ADVOCACY “All men are created equal,” except if they have autism JK<G?<ED%<;C<JFE#G_; ;@I<:KFIF=K?<8LK@JD I<J<8I:?@EJK@KLK< K_\`jjl\f][`jZi`d`eXk`fe `jXe`dgfikXekkfg`Zn`k_`e k_\Xlk`jdZfddle`kp#efn dfi\k_Xe\m\i%@k`jY\Zfd`e^ dfi\Xe[dfi\XggXi\ekk_Xk k_\dXafi`kpf]g\fgc\fek_\ Xlk`jdjg\Zkildjl]]\i]ifd df[\iXk\kfj\m\i\d\[`ZXc gifYc\dj#dXepXi\jlYa\Zk\[ kfj\olXcXYlj\#p\kk_\pXi\ efk^`m\ek_\jXd\Xkk\ek`fe Xe[Zfej`[\iXk`feXjg\fgc\ n_fXi\efkfek_\jg\Zkild%@e fk_\infi[j#`]pfl_Xm\Xlk`jd Xe[Xi\[\Xc`e^n`k_Xd\[`ZXc fij\olXcXYlj\Zi`j`j#k_\ gif]\jj`feXcZfddle`kpd`^_k efk[f\m\ipk_`e^gfjj`Yc\kf _\cg% 40 AUTUMN 2008 THE AUTISM FILE F ighting discrimination has always been an important part of the work of the Autism Research Institute (ARI). ARIÕs founder and former director, Dr. Bernard Rimland, grew up hearing about how his uncle, who lived in Russia, helped a stranger who was inexcusably harassed on the sidewalk by a policeman. His uncle was killed defending the rights of the stranger. This incident had a profound impact on Dr. Rimland, and the rest of his life was focused on helping those who were treated differently by others. When Dr. Rimland found out that his son, Mark, had autism, he quickly learned that physicians, psychologists and social workers blamed him and his wife. He was infuriated when he read the term Òrefrigerator mother,Ó knowing that it did not describe his wife. After combing the research literature on autism, Dr. Rimland concluded that there was not a shred of evidence supporting this vile parentblaming theory; in fact, the behaviors of these children were consistent with a causal neurological / biomedical problem. Outraged, Dr. Rimland wanted to right this wrong. He spent the next Þve years writing his groundbreaking book, Infantile Autism: The Syndrome and a Neural Theory of Behavior, published in 1964. He wanted parents and the medical community to understand the true nature of autism, and he wanted professionals to begin treating children with autism and their parents with respect. Until his death in 2006, Dr. Rimland continued to Þght for the rights of children and adults on the autism spectrum. He worked hard to help pass laws for equal education for children with Reprinted with permission from The Autism File. Autumn 2008. Info@autismÞle.com. disabilities. He was also a well-known critic of several government health agencies and the medical establishment for, as he succinctly put it, Òfailing our children.Ó Today, ARI continues to receive letters, faxes and emails from parents whose children meet with discrimination, especially from the medical community. During his last 10 years of life, Dr. Rimland spent a great deal of time conducting, sponsoring and encouraging research on medical conditions that are common in autism. In 1995, he convened the Þrst international Think Tank on autism. He invited 30 top clinicians and researchers to discuss ways to understand and treat autism spectrum disorders (ASDs). At the end of the session, the consensus was that children with autism do indeed have co-morbid medical problems and that two areas needing particular attention were the immune system and gastrointestinal (GI) system. This, I believe, was the Þrst time that a group of experts acknowledged the importance of GI problems in autism. Dr. Rimland felt that this meeting was a turning point in the Þeld. Many of the participants continued to work together and their camaraderie eventually yielded the ÒDefeat Autism Now!Ó approach. Since the Þrst Defeat Autism Now! meeting, more than 40 scientiÞc papers have been published documenting GI problems in patients with autism. According to some estimates, as many as 70% of individuals with ASD have one or more GI problems, including chronic diarrhea, constipation, inßammation, leaky gut, dysbiosis, acid reßux, and yeast overgrowth. Many experienced doctors who use the Defeat Autism Now! approach have been successful to some degree in treating these GI problems. Unfortunately, more times than not a pediatrician considers these GI problems simply common symptoms in autism and fails or even refuses to consider further assessment and treatment. At ARI we often hear horror stories from parents who were able to set up an appointment for an endoscopy with a gastroenterologist only to have the doctor cancel the appointment as soon as he or she realized that the child had autism. If a child without autism suffered from these types of GI problems, he or she would be referred to a specialist and receive immediate attention. Regardless of whether or not GI problems are more common in autism than in the general population, if an individual presents with these problems, he or she needs to be treated. In a related circumstance, many autistic individuals do not feel normal levels of pain. Some researchers think that this might be due to endorphins, derived from casein and gluten food substances, which leak from the damaged GI tract into the bloodstream, creating an anesthetic effect. There are reports of children on the spectrum who, for example, place a hand on a burning stove or sustain an internal injury (e.g. a ruptured appendix), and yet show no signs of distress or discomfort. An inability to feel pain is a serious matter; but, similar to the GI problems, this lack of pain is often deemed a symptom of autism and no further evaluation is performed. If a child without autism were unable to experience pain, he or she would be referred to a specialist and receive immediate attention. On the topic of discrimination, another important issue is sexual abuse. This will likely become a bigger issue in the near future, when those born during the beginning of the epidemic reach their teenage and young adult years. Young individuals on the spectrum are perfect victims for sexual abuse because they are socially nave and frequently have poor communication skills. Although there is growing concern about sexual abuse within the autism community, there has been very little effort by government agencies to protect these individuals. I know of a recent case in which an Reprinted with permission from The Autism File. Autumn 2008. Info@autismÞle.com. autistic child told his mother that he had been sexually abused. He was able to name names as well as give graphic details of the abuse. The family lives in a large metropolitan area, with child sexual abuse agencies scattered throughout the city and suburbs. In an email to me, the mother wrote, ÒI literally called every center in the area and every forensic psychologist I could Þnd and every one refused to see my son as soon as they heard he was autistic. I may not have found every last one, but I certainly tried.Ó Unfortunately, this case is not unique. If a child without autism made this same accusation, he or she would be referred to a specialist and receive immediate attention. Following the lifeÕs work of Dr. Rimland, ARI is taking action to help end discrimination against children and adults on the autism spectrum. For example, ARI and the Autism Society of America recently co-sponsored a Gastrointestinal Consensus Conference. Researchers from around the world reviewed the scientiÞc literature on GI problems associated with autism and are planning to publish a summary report later this year. We expect that their conclusions will have a profound impact on how individuals with ASD will be evaluated and treated for GI problems. In addition, ARI has entered a dialogue with the American Academy of Pediatrics in order to help pediatricians learn ways to treat children with autism, such as assessing and treating GI problems. And Þnally, ARI has started a life-span initiative in which issues such as sexual abuse will be addressed. ARI recently established a website titled www.AutismDiscrimination. com. It is dedicated to discrimination and autism. On the website, parents are invited to submit their childrenÕs personal encounters with discrimination. As Thomas Jefferson (who is thought to have had AspergerÕs Syndrome) once said, ÒAll men are created equal.Ó Obviously, this is a goal that we must do our best to attain and defend. THE AUTISM FILE AUTUMN 2008 41
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