Alright – so, there has been a lot of news about autism lately at the federal level. This is a good thing. There are soooo many emotions going through my heart and soul about this that go back almost twenty years. As we all know, autism is a spectrum meaning no two individuals have the same challenges or strengths. In other words, everyone is different and as the saying goes – if you met one person with autism, you met one person with autism.
I remember back over a decade ago, I was invited to the only so far White House Autism Conference. We (researchers, parents, advocates, etc.) we were put into different groups. I wanted to be in the research group, but they put me in the services group. When it was my turn to speak, I said “I want a cause and a cure for autism”. There were maybe two or three autistics there in our group. One of them, the girl said – we do not need to be cured. I argued with her by saying, my son’s autism needs a cure. He has non-verbal autism. She did not understand things from my or my son’s perspective. You see one of the characteristics of autism even in the mild form is lack of empathy or simply putting yourself in someone else’s shoes.
There are those with mild form of autism who can attend White House conferences, finish college, get married, have children who speak for ALL Autism. I disagree with that 100%. They just want to be accepted which is fine. I do not accept my son’s autism and that does not equate to anything else other than if autism is a medical condition, then we need a medical solution – full stop. Now, if your autism is a little quirky and you can live independently, then good for you. But you have zero right nor audacity to speak for profound autism. We, the parents, and families who have not slept for years and worry daily have the right and obligation to speak for our children – period.
I am ecstatic the secretary of health and human services is finally speaking to find a cause and a cure for the kind of autism that has stolen dreams. Yes, autism steals dreams. It is tiring, exhausting, heartbreaking and breaks souls. YES, with no hesitation and no reservation, we need a cure for this. What makes some kids verbal and some not, where in the brain controls safety, sensory, behaviors, and how can we address that? I want a cure for my son’s autism. I would give every organ in my body for my son to be verbal. Somalis are an oral society, and autism is silencing our children. That should be unacceptable to everyone.
The above words do not reflect any candidate, agency, or committee.
Idil Abdull – Somali Autism Mom & retired advocate.