People with developmental delays are increasing in number. Our societal response to integrating these people with dignity and compassion is critical to the welfare of all of us. But a society doesn’t respond. The individuals in a society respond. And that is how we move the needle so that change is effected. Everyone should have a cause that they care about and work for.
Why autism? There are many reasons to get involved in solving problems in our world. When we pick a cause, most of us pick what we do when it affects us or someone we know or love. Chances are you know someone who has a family member with autism. But if you don’t, or don’t know that you do (so many are “shamed” to admit that their family member is not “normal/typical”), then you need to wake up to the reality that caring for this population is going to directly and significantly impact your life, no matter what you do.
Why now? Autism is increasing. It’s cause is unknown. That means it is likely to continue to affect greater numbers of people. Time is of the essence. And that means you need to think how you are going to make an impact now.
Take your pick: Political action, personal involvement, public policy, pony up with the money.
Political action starts with getting to the right people to make changes. Choose the organization that resonates with you. Do you want to work with the local autism society? Directories by state are available through the Autism Society. How about create a stir about the “waiting time” (also known as improved access we were hopeful for with the Accountable Care Act) at the medical institution in your area? A waiting time for a diagnostic evaluation of 2-3 months is unacceptable! Can you help create a screening program of supervised pediatric nurse practitioners to start the intake process within one week and triage higher and lower risk children, provide parents with materials and start the process for services? Demand an expanded panel of physicians who can diagnose children with autism through your insurance carrier. Early intervention is critical to better outcomes; even one month delay is too long in my book.
Personal involvement means directly helping families who deal with an autistic child every day. One or two hours of care-giving a week by a few members of your book club or tennis league to a mother or father who cannot get out of the house to do the food shopping or take an exercise class. Maybe invite the child and parents on an outing with your family–somewhere that fits everyone’s needs. Make personal contact.
Public policy takes advocacy to a whole new level. Getting to the right politicians with the right message at the right time is tricky. Incredibly, New York State funding was slashed for those with developmental disabilities. A freeze was put on group homes. And elimination of day programs for adults with autism has been replaced with funding for a football stadium–tens of million of public dollars to aid a private entity. Mounting an organized, focused legislative program that enhances life in the states in which we live requires joining forces with others and getting into the offices of those who create public policy from which the laws derive and our money is thereby spent.
Pony up with the money. Many different ways to create resources to solve any one of the many facets of autism. I had a crazy thought that the “Re-industrialization of America” might be a good way to incorporate many of the higher functioning autistic community with dignity into our workforce. This would need government incentives to private (and government) businesses to look at how jobs are done and how they might be done differently, by people who work differently. An example came to me recently when I was skiing and in the lunch cafeteria. Clearing tables, re-stocking condiments, and checking the trash for when it needed to be emptied was performed by “Mike”, a young man with Down syndrome. I knew his name because it was obvious that the regulars knew Mike and made sure to thank him. He did a great job and did it with dignity and enthusiasm. He was a contributing member of a community.
We can make that happen for many with autism. Awareness is NOT enough. Action is needed. Early diagnosis and treatment. Research for its cause. Helping families now. Getting our political priorities straight and our money spent on the truly needy. What else would you do? Please share your thoughts. Better yet, get involved.