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Alright – so, Minnesota Autism Center (MAC) is arguably the largest autism therapy provider in Minnesota. MAC serves hundreds of children with autism and their families. Kathryn Marshall who has a child with autism has been their face since inception. MAC was families for effective autism treatment (FEAT) before it became MAC. Then there was that falling out with what later become Lovaas. Well you know the story if you are in the autism community. I have blogged and blogged about MAC for many years and had a love/hate relationship with them. I loved what they did for many autism children and families yet hated how many autism families including me were treated by them.

I remember the last time MAC discharged my child without reason or even notice, I told Ms. Marshall and Ron Carey to consider me a permanent hemorrhoids and that I would advocate against their bullying tactics against autism families until it was no more. In fact, after they discharged my kid suddenly and for no good reason, Minnesota Department of Human Services (DHS) issued a corrective action against them and told them they were in violation of Minnesota statutes that protects children with disabilities under children’s therapeutic support services (CTSS). DHS also told MAC that they could no longer just discharge children from their medically necessary treatments, and that MAC had to involve the parent and report how many children they discharged to DHS. According to DHS records MAC has discharged 20 children in 2016 and 40 children in 2017.

Say what you want about Ms. Marshall and I clearly was not a big fan, but no one can argue that she shaped the landscape of autism therapy in Minnesota. MAC is the only agency that served children from Minneapolis to Rochester to Mankato to Duluth. She built state of the art facilities for kids on the spectrum that would put a Hilton hotel at the bottom. Yes, I know she bullied families and even some staff but in the interest of giving credit where credit is due – Ms. Marshall was unique and tough.

There is a lot of rumors going around in how she departed from MAC, some stating she was fired, some stating there was fraud with DHS and some stating MAC’s board finally just had it. Whatever the case, I thank her for what she did that was good for our kiddos with autism.

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

Idil – Autism Mom

Alright – so, today is world autism day – April 2nd, 2018. This month is also autism month. How far have we come and how far do we still need to go?

First, let’s start with how far we have come. I would say really far. Many states cover autism therapy either through Medicaid and/or through private insurance. This means parent’s don’t have to move to a different state in order for their children get the services and treatments they need. We have also come far in the growing number of autism therapy agencies and autism schools operated and owned by autism parents. Autism parents are even going back to school and getting ABA or other autism therapy degrees.  In Minnesota alone, – there are several autism therapy (ABA) agencies that are owned by autism parents. There is also an autism school that was started by autism parents in Minnesota and around the country. There is definitely greater acceptance towards autistic individuals. Our children and adults with ASD don’t get stared at anymore because they have autism or display autistic characteristics. Many restaurants, airlines, shops, parks, etc. are more accepting, and our children and adults with autism are able to participate more in their communities and live in more inclusive lives. We now have lots of evidence based interventions to help our children, teens and adults with autism. These are all good and positive things!

How far do we still need to go?

Well – Despite many businesses being more inclusive – sadly there are those that are becoming more exclusive and denying autistic individuals the right to enjoy life as well as everyone else, namely Disney. Not the happiest place for children with autism. I think what Disney has done is a shame. Even if there was abuse in the previous system, they could’ve made it so that they requested proof of the disability – maybe from the child’s doctor or mental health professional, but to alter the whole system and hurt those that are not able to wait in long lines or tolerate it was wrong. I hope those parents who have appealed win in the next cycle.

We also have not come far enough in research that actually decrease disparity, particularly those that are nonverbal and those that are minorities. For example, we know that autism is a behavioral disorder and all behaviors are culturally relevant, yet there is not a reliable testing tool for that.

We have not come far enough in the areas of law enforcement and autism training. Children with autism who have behaviors grow up to be teens and adults with autism, and we need to educate law enforcement how to understand autism and help them. In Minnesota – I tried to get this going but have not been successful thus far. Minnesota Department of Public Safety added 15 minutes of autism training for their state troopers, but the governor’s office was not willing to add funding to its budget for it this year. And, while I did not heavily advocate for this, from what I gathered couple of GOP and DFL legislatures – they were not really interested. Maybe Sen. Kari D – but even she was all talk and no action with legislation. There are so many stories about this and I really hope we get this ball rolling in Minnesota and nationwide. I also hope that IACC takes up this issue and pushes it from the federal government’s perspective. Miami incident, Arizona incident, Texas training video. This is an area that needs more attention from autism advocates, parents private/government agencies and politicians.

Many around the world including the United Nations will recognize autism today and this month, and as an autism mom, I am grateful that while we have ways to go, we have come really far from the refrigerator mom days. Finally, if you follow autism blogs like I do then you have read CDC delayed the new autism numbers. I am sure the numbers will increase and I am sure some will say it is due to more awareness, some will say it is due to vaccines, and some will say it is due to genetic. While the autism community fights over what is causing the increasing numbers, our children need help. I really hope we can come to some kind of a compromise and concentrate on helping individuals with autism live better and more inclusive lives while finding ways to prevent this disorder.

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

Idil – Autism Mom.

Alright – so, Lt. Governor of Minnesota has been appointed by the Governor of Minnesota to replace the outgoing current Senator Franken. What does this have to do with autism – everything.

Most autism research comes from the federal government via federal agencies who are charged to either do autism research, fund it or provide services and resources. Autism Cares Act is a huge autism legislation that allows autism research funding, services and resources. It also governs IACC which we all know is an extremely important autism committee. Sen. Franken voted for this bill few years ago and is part of the congressional autism caucus. I guess Franken has somewhat come along in autism issues, although not nearly as good as he could have been. Initially, his office in particular the state office headed by Ms. Peterson has been difficult and defensive in every corner. I remember back when I was advocating for the Autism Cares Act – Franken’s office complained about me to the Somali community’s director. Of course, that only energized me. Then his office refused to meet with us initially nor write any letters supporting our advocacy efforts. I think they wrote couple of letters after we complained to his chief of staff and Franken met with us. I must say in that meeting, he said a lot but nothing significant nor did he do anything for the autism cause.

He also was a member of the HELP committee which is an important committee. Now, things will be even worse as Ms. Smith is a lot meaner and less caring if you can believe it. We (autism parents) contacted Smith back when she was Dayton’s chief of staff and requested a meeting with Gov. Dayton who met with non-minority autism parents and others. She told us to take a flying leap through Ken Martin – MN DFL chair. Martin told us while Dayton is too busy for us, Smith can meet with us. We declined and told her to take a flying leap.

Fast forward when Dayton picked Smith as his running mate and they won (sad). Then Smith became in my humble little opinion – a heartless hammer and did zero, nada, nothing about autism issues. This included MDH not doing any autism research, any meaningful outreach or anything autism at all despite our repeated requests. Previous Mayor of Mpls – RT apparently nick-named Smith “velvet hammer”. In my opinion, there is nothing velvet-like about Smith. Instead, I think she is a heartless hammer with a hint of Minnesota passive aggressive personality.

In summary, Sen. Smith will do even less than Sen. Franken which is sad for all of autism children and their families in Minnesota. Hopefully, she won’t win in the election. Dayton should’ve appointed Rep. Ellison (who is more qualified than Smith) given the low number of African Americans in the Senate, but of course he didn’t, instead he gave the job to his friend – Smith.

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

Idil – Autism Mom & Advocate

Alright – so, Bloomington Public Schools for some unflattering reason several years ago decided to put all students with autism from kinder-garden to eight grade in one long scary and quite hallway. This clearly secluded the kids from their typical peers and kept them out of sight and out of mind. As you can imagine, I was livid and advocated with everything I had. Needless to say, at the beginning I was met with resistance from the district who kept explaining to me – it was my mis-understanding and the kids were not secluded.

Well – have you heard of the saying – if it looks like a duck, walks like a duck – it is a bloody duck. Well – putting students with autism in one corner of a building for ten years from kinder-garden to eight grade was a duck alright. I don’t think segregating and secluding children with autism from their peers is a good idea and is the opposite of least restrictive environment learning under the IDEA law.

At any rate, after many complaints to MDE and US Department of Education, along with the director of special education’s understanding my views – students will now go to their home schools. This means elementary kids with autism will attend school with their peers at an elementary school and middle students with autism will have their classes mixed-in with their typical peers.

An interesting point here is when I asked other parents to join with me in this, most were just too tired to fight or didn’t think anyone would listen to them. I can totally understand this point, but if parents don’t speak for their children with autism then who will?

I personally would like to thank the superintendent of the district and the director of special education who even when we disagreed which was often at the beginning always looked at what was the best interest of the children. I also like thank the commissioner of the state education department who I can’t even count the number of times I’ve called her. Finally, I would like to thank Jan who I call a chamomile tea because she was always the calm voice that provided the glue between the district and me. In the end, the students with autism will benefit from this. Starting next school year in September, no more student with autism will be secluded or segregated from their peers. And, that is priceless.

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

Idil – Autism Mom & Advocate

Alright – So, Interagency Autism Coordinating Committee (IACC) appointed a new chair – Dr. Gordon who was recently hired to lead National Institute of Mental Health. Previous Director of NIMH, Dr. Insel and chair of IACC left to work at Google not too long ago. Dr. Insel by far is a rare scientist and leader. I have watched how he would deal with his critics and he almost reminded me of previous Commissioner Jesson of DHS. He never let them sweat him. He just focused on the light that was at the end of the tunnel. Brief history of what IACC is and what they do is – IACC has federal representatives who are usually the directors of federal agencies that have anything to do with autism, such as NIH, NIEH, NIMH, HRSA, CDC, CMS, FDA, U.S Dept of Education, U.S Dept of Defense, etc. It also has public members that are appointed by the U.S HHS. Secretary. I was lucky enough to have served the last cycle and appointed by Sec Sebelius.

This cycle of public members are equally great. IACC is charged with updating the national strategic plan for autism in the country and make recommendations to the Secretary of HHS, Congress and the administration. It is authorized by Congress, starting with the Combat Autism Act of 2006 and reauthorized by the Autism Cares Act of 2014.

I would encourage anyone that works in the field of autism or is parent/relative of an autistic individual to sign up in their list-serve to get updates of meetings which are open to the public and transparent per federal laws. I would also suggest anyone especially autism parents to send their questions and comments to IACC. They really do listen and validate parent concerns. I am the perfect example of that. IACC is where I first advocated at the federal level which as we all know now resulted so much attention and research for autism in the Somali community.

This time around – there are some extremely amazing researchers – actually everyone is really good, but Doctors like Shattuck, Odom, Kasari, Gerhardt, Rice, Lawler, Klin, Lord, Buie and Wiggins – I mean seriously – does it get better than that. These are the crem de la  crem of autism research in this country and probably in the world. Of course, members Dawson & Mandell and Harris from CMS simply rock in my humble little opinion.

Below is the announcement from IACC about Dr. Gordon. I wish him and everyone at IACC well this cycle, I am sure they will recommend research that covers the current gap. I think research that looks in policing and autism, nonverbal autism, safety, GI issues and access to services/treatments for minority autistic kids is what we need.

Dr. Joshua Gordon Appointed as New IACC Chair

Dr. Joshua Gordon, who was appointed as the Director of the National Institute of Mental Health (NIMH) in September 2016, has been appointed as the Chair of Interagency Autism Coordinating Committee (IACC). Prior to joining the NIH, Dr. Gordon served on the faculty of Columbia University’s Department of Psychiatry from 2014-2016, where he used his training in psychiatry and neuroscience to combine laboratory-based studies examining mouse models of human psychiatric illness with clinical practice and teaching in general psychiatry. His expertise in neurophysiology, or the study of patterns of electrical activity in the brain that underlie behavior, allowed him to investigate features of the neural circuitry that underlie mental health conditions such as schizophrenia, anxiety, and depression. He earned his B.A. degree in Biology from Washington University in St. Louis, and his M.D./Ph.D. from the University of California at San Francisco. He did his residency and fellowship in Psychiatry at Columbia University/NYS Psychiatric Institute. While teaching and conducting research at Columbia University, he also directed Neuroscience Education for Columbia’s Psychiatric Residency Training Program. Dr. Gordon has received several awards and grants for his research, including an IMHRO Rising Star Award, two NARSAD Young Investigator awards, an APA-GlaxoSmithKline Young Faculty award, and research grants from the National Institute of Mental Health. In his role as NIMH Director, Dr. Gordon oversees the lead federal agency for research on mental health disorders and conditions. With an annual budget of approximately $1.5 billion, NIMH supports more than 2,000 research grants and contracts at universities and other institutions across the country and overseas. In addition, the NIMH intramural research program supports approximately 300 scientists who work in laboratories at NIH. The mission of the NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery and cure.

As usual, above words do not represent any committee, agency candidate.
Idil – Autism Mom & Advocate

Alright – so, Ms. Adams who works at Minnesota Autism Center (MAC) in their Mankato location was charged by the Mankato police for failing to report child abuse to the authorities as required. The case is now done and she only got one year probation meaning as long as she does not violate the terms of the probation or repeat similar violation, her record will not reflect this crime and won’t even have this incident. I guess that is better than nothing. I think Katie Strong who is the licensed mental health professional there above Ms. Adams should’ve been charged as well.

There are many children in MAC centers that are sadly abused, restrained excessively and neglected, but no one has been able to do anything about it thus far. MAC is funded by the Minnesota Department of Human Services (DHS). Last year alone, MAC received $21,759,357 from DHS for ABA therapy. Yet, the state Medicaid agency whose responsibility is to assure individuals that are disabled, poor or elderly are safe keeps failing here.

DHS has no mechanism to assure our kids with ASD in MAC centers are safe and free from neglect and abuse. I mean zero, zilch and zap mechanism. This is soooo sad to me as an advocate but more importantly as an autism mom. Abuse is never ok for anyone, and so many of these kids can’t tell us what happened or defend themselves are clearly being abused at MAC centers, yet we have no way to protect them.

Shame on DHS for failing our kids with ASD yet again.

I know this is now becoming a broken record statement and I hate to use the race card every time, I just can’t help but think if this was a Somali child care center that was abusing or allowing abuse of children – what would DHS do? …think about it.

DHS would cry from every river to make sure those kids were protected. Yet when Ron Carey and Kathryn Marshall at MAC do it, DHS sleeps and pretends to be blind. I wonder why?

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

Idil – Autism Mom & Advocate

Alright – so, Minnesota had a primary election Tuesday and there were big winners and losers. Let’s just start with the biggest winner. Ilhan Omar from district 60B which has the largest Somalis in Minneapolis won beating a fellow Somali – Noor and Rep Kahn.

Rep Kahn represented this district which includes parts of the University of Minnesota for decades – over 40 years. I think that is before Ms. Omar was even born. Kahn has been no friend to us or autism families in this district and to those that are low income or minority autism families. She has always voted for bills and legislations that hurt our equal access goals and leveling autism therapy opportunities. In fact, she is a co-sponsor of a current bill – HF 3289 which wants unlimited and unchecked autism therapy coverage for wealthier autism families which will most likely make therapy providers not take Medicaid autistic kids and will eventually force DHS to decrease the reimbursement rate for Medicaid autism therapy coverage. I will explain more about this bill in a later post.

I for one am glad that Kahn lost, but the icing is that she lost to a woman of color. This district has one of the highest economic, health and education gaps in the state and even in the nation for people of color and Kahn has mostly ignored those constituents. So, Rep Kahn – good bye and good riddance.

Ilhan will face another Somali in November, Askar who is representing the Republican party. Think about this for a minute – two Somali Americans running in the same district. In other words, no matter who wins, our community will win. If that is not assimilation then I don’t know what is. Congrats to Ilhan and Askar and good luck to you both!

Another amazing loss was Rep. Mullery who also was no friend to minority autism families. He lost to a minority person as well. Really folks, does it get better than this. I hope this is a clear message and a lesson to those at the state capitol if you don’t represent all of your constituents – someone will come along and vote you out.

Couple of wins that I am not all that thrilled about are Sen. Hayden who usually ignores most of our community’s needs including autism and mostly marches to Sen. Bakk’s beat. And, Rep. Moran who is usually silent and hardly fights for our issues especially if God forbid we have different opinions or views. There is always next election.

A sad loss to the autism community was Sen. Sean Nienow who has been a true friend to us and our issues. I will miss him and hope he runs again next time. Sen. Nienow had this ability of speaking from the heart about legislations and relating it to his personal story. Even if he didn’t support a particular bill or legislation we wanted, he always explained his position so well that we could agree to disagree respectfully. There was never any bias or bull from him.

What does this all mean for autism? well in our community and those that live in district 60B, I think mostly this is good news. I am confident that Ilhan or Askar will truly represent everyone including autism families in a fair and transparent manner.

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

Idil – Autism Mom & Advocate

Alright – so, after what happened in North Miami few weeks ago, I think most autism parents if not all are uneasy about law enforcement. The one thing that would have prevented what happened in North Miami is clearly autism training for law enforcement. As I have said in previous posts, there are no nationwide, federal or state requirements for autism training in law enforcement. There lies the problem because unless it is required and part of  law enforcement’s training, autism will remain a mystery to most officers.

I have contacted many cities in Minnesota and some in the country to get a feel of their autism training. Most don’t have any, some have a little here and there under their crises management. Some have few minutes of drive-by where they cover all mental health and disabilities. Minnesota is one of those. There is not one city that can say we have the autism training down and understand what autism is, and how to de-escalate an autistic person in distress. Minnesota which has about 600 state troopers does not have a good thoughtful and comprehensive autism training. They have few minutes where they mention autism among other disabilities and mental health conditions. North Miami also did not have any autism training for their police and I don’t think Florida has any for their state highway patrol officers.

From what I understand, few of North Miami’s city council members held community meetings asking about autism training. It has been suggested that they will now provide such training. It is too bad something bad had to happen first. I am really impressed by city’s community meetings and how everyone voiced their opinion and take. I don’t think I have ever seen such venue in Minnesota. You know the land of 10,000 racial disparities.

The Miami Police Union President Mr. John Rivera sent me an email  stating they are open to autism training. Mr. Rivera also welcomes legislation requiring autism training which I think is always the best way to go. Personally, I prefer to advocate through legislation and policy change because that brings the best change. We  need a federal and Minn state legislation requiring autism training. As anyone knows, any state or federal legislation can take a while unless there is a legislator that is really interested is or is personally impacted. I think there is one legislator in Minn House, and I am blanking on his name now, but maybe I will try to start there then try to convince the house/senate chairs of public safety committees to support it. On the other hand, going to advocate at the Minnesota Capitol buildings is not all that fun – I must say. I remember when I advocated for the autism therapy legislation, I would take two Tylenol before and two Tylenol after I left there. We could advocate city to city, but that will take forever.

I am extremely disappointed in Autism Society of America’s inability to use the North Miami incident as a reason to push a federal legislation that would require law enforcement training. Equally disappointing is Autism Speaks’ position on this issue. One in 68 kids in the U.S have autism. These children will become teens and adults which means since there is no cure for autism, law enforcement may be called to help.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, in my last blog post, I wrote without checking all of the facts and reasons behind Rep Cornish’s remarks about the climate of our state and the nation’s racial disparity, in particular the relationship or lack of relationship between the police and minority communities.

Now, in retrospect – this is not an area that I understand or follow all that well. Only what I see in the news here and there. Of course, as a Black woman, it bothers me as it does many others what I see on the news. At any rate, I heard back from many legislators in the state, many of whom were mad. Some said “what is my problem since they have helped me and our community with autism related legislations”. Some said “what solutions would  I suggest”. Some said ” I should stay focused on what I know and not get involved in every issue”. I agree with everyone that contacted me, more importantly I appreciate every legislator that has helped us write, push and vote in so many autism bills and legislations that have passed in Minnesota for the past few years. I also thank and appreciate every congressman/woman/staff and federal personnel that also helped pushed autism issues at the federal level.

Mostly, I want to thank Rep. Cornish for making me understand what he meant. I can understand where he is coming from. I understand that BCA is under DPS which is under Gov. Dayton and how one can assume their work could be less objective. I can also understand where Gov. Dayton was coming from. Our state sadly had some of the worst racial disparities in the country, and while I don’t read minds – Gov. Dayton and Commissioner of DPS, Dohman’s body language seemed as though they really care and what has happened bothers them.

Below is what Rep. Cornish said to me.

I think I will take folks advice and stay out of any issues outside of autism.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, if you have a child with autism spectrum disorder (ASD) then you probably heard when Disney changed their policy of following American’s with Disabilities Act (ADA). Disney used to have a guest pass card for individuals with disabilities including ASD. Often many kiddos with ASD can’t tolerate waiting in line or get overwhelmed by the long lines at Disney. The Guest Pass card helped ease some of the anxiety for these kiddos.

Then some heartless vacationers that did not have any disability started abusing this and Disney took a knee-jerk action and eliminated the guest pass card. Shortly after several autism families sued Disney for violating the ADA.

Then back in April (autism month mind you) some judge whose children probably don’t have a disability took Disney’s side and stated they did not violate the ADA. Then last month the Civil Rights Commission finds Disney did discriminate against individuals with disabilities in particular autism.

What does this all mean. From someone who sued an ABA provider agency for discrimination – (Lovaas who I think are racist pigs), it all depends on who the judge is and how they interpret the law which is often based on their views and perspective.

How can one area see discrimination and another does not? It is in the eyes of the beholder. The law is never clear – it is how one interprets. Sadly, too often courts side with big agencies and big corporations.

What does this mean and how do we change it? Well – in my humble opinion, it all comes down to our votes. I know you are thinking, now what now. Think about it. Who the heck appoints those judges. The governor for state judges and the president for federal judges and who the heck votes for governors and presidents. We the people do. Sadly, but not surprisingly, minority communities never use their voting power as a negotiating tool like other communities and women do. Please vote wisely and hold politicians accountable who appoint these judges. Sometimes judges run for elections and no one in our communities ever  follows those elections. Being reactive accomplishes nothing, we must be proactive and use our votes to change our lives for the better.

Click here and here for the results of these cases against Disney by ASD families.

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

Idil – Somali Autism Mom & Minority Advocate