To sum it up – it said:

Somali – Autism is 1 in 32

White – Autism is 1 in 36

Non Somali Black – Autism is 1 in 62

Hispanic – Autism is 1 in 80

Age of diagnoses – 5 years old which is 3 years late than recommended age for everyone and Somalis have the highest though not by much.

And, more importantly Somali kids are on the SEVERE end of the spectrum. 

Wow, cry then more cry then more crying…..

You know how you sometimes know something, but no one believes you. That was our life for the past 5 years. The first time, I saw Somali autism mom was in Mpls school district in 2008 after I was invited by Anne Harrington (yes – we go a long way, Anne & I).

From that day on – I had stayed on course by calling, asking, begging, harassing and more begging everyone that would listen or sometimes not listen. 

I can remember the first person I called was Sara Chute from Minnesota Department of Health’s refugee dept and probably left her over 10 voice messages and never received a call back. But, I knew I could not give up because those Somali moms that were in Mpls looked like me, talked like me, were in pain like me and were frustrated by autism like me. Their children were just like my son. I felt a sense of obligation to help them. I felt a responsibility to help my son. 

How could I give up and still be a fellow Somali. How could I give up and be a good mom. I just had to keep going and keep asking by any means necessary. I was so surprised and shocked to find out not one single state agency knew or even cared at that time. But, this just fueled my energy and drive to educate them, to show them, to scream at them, to beg them – whatever it took for them to see what I see.

And, so after 5 years of we don’t think to – well we think, but we are not sure to say on Monday Dec 16th, 2013 at 10:30am – YES AUTISM IS HIGHER IN OUR KIDS AND IT IS MORE SEVERE TO THE TUNE OF 100%…..WOW.

You can’t imagine that feeling. I felt light, yet full. I cried with joy even though the news was bad. 

I felt good, yet sad. I felt mad – yet relaxed. I had so many emotional feelings that I don’t think I ever felt in my life – ever. 

This research was so personal to me. I traveled miles, called hours, begged days, cried months, asked years and screamed forever, for others to see what we see in our kids and in our homes. 

One of my friend reporters said to me, why are you glad about sad news? I told him – you can’t imagine to finally have a stamp of approval, validation, affirmation and confirmation of what we have seen in our community for years. It is like someone telling you there is no snow on the ground, but you know there is because you are standing on it. But they tell you they are the weather people, they are the experts, and there is no snow. So, you doubt yourself, you stand outside to touch the snow and you touch it. Yet, you doubt yourself because the weather expert told you there was no snow.

That has been my life with autism since that day in 2008. None of the health experts wanted to see what we see and feel. It is often said autism parents are in denial, that was nothing in comparison to how in denial MN state health, education and services officials were. 

But on Monday Dec 16, 2013 at 10:30am – we proved them wrong and proved ourselves right. Sometimes the meteorologist is simply wrong about the weather. 

Ever since then, I rec’d lots of praises, calls and emails thanking me that I stayed on track. Some said I should start writing a journal of my journey. Some asked how I did it. All I can say is when you see snow on the ground then you see snow on the ground. Others asked me what is next. I have no idea, but I do know that I am bone tired. I will probably chill for a while and not advocate as this takes a toll emotionally, physically and mentally. 

No one should think autism advocacy is a walk in the park. It is hard, confusing, complex and really exhausting. 

I thank everyone especially Somali Autism Parents, Somali community leaders, so many elected officials, policy makers, state and federal agency leaders and media for sticking with me through the years. I also really want to thank Dr. Amy Hewitt whom I had many many many hardcore emotional fights along the way even to the point whereby CDC/NIH/AS folks came to Mpls to mediate between us which was really intense. Dr. Hewitt could have just reported the numbers, but she added the severity and that is the best part of this study. Why is it so severe in our children? WHY?????

If you are a researcher – this is the seed to start. What is it about our gene make up that when added to MN environment is causing, not just autism – but severe autism.

May God Bless all kids/adults with ASD & their families!

Above words are my opinion and do not reflect any committee.

My fav is WCCO by News Director Mike Caputa (Mike believed me when no one else did and did the first Somali autism story – ever) Thanks Mike!

Idil – Somali Autism Mom & Minority Advocate

At any rate, we got him for at least another year until hopefully Minnesotans will not make the same mistake again by electing someone else. One can argue was Emmer better in terms of minority outreach and I would say no. Emmer completely ignored minorities in his team and just assumed all voters were white. On the other, Dayton fed us bunch of useless, meaningless and empty campaign words that never got off the ground. 

I guess then the question is do we want a governor that ignores a large junk of voters or one that only uses them to get votes. Well – you decide next year, depending who runs against Dayton. When will politicians learn empty words or ignoring minority voters don’t work. Inclusion works by respecting all voters by addressing their issues. 

At any rate, update on the disparity is apparently MNSure agency head which we all know by now lacks any face of color in their leadership has taken a tropical vacation while many here including many autism parents with MCHA insurance lost coverage. How nice and typical of Dayton administration.

Now, when the Maryland head of their insurance exchange took similar vacation, she left under pressure. Dayton will probably promote MNSure’s vacationing leader during crises because stand by your staff at the expense of your voters is his cup of tea. Some good news here is all of those minority agencies that MNSure initially snubbed sort of like how the Oscors snub many minority actors. Well, it seems some of them were awarded small grants to do outreach into communities of color. See that here:

Education gap update is looking a little better according to recent numbers – MN is still at the bottom for minorities while white kids are at the top near MA, but we are not the worst anymore. YAY! – not really.

Autism Disparity is also a little better, it seems MDH has hired two Somali autism outreach workers to help with autism and immunization. They have not really done anything significant yet, but time will tell. This is still peanuts since Dayton promised he will ask his MDH administration to look at Somalis and Autism through research. We are still waiting for that and I am sure he will repeat that tired line in 2014 elections. A bonus note, when we asked Sen Franken to write a letter to Gov Dayton urging him to keep his autism promise, Franken told us….. wait for it…..Gov Dayton is doing a good job. What? I know. Sen Franken has to go back to SNL.

As usual, above words are my own and do not reflect any committee.

Thanks!

Idil – Somali Autism Mom & Minority Advocate

As a result and to make a long, hard, difficult journey & story short – we were able to advocate from the Federal government (NIMH, CDC, NIEH, Office of Minority Health at NIH) and Autism Speaks for over $400,000 to do a Somali Surveillance Study in 2010. Well – the results of that study done by University of Minnesota with help from CDC, NIEH and Autism Speaks is to be released on Monday Dec 16, 2013 at 10:30am at African Development Center 1931 S 5th Street Mpls. (it is our friend’s business the Late Hussein Samatar who was instrumental in assuring ICI at UMN did not do business as usual and exclude minorities) 

To give a little history this study was second step to Minnesota department of health’s study back in 2009 which said autism cases were higher among pre-school Somali born children in Minneapolis.

It is suppose to re-look that by using the ADDM surveillance system and either confirm or not the 2009 MDH study.

I have been told I would be OK with it by the Principal investigator of the study Dr. Hewitt at University of Minnesota which to me sounds like not good news of autism is high and not bad news of we found nothing. 

My guess is this;

CDC and Univ of Minnesota will say on Monday – Autism is NOT higher among Somali American children born in Minneapolis, but it appears to be on the severe and/or minimally verbal side. They will also say – most of these children are not getting early intervention and/or medical diagnoses on time. On the other hand, I could be wrong and they might say – YES Autism is HIGH in our community. That is for sure what I hope for because I can see autism in every family and in terms of disparity, we already know that per all of the great work done by Dr. Mandell and others. 

I mean we don’t need to ask Jack and Jill if autism disparity exist in minority children for late diagnoses, less intervention and services. I see that everyday for so many families.

I honestly did not think I would be this emotional about this study, but I am. I feel a sense of relief it is done. By the same token, if it proves or disproves nothing then we are back to where we started back in 2008. Then the question will be how did ICI at UMN count and engage with families to get the best accurate numbers.

I guess few more days until we all know what the results are and what happens next. These results took twice as long, it was suppose to be done by summer 2012 and it is now winter 2013. I am not sure why it took so long, perhaps it is the fact that ICI at UMN was sort of clueless at the beginning and has never done an autism surveillance study. In fact, no one in MN has ever done it or thought they could get funding for it. Remember our state health dept has always refused to do a population autism count and has never applied for CDC’s ADDM Surveillance grant. Their reasoning we are not qualified, that is one agency that frustrates me even more than ICI at UMN.

Whatever the result – and don’t get me wrong I rather get results that state what we see with our eyes in our community, I am very grateful and can not thank enough so many people that were responsible for this study, not just financing but really giving their time and expertise. 

Dr. Insel at NIMH who is the reason this study was funded because he asked IACC members to coordinate and look into our concerns. Dr. Daniels at NIMH – not enough nice words to describe her, I learn from her everyday. I don’t know how she does so much with such calmness and humility. 

Dr. Allsopp at CDC whom I am so fond of and has been the backbone of our advocacy. 

Dr. Wiggins whom I admire and respect wholeheartedly and is probably one of the nicest and sincere researchers at CDC.

Dr. Dawson whom I also like and respect and was the reason Autism Speaks contributed $100,000 to this study along with Michael Rosanoff and previous AS President Mark R. 

Dr. Lawler at NIEH who is so approachable and knowledgeable.

Finally, Dr. Punyko an epidemiologist at MDH. I think she is probably one of the best researchers MN has and probably in the country. Dr. Punyko is so detailed, yet so human – what a rare combination. Oh & my fav – she does not crave attention like Hewitt does, Punyko just does her job behind the scenes and calls it a day. 

Regarding the lead researcher Dr. Hewitt – No love lost there & I can’t say we stared on the right foot. I think there are still lots of issues to work through since we fought hard and long to even get a Somali hired in a Somali autism study that was advocated by Somali autism parents, imagine the level of arrogance in that. Diversity and inclusion should NOT be this hard in every corner here, but it is and it is emotionally exhausting. My final assessment of Hewitt will be on how the study is released, what exactly it says and what it accomplishes, as they say it is in the fine print, or the proof is in the pudding.

Here are some stories done on this previously:

As usual, above words are my own and do not reflect any committee.

Thanks!

Idil – Somali Autism Mom & Minority Advocate

But we have some good news to report now. MN DHS after years of asking and begging to make sure low income families get equal autism therapies such as ABA – it has finally happened.

DHS has released a notice titled Pathways to ASD Services, click here to see that.

Basically, this means if you are low income, have a child with ASD, you are automatically enrolled into Managed Care Health Plans such as UCare, Health Partners, Medica, etc, which did not cover ABA services now has to. ABA is called in MN Skills Training until the new benefit is approved by CMS (Center for Medicaid and Medicare Services)

Here is background information on this;

First, Managed care plans should be covering whatever the state is approved for, but for those families on fee for service Medicaid which DHS managed were the only ones getting ABA aka skills training while managed care kids were denied. 

Usually fee for services kids are upper/middle income families who have a child with a disability, even though those with managed care could have asked to be switched, but did not because no one usually told them they could do that.

Thus, disparity for low income autism kids who are disproportionately on managed care.

But now thanks so many people and persistent advocacy – MN DHS states Medicaid is Medicaid is Medicaid regardless of who is managing it and services should be the same for all on Medicaid.

So, if your child has ASD and has been denied skills training aka ABA – please let the provider know of this new change and call your health plan. If you are still having problems, there are numbers to contact for help.

I like to thank Amy Dawson first who sued managed care on behalf of a little boy with ASD who was denied ABA therapy and won. See that story here. She is the one that brought this to our attention back in 2010 and ever since then we had a laser like focus to change policy so that services for ASD kids are equal. 

One person that I really give huge thanks to is Maura Lerner from Mpls Star Tribune who covered this story in a very detailed manner and kept asking DHS why the inequality which I think tilted the conversation. I along with so many autism families are very grateful to Maura and her fantastic writings. Also, thanks to Loren, Edwall, Wagner, Harrington and everyone at DHS that has tolerated our endless asking. It was a long journey, but equality is always worth it in my humble little opinion.

Finally, I thank current DHS leadership Jesson, Barry and Dr. Sulik from previous DHS administration who started this for us. The good news is that our state is no longer practicing double standard ASD services between the haves and the have-nots. How awesome is that!

As usual, above words are my own and do not reflect any committee.

Thanks!

Idil – Somali Autism Mom & Minority Advocate

That is right, for those of us that have children with autism – everything has to be routine and even seasonal changes at the store, time of day or how crowded it is affects our kids. 

But we all learn to make lemonade and try not to look for strawberry juice from lemons – as the saying goes. 

As a result of so many changes in how our kids learn, when they get diagnosed, who diagnoses them school vs medical, what services they get or not all depend on where you live, your income, how persistent you are and your race. That is right – your race. Black and Latino kids get the short end of every stick from late diagnoses to less services. 

Then comes the question – why is that and who the heck represent you because services, education and resources policies come from policy makers who are usually the elected officials that we elected into office and into power.

I recently saw this email from Autism Action Network which is a national autism grassroots movement that usually fights and advocates for alternative medicine and believes autism is caused by environmental factors. 

They said something that caught my eye and below is that email. 

This is so true and we all need to know who represents us and how or what they are doing about Autism because if not us then who?

I urge any parent, relative, friend, etc to support children and adults with autism across the spectrum with more targeted services, resources and research by contacting their elected officials and keep contacting them persistently and consistently.

Thanks!

Idil – Somali Autism Mom & Minority Advocate

IACC will finalize and hopefully vote on the final national autism strategic plan which is due to Congress and to Sec Sebelius by end of the year. All of the information that will end up in the plan has been discussed and voted on publicly per Federal open meeting guidelines. 

If you want to listen below is the call information. It is listen only line for the public. The public can also send written comments to OARC (Office of Autism Research Coordination). Please remember your comments are part of the public record at IACC within NIH.

As usual, above words are my own and do not reflect IACC or any committee.

Please join us for an IACC Full Committee Conference Call that will take place on Friday, December 13, 2013 from 12:00 p.m. to 1:30 p.m. ET.

 

Agenda: The committee will discuss and finalize the 2013 IACC Strategic Plan Update.

 

Written Public Comments:

Written public comments may be submitted to:

 

Office of Autism Research Coordination

National Institute of Mental Health, NIH

6001 Executive Boulevard, NSC, Room 6182A

Rockville, Maryland 20852

E-mail: IACCPublicInquiries@mail.nih.gov

 

By 5:00 p.m. Eastern on Tuesday, December 10, 2013.

 

Remote Access:

The meeting will be remotely accessible by conference call.  Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard. 

Conference Call Access 
USA/Canada Phone Number: 888-390-8568
Access code: 8162989

 

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least three days prior to the meeting. If you experience any technical problems with the conference call, please e-mail at helpdeskiacc@gmail.com or call the IACC Technical Support Help Line at 415-652-8023.

 

Please visit the IACC Events page for the latest information about the call, remote access information, the agenda, materials and information about prior IACC events.

 

Contact Person for this meeting is:

 

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Idil – Somali Autism Mom & Minority Advocate