Expert Advice: Bridging the Gap Between Learning and Living
The human story shifts when people resist continuing in a method that is not working for them or their loved ones. Our current approach to educating individuals with Autism Spectrum Disorder is not working. Only when families of loved ones with autism begin to resist this approach, while identifying a better alternative, will the story will shift.
When I was 19 years old, during my earliest teaching experience as an assistant for children with autism, I first heard Temple Grandin speak. “Don’t feel bad for us because we don’t want a white picket fence and 2.5 kids like you do,” I vividly remember her sharing in a high school auditorium. “We’re not like you, but we’re fine.” Do teach us what we will need to function in the world, she continued. And help kids discover their talents and strengths; this will be their future.
The focus for the rest of my career shifted. It was not at all about what I wanted students to learn: it was about what they needed and deserved in order to live productive, meaningful lives, which is the application of the federal law for special education.
Several years later, I sat in the living room of my best friend from high school, watching her son repeatedly cover himself with a blanket, not wanting to be found. He was looking past his mother without making eye contact, not responding to the doorbell ringing or someone entering the room. Marco was 18 months old. I slowly shared with his mother that I thought he had autism. She began to cry. Immediately, a wave of initial concerns hit her. How would he grow up? What would he learn? Would he be able to take care of himself as an adult? A month later, Marco was diagnosed with autism.
We developed a home-based program for him to supplement the minimal amount of hours Early Intervention provided. I trained his family members, mainly his mother, to systematically interact with him and build foundational skills for learning and being in a relationship. Honestly, I did not know how much Marco would change or how much he would learn to accommodate to the conditions around him—I only believed that he could. Fortunately, his parents trusted enough to believe the same.
Marco indeed made progress. He entered preschool with a full repertoire of skills and acceptance of conditions, which is the foundation we all need for success. However, with little recognition of the incredible commitment the family had made to bring Marco to that critical place of readiness, the school district offered him a classroom that was based on a newly marketed methodology. The administrative team was sold on a programmatic approach based on the product it promised, not the children for whom they were responsible for educating. They did not have the mindset or interest to recognize where Marco was or what he needed to continue to learn successfully. Because it was such a critical time in his education, I advised the family to not accept the proposed program as appropriate education for him. Marco’s family could not risk his regression to an ineffective system. They continued teaching him at home until new options were available for kindergarten.
Several more challenges and differences in holding a vision for Marco continued throughout his schooling, and each time, his mother firmly, calmly, and professionally shared what he needed and why. Marco is now 14 years old. He attends a traditional middle school, with support. Although he has severe apraxia (speech disorder), he has learned the importance of communication and routinely uses multiple modalities to express his desires and questions. He accepts conditions. He prepares his lunch, makes his bed, participates in grocery shopping, and does the laundry. He is involved in yoga and chorus, and his mother has arranged for him to begin volunteering at the local hospital for an early-simulated work experience. His school district had no intention of beginning to introduce Marco to these realities of life until just prior to his graduation.
His mother is still leading his educational team in decision-making. If she did not hold the vision for, and model, a productive and meaningful life for Marco, he would not be where he is today, or preparing for a richer future. Parents must lead.
The “Cliff of Services,” as youth with autism become adults with autism, is a pervasive and critical issue for all parents. However, I do not believe the issue will not be solved with more services, or even more money. The crippling factor for youth and young adults with autism is the mindset held for them at various stages of their education. Expectations are held low academically, socially, and behaviorally. And standardized tests and curricula geared at preparation for them continue to stand in the way of recognizing and developing individuals’ strengths and talents.
When the educational system has failed to prepare students for productive and meaningful futures, we cannot then blame those holding the future. They have only inherited the problem.
As I continue to share my perspective of Bridging the Gap Between Learning and Living, I often find myself speaking to a room full of parents. Even though the task will be that of society as a whole, I believe the bridge will be built through family members. People like Marco’s mother will grow in numbers, and their insistence for a better recognition of who their children are—and what they deserve as a quality of life—will move the story forward for people with autism and their families.
How can you begin to build the bridge? Here are some ideas to start:
- See the Possibilities, Not the Problems
As challenging as moments can be with individuals with autism, we must find ways to see past the difficulty and appreciate their talents and specialties. Whether your child has an excellent memory, good physical coordination, or is artistic or musically inclined, your recognition of that can begin to focus others’ attention, namely educators, toward it. Once focused, possibilities are endless.
- Restricted Interests Are Interests
Often, parents get nervous about—or exhausted from—how much their child is interested in one thing. Yet, perhaps some of the greatest contributions to humanity have come from an over-focus on one thing, such as electricity or the invention of air travel. Instead of limiting or putting conditions on your child’s intense interest, reconsider and instead help educators come up with ways to expand or integrate his/her interest into learning and social interactions.
- Give More, Not Less
Sometimes there is a tendency to give fewer demands, less boundaries, and simplified information to children with autism. Often though, what they need is more. Because their sensory processing and competing thoughts affects their access or acceptance to conditions, find ways to offer more for them to understand the world around them and their part in it. Give them context and explain how and why we do what we do. Share these approaches with their educators.
- Go Out into the Real World
As daunting as it seems, children need a great amount of exposure to everyday scenarios early on in life. This is where they connect the purposes for what they are learning, from simple, basic communication to the complex reading of a public bus schedule. By involving them early on in all of these scenes and processes, they become desensitized and are better able to practice later on their own. Create the example for educators to adopt community-based learning.
- Build Relationship with Educators
The Bridging the Gap model is about creating a community of support for individuals with autism early on, instead of just as they are entering adulthood. Preparation for the future must include building a relationship with children’s educators and educational support team, so that you can share with and learn from each other. As key players in your children’s development, meeting with these professionals a few times per year is not enough to chart a course of success for your children. Volunteer when you can at school functions, invite them to your child’s birthday party, etc. Help them see the other side of their students’ lives, realizing it is only one future you are creating together.
There are no shortcuts to change for any of us. We need to slowly, persistently, and patiently create the new patterns we wish to live out. The same is true for individuals with autism. While they may require the additional support to do so, the process is one of a human story: do more of what’s working, and less of what’s not. Every day. Until it becomes your new reality.
I believe individuals with autism are waiting for a new reality, one that works with them, not against them. They are waiting to be understood and to understand. They are not waiting for a better law or more funding. They are waiting to be dignified as individuals from an early age and to be shown the ways toward productive and meaningful futures.
This article was featured in Issue 53 – Working Toward The Future