Guest guest Posted April 28, 2011 Report Share Posted April 28, 2011 My daughter Amy wrote this letter to PBS concerning the NewsHour service "Autism Now". She asked me to share it. Regards, Ven Sequenzia President Autism Society of America State of Florida Chapter Subject: letter to PBS Amy's response to MacNeil claims that issues facing autistic adults are not "an urgent issue†and not important enough to merit coverage (in his PBS NewsHour's series "Autism Now") Letter sent to PBS NewsHour Mr. MacNeil fails to include autistic adults in his series “Autism Now†and fails again when trying to explain his first mistake. His assumptions about me and about others autistic adults contradicts his own statement about each individual being unique. The urgency of educating and providing clarification about autism is equally, if not more, important for the adult autistic community as it is for the autistic children. I, for example, cannot have a job; I need help with every single thing I do, from showering to eating to going from point A to point B; I can, however, think by myself but being non verbal, I need the assistance of someone to set up my communication device and stay with me while I type; I need someone to keep others engaged while I take small pauses in the conversation and try to regain focus. I am not high functioning but I want to be accepted and I want to be heard. According to Mr. MacNeil’s statements, he seems to believe that because of the way I look and because of my needs I should be pitied and that I am causing deep pain to my family. This is not true and it shows Mr. MacNeil’s lack of vision Services for my communication needs are not available where I live and I am lucky to have, for now, dedicated and selfless friends. There is also the question of funding since my needs are high, my family is not wealthy and I cannot move around looking for better opportunities – again, the funding issue. The risk of me losing all the help I have and be institutionalized is never completely gone. There is no will from policy makers to recognize that people like me need special care but also wish to fully participate in the community. So, yes, I think that talking about those issues is urgent as it is the need to stop saying how autism destroys families and how a cure is needed. Autistic children will become autistic adults and their future will be better if people start to practice and work towards instead of insisting on stereotypes that are so harmful to the goal of a more integrated life for all autistic people Sincerely, Amy Sequenzia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2011 Report Share Posted April 28, 2011  It is my opinion news figures such as him and other leaders in awareness are temid of adults becuase of groups like ASAN. ASA is a very good organization with a long history of balance and inclusion of diversity of thinking. Young letter to PBS Amy's response to MacNeil claims that issues facing autistic adults are not "an urgent issue†and not important enough to merit coverage (in his PBS NewsHour's series "Autism Now") Letter sent to PBS NewsHour Mr. MacNeil fails to include autistic adults in his series “Autism Now†and fails again when trying to explain his first mistake. His assumptions about me and about others autistic adults contradicts his own statement about each individual being unique. The urgency of educating and providing clarification about autism is equally, if not more, important for the adult autistic community as it is for the autistic children. I, for example, cannot have a job; I need help with every single thing I do, from showering to eating to going from point A to point B; I can, however, think by myself but being non verbal, I need the assistance of someone to set up my communication device and stay with me while I type; I need someone to keep others engaged while I take small pauses in the conversation and try to regain focus. I am not high functioning but I want to be accepted and I want to be heard. According to Mr. MacNeil’s statements, he seems to believe that because of the way I look and because of my needs I should be pitied and that I am causing deep pain to my family. This is not true and it shows Mr. MacNeil’s lack of vision Services for my communication needs are not available where I live and I am lucky to have, for now, dedicated and selfless friends. There is also the question of funding since my needs are high, my family is not wealthy and I cannot move around looking for better opportunities – again, the funding issue. The risk of me losing all the help I have and be institutionalized is never completely gone. There is no will from policy makers to recognize that people like me need special care but also wish to fully participate in the community. So, yes, I think that talking about those issues is urgent as it is the need to stop saying how autism destroys families and how a cure is needed. Autistic children will become autistic adults and their future will be better if people start to practice and work towards instead of insisting on stereotypes that are so harmful to the goal of a more integrated life for all autistic people Sincerely, Amy Sequenzia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2011 Report Share Posted April 28, 2011 Thank you so much for sharing this very touching letter. I pray every night for the sons and daughters who are struggling with this terrible disability. As well as the caretakers and family members that are involved. I could not contain my tears. Thank you and may God Bless you and your family. Aly Subject: Fwd: letter to PBSTo: VSequenzia@...Date: Thursday, April 28, 2011, 1:23 PM My daughter Amy wrote this letter to PBS concerning the NewsHour service "Autism Now". She asked me to share it. Regards, Ven Sequenzia President Autism Society of America State of Florida Chapter Subject: letter to PBS Amy's response to MacNeil claims that issues facing autistic adults are not "an urgent issue†and not important enough to merit coverage (in his PBS NewsHour's series "Autism Now") Letter sent to PBS NewsHour Mr. MacNeil fails to include autistic adults in his series “Autism Now†and fails again when trying to explain his first mistake. His assumptions about me and about others autistic adults contradicts his own statement about each individual being unique. The urgency of educating and providing clarification about autism is equally, if not more, important for the adult autistic community as it is for the autistic children. I, for example, cannot have a job; I need help with every single thing I do, from showering to eating to going from point A to point B; I can, however, think by myself but being non verbal, I need the assistance of someone to set up my communication device and stay with me while I type; I need someone to keep others engaged while I take small pauses in the conversation and try to regain focus. I am not high functioning but I want to be accepted and I want to be heard. According to Mr. MacNeil’s statements, he seems to believe that because of the way I look and because of my needs I should be pitied and that I am causing deep pain to my family. This is not true and it shows Mr. MacNeil’s lack of vision Services for my communication needs are not available where I live and I am lucky to have, for now, dedicated and selfless friends. There is also the question of funding since my needs are high, my family is not wealthy and I cannot move around looking for better opportunities – again, the funding issue. The risk of me losing all the help I have and be institutionalized is never completely gone. There is no will from policy makers to recognize that people like me need special care but also wish to fully participate in the community. So, yes, I think that talking about those issues is urgent as it is the need to stop saying how autism destroys families and how a cure is needed. Autistic children will become autistic adults and their future will be better if people start to practice and work towards instead of insisting on stereotypes that are so harmful to the goal of a more integrated life for all autistic people Sincerely, Amy Sequenzia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 You're welcome and thank you for your kind words. I have forwarded to Amy. Regards, Ven Sequenzia President Autism Society of America State of Florida Chapter letter to PBS Amy's response to MacNeil claims that issues facing autistic adults are not "an urgent issue†and not important enough to merit coverage (in his PBS NewsHour's series "Autism Now") Letter sent to PBS NewsHour Mr. MacNeil fails to include autistic adults in his series “Autism Now†and fails again when trying to explain his first mistake. His assumptions about me and about others autistic adults contradicts his own statement about each individual being unique. The urgency of educating and providing clarification about autism is equally, if not more, important for the adult autistic community as it is for the autistic children. I, for example, cannot have a job; I need help with every single thing I do, from showering to eating to going from point A to point B; I can, however, think by myself but being non verbal, I need the assistance of someone to set up my communication device and stay with me while I type; I need someone to keep others engaged while I take small pauses in the conversation and try to regain focus. I am not high functioning but I want to be accepted and I want to be heard. According to Mr. MacNeil’s statements, he seems to believe that because of the way I look and because of my needs I should be pitied and that I am causing deep pain to my family. This is not true and it shows Mr. MacNeil’s lack of vision Services for my communication needs are not available where I live and I am lucky to have, for now, dedicated and selfless friends. There is also the question of funding since my needs are high, my family is not wealthy and I cannot move around looking for better opportunities – again, the funding issue. The risk of me losing all the help I have and be institutionalized is never completely gone. There is no will from policy makers to recognize that people like me need special care but also wish to fully participate in the community. So, yes, I think that talking about those issues is urgent as it is the need to stop saying how autism destroys families and how a cure is needed. Autistic children will become autistic adults and their future will be better if people start to practice and work towards instead of insisting on stereotypes that are so harmful to the goal of a more integrated life for all autistic people Sincerely, Amy Sequenzia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 What a beautiful and sincere letter. You must be very proud - both of you. To: sList Sent: Fri, April 29, 2011 9:12:09 AMSubject: Re: Fwd: letter to PBS You're welcome and thank you for your kind words. I have forwarded to Amy. Regards, Ven Sequenzia President Autism Society of America State of Florida Chapter letter to PBS Amy's response to MacNeil claims that issues facing autistic adults are not "an urgent issue†and not important enough to merit coverage (in his PBS NewsHour's series "Autism Now") Letter sent to PBS NewsHour Mr. MacNeil fails to include autistic adults in his series “Autism Now†and fails again when trying to explain his first mistake. His assumptions about me and about others autistic adults contradicts his own statement about each individual being unique. The urgency of educating and providing clarification about autism is equally, if not more, important for the adult autistic community as it is for the autistic children. I, for example, cannot have a job; I need help with every single thing I do, from showering to eating to going from point A to point B; I can, however, think by myself but being non verbal, I need the assistance of someone to set up my communication device and stay with me while I type; I need someone to keep others engaged while I take small pauses in the conversation and try to regain focus. I am not high functioning but I want to be accepted and I want to be heard. According to Mr. MacNeil’s statements, he seems to believe that because of the way I look and because of my needs I should be pitied and that I am causing deep pain to my family. This is not true and it shows Mr. MacNeil’s lack of vision Services for my communication needs are not available where I live and I am lucky to have, for now, dedicated and selfless friends. There is also the question of funding since my needs are high, my family is not wealthy and I cannot move around looking for better opportunities – again, the funding issue. The risk of me losing all the help I have and be institutionalized is never completely gone. There is no will from policy makers to recognize that people like me need special care but also wish to fully participate in the community. So, yes, I think that talking about those issues is urgent as it is the need to stop saying how autism destroys families and how a cure is needed. Autistic children will become autistic adults and their future will be better if people start to practice and work towards instead of insisting on stereotypes that are so harmful to the goal of a more integrated life for all autistic people Sincerely, Amy Sequenzia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 Ven....thank you for sharing this inspirational letter. And please thank your daughter for her insightful and emotional words. My son will turn eighteen next week.....and I fear what the future holds for him when I am gone. With the narrow minded thinking, lack of community supports, state and federal funding, it seems that individuals like my son and your daughter will face a dismal future in our society. I pray every day that I'm wrong. Please give your daughter an extra hug from a mom out there who appreciates her sincerity. Much love to you and yours, Lesli (Dylan's Mom....<3 ) letter to PBS Amy's response to MacNeil claims that issues facing autistic adults are not "an urgent issue†and not important enough to merit coverage (in his PBS NewsHour's series "Autism Now") Letter sent to PBS NewsHour Mr. MacNeil fails to include autistic adults in his series “Autism Now†and fails again when trying to explain his first mistake. His assumptions about me and about others autistic adults contradicts his own statement about each individual being unique. The urgency of educating and providing clarification about autism is equally, if not more, important for the adult autistic community as it is for the autistic children. I, for example, cannot have a job; I need help with every single thing I do, from showering to eating to going from point A to point B; I can, however, think by myself but being non verbal, I need the assistance of someone to set up my communication device and stay with me while I type; I need someone to keep others engaged while I take small pauses in the conversation and try to regain focus. I am not high functioning but I want to be accepted and I want to be heard. According to Mr. MacNeil’s statements, he seems to believe that because of the way I look and because of my needs I should be pitied and that I am causing deep pain to my family. This is not true and it shows Mr. MacNeil’s lack of vision Services for my communication needs are not available where I live and I am lucky to have, for now, dedicated and selfless friends. There is also the question of funding since my needs are high, my family is not wealthy and I cannot move around looking for better opportunities – again, the funding issue. The risk of me losing all the help I have and be institutionalized is never completely gone. There is no will from policy makers to recognize that people like me need special care but also wish to fully participate in the community. So, yes, I think that talking about those issues is urgent as it is the need to stop saying how autism destroys families and how a cure is needed. Autistic children will become autistic adults and their future will be better if people start to practice and work towards instead of insisting on stereotypes that are so harmful to the goal of a more integrated life for all autistic people Sincerely, Amy Sequenzia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011  I've been worried about this kinds of things all day. However ASAN calling him ignorant is threatening to a resultion to these concerns. I would never call anyone ignorant. I think the advocacy actually is threatening to me and others rather then helpfull. Young letter to PBS Amy's response to MacNeil claims that issues facing autistic adults are not "an urgent issue†and not important enough to merit coverage (in his PBS NewsHour's series "Autism Now") Letter sent to PBS NewsHour Mr. MacNeil fails to include autistic adults in his series “Autism Now†and fails again when trying to explain his first mistake. His assumptions about me and about others autistic adults contradicts his own statement about each individual being unique. The urgency of educating and providing clarification about autism is equally, if not more, important for the adult autistic community as it is for the autistic children. I, for example, cannot have a job; I need help with every single thing I do, from showering to eating to going from point A to point B; I can, however, think by myself but being non verbal, I need the assistance of someone to set up my communication device and stay with me while I type; I need someone to keep others engaged while I take small pauses in the conversation and try to regain focus. I am not high functioning but I want to be accepted and I want to be heard. According to Mr. MacNeil’s statements, he seems to believe that because of the way I look and because of my needs I should be pitied and that I am causing deep pain to my family. This is not true and it shows Mr. MacNeil’s lack of vision Services for my communication needs are not available where I live and I am lucky to have, for now, dedicated and selfless friends. There is also the question of funding since my needs are high, my family is not wealthy and I cannot move around looking for better opportunities – again, the funding issue. The risk of me losing all the help I have and be institutionalized is never completely gone. There is no will from policy makers to recognize that people like me need special care but also wish to fully participate in the community. So, yes, I think that talking about those issues is urgent as it is the need to stop saying how autism destroys families and how a cure is needed. Autistic children will become autistic adults and their future will be better if people start to practice and work towards instead of insisting on stereotypes that are so harmful to the goal of a more integrated life for all autistic people Sincerely, Amy Sequenzia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 I don't think the word ignorant was threatening. I think she was simply stating a fact, that Mr. MacNeil had not properly studied a topic for which he had expressed an opinion. While I can't speak for the writer, I believe that she used the word to inform him that his lack of research may have led to his presenting information that would give people the wrong idea or misconceptions about the autistic community. I think the letter was very good and very helpful. I don't think it was threatening or damaging to the cause of autism. I do agree that some groups, such as Autism Speaks tend to do damage to the cause of the autistic community. Glenda > > > > Subject: Fwd: letter to PBS > To: VSequenzia@... > Date: Thursday, April 28, 2011, 1:23 PM > > > > My daughter Amy wrote this letter to PBS concerning the NewsHour service " Autism Now " . She asked me to share it. > > > Regards, > Ven Sequenzia > President > Autism Society of America > State of Florida Chapter > > > > > Subject: letter to PBS > > Amy's response to MacNeil claims that issues facing autistic adults are not " an urgent issue†and not important enough to merit coverage (in his PBS NewsHour's series " Autism Now " ) > Letter sent to PBS NewsHour > > > Mr. MacNeil fails to include autistic adults in his series “Autism Now†and fails again when trying to explain his first mistake. His assumptions about me and about others autistic adults contradicts his own statement about each individual being unique. The urgency of educating and providing clarification about autism is equally, if not more, important for the adult autistic community as it is for the autistic children. > I, for example, cannot have a job; I need help with every single thing I do, from showering to eating to going from point A to point B; I can, however, think by myself but being non verbal, I need the assistance of someone to set up my communication device and stay with me while I type; I need someone to keep others engaged while I take small pauses in the conversation and try to regain focus. I am not high functioning but I want to be accepted and I want to be heard. According to Mr. MacNeil’s statements, he seems to believe that because of the way I look and because of my needs I should be pitied and that I am causing deep pain to my family. This is not true and it shows Mr. MacNeil’s lack of vision > Services for my communication needs are not available where I live and I am lucky to have, for now, dedicated and selfless friends. There is also the question of funding since my needs are high, my family is not wealthy and I cannot move around looking for better opportunities †" again, the funding issue. The risk of me losing all the help I have and be institutionalized is never completely gone. There is no will from policy makers to recognize that people like me need special care but also wish to fully participate in the community. > So, yes, I think that talking about those issues is urgent as it is the need to stop saying how autism destroys families and how a cure is needed. Autistic children will become autistic adults and their future will be better if people start to practice and work towards instead of insisting on stereotypes that are so harmful to the goal of a more integrated life for all autistic people > Sincerely, > Amy Sequenzia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 Representing people with autism and developmental disabilities is a job that requires the understanding of the gravity of the responsability. The word ignorant is highly unprofessional, confrontational and harmfull. Perhaps he as a grandfather was frustrated with groups like ASAN being confrontational and said remarks while untrue were responsive toward the tact of these types of groups. The ASAN has a history and especially it's followers of name calling, put downs and harsh confrontation. I believe nice, friendly and deplomantic is responsable. Again, I want nothing to do with ASAN and in my part of the world I take my job very seriously. As I know my behaviours can alter the outcomes of others socially and politically. It's to bad that drama and confrontation gets attention. I've spent years establishing the advocacy I do not with drama and antagonization but with something more in the middle. Also I know of no selfadvocates that call people ignorant but the few professionals I knew that said that word were talked to and the issue resolved. I and others feel threatened by tactics which seemingly create ill effect and hard feelings. Peoples quality of lives, hope and futures may rely on simple issues such as these which create good vs. bad feelings. Young Re: Fwd: letter to PBS I don't think the word ignorant was threatening. I think she was simply stating a fact, that Mr. MacNeil had not properly studied a topic for which he had expressed an opinion. While I can't speak for the writer, I believe that she used the word to inform him that his lack of research may have led to his presenting information that would give people the wrong idea or misconceptions about the autistic community. I think the letter was very good and very helpful. I don't think it was threatening or damaging to the cause of autism. I do agree that some groups, such as Autism Speaks tend to do damage to the cause of the autistic community. Glenda Quote Link to comment Share on other sites More sharing options...
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