Alright so – I am having a really hard time processing this news from Dr. Thompson and how CDC seems to be really quite about it. Is it true & did they not include data from African American boys? Is Dr. Thompson a nut case having a mid-life crises? Why would CDC not tell all data? How can anyone now trust their word if this becomes true? how many parents will not vaccinate their kids now? how many parents now regret it?

I have so many questions and no answers from CDC so far. The only thing we have is Dr. Thompson who seems to be standing by his comments and accusations and is still employed at CDC. If he is lying, why is he still there?

My son is now 12 and was 2 in 2004 when this study was done which is when he got the MMR vaccine. I am not sure if I knew what I know now – if I would have made the same decision. I think any risk for autism is a risk not worth taking. I can’t remember the last time I slept 8 hours straight. I can’t remember a day that I did not worry about autism, my son and how autism has completely changed our life. I cry as I write this because I want to trust CDC and I want them to wake me up from this nightmare. I want them to tell us there is no link and there is another reason for autism and our children.

I want CDC to be a leader in public health and they are acting like a coward right now by hiding and keeping quite. Autism might have silenced our children, but it shall never silence their parents. I feel betrayed if this is true because I have voted with CDC every time a vaccine vote was up at IACC. I figured they are the experts and I am here to support them. I sat across Dr. Boyle and voted with her. I publicly and privately defended CDC against anyone and everyone including my own family and friends. I took beatings in social media every time I voted with CDC, but I still defended CDC because I thought they were the scientists and researchers and will always tell us all data with no salt or sugar. I know families who did not vaccinate their children after the first one got autism and the 2nd and even 3rd child still got autism even with no vaccines, so I understand there is a genetic component. But, is it for all children? Are there sub groups that are more prone to environmental factors and if so what? Why would the CDC hide the data for Black boys in their 2004 study? They must’ve did it for a good reason – at least that is what I am hoping to hear.

As a Black autism mom, I always see things from my lenses that is not always a fair or equal view from subtle bias intervention policies. And, I wonder if Dr. Thompson said CDC took out data for Caucasian boys to skew their numbers because it showed they had a higher risk for autism when given the MMR on time, would the mainstream  media that is mostly Caucasian be so dismissive. I tried to get many reporters I know to ask CDC/Dr Thompson questions, but they are not interested. Some just ignored my request, some just thanked me for calling them and some said Dr. Thompson is a nut job who is having a mid-life crises. As a Black autism mom, I wonder if their answers would be the same if the omitted data was for Caucasian children.

I am really having a hard time with this and I have been crying and second guessing all of my votes and decision to vaccinate my son in 2004. I am not sure if I would have done it, if knew what I know now. I think I would have waited until he was older. Maybe he would have still been diagnosed with autism, but now I will never know. I was deprived of that choice in a country built on choice and freedom. How can that be? how can America take choice and freedom from their citizens and parents. Will President Obama say if I had a son, he would have had a higher risk for autism? Would Eric Holder say – I am a Black father and that could’ve been my son? Who stands up for our Black autistic sons that according to Dr. Thompson had a higher risk for autism when given MMR vaccine on time, but were denied that choice.

Who do we get mad at now? who is responsible for this now? when will CDC address this? when will Minnesota department of health take their responsibility seriously and really address autism in the Somali community? how many more children like mine will it take? how many more families dreams will be altered or changed? how many more moms and dads will cry? when will Blacks be treated like equal Americans with the right to life, liberty and happiness? WHEN? I cry as I wait. I am angry as I write this. I am sad as I write this. I am frustrated as I write this. I feel so many emotions that I can’t explain as I write this. Parents should always have the right and the choice to protect their children and if what Dr. Thompson is saying is right then Black families were again denied that right and that choice.

I want answers and I want them now for me, for my son and for the thousands of Black boys and families that autism has affected profoundly. If we can’t trust CDC and MDH with our children’s health then how can we possibly listen or validate anything else they tell us from now on. Often new parents ask me about vaccines and I would always say – I trust CDC. Can I still say that? Shall I not tell them about Dr. Thompson’s new revelations? Can I say – don’t trust or listen to MDH because they don’t care? What can I say to those that seek my advice? What level of risk is worth for your child’s health?

Autism might have silenced our black boys, but it shall never silence their parents. CDC – you must responds and you must tell us what happened and why. Minority autism children and families are already discriminated against in early intervention, in services, in resources and now in research. Come on – this can’t be and this double standard must end. For the sake of argument, let’s assume Dr. Hooker’s study was wrong and should have been pulled from publication, what about the 2004 CDC study – was it wrong, did it omit data for Black boys? We need an explanation not silence from CDC.

A CDC researcher can’t just admit to something so horrible and so wrong and CDC can’t just stay quite. We will not rest until we get answers and explanation. For the record, I have defended and like Dr. Allsopp, but CDC is a big agency with huge public health responsibilities and someone needs to come out and explain this for the sake of public health.

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

Idil – Somali Autism Mom & Minority Advocate

Alright, so we all heard Mr. Dan Browning’s story on me where he tried really hard in a passive aggressive – Minnesota nice way to make me sound… wait for it, really wait for it because it is original…..drum roll please….the angry black woman. That is right, a term I have not heard before… oh wait I have. Isn’t that my nickname by so many MN DFLer’s – you know the party of tolerance, welcoming and all that crap.

First and foremost, people like privileged Brownings of the world only energize me. 2nd, in White liberal Minnesota media owned and operated – I don’t really expect much to begin with. They will never ever ever be able to cover anything from our lenses, especially racial disparity. They hardly look like us, their leadership hardly reflects the communities of color. For instance, the head Tribune editor, most of their reporters and head editorials are mostly… wait for it again…White men. You know that group that usually controls….oh what is the word. Oh yeah – everything. By the way, MPR (Minnesota Public Radio) – you know the radio for the public – guess how many African Americans work there as reporters…..come on wait for it please…..good drum roll here…..ONE. They just hired…..oh wait I meant as a contributing part time Mukhtar who will only do bad stories from our community. What a surprise. Mukhtar is going to tell us how our kids and teens are somehow opting out of  going to the mall and seeing movies….you know things that teenagers like to do, and instead going to countries they hardly know, speak their language or understand their culture to fight for justice. What? That is right, what teenager says – you know today is a good day to leave everything I know, my family, friends, safety and go to a place I never been, know nothing about and maybe even die. Rather someone should ask – why, what is causing this, what is the root cause? Maybe lack of real African American teen jobs, no opportunities, harassments by police, Mpls failing education system, lack of good health care, shall I go on. You get the idea. So even if “they” the controlling freaks hire one of us – it is to demonize our community.

So, what do we do. Well – it is easy to just complain and whine. I think it is better to use that energy to write our own stories in our own news outlets, write our own online news sites, become reporters, news directors and shape our own message. Malcolm X once said the media is the most powerful entity. It can make the innocent look guilty and the guilty look innocent. I always say a reporter can write a story about cockroaches in a way that you want to adopt them as pets and by the same token, a reporter can write a story about Mother Teresa in a way – you might question if she was related to the KKK. In other words, shaping the narrative of our message shapes policy. And, if we let the Brownings of this world speak for us then it will never be from our lenses.

There is an online news site called Crew of 42 that was started by an African American political reporter and the reasons she started this are so true yet so sad. Lauren Victoria Burke is her name and she writes about Congress and Politics. Lauren chose to write more about CBC (Congressional Black Caucus) because when White reporter wrote about them – she said this;

1. CBC angry – when any one member takes a strong position.

2. CBC forms a roving gang and wants something – when two or more members agree and act accordingly.

3. CBC in disarray – when two or more members disagree.

Think about those for a minute, what does it tell us and how does it relate to autism and Mr. Browning’s story. Remember his provocative title – MN autism task force disbands in dysfunction. What – you overrated White privilege reporter? really. Let’s explain this again – I disagreed with mostly White DFLers about how they wanted to NOT share any of the HRSA grants that I advocated for with minority owned organizations and that is called dysfunction because god forbid – we disagree. Come on – how original. Aren’t they the party of fair share and all that crap anyway.

Anyway, Thanks for the energy Mr. Browning – I am now more determined to speak to our young students of color to be tomorrow’s news reporters so that people like you who are clearly subjective and out of touch don’t keep telling our narrative. Oh, and while Caucasian autism families were encouraged to send emails and call their legislators, yet somehow when I did it – it was no good & bothersome. In fact, I think they called it action alert and asked many parents to send emails to their legislators or those in committees, yet my emails asking for equal access were bothersome, come on – really. The level of hypocrisy and double standard would be all too funny, if it weren’t all-true. Rep Norton would ask her red t-shirt wearing gang to send lots of emails in their autism advocacy, but somehow did not like mine. unhh – interesting. Imagine if we defeated Norton and voted her disparity and bias autism legislations out for good.

Here is how welcoming DFLer’s are:

Democrats pay Black staffers 30% less. Yes, really and you still want to work and vote for them.

Democrats get Black votes, but won’t hire Black firms – what a surprise there. Why buy the cow when you can get the milk for free, right? vote wiser.

This happens when minorities don’t vote for their own.

My previous post on Mr. Browning and his out of touch with minority autism advocacy.

Mr. Browning’s other autism stories which is interesting because he kept asking me why I did not like MN DFLers. I don’t think good reporters should care one’s political views unless you are writing an op-ed.  He seemed to be obsessed with autism stories before maybe because he does not like autism and GOP mixed as if only DFLers have autistic children.

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

Idil – Somali Autism Mom & Minority Advocate

Alright, so – I am still shocked and more shocked about this statement from Dr. William Thompson who is a senior researcher at Center for Disease Control in Atlanta. To give some background here.

Personally I don’t write about vaccines or what causes autism as I am not a researcher nor pretend to be one. But, in the last few days – there has been lots of blogging and online chatting about Dr. Thompson and CDC’s study regarding autism and MMR. What provoked me was the mention of race, racism and autism. Now, that I am eager to combat and advocate. Then when I saw this video, I cried and cried even more because there is no way this could be true. Black boys under 36 months were more likely to get autism after the MMR vaccine. I am a Black mom with a Black son who has autism. Imagine my rage and anger at this, but I tried to let cooler heads prevail so I contacted CDC Director Dr. Frieden’s office to get it from the horse’s mouth. At first his assistant said he is in Africa dealing with the Ebola crisis. Then I asked who else can either verify or deny this story then she said well send an email and wait for 10 days. Well – that did not settle with me so she transferred me again and again with still no answer end of today and said I might hear something tomorrow.

Then just now, my friend and fellow IACC member wrote a blog on this posting Dr. Thompson’s statement on this study and his regret. Below is the entire letter.

I am not sure what else to write at this time as I am still crying and really hoping I will wake up tomorrow and this will be a nightmare. If not, oh my God – this can’t be true. When Dr. Wakefield says Tuskegee experiment all over again except this time it is more cruel. It is for small Black children – This can’t be true. I can’t write more and will need to regroup as this develops and I hope to God becomes a bad dream not reality. There is so much more stories on this, but here is just one.

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

Idil – Somali Autism Mom & Minority Advocate

Alright, so – if you follow this blog then you know in my little advocacy I have connected autism to policy to politicians. Here is why, politicians hire state agency leaders who do autism research and provide autism resources and service for children and families affected by autism. By the same token, state and Congress representatives write laws and policies that affect autism children and families.

Here is my take on the results starting with the top of the ticket.

The governor primary was won by Jeff Johnson on the republican side. Jeff came to our Somali autism awareness day in April 2014 where we asked him if he won – what would he do differently and assure autism research was done. He stated he would look into research and support for autism families. I know you are thinking didn’t Dayton promise that in 2010. Yes, here is what candidate Dayton promised back then in which he has done zero, zilch, zip. His health department commissioner has failed Somali autism community. So, why should we trust any politician’s words. Good question and in moving forward, we need better assurance from Johnson that his administration will actually mean what it says and will do what it promises. Personally, I like Jeff who even invited me to be one of the people that introduced him at the MN GOP convention in Rochester earlier this summer. And, as time and campaign happens – we will try to get actual assurance and tangible promise.

Then there was the U.S Senate Race – This one I was extremely disappointed that Rep Jim Abeler lost. Jim who I consider a friend has been a champion for autism advocacy from the day I met him back in 2010. When he was in charge of health and human services finance committee in MN house of reps, he asked MN DHS to look into how autism services were being covered for all kids on the spectrum. Jim is truly one of the main reasons, we passed the autism bill last session at the state capitol. On the other side, Sen Franken already sits on HELP Committee (health, education, labor and pension) and has written zero bills or policy for autism in the six years he has been in office. Yes, he has voted for the autism act in 2011 and autism cares 2014, he even got on the congressional autism caucus and I think sent me a congratulations letter when Sec. Sebelius nominated to the Federal autism committee, but again I see that as nothing big, just pretend work. I think Abeler would’ve made a fantastic senator. There is still hope and we can defeat Franken by sending him back to Saturday Night Live where he belongs.

Then there was the highly contested state representative position between Kahn and Noor. Here – I think Noor lost because he under-estimated the power of autism moms and families. Noor decided to ignore autism issues in our community, has not attended one single autism event and thought he did not need our votes. It turned out that he did. Kahn on the other hand fought dirty and won with tooth and nail. There is one statement she made which was very interesting. Rep Kahn said “some of the district look like me and some look like Noor”. Yes, that is very true, but the question is why are those that look like Noor doing bad in every category of having a high racial health disparity, wide education gap & high unemployment? Furthermore, Rep Kahn has not passed one single legislation that actually uplifted any Somali community member including the child care issue. Sadly, no one will ask or care because we always assume a DFL must represent minority districts. My question for district 60B would be if those representing you now are so good and care about your issues then why are your kids failing in school, and why do you have one of the highest health and economic gaps in the country? Think about it and vote wiser.

Rep Kahn chairs one of the most powerful committees in the house, yet she has failed to uplift one single Somali issue. Kahn also voted to eliminate the MN Autism task force even though Somali kids in district 60B have the highest autism rate in the state. Kahn will always vote with Thissen and Bakk and throw her district’s Somali residents under the bus.

Voting out Rep Kahn in Nov 2014 is the right thing to do.

Thanks!

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, we all heard that an unarmed Black teenager was shot and killed for simply walking on the street by a White police officer. This is what happens when the police does not understand the community they serve nor look like them. How does this relate to autism – you ask. Well – when the owners of autism providers don’t look like us or reflect us is why so many of our kids are not treated well, taught well, discharged too soon, put on endless waiting list, prescribed un-necessary hours of treatments so on and so forth. Hence, my point of always we must be representative of those providing services whether in autism clinics or in city streets.

This also proves that racism is alive and well. Have you ever wondered when we demonstrate, it is called a riot and when Caucasian Americans including those with guns such as Bundy defy or protest, it is called exercising their first amendment. There is clearly two America here – one for the White and privileged & one for the colored and dismissed. And, this is our fault completely because if we don’t vote or vote for stupid politicians that don’t truly represent us then Ferguson happens – period. Think about it.

Ferguson, Missouri is over 60% Black, yet the Mayor is White who hires the police chief who is White and hires police officers. You see the connection. Stupid is as stupid votes. If Ferguson residents actually voted for a mayor that reflected them, then that mayor would’ve hired a police chief that reflected the residents who would’ve hired police officers that again reflected the residents there. Get it – if you vote wisely then policy and leadership change happens. But if we don’t vote or assume our votes don’t matter then Ferguson happens.

So many people are angry right now and rightfully so, but no Black leadership is making the case of why Ferguson is so poor, schools are under-funded and no one looks like them in city leadership. To me as a rookie autism advocate that is where the Al Sharptons, Jesse Jacksons and the Boyce Watkins need to concentrate on. Vote for those that reflect you or will hire people that will represent you.

If we use this example in Minnesota – Take Governor Dayton who won with less than 9000 votes and if he did not get over 90% of the Black vote would not have won. Gov Dayton has over two dozen commissioners, ONLY one is African American in charge of MDHR (Minnesota Department of Human Rights) which receives the least resources of the state budget and has almost no power to do anything, yet Gov Dayton thinks if he just comes to communities of color during elections and preaches useless speeches – we will just vote for him again.

In the last several weeks, Gov Dayton has visited and went to almost every Somali event and some clueless Somali person even held a fundraiser for him. Let me say this to that naive Somali person – 1st, Dayton is from the Dayton department store, he earns more money by just breathing than you ever will in your lifetime. 2nd, Dayton’s ex wife who still funds his campaigns is an heir to Rockefeller – you know one of the wealthiest American families in the country. So, some Somali refugee raising funds for Dayton is stupid and useless show-off. Maybe you can raise funds for the Somalis in Brian Coyle community center that are homeless because the city homeless shelter is too full, or the families who can’t find jobs because Minnesota has the highest Black unemployment rate in the country. Charity starts at home is my humble little opinion.

My humble advice to any Somali or a person of color is vote every election and vote for those whose administrations represent you not those that just preach useless campaign slogans.

Oh, in case you live under a rock – here is some polls of what Americans think of Ferguson. Racial and Political divide – and this might be why most minorities vote for DFLers. If GOP’s want to win – they must display better compassion and empathy.

Thanks!

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

Idil – Somali Autism Mom & Minority Advocate

Alright, so if you read even one of my blog posts then you know that I fiercely and with no apologies advocate for children with autism that are low-income and/or Minorities in Minnesota and to some extent nationwide.

So, what does this have to do with MN Autism Task Force? Well – first let’s explain the MN Autism Task Force. It was created by Sen. Senjem a MN GOP from Rochester years ago and again by Rep Mack from Apple Valley also a MN GOP. The goal was to write a statewide autism plan and implement it. Autism is a life long neuro-developmental disorder that affects each child differently. One in 68 kids in the U.S have autism and 1 in 32 Somali kids in Minneapolis have autism.

In Minnesota, there are lots of autism services and resources, but disparity is still high and prevalent. As a minority autism advocate – I am always asking or begging a reporter to do an autism story from our lenses. And, in all fairness, Mpls Tribune – especially Maura Lerner has done fantastic stories that really shaped autism policies towards positive and equal opportunities. Sadly, Maura no longer covers health so I decided to not bother the Tribune as much because I always get a feel that many of the reporters there are one sided and not fact based. Plus, not many of them reflect the diversity of this state and explaining to a Caucasian man autism racial disparity is like explaining a man to childbirth. They just don’t get it.

Imagine my surprise when I got a call from Mr. Dan Browning stating he is with the Mpls Tribune and was interested in doing an autism story. Initially, I thought – wow Thanks. Then I asked why the interest now. He said he is one of the health reporters and an autism mother called him asking him to do a story about autism and transition services in Minnesota. So far so good – so I thought. Then he said first he wanted to write about the MN Autism Task Force and he spoke with its previous chair Mr. Trahan who resigned because God forbid I asked sharing of HRSA grant funds with minority owned agencies.

Let me explain a little more, personally I like Mr. Trahan and feel his pain as an autism parent. I think he cares about autism families and wants to help them. However, Mr. Trahan does not understand autism policy from poop. For example, he did not understand the Federal agency HRSA’s grant or why MDH did not want to share the resources. He kept saying, “I have Black friends”. First as a Black person – when I hear some White man say that, it sounds cheesy and insincere. Really, African-Americans don’t care if a White person has Black friends and that is their defense to I am not racist.

2nd, MN Autism Task Force is a public committee and all meetings and discussions should be public including Mr. Trahan’s comments and votes on the HRSA grant. Sadly, Mr. Trahan chose to collect supposed votes via email that no one else saw and kept saying to me no one wants to vote on sharing this grant with minority owned agencies. Well that could not be true because I know all four agency leaders told me they liked the idea of sharing the resources with minority communities as well as reps from other entities. As a result, I asked and demanded that we vote publicly and let your vote speak for you on the record. Needless, to say MDH sent the grant application to HRSA with my recommendations of sharing the resources and putting actual dollars into it.

Mr. Trahan then got mad because how dare equality prevail and he quit the task force, yet somehow he wants to keep injecting himself into it every chance he gets.

In parallel, Rep Norton and Sen. Eaton both MN DFLers are task force members who have written so many disparity creating autism bills since 2010 and we have fought them every session and won every time. Keep in mind this is the party that preaches equality, yet when push comes to shove they practice salty policies. My take is this, Mr. Trahan should not have quit and should’ve acted like an objective chair and put every decision to a vote. Let the majority win through their vote – period. We as MN Autism task force members should vote publicly and be proud of our votes. In other words, we can’t preach sugar and practice salt. The goal here is to defeat Rep Norton, Rep Liebling and Sen Eaton at the polls so that they can’t just ignore their constituents emails instead of addressing their issues. If you are interested in defeating Liebling this year, contact her opponent. No one is running against Norton yet, but there is always hope. And, we have to come back in 2016 and defeat Sen Eaton who represents large minority voters that she has neglected time and time again.

In terms of Ms. Dalbec who heads up the children with special needs area within MDH. I think the only reason she was hired and still is there is something called White privilege. If you don’t understand that, please come out of living under a rock. I can write books on White privilege and Minnesota DFL politics. Plus, MDH did something after I complained about her. First, MDH hired two minority staff for autism. Second, HRSA asked MDH to improve their phone and website and follow CLAS guidelines. In fact, MDH asked Wendy from National Center for Cultural Competency to come and help them with their website and phone line this summer. Third, HRSA has implemented more disparity reduction policies for MDH and other state health departments in the country to follow in reducing racial health disparity. Another fact, I just recently received a letter to my questions of how MDH can be more diverse and in reducing autism racial disparity from the administrator of HRSA – Dr. Wakefield. Let me put this in laymen’s terms, me a rookie autism advocate got a response from Dr. Wakefield who was nominated by President Obama to head Federal agency Health Resources & Services Administration. The agency in charge of the country’s child and maternal health leader thinks some of my ideas are good. It doesn’t get better than that and I am so grateful and thank Dr. Wakefield, Laura, Diane, Denise and Bonnie at HRSA for that.

So, you see Mr. Browning – change has happened because of my advocacy in both Minnesota department of health and HRSA. Heck, I even got invited to lunch with MDH Commissioner. Therefore, Mr. Browning’s words of nothing happened after I contacted MDH and HRSA is simply not true and wrong. I really hoped Mr. Browning got the facts and the real story instead of silly he said – she said. Autism is too important. My advice to Mr. Browning would be cover autism from more important angles and there are many. And, my advice to Mpls Tribune would be try to see things from minority views, from conservative views and maybe hire more reporters that actually reflect the diversity this state. My advice to minority students especially Somalis would be study to be journalist, reporters, news directors and news producers, otherwise our stories will never be told from our perspective. In order to shape policy, we must have reporters that can tell, write and shape our story from our lenses and Mr. Browning ain’t it.

In terms of current Bloomington School Board – Ms. Dawn. I respect her and wish her well. But yes Dawn like millions of others in Minnesota and nationwide only wanted to fight and advocate for wealthier private insurance autism families because that is what they see and need. I on the other hand – see and need low-income and minority autism families to get equal access in autism therapy and services. We all advocate from our views and from our life experience. The difference is when I asked Dawn to add public insurance coverage to the recommendation, she brought it up for a vote and the majority voted for both public and private insurance coverage for autism services. Imagine if Mr. Trahan actually put everything to a vote rather than dictate and try to intimidate.

Interesting note; when Somalis read this – it energized some of them because they could see how important it is to follow your legislator’s votes and legislations because what they say during campaigns is very different to what they do when elected. I hope our community votes for candidates that will reflect us in policy, such as Askar for district 60B, Abeler for U.S Senate and Johnson for Governor. I support them because I know they support autism families.

I am very glad Sen. Senjem is eager and determined to continue this important MN Autism Task Force and I hope that members are able to chew gum and walk at the same-time. We don’t have to be BFF, but we must stay on task and address autism in Minnesota – period.

Vote wisely on August 12th! And on Nov 2014.

By the way, in case you live under a rock or think I keep talking about racial disparity and Minnesota for no reason. Google a little and maybe read this. You might also want to read once a while one of two only African American news organizations, Minnesota Spokesman Recorder.

Thanks!

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

Idil – Somali Autism Mom & Minority Advocate