Recovery vs. Meaningful Progress The field of autism is littered with loaded phrases that people fight over. This is nowhere more true than the word “recovery.” To many families it has become a code word for hope and optimism, and a rejection that autism is a life sentence of misery for both the child and the family. Autism has become a very treatable disorder. With each passing month there is more and more understanding of the neurological underpinnings of the disease: the lack of interconnectivity of the different parts of the brain, the immature neurons that have not gone through the pruning process; the problems with the mirror neurons that interfere with imitation; etc. These discoveries lead to more effective treatment –both medical and behavioral. So HOPE is definitely on the horizon, and many children have improved far more than anyone thought possible. But the new treatments and possibilities that exist for children with autism can also create enormous and crippling pressure for parents. We put pressure on ourselves to “recover” our children “before the window of opportunity closes.” Meaningful progress is not enough if our children still have “the label” and “are still on the Spectrum.” I am sure most of you have heard parents say their child is “recovered” or “not yet recovered” as if there are only two very defined and distinct categories for children with ASD. Whatever therapy we believe in, we need to detach ourselves from the emotional baggage that these phrases carry. When asked about “recovery” Margaret Baumen, the groundbreaking researcher and one of the most respected neurologists in the field, said that the word was not appropriate because it did not reflect what happens in course of autism, even when considering regression. She also said that the statistics do show hope: about 15% of children with autism will become just about indistinguishable from their peers. That was unheard of even 10 years ago. She also said that 15% of children will not make significant progress no matter how good the intervention (usually due to neurological involvement). The rest of the children are distributed all along the range of progress. Whether one participates in ABA, Floor Time,or the Dan Protocol, whether one believes vaccines or genes caused their child’s autism, there are connotations to the word “recovery” that can become oppressive and unhelpful for families who struggle with autism every day.
Here are 3 reasons we should concentrate on achieving “meaningful progress” rather than “recovery”: •
If 15% of children with autism end up invisible, than the large bulk of children will still need some accommodation (using picture supports; keeping the child out of stimulating environments; help with social interaction). This means that if we use the “recovery” model, all these children failed, all these parents failed. Focusing on meaningful
progress helps us avoid “all or nothing” thinking. •
Recovery implies one acceptable outcome. Barry Prizant, the leading SLP in the autism field, said that after giving parents their child’s autism diagnosis he was most surprised that they asked such strikingly different questions. One mom will ask him, “Will my child ever have friends”; another parent will ask, “Will he ever be able to talk to his brother”; and yet another, “Will he go to college and be able to do meaningful work?” Most parents want their child’s challenges to go away 100% but when the goal is not perfectly achieved, we all have differing values that define achievement for our children. Don’t let the idea that your child has failed to become “100% normal” get in the way of accurately judging life-changing progress. Greenspan says that one of the most consistent achievements in his experience—even with children with severe challenges—
is that children become related to their caregivers.
Define your child’s progress
in your own terms. •
Recovery assumes that the child you have now is different from the one you had at birth and this can put enormous pressure on parents to “restore” the child to what they were. There is pressure to act within a “window of opportunity" before the child becomes five or seven. The most likely situation is that the child will need some support for quite a while. As Greenspan says “Think of this as a marathon, not a sprint.” As most veteran parents know, it takes years to fully acquaint oneself with all the major interventions and techniques. According to the recovery model, you'd better get it right, and quickly. Dr. Steven Gutstein, the creator of RDI, says that one of the most important and constructive things that parents must do after the diagnosis is to get out of “crisis mode.” This is a highly traumatic place to live, and the longer that you are there the more you become emotionally damaged by the stress and pressure. It is difficult to get out of crisis mode if you are trying to achieve recovery in 6 months before the dreaded “opportunity window” closes. Parents get so hyper-focused, all resources, emotional, financial go to defeating autsm, that everything else falls to the wayside because they have only a certain amount of time to save their child’s life. Get out of crisis mode
and prepare for a marathon not a sprint.
• • •
Progress from a DIR Perspective Autism is treatable Progress occurs over time; a quick, complete breakthrough is not the usual experience; Be ready for the long haul and for incremental but often meaningful progress