I've been catching the stories online about the latest CDC numbers for autism
: 1 in 88 children; 1 in 54 boys. In some regions of the United States, the numbers are even more alarming, such as 1 in 47 children in Utah. Many people seem to think that better detection is responsible for a big portion of these higher numbers.
I agree that better diagnosis and detection are boosting the numbers, but that does not address the initial cause of autism. It seems logical to me that the growth in the number of children diagnosed with autism would not be so steadily climbing without some other underlying causes, such as environmental factors or genetic factors.
My own personal belief is that there is not one answer, but several, and that it may take one cause or a combination of them to cause autism. I also think that modern living and its byproducts are somehow causing more frequent occurrences of autism.
These are guesses, based on personal observation and reflection. What we all need is scientific research to track down causes and patterns. I'd love for parents to be partners in this, because many of us have been living with autism longer than researchers have studied it.
Think about how many children are on a playground, a classroom, a school, in your family. Think about schools being required to provide services while their budgets are slashed and training is reduced. Think 10 years in the future, if the numbers continue to increase. How many of these children will be autistic? Think of what happens when autistic children turn 18, and are largely cut off from services and resources. How well prepared will they be? We as a society need to care NOW. Parents need more information, and better resources to prepare their children for as full and independent a life as possible.
We need better supports and services, because the best practice right now to address autism is early detection and start of therapies and treatments. Not only are they effective, but they also reduce the need for services later. I don't think that parents who have navigated bureaucratic processes want to continue it for a lifetime. I think it's pretty safe to say we like our kids, need as few therapies and interventions as possible. Also, trained parents can be an awesome component in their child's treatment. We the parents need hope as we grapple with rising inflation, foreclosures, job losses, marital stress, social isolation, cuts to schools and regional center programs, and denial of services by our health care coverage. Not to mention bickering politicians in an election year.
What can we as parents do?
- Continue to advocate for services for ourselves and children.
- Network for successful therapies and resources.
- Write and call our elected official and continue to let them know we are a growing segment of their constituency that has needs and wants to one day be self-supporting and independent.
- Raise awareness by speaking up and out about autism and what it mans to you and your family.
- Support each other with in-person and online support groups and activities.
- Love our families and laugh as much as possible; smiling is good too.
- Set goals and learn from what does or does not work; allow space for growth and change.
- Don't be afraid to tell providers and educators what you need for yourself and your children. I have been amazed how powerful a clear statement of needs, reinforced with polite insistence, can be.
If you are not a parent of a child on the spectrum, and have been reading the headlines and wondering about it, please consider becoming more informed and helping. There is certainly a need for it!
- If you know someone who has a family member who is autistic, talk with them about it. Listen to them. Think about what you might be able to do and then act as you can.
- Make a contribution to an organization that helps with autism. Autism Speaks is a very good voice for the autism community, and raises money for more research.
- Support local non-profits, who are not only front-line providers, but have had their funding majorly slashed. If you look at the right column of this blog, you sill see the non-profits who help us. Here is a more generic list: Regional Centers, Easter Seals, Cerebral Palsy, Scottish Rite, and your local public schools.
- For school-aged children, the two biggest providers of services are the Regional Centers and the public schools system, and their budgets have been decimated by state budget cuts and are the first to be targeted every year for subsequent cuts. They are hamstrung, even as demand for services rise. They need your help! Support for services sooner means a greatly decreased need for services later.
- Support can mean donations of money, time, or materials. You can call or email to find out what these organizations need.
- Volunteering can mean so much. It looks like giving your friend/family member a break - even 20 minutes is great for a run to the store, a real shower, or a power nap. Non-profits need volunteers to staff and run fundraising booths at events. I personally have volunteered my services to create websites, brochures, and graphics, as well as edit marketing materials and make presentations to groups and committees.