Children with Autism and Optimal Outcomes

ryan then and now

Ryan then and now – as a young boy in his school picture and in his ID badge for work

The Wall Street Journal yesterday carried an article, “Who can outgrow or recover from autism?” The Journal was reporting on a study conducted by Deborah Fein, Ph. D., of the University of Connecticut, Storrs. I’m sure that every parent of a child with autism quickly read the article in hopes of learning what treatment is the key to solving this puzzle.

I thought I would provide some information on the new study and my thoughts. This study is the first of a series of autism studies on optimal outcomes sponsored by NIMH.

The study was small, consisting of 34 children 8-21 years of age who had been diagnosed with autism by age 5 by an autism specialist or a trained doctor. These students were enrolled in regular education classes, did not require any special education related services and no longer appeared to have the symptoms of autism. For comparison, the researchers included 44 individuals with high functioning autism and 34 typically developing peers. The researchers first examined the students’ initial evaluations to confirm a diagnosis of autism. As a result of the review, researchers found that children in the optimal outcome group had milder social deficits and slightly higher IQs than the high functioning autism group. However, it’s important to note that at the time of diagnosis, their communication issues and repetitive behaviors were just as severe.

Secondly, all participants underwent a full assessment. Overall, the optimal outcome group scored in line with their typical peers and significantly better than the group with high functioning autism.

The investigators also collected additional information, including the various therapies the children received, psychiatric evaluations and brain imaging.

Dr. Fein suggests, based on previous studies, that between 10-20% of children diagnosed with autism may have optimal outcomes. Over the years, I have seen some children who were diagnosed with autism by age 2, received intense ABA treatment (40 hours+ per week) and speech therapy, and had parents passionately involved, make significant improvement so that at age 5, they enter public or private schools without requiring special education services.  However, I have seen many more children who, even with the same treatment regime, still require special education services when they enter school.

Some additional thoughts include:

  • Most, if not all, parents would like their child to “outgrow” autism.
  • What truly is an optimal outcome? Some of our graduates have gone on to college, others have joined the workforce following graduation and many have moved out of their parents’ homes and are living independently or semi-independently in the community.  My son Ryan is participating in a training program in the maintenance and landscaping at the Barber National Institute. I consider these all optimal outcomes.
  • Parents will be the first to feel guilty that they did not pursue a treatment that results in an optimal outcome. We must be careful not to let that happen.
  • Further research needs to identify which treatments will be most successful with the various subgroups of children on the spectrum.

Parenting a child with autism is a journey. We celebrate our successes, and when faced with challenges, we continue to move forward. Each of us is working to make dreams come true for our child. And yes, those dreams will look different for each of our children.

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