Hurtful Recovery

Although Mr. Mayerson is speaking directly about discussions between groups of parents of autistic children, some of whom are recovered rapidly, some (like my boy) whose progress is much slower, and some who for whatever reasons plateau early and stop, I think the general spirit behind his essay can be generalised into the broader context of all LD’s and similar conditions.

Hurtful Recovery
By Gary Mayerson

Gary Mayerson is a special education attorney in the New York area who launched his own law firm in order to create a practice dedicated to representing children and adolescents diagnosed with autistic spectrum disorders and other disabilities. This was originally published on the ME-List, which is dedicated towards the support of parents running home or school behavioral (ABA) programs.

It is disappointing and most unhelpful to see hurtful words being exchanged about the topic of “recovery.”

To date, my staff and I have now represented hundreds of children who have been diagnosed with one variant or another of an autism spectrum disorder.

Some of our clients are no longer clients, having been completely “declassified.”

That is cause for celebration. A much larger group of our clients are not declassified, but after several years of intensive and quality interventions (virtually always including 1:1 ABA as the “anchor”), they are enjoying good and sometimes extraordinary success in either mainstream or integrated educational settings. That too is cause for celebration, and I should point out that many of the children in this group started out with very significant behaviors and impaired presentments. The next group are children who are not yet in mainstream or integrated settings, but who are making good and meaningful progress and can look forward in the future to less restrictive settings. That too is cause for celebration. The next group are children whose gains are very slow in coming.

Sometimes it takes a year or longer to get a toileting program under control, or to learn to dress and undress independently. But when that happens, or when a child without any language learns to say or understand a word or concept, that too is cause for celebration. It also is cause for celebration when a child who is demonstrably “non-verbal” is able to acquire a functional system of communication, whether by augmentive communication device or otherwise.

Finally, at the polar end of our client base, we have a small handful of adolescents whose behaviors and functioning is at a point where the only appropriate placement is a residential setting. I cannot say that there ever is a “celebration” when someone’s child has to go into a residential setting, even temporarily, but it is a tremendous relief for all concerned when a child with such intensive needs is placed in a quality residential setting.

I tell my staff that recovery or cure is not our litmus test for success and failure. When I think of the word “recovery,” I think of recovery of function, not as a simplistic cure-all. The process and pace of recovering function is different for each and every child. Children who are diagnosed with autism spectrum disorders need to be re-built brick by brick.

Sometimes, the bricks are flying, and sometimes, laying one brick on the day or week in question can be excruciating. A lot depends on the child, but a lot also depends on the quality, intensity and consistency of the child’s program. Since parents are an integral part of any child’s program and progress, it is a given that the parents’ efforts are part of the equation. This is NOT to say, however, that any parent should be “blamed” if their child does not achieve functional recovery any more than a parent should be blamed if their child does not get into an Ivy League school. There are so many factors and dynamics, and parenting is only one component.

For me, the only “failure” is when we have or allow low expectations, or when someone with the power to do so “gives up” on a child. We didn’t know any better 20 or 30 years ago, but there is no excuse for that kind of behavior now.

Parents of children with autism have enough on their plate without passing judgment on the quality of another parent’s parenting, or the extent to which they surmise that parenting has anything to do with the pace or quality of their child’s recovery of function.