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