Monthly Archives: August 2013

SRP Sub-Committee of IACC Meets

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The Services, Research and Policy which is a sub committee under IACC (Federal Autism Committee) met today. As you know, the co-chairs are Denise from AHRQ and David from Univ of PA. The writings of this blog are solely my opinions and no way or shape reflect IACC or SRP.

I am a member of this committee and first I must say that there are not enough good words to say about Dr. Mandell. I simply call him Dr. ManDastik. David has researched and published so many autism studies including many on autism disparity. He is such an amazing researcher, yet so humble and deeply listens to other’s views and ideas. What more can an autism mom who is very much interested in autism disparity ask for.
We had two topics to talk about today;
First, Adults and autism. What services are currently available, what services and resources are needed given that autism is a disorder that lasts a lifetime. 
In this area, I would like a way for parents, families and care-givers to have a hub or a place with resources from transition from high school to college (if can) to employment (if can) to housing to recreational activities to support that is culturally and linguistically appropriate. There are many areas and sites to get information, but not one good place. NOW under ARC National has been funded by US. HHS, but I don’t think they have done a good job in connecting adults with autism and their families to appropriate support, services and resources. 
The 2nd item on the agenda was disparity in under-served communities. This area – I am very much interested given that I am a minority person and the secretary picked me because of my interest in helping those that have been traditionally under-served. 
As usual, David and Denise had great ideas in how to not just keep saying autism disparity exits, but how can we as a nation address this with concrete ideas and plans. My personal take is the problem lies with many of the US. HHS Federal agencies that keep funding state health departments despite their horrible inclusive records. In other words, HRSA, SAMHSA and others keep giving child and maternal health block grants, mental health grants, etc to the tune of hundreds of millions of dollars without any real way of measuring disparity reduction plan. In fact, many state health and human services departments have no plan other than tell us “we know we are not doing a good job reaching out to communities of color”. If I hear these meaningless words one more time, I am going to scream. 
Yet, the funds keep coming year after year after year with no measurable success by state health departments. This means the problem is really the Federal agencies and their policy makers because insanity is doing the same-thing and expecting different results. 
So, what can minority and under-served communities do? Well as the saying goes those in charge of these agencies get their funding from Congress who get hired by the people. Therefore, if people asked and demanded real change that makes a difference then it will happen. But if we keep voting for the same politicians who hire the same agency leaders who keep funding the same state agencies who keep ignoring our communities then we can only blame ourselves. 
Vote Wisely and keep asking questions and demanding equal access for all children and people with autism regardless of their income, race and nationality. 
We also talked about autism and co-occurring medical conditions which many folks were interested and have been advocating for especially SafeMinds and others. This is a tricky area because so many children with autism can and do have medical symptoms such as GI issues, Immune problems, etc. The problem is there are not much research on it, nor is there any proven medical interventions for it. I am hoping this area – IACC can recommend more adequate research funding as well as more awareness in pediatricians and family doctors. For example, when parents talk about their child’s medical symptoms – most doctors just brush that off and assume it is just autism behavior problems. The full IACC committee decided to have a subcommittee that will address this important topic. I am excited to see how this goes given that the new American Academy of Pediatrics Dr. Perrin acknowledged this huge problem when he visited IACC in July 2013. 
Idil – Somali Autism Mom and Minority Advocate

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Comments Off on 50 Years Later – Where is the Progress? Shall we wait another 50 for it?

Fifty years ago in 1963, an immensely talented African American man uttered words that would change American history. Let freedom ring, I have a dream that our children will not be judged by their color, but the content of their character. This speech no matter how many times you read can make you learn and grow as a human being.

Here is the text of the full speech – I highly recommend framing it and posting it in your house and teaching your children about it.

It was 100 years before President Lincoln’s Emancipation Proclamation. And, as Dr. King’s eloquent and heartfelt speech states it – there were still sufferings in equal rights, economically, employment, housing, health care, and justice just to name few.

This speech was the tipping point for the Civil Rights Act of 1964 which outlawed discrimination based on race, national, gender, religious, school segregation and public accommodations. Of course, many others followed including the 1965 and 1968 Civil Rights Acts.

All of this bloodshed, lives lost, generations suffered so that the next generation of African Americans would not have to go through the same pain and frustrations.

Fast forward to 2013 – 50 years later after the famous MLK speech and 150 years after Lincoln freed slaves. Black unemployment is the highest it has ever been and Minneapolis takes the cake of being the worst. Black education gap is higher than ever, Minnesota almost takes the cake – it is #48 worst out of 50 states. Black home ownership is at its worst, guess where it is the worst – wait for it….Minneapolis. Health disparity and gap for Blacks is at the bottom and Minn again one of the worst for health disparity gap even though it is one of the healthiest states. I can say more, but I am getting a headache.

As a Black autism advocate, I had the hardest time getting policy makers to understand equal means equal in Minnesota state legislature this year. It is why we need to rethink who we vote for and why. If we keep voting the same way, we will be at the bottom of every stat in another 50 years. If we don’t wake the heck up and demand equality means equality in employment, in opportunities, in education, in health care access and in justice, our children will be in worse shape. And, that is not a good legacy for any parent.

We need to fire and not vote for again any legislator who writes, votes and pushes unequal legislation or policy similar to the one Rep Norton has pushed for years for low income autism families who are disproportionately minorities. We can not afford to vote for the same people and somehow expect different policies.

On August 28, 2013 – there will be countless celebrations and remembrance across the country including one in Minneapolis. Here is the link and I urge folks to go and participate so that we are not asking for simple equality for another 50 years. Enough is Enough and the time for equal access to good education, healthcare & economic opportunities is today. I also highly recommend new immigrants from Africa go to these events and really take in and learn how our freedom today came about. We stand on many shoulders of African American leaders and we need to leave a better mark and policies in place for the next generation. Please note the Mpls events will take place on Sat Aug 24th, 2013.

Vote Wisely!

Idil – Somali Autism Mom & Minority Advocate

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Comments Off on What is good for the Goose is good for the Gander, right? Not so fast

As many know by now Abdi Warsame has won the MN DFL caucus to be the next city council member of Ward 6 in Minneapolis. To give a little back ground, Mr. Warsame did not just win, he knocked it out of the park with tons of votes.

Further, Mr. Warsame had a plan and a vision by working on the redistricting of this ward to assure that East African population was in the same district so that they can elect one of their own. If you hear this guys story of why he did this and why he chose to run, the hair of your arms will stand up. His story is inspiring and he tells it eloquently. Mr. Warsame gives hope to thousands of young Africans and other minorities that one day they can represent themselves, they can write their own policies and govern their own communities. He is the true deal.

Fast forward to today which unfortunately, the current city council member decided to defy the system and not leave graciously. To make matters worse, Mr. Martin, the chair of MN DFL sent out a letter to Minnesota democrats asking those running against another fellow candidate in a different ward 3 to respect the process, and not run because he won that caucus.

I guess my question then is if what is good for the goose is also good for the gander, why didn’t Mr. Martin send a letter on behalf of Mr. Warsame and ask his competitors to respect the DFL process and leave graciously?

My guess is that Mr. Martin and so many like him are still under the impression of we will talk for you, write for you and govern you. This is a bad policy at it’s core and Mr. Martin should do the fair and EQUAL thing and send out similar request for Mr. Warsame who after all won fair and square in his caucus.

If not, then we as minority communities need to rethink how we vote, who we vote for and why.

Insanity is voting for the same people and somehow expecting different policies. Listening to Mr. Martin when he is clearly practicing double standard is not going to empower our community or inspire our children.

Below is Mr. Martin’s letter to DFL supporters and I guess I am waiting when he will send out similar one for Mr. Abdi Warsame who deserves equal treatment. He even asks people to donate and indicates that historic DFL caucus. I am sorry, but are you kidding me. Who the heck in Minn or the world does not think Mr. Warsame made HISTORY? Will the real slim shady please stand up here, I mean seriously. Take a read below and you be the judge:

In the Third Ward Minneapolis City Council race, Jacob Frey demonstrated that our caucus and endorsing process works. His campaign drove the highest caucus turnout across Minneapolisand mobilized a diverse super majority of supporters to win the DFL endorsement on May 4.

But, after this record-setting turnout and a sea of red “Frey is my guy!” t-shirts at the convention, Council Member Hofstede went back on her word to abide by the DFL endorsement. We must show that the DFL endorsement matters and should be respected.

You can do so by helping Jacob reach his June fundraising goal of $10,000. He’s already 50% of the way there, but needs hundreds of donors standing with him. Every dollar counts. Please click here to rush your contribution of $10, $25, $50 or $300.

Let’s show that grassroots organizing can trump even the biggest of machines. Let’s show that the DFL endorsement process matters. Let’s do all this by helping Jacob towards another record-setting turnout … this time on November 5. Jacob has made history in this election and will continue to do so with your help.

We deserve better and we deserve equal treatment from Mr. Martin and his allies in MN DFL. I know this is not my usual topic for a blog, but if we are to think policies that affect our lives directly or indirectly come from politicians then we need to pay attention to those writing such policies and they must be fair by leveling the playing field for our own candidates. If you live under a rock and did not hear this, here is Mr. Warsame’s site for more information.
Vote wisely!


Idil – Somali Autism Mom & Minority Advocate

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Comments Off on Sen Franken in the HELP Committee – A waste or Not?

As many remember Senator Franken who was a comedian and a Hollywood darling won the senate seat with ONLY 312 votes in 2008, after a contentious fight with incumbent Sen Coleman.

Sen Franken has been a member of the HELP Committee in the Senate since then. Now, this is probably the most important committee there in terms of Health, Education, Labor and Pension. Yet, Sen Franken has failed, flipped and flopped here similar to a Saturday Night Live Sketch.

Let’s dig deeper;

When Sen Franken very narrowly won over our favorite Senator Coleman, we went to his office and asked if he would continue the great work started by Sen Coleman who was the first person that recognized our autism concerns and not wrote a letter to Gov Pawlenty, but to CDC and NIH. It was very surprising to see Sen Franken’s staff to be mighty arrogant for winning by just 312 votes. First, they ignored us then they said Gov Pawlenty is a different party so whatever Sen Franken asks will not be listened to. Then they told us Sen Franken is simply too busy for autism and the Somali community issues.

Then after Gov Dayton won in 2010, we went back and asked again if they would write letters on our behalf and ask the new health commissioner to address autism by continuing the previous commissioner’s work. And this time we were told – wait for it….

Ah, we think Gov Dayton’s administration is doing a good job for autism. Now what now?

Then they finally allowed us to meet Sen Franken who promised lots of things including writing a letter to Sec Sebelius to assure diversity in IACC. Sadly, most of his promises have been ignored by his arrogant staff again.

Fast forward to 2013, I hear Sen Franken is going around the Somali community businesses, shops and stores bragging how his office helped with autism. Now what now?

I even got a letter congratulating me when I was appointed to IACC. What – Sen Franken had nothing to do with it. Yet, he wants to take credit. In fact, it was Congressman Kline who wrote a letter to Sec Sebelius. But that does not stop Sen Franken claiming credit for things his staff ignored, disregarded and dismissed.

In addition, when we asked them to hire Somalis, we were told they just are not qualified, even though many of the applicants were highly qualified. By the same token, they keep hiring staff of minimum effort with careless attitude.

Further, many have heard the difficult times HBCU’s are having with Sec Duncan and the U.S Dept of Education, yet Sen Franken is MIA in helping them so that these historic Black Universities don’t close where thousands of students have suffered. See more here.

So, what can we do now? Well – thankfully Sen Franken is up for re-election again next year and we should do everything we can to make sure we get someone who will represent all of our concerns in Congress. Someone who will not play partisan politics and will just represent us. Unlike his SNL character I’m Good Enough, I’m Smart Enough, and Doggone It, People Like Me. It seems to me that minorities are not good enough or smart enough to be Sen Franken’s policy advisers or hold important positions. I think it has been a waste to have Sen Franken in such important committee and accomplish so little for Minnesotans.

The time to defeat Sen Franken is now. We need a real leader in Congress.


Idil – Somali Autism Mom & Minority Advocate.

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The Sandra Fluke Theory and Autism

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Remember when the committee on Oversight and Government Reform decided to talk about women and health care, but they forgot to include in their panels a WOMAN.

So, last night – MN Autism Task force held a meeting which I did not attend because they said my views and opinions will not be discussed. This is a legislative directed autism task force see below in that charge. No where in that bill does it say minority voices will be silenced. In fact, when the previous task force was writing the charge for this task force – they conveniently wrote it and excluded minority representation even though I was a member and just happen to be absent that day. 
Well – needless to say, I fought with tooth and nail and said no minority inclusion – no peace. Thankfully the author of the bill, Rep Mack who is simply fantastic said my ideas were good and that we should take out having specific agencies and instead have mainstream and minority autism advocacy agency representation. What a simple and fair idea, Thanks Rep Mack.
And, that is how this current task force membership was created. Move forward to last night, which we got Rep Norton (The Queen of autism disparity – not a typo) who replaced Rep Slawik (the reasonable one) told us she would get some mediation company who would be objective and neutral in helping us write some guidelines which we don’t need and already have a legislative charge. To make matters worse, this so called neutral company removed my views from the get go. Their reasoning – wait for it….it was not what the majority wanted. You think! And who the heck are the majority anyway. And to be neutral one should not take sides, apparently not by them. What a shock, someone Rep Norton knows who is bias from the gate, what a great way to be objective and neutral by excluding some. Awesome!
Let’s dig deeper. The majority who oppose my views and ideas are Rep. Norton (remember when she kept telling us the sun rises from the West and MN DHS paid for ABA autism therapy) It turns out the sun rises from the East and MN DHS did not pay for ABA Autism therapy. Hence, why the MN state legislature just passed this year to pay for, wait for it ….. ABA autism therapy. Rep Norton also wrote a bill that would have given the wealthy autism family unlimited hours and age ABA autism therapy – while the low income child was only up to age 7 years old. Can you believe that and we are not suppose to say that is unequal, unfair, bias and discriminatory policy. Are you kidding me – we are a lot of things, but stupid ain’t one of them. Rep. Norton needs to own and defend her policies. 
And, Sen Chris (I still don’t know how she won unopposed – really anyone could’ve defeated her – total clueless on many issues including the difference between ABA and PDD – NOS. Imagine that not knowing the difference between a diagnoses and a method of therapy). So, these two who are totally overrated and should be easily defeated next election are the majority. Oh and MDH’s new representative who I am not sure what to say other than. MDH does not hire based on merit or competence. And the last one is the representative from Pacer who as I blogged before just hogs federal and state autism funding while delivering mediocre record in improving disparity.
These folks decided to talk for and about autism, minority and diversity without actual minority autism community. Therefore, the Sandra Fluke theory of we know what you need and we will talk for you without you happened last night at the MN Autism Task Force. 
One of my favorite rules they came up with is we will remove a task force member who we don’t like or agree with in policy. And, we will have rules of what parents and others can or can not say in blogs or other means in their own time. Are these people kidding me. Do they live in an egg shell. I have to believe they don’t read autism blogs or follow soooooo many other autism parents who are way more vocal than I could ever be. Imagine if they were tried to be silenced. Heck – imagine if Rep Norton silenced me when she was trying to sell us ABA is covered by MN DHS. We would not have the amazing new legislation just passed by MN state legislature of guess what – that is right, covering and paying ABA autism therapy. And, if that existed then there would be no need for a new legislation, right. 
That is what common sense person would say, not Rep Norton or Sen Eaton. To them if they tell us the sun rises from the West then we better believe it. And, if they want to pull a Sandra Fluke thing and speak for us without us then we better thank them for it. I mean even Morgan Freeman only drove Miss Daisy in one movie, but Norton and Eaton want us Black folks to keep driving and buying their out touch policies that are wrong in every turn. 
Finally, my other favorite and stupid rule was when they said – we should talk in private about autism task force. Ah – this a public autism task force and should follow open meeting laws which is every decision made there should be public and debated publicly. Imagine arrogance and ignorance mixing, sort of like water and oil mixing. Not good right. Well neither are policies and stupid rules coming from Norton and Eaton or anyone who can’t just read the actual charge and follow it.
So, what happens now and how do we fight such completely out of touch policy makers. At the ballot with our votes, by protesting with our voices, at every corner with our opinions and with our ideas in every district. They are easily defeatable if we unite and look at their policies and not let them bully us for disagreeing with them and standing for our children and our communities. 
It is people like them that not only create disparity and discrimination policies, but try to silence those with different ideas. They are the opposite of what makes America – the greatest country in the world. A country where freedom of speech and political expression shall never be damped, silenced or stopped. It is why no matter what country one lives – they imagine their life would be better here. It is why thousands across the globe stand in line every year to migrate here.
We simply can not let the Norton’s and Eaton’s of this state dilute that perfect American image and that founders vision of everyone’s voice and ideas matter and should be respected and validated.
God Bless!
Idil – Somali Autism Mom & Minority Advocate.

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Comments Off on Parent’s gut VS Mainstream Doctors in Autism

As moms, we all have these gut feelings of when something is wrong with our children. We usually get this magical ability the minute our kids are born, not sure how it all develops – but we just call them “mom gut” feeling. 

It is usually our first instinct of acquiring more information and setting some kind of a road map to find out what is wrong and how to fix it. That is all we as moms really want – fix our children’s whatever pain and problem.
Unfortunately, too often mainstream doctors have dismissed our mom “gut” feeling and told us too many times – autism is a behavior and not medical condition. So we try to then turn to alternative methods of medicine because what mom can tolerate her child in pain. And, when your child is either pointing, touching or saying owwii – you have to do something. 
Up until recently, research has stated autism is only behavior and whatever symptoms our kids displayed or had were due to a behavior problem. And, mainstream doctors like Dr. Offit have been telling autism parents they are delusional and it is all mind over matter. And, we as parents should NOT believe in magic in recovering our kids from this devastating medical disorder. 
Dr. Offit whose books I find very arrogant and overrated plus full of so many conflicts of interest is why so many autism parents are having a difficult time believing even credible research information about autism and its cause. 
As a mom and I am sure all mothers – we all BELIEVE magic for our children. Isn’t that why we take them to fantasy-land in Disney World? Isn’t it magic when you put your child’s baby tooth under their pillow and the tooth fairy visits. Isn’t it magical when we tell our children Santa Clause left them all of those magical gifts they wanted. Don’t we tell our children to believe in a magical and perfect world where everyone likes them. 
I would say YES. I believe in magic because I want my child to have a magical childhood. I believe in alternative medicine because the mainstream medicine would not listen to my child’s pain. I believe in listening to the patient to find out what is wrong. What a simple “magical” idea. 
For us Muslims – it is the month of Ramadan and we believe that the last 10 days of the month are MAGICAL and God can bring magic powers. I pray for a magical world where my son and the millions like him are cured from the symptoms of autism. Isn’t it magical that after all of these years, what autism parents have been saying is now becoming true via recent research. Autism is a medical condition that affects a child medically not just behaviorally. Imagine that patients know what is wrong. 
I have hope despite the Dr. Offits of the world who try to crush autism parent’s dreams – Autism will be cured for my son and all children. I believe in trying everything and in everywhere to help my child including alternative and magical medicine. 
Happy Eid (Eid Mubarak to all Muslims around the world) May God bless all of our children with autism with good health.
Idil – Somali Autism Mom and Minority Advocate

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What is Autism Disparity?

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We often hear the word disparity associated with people of color in education, health, economic opportunities, etc. And, I have always wondered – why is disparity so high in every corner.

First, let’s describe what disparity is:
Disparity is in a nutshell “unequal”. This can be unequal access, unequal opportunities, unequal care, unequal information or unequal anything. So then autism disparity happens because of inequalities to services, resources, research, etc and etc. And, why does it happen for autism and who is responsible for this Disparity which means unequal?
Well – let’s dig deeper. Autism affects a child and that child’s family then tries to seek support and services from local, state and federal agencies as well as medical professionals and the education system. Then how that child/family is helped or supported is how equality is measured. Did they get equal access to services, resources, early intervention, referrals, educational support and medical support. It turns out that if a child is a minority or their family is – then the care and support is far less making it “unequal”. 
Then the question of why comes to mind and why would anyone would do such inhumane thing to an autism child or family?
So then another question comes to mind. If disparity comes from inequality and inequality comes from discrimination and discrimination comes from racism and racism comes from racist. Could those in charge of such services, resources, education and medical be racist?
Common sense would say – of course not. How could so many be like that and do they view themselves as such. Or could this just be unintentional racism whereby the person is not even aware of how they speak, support, give information and educate. Could disparity be so buried deep down in one’s thinking that it does not even surface, sort of like how you just know how to drive to your home without really thinking about which highway or street you took because you have done it so many countless times.
I come to believe this is the case at least in Minnesota, and what makes it worse is that most people get defensive to talk through the connection between disparity and racism in fear being labeled racist. However, not talking and debating through it will only keep the status quo. And, quite frankly – the status quo sucks for minority and low income autism families.
My advice would be to any county, local, school, clinic, state or federal entity to look at their stats and change their policy so that irrespective of a child’s color, race, ethnicity or location – they get the best appropriate autism services, resources, medical intervention and education. 
As adults, we owe our children at least that much because playing defensive and blaming the victim is not the right way. It is the wrong way. 
And my advice to our minority communities would be to figure out how politicians we elected can affect the overall disparity. For example, a politician hires a secretary or a commissioner in an agency who then hire middle management (by the way middle management folks have the ability to use discretionary funding discreetly – and they are often missing the boat of equal access) who are usually the ones shaping what happens or does not happen and sometimes without the knowledge of the higher up. For instance, a commissioner or a department head might say – well we don’t have any resources to do minority outreach, but middle management is funding their “friends or likes” discreetly. 
A good question comes to mind of how can we possibly do that given the two political parties one of which takes our votes for granted, speaks for us rather than engage with us. Remember how when you were young you were told to sit in the little table, but all of the good action was happening at the big table. That is what it feels like within this political party – at least in Minnesota. In other words, a tide can lift a boat if all are in the boat.
Then there is the other political party which does not even have a little table for us, and keeps telling everyone to pull them selves up by their bootstraps, with no regard of if folks are wearing boots with straps. In other words, equal opportunity only works when all are wearing similar boots and have been provided the same opportunities to buy boots with straps. 
Disparity can be eradicated and eliminated if people looked at their polices, connected to politicians and their staff and made it fair and equal. It can be done by changing current policies. If I can paraphrase James Carville’s famous quote “It is the economy stupid”. 
For African Americans “It is our votes stupid”. We are not using it wisely. Think about that!
Idil – Somali Autism Mom and Minority Advocate

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