How realistic is the aim for "recovery?"
The notion of “recovery” was first described in the work conducted by Dr. Ivar Lovaas and colleagues at UCLA. Nineteen children received intensive and comprehensive treatment based upon Applied Behavior Analysis (ABA). Followup evaluations showed that nine of these 19 children successfully completed first grade in regular education classes with no support and I.Q.’s improved an average of more than 40 points and were slightly above average. Six years later, Dr. John McEachin, a co-founder of Autism Partnership, conducted an extensive follow-up study. It showed treatment gains were maintained since the end of treatment and they achieved scores similar to their peers in measurements of IQ, adaptive skills and emotional functioning. Seven of the nine had continued to progress in regular education classes. These children were classified as Best Outcome and also referred to as “recovered”.
Many people disagree with using the term “recovery” in reference to children with Autism Spectrum Disorder (ASD). This is partly due to a lack of belief that children can actually progress to a level of functioning where they become indistinguishable from peers. We are careful not to use the word “cure” because that term implies that the cause has been identified and removed.
A second reason why people object to discussions of recovery for children with ASD is a fear that it will cause parents to become desperate in their quest for successful treatment of their child’s disorder. Parents are often over-optimistic about their child’s progress in treatment and can set themselves up for incredible disappointment and heartache. If one examines the Lovaas studies, it is clear that the majority of children did not completely recover despite having received intervention under optimal circumstances, i.e., they began treatment before the age of four, received intensive treatment that continued as long as necessary in all environments by well-trained staff. Less than half of the children were able to successfully complete regular education on their own.
We believe expectations need to be balanced. Parents need to have hope because intensive behavioral treatment is demanding and requires hard work for a long time. But we think the goal of treatment is for each child to obtain “his/her own best outcome” and we know this is achievable. It is no different than it is with our non-ASD children—when they are young, we cannot know how they will turn out. Pilot? Doctor? Lifeguard? We have to be satisfied knowing that they have become the best person they can be, that they are happy and productive, and that they will make good choices for themselves.
Of course there are things we can and should do to ensure this happy outcome. For children with ASD this means not only making sure they get the proper number of hours of intervention, but from the Lovaas 1987 study, we also know there are a number of factors that contribute to successful outcomes. We consider the following factors the most important:
- Consistency of Treatment
- Early Intervention
- Utilizing Quality ABA
- Not incorporating other treatments that would dilute the impact of ABA
- Intensive supervision
- Parental Expertise
All of these factors together constitute the “proper” dosage of treatment. If these elements are not included, then prognosis may be lessened. It is similar to going to a physician and asking what needs to be done to get healthy again. For example, if you have cancer, the oncologist might say that to increase the likelihood of remission, you need to receive the appropriate level of chemotherapy over a certain period of time, that it needs to occur in a setting that meets certain standards from highly trained professionals, as well as follow the right diet, get enough exercise and plenty of rest. You also cannot assume that a half dosage of medication will get you half of the desired results—it might have barely any effect at all. You would not want to skimp, hoping that you would get “pretty good” results. The same is true for children with ASD. When children who need 30-35 hours of intervention on a year round basis only receive 12-20 hours of intervention for 42-45 weeks per year, or are receiving education from those who are not experts in ABA or receiving a regime of unproven eclectic approaches, it is highly unlikely that their child will reach his potential.
It is not our intention to cause distress to parents when we make recommendations that are difficult to follow, even though we know that can happen. We believe it is our obligation to provide parents with accurate information so that they can make informed decisions. We think this is ultimately fair, kind and ethical. We also want parents to be realistic about the outcome that is attainable. In our opinion parents should not undertake intensive behavior treatment if recovery is the only acceptable result. Obviously every parent would like their child to become indistinguishable after treatment. But what we should be aiming for is to have the child fully achieve their potential, whatever that turns out to be. Aim high, but know that you might not reach the target. Although a child may always have behaviors associated with ASD, ABA can still provide the best opportunity to develop life skills and thereby greatly enhance the quality of children’s lives. Research clearly showed that the eight children, who attained an intermediate level of outcome, benefitted substantially from intensive ABA and fared much better than if they had not received treatment. Even the two children who remained nonverbal at the end of the study most likely have a better quality of life than if they had not received treatment. One could certainly say that all of the children achieved the outcome that was the best they were capable of, even though the majority did not “recover.”