Throw Away The Yardstick or The Blessing of the Diagnosis

By Erika Drezner, LCSW

Many of us started this journey through the now famous metaphor of visiting Holland. If you haven’t read Emily Perl Kingsley’s brilliant essay on having a child with special needs, read it here. In it, she compares getting ready to have a baby to planning a trip to Italy—only expectant parents could think of parenting as a trip to one of the most beautiful places on the planet, how naïve we were! But having a child with special needs, according to Kingsley, is like landing in Holland. You start off with grief for the dream you lost, but you end up appreciating “the very special, the very lovely things … about Holland.”
Kingsley is smart; she reminds us that we shouldn’t spend our lives mourning the loss of our “Italian Dream,” and while she doesn’t say it exactly this way, she makes one thing clear—you can see Italy from Holland, even on foggy days. What I mean is that even once we get past that initial stage of mourning and come to accept, to normalize Asperger/Autism (ASD),  the rest of the world doesn’t go away.

What I want to talk about here is how we live in the world and help our children do the same.
I don’t mean to breeze right past that initial mourning stage. Many parents come to AANE in the throes of sadness and sometimes panic. Receiving a diagnosis can feel devastating. Most parents admit that they were aware that there was “something wrong” or “different” about their child, but believed that is was a temporary thing, a developmental hiccup. Diagnosis takes that belief away. Parents are faced with the prospect of a lifelong condition, and what follows is a mountain of uncertainty. What will my child’s life look like? Will he be able to go to college? to support herself? As parents we want prognoses, we want certainty. But folks, I am here to tell you that nobody has certainty when it comes to children. Other people may think they know what to expect, but they don’t really—they just don’t know it yet.
This is the benefit of diagnosis. As parents of kids with ASD, we know things that other parents won’t figure out for years. And some of them—much to the detriment of their kids—will never figure out. We learn early that we don’t own our kids’ lives, we don’t write their stories. They may not turn out like us and they very likely won’t turn out anything like the fantasy child that lives in our head. And that is a good thing.
It is not difficult to see that most contemporary parents exist in a state of anxiety about outcomes. If the documentary “Race to Nowhere” plays in your community, I recommend that you go and see it. It calls into question the excessive pressure society places on children and teens. Today’s kids receive more homework, participate in more extracurricular activities, than kids of any previous generation—and many are collapsing under the stress created by these ramped up expectations. (The film provides a number of reasons for this, one of which is competitive college admissions.)
It’s not hard to see that parental anxiety about the future is fueling a lot of these unhealthy trends. Parents push their kids relentlessly to guarantee a vision of the future. Many kids are miserable and stressed out. The present is sacrificed to the future. And as a consequence, no one is enjoying the present. What kind of lesson is that? It seems that what is left out of the equation is personal happiness. Children are not taught to make decisions that will suit them or make them happy, they are taught to follow a path that—as the movie’s title suggests—leads nowhere.
Enter the kid on the autism spectrum into this equation. We know our kids are different and that their needs are different. But how do we remain mindful of this as we guide them? It can be so easy to get caught up in the race, to wish that you were in Italy—to want a moment of slurping up pasta in the shadow of the Roman Coliseum. The temptation to compare your child unfavorably to his/her peers can rise up when you least expect it. People love to talk about their children—that is natural. However, talking often becomes bragging and, inevitably, comparing. You may find yourself listening to your neighbor talking about how difficult it is to manage her son playing three sports a season when your child—who is the same age—has not mastered tying his shoes. It can raise your level of anxiety and make you feel like a bad parent.
This is the moment when many parents hit the panic button and decide it is time for their kids to “catch up.” But this is the worst time to start making decisions. Nobody makes good decisions when they are anxious. At these moments, it is imperative that we distinguish between our own feelings and our kids’ needs. After the moment of panic has passed, we can decide if it is the right time for a change. Is your kid ready to take on a new challenge or is his plate currently so full that he can’t handle one more thing? Is the cause of the anxiety something that is actually important? Is it important to your child? To her future? Or are we pushing something because it is part of our fantasy for our child or because it is expected by society at large?
Instead of pressing the panic button, here are few things that I have found helpful:

Remember the 2/3rds rule. Asperger/Autism (ASD) is a developmental disorder; our kids seem younger because they are younger, developmentally. Your 15 year-old may really be a 12 year-old in many ways. If we remind ourselves that it is normal for our kids to do things at their own pace and in their own way, we can relieve ourselves of some of the anxiety we feel.

There’s no law that says you have to start driving at 16 or go to college at 18. Certain expectations are so ubiquitous that we forget that they aren’t really requirements. As parents of quirky kids, we need to remind ourselves not to get sucked into the assumptions that govern so much of life. Everyone launches in his own time and in her own way. There are lots of paths to travel toward adulthood.

Slow and Steady wins the race. Letting our kids do things on their own timeline is actually better for them. This approach allows them to break things into smaller, more manageable parts. As one adult with ASD said of his teen and young adult years, “I gradually took on more and more responsibility for my own welfare. Because it was gradual, I never felt overwhelmed.”

Development does not stop at 18, 21—or 40! Anyone who has taken Psychology 101 has been taught about adult development, and yet it is easy to forget that it exists. For most of us, it seems that development slows considerably in adulthood, but that doesn’t seem to be the case for our adults with ASD. Working at AANE, I have gotten to know many adults on the spectrum who are continuing to grapple with issues that are typically considered developmental tasks of adolescence. I have seen them make progress, grow and change. They are some of the most interesting and engaging people I know. I admire them greatly. They continue to work hard to make sense of a world that is innately confusing to them.


The fact is that we live with these expectations, this invisible yardstick that measures everyone’s progress. Picture a yardstick; it is a straight line, and the numbers all go up in the same direction. So linear, so straight—so boring! If we are not careful, it can be a stick we use to metaphorically beat up on ourselves and our kids.
When you feel yourself falling into this mindset, picture a yardstick and imagine yourself breaking over your knee and throwing the pieces away. And if that’s not enough to make you feel better, pick up the phone and call AANE or schedule an AANE parent coaching session. You are not alone!