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Alright – so, The holidays are around the corner which is when families travel and take vacations. Many families who have children with autism avoid flying because they are unsure how their children will respond. Often autism families don’t go on vacations fear of travelling and how their children will react at the airport and in the airline. I remember once travelling with my son to Los Angeles, it was too overwhelming for him. I wish I knew about this program because I would’ve eased him into flying until he was comfortable. Often children with autism need to see things and places more than once to feel comfortable. To ease this anxiety and stress associated with an airport visit and flying, the Metropolitan Airports Commission and others have teamed up to create the Navigating MSP Airport. The program includes monthly events, all designed specifically for individuals with autism, that guide families through the steps of an airport visit, from walking in the door to finding their seats on a plane.

During the Navigating MSP Airport event, families will have the opportunity to familiarize themselves with airport and travel procedures. Children will practice entering the airport, obtain a security pass, go through screening at a TSA security checkpoint and walk through the airport to a boarding gate. To culminate their experience, children and their families will board an aircraft and find their seats. Please note that the aircraft will remain on the ground.

In addition to preparing families for a positive travel experience, the Navigating MSP Airport program also will provide a valuable training and awareness opportunity for the airport staff, airline and TSA personnel to learn how to accommodate children with autism and other disabilities.

Families are invited to participate in any of the Navigating MSP Airport event sessions, scheduled for the first Saturday of every month for a fun and practice run while learning from airport personnel what works and what doesn’t work to make travelling experience efficient and less stressful. I think it is very important to take children with autism to vacations and exciting places. Always let the airline crew know ahead of your child’s diagnoses and needs. Ask them to let you sit near the front so you can get in last and get out first to avoid sensory overload when everyone stands in the airline. In order for our kids to be integrated into their community and society, we must take them everywhere we would typical children. It will take patience and practice which are two qualities autism parents have. Even small steps such as taking our kids to the malls or grocery stores are a good start.

Click here for more information. Additionally, TSA Cares can help children who may get overwhelmed with airport noise and crowds. Call them to find more information.

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

Idil – Autism Mom

Alright – so, Sen. Abeler whose Minnesota Autism Task Force legislation he wrote the last session did not pass because it was in a big unrelated bill that Governor Dayton vetoed came up with a different plan – an autism council working group.

He announced it in his committee mid-October and appointed three Caucasian members to select the remaining members. No person of color was part of the selecting committee. Already a bad start.

The three selected are Jean Bender who has been in almost every committee in Minnesota from the previous autism task force to being a member of Arc and Autism Society of Minnesota. In fact, Jean bounces from one mainstream agency to another. She has a child with autism.

When she and I served in a previous autism task committee, Jean always voted against equality. In my humble little opinion, she is arrogant, charming, passive-aggressive and polite. I remember once she and the current chair of the Bloomington Public Schools – Dawn S took off the Somali autism agency which I was a part of from the task force – their reason – wait for it……pls wait…..it is so Minnesota Nice!

They said – well Idil, you don’t speak for every Somali autism parent. My response was simply – do you speak for every white autism parent in Minnesota. Then save your useless opinion. At any rate, the fact that Abeler would pick her is worrisome and concerning.

It is also worrisome Abeler who knew from the get-go what our fight was always about would write a legislation that would have any selective and discriminatory words such as anyone who served in the 2011 autism task force would not serve in the current one which would’ve eliminated Jean, Brad T and others. I am deeply disappointed in Sen. Abeler whom I consider a good friend and almost like a brother because he and I have been around the autism block.

The second person that Abeler picked is Wayne R who also has a son with autism. In my humble little opinion, he is not too bad unless of course, you are a parent who does not believe vaccines cause autism. Then folks like Wayne are mean-spirited towards other autism parents. In fact, he and his anti-vaccine group have used, manipulated and divided Somali autism parents.

The last and third person is Sheryl Grassie whom I don’t know well and don’t have an opinion on. Actually, update on this. I met Ms Grassie after she reached out to me back a few years ago when she was advocating for an autism residential housing which I was not able to help her with because I did not think it related to our community culturally. Oh boy, she has not changed. Still as cocky as she was back then is what I remember.

My hope was that Sen. Abeler’s first picks would reflect Minnesota’s autism population, but they are as white as vanilla. I am surprised at Abeler’s move as this is not usually like him.

Below is what Abeler’s language is for this so-called autism council. I for one have zero desire to be part of it but I will blog about it and update what they do or don’t do.

Click here.

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

Idil – Autism Mom

Alright – so, Sen. Abeler wants to appoint an autism working group. I am not sure what they will need to produce. But according to Abeler, people can apply with his office and he has appointed three people thus far. He did not tell me who those three are. Abeler is the chair of Minnesota Senate for Human Services Reform Finance and Policy Committee. This is being introduced today in his committee and was just announced late last night which is not unusual but not fair either because it does not give autism folks especially parents time to go to the committee.

I wanted to testify but the committee administrator Larissa told they are not taking public testimony which I think is also unfair because if it is a public council then the public should have a chance to speak about it. At any rate, I just sent below email to the chair and committee members. I encourage autism parents and professionals to apply and email it to sen.jim.abeler@senate.mn. 

Dear Mr. Chair and Committee Members,

My name is Idil Abdull and I have a 16-year old son with autism.

First, I would like to thank the chair – Sen. Abeler who has been a friend to the autism community in Minnesota for years before it was hip to be an autism friend.

As you may know, autism is extremely high in the Somali community of Minnesota for reasons unknown because no one has done any research to find out. Autism is 1 in 59 nationwide and 1 in 26 Somali children born in Minnesota. This is insane and unless we find out why and help these kids – there will be insurmountable consequences for our state. 

I respectfully ask that you appoint a diverse group from various communities including Somalis, Hispanic, Hmong, Caucasian and Native American autism parents whose children are different ages from toddler to adult to get different views and perspectives. I also hope you appoint various researchers from different universities and entities, not just U of MN, individuals with autism, public teachers, community advocates, ABA therapy providers, speech/OT therapy providers, EIBDI providers as well as someone from DEED, MDE, DHS, MDH and county association. 

In other words, it should be a working group that represents and reflects Minnesota autism communities fairly and adequately. 

Once again, thanks so much for all that you do for individuals with autism and their families!

Alright – so, autism is only getting higher and higher. The ADDM numbers from CDC keep growing, but no one in CDC, NIH or any state health department are alarmed. Autism parents are told the numbers are higher because we are getting better at diagnosing. That may be true for autistic individuals who are verbal and may have some social delays, but for the Somali community better diagnosis ain’t it. Somalis are an oral society, yet our children with autism are mostly nonverbal. This is not normal. Minnesota Department of Health (MDH) also known as the do nothing health agency has zero desire to find out why it is high in our children and why our children are nonverbal.

I remember when Gov Dayton was running for office, he made so many statements about autism. He said he will look into why it was high in our community. He did not. His first health commissioner said he will look into it, he did not. So many politicians especially DFLers said they will look into it just to get our votes, they did not. In fact, the last commissioner that looked into autism research in the Somali community was Dr. Magnan who worked for a republican governor – Pawlenty. The last autism research from the state legislature was from Sen. Abeler and Sen Hann – both republicans. In the interest of fairness, the last federal autism research funding in the Somali community was from NIH, NIEH, NIMH under President Obama and of course was initiated by previous director of NIMH Dr. Insel (by far my fav autism researcher), and Dr. Daniels who is the current director of NIMH’s office of autism research, and a wonderful human being.

It is an election year again, and Minnesota Governor candidates in the DFL side – Murphy who lost and good riddance always voted against autism in any community including EIBDI and Minnesota Autism Task Force. Candidate Johnson seemed to care the last time he was running, not so much this time. Candidate Walz says all the right things, but I have learned to not always believe what a politician says during campaigns.

All I ask of autism parents and families is vote wisely, vote based on policy not politics. Policies drive everything. We as autism parents need to know what causes autism for our children and for the sake of future children. Did you know that irrespective of what state health departments do or don’t do – their funding is always the same. Think about it. Why would MDH do anything if there is no incentive or consequences. This useless policy can be changed by congress. Who we put in office can change it but we have to negotiate and bargain with our votes before they win. University of Minnesota’s ICI department headed by Dr. Hewitt also known as Dr. Headache is in charge of Minnesota’s autism prevalence numbers which they told us autism is 1 in 26 (1 in 59 nationwide) for the Somali community. As usual, Dr. Headache could care less the impact such high numbers have on real children and real families. How does ICI get funded by state and federal funding. Who is in charge of state and federal agencies – those that we elect. Vote wisely.

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

Idil – Autism Mom

Alright – so, Minnesota Department of Human Services (DHS) held a meeting with autism therapy providers and few autism parents last week. DHS wants to propose changes to the existing autism intervention statute that governs early intensive behavior and developmental intervention (EIBDI).

I think this is a good idea. Some of the proposed changes are the qualifications for level one therapist. Other changes are agency responsibilities and parent rights. According to the Minnesota Department of Education (MDE), there are over eighteen thousand children with autism. Many of those are not getting any autism therapy interventions and we need to have the capacity to help these kids and their families.

I mostly agree with the changes DHS wants to make. I also agree with their parent rights proposal. I would just add where the family can go to appeal if they disagree with the provider’s treatment plan. I would also like to see DHS engage more with families and help them understand their rights and responsibilities. I would like DHS to ensure providers understand they can’t just discharge the child for no reason. There must be a reason with data and facts, the family must be part of their child’s clinical team as equal partners and there must be a transitional plan in place for the child.

In other words, we don’t want these blood sucking and greedy providers (not all of them) to just discharge kids because they feel like it. The appeal process must be clear and easy to understand by all parents including minority families or those who may not understand the legal lingo of the appeal process within DHS. As an autism mom who used DHS’ appeal process – I strongly recommend DHS help parents learn and understand this complex system.

I have seen some autism therapy providers discharge children who were five years old and said the child was too old, I have seen kids discharged because they were nonverbal, lived in poor neighborhoods, the parent asked too many questions – yada and more stupid yada reasons.

I have seen DHS issue corrective action against some of those providers telling them they were wrong and violated Minn statute that states person-centered and family friendly services. I have seen the Minn Disability Law Center and the Minn Ombudsman’s office defend autism families who have been screwed by autism therapy providers. I really think DHS needs to be a little less provider friendly and a lot more child/family friendly. After all it is the child and their family who need the services and treatments.

Another area where folks had a lot to say was DHS’ new online CMDE and ITP forms. DHS changed this end of last year without any parent/provider and stakeholder input. Obviously this was not a good move and we complained to the Centers for Medicare and Medicaid (CMS) who pays half of EIBDI services. Additionally, the EIBDI statute clearly states DHS needs to engage with stakeholders before it makes changes. Additionally, it put extra steps that many low income autism families would not be able to have such as having access to the internet. Not all autism families have access to the internet and the Medicaid agency can not demand that. We have since then negotiated a more appropriate and doable process.

Overall, I think DHS autism division is getting better in serving children with autism and their families. They are trying to be more diverse, translating their services in various languages, and being in compliance with LEP federal law. Their staff are not cocky anymore and are actually walking on the ground. They have a new supervisor who I think is simply fantastic.

Here is the parent rights proposal and I would urge any autism parent/family to send their comments to DHS because if we don’t speak for our children no one else will.

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

Idil – Autism Mom

Alright so, Minnesota Department of Human Services (DHS) is headed by probably one my least favorite commissioners  Piper – well maybe MDH’s Ehlinger takes that price. Ok, my second least fav. At any rate, DHS under Piper keeps getting worse and worse. Let’s start with their autism policy lead – NB.

Have you ever heard of privileged WASP? ok, so Polling at MDH takes that price. Ok – well maybe the female version of privileged WASP would be NB at DHS. I have seen manikin’s with more empathy and compassion. But that is not even the problem.

I worked extremely hard to get Minnesota’s early intensive behavioral and developmental intervention (EIBDI) to be passed by the Minnesota state legislature in 2013 then worked even harder for The Centers for Medicare and Medicaid Services to approve it. One of the requirements was that DHS would engage with autism community stakeholders before it made any changes to EIBDI or before it wrote any policies involving EIBDI. Well – DHS policy lead, NB throws that out of the window with Piper’s blessing and Wilson’s blind eye. I have seen Piper fire people from DHS because they were not DFL enough as though DHS is the Minn Dept of Democrats. I have seen Piper diminish the responsibilities of really amazing folks at DHS who has helped us so much before, yet autism policy lead who in my opinion is as cold as Minn ice, as ignorant as Sarah Palin and as cruel as Clarence Thomas is still there. Who suffers in all of this chaotic environment? autistic children and their families as well as small agencies that are providing autism therapy.

So what did DHS change and did not consult with anyone? Well how comprehensive autism evaluations are done, how the treatment plan is processed and submitted, how parents have access to this or don’t have access to it, and so much more. Counting the days when Piper is no longer at DHS – that is in November when Governor Dayton’s term ends and god willing a different governor wins, preferably not Liebling or Murphy. That is another day and another blog.

The person that I am most disappointed with is Alex B who is in charge of DHS’ disability division. Alex knows right from wrong and has been around the block in autism issue including autism in the Somali community. But as the saying goes, you can lead horse to water but you can’t make him drink it. I am also disappointed with Asst Commissioner Claire W who on the surface seems genuine but still so much BS happens under her leadership and she allows it.

Above words do no reflect any committee, agency or candidate.

Idil – Autism Mom and Advocate

Alright – so, 1 in 68 U.S children have autism, 1 in 32 Somali American children in Minnesota have autism and boys are more likely to be autistic than girls. These boys become young men of color, mixing that with law enforcement is devastating to think about. Autism is a neuro-developmental disorder that affects a person’s ability to communicate, understand social cues and regulate their behavior.

As a minority autism mom whose child has autism – I constantly think about this. My son is now 15 and still has autism as there is no cure thus far for autism. He doesn’t always understand social cues and may not always follow directions. A police officer may think an autistic individual is being defiant and not listening. An autistic individual may get sensory overload and be overwhelmed by too many verbal directions or even the police car’s lights. There have been few occasions where my son had a behavior in the car and I had to call the police for help. The first time though it was my fault because I didn’t say what kind of help I need it, the state trooper that came pointed his gun at me. After I explained the situation, he was much more nicer and understanding and helped us get into a safe exit as we were on the highway. The consequent times, the police has been positive, helpful and understanding. Nevertheless, the fact that so many of them don’t really know autism or its symptoms is worrisome.

While, I have not heavily advocated for this, I have asked Commissioner of Minn Dept of Public Safety to add funds to their budget for autism training, and she has not. I also asked Mpls to train their police officers about autism and Mayor Hodges has not done this. Mpls City Council member Warsame and State Representative Omar who are both from Somalia and represent large autism families have also not done anything about this.

An African American man recently told me “when police are driving behind me, I don’t feel served or protected”. I thought that was sad yet true.

As I write this – I am saddened that my son had a behavior in the car tonight and I contemplated whether I should call the police or just sit in the highway which was dangerous while he calmed down. No one should have such a thought. If I were white, I would not have to think twice to call the police for help. But I am black and live in Minnesota which sadly does not have a good reputation for equality. If you are white and are reading this, you are thinking when anyone needs help they just call the police, but for a minority person it is not that easy. The history between law enforcement and communities of color is a complex and complicated one.

A few months ago, a reporter from Buzzfeed called me about my advocacy and autism. I remember telling her that I was done advocating but maybe I am not done yet. I really would like to figure out how to effectively advocate about autism and police. How can minority autism families feel comfortable about the police whose job is to protect and serve. I would like minority autism families to feel protected and served by the police. I think through training and perhaps compassion from the police and trust from minority autism families – it is doable.

New York Times op-ed about autism, law enforcement and St. Paul officer who has autistic children.

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

Idil – autism mom and advocate.

Alright – so, Minnesota Autism Center (MAC) which is arguably the biggest ABA therapy agency in Minnesota, and probably the worst in how autism families are treated based on my experience with them and opinion has expanded their fake ABA school program. They have added more kids in their Eagan location. Let’s put this into perspective, this is not a private school because no parent pays one dime for it. It is not a public school because the Minnesota Department of Education does not give them one dime. It is a fake ABA school that is funded by Medicaid through Minnesota Department of Human Services (DHS).

Medicaid does not and should not cover educational services, according to DHS but for some reason – this fake school keeps getting millions of dollars from medical assistance via DHS. Why is DHS doing this and what are they doing about it? In one word – nothing. The why is what puzzles me. Let’s remember DHS goes after minority owned agencies if they sneeze the wrong way, but when it comes to WASP owned agencies, they nap, sleep, ignore, pretend to not see or hear. I wonder why that is. Institutional racism? well – as the saying goes “if it looks like a duck, acts like a duck it is a DUCK”.

I have been trying consistently and persistently to get DHS to treat all autism therapy agencies fairly to no success thus far. Their reasoning for not auditing or looking into the fake MAC school is probably in my opinion and many others in the autism community fake in itself. “we don’t have proof”. But you have an abundant amount of suspicion, so audit this fake school. My favorite other reason from DHS is “it is a complex and complicated issue”. Are you bleeping kidding me. When God forbid, a Somali day care agency does anything wrong, you are on them like white on rice and faster than a New York minute, but for MAC – it is complicated. Come on DHS. We are not buying this fake reason.

According to DHS “Medicaid does not cover services that include or replace academic goals that are otherwise included in the person’s Individual Education Plan (IEP) or Individual Family Service Plan (FSP), as required under the Individual with Disabilities Education Improvement Act of 2004”. This includes math, reading, writing or any educational services that are and should be covered by the child’s education plan.

Nevertheless, these items are exactly what the fake MAC school is teaching. My advice to Commissioner Piper and Assistant Commissioner Wilson – audit this MAC fake school that is being funded by Medicaid when it should not be. Interview current and previous employees who are told to provide education but write medical in their progress notes. Interview families who think they take their children to a free private school that they pay nothing for and are told Medicaid covers education, you know it does not. Visit this fake school and see it for yourself. Treat MAC as you treat all of the Somali day care centers and protect these vulnerable autistic kids and their families.

DHS – this is your responsibility and obligation to protect individuals with disabilities which includes autism.

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

Idil – autism mom and advocate

Alright – so, the Minnesota Department of Human Services (DHS) is in charge of individuals with disabilities, the poor, and the elderly. Their core responsibility is to assure these vulnerable individuals are treated fairly, equally and get the services and support they need. DHS is funded partly by the state via state legislature and part by the federal government via CMS. It is a multi-billion dollar state agency that functions as a mini country.

DHS hires or contracts with Keystone Peer Review Organization (KEPRO). What they are supposed to do is review medical information for children that need autism therapy via the new ASD benefit EIDBI or the early intensive developmental behavior intervention. Sounds easy and straight so far, right? Not so fast.

Well – KEPRO reviewers decided to review, process, and authorize children’s medically necessary treatments….wait for it…. not in the order they are submitted to them but….wait for it…. in the order of the children’s race and ethnicity. I kid you not. When asked about that their informal response was “well – that would take a lot out of us because we would have to go into each child’s information to see their race and ethnicity, therefore because we are lazy and don’t do that, it was just a coincidence”. Right, and we are all stupid here. KEPRO received nine children’s treatment to review, of that nine 6 were Black and 3 were Non-Black. KEPRO processed and approved the three Non-Black kid’s treatments even though their information was submitted after the Black children’s information. For the six black kids – they denied and asked for more information they did not ask for the non-black kids even though all of the kid’s forms were filled the same way. I kid you not.

Please don’t tell me that is not blatant discrimination.

My take is that they are not lazy. In fact, they are very smart and shrewd – they just didn’t give the parents of those minority children the same credit and assumed their silly excuse would be bought. I for one am not buying that poor excuse.

This KEPRO is the same agency that has authorized services for ABA agencies like BDI for children whose ITPs were not even signed.

If it looks like a duck, walks like a duck, and authorizes like a duck – it is a freaking duck.

What KEPRO did was clearly subliminal racism and what DHS is doing afterward is even worse. A child with autism is a child with autism is a child with autism – irrespective of their race, ethnicity, or background. I am disgusted with KEPRO’s actions and I am appalled of DHS’ lack of action in this matter. I urge these parents to sue KEPRO and DHS because doing nothing will give them the green light to do it again and again.

The above words do not represent and candidate, agency, or committee.

Idil – Autism Mom & Advocate

Al-right – so, a Black behavior therapist was shot few days ago while he was helping an individual with Autism Spectrum Disorder (ASD). What we know so far and how could this happen.

1. The person with ASD wandered from a group home as sadly many do. Wandering and eloping are some of the core symptoms of ASD.
2. His behavior therapist went after him to calm him down and bring him back. This is usually the case for all care-takers.
3. Some observer thought a man was committing suicide because of where they were at (in the middle of the street). This is not uncommon as many individuals with ASD don’t have safety skills.
4. The police is called and an untrained one shows up.
5. The behavior therapist tells the officer who he is and about his disabled client.
6. The officer who is Hispanic either didn’t hear, didn’t understand autism or didn’t care shoots the behavior therapist.
7. Then the therapist is handcuffed as he bleeds on the street. Thanks God – his injury is not life threatening and is recovering now.
8. The Miami police chief who is Black and was hired by a Black mayor and a mostly Black city council makes a somewhat scripted statement of we are shocked, we want answers, blah blah.
9. Then the Miami police union head says the most disturbing words so far – not kidding. The police was aiming at the autistic person and not the therapist. WTF?

Here is my take, why can’t these police union nut-jobs keep their mouth shut. They always seem to say the most hurtful and ignorant thing about any situation. How is we wanted to shoot the disabled person any better?

So what happens now? Well – for starters, we can’t blame white racism on this one. Everyone with any power in North Miami is a minority from city council to the mayor to the police chief to the shooter who is Hispanic. But we can blame it on ignorance, lack of autism education and training and most of all arrogance about all of this. As an autism Black mother – this is obviously really heartbreaking and disturbing. I think we need a federal legislation mandating and requiring autism education and training for all law enforcement. Currently, we don’ t have that. Most states and cities do some kind of training but it is not comprehensive and they are not required to. North Miami was not required to do autism training and it is unclear if this officer had any so far.

I contacted Autism Society of America President Scott whom I know and he sent me the statement they released. Scott also said they are working with the Autism Soc of Florida to do ASD training for this police dept, though we don’t know to what has been reached now. Additionally, I contacted both Mpls and St. Paul mayors to ask about ASD and police training. Mpls is working on a response, but did say via email that they have allocated funding for devices that would help locate individuals with ASD that wander . St. Paul said they have an officer with a child with ASD – Officer Zink whom I spoke with and was just amazing in how he gets what needs to be done. He said there is a small funding in the big tax bill that Gov. Dayton vetoed for autism training and police officers. Officer Zink stated that Sen. Dziedzic was the one that was pushing this funding. Sen. D represents the district with the largest autism population in Minnesota which is Cedar in Mpls. Additionally, I contacted IACC and asked what they could do about from the federal government side. I heard from one of the members, Dr. Mandell whom I respect and admire so much who said IACC does have a responsibility to recommend and request more training and research into this issue. I agree and I am waiting for more info from IACC. At the federal level, IACC can do the most in terms of services, resources and research.

I also contacted DPS Commissioner Dohman’s office wanting to know what kind of ASD training their highway police go through. They said they have an ASD training for their 600 state troopers. I am waiting to get more details of that training and if we can add multicultural training given the high rate of ASD in minority children in Minn. There is a bill in Congress HR-2302 which requires police training and better oversight for minority communities and those with disabilities. It has not moved much though. Another bill about autism and wandering named after two ASD kids passed the senate recently – Kevin/Avonte legislation. ASAN and other ASD advocates are supporting this. Please call or email your house member to ask to co-sponsor this bill and pass through the house.

I will post as I find out more about this, but what is clear is the need requiring autism training in law enforcement. We can’t always react, we must be proactive here and create laws and policies that address this in Minnesota and nationwide. Autism by itself is extremely challenging, when you add minority especially black boys/men – it is a worry that unless you are a black autism family, you can’t even imagine it.

I thank all of the media attention given to this important issue in particular the reporters from the Miami Herald.

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

Idil – Somali Autism Mom & Minority Advocate.