Monthly Archives: October 2018

Comments Off on Sen. Abeler’s First Picks For his Minnesota Autism Council Working Group Are Three Whites – No Minorities?

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… 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

Category: Autism Policy

Comments Off on Minnesota State Legislator – Sen. Abeler is appointing Minnesota Autism Council Working Group

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.

Additionally, a group of autism folks met with Abeler back on April 5th and there was not even one single Somali person. How do you like them apples? Lovely – talking about autism in Minnesota and not invite one Somali autism parent. That is Minnesota nice for you!
I really hope Abeler does not pick Morgan Freeman – Driving Ms. Daisy, Yes ma’am. We need fearless folks who will speak candidly and advocate for their child and their community.

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 

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!

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


Category: Autism Policy

Comments Off on Dear IACC – Please Do Not Silence Autism Parents or Any Public Person

Alright – so, IACC is the Federal Interagency Coordinating Committee where all things autism at the federal level go through. There are public members and members from government agencies that have anything to do with autism. I was lucky enough to have been a member in this committee during the last cycle and was appointed by previous U.S Department of Health and Human Services – Kathleen Sebelius.

What I liked about this committee was that even though there were so many diverse and different voices which sometimes resulted heated conversations – folks never took it personally. I remember there would be stark differences between members from both the federal government and public members but at the end of the meeting, they would share a cab back to the airport or have lunch and not even discuss any meeting topics. Everyone came to do their job in their role and spoke for whoever they represented. That was simply amazing.

One of my favorite part was public comments. This is when anyone from the public would make oral comments or send written comments to the committee. Often there were autism parents who would travel from various states to make their case, speak their mind, speak for their children and tell us what they thought of us and what IACC was doing or not doing. This was often emotional as many parents spoke about their children’s challenges and their own fears. Dr. Insel who was the chair of The National Institute of Mental Health (NIMH) was also the chair of IACC. There will never be another person like him. Sadly he left NIMH and IACC. Dr. Insel never took anything the parents said personally, he always listened with an empathetic ear and sympathetic mind. He gave everyone an equal chance to speak. Often there were the same parents who lived close to Washington DC that would come, and he did not mind that nor did anyone else. Whatever decision IACC made was voted publicly and discussed openly.

I can understand not every autism parent or family member can come or afford to speak in this meeting which is why parents who lived close came often and that was OK. My first time at IACC, I was also a parent who spoke during the public comment time and after I spoke – Dr. Insel asked the committee what they were going to do about autism and the Somali community. This was truly an amazing moment as we all now know given how much work has been done about autism and Somali children. Yes, I know we still have a lot to do but the point is parents spoke candidly and openly without being told they could only speak once. I  recently read a blog about one of my favorite autism moms – Katie Wright, daughter of Autism Speaks founders and a blogger for Age of Autism. At first, I thought maybe this was just a mistake then I looked into it and sure enough it is true. IACC only wants to hear from each parent once a year. Seriously. Autism does not happen once a year – it is 24 hours a day, 7 days a week and 365 days a year and we can only speak one time in the whole year. Come on now IACC? You can’t be serious.

Autism parents cannot and shall not be silenced by IACC or anyone for that matter. If we don’t speak for our children who will? I am extremely disappointed in this decision and quite frankly surprised. IACC is governed and funded with federal public funds. As such, public comments from parents should be important and validated even if it is the same message from the same parents. IACC members – please take a look at this horrible decision and reverse it. As members – you must understand parents are frustrated and tired. We are not looking to be liked or be friends with any IACC member. We are simply looking for real research that answers our autism questions and concerns. You don’t have to like what we are saying or even agree with it but you do have to listen to it and respect it. As an autism mom and a previous member of this committee, I am deeply hurt and disappointed in this decision and respectfully ask that this one time per year per person policy is removed.

IACC’s public comment states:

A limited number of slots for oral comment are available, and in order to ensure that as many different individuals are able to present throughout the year as possible, any given individual only will be permitted to present oral comments once per calendar year (2018).

Imagine if I was only allowed to speak about autism and Somali children once per year, imagine if parents who kept telling IACC about the connection between autism and GI or immune issues only spoke once per year – just imagine how slow these issues would’ve come to light. Please let the public speak their mind and tell you what is happening in their lives. That is the very least IACC members can do – listen and respect different views of autism.

I just sent below written public comment to NIMH & IACC Chair and Members.

Dear Mr. Chair and Members:

Please let autism parents and the public speak as many times as they can or possible and do not limit them to once per year. As autism parents, we have to repeat our message for others to hear us, it is the least we can do. Please do not silence us. Autism has already silenced so many of our children and I don’t think IACC should silence or limit any parent’s ability to speak for their child.
Thanks much in advance and I hope you reconsider this horrible decision.

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

Idil – Autism Mom