Posted by Unknown
Posted on 6:24 م
with No comments
During recent weeks the TPGA "autism experts", have done a great favor to children, like my son, who suffer from severe autism disorders. The TPGA autism wizards told parents like me who speak candidly about the deficits that limit and impair his ability to function independently in this world that we are making "monsters" of ours and all autistic children.
Our children's autism disorders, in the view of the humble yet brilliant autism experts are not really disorders, despite the title, despite the medical diagnoses that identified them as autistic. For our children's benefit we should learn to accept them as they are; autism and all.
The wise and brilliant thinking persons of the TPGA have advised us to ....... love our children. ....... wish we had thought of that ourselves. Maybe our Conor would have turned in to a warm, smiling and happy young man ..... like the Conor in these pictures.
Posted by Unknown
Posted on 1:20 ص
with No comments
"Ginger Taylor commented on the pressures on families with autism and on the greatest fear of many parents of autistic children: "That is the big question -- what happens to our child when we die. .... We understand their needs better than anyone else. It really breaks my heart hearing what happened to this family. It shouldn't be like that."" The Portland Press Herald, April 28, 2010
The recent murder and attempted murder/suicide cases involving mothers and their children with severe autism disorders are not the first such tragedies to occur. Unfortunately the same patterns are unfolding ... the refusal to seriously address the need for decent, humane residential care and treatment facilities for adults with severe autism disorders continues, the attempts by the TPGA and other ND groups like the ASAN corporation to suppress any discussion of the harsh realities of severe autism disorders and the effects on those who suffer from them and their families are continuing. No one is speaking about what has to be done to help the severely autistic live a decent life for fear of being subjected to irrational accusations that to do so is akin to excusing or justifying the killings. David H. Gorski, TPGA ideologues Emily Willingham, Shannon des Roches Rosa, ASAN corporation's Ari Ne'eman and blogger Matt Carey have all been eager to attack Sharyl Atkisson and CBS for daring to portray some of the harsh realities that affected Alex Spourdalakis and his mother.
Television (Big Bang Theory, any number of Criminal Minds police investigative type shows) and the mainstream media generally, other than CBS and Sharyl Atkisson and a few other honest conscientious reporters, will continue to portray autism as a quirky, brilliant set of personality traits, an alternative way of thinking. The majority of autistic adults and ALL severely autistic adults will continue to live in varying levels of residential care IF they are lucky. But if no one provides humane services, help and hope to the families and persons living with severe autism challenges nothing will change and the tragedies will continue. The TGPA and ASAN corporate crowd can pretend otherwise but we have to speak up now and provide service now to prevent further tragedies. We know this because it has happened before and nothing was done. Below is my blog comment from 2010 concerning the man in Gray, Maine who shot and killed himself and his 22 year old autistic son:
Dennis Hoey of The Portland Press Herald reports that a man in Gray, Maine shot and killed himself and his 22 year old autistic son yesterday:
"A father shot and killed his autistic son Tuesday at their home on Yarmouth Road before turning the rifle on himself, Maine State Police said. Cumberland County sheriff's deputies found the bodies of Daniel McLatchie, 44, and his son, Benjamin McLatchie, 22, in the family's driveway at 227 Yarmouth Road around 2:30 p.m. ... State police Sgt. Chris Harriman said ... it appeared that Daniel McLatchie was upset about what would happen to his autistic son after he and his wife died. He was a stay-at-home father, Harriman said. Daniel McLatchie's wife, Allison McLatchie, 45, was at work when the shootings happened."
Ginger Taylor the Maine author of the Adventures in Autism blog, and herself the mother of an autistic son, was interviewed and notes the lack of services including counseling services for families with autistic children. Ms Taylor commented on the pressures on families with autism and on the greatest fear of many parents of autistic children:
"That is the big question -- what happens to our child when we die. .... We understand their needs better than anyone else. It really breaks my heart hearing what happened to this family. It shouldn't be like that." Many people will undoubtedly condemn Daniel McLatchie for taking his son's life. Some will call for more services. Few, if any, will take the real action necessary to ensure that people with autism disorders like Benjamin McLatchie have a decent place to live when their parents are dead. Few, during Autism Awareness Month, and certainly not Hollywood or the main stream media giants, will look beyond the accomplishments of a few High Functioning media celebrity "autistics" to even acknowledge the existence of severely autistic persons living desperate lives in institutional facilities. Even fewer will acknowledge, without mocking or attacking them, the fears of parents obsessed with worry about what will happen to their children after they die. In the end, whether it is at the hands of a distraught parent, or from life in prison like, psychiatric hospitals, it is the most vulnerable, the most severely affected by autism disorders who suffer from lack of reality based autism awareness and support services.
Posted by Unknown
Posted on 5:33 م
with No comments
TPGA guru Shannon Des Roches Rosa (SDDR) is aghast and angry because Slate.com has dared publish "Is the Neurodiversity (ND) Movement Misrepresenting Autism?", a gentle critique by autism parent Amy S.F. Lutz, of the harmful, irrational Neurodiversity ideology embraced by the leaders of the ironically named "Thinking" Person's Guide to Autism. Self labelled as a guide for "Thinking" Persons the TPGA is harshly critical of anyone, especially autism parents, who disagree with them; anyone who portrays autism as a disorder or as a group of disorders, deficits or symptoms. In the Neurodiversity world of the TPGA the autism and related symptoms of a child must be accepted as blessings, and attempts to treat and cure those symptoms, deficits or disorders rejected, by THINKING persons. That is the true autism path according to Neurodiversity, that is the true autism path according to SDDR and the "Thinking" Person's Guide to Autism. Woe to any parent or publication that dares disagree with the self appointed arbiters of rational autism thought at the TPGA.
In a quick and angry response to the Slate article Des Roches Rosa was, to her credit, open and honest about WHY she was upset. SDRR. as reflected in the title of her response, was upset because the author of the article questioned Neurodiversity ideology: Why Did Amy S.F. Lutz Attack the Neurodiversity Movement?. The alleged attack consists of pointing out the fact that very high functioning self advocates who do not required medical treatment, or treatment of any kind, misrepresent the harsher realities of low functioning persons with autism disorders. She points out correctly that such misrepresentation, especially coupled with the DSM5 substitution of Asperger's for autism, will probably result in ever fewer autism treatment advances. Ultimately this misrepresentation and misdirection of resources will probably result in the very limited progress to date in autism treatment research being slowed even more ... to the detriment of the low functioning autistic persons most in need of progress in autism research.
The TPGA and other ND faithful will undoubtedly deluge Slate.com with demands that they be permitted an opportunity to present their replies to the Lutz article. They truly believe theirs is the one true path and voices of dissent must be silenced or at least drowned out. They believe that strangers are better placed to speak on behalf of low functioning autistic children then their parents, including me, who speak on behalf of our own children.
I have no desire to tell high functioning autistic self advocates that they must seek treatment. I have no desire to tell SDDR, or Kristina Chew referenced by SDDR, that they should seek treatment for their low functioning autistic children. I absolutely will not, though, let them speak on behalf of my son. I urge all parents who want to see treatments developed for their autistic children to continue the fight. The ND movement including the TPGA are set in their ways and will continue to try and impose their views of autism on the world. For our children's benefit we will have to continue to speak up and attempt to counter their misguided efforts.
Posted by Unknown
Posted on 11:35 ص
with No comments
As a father of a soon to be 17 year old son with severe autism disorder symptoms and profound developmental delays I understand fully when parents discuss those challenges on line. (He is also a very solid 6'1" and still growing). I do not mock other parents and accuse them of engaging in self pity, or of demonizing their children, as do many in the Neurodiversity movement including the "Thinking Persons" at the TPGA.
I understand fully what it means to try and help your adolescent son when he is hitting himself in the head in the middle of the night or when at a younger age he slipped out of the house unnoticed, crossing full parking lots and a busy main street on a busy Saturday afternoon. I understand and I communicate these challenges so that people in the world at large are not misled by the media that adores the high functioning success stories or the DSM5 teams that are now redefining the most severe intellectually disabled autistics out of the spectrum as the only co-morbid condition group specifically and expressly targeted for exclusion.
I communicate these realities to be honest to my son and present honestly the challenges he faces even as those with his symptoms are being abandoned by the inglorious drafters of the DSM5 autism spectrum disorder. To those who think otherwise I hope you have a good day.
When I feel the stresses of caring for a severely autistic, profoundly developmentally delayed son, as happens on occasion, I do not seek support on the internet. I find my joy in my son, not in his disorder but in him, the pure joy in the many good times and even the joy that comes from trying to help some one as best you can overcome the severe challenges they face.
I also, like any human being, find joy in diversions, including music. Some musicians have the ability to lift any spirit, to assist in facing any challenge. One that I have always enjoyed since the days when she was with us and blessing us with her talent and her incredible heart and soul was ... and still is ... in her music ... Janis Joplin. If you're feeling a bit worn down try a bit of Janis. I don't know for sure if it will work for you but it sure works for me.
Posted by Unknown
Posted on 5:48 ص
with No comments
Some of the people referenced in this post are affiliated with Autism Speaks. TPGA does not consider Autism Speaks an organization that benefits autistic people. -SR
I am not sure what constitutes "Thinking" at the "Thinking" Persons Guide to Autism. The above quote from "SR", Shannon Des Roches Rosa, precedes a blog comment by Carol Greenburg, a TPGA sponsored blogger at the recent IMFAR 2012 conference in Toronto. I attended IMFAR courtesy of Autism Speaks and found the conference to be an amazing experience. (Although attending courtesy of Autism Speaks my attendance still cost me considerably as I lost 3 days out of my legal practice and time I could have spent with my son Conor).
I am not totally surprised that SR would make a statement of that nature about Autism Speaks. This is after all the same individual who used tragedy to promote TPGA ideology and products:
When I hear about yet another dangerously misinformed autism parent killing their child because of autism fears, I literally fall to my knees with grief. What kind of world do we live in, if people can't bear. ........I also blame autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds, which have made unilateral demonization of autism their mission; which do no outreach whatsoever based on building positive supports and communities; and which use calculated cult-like "us or them" mindsets, attack dog techniques, misinformation, and censorship practices to keep their almost exclusively autism parent and grandparent faithfuls' righteous indignation and self-pity at a roiling boil.
It doesn't matter how much you love someone with autism -- if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics. ........this latest tragedy makes me frantic to get our TPGA book out (I'm marking up the proof right now, if there are no more hiccups with the publication process and thanks to the superhero manuscript powers of Jen Myers, it should be available in one week)."
I notice that Autism Speaks wasn't mentioned on SR's "blame" list when she wrote the above comment in response to the tragedy of a mother taking her autistic child's life. Prosecutor's in that case declined to prosecute the woman because they doubted they could prove her sanity at the time she killed her child. But that didn't stop the self referenced "squidalicious" Shannon DRR from launching her bizarre rant against parents and others who view their child's autism disorder as a ......... disorder.
Autism Speaks deserves to be criticized, like everyone else, on occasion. My oldest non-autistic son finds ample, and I mean ample, reason to criticize me and I actually get a kick out of it when he does. As the father of a severely autistic son with profound developmental delays I am not sure at times whether all those "thinkers" at the TPGA actually realize that, notwithstanding all their feel good buzzing about autism as an alternative way of thinking etc., autism is still a ..... disorder. I am a bit surprised that SR would identify Autism Speaks as one of the forces of evil and I am not sure why but I assume it is because AS helps fund cause oriented research which may some day result in treatments and cures for autism disorders.
My own frustrations with Autism Speaks arise from their attempts to be all things to all people and in the process downplaying some of the harsher realities of those most severely affected by autism disorders. In particular I believe that Autism Speaks glosses over the strong connections between Autistic Disorder and intellectual disability. Autism Speaks has, however, been a key factor in the research area in particular; both genetics and environmental autism research, although I would like to see more emphasis on the environmental research. While I disagree with some of their decisions and directions overall I believe Autism Speaks is a positive force that does benefit autistic people, particularly in raising funds for autism research. Of course as a parent of a son with severe challenges arising from his autistic disorder, and as an unthinking person, my opinion probably doesn't count for much as a guide to autism issues.
I guess it is just par for the course that if you try to please everyone you risk pleasing no one and certainly not someone who identifies so many parents and parent driven organizations as "forces of evil". I will have to start reading TPGA more closely now, not in hopes of learning anything constructive about autism disorders, but for the amusement value of seeing from day to day who SR and the TPGA have proclaimed to be not acting for the benefit of autistic people.
