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Alright – so, Two time Oscar winner Robert De Niro who has an 18 year old son with autism pulled a movie directed by Dr. Andrew Wakefield from his prestigious film festival after he received the usual criticism from big government agencies, big pharma companies and all of their media friends. Vaxxed – from cover up to catastrophe is a documentary film that sort of linked vaccines to autism. It talks about Dr. William Thompson, the so called CDC whistleblower who never really came out to blow anything, prove or disprove anything.

I personally like Dr. Wakefield. I think he is charming, cute (oh please – take your mind out of the gutter), and really cares about kids with autism and their families. I also like and respect many of the CDC researchers that Dr. Thompson is talking about. I honestly don’t believe Dr. Thompson especially when he says CDC hid data that stated African American boys were more likely to get autism when vaccinated. There is no way in hell that Dr. Allsopp nor Dr. Boyle and I know both of them personally and respect more than words can express would ever allow such deceit. In fact, the study done here in Minnesota – the rate of autism in African American (non Somali) children was much lower than Caucasian and Somali kids. Plus, if this guy has any guts then he needs to come out and explain what the heck he means instead of hiding behind CDC walls and the statement posted in his lawyer’s site.

Nevertheless, something is causing autism rate to keep going higher every year and we can’t just say “well we know it is not the vaccines, we don’t know what else it is and we are not going to look at anything else”. For example, Somali American families are extremely hesitant to vaccinate their children fear of autism. I recently asked a new father why he didn’t vaccinate his new son and he said “unless someone can tell me what causes this life long disability that so many families in our community are struggling with, I am not going to take any chances”. I then asked what do you think will ease your mind and he replied “the state health department needs to do research that looks into why our kids are getting autism higher, why it is silencing our kids and why autism is so severe in our community”. I could not have said it better.

You see the problem is not that our community does not trust CDC or facts, it is that we don’t trust the Dayton Administration’s health department. Minnesota Department of Health (MDH) has not allocated one iota or one dollar looking into causes of autism. All they do is preach the same message which no one seems to be buying. If you remember when Dayton was campaigning in our community, he kept saying his administration would look into autism. Well – add that to many of his campaign lies. MDH has zero desire to help our kids or our community. Autism is not a joke, it is tiring, exhausting, emotionally and physically draining and my advice to anyone having children would be to tell MDH to take a flying leap.

In other words, listening is a two way street. Why should we listen to them when they clearly don’t listen or care about our children’s health. Governor Dayton, shame on you for using lying words to get votes and Commissioner Ehlinger – shame on you for being a children’s doctor that does not care about children’s health.

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

Idil – Somali Autism Mom & Minority Advocate.

Alright – so, If you read the Minneapolis Star Tribune lately then you saw the articles written about people with disability in Minnesota and how many of them are in segregated workplaces, living situations, so on and so forth. I heard from the reporter writing this that Vermont has one of the best inclusion programs in the country for individuals with disabilities which includes autism.

Most of the programs that have been written in the paper are under DHS or our state Medicaid agency which we all know moves slower than tortoise. But there is sadly another trend of secluding children with disability particularly autism in the education system. There is a school district in Minnesota that has put all of the children with autism from kinder-garden to eight grade in one corner of a building and it is just them, no nuero-typical kids go there or even know what is down there. Not kidding.

Least restrictive environment under IDEA clearly states just that – children’s needs should be individualized based on their educational need in the least restrictive placement. Yet, this school district decided to use public funds and seclude kids with autism from the rest of the general education children. Their reason – well kids with autism have meltdowns and we did not want neuro-typical kids to see that. I kid you not. Another bogus reason, well – this way all of our speech, OT, etc. therapist don’t have to travel from school to school. Seriously, I kid you not.

Let’s explain this in layman’s terms. This district would rather not inconvenience their paid therapy staff, so they put all of these kids from five years old to 15 years old in one secluded, doors locked location. The bigger question is why the heck would the state education department approve such clearly inhumane placement. These children or their families don’t have access to the general education area. In fact, recently the school principle was giving a tour to the upcoming parents and their neuro-typical kids and did not mention the contained autistic kids placed downstairs in this building. To make matters worse, one of the students asked “what is down there?”. The principal panicked and stated – nothing “we don’t go down there”. How is that for LRE. If parents of this publicly funded district want to visit or observe their kids – they are told no or given silly excuses such as “well – you could see a kid having a meltdown. Right because you know autism parents have never seen that. Or my favorite – you being there will make our adult paid by public funds (just do your darn job) nervous. I kid you not.

Remember the Jensen and Olmstead case that has sparked so much outrage because vulnerable individuals with disability were being locked up and abused in publicly funded placement. Well – now imagine these kids who can be abused just as easily while the parents are not allowed to visit and the administration of this district would rather help and support their staff than the very children they get paid to teach and support. Not surprisingly, this secluded program’s ASD kids are mostly minority while zero, zilch, zippidy are staff of color. Not kidding. If these kids were mostly Anglo – I am certain such program would never exist nor would MDE approve it. Yet here they have without blinking because minority ASD kids are not even as good as animals.

Think about this for a moment, when these kids leave school into the real world, how do you think they are going to act? Wild and with more behaviors because they have not been exposed to the real world in their education setting. Equally important the neuro-typical kids are also denied access to these ASD kids which means when they see a kid with autism-like behaviors in target or some other public place, they will give the judgement eye, look and disbelief. Oh and when the district was asked why not expose the general education kids to the autism program – their response…….wait for it……it is really original…..middle school kids are self-observed and would not care or have compassion for ASD kids. I kid you not. This is 2015 in progressive Minnesota nice school district – how do you like them apples?

Study published about middle school kids and autism stated that less than 47% of kids ever heard of ASD. My guess is because of districts like this one that seclude and hide kids with ASD from their typical peers. That is so sad and heartbreaking to me as an autism mom and as a human being.

Cambell, J.M., & Barger, B.D. (2011). Middle School Students’ Knowledge of Autism. Journal of Autism and Developmental Disorders, 41(6), 732-740

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

Idil – Somali Autism Mom & Minority Advocate.

Federal Interagency Autism Coordinating met for the second time under the new Autism Cares Act couple of weeks ago on Jan 12, 2016. Their first meeting was more about introductions and going over their charge which is to update the Federal autism strategic plan, to get input from the public and go over autism research for the past couple of years since the last update.

Director of NIH, Dr. Francis came to the first meeting and said a lot of nice thoughtful things. Of course, I like Dr. Francis, so maybe I am a little bias. My favorite part was from a public member John R who summarized public comments. John is one of those people that can find positive in any situation while acknowledging all concerns. John said what most autism parents are feeling in the country and how most think that the Federal government is moving too slow in showing any significant progress.

He also talked about how slow research moves and how far we have come including the good things IACC has done so far, especially under previous chair and my all time favorite autism expert – Dr. Insel.

As usual, there was some that were upset that Dr. Francis only stayed few minutes. I think this assessment is unfair. Dr. Francis is the director of NIH not just autism. The fact that he gave our issue time out of his full day speaks volume to NIH’s commitment to autism. In addition, what the heck should he stay for. He is updated and knows what is going on. Then there was those that were mad because HHS Secretary Burwell did not come. I remember when previous Sec Sebelius came to IACC, the same folks got mad. Therefore, it is really hard to please everyone in the autism community. What I was mostly disappointed in the first and 2nd meeting was the lack of anyone mentioning autism and racial disparity.

I hope the new committee members keep the momentum we built and focus on recommending research that tells us how to decrease racial disparity, not the usual research that says “yes there is autism racial disparity in diagnosis, access to services and resources”. We already know that.

The new committee is not as diverse as I would’ve liked. I think the previous one under Sec Sebelius was much more diverse. But it is too early to judge them. We will have wait and see their recommendations and outcome.

While it is expensive and impossible for many autism parents to go to DC and take part in these meetings, I highly recommend sending your comments, questions and suggestions. They do listen and validate them and I speak from experience having had my comments validated back in 2010 and 2011 regarding the Somali autism prevalence research and CMS’ autism therapy coverage in 2014. Everyone’s voice matters to IACC and they represent or at least try to speak for everyone and in every issue relating to autism in the country. Below was their agenda for the last meeting.

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

Idil – Somali Autism Mom & Minority Advocate

Meeting of the Interagency Autism Coordinating Committee

Tuesday, January 12, 2016
9:00 am to 5:00 pm ET

National Institutes of Health
31 Center Drive
Building 31, C Wing, 6th Floor, Conference Room 6
Bethesda, MD 20892

Schedule is subject to change. Meeting may end prior to or later than 5:00 PM depending on the needs of the committee. For more information on upcoming events, please see http://iacc.hhs.gov/events/

Next IACC Full Committee Meeting:

• Tuesday, April 19, 2016 – Building 31, NIH Campus, Bethesda, MD

Alright-so, Minnesota department of human services, (DHS) also known as the state Medicaid agency is the state’s largest agency in Minnesota. Lucinda Jesson has been in charge of this agency for the past five years ever since she was hired by Governor Dayton back in 2010. DHS overseas the state’s elderly, the poor and individuals with disabilities including autism. Jesson is moving on up to be a judge and has been appointed by Governor Dayton. The governor has increased diversity on the bench. Jesson replaces Hudson whom Dayton appointed to the state’s Supreme Court, his second Black appointee. Well – how nice, maybe Dayton is coming around in diversity. Minnesota judges don’t represent the state’s diverse population which is sad and is a main source for the unequal justice system.

I have been barking on Jesson’s ears since her first week on the job. In fact, when I heard she was going to the state senate back in 2010 – I went there to make sure she was asked about autism. I wanted autism to be on her radar constantly. Sen Berglin whom I miss very much asked her about autism and Jesson replied “this is my 4th day on the job, but I will look into it”. Jesson has not only looked into autism, but she has changed the landscape of it. Commissioner Jesson has been a champion for children with autism and their families. It is because of her heavy hand, that Governor Dayton and the state legislature approved millions for the new autism benefit we now have in Minnesota. In addition, Jesson added the autism website that is coming soon, created an autism team and added the diversity training for autism providers that is now required for all autism clinics in Minnesota.

In my humble little opinion, Commissioner Jesson has been one of my favorite state agency leaders. She has this amazing ability of separating the issue from the person. For example, no matter how I advocated which is usually in your face – East Coast, I ain’t trying to be your BFF personality, Jesson never took it personally. She always looked at the core of the issue being raised and not who said it or how it was said. In fact, many people are always mad at DHS for something or another, yet Jesson was always cool, calm and collected. She even has a sense of humor. Couple of sessions ago or so, Jesson was testifying in HHS conference committee’s last week. This is when all the i’s and t’s are being done to every policy and law that comes out of the state legislature which makes most people nervous and on edge.

At any rate, Jesson was called by Rep Liebling and as she is walking to sit down, the committees’ staff also walked in and folks in the room started cheering and clapping. You see, the staff are often overwhelmed and overworked during the end of the session and have to be in multiple committees that sometimes happen at the same-time. Jesson put her sense of humor hat on and said “Madam Chair – I realize that cheer is not for me, but for the committee staff”. I don’t know how she did it, but she seemed to know everything that went on at this huge agency that had billions to manage and thousands of people to serve. I don’t even know how she found time for my kazillian autism questions.

Commissioner Jesson, I wish you well and I am sure thousands of Minnesota’s autism children and families will greatly benefit from your autism policies and the roots you planted in DHS. We appreciate all of your work and wish you all the best in your next chapter in life. I am sure you will make a great judge. You certainly have the qualifications and the qualities.

Congratulations and good luck!

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, remember it was not that long ago even in this country when children and adults with disabilities were separated from society and secluded in institutions and hospitals. Now many states including Minnesota especially after the Jensen Settlement have moved towards inclusion and integration which I think are good.

So, then why are some school districts in Minnesota secluding majority of autistic kids by putting them in the basement corner of a building. Some school districts decided without input from parents or the public to put students from kinder-garden to eight grade in corners of a buildings. Children with disability should be schooled near their typical peers, and not secluded or segregated in any area.

The IDEA policy clearly state children must have access to education in the least restrictive environment. In other words, kids with disabilities including ASD must have access to mainstream classes and neuro-typical kids. In this setting or as I like to call it “hell hole” does not provide LRE, generalization or appropriate education. Instead it provides seclusion, segregation and separation.

In the long run, this type of setting will set us back to the old days of institutions and hospitalizations. We should instead move our kids with ASD into more inclusion and integration. Plus, if we hide the neuro-typical kids from our ASD kids – how can they possibly grow to have compassion and understanding later on for our ASD kids. Neuro-typical kids should be exposed to kids with disabilities in schools so that later on in life our kids are not bullied or intimidated.

The bigger question is why is MDE (Minnesota Department of Education) allowing this clear exclusion and segregation. Side note, MDE’s compliance division has zero person of color. How is that for irony – the division in charge of compliance and quality does not have one single person of color. Yet, they are suppose to be fair and objective which is pretty hard when you have nothing in common with the students and families who depend on your decisions.

I hope the state legislatures and/or federal guidelines prevent any school district that want to take us back to the old days when we would hide and shame people with disabilities by putting them in corners and out of sight.

As a mom to an autistic child, this kind of behavior from any educational district really breaks my heart.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, how this new autism benefit in Minnesota and at the Federal level came about is really no secret because we kept blogging and asking media coverage throughout the years.

Sadly though not surprisingly, some attention hungry MN ABA providers or as I like to call them “blood sucking, greedy and racist” not all of them are crying a river because ooohhh, they did not get credit.

First, let’s get one thing clear – I have never ever ever ever seen any of these blood suckers fight, advocate, testify or ask anyone why Managed care low income autism families were being denied ABA, Really never. The only time they got involved with this benefit is when their private market coverage failed and ours passed in 2013 and during HSAC process. and that was only because they wanted to tell DHS how good of a job they are doing with their families in quality of care, supervision of staff, family driven services, child centered therapy blah blah. Oh, how can I put this diplomatically, for them to say that is like George Wallace saying I care about civil rights or being inclusive. Don’t get me wrong, at least Wallace said it loud and proud “segregation now and segregation tomorrow”. They do it here with a flavor of Minnesota nice delivered with a hint of sugar. They mostly do it subliminally in their intake process, their discharge process, their supervision process and their overall way in how they teach and deal with low income and minority autism kids/families.

Now, all of the sudden they want to take credit for low income managed care kids being able to get ABA. Are you bleeping kidding me.

This would be all too funny, if it wasn’t sadly true. In fact, even now they still never talk about or mention how many managed care kids they serve or care to serve. To them it is about the bottom dollar (not all of them). I remember back in 2013 session in one of the House committee where I must have done good in testifying against their 25 million dollar private market autism bill while they wanted to reduce the 12 million dollar bill for the low income autism kids where they recommended MA kids have an age cap of seven, while wealthier private income kids had no age cap, one of them came up to me after words and said “what difference did it make if ABA was called ABA or skills training”. I told him – it made a difference because the system can not discriminate against low income kids who are disproportionately minorities and are getting screwed by the current policy.

Now, they want to claim credit – again are you bleeping kidding. My response is “boohoo and cry me a river”. Better yet, buy Justin Timberlake’s cry me a river CD and maybe some blues jazz and really cry.

According to public data – none of these blood suckers have managed care (Ucare, Medica, etc) kids and do any intensive ABA therapy because they still don’t give a flying hoot about how our kids services are funded. Also, according to public data the following is what they were reimbursed for by the state Medicaid agency and their racial data for the children they serve. My take is most are just greedy bastards, some are simply racist. Luckily, there are few good ones.

This is 2013 and 2014 data (note 2014 reimbursement not complete yet)

Behavioral Dimensions – $6,879,362 – total kids 249, minority 33

Helena – $1,662.507, total kids 151, Minority 67 (Thanks Helena!)

PIE $1,373,11 – total kids 45, minority 10

Autism Matters $224,569, total kids 15, minority 2 (come on Tara!)

Minnesota Autism Center $34,728,536, total kids 405, minority 96 – (the most minority kids, but sadly most are forced to do 40 hours or hit the road. MAC also discharges children whose parents ask for quality of care or less hours who are mostly minorities, my son being one of those dozens of kids. MAC’s philosophy is 40 hours of center based or hit the road which is a contradiction to CTSS statute of child centered, family driven and culturally responsive. In fact, even if the child has objective 2nd medical recommendation of less than 40 hours, MAC still refuses to listen and discharges the child and family from treatment – usually abruptly)

Behavior Therapy Solutions of MN $2,378,348, total kids 148, minority kids 41 (not bad!)

Holland Center $1,968,126, total kids 43, minority kids 16 for both years, (not bad)

Home and Community Options $321,350, total kids 29, minority kids 2 (not good)

Lazarus $1,532,557, total kids 28, minority kids 11 total for 13 and 14 years (not bad)

RCA in Rochester $4,740,430, total kids 77, minority kids 18 for both years (not bad)

MEAP $1,342,325, total kids 30, minority kids 3 Asians and ZERO Black (I would say they have a problem with diversity and borderline racism – my opinion)

Lovaas $4,607,339, total kids 44, minority kids 8 total for both years (it seems to me there is a problem with diversity staff and kids here – my humble little opinion)

St. Davids $2,068,152, total kids 236, minority kids 85 for both years (they seem to care about diversity the most and even opened a center for Somali autism given the crises in our community – Thanks much!)

As you can see the biggest ABA provider is MAC and has been refunded over $34 million dollars in just two years. Since this is a publicly funded treatment – DHS must have a better oversight for intake, discharge, quality of care, patient rights, child progress, family input and everything else to assure safety, quality and what is best of the child/family is always done.

My questions and gentle friendly suggestions to DHS which is the agency that is suppose to assure our kids learn and progress as well as assure treatment is always child centered which means it should be based on research and science, and the family/parents have rights in what and how their child’s treatment is going would be;

1. Please make sure there is some oversight and accountability in quality of the treatment and intensity of hours is appropriate for the child and family. It can not be the provider’s way or the highway.

2. The treatments are culturally appropriate meaning our holidays are respected and we are not told to bring our kids on our religious or cultural holidays.

3. Families/parents have a system in place to make their concerns/complaints should they arise and a system to assure continuence of care during that time for the child.

4. Are our center kids safe, if they get hurt – does it get reported to DHS, are parents made aware of and given explanation, can they complain if their child gets hurt under the care of these ABA providers and what is that process for the family/parent?

5. If a child is 15 and has done 10 years of ABA in center and still not even toilet trained, nonverbal, etc – can you prevent that. I see this a lot whereby providers just keep the child in center based services to age 10 or even 18 for 40 hours a week then kick the child out after they age out, yet the child still has significant needs. What the hell has this ABA provider been doing for this child and family for the past years? This is both cruel and heartbreaking. DHS must assure kids have a baseline of their skills and an objective eval to see progress. If not, please don’t keep funding it. Ask for accountability of the treatment.

6. If a parent/family has concerns in the care and treatment plan of their child, is there a system set where they can freely and without being retaliated against speak up and give their input. Often ABA providers label those of us that ask what our kids are learning (difficult, hostile, hard to please, yada yada). In other words, if we keep our mouth shut, ABA companies keep our kids then drop them after they age out and they can no longer handle or DHS will no longer pay. There is no measure of the quality of treatment, assuring progress is being made, parents are the table of their children’s treatment plan.

This is when most ABA owners come and usually ask DHS for less rules and regulations so they can continue business as usual. This is no longer acceptable. DHS must treat these ABA providers just like it treats their other publicly funded providers, i.e child care centers, state hospitals, etc. Maybe even more oversight, because our kids with ASD can’t always tell us what happened or did not happen in these centers that are usually small cubicles.

Finally, my free advice to these ABA owners that seem to be self righteous, arrogant yet ignorant to take a flying leap and stop claiming credit for staring this new ASD benefit to assure managed care and fee for service kids get equal access to ABA therapy. You had nothing to do with when I started this and you still have no desire to take managed care kids or how their treatment will be paid. Maybe one day I will write a book about my experience in this new policy and with many of these blood sucking ABA providers in Minnesota. Autism by itself is hard and challenging – add racism, greed, bullying, arrogance, self righteousness and ignorance makes it unbearable and painful to the soul.

Above words do not reflect any committee, agency or candidate

Idil – Somali Autism Mom & Minority Advocate

Alright – so, if you follow national autism news then you heard of Neli Latson who attracted a lot of national media attention. Neli was caught up in a system that is not always fair or even understands mental health, autism, disability and mental illness. I think most in law enforcement lack the proper training, education and awareness in how to deal with autistic kids and adults. Then when you add the color of one’s skin to the mix and often subtle bias policies in law enforcement then you get the exact situation that happened to Neli Latson. You can read Neli’s story in my previous post or here or here or here or just google his name.

At last Governor of Virgina Terry McAuliffe who got injuries resulting from a vacation in Africa managed to work from his hospital bed granting pardon for Neli who will now be able to go to a treatment center. “McAuliffe was up and working from his hospital room. He was making and taking calls and even granted a conditional pardon to an autistic Stafford inmate, confirmed spokesman Brian Coy that will clear the way for Reginald Latson to seek treatment for his autism”.  Here is that full story of how wonderful this governor is in listening to everyone of not just his voters, but parents and advocates from around the country including me.

I could not help but think the contrast between our governor here in Minnesota and Gov of VA. I don’t live in VA, yet when I would call a lot to ask when and if Gov Terry can pardon this autistic young man – no one in his office ever told me that I was an angry Black woman, I did not live there, they could not do anything or call my local legislator which is what Dayton’s office does even for the voters that live in Minnesota. It was refreshing to hear kind people working in a state government office with no attitude and no elite personality.

There were hundreds if not thousands of autism parents, advocates and reporters calling about Neli, yet Gov Terry’s office never got overwhelmed, irritated, arrogant or out of touch as Dayton’s office often seems to be. It was simply amazing to see this kind of governing. It is too bad we don’t have that here in land of disparity mixed with ignorance and arrogance.

At any rate, Neli is now able to get the therapy and treatments he needs. Equally important is the fact that this has raised some important questions in how we can avoid this in the future. Although – I really have zero desire to advocate at MN state legislature this year, but If I were or If I could advice others who might is to ask a legislator to write an autism license plate legislation in which funding from that could go to autism wondering, training and education for Minnesota law enforcement in autism and other disabilities. The best person for this in the senate might be Sen Dibble and in the house – maybe Rep Dean. I think if asked or persuaded in a way that is reasonable – it could pass.

Finally, I would advice Neli’s mother who was a force in this to take her story to IACC and to Congress to assure what happened to her son never happens again to him or another child and ask for policies to prevent such tragedy.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, every year around the state of the union – some kind of survey or study comes out telling us what the quality of each state is in the United States. And, Minnesota – the land of kazillian lakes has always landed in top ten. This year it is number two best state to live and tied with Vermont in education. This caught my eye, best education – what?

If you are a minority especially Black and Brown and have children in school in Minnesota in particular in Minneapolis – then you know they are failing or about to fail. The graduation rate for minority kids in Minnesota is one of the worst in the country, yet MN ranks high in education. WTF? In other words, the achievement gap between white and minority students is so high here that it makes one wonder – why?

Furthermore, while Minnesota enjoys one of the best unemployment rate in the country – Black and Brown unemployment is the highest – WTF? Why such a disconnect and where is the love for minority Minnesotans? Minnesota also has one of the worst racial disparity for the justice system. Again, WTF?

This means Minnesota Department of Health has persistently failed Black and Brown health. This means Minnesota department of employment and economic development has failed Minnesota’s Black and Brown workforce and it means Minnesota Department of Education has failed to assure every child gets FAPE (free and appropriate public education). Above all MN DFLer’s that mostly control these agencies have failed their Black and Brown voters.

Nevertheless, this failure did not stop MN DFL chair or as I like to call him Don King of MN politics claim credit for the good things here while ignoring the failures of their Black and Brown voters in education, health, employment and so much more. I remember the first I met MN DFL chair – it was me and few other Somali autism parents years ago right after Gov Dayton had won first time. We wanted to see why his health administration was ignoring autism and not doing any autism research. I remember one of the parents told him a story about when her car was totaled and the insurance rep told her that – her first response was autism already totaled my life. Another parent who had two autistic kids told him how one sleeps from 9pm til 1am and the other one sleeps 1am til 6am, and how bone tired he was. And, I remember I was watching Mr. DFL chair’s body language and he did not even blink once or have one iota of emotion or empathy for those parents that were telling him their struggles with autism. He reminded me of Don King the boxing promoter who just promoted his fighters despite how dangerous their job was by lacking empathy and human emotion.

The state of autism in Minnesota – I think DHS and MDE are doing much better than MDH. We are definitely better off than we were last year, but there is always room for improvement. At least in autism I and few other minority parents will fight with tooth and nail for equality, but for other areas – I really hope Black and Brown Minnesotans wake the heck up and fight racial inequality through policy changes. That is the best way to beat racial disparity.

Outgoing funny man Letterman said it best.

Structural racism blamed for some of our state’s persistent racial health disparity. If you don’t know what structural racism is take a look at your office tomorrow or leadership in your next meeting if no one is Black or Brown – that is the problem and structural racism. Then read racism without racist book and make a change starting with your office.

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

Idil – Somali Autism Mom & Minority Advocate

I know this is not about autism per se. This is why this post is under my one and half cents. If we however think about the bigger issue here of are all White liberals welcoming, move us forward, progressive and inclusive then why are most districts, states, cities and counties they control from South Mpls to South Chicago to South Central LA suffering with health disparity, education gap, wealth gap and employment gap including very liberal Hollywood.

Last year when Liberals controlled all Minnesota government chambers during the final conference committee in particular the huge finance bill HF3172 – if you can believe it, I was the only Black person in this committee. And, they (not all of them) hated my guts and did not want me there. Keep in mind, I was only following autism bills, but I remember looking at the Senate Finance chair Sen Cohen and Ways and Means chair Sen Carlson looking at me like a cockroach. Don’t worry – their looks only energize me. But you would think Cohen who is a board member at Confederation Somali Community of Minnesota would at least welcome me and our autism issues. Yet, he did not and kept yelling at me in hallways complaining about my blog posts and emails to the committee members.

I also find it interesting in a comical way, how when I complained, blogged or sent emails to elected officials in Minnesota – that was somehow seen as rude and not nice. Yet, when Caucasian autism parents did the same-thing – they were simply advocating for their children. Uhhnn – I call that double standard and oh please if I piss off some arrogant Elected official then I have done my job in advocating to change the bias systems and policies they have written or pushed.

In other words, Amy Pascal and Scott Rudin making racist jokes about the leader of the free world and the president of the United States with a Harvard Degree is no different when White liberal politicians like Sen Cohen or Rep Carlson write and enhance bias and unequal autism policies. By the way, disparity comes from racism and racism comes from power plus prejudice. It is also no different when Sen Franken from SNL has no Black policy person in his office. You see the problem is not them, it is us. We need to learn how to vote differently and how to negotiate with our voting block power.

Now, Hollywood does not need Black votes, but they need to be BFF with the Black community and this is when minority actors, directors and producers form a coalition that has lobbyists that fight better roles and jobs for them. If not, they take it to TMZ or other media outlets. I think Chris Rock recently said that Hollywood was a white town and that should not be a surprise, but it can become a energy source for change.

Many moons ago before autism invaded my life, I wanted to be a Hollywood journalist and publicist that solely supported minorities in the industry. (oh please – don’t let the hijab fool you, Muslim women dream too). We are all products of our environment and as a young person growing up in Boston especially in the era of Willie Bennett – I know how powerful the media is in shaping people’s minds which then shapes not just Hollywood, but all kinds of policies. My advice to Black Hollywood is you need a Black and Brown Amy Pascal and Scott Rudin. Don’t settle for anymore slave or maid roles, demand better and except nothing less. Become directors and creators of your own shows and films like Tyler Perry and Spike Lee have done.

Finally, I think Malcolm X said it best when he described decades ago America’s white liberals and white conservatives. They say in Somalia a loud hyena is better than a quiet hyena. At least, you can run or defend yourself with the loud one. How do you fight quiet injustice rolled up with a hint of sugar that becomes salt in our communities. Malcolm X Said (white conservatives are not friends to black people but at least don’t try to hide it. Malcolm X had even harsher words for white liberals. He judged them to be “more hypocritical than the conservative.” He accused white liberals of “perfecting the art of posing as the Negro’s friend and benefactor” while using black people as a “pawn or tool” in their political fight with white conservatives. By the way, this is exactly what Sen Landrieu of LA did by pretending to be with Blacks when talking to them and against them when talking to Whites. I am glad she lost.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, if you follow national autism news then you heard that Seinfeld the actor and comedian oh and the millionaire diagnosed himself with autism during an interview on NBC with Brian Williams. Well, this made some advocates and parents pretty mad and some who are always desperate that our kids and adults with autism to be different not disabled were very  happy. Then Seinfeld said oops sorry, scratch that – just kidding I am not really autistic. WTF, who plays with such emotional and toll taking disorder like autism. Well – only over-rated Hollywood – please look at me, pay attention to me actors that have no idea the real lives of autism families.

My take was – are you kidding me. The show Seinfeld was based on an abstract comedy not falling down then laugh comedy. And, excuse me but understanding and creating abstract anything is soooooo difficult for our kids and adults on the spectrum. I think Kim Stagliano from Age of Autism who has three kids with autism put it best. My heart goes out to parents like Kim who have more than one child on the REAL spectrum.

I am sorry, but Seinfeld did not just acted on his show, he created it. Heck, I would like his kind of autism. I think out of touch celebrities who might not understand autism by any means think they can self diagnose themselves. The problem with this is – those with influence and power see these people and assume they represent all autism. How bad can autism be if Jerry Seinfeld has it

There are true autistic heroes like Temple Grandin, John Robison and Ari Ne’eman who are all autistic and have achieved so much, but Mr. Seinfeld – come on.

Autism is a nuero-developmental disability and while it affects each person differently, these kids/adults have many challenging and difficult things they deal with daily.

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

Idil – Somali Autism Mom & Minority Advocate