By Christina Salvo
Thursday, March 20, 2008 at 10:48 p.m.
Read more: Local, State, National, Politics, Health, Community, Colorado Springs, Family
Nearly 1.5 million Americans have been diagnosed with autism. It is the fastest growing developmental disability in the US but also one of the most under-assisted.
Although there is a greater chance of being diagnosed with autism than diabetes and cancer combined, autism still receives less than 5% of government health funding for early intervention and therapy. Too often the burdens related to treating autism fall completely on the parents shoulders. While many parents are managing to carry the load the question becomes who will take it when they are gone?
Like any mom Rhonda Spellman beams with pride as she dreams about her son Tanner's future. "At eight and a half he's debating whether he wants to be a marine biologist, an astrophysicist or a zoologist," said Rhonda. But whether these dreams will ever become reality, is what keeps her up at night.
With a cognitive IQ of 170 it will not be a lack of intelligence that limits Tanner, but his lack of social ability. Rhonda said "Other children don't understand him and he doesn't quite fit in and how is that going to affect the job force, I don't know."
The world is a scary place for any parent to send their child into, but it is even scarier when that child operates in a different world.
Inside 15 year-old Ryan Hamilton's home while interacting with his younger siblings and parents, Ryan's disabilities are not that obvious. But it is out in a social setting where Ryan's father, Roger said his disabilities become more apparent. "Someone the other day introduced himself to [Ryan] and he didn't know what to say. He said 'dad what do I say now?' because he didn't know how to respond to their introduction." It is simple social interactions like this, which may seem small, but make a big difference in life, and will continue to grow in importance as Ryan grows into an adult.
Like Tanner, Ryan was diagnosed as a toddler shortly if not immediately after being vaccinated. Ryan's mother and author of "Facing Autism" Lynn Hamilton said she watched her son progress normally as a baby and then suddenly regress losing all language and communication skills.
Lynn said "We treated [Ryan's autism] with 40 hours a week of applied behavior analysis. We treated it with dietary intervention, bio-medical interventions. We looked under every rock." And used every penny. Behavior therapy alone cost the Hamilton's $80,000 a year.
Fortunately, Ryan's steps have been large and many, but the Hamilton's have no idea whether they will be enough to walk Ryan into total independence.
"As a mother that's one of your greatest concerns is what will happen after I'm gone," said Lynn. "There are so many unknowns with his future. If he was fully recovered fantastic, we'd know where it's going. If he was severely autistic, still we'd know what was happening, but since were in that no-man's land the unknown is a scary thing."
Lynn and Rhonda describe their children as being stuck in "no-man's land" because in Colorado an autistic individual must have an IQ below 70 to qualify for state assistance.
Frustrating to say the least according to Roger who said "there are kids that need to learn how to speak, learn how to interact, how to live on their own. And there are parents very concerned about the future of their children and it doesn't get enough attention."
Case and point, a bi-partisan bill introduced last year by Sen. Hilary Clinton (D-NY) and Sen. Wayne Allard (R-Co) has now sat on the house floor for nearly a year collecting dust. If the "Expanding the Promise for Individuals with Autism Act of 2007" can get enough House Representatives to co-sign it, the bill would be the first national bill to provide assistance to autistic individuals throughout their entire lives and to individuals with any IQ. The act will set aside an effective $350 million for critical interventions, therapies, and services for children and adults on the autism spectrum.
It is a great first step towards giving autistic kids a prosperous future full of infinite possibilities if it ever steps off the ground.
To urge your representatives to co-sign the Expanding the Promise for Individuals With Autism Act of 2007
Read more about autism or contact Lynn Hamilton or Rhonda Spellman for more information.