Friday, February 18, 2011

Dear Dr. Oz (My response to his show on Autism aired 2/17/11)

Last night, I watched your show on Autism.  (thank goodess for DVR) Not only was it incredibly disappointing but it also made me angry.  My son has not been “robbed” of an emotional foundation. 

No. My son is not “broken” so let’s not try to “fix” him. 

And no, Autism is not a “nightmare.”

The audience you so carefully selected was nothing more than a pity party of parents.  Instead of creating awareness and acceptance, your show promoted fear and despair.  I remember when my son was initially diagnosed with autism at 2 years 5 months old – my heart was broken. (He's 5 now.) It was not the way I imagined our lives to be. 

And what I really wanted was hope.  I needed someone to tell me – it’s going to be fine; your son is going to be okay.  I needed to hear it from a parent who had gone through a diagnosis.  No one could offer me that.  I had to find it within myself and create my own community of autism support.  And my heart has healed.  I don’t want anyone feeling sorry for me or my family.

Autism itself, is not the “nightmare.”  The nightmare is dealing with the Board of Education, budget cuts, insurance companies, attaining medicaid waivers, never ending waiting lists, phone calls and photo copies, run-arounds with agencies, lawyers to secure appropriate school placement (because our kids are not entitled to the best), lack of services, lack of awareness and lack of acceptance.  We have learned to live, love and laugh with autism in our lives.  We’ve let go of some dreams, but that’s not to say dreams do not exist – they’ve just been modified.  We are okay.  My son will be okay. 

I’m not saying that autism is easy.  Our life is challenging but again, not from autism.  If I lived in a community where services were readily available, if every 30 minutes of speech, OT or PT wasn’t a fight for approval and if I had an abundant amount of wealth to pay for the best services – yeah, I’d be a whole lot happier.  But I wouldn’t trade or change my son for anything in the world.  Autism adds to his personality, it doesn’t diminish it. 

That being said, children with autism are not “broken,” and they don’t need to be “fixed” – they need to be taught.  Dr. Lovaas said, “If a child cannot learn in the way we teach ... we must teach in a way the child can learn.”  We live in this superficial cookie cutter society where everyone needs to be absolutely perfect, everyone needs to fit in.  And if you don’t – well, what the hell is wrong with you?  Autism is not a disease to be cured. I wish parents would let go of their mainstream dreams and just learn to let the labels and classifications go.  I don’t care what kind of classroom my kid sits in, so long as he is being taught in a way that is most effective for him. 

At the end of the segment – you said Early Intervention was essential.  And the audience agreed.  Dr. Oz, you missed the opportunity for Early Intervention success stories.  Because yes!  There are success stories.  There is hope and laughter and happiness. (see the picture - Does my kid look like a child "robbed" of emotion?)

So NO, Dr. Oz, children with autism are not “robbed” of an emotional foundation.  I’ve seen so many children with autism laugh and cry and love; maybe not in the “typical” way, but those feelings are there.  There are moments when I look at my son and there is a sparkle in his eye and sheer joy in his giggle.  Many children flap their hands when excited.  Others pace back and forth or cover their ears when scared.  Emotion does exist.  Sometimes we need to look a little harder to see it.  What they are robbed of is – unconditional acceptance for who they are and the possibility of what they can achieve if given the appropriate tools to learn.  Society and government agencies rob children, adults and families daily.  Where is the show on that? 

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  1. My son is only mildly autistic, and while he can be a handful sometimes but what 11 year old isn't? I wish more would be done to research cures instead of everyone being concerned on why? It does make me sad sometime though when I think about the things that we all take for granted and how my son and other kids with autism might not be able to lead what we consider to be a normal life. You are absolutely right, they aren't broken. I'm lucky, my son's school has been wonderful and I always wish that there was something more that I could do to show how thankful I am.

  2. Wow I can't believe how idiotic that show was it was totally one sided and no other opinions or success stories this is why a lot of ppl don't like these shows b/c they don't show all sides of an issue. I would think someone as well respected as him could've did a better job. Those other parents are in denial and while I can imagine its hard to deal with diagnosis but refusing to accept it and think your child is going to be mainstream is not facing reality and their energy should be put to helping and advocating. Perfection doesn't exist and ppl who strive for this are in for a let down. You're doing your job as a parent and he's adorable don't let this idiot or any others get you down with "professional" opinions b/c they're just that opinions

  3. Beautifully put! To me Dr. Oz is becoming a joke, more like Maury then Dr. Phil and his credibility has dropped to nil as he seeks more drama then information.
    Great response to a show that in my opinion was a joke.

  4. You absoultly right, I am a mother and wife to Aspbergers Syndorme husband and sons. I fought and fought for 16 years for help, I always looked and researched for a name to what I knew was different about my family. I got nothing but a bunch of lables and diagnoses of schitzophrenia, ADHD, TOURETTS and PILLS AND MORE PILLS. It was most diffiuclt and yes I broke down more often than I would of liked to. But fought the school, the STATE.It seems it was a constant fight for services. I broke and opened some doors for those to come in my community. We have to keep fighting the schools and the states. They can live a healthy and productive life. One of my boys now 22 just got his own apt. something I never thought I would see. Not going to sugar coat this, I did have to fight for services BUT WELL WORTH IT! HIS SELF ESTEEM IS THROUGH THE ROOF AND I CAN SLEEP BETTER KNOWING HE WILL BE OK AND WHEN THE OTHER 2 ARE READY THERE WILL BE HELP FOR THEM AS WELL. GOD BLESS

  5. Thank you all so much! At this point, I'm so beyond the cause. The facts are the numbers are increasing and the government, doctors and education system are not prepared to deal with our children. Let's have that discussion for once!

  6. I think we all of moments where we break down and cry. That's normal. But my emotional break downs come from frustration and fighting with schools and agencies and insurance companies. If I sat around and cried over my child with autism, he would not get the help he needs to succeed.

  7. The memo from the Dr. Oz show looking for parents to be in the audience circulated around here. Did you see it? They were looking for parents whose children were newly diagnosed or who suspected their children may be autistic. Preying on the vulnerable, essentially. Lisa, you nailed it. My anger, sadness, frustration, do not come from who my son is (though our lives would be easier if he would poop in the toilet!!!!) It comes from the inequities I face every day when it comes to practically everything. I know that "fair doesn't mean equal," it means appropriate- how often have you heard that? But what is considered appropriate is often sub-par and broken! By who's standard are we judging what's appropriate?

    My son is a ball of beautiful emotions, a daily reminder of what it means to be human! Why does the media equate autism with lobotomies? Its true that Charlie doesn't give me feedback all the time. I tune my husband out occasionally!

    Keep writing!

  8. Yes - I actually was supposed to be in the audience that day. But with all my meetings, school tours and interviews for Turning 5, I didn't want to take another day off for Dr. Oz. Glad I didn't waste my day!

    I am supposing they didn't choose me for video segment because my answer for the "Personal story of how Autism has changed your life or about your fear of having your child diagnosed as Autistic."
    was - Autism has changed my life in so many ways - it's taught me patience, compassion but most of all it restored my imangination. and then I copied my blog post "The Power of Imagination"

    I was clearly too optimistic about Autism.

  9. And THANK YOU! THANK YOU! THANK YOU ALL for commenting. Hope you all continue to follow our journey and share your experiences. We can all learn from one another.

  10. I was going to make a blog post about this show yesterday, but I couldn't have it said it better myself Lisa! You know us moms, you, me and Amy... we try so hard to be positive and make the best of everything. That show itself was "robbed of an emotional foundation." There were no stories, no happy tears, no one saying, "Yes, it's hard, but it's worth it." What a waste!

  11. Great post, Lisa. Thanks for helping us all better understand. :)

  12. My son is on the spectrum and is also 5. While I don't think he is broken and I love the way he sees the word. I WOULD NOT HESITATE FOR SECOND TO GIVE HIM A FIX.

    If there was a drug or therapy that could remove his behaviors or sensitivities, I would be the first to try it.

  13. Thanks again for the support and readership :)

    @ Anonymous - Thank you for commenting. I appreciate your thoughts. Ultimately, every parent has their own personal choice to make and do what they feel comfortable with. :)

  14. I was at that taping of the show and the majority of parents who were in the audience were disappointed in the subject of the show. The general audience was not told what the topic of the show would be until we got there. So your comment about the audience being a "pity party of parents" is incorrect. I think that Dr. Oz thinks he was being cutting edge by having a show that focuses on autism.


AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.