Day 20: One Thing People Don't Understand

Autism is a life-long condition. It cannot be cured. The misunderstandings of this concept run a gamut from the ignorant, dangerous and unfathomable actions of parents making their children drink bleach to cure them of autism to the more well intentioned yet ill-informed people hiring people with autism and thinking their work is done at that step.

Early diagnosis and intervention are necessary steps to help children with autism. The sooner the problem can be identified and addressed, the sooner the children can get the help they need to function on their own and succeed in school, work and society after that. Failure to do so takes us back to the days when autistic children were locked up in asylums and left to rot, unable to reach their potential and have meaningful lives. Recognizing that these children had skills and could communicate if we dealt with them on their own terms enabled teachers and parents to teach them ife skills as well as they could any other child.

Even as we mainstream these children in our schools, more work is needed. Teachers and students past the pre-school and elementary grades need to learn more about their different but not less peers to prevent bullying and ostracizing, which can lead to autistic students become depressed, tuning out, and losing ground. After public school, transitional help is needed in colleges and labor to continue the work to transition them successfully to jobs and independent living. When hired, managers cannot stop the work they did in accommodating the candidates in hiring - simple, ongoing supports are needed in the work place, management and coworker training is crucial to retention, and plans need to be put in place for future hires and management changes. Every parent of an autistic child knows this and worries late at night: What will my child do when I am too old to care for them or when I die?

Autism awareness and acceptance is doing much to change this. Nonprofits work to train retailers and other businesses to be autism-friendly. Popular television shows help by showing the unique talents and challenges of working or befriending people with autism. Hiring programs are learning more each day about how to retain talented and loyal persons on the spectrum. But more work and vigilance are needed to finish the job of integrating autistic people into society and ensuring the received wisdom and lessons from generations before is not lost.

People went through herculean efforts to help Steven Hawking to stay alive and productive. He required a personal nurse every day to help him live, a team of crafty people to devise the means for him to communicate, and special accommodations for him at every step of his movement around the world or in his home town. Consider the benefits we received from that, and ask if it's worth far simpler measures to help millions of other bright, hard-working people become productive members of society, living independent and fulfilling lives. These actions make better managers and co-workers, improve company morale, strengthen communities, cost far less to society than warehousing people, and are the humane and just alternative to the practices our civilization enacted in the past, some far too abhorrent to name here.

One of my favorite songs by John Cougar Mellencamp is called "Check It Out" in which he sings,

A million young poets
screaming out their words
maybe some day those words will be heard
by future generations
riding on the highways that we built.
I hope they have a better understanding.

I, too, hope that the work we are doing creates a better world and a better understanding that is not lost.