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Parent’s gut VS Mainstream Doctors in Autism

idilabdull | August 6th, 2013

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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.

Thanks!

Idil – Somali Autism Mom and Minority Advocate

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What is Autism Disparity?

idilabdull | August 3rd, 2013

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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!

Thanks.

Idil – Somali Autism Mom and Minority Advocate

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

| July 20th, 2013

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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.

The President’s raw, heartfelt and emotional comments today:

Thanks!

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

How Media Shapes The Narrative of the Message Including Autism

idilabdull | July 19th, 2013

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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

idilabdull | July 19th, 2013

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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.

Thanks!

Idil – Somali Autism Mom & Minority Advocate.

Category: Uncategorized

Minnesota Nice! – What does it exactly mean?

idilabdull | July 19th, 2013

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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.

MNsure leadership – sooo nice and colorful and really diverse – just take a look:

MN Medicaid agency leadership lacks diverse faces and leaders – why?

Thanks!

Idil – Somali Autism Mom & Minority Advocate

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Jenny – is she from your block?

idilabdull | July 18th, 2013

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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.

Sides against Jenny and there are plenty, this is one of them:

Jenny’s new job prompts sparks and outrage in autism community – by NPR

Sides for Jenny and there is not much, but they are vocal:

An autism mom’s take on Jenny and the new View job

Thanks.

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Autism and Wandering – what is happening now

idilabdull | July 11th, 2013

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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.

Alison Singer’s Presentation about Wandering and IACC Activities

Information for missing children with Special Needs from Mr. Lowery

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.

Thanks

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

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

idilabdull | July 10th, 2013

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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. President 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

Thanks.

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

How Do We Get an Invitation – Commissioner Ehlinger

idilabdull | June 24th, 2013

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First, let me say for the record – I was pleasantly surprised when state health department commissioner invited me to lunch. After all, I am just a mom and a rookie autism advocate at best.

Then I thought – oh boy he is going to yell at me for my east coast flavor blogs which I say how Minn health department has failed miserably in minority health from autism to everything else. In fact, for over ten years, the state health department has done a horrible job in their EHDI (Eliminating Health Disparities initiative).

But in all honesty, it was a nice lunch and I like Commissioner Ehlinger a little now which makes even harder to blog about his policies. (note to self, don’t have lunch with Jesson)

All kidding aside, I would like to know as a Black autism mom – how exactly do we get an invitation from your child and maternal health department? They for some reason see communities of color as inferior, they always neglect or dismiss our ideas and needs. For over two years now, we can’t even get them to follow the simple CLAS standards in their main phone line or website. Very easy to do, but defensive and resistance has been their view from every corner. Now, MCH has always been like this even under Commissioner Magnan/Pawlenty administration. The difference was with them – we were able to get someone from the Governor’s office to put them into shape or Commissioner Magnan took charge. Dayton’s office always tells us (well let’s not even go there) and you simply keep referring us back to them. This is not working Dr. Ehlinger because children are being neglected and families are desperate to learn about autism services and resources.

So, I ask – how we get an invitation to be a partner rather than a 3/5th of a community?

Below pictures are only few decades ago and while the tactics were different and more direct racism. Today’s bias is you are not good enough, not qualified, Let’s fund us to tell you about you, we forgot to tell you about this resources, service or include you or my fav – we care about diversity. But our staff, our grantees and our process is not really diverse, but we really really care.

At some point, you as the head of the state health agency must say this is not working and we need not talking at communities of color, but talking with and partnering with them. We are simply tired of mainstream folks talking and doing for us, about us and without us.

One of my questions for you was – how come you did not hire an assistant commissioner that was African American given the horrible disparity in our community. And – you said “you asked 5, but none wanted the job”. Think about the fact that you only know small number of qualified African Americans. Think about the fact that there is never ever ever a person of color policy adviser for MDH at state Capitol where all state resources and decisions are made. Think about the fact that even in MDH refugee dept lacks faces from the communities it serves. It is like trying to catch your tail. Students are never hired, staff is never promoted, our community is never given the first chance – so how can they possibly make it to the commissioner level? They can’t – right. No one is born an expert, people are given opportunities and it just seems that at MDH equal opportunities in employment, in grants, in policy is scarce and unequal.

So, I ask again how do we get invited to have equal access and equal treatment under your administration? What do we need to do to overcome subtle bias and persistent prejudice that still linger and enhance health disparity and health discrimination at MDH?

Thanks much.

Idil – Somali Autism Mom – determined to fight for minority autism families and children from every river, valley and mountain.

Through drenching rain
and freezing cold, I will overcome.

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Blog Archives

Parent’s gut VS Mainstream Doctors in Autism

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

IACC Full Committee Meeting Agenda

How Do We Get an Invitation – Commissioner Ehlinger

Through drenching rain
and freezing cold, I will overcome.

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Blog Archives

IACC Full Committee Meeting Agenda

Through drenching rainand freezing cold, I will overcome.

Recent Posts

Archives

Categories

Meta

Through drenching rain
and freezing cold, I will overcome.