Last night, Daniel’s progress report finally made it into my hands… several weeks late. It was late because Daniel didn’t want me to see it. The news wasn’t all bad. In three classes his grade had actually improved. However, in one class his grade had dropped 16%, from a solid A to a high C. In his math class, his grade had fallen another 3% finally placing him at a D. It was discouraging. Some days it seems like no matter how much I work and try to help Daniel, his struggles are never ending.
Then today, I read “Autism and Learned Helplessness” at www.autismathomeseries.com. In this post, Mr. Stillman discusses them impact our view and subsequently treat our special needs child has on the self-image and mental health of our child. It was both convicting and inspiring.
“I’m a strong proponent of the principle “prevention instead of intervention.” Not only do we wish to educate, support, accept and integrate people with autism fully and as early as possible, we also need to practice “prevention instead of intervention” with parents, caregivers, educators, law enforcement and the medical community. What does this mean? In the midst of applying a maze of treatments, therapies, medications and methodologies, it is imperative that we perceive the autistic one as capable and competent.
“We must perceive the autistic one as capable and competent.” When confronted with the same problem with my son for the 3 millionth time, it is easy to mentally dismiss him a “broken”.
I would not ever say “broken” out loud. I immediately feel so guilty that such a frustrated thought would cross my brain. However, it is a symptom of a sick perspective. A perspective that has to be constantly fought when faced with the daily struggle of raising a child on the spectrum.
As Mr. Stillman points out there are several ways to deal with this struggle. Many are unhealthy.
In my work as a consultant, I often observe what borders on psychological abuse in the manner by which parents, grandparents, educators, therapists, doctors and others describe the one with autism in front of them! To some, the child is a patient…a subject…a “behavior problem”…a thing.
Being emotionally attached to a person who struggles is emotionally draining. It is very logical, therefore, and sometimes even necessary to distance your emotions in order to be objective. Doctors often struggle with a conflict of interest if they are emotionally involved with a patient. As a parent to a special needs child, trying to protect myself emotionally is a delicate balance. At one extreme is a kind of callousness described above where I begin to make the child subhuman by acting as though they are unaware or not able to understand as I describe the negative aspects of their struggle in front of them. This is would be depressing to any individual. In those types of circumstances, it is surprising that the child ever does anything. Lapsing into learned helplessness is an easy choice.
Additionally, when we don’t presume intellect and perceive people with autism as perpetual children, we lower our expectations of them instead of raising the bar and challenging their intellect.
Struggling to determine the correct height to set my expectations for my Aspie son is another daily struggle. I do not want to set the bar so high that it is unreasonable and discouraging to my son. However, I firmly believe that challenging my child is one of the best ways to promote developmental progress. As I saw last night, this can sometimes be exhausting. Between the emotional pain of watching a child I love struggle so hard for milestones that others dismiss as minor and the mental exhaustion of trying to find new ways to challenge and recognize successes, I can understand why parents fall into the safer place of over-protection. Again, learned helplessness along with making trouble as a diversion becomes the path over-protection creates for our child.
“There have been many famed individuals and creative thinkers who have made significant contributions to our culture and who have been rumored to be on the autism spectrum (likely with Asperger’s), Charles Schultz, Thomas Jefferson, Vincent Van Gogh, Alfred Hitchcock and Bill Gates among them. The argument may be that they are all indeed “high-functioning.” But in autism, the perception of “high” and “low” functioning is limited only to the physical if we presume the cerebral intact.“
I have been writing about a presentation I attended. The speaker was James Williams. He was diagnosed as a “Low functioning” autistic when he was a small child. Today, he is a twice published author. He travels around the country, alone, speaking at conferences. I have learned with him the truth of this quote. Low and high functioning in autism are very perception dependent. While not every Autistic child will be able to function as James can, I believe that all autistic children deserve no less than we would give our Neurotypical child, the expectation and support to reach their full potential, whatever that potential is.
This is not an easy proposition. As Mr. Stillman points out, many of the standards we use to measure success for Nuerotypicals do not apply to people on the spectrum. Because of this, I agree with Mr. Stillman when he says,
“This will require us to think in a manner that is inspired and to re-envision employment opportunities that will build upon individuals’ unique areas of expertise; focus upon interesting, detail-oriented work; identify quiet, gentle environments; not be deadine-specific; and use virtual online employment or self-employment options.”
Who is going to be at the forefront of advocating for this kind of social change. It has to be us, the parents, teachers and aids. As we discover how to help the creativity in our children blossom, we can teach the world around us how much our children have to offer. Not only how much they have to offer but how with reasonable changes, that creativity is readily available. We also can teach our children to better self advocate.
When faced with discouragement at continued struggles, I am learning to step back, re-evaluate and see if there is a new way to motivate, a new tool to offer my child, a tweak to the current process that may unlock another door for Daniel. I will reach out again to teachers to get input and give them ideas. I will re-address the struggle with Daniel with renewed compassion, balanced with continued expectations.
Helen Keller presented outwardly as among the most severely impaired yet she was brilliant for what she gained the world. Gathering together in support, seeking communication alternatives to speech, and making compassionate accommodations for each individual with autism—regardless of what their level of functioning purports to be—is not only necessary, it’s imperative. It’s what will distinguish progressive, innovative productivity from learned helplessness.
With that example, I reminded it was Helen’s parents hiring a tutor for her and her tutor’s persistent dedication and belief in Helen’s abilities that changed the world. We as parents, teachers and aids have that same opportunity – to help create a society where both our children and our world benefits from our work bridging the gap. It is hard work but it is work that is worth doing and only we can do it.