tag:blogger.com,1999:blog-5751271189667675662.post7495555225219535198..comments2024-03-12T03:43:35.156-04:00Comments on Look Me In The Eye: I resign my roles at Autism Speaks John Robisonhttp://www.blogger.com/profile/07407165016025447113noreply@blogger.comBlogger214125tag:blogger.com,1999:blog-5751271189667675662.post-12293360894424100202017-08-07T15:38:39.822-04:002017-08-07T15:38:39.822-04:00Dear Mr. Robison,
I know this is four years late...Dear Mr. Robison, <br /><br />I know this is four years later, and I don't know whether or not you still receive notices on comments posted to your older blog posts, but I wanted to add my deep THANKS to you for speaking up for yourself, for my son with Aspergers, and indeed for hundreds of thousands of others on the autism spectrum who need understanding, empathy and support rather than conformity and cures. We NEED your voice and your leadership more than ever! <br /><br />THANK YOU, <br />Lisa Gatti<br />Partnership for Extraordinary MindsLMLhttps://www.blogger.com/profile/09643241959763712075noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-23390047866410685512017-01-08T09:43:27.926-05:002017-01-08T09:43:27.926-05:00Thank you for writing this piece and your advocacy...Thank you for writing this piece and your advocacy. <3Genevievehttps://www.blogger.com/profile/01641545174124325276noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-13836767873052705332015-02-25T09:02:20.999-05:002015-02-25T09:02:20.999-05:00Thank you, John. I was diagnosed with mild autism...Thank you, John. I was diagnosed with mild autism as an adult. I read one of your books sometime beforehand, and it gave me a lot of insight about you and how autism could affect people.<br />I just read your reasons for no longer being with Autism Speaks, and you said things that I agree with.<br />We all need the knowledge that you and Temple Grandin can give out.Anonymoushttps://www.blogger.com/profile/17619015792866718354noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-32510756094310322892015-02-21T20:16:32.829-05:002015-02-21T20:16:32.829-05:00John, I am late to this, but I THANK you for your ...John, I am late to this, but I THANK you for your words. I read Look Me in the Eye for a class on autism and ADHD, and thoroughly annotated it because I related. I was diagnosed with ADHD (FINALLY) at 36, nearly two years ago and the right treatment has revolutionized my life. It's allowed me to put the puzzle pieces of my often shambolic and painful life together, and this entry speaks to my experience as a person who is not neurotypical and has suffered greatly for it. I've benefitted tremendously, too - and I am a strong advocate in my position as teacher for my students with ADHD and other differences, teaching them coping skills, self advocacy, and most of all, self acceptance. Every neurological difference confers gifts, and it's so important to find those gifts and cultivate them. It's even more important to me now that my two very young children are not neurotypical. THANK YOU.Kellyhttps://www.blogger.com/profile/07314709189458048174noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-25715163464901697152014-02-06T17:54:42.568-05:002014-02-06T17:54:42.568-05:00"Autism Speaks is the only major medical or m..."Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target."<br /><br />Unfortunately, you're wrong about that. The Muscular Dystrophy Association has been widely criticized by adults with MD, because of their 'pitiful dying children' approach to fundraising.Ettinahttps://www.blogger.com/profile/12391427859178500937noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-14529443777325170622013-12-09T08:50:00.616-05:002013-12-09T08:50:00.616-05:00John - Thank you for your conversation here with ...John - Thank you for your conversation here with me. It helps me see why my viewpoint has been misunderstood and dismissed as frivolous by IACC members and others.<br /><br />Autism has many causes. Most children with autism are exceptionally beautiful. A cure or continued growth is what we all aimed for. Brain damage is not what most people want to consider. When a child doesn’t learn to speak, and doesn’t respond or hyper-reacts to sounds, we want a hearing aid to be invented.<br /><br />When a child suffers a concussion or becomes ill with encephalitis, we hold out hope for recovery by “neural plasticity.” Sadly, we do know that children who sniff glue or experiment with “recreational” drugs often go over the brink, but we hang onto the hope for recovery.<br /><br />Over the past four decades, searching for answers, I have learned that nuclei in the brainstem auditory pathway are susceptible to damage from toxic substances as well as oxygen insufficiency. This has been discussed in the medical literature since Wernicke in 1881 described bilaterally symmetric brainstem damage in cases of alcoholism and one case of sulfuric acid poisoning (translated by Thomson AD et al. Alcohol & Alcoholism 43:174, 2008), and I have been attacked as rude for comparing autism to alcoholism.<br /><br />However, autism is associated with fetal alcohol syndrome and prenatal exposure to valproic acid. Autism as part of PKU (phenylketonuria) is likely the result of toxic injury from abnormal metabolites like phenyl-pyruvic acid. Auditory system damage has been described in several papers on toxic injury. <br /><br />I have tried to point out to the IACC a seminal paper by Seymour Kety, which reported higher blood flow in nuclei of the brainstem auditory pathway than anywhere else in the brain (Bull N Y Acad Med. 1962 Dec;38:799, free online via PubMed). High blood flow makes the auditory system more susceptible to damage than any other area of the brain. I wish they would bring this up for discussion.<br /><br />Autism has many causes. All causes are likely to affect the auditory system, and undermine a child’s ability to learn to speak.<br />Anonymoushttps://www.blogger.com/profile/00550110688642134463noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-3530554384810676992013-12-08T18:44:09.705-05:002013-12-08T18:44:09.705-05:00Eileen, I am aware that the WHO suggests delaying ...Eileen, I am aware that the WHO suggests delaying cord clamping and this is a matter for discussion prior to many births today. Certainly delayed clamping and cutting is consistent with evolution; meaning I'd be inclined to trust delayed clamping more.<br /><br />But is that a major cause of autism? Probably not. Ongoing genetic and environmental studies show too many paths into autism for one explanation such as this to predominate. Is it a possible cause of some autism? Quite possibly. <br /><br />Is it worthy of study? Probably but the existing recent clamping studies I saw in Pubmed looked at some thousands of infants without finding differences in autism rates. That said, the jury remains out on the wisdom of the practice.<br /><br />Clearly you believe it's a factor in your own family. I know nothing of you or them and I would not presume to argue with you. <br /><br />I think the existing genetic and environmental research is headed in a good direction for a large percentage of the more impacted population. I just think the translation time is going to be longer than people want, and of course success is not assured.<br /><br />You made a remarks about "Accepting brain damage" which suggests you may not have grasped my point about societal acceptance and accommodation. Such AandA would mean there would be more places where people like your son would be supported and assisted. It's not about "accepting brain damage" It's about accepting and supporting all people and helping them as best we can, which we work to relieve major disability that is at present not treatable.<br /><br />What else would you propose for the short term for people like your son. I see your opinion re clamping, but that does nothing for those living with autism today. Acceptance and support, backed up by research and ultimately remediation, is the reality we have<br /><br /> John Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-63375258171102236172013-12-08T17:38:38.253-05:002013-12-08T17:38:38.253-05:00A mechanism by which severe autistic disability oc...A mechanism by which severe autistic disability occurs should have been recognized decades ago. Two years after my son Conrad was diagnosed with autism, the October 1969 issue of Scientific American arrived in my mailbox. The article by William Windle on asphyxia at birth had pictures of damaged nuclei in the brainstem auditory pathway, and I realized that could explain Conrad’s peculiar echolalic speech. He was not hearing syllable and word boundaries, thus recited whole phrases badly out of context. <br /><br />I published a paper on this (Simon N, Arch Gen Psychiatry. 1975 Nov;32:1439) as part of my dissertation research. I presented a summary five years ago at the IACC meeting, online at<br />http://iacc.hhs.gov/events/2008/slides_eileen_simon_112108.pdf<br /><br />Can cures for brain damage be found? Windle’s article should have led to prevention more than four decades ago. Instead, obstetrics began ignoring traditional teaching that a baby should be breathing before terminating placental circulation by clamping the umbilical cord. In the mid 1980s a new protocol to clamp the cord immediately after birth was adopted. This will cause asphyxia if the baby has not begun to breathe, and damage of the kind reported by Windle will occur.<br /><br />Acceptance of brain damage does not help relieve the grieving and hardships involved in raising a brain-damaged child. I am glad to hear you read the public comments submitted to the IACC. I hope you will re-read some of mine, and request they be discussed by the committee.<br />Anonymoushttps://www.blogger.com/profile/00550110688642134463noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-30198668856241256212013-12-07T22:53:29.835-05:002013-12-07T22:53:29.835-05:00Eileen - It's not done yet, but I think you wi...Eileen - It's not done yet, but I think you will find the update to the plan will call for more attention to be paid to those with more severe impairments. I agree this is an area where there is little progress from the perspective of the families.<br /><br />However, there is significant progress in understanding the mechanisms my which severe autistic disability occurs. Some of that is via genetics; surely others with symptoms of severe autism may have suffered some sort of injury, where by a process like oxygen deprivation, chemical poisoning, or something else.<br /><br />That's the first step. We need to understand what went wrong, if we are to devise medical cures. I'm sorry to say that meaningful medical help for the most severely impacted is in most cases some years away.<br /><br />That - to me - makes understanding, acceptance, and improved community support all the more important. <br /><br />It's not that the severely disabled population is ignored by science. In fact, most of the basic-level research is directed right at this group. Rather, the issue for families today is that translation of tomorrow's discoveries into useful therapies is still a 10-15 year process barring some new discovery that might translate faster. I wish I had a quicker answer.<br /><br />Many people feel the public comments are ignored at IACC, because our agenda never really permits any extended dialogue or discussion. To do that, we would need to go to a two-day meeting format and that is not my decision to make. We are already limited by budget. Many of us are volunteers. I don't know if such a change is practical, yet I understand the community's frustration. Remember I don't make those decisions, nor do the other members at the table around me. Congress mandated what we are do to - the Strategic Plan being one of our charges - and they appropriate the money for it to happen. In this case, they did not appropriate enough to fully address the expressed concerns of people like yourself. <br /><br />Speaking for myself, I do read the comments and I try and keep the ideas expressed in mind when I act or speak for the IACCJohn Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-64583422146875355902013-12-07T17:59:10.404-05:002013-12-07T17:59:10.404-05:00John, thank you for taking time to respond to my e...John, thank you for taking time to respond to my early morning post today. <br /><br />I have submitted a proposed addendum for the IACC Strategic Plan to be discussed next Friday. How could developmental language disorder be so badly overlooked in that plan? <br /><br />For more than a decade, since 2003, I have been trying to initiate a conversation about the evidence published in the October 1969 issue of the Scientific American, where William Windle reported damage to nuclei in the brainstem auditory pathway caused by asphyxia at birth. In human children this should be considered an impediment to learning to speak, and an impediment to normal maturation of the language areas in the cerebral cortex.<br /><br />Why have my comments been ignored? Why are all public comments ignored by this committee? Talk about respect, the IACC is most disrespectful of those of us most seriously affected by autism. <br /><br />But thank you again for responding to my post this morning. I hope we can engage in further conversation. Your baby picture, by the way, looks very much like those of my son Conrad. His death at the age of 31 is an outrageous example of how horribly disrespected people with autism can be.<br />Anonymoushttps://www.blogger.com/profile/00550110688642134463noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-28038605874564596502013-12-07T11:05:35.049-05:002013-12-07T11:05:35.049-05:00With all due respect, Eileen, it is not wishy wash...With all due respect, Eileen, it is not wishy washy to say society must be more accepting and supportive of people like me, or your son. It is essential. If that came true, you would not have to worry so terribly about what will happen to him when you are gone.<br /><br />If you follow my activities, and my writing, you should know that I am a strong advocate for the development of medical therapies that ease suffering and improve functional ability for our more serenely impacted population. In fact, that message should be expressed yet again in the IACC Strategic Plan when it's released early next year.<br /><br />Respect, accommodation, and the development of tools, therapies and treatments are not mutually exclusive. They are complimentary and equally important.John Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-73611987799210157532013-12-07T06:27:44.442-05:002013-12-07T06:27:44.442-05:00My son is now 51 years old. He did not speak unti...My son is now 51 years old. He did not speak until he was nearly six years old. He taught himself to speak by first learning to read. He is still not able to live independently. He lives in a group home run by a contractor to the Massachusetts Department of Mental Health (DMH). Now DMH is saying that they may not be able to provide housing for all “consumers” in the DMH system. <br /><br />I am now in my twilight years. At best I may live a decade or two longer. If he comes to live with me, what happens when I am gone? I am very worried that my son will be out on the streets. He now has “metabolic syndrome” and diabetes from all the psych meds he has been given. He can’t manage these problems on his own, even with the help of so-called special teams that provide out-reach to the homeless.<br /><br />How lovely, and wishy-washy, to say that society must become more accepting of people like my son. He needs help, not acceptance. Please wake up. Autism is a serious disability, not just a “difference.”<br />Anonymoushttps://www.blogger.com/profile/00550110688642134463noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-41335138993442852072013-12-06T08:42:16.221-05:002013-12-06T08:42:16.221-05:00Emancipation of a minority can only be succesfull ...Emancipation of a minority can only be succesfull when the to be emancipated have a leading role. The discription of Autism Speaks can internationally be compared with the Dutch "Nederlandse Vereniging Autisme" or the British National Autistic Society. Isn't it time for people with autism to unite globaly?Anonymoushttps://www.blogger.com/profile/15879730785454664933noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-7933430478970591632013-11-28T15:58:23.258-05:002013-11-28T15:58:23.258-05:00
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When I co-authored “Chicken Soup for the ...John; <br /> <br />When I co-authored “Chicken Soup for the Soul, Children with Special Needs” with Jack Canfield, Mark Victor Hansen and Heather McNamara, the biggest dilemma we faced was what to call the book ,as folks both did and did not want to be labeled in certain ways. It was reported to be the most challenging title the Chicken Soup people wrestled with to date. What we learned was that people on the autism spectrum and other spectrums for that matter, are people first before their condition! <br /><br />Some of my favorite people are on the autism spectrum! My dad, my son, Stephen Shore, my sister (maybe) and even a bit of me! When my son was diagnosed in 1992 I embraced his autism and mostly tried to focus on his gifts, strengths and talents rather than the deficits he displayed at the time, after I got over the initial denial of it all. Of course I had the same challenges families face in those beginning years and could have chosen to have a negative attitude and chose instead to focus on the positives as much as I could. As part of his early intervention, before the days of behavioral interventions, I wasn’t about to wait around for science to prove to me whether certain methodologies were legit or not. I just wanted to find tools that would enable him to have the best life he could have.<br /><br /> Of course I used my own “mom” common sense compass, built into most moms, though I tried things to help my son that were not necessarily science based. They were “mom” based. My real question is who are we to “fix” people? All people are broken in some way, and to different degrees. ALL people have different ways of being though certainly no one is “better” than the next person. If we feel with our hearts and souls while helping people through tough times, in whatever way makes sense at the time, the world will be a better place! <br /><br />Our time on the planet is all-together too short to waste on efforts that take an extraordinary amount of time to prove one way or the other. Often, by the time double blind studies are concluded, methodologies have changed. Don’t get me wrong, I’m not a Polyanna, with an altruistic view, and I do believe in research with a true return on investment. I propose that we focus to create a better overall society that promotes everybody flourishing.<br /><br />Autism is not a disease, an illness or a disorder, it’s a different order and people on the spectrum as well as other spectrums, are wonderful souls and deserve the best, most successful lives, whatever that might look like. Thanks for being you, John!<br /><br />Karen Simmons<br />CEO, AUTISM TODAY<br />Autism Today Bloghttps://www.blogger.com/profile/11953478270318274041noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-13940290500451626232013-11-22T05:58:43.428-05:002013-11-22T05:58:43.428-05:00"No one says the Cancer Society does not spea..."No one says the Cancer Society does not speak for them."<br /><br />Actually, they do, in different words:<br /><br />http://youtu.be/3QPZfcYTUaA<br /><br />I pray that one day that Autism Speaks will be exposed the way the Susan G. Komen for the Cure organization has been. <br /><br />There needs to be major changes in the way health care operates in our country. John's decision is a big step in the right direction.<br /><br />Feels good.ErikBlainehttps://www.blogger.com/profile/15120843902439067057noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-16013946250595233112013-11-21T13:26:18.030-05:002013-11-21T13:26:18.030-05:00I've often thought Autism speaks spent too muc...I've often thought Autism speaks spent too mucy money on actual fundraising and administration. Thanks for the other links.<br />JoAnnJoAnnhttps://www.blogger.com/profile/10004326009236773470noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-54516231405324456562013-11-19T00:47:05.224-05:002013-11-19T00:47:05.224-05:00Thank you. :-) I wish I could think of something m...Thank you. :-) I wish I could think of something more profound to say, but emotions are one thing for me, and words are another ... so I can only say 'thank you'.Anonymoushttps://www.blogger.com/profile/01806615451690057869noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-71820310679739664472013-11-18T11:19:11.842-05:002013-11-18T11:19:11.842-05:00Thank you for your eloquence, and for putting the ...Thank you for your eloquence, and for putting the voice of my son first, before the "parent/grand parent" and community voice. <br /><br />I live each day with full knowledge as witness to my son's absolute gifts to this world. It is more our challenge as a society to embrace and not destroy those who embody the gifts. Yes, Suzanne Wright described many of my days, and seasons - but John described the way forward for my family.<br /><br />Your metaphor of fire has to be the most powerful I have read in the last ten years. Thank you.beget; a verb...gailynn's bloghttps://www.blogger.com/profile/03009525491222687845noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-23256333821772479082013-11-18T08:21:17.780-05:002013-11-18T08:21:17.780-05:00Thank you so much for your stance. I greatly appre...Thank you so much for your stance. I greatly appreciate hearing the voices of other adults on the autism spectrum. Best wishes and gratitude.Lorihttps://www.blogger.com/profile/02454258188873701413noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-28050477582462041482013-11-18T06:19:12.647-05:002013-11-18T06:19:12.647-05:00John, that was a highly accurate statement and wel...John, that was a highly accurate statement and well done. I think I might have criticised you for trying to change things from within not long after you joined and I admit to feeling somewhat vindicated with that now. No offence intended of course. I've known for a long time now that you can't change people like Wright - or Doherty it appears, or anyone else who uses hate speech to describe the Autistic Spectrum as Cherie did. They don't understand and they don't want to understand.<br /><br />Autism Speaks is not the same as the IACC as Kulp tried to state, and I think you know that as well. So I certainly don't expect you to resign from that.<br /><br />Keep up the good fight, mate!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-46430858926641983332013-11-18T01:21:24.999-05:002013-11-18T01:21:24.999-05:00John, I respect your decision because it's you...John, I respect your decision because it's your own, and I understand your stance all too well; I had to step down in a similar situation where reactivity drove the bus rather than proactivity. Nevertheless, I revel in the thought of who might fill your seat because change could go either way. My prayer is that Autism Speaks will rise above the current status; people with autism need a positive voice in this world! Thank you, and keep sharing your gifts with the world! Sincerely, Treva MaitlandTrevahttps://www.blogger.com/profile/04346380144278653896noreply@blogger.com