Truth in reality, not as it has been presented over and over to an accepting public: "My name is Jill Rubolino. I am the mother of a ten year old son who is recovered from autism and also a co-founder of the parent support group AIM, Autism Is Medical. I appreciate the opportunity to speak to you today. This is my first time attending the IACC meeting and I am appalled at the tremendous disconnect between what is discussed here and the reality of what is happening to hundreds of thousands of children and families in our country right now. Because I have only three minutes, first I’m going to read ten statements of truth followed by three requests. 1. Thousands of children become sick first, and then get diagnosed with Autism later. 2. Their illnesses create symptoms that are interpreted as behaviors ONLY because physicians deviate from the basic practice of medicine and no physical or diagnostic assessment is ever performed. 3. Those “behaviors” are funneled into a diagnosis of Autism and the child is left untreated and becomes sicker. 4. The parents are left to fend for themselves. 5. There is no assistance or support. 6. The children suffer in extreme pain while health care providers refuse to assess their pain and refuse treat their pain. They use the excuse that they cannot assess their pain despite the existence of multiple standardized pain assessment tools which have been developed for every patient population including nonverbal patients. Pain has been considered the fifth vital sign for over ten years and it is every patient’s right to have their pain assessed and treated as stated by the Joint Commission. 7. Bowel disease, seizure disorder, immunological dysfunction and mitochondrial disorders are the norm in autism, not the exception so verbiage used to refer to these things as “rare” needs to stop. 8. These illnesses are not comorbidities but causation and they need to be investigated. 9. In the seven years I spent recovering my child, I wasn’t even aware that this committee existed, nor am I aware of anything that has been accomplished by this committee. Nothing you’ve talked about today has helped me, my child, or any one of my hundreds of friend’s children which means you are painfully ineffective. 10. Medical neglect and discrimination against this exponentially expanding acutely and chronically ill pediatric patient population will not go unchecked. Our children deserve the same access to appropriate healthcare as every other patient. Here are my requests: 1. At 1 in 50 children diagnosed as autistic, our children statistically outnumber all other pediatric illnesses. I request that this committee address this as the emergency that it is. 2. I request a medically based standard of care for autism be developed and implemented across the broad spectrum of all health care settings starting with the pediatricians. The first intervention should be a diagnostic test, not a referral for a developmental screening. 3. Lastly, I request that this committee recognize that they are responsible for their own direction. Failing to make the medical needs of these children a priority is endorsing the continued denial of appropriate medical care and subsequent medical neglect of a generation of children. Thank you." Autism IS Medical.
Posted on: Wed, 10 Jul 2013 06:40:14 +0000
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