Ever since I have been nominated by Sec Sebelius to be on IACC, (InterAgency Autism Coordinating Committee) I have been getting an earful from Somali and American parents that are not too happy with IACC. Most of it comes from those parents that say their child’s autism was caused by vaccines and nothing else.
I for one am not a scientist and try not to act like one. If you listen to CDC, NIH or any state public health agency – they will say we know for sure – Vaccines don’t cause autism 100%. They also assume that anti vaccine parents are just emotional and more emotional and can not make a rational comment or have an objective view. (this sometimes can be true though – I must say)
Then if you listen to the anti vaccine moms/dads – they say “my child was talking, eating, sleeping, not bolting and when he got the vaccines – within minutes to weeks he/she developed autism”. And if you don’t believe the same-thing, then you are not their friend. Remember, when President Bush used to say “you are either our friend or our enemy”. Well, this is usually their take on any autism parent. We are either their friends and should jump on the anti vaccine wagon or their enemies and we are government puppets. As a result, I got contacted by so many Somali parents who called me that. Yes, me a government puppet.
Then there is the asperger side of autism who has no interest in cause, cure or prevention of autism because to them autism is a difference not a medical disorder. These people are usually verbal, can advocate for themselves (they are part of the President’s National Disability Council, IACC, etc). And all they need are services, resources and civil rights accommodations.
So, as you can see someone in the middle can be in the middle of no-where – because you are not aligned with any specific group.
I believe that autism is caused by a genetic problem that is triggered by an environmental factor that must be addressed with a real objective, non-bias, hard core research that finds a cause, a cure and a prevention because all of the world’s services/resources can NOT keep up with 1 in 88 kids being diagnosed with autism.
IACC (InterAgency Autism Coordinating Committee) is a federal advisory group that has public members and is often and rightfully so the scapegoat of autism’s misunderstanding, confusion, lack of smooth flow of services/resources that do duplicate. We must work together and start research that is based on both genetic and environmental factors. But, most of all listen to the patients that autism is affecting which includes even parents we might not agree with. In other words, we can only find answers to autism if we listen to the families that are dealing with autism in a sincere way that does not belittle them as well as validating the points of those that can self-advocate for their condition.
So, If you are a parent or an autism researcher – please don’t get discouraged and keep asking, fighting and asking again because a stupid question is one that is never asked.
United we will stand for our kids and divided – we will fail our children.
Idil – Somali Autism Mom