As the Mother of an Autistic Child, I Stand with You,Robert De Niro

Thank you for what you tried to bring to light.
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Esther Kuchipudi
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Thank you for what you tried to bring to light.

Dear Mr. De Niro,

I have read a lot of posts on social media in the last few days vilifying the choice that you made to screen a film that explores the possibility that there is a link between autism and vaccinations. I’ve also read a lot of posts applauding the fact that you later decided to pull the film based on the outcry regarding this issue. Of all the things that I’ve read, the part that struck me the most was that you said you were hoping to provide an opportunity for conversation around this issue. As the mother of a 10 year old, nonverbal autistic daughter, I want you to know that I get it. I understand where you’re coming from and I really appreciate your efforts to shine a light on this issue.

I don’t know whether there is a link between autism and vaccinations. I know that the theory that there is a connection has allegedly been debunked several times over. My father and husband are physicians, so I am very aware of the importance of vaccinations. However, as the mother of my daughter, I ask myself at least once a day where her autism came from. I told myself over and over again that I can’t worry about where it came from because she has it and I just have to focus on what we will do to help her as much as we can. For a while, I was really good about putting it out of my mind, and like most parents who are raising a child on the spectrum, I certainly don’t have the time or the energy to worry about the cause when I have to worry about the future.

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In the last few months, however, I haven’t been able to stop thinking about what causes autism. I, like many parents with children on the spectrum, see the statistics. The most alarming one that I’ve seen in recent past is that by 2025, half of the children born in the United States will be diagnosed with autism. The thing that bothers me the most is that the numbers are steadily climbing and we still don’t know what causes it. When my daughter was diagnosed 7 years ago, I believe the statistic was something like 1 in 112. My father tells me that in all of his years of practice, he never once saw a child that presented like my daughter. 

Something has happened in recent years that has caused the spike in autism and yet no one seems to treat it like the epidemic that it is. I find that maddening and infuriating. Common sense tells me that there must be something environmental that has caused the increase in incidence. I would be lying if I didn’t say that I have a nagging feeling that someone out there may know exactly what causes it but maybe it’s not being disclosed because it will have an economic effect. 

Maybe that makes me guilty of believing in conspiracy theories or of being an alarmist, but when parents like us live this diagnosis with our beloved children, day in and day out, and we worry and fret about the future, how can anyone fault us for having these questions? I am, of course, aware that physicians are definitely diagnosing more accurately today than they did 50 years ago because they know more about autism but even so, it is undeniable that there is an increase in incidence and that increase is alarming.The article that has gotten the most traction regarding your decision to screen this film is the Forbes article, written by Tara Haelle. She said something in that article that really made me angry.

“It would have continued the stigmatization of autistic individuals by portraying them as “damaged” “victims” instead of portraying them as individuals with differences in their neurobiology that can be a disability, but also contributes to the unique people they are.” 

I find this infuriating because I think it is exactly that sort of thinking that causes people to diminish the seriousness of this diagnosis. 

It is debilitating, expensive and frightening.

I love my daughter for all that she is but I have no illusions about the likelihood that she will need a tremendous amount of support in her adult life. The knowledge that she will most likely outlive me by upwards of 30 years is a thought that has caused me many sleepless nights. The knowledge that my son will, most likely, have to be as responsible for his sister as he will his own children weighs heavily on me. We have been fortunate in being able to provide therapy for our daughter at no small cost and the knowledge that there are so many parents out there who love their children just as much as we do, but they can’t give their kids the same therapy because the cost is prohibitive weighs heavily on my heart as well. 

There are individuals on the spectrum who can take heart that the neurological differences they have because of this diagnosis do make them unique in a way that can be celebrated. My daughter is loving and magical and I wouldn’t trade her for the world. But I have to be honest and say that her differences are most certainly a disability and if I could take them away…if I could take her autism away, I would do it in a heartbeat. I agree with Ms. Haelle that there needs to be great emphasis on providing support for families dealing with the diagnosis and I agree that there need to be programs that provide support for adults on the spectrum but I also strongly believe that we need to know what is causing autism. I will never understand how the numbers have risen to this level without anyone being able to point to a concrete cause. I sincerely hope that the numbers don’t continue to rise.

Mr. De Niro, I watched a video tonight that showed you breaking down during an interview where it was shared that you understand what it is to parent a child with a disability. I cried when I watched it. I get it. I know what you are feeling. We’re just parents who want to protect our children. I think you’re a parent who hopes that other parents won’t have to go through the struggles we have gone through with our children. Maybe this wasn’t the perfect film to screen to provide an opportunity for conversation, but I really, truly appreciate your desire to create a platform for conversation. 

Please, PLEASE don’t stop trying to provide that platform. I hope that the discussion that has happened around the controversy of this particular movie will light a fire. I hope that people will start to push for answers.It is hard being a parent. I think it’s even harder to be a parent of a child on the spectrum. I know that it breaks your heart when you can’t reach your child. I know it because I live it, just like you, every single day. From this autism mom to you, I GET IT. And I love you for caring enough to take a stand and share your story.

Thank you, Mr. De Niro.