical social worker at the University of California-Irvine’s Center for Autism & Neurodevelopmental Disorders, in Santa Ana, California. The center is one of 14 sites in the Autism Speaks Autism Treatment Network (ATN).
Like all ATN centers, we understand that most of the families who come to us have urgent concerns about their child’s development. They need help and guidance. But like many autism centers across North America, the demand for our specialized services exceeds our capacity.
We know it can be deeply disturbing to hear that it may be over a month before we can see their child for his or her first comprehensive evaluation. That’s why we – like many other ATN centers – have developed services for the families on our wait list. These programs are part of the “family navigation,” or care coordination, services that the ATN asks all its member centers to develop.
As a clinical social worker, I helped develop our center’s introductory programs – with a special focus on educating families about the many services available to them even before a child receives an autism diagnosis.
For instance, our center has long offered a broad range of in-depth classes for all families with concerns about their child’s development. My colleague Jeanne Anne Carriere described some of these classes in an earlier “ATN@Work” blog post here. However, we realized that many families on our waiting list weren’t aware of these resources.
First and foremost, we needed to educate families on the many options for addressing their concerns and helping their children immediately – while waiting for a full evaluation at our center. For instance, many parents don’t realize that they can to access many services to address developmental delays through their school systems and our state’s early intervention program.
So we designed an introductory class for the families on our waiting list. We hold these classes, free of charge, in English and Spanish, every other month.
In addition to myself, presenters include our Director of Behavior Intervention Kelly McKinnon, speech therapist Michelle Wahlquist, and Chapman Ability Project Director Jeanne Anne Carriere.
Brett Patterson and bilingual parent educator Veronica Bermudez join us from our center’s Child Behavior Pathways program. This early intervention program helps parents nurture positive relationships with their children, improve family functioning and effectively manage challenging behaviors.
Our wait list classes also feature a presentation by a care coordinator at “Help Me Grow Orange County.” This county program has counselors who help connect families to a wide range of developmental, learning, social and recreational services.
Getting to know each family’s needs
At the beginning of our “wait list class,” we invite parents to introduce themselves and describe their concerns about their child and the kind of help they’re hoping to receive. This enables our staff to begin pulling together resources for each family right then and there.
As mentioned, the class is our opportunity to provide an overview of the many programs and related services that families can access while waiting for their child’s evaluation – both through our center and in the community.
For example, we describe our center’s two parent-training programs. Both coach parents on strategies for handling their child’s challenging behaviors in positive ways. One is specifically geared for parents of children who have autism. The other is designed for any family needing parenting support – regardless of their child’s diagnosis.
We also offer workshops on how to access school-based supports including how to create an individualized education plan (IEP). In these workshops, we also connect families with community support groups, mental health services and social/recreational activities.
We end the wait list class with time for parents to ask questions and speak individually and confidentially with our program staff.
Providing help now
Here are a few examples of how we supported families at one recent class:
* Two families had children already diagnosed with autism. But neither child had received any behavioral therapy. We were able to explain how they could access applied behavior analysis (ABA) therapy through their health insurance while waiting for their children’s full evaluation at our clinic.
* Another family came with concerns about their 2-year-old, who was not making progress in his current early intervention program. We guided them through the steps they needed to take to register their concern with the state early intervention program and request a more-intensive therapy program.
* In another instance, one of our speech pathologists sat down with a mom confused by her child's school assessment and IEP. She guided the mother through each part of the assessment, explaining how to interpret the scores. She reassured the mom that the assessment results supported the placement her daughter received. They also discussed alternatives such as private therapy and a private preschool.
This is what we love most about these classes. We know that so many families confused by what to do next. They need help organizing all the vital pieces in their child’s care program. Our wait list class gives them direction and helps them become effective advocates for their children.
We’ve received wonderful, positive feedback on these classes. Parents and other caregivers have told us how the resources and guidance we provided enabled them to get support and services and feel more confident in their parenting. These classes are also great way for us to begin the positive relationships with our families that we hope will last many years.
We want to thank the Autism Speaks community for supporting our work through the ATN.