Monthly Archives: August 2014

Comments Off on Who Assures MN ABA Centers are Safe, Secure & Appropriate for Autistic Children – Shouldn’t DHS

Alright so, I have a love/hate relationship with many Minnesota ABA centers. I love the method of ABA and how it can teach almost any skill to a child. I have the opposite relationship with many of the ABA owners. Where is the disconnect and why is there a disconnect.

Most of these ABA centers are run and were started by mostly autism parents, which are good right, not so fast. Initially, they start because of their children then somewhere either greed or racism happens. Then there is the Minnesota Department of Human Services which has almost no policy or oversight for ABA centers. Let’s explain a little deeper;

First – ABA method really works if it is done intensively for younger children usually younger than 7  or 8 years old as research has stated. ABA can also work and help older children, but definitely not 40 hours. In other words, a two, 10, 15 and 20 year olds should not all be prescribed 40 hours of intensive early intervention therapy. This is where DHS fails because it never questions or asks for evidence and objective opinions.

2nd, many MN ABA providers hardly take minority children when they are young and can most benefit from the intensive therapy, yet DHS has hands off approach whereby no provider is asked to follow no anti discrimination law.  I have seen ABA providers use the excuse of we are a private company, but that does not mean they can or should discriminate against minority children. But they do constantly and consistently with no policy from DHS to assure it does not happen.

3rd, someone can just get an in-home DHS ABA certification then open gazillion ABA centers and DHS does not inspect or care what the building looks like, if it has safety measures, if it has natural disaster protection areas, if it is appropriate for kids to learn and be safe. In other words, a person can put 10 kids in a room of 10 by 10 feet and DHS could care less because they have no policy to inspect nor do they have guidelines of what an ABA center should look like. To make a similar analogy – let’s say you open an in home child care then decide to use that license to open a childcare center. DHS would have you for lunch by breakfast because the requirements for in home is very different than the requirements for a center. Keep in mind children in childcare are mostly healthy and can tell their parents what happened. Autistic children even if verbal can’t always articulate what happened, yet there are no guidelines or policy to assure their safety or protection by the human services department that certifies them and is paying for their services. What is wrong with that picture?

I have seen and heard autism parents complain their children came home with unexplained bruises from ABA centers, yet were denied the opportunity to visit their children un-announced. Think about that for a minute. You leave your autistic child in a center, he/she has obviously gotten hurt and you the parent are not allowed to come and check on them. Yet, MN DHS still approves this – WTF?

I have seen many Somali childcare centers have un-announced and un-invited visits from DHS inspectors and rightfully so. They cite them everything from not having the bathroom close enough to the kids learning area, to the emergency book was not in plain site, to too many kids in one area, to the staff hired were not properly checked, to you name it. By the same token, our kids who are so much more needy and vulnerable have no such oversight or inspections from DHS. WTF?

Here is my friendly and gentle recommendations to DHS:

1. An in home vs. center vs. school ABA/mental health certification should be all-different and there should be appropriate rules for each kind.

2. Come up with guidelines to inspect ABA centers and buildings to make sure our kids are safe, secure and learning in an appropriate environment.

3. Make sure no ABA provider denies any parent the right to visit their child whenever they want without calling or making appointments.

4. Make sure all children are not given a one size fits all hours or programs. Instead treatment plan should be child focused, culturally appropriate and family driven which is what the CTSS guidelines actually state, yet most ABA centers have no idea of this nor care about it.

5. Make sure children are actually learning and parents can ask about their kids programming without being afraid of being discharged or being labeled the difficult parent because god forbid they asked questions about their kid’s program.

6. Make sure DHS can visit & inspect any ABA center or provider anytime with no appointment so that treatment and physical space is always safe and appropriate healthy learning environment.

7. Make sure ABA providers collaborate with the child’s team of speech, OT and education since autism affects all of those areas. In other words, ABA providers should not dictate and bully parents into their way or the highway.

8. Make sure you are keeping some kind of racial record and if a provider has one or zero minority children – it ain’t because they did not apply. It is because that provider is racist either sub-consciously or on purpose and maybe train them on CLAS guidelines which are mandatory for any medical entity getting federal funding including MA coverage.

9. Make sure ABA providers give parents names and list of advocates if they need it and enough time to bring one if the need arises.

10. Finally, protect our autistic children the same way you do children in child care centers because it is you – DHS that should assure our kids in any clinic or center are safe and learning appropriately. You provide the funding and the license/certificate, and you must have better oversight and guidelines as well.


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

Idil – Somali Autism Mom & Minority Advocate

Category: Autism Policy

Comments Off on If I knew Then What I know Now – Would I Have Given My Black Autistic Son the MMR Vaccine?

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

Comments Off on Defending Dr. Marshalyn Allsopp at the Center For Disease Control & Prevention

Alright so, I think we all heard by now that there is a CDC senior researcher that is stating CDC hid or omitted some numbers indicating African American male children have a higher risk of autism when given the MMR vaccine on schedule. Dr. Thompson was among those scientists along with Dr. Allsopp and Dr. Boyle among others in 2004 study which stated there was no link between MMR and Autism. It seems that now 10 years later, Dr. Thompson is having regrets because there were some data or numbers that were left out of the study.

Then Dr. Wakefield released this video making the connection of Tuskegee medical experiment on Blacks and CDC deliberately leaving data out for Black boys. Wakefield is a lot of things, but stupid is not one of them. My guess is he used that analogy because he knew it would provoke raw emotions in particular against Dr. Allsopp who is an African American Researcher at CDC and was part of this 2004 autism and MMR study. For the record, personally I like Dr. Wakefield. I think he is charming, charismatic and in his own way cares about autism families. I know he gets beat down because of his own study and how he got paid by this or that. On the other hand one can make the same analogy with previous CDC director who now works for Merck which manufactures vaccines. In other words, I think we all do what is best at the time with what data and information we have.

So where does this leave us and what happens now in moving forward. As I have said many times, I am not a researcher nor pretend to play one anywhere, but I know Dr. Allsopp and she is an amazing researcher and one of the most sincere people I have ever met during my autism advocacy. Dr. Allsopp knows what it is like to be a minority especially an African American woman in the south, she went through hell and back to reach where she is today. I remember I once asked her how she deals with racism and she said “the best payback is success in your own life”. I have sought and received Dr. Allsopp’s advice and wisdom many occasions about racism and autism. She has always told me to do my best and help those behind me by example. If you can believe it – I once contacted the White House and asked them to assure more diverse members in IACC and they said to send my suggestions. (I know the White House would actually care about my suggestions). I called Dr. Allsopp and asked her who I should recommend and the first thing she said was let’s make sure we get those that don’t just look like us, but will speak and advocate for minority autism families and children.

Dr. Allsopp is thoughtful, kind, shoots from the hip and she has put me in my place many times and rightfully so. Dr. Allsopp is one of the main reasons we had diverse folks in the Somali Autism Study done by the University of Minnesota. I remember when the guidelines were being written for the grant – I called Dr. Allsopp and asked to please make sure there is a community portion. And, if you follow my blog here then you know when UMN finally got that grant – the first three people they hired were non Somali and non-minority. They hired three Whites and sent them to CDC about a Somali autism study that was advocated and made possible by Somali autism parents for Somali autism children. Well – you can imagine how livid I was. I called Dr. Allsopp screaming and cursing probably in Somali and English and Dr. Allsopp calmed me down and said – CDC will fix this. As a result, UMN added Somalis to those doing the research. So, I know Dr. Allsopp & there is no way in hell – she would harm any minority child.

Therefore, I stand-by and defend Dr. Allsopp 100%.

I do however hope that CDC comes out with a stronger statement than this or comments and explains their 2004 study, how and why some data was taken out and what it now means for the millions of autism families in this country. For the record, I did ask CDC director’s office to send me answers regarding this because we can’t just pretend it did not happen. I also contacted the law firm representing Dr. Thompson and asked if Dr. Thompson is standing by his claims and they said yes he is. The only thing he did not like was that Dr Hooker taped their conversations and Dr. Wakefield put his name online without his permission. In other words, his lawyers are saying Dr. Thompson is now saying CDC took some data out which stated Black boys were at a higher risk for autism if given the MMR vaccine on time. Therefore, given the many problems our Somali autism community has with Minn dept of health and their inability to help families and the community’s fear of autism and rightfully so. It is best if CDC came out with much stronger statement and really explained what happened, why it happened and what do we do now. Given this study and this study, I think ignoring will only make more parents not trust CDC which will have much worse public health consequences.

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

Idil – Somali Autism Mom & Minority Advocate



Comments Off on Can Autism Speaks Ever Do What It Says For ABA Coverage and Minority Families

Alright, so if you know me or read my blog then you understand my love/hate relationship with Autism Speaks. I love their research functions, I despise their ABA advocacy functions. First of all – their president Ms Feld walks on a high horse. Actually, I think the horse she walks on has another horse it rides or something. I mean she is really far removed from what is happening on the ground with autism families especially low income and minority ones. Even their leadership has zero African American person. What does that say about them? Think about that and how can Autism Speaks then speak for all of us.

I can’t even count how many times I have had conversations in public and private with Autism Speaks’ advocacy folks. And, they always tell me they care, they know, they understand then they go out and only advocate for the wealthy mostly non-minority autism families with private insurance. Really, they are getting on my last nerve. I wonder if their left hand knows what their right hand is doing. Seriously I wonder about that because they seem to talk from both sides of their mouth. They remind me of a child that always says to their parents – yes mom/dad, ok I will do that then turns around and does the opposite of what he/she told their parents.

I can’t really understand why Autism Speaks can’t speak for all autism families – rich, poor, Black, Brown and White at the same time for the same ABA coverage. How hard can that be? in fact it might actually be fun and equal.

For example, we now know that CMS will cover ABA autism therapy in all states, but states have to ask and put it under their EPSDT Medicaid plan. This is really good and Autism Speaks can ask whatever state they are advocating in for both coverage of Medicaid and Private insurance, right? But they don’t – they go to each state like they are now in NC asking for private insurance coverage, but not for Medicaid coverage. Why the heck not advocate for both?

Remember when Michael something came to MN and testified in our state legislature for only private insurance families and we said to him and to the legislator – no way/no how. If you are going to dictate and demand private insurance companies you don’t even own to cover for autism therapy then you better demand and dictate MN DHS to cover the same. And we prevailed which is what happened when MN state legislature passed MA and private insurance autism therapy coverage. But of course, we are not in every state and sadly Autism Speaks does not seem to learn any lesson of equal access by just advocating for the same equal access for all kids. This frustrates the crap out of me.

My humble advice for the remaining dozen or so states that Autism Speaks has not yet created racial autism disparity is when they come to your state demanding private insurance coverage – fight them. They might have the K street type lobbyist, but you have the ability to vote for those making the decision and they will hear and listen to your voice. So, fight Autism Speaks and tell them unless they are there to help everyone then they should get out of your state. If that does not work and they overwhelm you, then do what FL and WA did. Sue your state Medicaid agency for unequal access to autism therapy. If you are from Somalia or any other minority advocacy agency fighting Autism Speaks for equal access – feel free to contact me. I would be more than happy to help you and share what we did here in Minnesota. Autism Speaks might have the big bucks, but we can win.

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

Idil – Somali Autism Mom & Minority Advocate

Category: Autism Policy

Comments Off on Can White Reporters Tell Our Story or Struggles? At least from Autism’s view – Heck NO

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

Comments Off on Statement From Dr. Thompson of CDC Regarding Autism, MMR and Black Boys & It’s Not Good

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.

August 27, 2014 Press Release, “Statement of William W. Thompson, Ph.D., Regarding the 2004 Article Examining the Possibility of a Relationship Between MMR Vaccine and Autism”





My name is William Thompson.  I am a Senior Scientist with the Centers for Disease Control and

Prevention, where I have worked since 1998.

I regret that my coauthors and I omitted statistically significant information  in our 2004 article published in the journal Pediatrics. The omitted data suggested that African American males who received the MMR vaccine before age 36 months were at increased  risk for autism. Decisions were made regarding which findings to report after the data were collected, and I believe that the final study protocol was not followed.

I want to be absolutely clear that I believe vaccines have saved and continue  to save countless lives.  I would never suggest that any parent avoid vaccinating children of any race. Vaccines prevent serious diseases, and the risks associated  with their administration are vastly outweighed  by their individual and societal benefits.

My concern has been the decision to omit relevant findings in a particular study for a particular sub­ group for a particular  vaccine. There have always been recognized risks for vaccination and I believe it is the responsibility of the CDC to properly  convey the risks associated  with receipt of those vaccines.

I have had many discussions  with Dr. Brian Hooker over the last 10 months regarding studies  the CDC has carried out regarding vaccines and neurodevelopmental outcomes including autism spectrum disorders. I share his beliefthat CDC decision-making and analyses should be transparent. I was not, however, aware that he was recording any of our conversations, nor was I given any choice regarding whether  my name would be made public or my voice would be put on the Internet.

I am grateful for the many supportive e-mails that I have received over the last several days.

I will not be answering  further questions at this time.  I am providing information  to Congressman William Posey, and of course will continue to cooperate with Congress.  I have also offered to assist with reanalysis of the study data or development of further  studies.  For the time being, however, I am focused on my job and my family.

Reasonable scientists  can and do differ in their interpretation of information. I will do everything I can to assist any unbiased and objective scientists inside or outside the CDC to analyze data collected by the CDC or other public organizations for the purpose  of understanding whether  vaccines are associated with an increased  risk of autism.  There are still more questions than answers, and I appreciate that so many families are looking for answers  from the scientific community.

My colleagues and supervisors at the CDC have been entirely professional since this matter  became public. In fact, I received a performance-based award after this story came out.  I have experienced  no pressure  or retaliation and certainly was not escorted  from the building, as some have stated.


Dr.Thompson is represented by Frederick M. Morgan,Jr.,  Morgan Verkamp, LLC, Cincinnati, Ohio,


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


Comments Off on Minnesota Primary Elections & What They Mean for Autism in Our Community

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.


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

Idil – Somali Autism Mom & Minority Advocate

Ferguson Happens When We Don’t Vote

Comments Off on Ferguson Happens When We Don’t Vote

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.


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

Idil – Somali Autism Mom & Minority Advocate



Comments Off on Autism Cares Act of 2014 Signed Into Law By President Obama

alright, so by now we all heard that President Obama signed the Autism Cares Act into law on Friday August 8th, 2014. This law extends IACC (Interagency Autism Coordinating Committee) which I serve as a public member nominated by Previous Sec of U.S HHS Sebelius. It also continues many Federal autism programs in various Federal agencies, such as HRSA, CDC’s ADDM sites, NIH’s research activities and so much more.

This new act is good for five years which is more than the last act that is to sunset Sept 30th, 2014. There are many important and good things within this bi-partisan legislation. First, it has autism related services, training and information must be culturally competent. Let’s explore what this means. For starters, main stream agencies that usually hog the services can no longer do that and must provide their services and information based on the families culture and understanding. For example – when Pacer does kazilian webinars for mainstream autism families and nothing for minorities will no longer be acceptable. This means HRSA which usually funds these agencies including state health departments must be vigil in assuring there is equity and equal access to information and resources. It also means state health departments such as MDH that usually just give the HRSA funds to local public health counties must find a way to assure the counties are doing their work in a manner that is culturally competent.

Another good and new thing this act adds is services for young adults and adolescents which are sadly often forgotten as if autism goes away after a child reaches teen or adult. Autism is a life long disorder and services and resources including higher education, employment and housing must be part of the strategic plan. This act also has a person to be appointed by U.S HHS as an autism appointee which I think is fantastic. Plus, this act expands the public members by including members nominated by Congress which I also think is a good idea given IACC plan goes to Congress.

Overall – it is a good legislation and a step in the right direction. Sadly, as I said in my blog before – my Federal advocacy ends here by Sept 30th 2014 when current congressional act expires. If there was a person that I hope replaces me would be Anne Harrington. Anne in my opinion is the perfect and complete package. She is Caucasian, has an adopted African-American son with autism, has worked in the education system for years, is a policy advocate and a trained autism therapist in developmental behavior which is most often missing in IACC membership.

I think Anne would be perfect. Plus she is the most down to earth, humble yet so knowledgeable person I have ever met. Anne is always in the corner of autism families irrespective of their race, color and socio-economic status. If I could suggest one person, it would be Anne.

Finally, if you ever wondered how this autism act of 2006, 2011 and now 2014 got started. It was started by parents from NJ who went to Congressman Smith from NJ. Smith wrote this bill back then with Congressman Doyle and they have been a champion for our families ever since then. The point being autism parents have such a huge impact on policy and change, especially when combined with thoughtful and sincere legislators. I met Congressman Smith once in 2012 and when he speaks about autism, his body language really says more than his words. He cares and he means what he says and does what he promises.

Here is my friend Matt’s blog post on this new bill. Here is the White House Blog on it.

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

Idil – Somali Autism Mom & Minority Advocate



Category: Autism Policy

Comments Off on Response To Mr. Dan Browning’s Story On Me – Shaping The Message Shapes Policy

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.


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

Idil – Somali Autism Mom & Minority Advocate