Alright – so, from time to time – I get contacted by an autism researcher that wants to do a Somali autism study. They are usually from various states and sometimes from Europe asking for my input or comments. First, I want to make it clear that I really appreciate being asked and respecting my opinion. However, it has become hard to answer everyone especially when most are asking similar questions.
So, I decided to answer them in this post and hope people read it because it might take me a while to respond to your questions.
1. What do you think is the reason for the high rate of autism in the Somali community in Minn?
Answer – I am not a researcher, but I would say there is a predisposition gene and some kind of an environmental trigger.
2. Do you think that environmental trigger is the vaccines?
Answer – I understand many parents believe that and I always validate all parent’s concerns, however research has stated there is no link between MMR vaccine and autism. I also think there are a lot of Somali women that bleach their skin with creams that contain mercury which causes developmental disorders like autism.
3. Is there still stigma with autism in the Somali community?
Answer – this is a tough question because for the past 4 or 5 years, I and other parents have tried hard to take away the stigma from mental health and disabilities in our community. Sadly, it is still there and people assume autism is a disease which it is not. It is a disability that is lifelong and we must appreciate everyone’s ability and help them with their challenges. I also hope that those whose children don’t have autism are kinder and have more compassion for our kids and our autism families. Often autism families hide from them and not from other autism families. In other words, there is not as much stigma, but it is not all gone either.
4. What is your next step in advocacy for autism in the Somali community?
Answer – I think after CMS approves MN DHS autism state plan to cover autism therapy for low income families – I would like to rest and leave the advocacy scene for a while. Autism advocacy takes a huge emotional toll on parents, and I never wanted to be the face for autism in the Somali community. I just wanted to raise awareness since when we started no one knew about this disorder in our community. And, I think we have accomplished that. Plus, my backbone community leaders who were the wind behind my advocacy wings have either sadly passed away or moved away. RIP – Hussein Samatar and Abdulrahman Adam and I miss you Dr Fahia and Mohamed Jibrell.
5. Do you think there is a lot of discrimination in services and research in autism?
Answer – Yes and No. I think to say everyone purposely discriminates against minority autism children and families is both silly and ludicrous. There are a lot good and sincere autism professionals that really want to help all kids and families. By the same token, I wholeheartedly believe that racial autism disparity comes from subtle & bias policies which I think should be fought via policy changes and diversifying the autism workforce. For example, every autism research must have diverse staff and diverse subjects and every autism program must have diverse staff and families to reflect their environment. I think that is the best way to defeat and eliminate autism racial disparity. In addition, I think the CLAS guidelines must be included everywhere. Finally, communities of color must learn to become therapist, researchers and providers themselves.
6. Are you currently advocating for Somali Autism Research funding?
Answer – No. I think other parents and community members must now continue this work.
Above questions are usually what I get from autism researchers – I would also add please hire a Somali person if you are really interested in doing Somali autism research. Let me put it this way, nothing about us without us which is the same logo used by self autistic advocates and they say it better than anyone.
If you are a student doing a paper and need a parent’s input, I recommend contacting Somali autism parent network which has lots of Somali parents who can provide you what you need.
Thanks and I hope this makes sense and it helps all of us find answers to autism while celebrating all autism people.
Above words do not represent any agency, committee or candidate
Idil – Somali Autism Mom & Minority Advocate