Many parents and siblings of persons with low functioning autism might disagree
I received the following email from Wanda James in the Upper Ottawa Valley and post it with her consent. It is important for those who have children and siblings who are severely affected by autism disorder to speak out and be heard.
I'm so glad to have found you if only because I've been searching the web endlessly and just about ready to pull my hair out reading about all these high-functioning socially inhibited "disabled" people. It was a relief to find someone who understands the true nature of autism and what it entails.
I'm desperately trying to find some info for my mother who is caring for my severely autistic 39 year-old sister. My parents are elderly now and have no idea what will happen to Jennifer when they go. No one in the immediate family can take her-- she is very hard to handle- very self-destructive and obsessive to the point of violence if the ritual is disrupted. I've been searching for anything to give them hope that there is something out there but I can't find anything except a lot of people who are rejecting help because they don't want autism to be seen as a disadvantage. Makes me so mad. I joined a forum just to "let them have it" but I guess I ran out of steam. I've got to choose my battles carefully these days. My parents are a bit isolated on a farm in the upper Ottawa Valley in Eastern Ontario so there's not much of a network there. I just wanted to be able to give them some hope that there are programs out there. Except there aren't any. Autism Ontario and the Autistic Society seem to be lobbying the government for lower priority things, like camps for kids, publications, workshops, theatre groups, raising awareness etc.-- and nothing for actual bricks and mortar housing or the staff to put in them. They closed down the only place we had here in Ontario for severely disabled people because they deemed it too "institutional" and not efficient. They then went on to open some prototype group homes which all failed because the people living in them weren't as independent as the government assumed they'd be. Why are governments usually made up of idealistic morons? Don't get me started! : )
I'd like to know how you are doing with getting the message through to governments, etc. I would be lobbying on the Hill if I could, but I'm disabled myself with pretty severe rheumatoid arthritis. I share the sense of fear my parents have and there don't seem to be any answers. Meanwhile, autism has become a trendy thing to have-- and suddenly everybody has it if they so much as stare into space for 5 seconds. I could not believe some of the forums. One woman said she was okay in social situations, but nervous in interviews! Well, duh. Who isn't? But the danger here is the "watering down" of the impact of autism on a person's (and) family's) life. It clogs up the system, driving the numbers up which governments take into account when they are doling out assistance. In the end, the people who really need the help, don't get it. It's much the same with arthritis. Everybody I meet has it-- in a thumb, wrist, whatever. They take a Tylenol and they're fine. But I will be having chemo next month to help eradicate mine. I've got 3 artificial joints and tendon repairs. I've been on some pretty life-threatening medications. But it's hard to be taken seriously, because "hey, my aunt has arthritis, and she can still work". That's why I wrote the book Getting Up is Hard to Do: Life with Rheumatoid Arthritis- to try to get the message out there. Now I've got to fight for my sister. I don't know how to deal with this.
Hope you don't mind me writing.
If you have read this blog on occasion you will know that I try to being attention to those who are typically ignored by the mainstream media that fawns over such "autistic" persons as Ari Ne'eman, John Elder Robison, Alex Plank and Amanda Baggs ... all people of considerable intellect and high functioning abilities, people whose "autism" has little if anything in common with my severely autistic son diagnosed with autistic disorder by three pediatricians with autism expertise and assessed by an autism specialized clinical psychologist and professor emeritus. Those for whom autism is a "social" disorder, a different way of thinking or a "culture" do not face the autism reality faced by my son.
Occasionally I hear from parents or other persons with a loved one with low functioning autism who face challenges similar to my son. Like me they are all too aware of the periodic Big Media (CNN, CBC, NYT, Newsweek, New Yorker etc) anointment of "new" voices of "autism", of new "leaders" of autism. Where did Ari Ne'eman come from before the New Yorker magazine elected him as the "autism self advocate" par excellence? How did IACC, Interagency Autism Co-ordingating Committee, member Ne'eman, diagnosed as a teen with Aspergers, a university student with the social skills to hob nob with US federal and state politicians and make innumerable media appearances, acquire the knowledge and understanding of severe autistic disorders to be able to speak on behalf of people like my son?
Various autism advocacy organizations, including Autism Speaks, have accepted these high functioning, barely autistic, persons as spokespersons for all on the autism spectrum and virtually ignore the realities of those most severely affected by autism. As with media and advocacy groups so too with governments which tend to ignore the most severely affected by autism, the low functioning autistic persons who live out their lives in restricted, archaic mental institutions instead of creating positive, modernized, secure residential facilities staffed with autism trained personnel and access to badly needed professional. For many governments John Elder Robinson, former rock band musician, successful businessman, author and family man is the face of autism not Bryan Nevins who was left to swelter to death, unable to remove himself from a hot van in Pennsylvania. For many governments the face of autism is a high functioning, intelligent and articulate media star not the 50 year old autistic woman who could not speak or convey emotions or pain and who was repeatedly battered and beaten by employees at the PLUS Group Home Inc. residential care facility in Long Island.
Other parents, and members of families with severely autistic loved ones, know the difference. They know that their children are ignored by media, "autism" advocacy groups, governments, even by the American Psychiatric Association which reduced the percentage of persons with autism AND intellectual disability by expanding the definition of autism disorders in the DSM-IV to include high functioning persons with no intellectual disability. Meanwhile, the APA is continuing its efforts to ignore and exclude those with low functioning autism disorders by further expanding, and diluting, the definition of autism in the DSM-5.
The New York magazine is unlikely to visit any time soon some of the institutions and facilities like those I have visited or the one in Long Island where a 50 year old autistic woman was abused or the one in Pennsylvania where a young severely autistic man died a horrific death in a searing hot van. In all fairness though it could be difficult to get some of autistic residents in those facilities to pose elegantly for some "glam" shots for the New Yorker.
Those of us with children, siblings and loved ones are severely affected by Autism disorders must continue the fight to better their lives in the face of media, advocacy group and government indifference. We have no choice. Our severely autistic loved ones have no alternative.