Rising Autism Awareness Means Special Kids Don’t Have to Slip Through the Cracks

blog children fall through cracks
Dr. Drew Rubin

For many years, doctors have delivered a diagnosis of autism as though it is a prison sentence. Parents are made to feel that they will have no option but to care for a child who will never be able to take care of himself.

Parents of kids on the spectrum soon learn that one family’s experiences with autism aren’t reflective of another family’s experiences. Autism can be expressed in a stunning variety of ways. Of course there are many cases that test the patience and will of even the most loving parents. But treatment is improving. Perhaps most importantly, the growing awareness of autism issues has led to some profound shifts in societal attitudes towards autism spectrum disorders.

New Directions Teen with AutismJacob Barnett was 2 years old when he was diagnosed with moderate to severe autism. Doctors said that his non-verbal behaviors would probably persist throughout his lifetime. They said he would probably never learn how to tie his own shoes.

Jacob’s parents had no reasons beyond a parent’s undying love to hope that things would get better. And sure enough, they found no signs of hope or consolation wherever they turned. Therapists visited the Barnett home almost every day. They didn’t seem to be making any progress with Jacob, and worse, Jacob seemed to find working with them to be an absolutely miserable experience.

Still, Barnett’s mother, Kristine, struggled to make a breakthrough. One night when Jacob was 3 1/2 years old, his mother took him to the backyard, where they had a transformative experience. He was rapt, staring up at the stars, staring more deeply than his mother had ever seen him. To her, the stars appeared just the same as they always did, dotted lights that tended to make one more reflective than usual. But to Jacob, it was obvious that something was happening. He didn’t just see stars. He saw a system. He wasn’t just looking at the sky, he was observing our corner of the universe.

Sometimes A Special Child Can See Things That Their Parents Don’t

Therapy remained a struggle for Jacob. It’s true, without the right kind of treatment, many autistic children withdraw even further into themselves. Doctors tell parents that their children will never be communicative, but sometimes therapists, despite the best of intentions, can make the problem worse by using techniques that try to force these unique kids to fit into the same mold as other kids.

Kristine had a different idea. She decided to remove Jacob from therapy. Immediately, he flourished. She took him out of the special ed classes he’d been attending and allowed him to begin working on a self-directed learning plan. He was curious and eager to learn. She took him to a planetarium and he was beyond fascinated. It was clear that Jacob would face struggles, but with access to the right opportunities to learn, he would be able to surpass the expectations of his doctors.

It’s probably worth mentioning at this point that Jacob has a documented IQ of 170. That is 10 points higher than we believe Albert Einstein’s IQ would have been, had it been measured.

Jacob is now a student at Indiana University-Purdue University Indianapolis, where he is studying astrophysics. He’s 14 years old, and on track to earn his Ph.D. in the subject. He tutors other students in calculus and advanced math.

Many parents know that their autistic children have special talents. Jacob’s story would be extraordinary under any circumstances, and this story is obviously not representative of the experiences most parents will have with their children. But it should be an inspiration to keep hope alive, to make sure that you’re able to question whether the right approach is being taken with your child. Whether the limits imposed on your child’s diagnosis are self-fulfilling.

Jacob’s story is highlighted by success because that’s what we want to hear about. But it has to be reiterated that there is no cure for autism. Jacob Barnett still faces many difficulties despite all of his success. Every day is a challenge to overcome his behaviors.

As he progresses toward adulthood, there will be many considerations that will have to be made in order to create an environment that fosters his continued success.

Stories like Jacob’s are an inspiration to all families, not just families of autistic children. But the story also reminds us that we must be prepared to help these special kids whenever we can. And we have to make sure that as their talents blossom, we guide them to successful routines. We must ensure that we are doing everything we can to make sure kids don’t slip the cracks when they are experiencing difficulty. We have a much better understanding now of what autism looks like, how kids behave and what kinds of systems might best suit those behaviors.

But we have to be sure that we are placing just as much of an emphasis on facilitating the transition from childhood to adulthood, so that we don’t create another lost generation of special kids whose potential goes unrealized.

With the right the type of treatment for young adults on the spectrum, such as the work being done at New Directions for Young Adults, we can help these kids meet their natural potential and transition to success.

Jacob’s story will continue to inspire families, as his mother has written a book, entitled The Spark: A Mother’s Story of Nurturing Genius. Jacob’s story will also soon be made into a feature film, ensuring that his story will have an even further reach.