Parents are central to an effective home-based program. Parents are not just advocates for their kids, Celiberti said. "They are historians of their kids' lives, and they can become even more informed, and play an active role in the acquisition of skills," Celiberti said. They report to ABA providers on what happens at home when the providers aren't there. And they can learn how to model appropriate interactions for other family members (think grandparents, friends, other family members); they can show others what to do, how to respond (or not respond) so that they reinforce positive behaviors and refrain from responses to a child that reinforce undesired behaviors.
The provider-parent relationship can come with built-in challenges, Celiberti said. Sometimes service providers have to deal with misconceptions about ABA (the visiting grandmother who objected to the "dog training" exercises her grandson went through was one example). And while parents as a group have never been more sophisticated as consumers of autism services, they can be susceptible to others' objections. A growing array of ABA alternatives, including medical treatments that offer quick results, can distract them. And the challenges of having a kid on the spectrum -- managing the case, juggling many visiting providers at home, treatment decisions, financial stress -- combined with other facets of life such as other children in the family, aging parents, job-related issues and maintaining a marriage -- can combine to make parenting a tough role.
He laid out 10 strategies for parents to enhance their relationship with ABA providers:
- Build a working understanding of behavioral terminology, so they don't sound off-putting to parents. Resources to help include the Association for Science in Autism Treatment, behavior.org, the website of the Cambridge Center for Behavioral Studies, and a group within ABA International called the Autism Special Interest Group, which publishes an online consumer's guide to ABA services.
- Understand that your history with past providers can color a family's attitude and approach to a new provider
- Communicate concerns efficiently, clearly and early. Don't wait for problems to fester.
- Make feedback constructive and balanced.
- Share information on cultural matters when needed. (Religious observances for example.)
- Expect data-driven decision-making from all providers. What works when depends on what the evidence shows. (This was a key take-away from the conference, as other dispatches here will show.)
- Tell ABA providers if you (or your spouse) can't take data, so an ABA provider can make alternative arrangements.
- Be open and honest if you are taking part in alternatives to ABA, including biomedical therapies. An open dialogue is essential, Celiberti said.
- Network with other families and share experiences and resources with them.
- Understand your legal rights and how to best advocate for your child. Celiberti recommended Wrightslaw as a good online resource.
Even with these challenges, a sibling's involvement in a home-based ABA program can be highly motivating for an autistic child. "Siblings can be excellent role models," Celiberti said, and they can have friends who can increase a base for important peer interactions for their autistic sibling. Siblings can participate in ABA sessions, by receiving initiations of communication, by modeling a desired response or behavior. They can help show how to take turns, play cooperatively and develop conversational skills.
In his presentation, Celiberti said what he called positive characteristics and negative characteristics of ABA providers.
Positive characteristics mean ABA providers:
- are up-to-date on best practices
- demonstrate a well-developed repertoire of skills (they don't handle every situation the same way)
- can model teaching interactions
- consider the age-appropriateness of skills being targeted
- evaluate the effectiveness of their interventions
- are sensitive to parents' perspectives and the needs of the family
- have the communication skills to give and receive feedback
- prepare parents for the next treatment setting for their child
- are willing to address broader concerns, such as their child's participation in religious observances, and bed-time issues.
- reliance on one teaching tool or method
- slow response to stagnant performance or new instances of challenging behaviors
- act defensively when parents ask questions about services, service provider competencies or recommendations
- act to intimidate or patronize parents, or others on a treatment team
- disparage others in the autism field
- engage in unethical behavior, such as coercing a parent to give consent to videotape a treatment session in exchange for services.
Lastly, ABA International, a non-profit entity, is making both a webcast of the conference sessions available online for a fee, and also plans to produce a DVD version of this conference. Organizers said it would be available, again for a fee, in March.