Day 13: Families

I learned a lot about families with autism in the last few years. I have heard of the struggle that parents face getting the proper accommodations and education plans for their children, the problems they have with family members - and each other - and this is not to mention the trials that the children themselves face when trying to find their way through the "ordinary world". Couples sometimes divorce over the challenges of dealing with an autistic child. Children become envious of the attention their autistic siblings get and jealous of their parents' love. Schools, playgrounds and even a trip to the grocery store are stressful to the families and the child for the undeserved scorn their receive in public from others who misjudge and do not understand.

We have come a long way from the dark ages - not 40 or 50 years ago - when differently-abled people were just locked up, mothers were likened to refigerators, and talent and human life wasted away in institutions while families lived on with dark secrets. But after the exposés on the mental institutions, the work of parents and celebrities to move all children into mainstream education, and the dedication of teachers who want to make a difference, autistic people are now allowed to live full lives - getting education and sometimes even fulfilling jobs and adult lives. I have heard stories like:

• A mother going to meet her autistic son's teachers for the first time, armed to the teeth with a civil-rights lawyer, documentation of her son's condition and well-read on the laws and education procedures needed to help him - only to find that the school is 100% prepared for him and committed to his success.
• Children forming fierce bonds with their autistic siblings, working hard to understand them and help them, ready to scrap with anyone who dare disrespect their brother or sister.
• More and more couples staying together and working together to help their child or children on the spectrum.
• Schoolchildren celebrating and even lionizing their friends on the spectrum.
• Businesses pledging to be autism-friendly for their customers and their employees.

It's important to keep this progress in mind. Many of these successes were wrought out by couples dedicated to doing something to improve their child's lot. Passionate mothers who used the "Captain Crunch" method of persuading their child's evaluators to give them full benefits. Clever fathers with celebrity or political  connections and crafty ways of convincing bureaucrats to pay attention. We cannot rest on these achievements, but we can use the as inspiration to build further and give succeeding generations an even better shot. The alternative is not acceptable.

I've read about these stories in many books in the last few years, such as:

Neurotribes by Steve Silberman

In A Different Key by Jon Donovan and Caren Zucker

Uniquely Human by Barry Prizant

Look Me In the Eye by John Elder Robison