Monday, June 4, 2012

My Beef with Autism Speaks

Some people find it hard to believe that I…a huge autism advocate…am not on board with Autism Speaks and their initiative.  This has been a long time in the making.  In the beginning, I was all about anything autism.  After all, they have our best interests at heart, right?  But the more I learned, the more I realized they do not.

But ever the optimist in trying to persuade others that our ASD kids are truly sick, and we need to promote wellness first and foremost, I attended an Autism Speaks Community Forum where the regional director and the North & South Carolina director came in to tell us about what they do and to ask us what we want from them.  “Here is your chance”, said my husband. “Go and tell them what you want.  How else will they know?” he persuaded me. 

So off I went, to speak my peace.  That we need studies of vaccinated vs. unvaccinated kids, we need biomedical research, and we need help because our kids are sick. The ladies from Autism Speaks were very nice.  They were compassionate and understanding, but neither has a child on the spectrum.  And neither really has a clue about what is going on in our children’s little bodies.  It is probably not their fault.  I have lived and breathed this stuff for seven years.  I read daily about cutting edge treatments.  I have to, if I am going to give my daughter the chance to heal.  I consider it my job.  The ladies at Autism Speaks are too busy coordinating walks and wearing their puzzle piece pins to get a chance to really find out what ails our children. 

As I sat there during their presentation talking about  “success stories”, I nearly fell out of my chair when I heard the AS representative say, that a mom volunteered her son for an autism medication study and that medication worked well for her son…so wasn’t that just great?  It made me want to vomit.  How is it great that a mom is putting toxins in the form of medication into her already toxic child to cover up the symptoms of Autism but not really figure out what is CAUSING these behaviors.  And it is a new medication…no studies for side effects, no idea of what the long term effects will be.   But okay…as long as my kid stops having meltdowns, who cares how we get there, right? 

Then there was a question about the science (from someone other than me) and the other Autism Speaks lady spoke up and said “Well, we recently appointed a former scientist at Pfizer to help with all that so it is really great…”  REALLY?  That is good?  I consider that a huge conflict of interest.  But then again, when you are an organization that lists the TWO interventions for autism as behavioral therapy and/or medication, I guess you need a pharmaceutical insider to promote the anti-psychotic medications for our toxic kids.  See: .  It just feels so wrong.  To appoint a big pharma insider to the AS board when so many parents feel like it was big pharma that took our children away from us. 

In defense of these AS ladies, one of them called me the next day to speak more about my qualms with Autism Speaks and was genuinely concerned.  She is a very good lady.  She just has a lot to learn.  She asked me if I have spoken to Geri Dawson, Autism Speaks Chief Science Officer, about my science questions.  I didn’t have the heart to tell her that just last year, her very highly paid chief science officer admitted in public that she had no idea about the role of glutathione in autism.  Seriously?  I am a mom and I have known about this for years.  It doesn’t help that AS even funded one of the studies done on this and still she didn’t know.  See:  .  Then the lady said to me that she will e-mail Geri Dawson my question about doing a study of vaccinated vs unvaccinated kids to show the real dangers of our vaccination program in the US and I thought to myself…good for you.  I’m glad you are going to ask her.  Then you will see where she stands.  Because she doesn’t stand for my kid.

My last request to this very kind lady from Autism Speaks was for her to attend an Autism One Conference held each year in Chicago.  A place where parents go to learn about methylation cycles, problems with sulfation in their children’s bodies, oxidative stress, toxicity, food allergies and sensitivities and the gut brain connection.  To learn how to heal our very sick children.  I am a realist.  I know Geri Dawson would not be caught dead there…although it is the first place she should be every year.  It is the place where parents go to get hope.  And my family is living proof that hope is real.  My daughter is recovering…slowly but surely.  Without either of Autism Speaks’ recommended treatments…behavioral therapy or medication.  Because we are healing her from the inside out.  Dealing with the true causes of her disorder.  In my house, autism speaks the truth.  Our kids are sick, and they need true healing.  

I truly hope that one day, Autism Speaks will wake up to the reality that we are losing our kids and medication is not the answer.  After all, AS was formed because one little boy, Christian Wright, regressed into autism after his vaccinations.  Just ask his mother.  


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