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Alright – so, if you know me or follow my advocacy then you understand I think there are two ways to fight. One is through advocacy and inclusion and the other is via lawsuits. I have written about this which has also affected me. My son loves Disney but after they changed their services for people with disabilities including autism – it has been very hard to visit Disney. Children with autism often don’t understand the concept of waiting which is why so many ABA programs start with a wait target. Usually it is waiting for seconds or maybe minutes at a time. However, Disney’s new rule says – the wait for this line is an hour and half, we will give you a pass to use after the ninety minutes are over. I know what now? If my child can wait for 90 minutes for something, heck anything – then why are we even here. We could just stand and wait in the regular line with people without disabilities. This is similar if you told someone with no legs to be in a running competition with someone who has legs and the only accommodation you made was give them a wheelchair. The one with legs will still win because a wheelchair can’t compete fairly in this situation. Maybe this is not a good example but the point is the ability to understand waiting concept is one of the characteristics for autism and to make them wait for a ride when they can’t even comprehend the concept waiting is just cruel.

At any rate, there have been some amazing autism parents in various states such as California and Florida who sued Disney and some judge took on the side of Disney but some the parents appealed and there is a good news on this.  Also, if you want to keep calling Disney as I do and complain about their proper accommodation for people with disabilities particularly those with developmental disability, you can call 8185601000 and press one. You can tell them your experience with your child. The more of us call – the better.

Here and here are previous blogs on this issue. I am a firm believer that individuals with autism must be part of their communities including going on vacations and enjoying life as any other human being. I also believe it is right and fair to accommodate them when necessary and needed because of their disability. No one is perfect, but individuals with autism are perfect in an imperfect world.

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

Idil – Autism Mom

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

Dear Autism Teacher/Therapist:

First, let me begin by explaining what autism is. It is a developmental disorder that affects a child’s ability to communicate, socialize appropriately and self-regulate their behavior. Many individuals with autism also have sensory processing disorder. This means they are not able to regulate their sensory needs and may be sensory seeker or sensory avoider. Two of the main areas autism affects are communication and behavior. Now – if the child is young probably younger than ten years old, it is easy to handle their inappropriate behaviors. However, when they get older as all children do, it can become hard to physically handle them. This is when your education and experience kicks in. Actually, even when the kids are young, they should’ve been taught how to self-regulate their behavior. One of the best ways is understanding autism and behavior. I am not saying – you need to go to school and learn behavior analysis but if you chose this field, you should at least understand the basic concepts of autism, communication and behavior.

Here are some simple steps to think about:

1. Jamie from Behave Your Best has an amazing video that explains light switch on and light switch off. This means when the child is displaying any inappropriate behavior is not the best time for the teacher/therapist to keep talking to the child because their brain is not listening and they are in flight or flee mode.

2. Meet their sensory needs proactively and not wait until they have the need.

3. Keep learning and reading about autism, communication and behaviors. Relias Learning has lots of online/webinars that are pretty good.

4. Be humble if you don’t understand something or need help. Don’t be afraid to ask parents for help – they will most likely know more than you when it comes to their child and autism.

5. Don’t label informed and educated parents “difficult”. I once watched Relias Learning video by Dr. Gerhardt and he said one of my fav lines of all time “don’t be afraid of a difficult autism parent, they know more than you and expect a lot from you”.

I understand this is not an easy job, and I hope that those that have the passion and heart do this. Every-time we leave our children with you in school or in a therapy center, we leave you with our heart. Treat our children the way you would want your child to be treated. Be kind, be understanding, learn a lot, analyze situations and don’t use one size fits all, and above all care for our kids.

While this is hopefully an isolated incident, the fact that it is even one incident is heart-breaking. Autism teachers and autism therapists must have some kind of humanity to teach our children.

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

Idil – Autism Mom

Alright – so, why do non-minority agencies such as Pacer, Family Voices, Arc and Autism Society of Minnesota take all of the state and federal advocacy funding? Just because they hire one person from each minority community does not mean communities of color are served well. One person can not serve all of us.

For example, PACER which is supposed to be parent advocate agency takes all of the educational advocacy funding from both the state and the federal government. Yes, it has one Somali advocate – Hassan who is simply fantastic but given the sheer number of Somali families whose children have autism, he can’t serve all of us. Not to mention other Somali families whose children have other disabilities.

Arc, Family Voices and Autism Soc of Minn take all of the funding from both state and federal government and is supposed to help all parents in Minnesota who may have complaints or concerns with almost every agency including the counties, the Medicaid agency, etc. While Arc has one Somali – Family Voices and Autism Soc of Minn do not. Even then it would not be enough to serve our community and all of the other communities of color. The question then is why do they need to take all of the funding? Why aren’t there minority advocacy agencies that can help their own communities? I think this needs to stop and communities of color must advocate for their own communities. Give me a fish and you fed me for one day vs teach me how to fish and you fed me for life.

Furthermore, if you follow these mainstream advocacy agencies – they are mostly controlled by the same small group of Minnesotans. For example, the current chair of Autism Soc of Minn used to be an Arc board member. The same goes for all of the leaders within these small self-serving advocacy agencies. They also often don’t have adequate diversity in their leadership which adds to the problem. The new executive director of Autism Soc of Minn before she got the job had zero, zilch – nada experience running a non-profit or an autism agency. Yet, she was nurtured, sent to trainings and conferences. If a person of color applied for that job – they would’ve said, wait for it…. drum roll please…..”we would love to hire you but you don’t have the qualifications the job requires”.

I say it is time for us to speak for ourselves, to advocate for ourselves, to stand up for ourselves and to stop allowing others do for us what we are clearly capable of. So how do we do this. Well – let’s explore where this funding comes from.

Clearly, I can’t be the Jackie of all trades but few years ago – I advocated at Health Resources & Services Administration (HRSA). This is the federal agency that gives a chunk of the federal funding to state disability advocacy agencies. They also fund dozens of university LEND programs and state health department’s child and maternal health divisions, which include children with special health care needs. I had one simple question, why are these mainstream agencies taking all of the federal funding for advocacy and how are they reaching out to minority communities particularly parents with children on the autism spectrum disorder. After many months of negotiating and advocating – I made a small dent but not enough to move the needle towards equality. For example, the Univ of Minn created a diverse website in their LEND program, had to take more students of color into their LEND program, and hired one Somali in their ICI dept. The health dept or the do nothing state agency hired one Somali person to help Somali autism families, and had to share the autism grant they got with actual minority owned agencies. Sadly that was it. Nothing really changed regarding Pacer, Arc, Family Voices and Autism Soc of Minn.

I think it is time to go back to HRSA and to the state education department and say we want to be at the table and advocate for our own community. There are great Somali owned agencies that have the capacity to do this such as the Somali American Parent Association (SAPA). So why should Pacer say they will help us when we can easily go to SAPA and be treated fairly, with respect and dignity.

Below are some of my simple questions and what HRSA response was:

From Idil:  “Why can’t Pacer do similar workshops for communities of color including Somalis and give the same information they seem to give to Caucasian families via webinar?” 

PACER’s Family to Family Health Information Center (F2F HIC) have initiated many projects to address underserved populations.  PACER’s F2F HIC have 4 multicultural staff that are parents of CYSHCN.  Hassan Samantar (PACER staff person) has presented at many workshops for Somali families in the following communities in the past 12 months:  St. Paul, Minneapolis, Apple Valley, Burnsville Savage, St. Cloud and Bloomington.  In addition PACER has utilized many different media outlets that cater to diverse communities including radio, television and newspaper.  And PACER advocates who serve multicultural families collaborate as partners with other multi-cultural organizations.  The PACER advocates conduct home visits with underserved populations and incorporate health information as needed by the family visited.  PACER advocates provide families during their home visits information on enrollment in MA, accessing waivers or support grants, understanding how to work with county case managers, and finding and navigating community based services.  The home visits may also include accompanying families to appointments with health care providers.    

Best regards,

Leticia

Leticia Manning, MPH

Lieutenant, United States Public Health Service

Maternal and Child Health Bureau

Division of Services for Children with Special Health Needs

5600 Fishers Lane

Rockville, Maryland 20857

Dear Idil,

I am the new project officer for the Pacer Center, Inc. (a Family to Family Health Information Center grantee) and I will try to address your concerns to the best of my ability.

HRSA is committed to ensuring that underserved populations have access to health care services. This includes ensuring that minority populations have access to appropriate services. While we understand there are needs in a variety of populations, we also recognize that our grantees have limited resources to address huge needs and therefore must target their limited resources. As part of the grant application process and annual reporting, HRSA requires that our grantees conduct a community assessment to identify populations in that community that  are most in need of services and the grantee target those populations with their work. To further their reach in the community, grantees are also required to partner with state, local agencies, and community organizations. Idil, as a community partner we appreciate that you are sharing any additional resources or partners that PACER could benefit from working with.

Then was the below response from Laura Kavanagh, MPP Deputy Associate Administrator, Maternal and Child Health Bureau at HRSA regarding the Minn Dept of Health:

Minnesota (MN) Department of Health

Grant Number: H6MMC27440

Improving Awareness of the Signs and Symptoms of autism spectrum disorder (ASD) and related disabilities (DDs) in culturally diverse communities

The grantee has translated, customized, and distributed a number of Centers for Disease Control and Prevention (CDC) Learn the Signs, Act Early materials into different languages. Thus far, they have translated into both the Hmong language for their large Southeast Asian Hmong community and the Somali language for their East African Somali community. Along with their community partners, they have printed 6,000 Milestone Moments Brochures and 3,000 First Tooth Fliers in Hmong, which are ready for distribution to local communities. They also have continued a focused outreach to the Somali community. To date, the milestone booklet (Somali version) has been downloaded 8,756 times and 3,000 translated developmental brochures were distributed to individual Somali parents and families. They recently printed another 7,000 Somali Milestone Moments brochures and 250 Community reports and have been taking orders for these materials. Additionally, regarding Latino outreach, they have ordered (over 300) Act Early materials and Amazing Me books. These materials will be distributed at upcoming community events. 

Act Early Cultural Liasions and Delegates: Improving Awareness Among Culturally Diverse Communities

The project has identified key cultural liaisons/community leaders within culturally and linguistically diverse communities who will serve as community leaders and trainers of Act Early Delegates. The Act Early Delegates will then conduct outreach within their cultural communities on developmental monitoring, early signs of ASD, the importance of early screening, and the “Learn the Signs. Act Early” message. Additionally, they also plan to conduct on site Act Early trainings, phone meetings, and webinars to build ongoing capacity and skills within the Act Early Delegate network. To date, the grantee has successfully recruited and trained five cultural liaisons/community leaders from diverse communities (Hmong, Somali, and Latino) who are recruiting Act Early Delegates within their cultural communities.

Training Providers: Working with Culturally Diverse Communities:

The grantee completed a series of training activities focused on services for culturally and linguistically diverse communities. The trainings are highlighted below:            

• MN’s Health Care Home Certification 
• In November 2014, approximately 50 primary care providers, care coordinators and related service providers received training around ASD/DD screening, identification and connection to resources. The trainings also included a section on working with families from diverse cultures and was part of a larger training related to MN’s Health Care Home Certification.
• MN Act Early Training Webinar Series

1. Webinar: “Building connections with Somali families: Culturally competent approaches to child development, early signs of ASD, and early screening.”
2. Webinar: (for outreach to professionals) “Culturally Competent Approaches to Working with Somali Families around Child Development, Early Signs of ASD, and Early Screening”.
3. Webinar (for outreach to professionals) “Culturally Competent Approaches to Working with Hmong Families around development”. The event was well received and has been viewed by approximately 300 individuals and groups. Interest continues in the webinar.
4. Ongoing Promotion of Archived Webinar: “Building Connections with Hmong Families: Culturally Competent Approaches to Child Development Improving early identification, diagnosis, and entry into services in underserved communities
5. The grantee is starting to implement activities that focus on decreasing the average age of identification, diagnosis and entry into service for children with ASD/DD with two metro area community health boards and five rural community health boards. The project activities for coordination of screening and follow-up will include:

1. At a minimum, provide enrolled families two Ages & Stages Questionnaires, Third Edition (ASQ-3) intervals per year and one Ages & Stages Questionnaires: Social Emotional (ASQ: SE) interval per year until the child reaches 36 months of age;
2. Implement and offer families access to the ASQ-3 and ASQ: SE on-line screening system. Families not able to use the on-line system will continue to receive screening instruments via U.S. Mail;
3. Implement consistent follow-up protocols for all developmental and social-emotional screens (ASQ-3 and ASQ:SE) where a beyond-the-cutoff score or concern is identified for children ages birth to 36 months. Periodic follow up will continue until medical evaluation/assessment is complete and families are connected to services including insurance, community-based waiver programs, Help Me Grow Infant and Toddler Services (Part C) early intervention services, specialty care, and parent to parent support;
4. Collect data to indicate the age of screening, referral and connection to services, and diagnosis of ASD or other developmental disability;
5. Collaborate with education, human services, health care, community organizations, families, and children on a routine basis in their local communities;
6. Connect to primary care providers, care coordinators and ASD specialty providers in their jurisdictions to discuss screening practices to maximize resources;
7. Share lessons learned throughout the grant period; and
8. Use data collected to provide guidance on system barriers around referrals and communication between primary care, public health, education and specialty care. The grantee plans to track timeliness of entry into diagnostics and early intervention services in several areas of the state. Local public health will be able to document the realities in the system so that improvements can be made in policy.

I am not sure if any of these folks are still at HRSA – I know that Diana D retired (how lovely she was), but irrespective of who is there now, change must come once and for all. This is the time for action for our community to stand up for our kiddos with autism and be part of the solution. We CAN speak and advocate for ourselves and do not need Pacer and others to do it. SAPA, Isuroon, etc. CAN do it.

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

Idil – Autism Mom

Alright – so, the autism & developmental disabilities monitoring (ADDM) report came out last week stating that nationwide autism is now at 1 in 59. This means every 59 children in the US – one has autism. The current sites of the ADDM are Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin. The 11 communities surveyed in this report represent about 8 percent of 8-year-old children in the United States. It looked at about 300,000 children who were eight years old in those states within specific areas.

As you can see Minnesota is now among the states who count autism data for the first time in history mainly due to autism in the Somali community issues that we have raised for years now. Plus, the U of MN was kind enough to apply for this grant whereas MDH or the do nothing state health agency refused.

Well – so what does this data mean for autism in Minnesota and in nationwide? Nothing new here – we all knew the numbers would be higher. What was interesting was the number of minority children who were not Somalis being diagnosed increased. Some said it is due to awareness, maybe. Some said it is due to autism is hitting more minority kids now – maybe. Even though, this data specifically does not mention Somalis in Minnesota – some in the community have said it is now 1 in 26 for American children born to Somali parents in Mpls and St. Paul. Some in our community got angry and wanted what the state was going to do about this. Some even have called me asking what I was going to do about it. My response – nothing.

My goal and those that I advocated with have been to raise awareness of autism in our children. I think we did that fairly well. The next step is not ask what the state is going to do which is nothing especially the state health dept. Instead what new autism parents need to do is the following in my humble little opinion.

Gather specific data and numbers from U of MN especially Dr. Headache – sorry I meant Dr. Amy Hewitt who I saw mentioned Kristin and Jennifer from the U but not the one Somali person that also worked on the ADDM numbers – how lovely and how normal.

Then find an autism researcher who will research into why it is high in us and why it is silencing our kids.

Find where autism grants come from at the federal level – NIH, NIMH, NIEH, CDC, HRSA, etc. and see if they can allocate funding for Somali autism and causation research.

Contact your local legislators particularly Abdi Warsame and Ilhan Omar and see if they can allocate some kind of research funding for this.

Finally, make sure whatever you do there is language that says Somalis will be involved in it as the saying goes nothing about us without us.

Good luck! and always asking media coverage is helpful.

My favorite blog about the new ADDM numbers was this. Matt who was a fellow IACC member and an autism parent always writes about autism from a thoughtful perspective.

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

Idil – Autism Mom

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