I believe, passionately, that individuals with disabilities should have access to any publicly funded services, from education to community-based youth sports. I am not insisting, absurdly, that every activity can be inclusive because some activities exclude all but the most talented. What I do insist on is that opportunities to participate be equal, include the opportunity to fail.
But lately, I have started to encounter parents insisting that children and teens with disabilities participate in activities regardless of individual desire to participate. These parents claim that participation is essential to the development of social skills.
“My daughter would just sit in her room reading about horses if I allowed it,” one parent told me. This parent had enrolled her daughter in youth soccer, dance classes, and other activities. “She needs to learn to deal with people.”
Pushy Parent Syndrome is nothing new. It’s a common problem in upper-middle class neighborhoods. The children are scheduled like little executives. But for children with autism spectrum disorders or other special needs, this isn't merely a problem, it's a potential disaster.
I have half-seriously called my parents “Tiger Mother-lite,” a reference to Battle Hymn of the Tiger Mother by Amy Chua. My parents pushed, and had a “no excuses” approach to trying things, especially those I wanted to try but teachers or doctors said I couldn't possibly do. But, if I found the activity too much, too overwhelming, that wasn't considered the same as quitting. It was a recognition that I tried. Trying was the emphasis — and that meant having the access to try.
My parents were proud when I made honor band in junior high. That was nice. I played in the concert and then never played in public again. Not one more time. I didn't like the other students, any more than I had previously wanted to be Cub Scout or on a baseball team. But, I learned important social lessons. I also learned that I have little tolerance for large groups of children.
Speaking to family autism support groups, I have met teens with ASDs who were nearly suicidal because mom and dad thought their talents should be “shared” with audiences. Can you imagine, even for a moment, how horrible it was for me as a Cub Scout to be around disorganized, loud, stinking (literally), dirty, boys? It was painful. Physically excruciating. Migraines. Palsy attacks. All because I was supposed to be learning to adapt to sensory experiences to “fit in” with others.
When a young girl about 12 told me she would rather die than go to ballet practice, I understood. All too well. I have tried to tell the parents, or more accurately I have tried to ask them, to seek out a family counselor with ASD expertise so they will hear their child’s voice. You don’t know how upset I’ve been by the things preteens and teens on the spectrum tell me. And my duty, my calling or whatever you want to call it as an adult and educator, is to help them talk to their parents, teachers, and counselors so we can prevent real disasters.
Though I did quit band before high school, I still love music. No desire to perform, but I still practice in private. I am glad I learned to read music and play instruments. But, the “social inclusion” was not a positive experience. Private lessons, however, were out of the question for financial reasons. Public school music programs were (at least in my youth) free.
My father never understood my desire to sit alone with books. He probably still doesn’t get it. He’s a social person, and assumes that's normal. He was a good nurse because of this. But, I’m not him. I’m not social.
I’ve been to parent-student groups where the parents just couldn't believe their young teens didn’t want to be little athletes, dancers, musicians, etc. At least, not publicly. The public aspect of a skill or activity often is desired by and for the parent, so the child goes along with it. Path of least resistance.
Ask the child, teen, or adult with special needs how he or she feels about activities. Ask! Don’t assume to know what is either best or most productive. I ended up resenting a lot of things I was forced to do by teachers and support experts. My parents were actually less pushy than the “experts.”
Asking your child about social experiences is not the same as asking and permitting whatever the child desires. It is about not forcing something that can and does make many people feel horrible in ways that apparently cannot be imagined.
I’m not “included” in activities as an adult, though I was in some as a child. Honestly, don’t want to be included in most things — and too many people assume I’m not happy because I like being alone. I felt like childhood was years of torture. Cruel, horrible torture. It took until the end of junior high for me to tell my parents how much I dislike being around my "peers" just to make my family feel good.
Definitely, I was “capable” of some public participation — but hated those moments of life more than words can express. Now, I do what I want, when I want, including very few social situations, usually out of necessity. Much happier not trying to be normal while silently screaming inside (and literally melting down later).
The spectrum of functionality does mean many socially able teens and adults (Asperger’s, PDD-NOS) want social interactions and benefit from them in their view. That’s why asking the child with autism is essential.
It took me a long time to speak up and say what I was thinking and feeling.
I know my parents thought something good was happening. Instead, I was cataloging all the reasons people are to be avoided: they lie, omit, feign emotions, manipulate, etc. I have journals from fourth and fifth grade on human ticks I noticed and set to memory.
Were these valuable lessons? I suppose they were. I studied neurolinguistics and psychology to better comprehend human patterns. I ended up with a doctorate in communication and pedagogy, analyzing the lies people say in public and teaching special needs students the history and “art” of rhetoric for survival. I have zero tolerance for lies — social white lies or serious self-promotional deceptions.
I memorize mico expressions, body language, and linguistic cues. Sure, it is valuable. It’s all about processing interactions as if I am analyzing computer code, spotting the patterns of each persona and situation.
Talking and listening are the best things a parent can do. I cannot stress the value of dialogue enough. It might be exactly what you want to hear, or it might not be. Your child might want inclusion. Or, he or she might not know until it is tried. I found out pretty quickly how I felt. The social world isn’t for me.
Just one person’s view — mine.