Today was World Autism Awareness Day which as you know was started by Autism parents at the United Nations, Jacqueline Aidenbaum and her husband. It was designated by UN resolution 62/139 and is recognized by most countries around the globe.

Somali Autism Awareness Day started by Mariam Egal who if you have not met her and I describe it – you might end up with a cavity. Ms. Egal is truly the daylight for our autism community. She works harder than anyone I have ever met, she energizes tired parents and motivates us beyond words can express.

We held this event today in New Brighton and it was an amazing event even better than last year. There are many people to thank and I would like to take the time and thank them individually for their time and support.

Huge Thanks to Jacob Frey – Minneapolis City Council. If you are an old school like me and knew Sen Wellsone – I would say Jacob comes very close. Usually politicians preach and talk, Jacob listens then takes action. He treats everyone with respect irrespective of their anything. Jacob told us he can and will support Somali Autism families. He is the real deal.

Huge Thanks to our own Minneapolis City Council – Abdi Warsame. There is no feeling like listening to a policy maker that looks like you. I get one of those Oprah’s aha moments when I listen to Warsame. He can speak about our issues like no other. Warsame stated his door and office are always open and welcoming. We look forward to working with him for many years to come.

Huge Thanks to Jeff Johnson – Hennepin County Commissioner and Candidate for Minnesota Governor. Jeff said his administration will look into autism research and better services for all autistic individuals and their families. Here is his for governor website, take a read as Jeff has lots of great ideas in many areas.

Huge Thanks to Abdirahman Muse policy adviser for Mayor of Minneapolis Betsy Hodges. Abdirahman told us Mayor Hodges understands autism struggles and will keep her campaign promise to support Somali autism community. We look forward to working with her and address many gaps.

Huge Thanks to Elia B, assistant commissioner from Minnesota Department of Education. What can I say about Elia other than she is simply fantastic. I remember the first time I met Elia at her office, I was so mad at MDE and their autism outreach in our community and in general in communities of color. Then Elia gave me few video tapes and I told her I was not interested in tapes and wanted real outreach. Your usual government official usually would get mad. But sweet Elia very nicely said – what do you think MDE can do. Well – then I opened my mouth and haven’t stopped ever since, maybe she now regrets that question. But all kidding aside, MDE has done a very well attended Somali Autism outreach with many school districts, We have interviewed Commissioner Cassellius several times on Somali media and MDE recognizes the need to outreach in minority communities and share the resources with minority based agencies. I am very thankful to Elia and Cassellius more than I can say.

Huge Thanks to Dan Severson – Dan is one of my favorite Minnesotans. What you see is what you get – there is no hidden agenda or politician tricks to get your vote then drop your issues. If Dan promises you something, he will deliver or bring someone who will deliver it. I am very glad I know Dan and know that he will make a fantastic Minnesota Secretary of State, God Willing.

Huge Thanks to Ann Fox, Director of Special Education from Mpls School district. I personally owe Ann so much. She is the person that gave me the first raw numbers of how many autism kids in Mpls school district and how many of them are Somalis. That data started this whole awareness and Ann has been an ally, a friend and a strong advocate in our corner ever since then.

Huge Thanks to Anne Harrington – Anne is the heart of our advocacy. She makes sense of our insane demands. She has been the wind beneath our wings for years. Anne did the first Somali autism parent together in 2008 and invited me. From that day, Anne has been my rock and my confidant. I am eternally grateful to her ever calming advice and support.

Huge Thanks to Commissioner of Minnesota Department of Health Dr. Ehlinger who told us to unite and be at the table of decision making. The Health department is also going to do a Somali Autism conference this month and has hired two Somalis to help with autism issues. We are thankful to the Commissioner for that.

Huge Thanks to Rep Abeler and Candidate for US Senate in 2014. Abeler says what he means and means what he says. He has funded the Somali/Latino/Hmong Autism Study just released last week by UMN, MDH, CSCM and Others. He does things that no one else wants to do. He will fight for his constituents. I remember back in 2010, Abeler veoted a bill in MN House that would have created unequal access to autism therapy between the low income and the upper income families. He pushed DHS to provide autism ABA therapy equally and include low income managed care kids which resulted the new MA Autism therapy policy passed last year in state legislature. And, he has been the constant voice of reason ever since then for our community and autism.

Huge Thanks to Mohamed Shino from BBC Somali Radio in U.K for always telling our story with autism and sharing our pain and frustrations. Many of the parents he interviewed blame environmental factors for their children’s autism. Sadly, our health dept is not interested in looking into that. Of course, this only increases the mistrust between Somali autism parents and Minn dept of health.

Huge Thanks to Abdisalam Adam from St. Paul School District, Dr Reiff, Dr Donna M from UMN, Arc Greater Twin Cities, UMN ICI dept, Mohamed from SAPA, CSCM, Abdirahman Adem from Mpls school district, Hassan Samantar from Pacer, Anab Gulaid from UMN, Nasro Mohamed from Ramsey County, Antonia Wilcoxon from DHS, Jim Bransford from CSCM, Jibril & Salah from KFAI Somali Radio.

Finally, my biggest THANKS goes to Somali Autism Parents. You are my hero, your children are like my son. Our kids are the reason – I advocate despite the many obstacles and resistance I get from many Capitol policy makers. I know I speak for all of you and get my energy, wisdom and encouragement from all of you. This is about our children, our community and our life. May God Bless You All and May God Give Our Children Good Health and Happiness.

President Obama’s World Autism Day Proclamation. And, if you remember President Obama announced Brain Initiative Research on April 2nd, 2013 World Autism Awareness Day to the tune of one hundred million dollars added to his 2014 budget. Congressman Cantor stated he will support this effort which we very grateful for. I know this research efforts from both government & private institutions will lead to unlock the mystery of autism which is a neuro-developmental brain disorder.

You can watch our event here: and watch part two here:

Mpls City Council Abdi Warsame’s World Autism Day Statement.

Autism Society of America World Autism Day Statement.

United Nation’s Secretary General Ban Ki-Moon’s Statement.

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

If you read this blog then you know, I grew up in the East Coast and was a Tip O’Neill/Dukakis/Ferraro hard core DFL that is until I met the likes of Rep Liebling, Norton, Rep Michael Nelson, Sen Eaton, Sen Clausen, Sen Cohen, Sen Franken, Gov Dayton and so many others like them in Minnesota after I became an autism advocate in 2010. Seriously, I get hives from their lack of tangible minority community based policies.

These politicians give a bad name to the party of Sen Ted Kennedy and Sen Wellstone – they either want to contain minority issues and concerns or eliminate them. For example, MN DFL Chair, Mr Martin who is so savvy with his words and can sell water to a drowning minority Minnesotan always comes to our community preaching his party is for equality, fairness and sharing resources with communities of color. And, that we should hold them accountable.

The problem is when you hold them accountable to their votes, policies or lack thereof – they try to contain or eliminate. In the area of autism and Somali community, the last study was done by Gov Pawlenty and his health administration. The last Somali, Latino and Hmong study funded was by Sen Hann, Senjem, Rep Gottwalt, Lohmer, Mack, Gruenhagen, and Rep Abeler all R’s. The initial letters and help for our Federal advocacy came from Congressman Kline, Paulsen, Sen Coleman and Bachmann, all R’s.

By the same token, so many bias and prejudice legislations have been introduced by Norton, Eaton, Clausen, Cohen, Huntley that take resources away from the poor, low income and minority autism families and give it to the already buttered middle/upper income autism families. In addition, current MDH Commissioner has refused to do any autism research and Gov Dayton just ignores all Somali autism problems. Don’t waste your next vote on Franken, Dayton, Norton, Eaton, or Liebling – please I beg you. Also, did you know that Sen Cohen is the Chair for Senate Finance Committee where all bills that have a fiscal note go through is also a board member of the struggling Confederation Somali Community of Minnesota. If this was not all sadly true, it would’ve made a Comedy Central – John Stewart funny sketch or a Loren Michael SNL monologue, maybe Franken can use it when we send him back to SNL this year, God Willing.

In other words, the party that so many Minority Minnesotans vote for and put in a position of power contain our issues to limited and useless areas such as creating more diversity task forces that only has minorities and eliminate mainstream autism committees if it has minority voices, especially if we God forbid disagree with their policies.

Think about that for a minute as this is an election year and they don’t win by landslide votes – rather couple of hundred votes in many districts to several thousand votes statewide. Then, ask yourself if you are a Somali, Hmong, Latino, African American, or any other minority – why should you vote for politicians that ignore, belittle and dismiss your communities through containment or elimination.

Another good example of containment or elimination in addition to Somali autism is all of the legislations recommended by the Council of Black Minnesotans that have more DLF authors than a kid in a candy store, yet none of them seem to have moved beyond meaningless, photo op hearings. For instance, SF 2730 authored by Sen Eaton if you can believe it – I wonder if her left hand knows what her right hand is doing. On one side she wants to eliminate and silence minority autism families, on the other hand she pretends to care and authors the human rights bill. Then, she says there is no money and it is too late, blah & blah. How come she was able to push SF 314 last year which wanted …..get this over $25 million from HHS budget to give it to upper/middle income autism families. But, she can’t find funds or resources for Minnesota department of human rights to assure state agencies are actually hiring fairly and equally and following equal employment laws. Oh please, we are a lot of things in minority-ville, stupid is not one of them. Sen Eaton is not interested in equality or fairness, just look at the bills she pushes. It doesn’t take a rocket scientist to figure that out.

Anyway, SF 2730 when approved can be the cornerstone and the foundation to assure all state agencies, especially DHS, MDH, MDE, DEED and others hire and recruit employees and leadership from communities of color. There are hardly any – zero person of color that represents MDH and DHS in state legislature, yet these agencies are in charge of low income families health. They usually hire 20 or 30+ Caucasian women who has never even been on foot in south or north Minneapolis yet is arrogant enough to think she can speak for us.

Therefore, to MN DFLers – at least those mentioned above, we reject your failed policies & your failed hiring practices, and we will get smarter and not keep circling D’s in voting ballots. We will have different choices including nurturing our own such as Abdi Warsame and Mohamud Noor to take you out in ward
by ward, then district by district to even higher offices across the state. It is possible in case you are thinking of underestimating our voting power.

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

Thanks!

Alright, first – let’s explain to those that are not minority what institutional racism is and how it works. For those that are minorities in Minnesota – you are living in it, even if you don’t realize it.

According to Urban Dictionary – Institutionalized Racism is the process of purposely discriminating against certain groups of people through the use of biased laws or practices. Often, institutionalized racism is subtle and manifests itself in seemingly innocuous ways, but its effects are anything but subtle. Institutional racism as it was originally introduced by Black Power activists can also mean inequality based on race through social, economical and political bias policies.

Therefore, Institutional Racism creates health disparity, education gap, etc. We know that Minnesota has horrible records in everything for minorities – hopefully we are not asking Jack or Jill for any proof.

Sen Eaton who represents a large minority in her district had a bill today in health and human services finance committee SF 1684 that wants to provide better mental illness treatments and prevention. As I sat there listening to her, then to NAMI representative talk about the need then came a caucasian mom who talked about her 29 year old son who went through many mental illness episodes and how the police and mental health community intervened and how well he is doing now.

As one of very few Blacks in these too White health committees, I could not help but testify even though it is not an area I know or even understand too well. But how do you sit through that and not imagine if that 29 year old was an African American man with a mental illness would have been shot by the same police who saved the Caucasian patient or ended up in the criminal system if he had the same violent mental crises.

Yet, Sen Eaton again neglected to even engage and get input from her minority voters, from any other communities of color including Somalis who unfortunately are suffering with a troubling rise of mental health crises. This kind of out of touch, arrogant, dismissing and belittling the needs of communities of color is what creates unequal access which then creates Institutional Racism. Policy makers like Sen Eaton who also wants to dismantle the state autism task force in light of yesterday’s new CDC autism numbers that have increased 30% nationwide has done it again, and enhanced Institutional Racism by writing policies that would affect communities of color without their input or engagement.

In other words, if SF 1864 passes in its current language, there will be no culturally responsive training, treatment or prevention for the 29 year old Black or Latino man who has a mental illness. He will most likely end up dead or arrested. I really hope another Senator adds more inclusive language that assures treatment and prevention is culturally and linguistically appropriate so that irrespective of your race or ethnicity – your mental health condition is treated equally. Imagine if Sen Eaton walked on the ground and actually visited Hennepin County mental illness center where there are many Somalis and other minorities suffering with mental illness, or read this report, then wrote her legislation in a more inclusive and kind way. Instead, Sen Eaton chose again to dismiss and disregard the needs of her minority constituents.

I hope my fellow Somalis and other minorities think about that as we go the polls again this year because unless we clean the seeds – we will never get fruits that are beneficial to our communities. In order to get good fruits, you must plant great seeds and eliminate bad ones like Sen Eaton by voting her out so that she never has the opportunity to create or enhance Institutional Racism through bias and prejudice policies.

Below are some books that I would recommend many MN DFLers to read because so many of them seem to think health disparity or education creates itself. It does not – it was created and is maintained by your bad, failed and belittling policies. Why should we vote for you, if your policies don’t address our concerns?

Here is the language of this bill SF 1864 and notice diversity or cultural responsive is not required:

Racism Without Racists by Author Eduardo Bonilla-Silva:

White Privilege Explained by Tim Wise – Maybe he can educate MN DFLers:

And, if you are still under the delusion that institutional racism does not exist, then read Here:

Or Here: Now the difference between back then and now is, back then they did it to your face and prayed on our lack of knowledge and understanding of what the racists were doing. Today, they do it through bills and legislations, and they still pray on our lack of knowledge and understanding of the legislative system. For example, if you go to any health and human services committee in Minnesota capitol and the room is full, yet no person of color is there. Just look at how there is no Black policy adviser for health or education for Gov Dayton of Minn, Senate Majority leader Bakk, MN House Speaker Thissen or Asst Majority Murphy. In other words, keep us out of the loop and create bias policies that hinder and neglect our health. 

The other difference between today and back then is TODAY – we have the voting power and right to kick them to the curve and elect folks that reflect us and will uplift our communities. 

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

Today was a busy day for Autism, CDC (Center For Disease Control) released new autism numbers through their eleven ADDM (Autism Developmental Disabilities Monitoring) system. The new ASD (Autism Spectrum Disorder) rates increased by about 30% from 1 in 88 to 1 in 68.

In other words, 1 in every 68 U.S children have a diagnoses of Autism based on records of eight year olds in eleven states using the ADDM method. New Jersey had the highest and Alabama had the lowest. Note – Minnesota does not have the ADDM surveillance system or even applied for it at CDC. Maybe they will this year since our Somali autism study that came out in December of 2013 used the ADDM method which now gives our state some experience in autism surveillance.

Right away, autism bloggers, news makers, public health officials and advocates stated their views ranging from better diagnoses to actual higher incidence cases to more awareness of autism now as being the reason for the new higher ASD numbers. Personally, I am not sure how I feel about this. I understand there is clearly more awareness, maybe even doctors are diagnosing more as a result of that awareness. I just wonder if that is the sole reason for the increase. If such is the case then where are all of the adults with autism especially those on the classic or severe end of the spectrum. Of course, we don’t have adult autism surveillance system since ADDM is only for children.

However, in our Somali community whereby majority of our children with autism are nonverbal, if autism existed and we just didn’t see it – where are the nonverbal adults. I have never seen a nonverbal Somali that is thirty or forty years old. Autism is not a medical condition that one could say – well maybe they died at birth or young. Therefore, we would have seen Somali adults born and raised in Somalia who are nonverbal. I just don’t see that.

I know – everyone has their take and everything autism is always controversial, exhausting and diverse. Nevertheless, I think there is a different factor for this increase that keeps only getting higher and higher. There has to be some genetic component when added to some environmental factor is triggering autism. Which gene and which environment is the million dollar question that lies heavy on autism researchers and parents alike.

Yes, I know there are those that will say – my child was just fine until I did xyz and that caused autism. I am not sure if it is that simple either. I mean think about it, the human brain is so complex, confusing and really not understood fully yet. To say it is only an outside environmental factor can not justify the increase.

I saw a lot of blogs that blamed the president and CDC today which I can totally understand. However, in his defense, I think President Obama’s Brain Initiative that the White House announced last year’s world autism day might be the best vehicle to get us closer to even narrowing of a cause. I think a cure of the symptoms and which therapies are best might be years away, if not decades.

One thing that I did not notice in today’s autism news and blogs from at least the Federal government and our MN state health department was a sense of panic and urgency. Autism was 1 in 10,000 not long ago in our lifetime and today it is 1 in 68. I think that calls panic and distress from state and federal public health folks. Unless they are waiting when it is 1 in 2. We need as a nation and as a state a holistic and tangible way to deal with and support autistic children, adults and families. And I really did not see that level of hitting the public health panic mode.

In fact, our governor or our state health department commissioner did not even blink at the new numbers. I think that is sad – their inability to assume business as usual when our lives are nothing but business as usual.

Below are some information on today’s news.

CDC Releases New Autism Numbers:

U.S Department launches new watch me thrive program:

ACF Blog:

And, our IACC Chair Dr. Insel & Director of NIMH did a wonderful and thoughtful Post on his Blog:

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

I know why such harsh request – before you say blah and blah. Let’s just look at some history of how other autism moms and bloggers have always asked similar requests since the beginning of time for those in charge of autism in state and/or federal levels to be fired.

CDC director and most CDC autism folks have been at the receiving end of this. NIH and NIMH probably daily an autism parent or blogger is calling for their firing. Even Autism Speaks leadership is asked to fire someone or other including me which was Peter Bell.

Thank God – he quit or maybe got fired – who cares, he is gone now from being the director in charge of all family engagement and autism policies at Autism Speaks. There is even rumor Autism Speaks’s previous president Mark R whom I personally liked was canned.

Then there are those that disagree most folks at public committees including IACC, some even protested when I was nominated by Sec Sebelius saying I was a government puppet.

So, I totally get it and I can take it because autism is emotional, complex, confusing, diverse, full of disagreement and heartbreaking. It ain’t easy, but for those of us that are parents – we simply have no other choice but to walk in this heat.

Now, let’s go back to MDH (Minnesota Department of Health) and their department in charge of children with special health care needs which includes autism.

First, Ms. Dalbec does a horrible job in community outreach. She has not done any.

2nd, Ms. Dalbec is the person behind MDH refusing to share any resources for autism from HRSA autism grant in 2013 with minority based agencies.

3rd, After years of asking – MDH website and phone line still fails to meet the Federal CLAS guidelines (culturally and linguistically appropriate services) In other words, if you take Federal funds which MDH does then they should have a phone line and a section in their site for non speaking English folks. They don’t and Ms. Dalbec is totally clueless about this.

4th, More Somalis and others are afraid of immunizations and have made the connection to autism which means Ms. Dalbec has failed explaining it well and providing information on it.

5th, Ms. Dalbec apparently did not understand the difference between managed care and fee for service autism services. So, how can MDH really be in charge of explaining services if their leader herself does not understand simple policy.

6th, Ms Dalbec was behind the elimination of the state autism task force and was helping Norton to silence autism families. State agency folks should stay neutral and not interfere in legislation that dismantles parent power. Dalbec decided to break that trust.

7th, Ms. Dalbec has never held any workshop for Somali or minority autism families.

8th – well you get the point and that is too many problems for MDH to keep someone who clearly is not qualified, lacks empathy and knowledge.

Therefore, we ask that Commissioner of MDH hires someone for autism that cares and is always in the corner of autism families regardless of their color, race, ethnicity, religion, etc.  Ms. Dalbec is not the right person and this is not a job for a cold hearted person.