Monthly Archives: January 2013

Why Do Most Parents Hate IACC?

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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

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Comments Off on Jan 21, 2013 – Dr. Martin Luther King day celebration in Minnesota

On a very cold day in Minnesota, Dr King’s life and accomplishments were celebrated throughout the country and our state of Minnesota. 

A week or so prior to Jan 21, 2013, I received a phone call from Council of Black Minnesotans who said they were going to nominate me to the Governors MLK Commission as a person that made a difference for minorities in Minnesota especially autism. At first, I thought Rebecca from the CBM was kidding or this was April fools day joke that came in early. Because I am just a rookie autism advocate mom that is frustrated – but made a difference, hardly.
Lone behold, CBM (Council of Black Minnesotans) calls me again and said I am one of 9 folks that will get the MLK award in Jan 21, 2013 which included Kevin Lindsey, Commissioner of Minnesota Department of Human Rights. Now what now – was my first reaction.
Here we are on Jan 25, 2013 and I am writing this blog to explain my disbelief and gratefulness. I am so delighted and really humbled by this honor. I am very thankful to Governor Dayton’s Commission for selecting me. I feel even more responsibility and a sense of urgency now to keep advocating and marching on for fairness, equality, and access for autism therapies and services for all especially low income and minority autism children/families. 
Note; CBM now has a new director Edward McDonald appointed recently by Governor Dayton who I truly admire and respect. I think he is a man of character and a backbone that will finally turn the tide in addressing the endless disparities in Minnesota for people of color from health, to education to economic opportunities. This guy rocks!
I thank everyone that has supported our autism cause and continues to support us.
God Bless! 
Idil – Somali Autism Mom

Category: Uncategorized