tag:blogger.com,1999:blog-5751271189667675662.post6485334300995906169..comments2024-03-20T03:23:27.688-04:00Comments on Look Me In The Eye: Philanthropy in Autism - A New Direction is NeededJohn Robisonhttp://www.blogger.com/profile/07407165016025447113noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-5751271189667675662.post-92089129866468246602016-03-23T13:15:46.950-04:002016-03-23T13:15:46.950-04:00Bingo: "What they have not done is fund majo...Bingo: "What they have not done is fund major studies into better societal accommodation. Very little has been done to help autistic people find work, keep jobs, and build stable, independent, and happy adult lives. That stands as a critical unfilled need in the autism community."<br /><br />We need to take tribal approach to meet that end. That is, recognizing that within the community each person fulfills a role and everything is done for the betterment of the whole --not the individual. I think of how this realization can alter the perspective of parents who have an adult child with a college degree, who is "only" able to find a minimum wage job. Sure, a disappointment to the parent, but that person might be trying their very hardest. And while you don't want to inflate what it is, a minimum wage job is better than none. <br /><br />It does put the onus on the parent or on the community of educators, social workers, professors to work on creating or finding the right opportunities for people on the spectrum, rather than trying to force fit them to a one-size-fits all. And that's where much more resources need to be allocated and advocated for. Because what I've found is that as the child turns into an adult, the parents are very much alone in their challenges. And that doesn't have to be the case, if we take the tribal approach.<br /><br />Kananihttps://www.blogger.com/profile/08317494343177263398noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-63470404901178965322016-03-22T14:49:55.735-04:002016-03-22T14:49:55.735-04:00Hi John --
I heard your NPR interview this mornin...Hi John --<br /><br />I heard your NPR interview this morning and wanted to say how much I enjoyed it. You are a good man.<br /><br />Tom Durwood<br />PhiladelphiaAnonymoushttps://www.blogger.com/profile/04525554857601793813noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-14308297784880966122016-03-06T20:30:23.019-05:002016-03-06T20:30:23.019-05:00In 1954 I delivered a healthy baby boy--all tests ...In 1954 I delivered a healthy baby boy--all tests were normal and he grew quite normally. One day, when he was 18 months old, he suddenly withdrew and stopped talking, sat and watched leaves flutter, or rain drops for hours. We took him to the chief child psychiatrist at a very well respected child guidance clinic, who told us first, it was probably my fault, because I was not "warm enough" and secondly, since he obviously had developed early childhood schizophrenia and should be institutionalized, My husband and and I were horrified and refused to do that. We kept him at home with his siblings and, while it was difficult, he did seem to absorb everything going on, though he could not communicate. Then one day when he had just turned 4, he suddenly looked at all of us, including the pets and pointed to each and named us perfectly. His school years were difficult, with some classmates essentially bullying him. Luckily for us, the school did accommodate him, and when he reach high school, he was enrolled in the culinary arts program at the area technical school,where he excelled and even won an award. He has had his ups and downs, but has succeeded beyond what we ever expected. He is employed at a very exclusive restaurant in Arizona, and living in apartment with an old friend. He is now 63 and thinking about how he will cope when he has to retire, and will no longer have a routine to follow. That shows a great deal of insight..GrannyPhttps://www.blogger.com/profile/09853524753472400884noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-72035644941045937672016-02-08T18:40:30.802-05:002016-02-08T18:40:30.802-05:00This female activist/advocate also figured out lat...This female activist/advocate also figured out late in the game that brain was different due to Asperger's. Having been a foot soldier, becoming a nationally known activist and being recommended for DOD Peer Review Panal (in the overly pink world of breast cancer), I have but one question for you, sir. Would you please point me in the correct direction? Being well acquainted with your writing, it seems we are simpatico on the direction that needs to be taken - better quality of life and more compassion and empathy for all. Your past alignments with autism NFPs and your decisions to take the paths that you have taken = logical.<br /><br />There is no cure. We are not diseased. We are ill-at-ease because NTs do not "get" us. Our brains work different. That's it.<br /><br />It's time for them to understand US. And if they have to be killed with kindness or beautifully designed, light and hair-trigger balanced metaphoric bludgeoning devices - I'm in.The Devil's Advocatehttps://www.blogger.com/profile/05517625566697880754noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-9730975525641280532016-02-07T08:15:48.969-05:002016-02-07T08:15:48.969-05:00I feel each of the paths was begun by the particul...I feel each of the paths was begun by the particular story of the founders children, grandchildren, unique to that child. I understand the medical path. Having taught Special Education, it's pretty obvious most of those educated outside the regular classroom have totally unique challenges. It's no secret that a medical problem, if understood and caught early enough, can change the developmental outcome of the child. There are many things we don't know...but there are many things we do. Scientific understanding could lead to far less "suffering". (You have to be careful with that word--by this, I mean dependence on medical interventions for a quality of life, and not something interpreted eugenically.)They saw it medically because they saw their children's/grandchildren's troubles as medical. The Wrights went the vaccine route because they had questions regarding Christian's reactions that Science had no answers for. Having had my own child have a severe reaction that seems more common among kids with neurological problems helps me to understand this. But for Ben, whatever causes his neurological differences, probably determined at his conception, is what caused the reaction, not the other way around, to my weak mind. He was set up, biologically. I know 1 other person who sees it this way...in the whole world...<br /><br />On the other hand, my son, who spent 90% of his time in the regular classroom, and in fact is somewhat gifted, fits right in with the new acceptance, accommodation, and development trajectory. It's not hard to say that I want it to continue. Outside of his own amazing abilities and difficult trials overcome, he may one day directly benefit should he just get worn down from the day to day battles he fights just to achieve his hard won success. It would be wonderful to have someone have his back besides his family. He carries so much himself, too, and to join others who know--the power in numbers can help his voice to be heard. What would be most wonderful would be for his gifts to be seen as outweighing his disabilities, that he could use his "special powers"! <br /><br />Thanks for continuing to try to understand, and to keep fighting the battle for Ben. He thinks you're cool. But having seen what science can do for the kids I had in my classroom, I can't just forget about those kids, either. I guess I have a foot in each camp. But the kids who need you, need you in the camp you are in.<br /><br />Confused yet? Welcome to my world! Really, I would have to say, for love of Ben, I suppose I prefer you change the world for him.Usethebrains Godgiveyouhttps://www.blogger.com/profile/05026223483117357541noreply@blogger.com