On Nov 29th 2012 at 2pm, there will be a hearing that has been pushed by many autism families at Oversight and Government Reform Committee in Congress. There will be two people from the Federal government – NIH and CDC, (Dr. Boyle and Dr. Guttmacher) both very nice and understand the urgent need for autism to be addressed. There will be six people representing the public or autism families including two on asperger end of autism, three fathers and a grandfather. None of them are from a diverse community, none also are mothers. (research states autism mothers have a stress level similar to a combat soldier, yet no autism mom is represented in this witness list – not good in my humble little opinion).
As I predicted – this group while impressive does not reflect the whole story of autism faces in this country at least in diversity as there are none and in those of us parents whose children are on the classic or nonverbal side of the spectrum who want a cause, cure and a prevention and are not afraid to say it.
Who speaks for us and our children? Aren’t they as American as Apple Pie, whose stories and voices should heard even if they are nonverbal?
I personally have reached out to Congressman Cummings and Congressman Issa as well as retiring Congressman Burton. I also sent comments and questions from our perspective.
Research indicates that Black and Latino children in this country are diagnosed with autism years later and do not have access to early intervention services and therapies in a timely manner. Thus, the need for diverse autism professionals who understand these communities and can provide early screenings, diagnoses and therapies is critical and can not wait. The cost of not doing it will be unsustainable.
The Federal government especially through the funding of CAA has a responsibility to assure equal opportunities for all American children with autism through education, awareness and resources, and the agency responsible for this is Health Resources Services Administration (HRSA) and has failed miserably. Plus, if the goal is to learn the signs early in order to act early for your child, then we must figure out where to get those early intervention services because Medicaid does not pay for them per EPSDT guidelines written decades ago by congress before autism, and even private insurances don’t pay for early intervention unless parents sue or states pass legislations for state regulated only insurance companies. In other words, what is the point of learning the signs if there is no consistent way to get the early intervention?
We ask Congressman Issa and Congressman Cummings to speak on behalf of all autism families including those not represented by asking the right and responsible questions to assure fairness and equal autism services for all.
We also ask they question and demand the need to find a cure for autism so that our children have the ability to communicate and function as independent as those who will speak on this committee and are on the spectrum. A cure does not mean an elimination of asperger autism, it simply means our children having the same level opportunities to advocate for themselves and live independent functional lives as they choose. It means helping children who don’t sleep, don’t eat or over eat, have no fear of safety, can’t say a word or only repeat words endlessly with no meaning reach their God given full potential. I urge parents of those children to stay vocal and have persistence of laser like focus until our kids are able to tell their stories and live their own lives based on their choice. We must stay at it and never let them down by giving up or accepting less for them.
We ask the committee members to recognize that there are thousands of children/adults with autism who are not able to speak and their families are desperate, frustrated and deserve action now. Please have the courage to speak for our children and their families. We hope this is one of many hearings in Congress to address this crises and next time – the witnesses are more diverse by reflecting the faces of American Autism.
God Bless and Thanks.
Idil – Autism mom
Below is the link of the hearing and witness list:
Correction: (Wrote Durbin instead of Burton who has an autistic grandson and has been a vocal advocate for many autism families. Due to lack of enough sleep because autism and sleep are often not friends). I apologize for the error.