Living Well With Autism

By Linda Andron-Ostrow

Living well with autism

Picture a 3 year old girl who does who not speak, does not have any idea how to play, shows all the classic signs of autism and a daunting difficulty with any uncertainty. Then, a 7 year old who has her first birthday party with classmates. Later, a 10 year old  in fifth grade who is fades out her one-on-one by winter break and succeeds in a regular class. And now, imagine this buddy tween, a 12 year old who is able to triumph in middle school without any support, has friends and participates in extra-curricular activities.

So when she goes to participate in a study we are all certain that she will no longer test as autistic. But in fact the evaluators still see the features: somewhat formal speech, somewhat inconsistent eye contact, and limited imagination.

When her parents read the report they confirm the things the evaluator saw, but just see it as who she is at this point in her life. Did the evaluators see a young person under a great deal of stress from long testing and traumatic blood work? Did the particular testing module that they used affect the results? Did her history affect the current results? These are definitely questions to ask.

But the more important question is of what significance is the label or lack thereof? What is our goal in living and working with children on the spectrum? Are we reaching to eliminate all things that might be considered symptoms of autism, but at the same time may be characteristics of a young person who is thriving and growing every day? A young person who is successfully mastering the challenges of life? A young person who may be getting through middle school in some ways much more successfully than her neurotypical peers?

Those involved in the neuro-diversity movement would absolutely say that this is a young lady who represents the wide span of diversity that comprises autism. They would celebrate her differences and cheer for her overcoming her anxieties. Those of the neuro-diversity movement would see her as a person with autism, who is living her life very successfully.

In either case, it is a statement that our goals perhaps should not be to eliminate anything, but rather to empower our young people and their families to live rich and full lives with whatever characteristics evaluators still see as “autistic”.

Perhaps our goal should be the same as it is for all of humanity, to be resilient in the face of challenge, self-compassionate and compassionate to others, anxious to embrace novelty with all it’s in certainty, and comfortable with everyone.