Monthly Archives: July 2013

Comments Off on I Could Not have been More Proud of My President – Today

The leader of the free world, The President of the most powerful country on earth and My President said today something that so many African Americans feel hourly and daily. 

There is this nagging and consistent bias in so many areas of a country that everyone wants to immigrate to. The President said what we as Blacks are all feeling after last weekend and even as far back as Rodney King Jr’s trial and beyond. The fact is there is racial and ethnic profiling in this country that is alive and well. There are so many times when as an autism advocate and I ask simple things like equal access to simple services and I am looked as if I said something out of this world. 
President Obama said today “that could have been me 35 years ago”. My take is that could be him today if he wore the same clothes and walked in any USA town. 
What does this have to do with autism – what a good question.
First, as Black autism mom and advocate – I have to say there are daily instances whereby people are so dismissive and defiant to even acknowledge there is bias in care, in services, in resources and in access. There are so many times when so many MN elected officials introduce unequal autism legislations and yet fail to see the inequality. This just happened this year when Sen. Eaton and Rep Norton wanted a very nice and generous coverage for the middle/upper class most likely white autism family and by the same token wanted a very limited and unequal coverage for the low income autism family who is most likely a minority. Yet, these elected officials failed to see the differences and in fact were both very defensive about it. 
Now – the good news is we fought and prevailed such racist policy, but it just goes to show you that disparity in autism, in education, in the justice system, in economics and in between is real and happens everyday. 
What I took from the President’s remarkable and heartfelt comments today were the following;
1. We need Congressional Black Caucus (CBC) to start writing legislation about changing the unfair and unequal fair sentencing methods which is why so many Black boys/men’s lives are destroyed. 
2. CBC also should look into stand your ground and see how and who does it work for and is it fair. And, if it is not – start a campaign of changing it state by state.
3. Start a health disparity reduction legislation whereby state health departments are obligated to reduce it and share resources with Black community health centers. And, they have to provide data to show the reduction. 
4. Start and write a better education reform legislation or policy that will give more power to parents and reduce this horrible education gap.
5. Finally – start some kind of media campaign whereby Black boys and men are not profiled because of what they wear, say, etc. 
If any or even one of the above items happens during President Obama’s term then it is a huge step forward.
The reason I decided to write about this is so many autism parents also have other children who look like just Trayvon and they are feeling the same pain his parents are. In addition, if we don’t address this racism policies then there is another Trayvon waiting to happen. 
Idil – Somali Autism Mom & Minority Advocate

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Comments Off on How Media Shapes The Narrative of the Message Including Autism

To shape the narrative of any message is important to shaping any policy including autism. What the heck does that mean and why should we care? Autism services, resources and research come from autism policy which come from agency leaders and policy makers who are influenced by what they see, hear and listen via the media. Therefore, because those telling autism stories will say it, write and print it from their views and unless that is diverse then it is not the whole story. Get it, in order to tell the whole autism story – one must understand it or reflect from all lenses and corners.

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Hogging The Resources Yet No Progress

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Remember – when big wall street banks were too big to fail even though they mis-managed their resources. And, the little guy had to pull them up. 

Well, the same can be said for many so called big autism advocacy agencies. They are too big and therefore should hog the resources regardless of their outcome. They can have mediocre record of results in reaching-out to autism families. They can do meaningless webinars for families that don’t even own computers or have access to the internet. Yet, they have to hog the resources because they are too big to not hog it. 
The little agency that could never does because it gets swallowed by these too big to fail autism agencies. I am always told by state and federal agencies who keep funding them – they are big and have the infrastructure to get funding. And, that is why we fund them. Now what now?
So, if these big agencies don’t have to produce results or numbers, yet keep getting the same funding – why should they change their policies? Isn’t that a good question. I wonder if WCCO channel 4’s good question reporter will explore more here. 
Another area is the child and maternal health block grants that go out to state health departments with no questions, measurable results, change, reservation or even a thought. In other words, no matter what any state’s child and maternal health department does or does not do – they get millions of dollars from the federal agency of HRSA. So, why can’t HRSA or other US HHS departments set funding guidelines in a way that holds them accountable to their diversity, outreach or disparity reduction record? Well, no one seems to know but of course everyone cares, just not enough to make a change in funding policy.
Another one is these grants/funding that are for family to family which basically means such agency that has this funding stream must educate families across states about autism and other disabilities. For example, Pacer (one of those too big to not get it) has this and they do hundreds of “webinars” that usually never reach low income or minority families because they don’t have access to computers, understand what the heck a webinar is or don’t have internet. I went to one of their workshops and they were teaching mostly non-minority parents how to advocate for their child, how to tell their child’s story, how to befriend their child’s teacher and even how to talk to an elected official. Can you believe that – here in minority-ville – all we know is how to hide our child and never tell their story.  And, when I asked one of their reps if they had any plans of doing similar workshops in south or north Minneapolis or even rural Minnesota specific for minority autism families, I was told and I quote “we just don’t have time for that kind of thing – quite frankly”. 
Now what now? She seemed to be confused by my question and had no plan of changing their way of never reaching out to our communities. 
Here is my advice for any federal health agency that funds these too big to fail:
1. Every grantee must have a real measurable plan with an end goal of reaching-out to minority and rural communities.
2. They must partner & share the resources with minority and rural based organizations.
3. They must have language lines for those that don’t speak English and follow the civil rights title 6 guidelines.
4. There must be a way to measure success and have a short and a long term plan of reducing disparity with real numbers and facts – not we care or we are nice words crap.
5. And, finally – there must be diverse staff in these agencies with a saying power that reflect the communities they get funded to serve. 
6. Plus the acknowledgement that disparity comes from racist policies whether they are intentional or unintentional, one never really knows. Pretending racism and bias policies don’t exist is not the answer. We need to talk through it and address it with action, not pandering meaningless words.
If above policy changes are started and implemented – then good change can only come from them. I really hope that US HHS guidelines change because clearly states have no desire to change their business as usual policies that have created this disparity in the first place. Hogging federal and state resources with no improvement or progress is stupid and silly.
Idil – Somali Autism Mom & Minority Advocate.

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Comments Off on Minnesota Nice! – What does it exactly mean?

Alright, we have all heard of Minnesota nice. We have all seen Betty White’s character on the Golden Girls show (loved this show) and how really really really and really nice Minnesota really is.

Well – let’s dig deeper at least from minority mom autism perspective. 
Minnesota has worst #48 achievement gap between Whites and Black students in the country. This makes me think what the heck did they do when they were worst #20, 30 or even 10. Why wait so long – are they going for a record of #50 worst out of 50 states. I mean that is not a record to be proud of. Yet, everyone is really nice here and couldn’t possibly let such disgrace record go on.
Minnesota has bottom 10 worst health disparity for Blacks and Latinos. So, if everyone in Minnesota department of health is soooooo nice – why such a high gap? Women and children of color fair the worst here – yet child and maternal health keeps hiring clueless village idiots. One can only ask who are they related to up there. Over 115 staff in this department, less 10 are minorities. But again they are all soooo very nice and if you ask them if they have a plan. Their favorite line is “we know we are not doing a good job reaching-out to minority communities”. Then when you ask – OK so what is your plan to reach-out. They have none and god forbid you ask again – well then it turns to angry black person profiling scenario.  
Imagine for a second – if the commissioner fired the leaders and managers of MDH’s child and maternal health department and filled it with more caring, diverse and can do people. Well – I guess we can all dream. 
Minneapolis has worst Black unemployment in the whole country – I mean think about that. Yet, everyone is sooooo nice. I mean really even the mayor here is very nice and even talks to us. Well – actually only when he is running for an election. 
Then there is the new MNsure agency – exchange, whatever the heck they are calling it which we are told is to help the low income people who are disproportionately minorities get access to better health care. Guess what the leaders of this agency lack? Wait for it……minority people. But don’t forget they are all nice, they just don’t need to reflect the actual communities they are going to serve which will need explanation of ACA and how it will work. 
My only advice here would be – if all of these “nice” people knew we understood the importance of our votes and how it can change and shape policies, we would not be at the bottom of every pit. We vote for the Governor who hires agency commissioners who bring in their entourage who bring in mostly clueless village idiots like the ones at CMH at MDH. 
Why can’t minorities especially Blacks use their votes as an investment stock that should have a high return. In other words, if you invest a stock in a company and that company goes bankrupt or is mis-managed – would you keep buying the same stock knowing your investment will have no sufficient return? I would bet no.
Well – the same can be said for these out of touch politicians in Minnesota who keep taking our votes for granted by never ever having faces that reflect us in their leadership, cabinets or policies. 
I hope we start asking with Sen. Eaton of Brooklyn Center, Rep. Norton of Rochester, Sen Hayden & Sen Kari D of the heart of Somali Cedar area, Sen Franken and Gov Dayton. 
Otherwise, our kids will keep failing in school, health disparity will still be high, so on and so forth. 
Now, this does not mean that we should just switch sides without bargaining because sometimes the other side is not much better. In fact, I find it amusing when I hear “pull yourself up by your boot straps”. ah – what if you don’t own boots or they don’t have straps. Or I will lower your taxes. ah that is like asking a naked person if they would like a washer & dryer or a hungry person what kind of spresso coffee machine they would like as a gift. Huge disconnection here – really.
We should learn from other communities who vote based on what have you done for me and what will you do about my issue and hold them all to it.
To sum it up – Minn dept of health, Minn dept of human services and MNsure now all have non minority commissioners and zero asst commissioners of color even though they all serve low income people who are disproportionately minorities. And, Minn department of education has a commissioner from minority community, but zero asst commissioner from the Black community, even though Black kids are fairing worst here. That is Minnesota NICE for ya! and you betcha nice. Who can ask for more here – really. As long as they are “nice” why bother with little things like policies and diverse leadership. 
Idil – Somali Autism Mom & Minority Advocate

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Jenny – is she from your block?

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OK, so by now everyone heard that Jenny Mccarthy got hired by the View on ABC. And, boy did that spark a blogosphere outrage – even main stream media and journalist had to weigh in.

I would say most bloggers were against it, sent comments to ABC to not hire Jenny, wrote opinions on major news outlets and claimed Ms. Mccarthy is a threat to children’s public health.
Now, to give background – Jenny has a son with autism and she believes that her son’s autism was caused by vaccines because after he got the shots is when he developed his symptoms. And, she has been able to “recover” him from autism through what is called bio-medical interventions or alternative autism treatments. We have seen videos of her son after and he looks better but we have not seen videos of before the “recovery” to make a comparison. 
When I first heard about Jenny – I remember her saying autism is a “medical” condition and not just a behavior. I also remember her saying many children with autism have “gut” issues or GI symptoms. I also remember – most main stream medicine disregarding that. I remember her vividly stating that when your stomach hurts – that is very much connected to your brain. At one point – maybe on Oprah show – Jenny explained how when a person drinks alcohol it affects their brain and they get drunk. Again, so many people called her names and dismissed her theory. 
In fact, when Oprah started her OWN network and wanted to have Jenny on it – she got similar backlash and people protested it. For some reason – Oprah and Jenny’s deal fell apart.
And, now walla Ms. Mccarthy is hired by ABC and boy are most people pissed off. 
So, where do I stand and why should I care?
First, Ms. Mccarthy’s theory of gut being connected to the brain turns out to be true. See below IACC meeting about GI and Autism connection. In fact, my own son would always touch his tummy and say oowwiii and when I ask his regular doctor – I was told autism is a behavior and not connected to his tummy. I say a point for Jenny here because apparently autism is connected to the GI.
2ndly, most of the people against her are either self autistics who I have nothing against but they can clearly speak & advocate for themselves or doctors who are funded by the makers of vaccines which is a huge conflict of interest. This is not fair since most of the children Jenny speaks for have more classic/nonverbal autism and cannot speak or advocate for themselves. I would say another point for her because she is standing up for the voiceless.
3rd, There are lots of parents that have documented their child talking and after a particular vaccine or another – silent ever since. How can you argue with that – fact is a fact. Another point for her.
4th, There have been multiple studies whether vaccines cause autism in many different countries and they have all been proven to be wrong. A point against Jenny or a point for CDC.
5th, How can Dr. Paul Offit be praised and Jenny dismissed. He is always writing books where he only insults parent’s believes and has no solutions. And, he gets funds from vaccine makers. A huge point for Ms. Mccarthy. 
Personally for me and when I looked at my son’s record – it was not that he got the MMR talking then stopped. But I can name hundreds of Somali parents who say the opposite and I have zero right or audacity to say to any parent, they are wrong and I am right. I can only speak about my son’s autism. 
Now, there has been many Somali parents whose first child got autism and did not vaccinate their 2nd or 3rd children and they still got autism. Therefore, I can understand the governments panic that vaccines prevent diseases and we should vaccinate all children which I totally agree with. 
What I don’t understand is why CDC or others fail to see the heartache, pain and sadness an autism diagnoses can bring – not to mention the stress. What I also don’t understand is why there is so much reluctance to find a cause and a cure for the symptoms of autism. I really think if we knew what causes autism symptoms and had a way to help these children reach their full potential – there would not be so much distrust of CDC and the Dr. Offit’s of the world. 
In Sum – I am glad that Ms. Mccarthy is hired by ABC and I am glad they said no topic is off limit to talk about there because we need an honest conversation about autism and what it is doing to so many American families. We need an end to this epidemic and a solution for millions of children and families. So – you go girl and I hope you bring up autism in every show and give a voice to our voiceless children and our tired and overwhelmed parents. 
My advice to those against Jenny would be fight autism’s symptoms not autism parents. 
Idil – Somali Autism Mom & Minority Advocate

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Comments Off on Autism and Wandering – what is happening now

First, I have to give credit and much appreciation to Wendy Fournier – The President of National Autism Association who has been a relentless laser about autism and wandering. NAA has managed to put this in front of IACC committee’s face since 2010. And, I think the issue has come a long way to raising awareness to a recent study which I will link below to asking U.S Dept of Justice to help and intervene. 

A recent study stated half of children with autism will wander off with no regard to safety. The previous IACC committee sent a letter about this to HHS Secretary Sebelius and the Secretary responded. In addition, this IACC committee invited Mr. Lowery from National Center for Missing and Exploited Children to explain how they train law enforcement and first responders when a child with autism is missing – very insightful report. I do however think there could be more training for more states and more law enforcement. 
We also heard from Mr. Slowikowski from the U.S Dept of Justice because many of the IACC members were asking about establishing an Amber alert system for autism & wandering. 
Mr. Slowikowski stated the Amber alert started with a legislation from Congress and Dept of Justice can not do something similar for autism. We would have to go to Congress and ask for an Autism Wander Alert legislation – though he said he does not advice anyone about any legislation being a Federal employee and all. He basically told us DOJ or its staff can not initiate. 
In addition, Dr. Perrin (the guest with the most hats today) stated that while he can’t promise autism and wandering will be part of the agenda for the next AAP meeting, he will tweet about it and see if he can ask state chapters to send out more awareness information on it and maybe they won’t charge the tool kit so that peds can get it for free and in return use to educate their families. 
We also found out that while CDC and CMS created an ICD 9 code for autism and wandering – it has not been used a lot. I think we again need to educate the public, parents, advocates and doctors to use this code for any child that wanders off. This will assure coverage for both public and private insurance companies. 
I also think because every state has some kind of Home and Community waiver for people with disabilities – parents should contact that department in their state and ask coverage and resources available for their child. For example, it can cover home safety improvements including locks with codes, window safety and GPS bracelets. 
Ironically and sadly – the night before IACC meeting in Washington DC – a young boy with autism wandered off and was found in a car dead. If this kid had a GPS tracking system – he would have been found faster, if his house was safe for him – he would not have gotten out. 
We need to make sure our children with autism are safe in their environment.
Here is my take;
1. We need more family and parent education about Wandering, what services and resources are available for each state. 
2. Parent advocate agencies can integrate this in their autism workshops.
3. AAP and its state chapters need to add wandering into their national and state meetings.
4. The new ICD 9 code for wandering must be used as necessary.
5. Any parent whose child wanders should look into their states home and community waivers for people with disabilities to see what they will cover.
6. Schools and other therapy areas must incorporate “wanders” into the child’s IEP, ITP, etc.
7. Finally – we need to ask some of the elected officials on the National Autism Caucus in Congress if they would write a legislation for autism wander alert similar to the amber alert system.
Idil – Somali Autism Mom & Minority Advocate 

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Comments Off on July 9, 2013 IACC Full Committee Meeting @ NIH, Bethesda MD

Today’s IACC meeting was agenda packed and very good – I would even say great talk and discussion. I know even after we literally sit there and take in information and debate for over 8 hours – it just doesn’t seem enough time. Because of the topics and the number of presenters – there was no time for even 5 minute breaks today. 

Below is the final agenda and discussions which can also be viewed online at IACC website @ NIH.

IACC Full Committee Meeting Agenda

Tuesday, July 9, 2013
9:00 a.m. to 5:30 p.m. Eastern

National Institutes of Health
31 Center Drive/Building 31
C Wing, 6th Floor, Room 10
Bethesda, Maryland 20892 

Map and Directions

The registration desk opens at 8:00 a.m. Eastern for members of the public attending in person, and the meeting will also be available to the public by live videocast and conference call. The materials for the meeting can be found here.

Time Event
  9:00 a.m. Welcome, Roll Call and Approval of Minutes

Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC

  9:05 Racial and Ethnic Differences in Subspecialty Service Use by Children With Autism

James Perrin, M.D.
Professor of Pediatrics, Harvard Medical School 
Director, Center for Child and Adolescent Health Policy
Massachusetts General Hospital

  9:20 Commentary on Parent-Physician Efforts to Address Wandering

James Perrin, M.D.
Professor of Pediatrics, Harvard Medical School 
Director, Center for Child and Adolescent Health Policy
Massachusetts General Hospital

  9:30 Panel on Comorbid Conditions in People with Autism

  9:30-9:45       Comorbidities Among Patients Served by the AutismTreatment Network

James Perrin, M.D.
Professor of Pediatrics, Harvard Medical School
Director, Center for Child and Adolescent Health Policy
Massachusetts General Hospital

 9:45-10:00      Gastrointestinal Disorders in Patients with Autism

Timothy Buie, M.D.
Associate, Department of Pediatrics
Massachusetts General Hospital for Children

10:00-10:15     Catatonia in Autism Spectrum Disorders

Lee Wachtel, M.D.
Medical Director, Neurobehavioral Unit
Kennedy Krieger Institute

10:15-10:30     Immune and Metabolic Conditions in Patients with Autism Population

Richard Frye, M.D., Ph.D.
Director of Autism Research
Arkansas Children’s Hospital Research Institute 
Associate Professor of Pediatrics
University of Arkansas for Medical Sciences
College of Medicine

10:30-11:00     Committee and Panel Discussion

 11:00 Meeting Report: Environmental Epigenetics Symposium
Held: March 22-23, 2013, UC Davis MIND Institute, Sacramento, California
Sponsors: Autism Speaks, Escher Fund for Autism and UC Davis MIND Institute

Jill Escher
Escher Fund for Autism

Alycia Halladay, Ph.D.
Senior Director, Environmental and Clinical Sciences
Autism Speaks

 11:30 Rethinking Nonverbal Autism

Portia Iversen
Parent and Advocate
Founder, Cure Autism Now Foundation

 12:15 p.m. Lunch
  1:15 Oral Public Comments Session
  1:50 IACC Discussion of Public Comments
  2:15 Break
  2:30 Panel on Wandering

2:30-2:40         Wandering and Autism: What We Know, What We Need

Wendy Fournier
President and Founding Board Member
National Autism Association

2:40-2:50         IACC Activities to Address Wandering

Alison Tepper Singer, M.B.A.
Autism Science Foundation
Member, IACC

2:50-3:10         The Amber Alert Program

Robert Lowery
Executive Director, Missing Children Division
National Center for Missing and Exploited Children

Jeff Slowikowski
Associate Administrator, Office of Juvenile Justice and Delinquency Prevention
U.S. Department of Justice

3:10-3:30         Committee and Panel Discussion

  3:30 Tips for Early Care and Education Providers 

Shantel Meek, M.S.
Policy Advisor, Early Childhood Development
Administration for Children and Families

  3:40 Science Update

Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

  4:00 IACC Business

Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC

4:00-4:15         DSM-5 Planning Group Update

Geraldine Dawson Ph.D.
Professor of Psychiatry and Behavioral Sciences, Duke University
Chair, IACC DSM-5 Planning Group

4:15-5:00         OARC and IACC Business Update and Discussion

Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC

5:00-5:30         Round Robin and Open Committee Discussion

  5:30 Adjournment

Idil – Somali Autism Mom & Minority Advocate

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