Monthly Archives: November 2014

Comments Off on My Response to Katie Wright’s Post on Me as an IACC Member

Alright – so, I usually don’t write about autism parents that comment about me during IACC meetings. I understand as an IACC member – I represent them and it is impossible to please everyone and I also understand parent’s frustrations with Federal government’s response to autism.

However, I would like to make an exception to this rule regarding Katie Wright. First, I really admire and respect Katie’s views and feistiness. To give a brief history of Katie to those that might not know her which would be if you are not part of the autism community – Katie is the inspiration that created Autism Speaks. Suzanne and Bob Wright are the founders of Autism Speaks and the parents of Katie whose son has autism. As we all know, Autism Speaks is arguably the most powerful and wealthiest autism advocacy/research organization in the world. Bob Wright among other things was CEO and Chairman of NBC.

Katie also writes for Age of Autism which is an autism blog where she mostly disagrees with Autism Speaks’ research activities. She also comes to IACC meetings as well as most Congressional autism hearings. In other words, Katie is not your typical autism mom. I would say, she is very well connected and has more influence than most of us only dream of.

First anyone to call me nice in any autism committee is really a pleasant surprise. Katie said I was too nice and neutral. Ok, let’s explain that before it goes to my head. She means when it came to vaccines and autism. First of all, I am not a researcher and nor do I play one in IACC or any other committee. 2nd, IACC has directors of every Federal agency responsible for autism from NIH, NIMH, NIEH, CDC, FDA, Dept of Ed, Dept of Defense, CMS, etc and public members including me. As a public member, Secretary of HHS Sebelius appointed me for specific reasons which were about autism and racial disparity which is my passion. 3rd, I have zero desire to go against research or the very person that was kind enough to appoint me. 4th, even if I wanted to – I have to use logic and science which tells us autism is caused by both genetic and environmental triggers which we still don’t know exactly what those are. 5th, if you read my blog – I am only interested in autism therapies, services, nonverbal autism, wandering and fighting racial autism disparity. I have zero interest to question America’s best researchers and public health leaders about autism and vaccines – sorry Katie. I really just don’t.

6th, I understand many Somali autism families blame vaccines for their children’s autism and I blame the Minnesota department of health which has failed our Somali autism community by not doing any autism research that focuses on environmental causes. MDH also failed our community under Dayton administration for its charge of assurance miserably. This however does not mean we go against current science and research even if our state health department is incompetent.

I remember back in 2012 – during one of IACC’s meetings, I met one of Age of Autism’s writers who is also a parent along with Jake who now runs autism investigated blog and they told me to ask about vaccines when Sec Sebelius came. I told them – I was going to be nice and neutral and not piss off the U.S Sec of HHS who just appointed me and I meant it. Plus, even if I asked her a question about vaccines and autism, she would’ve referred my question to NIH, NIMH and CDC directors who were all sitting there and they would’ve cited science and research which says there is no correlation. In other words, I would have wasted my opportunity to ask a question, so instead I asked about autism and racial disparity which again is my passion because no child should get less therapy or services simply because of the color of their skin.

Here is my gentle and friendly advice for you Katie; I don’t think there is another parent in this country that is more well connected or has more influence than you. So, if you don’t agree with the current research, then ask your mom and dad to fund a different one that can link autism to MMR vaccines. Why not put your words and your money in the same place. Better yet, tell your mom and dad to direct Autism Speaks to do a vaccine/MMR and autism study. I am sure you can persuade them.

Finally, if at any time – you want to advocate with me on the issues that I care about including Wandering which I know you care about as well then don’t hesitate to contact me. I would be more than happy to join that effort with you. Oh and I am very impressed and glad that Autism Speaks now has a Community Affairs VP, Ms. Fields who is a person of color. Finally, some color in Autism Speaks leadership, I think that is great!

As usual, above words do not reflect any committee, agency or candidate.

Idil – Somali Autism Mom & Minority Advocate

Category: Autism Policy

Comments Off on Jerry Seinfeld Self Diagnoses Himself with Autism then Retracts – What

Alright – so, if you follow national autism news then you heard that Seinfeld the actor and comedian oh and the millionaire diagnosed himself with autism during an interview on NBC with Brian Williams. Well, this made some advocates and parents pretty mad and some who are always desperate that our kids and adults with autism to be different not disabled were very  happy. Then Seinfeld said oops sorry, scratch that – just kidding I am not really autistic. WTF, who plays with such emotional and toll taking disorder like autism. Well – only over-rated Hollywood – please look at me, pay attention to me actors that have no idea the real lives of autism families.

My take was – are you kidding me. The show Seinfeld was based on an abstract comedy not falling down then laugh comedy. And, excuse me but understanding and creating abstract anything is soooooo difficult for our kids and adults on the spectrum. I think Kim Stagliano from Age of Autism who has three kids with autism put it best. My heart goes out to parents like Kim who have more than one child on the REAL spectrum.

I am sorry, but Seinfeld did not just acted on his show, he created it. Heck, I would like his kind of autism. I think out of touch celebrities who might not understand autism by any means think they can self diagnose themselves. The problem with this is – those with influence and power see these people and assume they represent all autism. How bad can autism be if Jerry Seinfeld has it

There are true autistic heroes like Temple Grandin, John Robison and Ari Ne’eman who are all autistic and have achieved so much, but Mr. Seinfeld – come on.

Autism is a nuero-developmental disability and while it affects each person differently, these kids/adults have many challenging and difficult things they deal with daily.

Above words do not represent any committee, agency or candidate.

Idil – Somali Autism Mom & Minority Advocate

Comments Off on Rodney King Injustice All-Over Again – 20 Years Later, When Will Justice Prevail for Black Americans

Alright – so, this is not directly about autism, but if anyone thinks there is no racism then they clearly live under a rock. I am saddened and hurt by this wrong verdict to not indict this officer who shot and killed a young black teenager in Ferguson. I remember vividly about the Rodney King beating and how it was on video, yet no justice there either. Black lives matter too.

Separate and unequal,  A Mother’s White Privilege – but not for Black Mothers, how can that be.

I grew up in Boston and I remember the Charles Stuart case very well where a white man blames the shooting of his wife and himself on an imaginary black man and guess what – wait for it…..Boston police actually find an imaginary black man Willie Bennett and arrest him. Think about that for a minute. When a black child or person is killed by the opposite race, there is always some reason to justify their actions, but they arrest blacks even made up ones.

You see it does not matter because justice rarely prevails for people of color here even if video supports it, even if a child is killed, even if whatever – there is simply no justice. How can a nation built on equality and justice treat so unjustly to some of its own citizens? I ask… I cry as I write this, I am pissed as I write this, I am sad as I write this. How can any minority mother let her teenager son go out and not worry now. How can this happen again 20 years later?

Where is NAACP? Where is the National Urban League, Where is the Black Congressional Caucus? Where is our First Black President? Where is our first Black Attorney General? Where is equality here – where is justice? Did he need to shoot Michael so many times, how can that be self defense. Shouldn’t that be killing cold blood and leaving the body for hours on the street while blood drained into the street like an animal.

I cry as I write this, I am pissed as I write this, I am sad as I write this. How can we now trust those trusted to protect all of us? how can we know they won’t protect their bad apple? Why was a prosecutor with clear bias intentions allowed to take this case? why didn’t NAACP and others say no way this guy is too tainted to be fair?

Blaming twitter and the media for the death of a Black teenager – isn’t that mind boggling, isn’t that bizarre, isn’t that a red flag? What happens now because Ferguson is every city in this country where the police force never reflect the citizens? Why do we vote for stupid and racist then only complain. Why can’t we vote for our own or for those that will be fair and just.

We can beat racism at the ballot, we can get justice if we vote right and for fair people.  An indictment needed to have 9 out of 12 jurors, and the fact that 9 jurors were non minority was not an accident. How long are we going to be fooled. We can’t just tweet here and there, those with power and influence must do something.

How Ferguson’s Black Majority Can Take Control of Their City. This will not happen until people actually vote and replace these arrogant and racist leaders in Ferguson and nationwide. Sadly, it just does not click for us to make the connection that our votes are connected to who is in charge as it was evident in this months midterm elections in Ferguson.

Unless we vote them out another child will be killed and no justice will be served. We can’t keep repeating history and wonder why no progress has happened.

Above words do not represent any candidate, agency or committee.

Idil – Somali Autism Mom & Minority Advocate

Category: My two cents