I cannot help but have mixed feelings about the media stories rolling across my desk recently, headlines blaring that early intervention for children with autism “appears beneficial” or “can make a difference.” For us autism parents, it’s not news. It’s the rest of the world catching up to what we’ve known for years. Hey world, what took ya so long??? But the awareness is welcome even if tardy.
And along with increased general awareness of the rapid increase in autism comes parents’ amplified awareness of the significance of early intervention. That awareness can spawn intense anxiety in parents of children for whom the diagnosis of autism comes later than toddler or preschool age. Have crucial years of development been irretrievably lost? Will their child be playing catch-up for the rest of his or her days?
Hear this: no. While early intervention is valuable, the lack of it doesn’t preclude a child’s achieving independence, happiness, and a meaningful, productive life as an adult. “Those who speak most of progress measure it by quantity and not by quality,” observed the philosopher George Santayana, reminding us that our journey is long and ripe with opportunity. The following questions and answers on the subject are adapted from my interviews with Summit Series for Parents (SSP), and International Autism Association for Families and Educators (IAAFE).
IAAFE asks: Many families who don’t get an autism diagnosis until their child is six or seven are panicked that they’ve missed that important early intervention window. What advice would you give families who feel they are getting on board late, and feeling like they’ve wasted all this time and there’s nothing that they can do now?
SSP asks: What about those parents who have no diagnosis, but suspect that their child may have autism? What can they do to get an answer?
Ellen answers: Parents must start by formulating their questions in a manner that doesn’t pre-suppose an outcome. Many conditions and factors other than autism can cause a child to exhibit symptoms of sensory dysfunction, language delay, difficulty with social interaction. In the absence of a diagnosis, parents must be able to articulate specific behaviors or characteristics that are of concern, to document over time how, when and where the concerning behavior occurs, detail the interventions they’ve tried and with what degree of success. Keeping a comprehensive record of behavior or characteristic manifestations over a period of weeks or months can often paint a picture clear enough to move forward with targeted therapies or interventions that focus on the child’s specific needs. Those needs may or may not be called autism, but arming ourselves with actionable facts is essential throughout the process of securing services through schools and other public agencies.
The diagnosis that comes after the early-intervention years does not sentence a child to a lifetime of failure and isolation. Caring, skilled and motivated teachers and clinicians abound at every level of child development, and learning does not automatically end at the 18th birthday. I instilled in my children—and modeled—the ideal of life-long learning, and how thrilling it is to know that we never stop acquiring new knowledge and skills, never stop growing.
Parents must strive to abandon unproductive, inaccurate language. The words “late” and “wasted” have no place in our vocabulary because a diagnosis is a combination of factors in a child’s life, whether it comes at age eighteen months or age three or age six or age fifteen. I have a friend whose Asperger’s diagnosis came at age 36. She didn’t think it was too late. She thought it was enlightening and liberating, because it explained aspects of herself that had always puzzled her. Knowledge is always power. We cannot undo what’s already been done, so dwelling on what might have been or what we might have done is an utter waste of energy. Parents of children with autism need all the energy they have to move forward. That’s where they’ll find the answers they seek, in the here and now.
And here’s another thought to ponder. While we generally regard early diagnosis as a good thing, I’m also starting to see—not a lot, but some—instances where families whose children were diagnosed with autism at a very early age but as they child ages, the diagnosis is reconsidered, sometimes retracted. Maybe it’s not autism; maybe it’s something else, anything from ADHD to a learning difference to food allergy or other nutrition-related deficiencies, or developmental delays that turn out to be temporary. This is why I urge parents and teachers to look at the behaviors and the characteristics and think about how we can address that behavior or characteristic without necessarily putting a label on it. Yes, you need the diagnosis to get the services. But in our house, once we had my son’s diagnosis, we almost never used the word autism because we were helping him develop language, helping him tolerate his sensory environment. We were helping him develop his social thinking skills and his social abilities, and helping him with his reading difficulties. We focused on specific concerns; we consulted specialized people (professionals and parents) and took specific steps to tackle those concerns. The word autism rarely came up until my son was much older and needed to name his challenges in order to be able to self-advocate.
It’s a matter of looking at a child’s needs, the components of those needs, and the options for dealing with them in developmentally appropriate ways. Notice I’ve said developmentally appropriate, not age-appropriate. One of the hallmarks of autism is that development can be uneven, whether cognitive, emotional, social or physical. Our teaching efforts must be tailored to the child’s developmental level, which means we throw out all those pediatric charts that say they should be doing this or that at a certain age. Broad benchmarks intended for a general population are irrelevant to our individual child with autism. Respect his or her unique trajectory, knowing that, like every child, he is capable of much more than he is capable of today, and that she is going to grow and develop at her own pace.
“It’s not about doing it in any specific order or in any specific way,” our wise adapted PE teacher told me during Bryce’s grade school years. “Children are going to flourish if they are nurtured and if their way of learning and doing is celebrated.”
© 2011, 2013 Ellen Notbohm www.ellennotbohm.com
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