Thank you for covering such an important topic, one that is often overlooked by the autism treatment literature: how having a child with a developmental disability—in this case autism—may impact the whole family. The success of treatment is dependent on the adherence of consistent implementation of intervention strategies and parental resources involved in the child’s care. Therefore, it is imperative that practitioners not only focus on the nuts and bolts of an evidence-based treatment protocol, but also on the family’s ability to implement these treatments, as well as assess and address any roadblocks, which may impede progress.
Dr. Markowitz is accurate in stating that being able to treat the entire family system, and not just the autism symptoms, may be beneficial for both the child and the family. According to the National Autism Center’s Standards Project, which compiles research outcomes on different treatments for autism, applied behavior analysis (ABA) is one of the most scientifically validated established treatment approaches. However, ABA often requires extensive training of family members, school personnel, others in the community, and not necessarily direct treatment time between the individual and the practitioner. As important, if not more than the actual strategies implemented, are the consistency and fidelity with which these treatments are carried out on a daily basis.
This study is an initial step in evaluating a measure for the early detection of quality of life impairments in families of young children with autism and related developmental disabilities. It is interesting to note the author reported that family quality of life impairment often starts before a formal diagnosis is made. The hope is that by using this measure early, practitioners may be able to assess areas of impairment in the family which may hinder implementation of treatments such as ABA, and provide a broad-based treatment approach.
If behavioral issues, social difficulties, and/or cognitive delays are placing stress on members of the family, the members may be less likely to implement effective evidence-based treatments with the person with autism, due to diminished and limited resources. For example, having a highly trained and experienced practitioner develop and conduct a comprehensive treatment program during a few home or highly controlled clinic visits is entirely different than a family member or parent implementing these effective but intensive strategies. This is especially true when other competing contingencies (e.g., work related stress, financial issues, marital discord, health issues, emotional challenges, and caring for other children in the family) punish or lessen opportunities for adherence. By directly addressing these challenges with families, along with treatment development, the probability of positive outcomes for all involved is increased.
Thank you for highlighting the need to look beyond the contingencies that control the behavior of the child and to look at those controlling the behavior of the parent or family member. This study is a welcome initial step in assessing the impact of autism spectrum disorders from the family perspective. As more research clarifies how different domains of life may be affected by being a family member of a person with autism, future studies should be geared to addressing these roadblocks directly to ensure a broader and effective treatment approach for those with autism spectrum disorders and related developmental disabilities.
Sincerely,
Justin DiScalfani, Ph.D., BCBA-D and Leanne Tull, BCBA
Association for Science in Autism Treatment
