Wow, then cry then more crying then more tears was my first reaction after I heard of the results of Somali Autism Study.
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