A LETTER TO NEWLY DIAGNOSED PARENTS & FAMILIES



Dear Travelers,


Welcome aboard. You are at the beginning of a lifelong journey. You may feel worried about taking your first steps, but just know that your path is wide and you won’t fall off. You may see part of the road ahead, and may feel exhausted before you even start. Your journey may take its share of unexpected twists and turns. You may have to climb harder than you ever thought possible. You will also see your share of glorious vistas and landmarks along the way. Other parents are traveling their own paths; yours may sometimes be harder, easier, or just different.


As a clinician, I often share the difficult news with parents and caregivers that their loved one has autism or is “on the spectrum.” Along with this news, I often field questions about kiddos’ futures, severity, or “levels of functioning.” When answering these questions, I often feel like I am on the outside of a window looking in. I’ve never been a parent, much less a parent of a child who has autism. Although I have never been on the “inside,” I have 20 years of experience with the population. From my standpoint, “inside” is a pretty amazing place! Although I can’t travel the whole journey with you, I can be a guide for the first part of it, and you are welcome to check-in with me at any point along the way.


It took me a long time to earn my tour-guide badge. My experience with humans with autism started when I was in graduate school. One of the first children I ever assessed had a diagnosis of autism and I remembered being so intrigued by his way of looking at the world and his ability to notice details that escaped my eyes. Experiences like this one led me to devote my training to learning all about autism and incidental teaching, a subtype of behavioral therapy with a heavy emphasis on play. I learned about how to use interests to teach skills; I can remember integrating social-skills training into Uno games and using blocks to model conversational turn-taking.


One of the first children I ever assessed had a diagnosis of autism and I remembered being so intrigued by his way of looking at the world and his ability to notice details that escaped my eyes.

Although I’ve never travelled the complete path myself, I have had many opportunities to observe the journey. Over the years, I have met with many parents, completed many assessments, helped college students through challenging social situations, led several groups, and consulted with many schools/districts. I have even conducted marriage counseling for adults who self identify as autistic. Because of the diversity of my clinical experience, I feel that I have a unique perspective into the ways individuals with autism grow and develop over a lifetime. It is with that perspective that I can provide insights to parents who have legitimate concerns about their kiddos’ development and futures.


Here are a few of the lessons I have learned that may be helpful on your journey:


1) GET AN EARLY BOOST

As with many epic journeys, the first step is often the hardest. One thing we know about young humans with autism is that they (like all children) are more susceptible to intervention at earlier ages. Delaying intervention is often like approaching a mountain from a side with a sheer cliff. Early support, on the other hand, is like approaching that same mountain on a side with a staircase and a handrail.


One of the core challenges associated with autism is socialization. When we think about socialization over the lifespan, complexity and difficulty tend to grow exponentially rather than linearly. There is no better example of this phenomenon than your average middle school. Entering six graders are often talking about recess and the latest cartoons. Eighth graders are often talking about dating and popularity. Socialization is not the only skill area that changes this way; we see similar changes in academics and in communication. The world becomes increasingly complex and abstract as we get older, which may explain why so many individuals with autism-spectrum disorder (ASD) get “detected” in late elementary and middle school. Essentially, when children fall behind, it is often hard for them to “catch up” because the requirements keep rising faster than they can grow. Children who are already struggling with engagement at age 2 will likely fall further and further behind without intervention, whereas, an early “boost” can help kiddos “catch up,” stay even with, or even overcome their peers.


Current research also supports another argument: due to neuroplasticity (the ability for the neurons in the brain to form new connections and optimize current ones), younger children tend to be more responsive to interventions than older children. Early identification of “at-risk” kiddos and early detection of autism-related difficulties make it possible to teach critical skills when the brain is most susceptible to learning.


2) ENJOY THE JOURNEY AND THE MINI-DESTINATIONS ALONG THE WAY

Although it is challenging for parents and families to learn about an initial diagnosis, their paths are still “wide open.” Young humans with autism have so much potential that its limit really is the imagination. Individuals with autism earn fantastic grades in school, graduate high school/college, reach amazing levels of success in their careers, and find the partners of their dreams on a daily basis. Not only that, but due to their unique strengths, autistic individuals also often have unique perspectives leading to innovations that have defied the bounds of art, science, and technology. I have seen children, adolescents, and adults with autism make huge gains in relatively short periods of time with the right types of help/intervention. Although their paths may not be traditional and they may take many twists and turns, people with autism can find success and happiness on their own terms. As I am writing this, I just learned that a young adult I have worked with earned an associates degree in film production; all the while, he maintained his own apartment and made tons of friends. These feats were by no means easy, but do we ever really appreciate the things in life that are easy?


Current research also supports another argument: due to neuroplasticity, younger children tend to be more responsive to interventions than older children.

3) IT WON'T ALWAYS BE THIS HARD

When I meet with parents for diagnostic feedback, I often answer questions about prognosis and levels of functioning. Just like all of us, children with autism are constantly growing and developing. Just as we can’t take any 2-year-old human and predict what will happen, we can’t make these types of predictions about young children with autism. I can and do make recommendations focused on increasing the likelihood of skill acquisition and language development based on strategies supported by research. However, every kiddo, situation, and journey is different and there is no way to predict exactly what will happen. One thing I can say with certainty is that, like everyone else, children and adults with autism have high points and low points in their lives. I mentioned the adult who received a degree, and for every one like him, I’ve seen another adult withdraw or fail out of college. These failures are not something to obsess over or even regret. They are signs that we need to find new motivation, use a different set of tools (like a walking stick or climbing apparatus), find a different path, or set a different goal. Humans with autism experience the same roller coaster rides that everyone else experiences. It’s unrealistic to expect that everything will go perfectly; likewise, it is unrealistic to expect that everything will be awful.