What is it about this subject that generates this type of activity?
A neurological disorder that affects a person's perception (by perception I mean sensory perception as well as psychological) of and interaction with the world, thus affecting a person's development on a number of levels, autism is an enigma.
Most notable to a society bent on social propriety is the lack of social development in Autism, which is what is primarily focused on in therapy regimes. Whether the lack of social development is the actual problem in Autism or simply a reaction to more deeply felt physical and psychological discomfort remains to be scientifically proven.
Like any other disorder, disability or difference in being, Autism affects not only the autistic person, but those around him or her as well. Naturally, a great majority of non-autistic people who are affected because of their association with an autistic person, would like to see it cured.
Fair enough. They don't understand autism, they're not autistic and therefore they see it in a different light.
Now, in the case of diabetes, cancer, heart disease, strokes, liver problems, Huntington's Disease, Parkinson's disease, epilepsy, etc., those with the condition would like to see it cured. I don't know of many people with most health problems who would not want to see their particular concern cured. Who'd want to have cancer or diabetes? Not me!
Autism is a different animal altogether in that there are a great number of autistic people who do *not* want to be cured. In fact, some get pretty darned offended if the subject is brought up!
"Why?", the curebies (folks who want the cure) ask. "How could they possibly not want to be cured??"
Why indeed? That is the question, isn't it?
Naturally, a very distinct conflict can be seen here. A rift has been placed between autistic adults (or the "neurodiversity" crowd) who don't want the cure and the parents, researchers, etc. (or the "neurotypical" crowd) who do want the cure.
I read about a man who approached a non-verbal autistic person and said that what she was writing was pretty intelligent, which meant she must be able to think. Did that mean his autistic daughter could think too??
Yoy...
How does one deal with all of this??
Just today, I read an article in the New York Times about the Wright family. http://www.nytimes.com/2007/06/18/us/18autism.html?_r=2&th&emc=th&oref=slogin&oref=slogin
Just a quick overview:
A young fellow by the name of Christian Wright was diagnosed with autism back in 2004.
In response to this, his grandparents, Bob and Suzanne Wright, founded one of the most infamous organizations known to autistic kind: Autism Speaks. We've all heard of them, right? This is the group that many of us will say quite loud and proud "does not speak for us, thanks" (nor do they listen to us on most occasions...) . This is the group that claims to be speaking for autism, but refuse to listen when autism actually does speak to them! (By that, I mean Autistics speaking to them and they're not listening)
Autism Speaks is what can be called a "Mega Charity", which focuses on raising money and awareness to curing the "dreaded neurological disorder" (per the article which I'll be posting at the end per my usual process).
These two founders believe that autism is genetic and intensive [behavioural] therapy is the way to go.
Here's the kicker. Their daughter, Katie, the mother of Christian, sides with the folks who think vaccines or certain environmental issues are the cause of autism. She went on the Oprah Show to voice this opinion...which naturally led to quite the little rift in the family!
Now, it's a wonderful family feud with the whole genetic vs. vaccine, behavioural therapy vs addressing physical problems at the centre of it all.
I wonder if anyone has asked Christian what he thinks of all of this?
Stupid question...of course not. He's autistic. What would he know? What would any of us know?
This morning I was sent another link to a blog and a 7 year old autistic child had plenty to say about cures:
http://club166.blogspot.com/2007/06/out-of-mouths-of-babes.html
So, Liz was walking thru the local mall the other day, and they passed the central fountain (which has always been a big hit with Buddy Boy since he was at least 6 months old-even after sitting there watching it for 30 minutes he would scream when we left it). On this day the fountain was spewing pink water (which was just fine with Sweet Pea, as she loves anything pink).The pink water was a marketing thing for the Susan G. Komen race for the cure event that is coming to our town soon.
In explaining the event to Buddy Boy, she explained that everyone doesn't always run, and that many walk, much like the "Autism Walk" that we have taken part in in the past.
Well Buddy Boy put together the notions of "curing breast cancer" and "autism walk" together in his brain right away, and even though Liz never said anything about curing autism, he said,
"I don't want to be cured. I'm not sick."
He then seemed to infer that the Autism Walk money might be used to "cure" autism, because he stated,
"If we go on the Autism Walk again, we can just take their money. I am not sick."
Later, when Liz was in the car with the kids, listening to the same National Public Radio (NPR) story on autism that Autism Diva was, one of the participants referred to autism as a disease.
Immediately Buddy Boy piped up from the back seat,
"It's not a disease!"
Liz agreed, saying that autism is actually a disorder, to which Buddy Boy responded,
"It's not a disorder, either! Autism makes me special!"
To which Liz could only agree.Now I know that what a 7 year old puts forth as his opinion cannot be reliably said to be his opinion alone. Certainly a lot of what he says are just things he's heard. But while we certainly try to keep a positive spin on autism, we don't usually discuss autism politics or controversies in front of him (we're much more focused on discussing things like the proper channeling of aggression).
So when I heard this I was glad that Buddy Boy had what I considered a very healthy view of things, and seemed to be integrating his own feelings on the subject with things he's heard from us and others.
On top of that, all I can say is,"That's my boy!"
Way to go, Buddy Boy!
I've seen all sides of the debates going around:
Cure:
- Autistics want acceptance and do not want the focus to be on "cure". They'd rather see some focus on accepting them for who they are, helping them with what they need help with and looking at appropriate treatment options (i.e.: not ones that don't do much more than make a child "act normal").
- Parents want the cure...any cure, as long as it makes their child normal.
Causes:
- The mercury thing - Vaccines, environment, etc. It's been debunked, etc. Vaccines do not cause autism, yet it looks that way because autistic symptoms usually start showing up at around the same age. So, there's an argument which is a sticky one.
- The Genetic thing - While, I do tend to side with the genetics people only in the fact that I know it runs in my family, I do not agree with the other direction this one can take: screening for autism and preventing an autistic child from being born (Eugenics).
Treatments:
- The treatment options - ABA/IBI, Floortime, Son Rise, chelation, diets, etc., etc., etc. Everyone has their own opinions about them. Some vehemently advocate for them (see most charities and their begging for ABA money); others oppose them.
Funding:
- The funding argument usually surrounds the very expensive treatments such as ABA/IBI, etc. Almost all of the treatments for autism are not covered under health care plans, so funding is a big issue which goes up to the government level.
- Funding also surrounds research of all types as well, which has its own set of arguments.
So, what's the solution?
Who's right?
Who's wrong?
What's the answer?
How do we make everyone happy?
Looking at what has been written by autistic people all over the world (getting the Truth Out, autistics.org, Please Don't Mourn for Us by Jim Sinclair, etc.) when did the focus stop being on what is right for autistic people themselves??
Looking at how many autistic people are excluded from having an opinion with Autism societies and charities, why are these people not seeing that we autistics have something to say and contribute?
And if they do see it, why are they not doing something about it?
Autistics are autistic. Autistics, in my opinion, would know far more than any parent or professional about what being autistic is like, right? Autistics may not know *everything*, but they do know what they are going through far better than anyone else.
Would it not make sense, then, to perhaps listen to what lots of autistics are saying rather than just relegating them to the back burner and patronizing them? It's not like autistics are not saying anything!
For years, many of the core personal and medical issues for each person have been largely ignored based on the way the professionals see autism. The stomach problems, the sensory issues, the constant strain on a person's mind and body...none of this is looked at. In fact, many of these so-called therapies exacerbate these core issues.
To most of the professionals out there, autism is still strictly behavioural...something that can be helped with some behavioural modification.
What would I like to see?
I would like to see more legitimate studies done on this topic and the attitudes of many parents and professionals changed to realize just what is going on inside their children or clients.
This may involve something a little uncomfortable for those NT therapists and psychologists - changing their outlook on something. (And they call us rigid)
For myself, I see the connection because when things are bad or I'm overloaded, I feel very stressed out and, dare I say it? - Traumatized. I know how I feel. I know that it's not going to stop.
Others know how they feel. But for some reason, the medical community refuses to acknowledge it if the child hasn't been abused or traumatized in a more "conventional" way (war, abuse, disaster, etc.) . For some reason, 40 hours of intensive behaviour modification is what is considered "medically necessary" by most societies, parents, etc.
Forcing a child to pretend to be normal doesn't help. You may see an autistic child acting normal and think it's all ok, but it's not!
Would you treat an abused or otherwise traumatized child that way? Probably not for fear they'd just get even more traumatized!
Why is is this ok for autistic kids?
In my opinion, it all boils down to that "theory of mind" concept working both ways. When people start showing a little empathy toward autistics and properly addressing the actual *why* behind the behaviours, I think things may turn out to be better for all involved.
Autistics are expected to know how NT's feel. What about autistics' feelings? Is it not just as important for NT's to know how autistics feel? Do we not have feelings?
If we look at the earlier story about the man who was shocked that an autistic could think...that question is easily answered: apparently, we don't have feelings, nor do we have any valid opinion.
As I've heard from so many NT's and communication seminars: "Communication works both ways. It is not a one way street."
Perhaps it is time to start opening the dialogue both ways and doing some research into this - one of those core problems I always mention.
Many autistics say they would not want to be cured because they'd lose their creativity, their abilities, etc.
I agree in that respect. I would not want to lose my photographic memory, my ability to stay cool under stress, my ability to instantly go into a meditative state and my ability to logically think things through.
I would, however, like my stomach problems to be fixed and my sensory issues to be dealt with so they are not bugging me.
I would also like to be able to go through a day with the feeling that my stress is accumulating to the point where I feel like I'm going to snap because I spend my day being someone I'm not.
I would like to really be able to relax.
I would like help with the things I actually need help with.
I would like very much if my credibility at a job or something didn't go down the toilet because it gets out that I'm on the autism spectrum.
I'd like to stop being seen as something that tears families apart, destroys people, steals children or is an epidemic. (If anything tears families apart, it is their lack of acceptance and their pet theories not working)
I would like to be heard and listened to.
I would like to be treated appropriately, with respect and with empathy.
I would like for others to be more open as to the different possibilities.
Is that too much to ask?
Perhaps, but I'm asking anyway...
Autism Debate Strains a Family and Its Charity
By JANE GROSS and STEPHANIE STROM Published: June 18, 2007
A year after their grandson Christian received a diagnosis of autism in 2004, Bob Wright, then chairman of NBC/Universal, and his wife, Suzanne, founded Autism Speaks, a mega-charity dedicated to curing the dreaded neurological disorder that affects one of every 150 children in America today.
The Wrights' venture was also an effort to end the internecine warfare in the world of autism - where some are convinced that the disorder is genetic and best treated with intensive therapy, and others blame preservatives in vaccinations and swear by supplements and diet to cleanse the body of heavy metals.
With its high-powered board, world-class scientific advisers and celebrity fund-raisers like Jerry Seinfeld and Paul Simon, the charity was a powerful voice, especially in Washington. It also made strides toward its goal of unity by merging with three existing autism organizations and raising millions of dollars for research into all potential causes and treatments. The Wrights call it the "big tent" approach.
But now the fissures in the autism community have made their way into the Wright family, where father and daughter are not speaking after a public battle over themes familiar to thousands of families with autistic children.
The Wrights' daughter, Katie, the mother of Christian, says her parents have not given enough support to the people who believe, as she does, that the environment - specifically a synthetic mercury preservative in vaccines - is to blame. No major scientific studies have linked pediatric vaccination and autism, but many parents and their advocates persist, and a federal "vaccine court" is now reviewing nearly 4,000 such claims.
The Wright feud has played out in cyberspace and spilled into Autism Speaks, where those who disagree with Katie Wright's views worry that she is setting its agenda. And the family intent on healing a fractured community has instead opened its old wounds and is itself riven.
The rift began in April when Katie put herself squarely on the side of "The Mercurys," as that faction is known, on Oprah Winfrey, where she described how her talkative toddler turned unresponsive and out-of- control after his vaccines and only improved with unconventional, and untested, remedies.
In a Web interview with David Kirby, author of the controversial book, "Evidence of Harm: Mercury in Vaccines and the Autism Epidemic," Ms. Wright lashed out at the "old guard" scientists and pioneering autism families. If the old-timers are unable to let go of "failed strategies," she said, they should "step aside" and let a new generation "have a chance to do something different with this money" that her parents' charity was dispensing.
Complaints poured in from those who said Ms. Wright's remarks were denigrating.
So, in early June, Bob and Suzanne Wright repudiated their daughter on the charity's Web site. "Katie Wright is not a spokesperson" for the organization, the Wrights said in a brusque statement. Her "personal views differ from ours." The Wrights also apologized to "valued volunteers" who had been disparaged. Told by friends how cold the rebuke sounded, Mrs. Wright belatedly added a line saying, "Katie is our daughter, and we love her very much."
Ms. Wright called the statement a "character assassination." She said she had not spoken to her father since. Ms. Wright continues to spend time with her mother, but said they had not discussed the situation.
"I totally respect if her feelings were hurt," Mrs. Wright said. "But a lot of feelings were hurt. A lot."
Now other autism families who hoped to put their differences aside are shouting at each other in cyberspace. "Our struggle is not and should not be against each other," said Ilene Lainer, the mother of an autistic child and the executive director of the New York Center for Autism.
The big tent approach of Autism Speaks appealed to Mel Karmazin, chief executive of Sirius Radio and an early board member and contributor. "If you look at what projects Autism Speaks has funded, we are agnostic," he said.
Mr. Karmazin, who also has an autistic grandson, added, "I never wanted to look my grandson in the eye and tell him I'm taking just one viewpoint or that I think it had to be genetic."
Bob and Suzanne Wright are sympathetic to Katie's plight, having witnessed Christian's sudden regression and his many physical ailments, mostly gastrointestinal, which afflict many autistic children.
The boy did not respond to behavioral therapies, the Wrights said, leading to their daughter's desperate search for anything that might help. "When you have that sense of hopelessness, and don't see results, you do things that other people think is too risky," Mr. Wright said. "The doctors say, 'Wait for the science.' But you don't have time to wait for the science."
The Wrights agreed to disagree with most of Katie's views. But her public attack on other parents crossed a line, Mr. and Mrs. Wright said in separate telephone interviews.
"I know my daughter feels deeply that not enough is being done," Mr. Wright said. "The larger issue is we want to be helpful to everyone, and to do that we need information, data, facts."
Some in the traditional scientific community worry that Autism Speaks has let Ms. Wright's experience shape its agenda. She scoffs at the notion. Her parents, she said in a telephone interview, are "courageous" and "trying very hard," but have been slow to explore alternative approaches.
"You can say it and say it and say it," she said. "Show me evidence that they're actively researching vaccines."
The Wright family's fight has captured the attention of the bloggers, who are now questioning everything from its office lease to how it makes grants. The charity rebutted the bloggers' accusations of improprieties in interviews with The New York Times, which examined its IRS forms and read relevant sections to Gerald A. Rosenberg, former head of the New York State attorney general's charities bureau. He said nothing he reviewed was untoward.
The most distinctive aspect of Autism Speaks is its alliance with Autism Coalition for Research and Education, an advocacy group; the National Alliance for Autism Research, devoted to scientific research into potential genetic causes, with high standards for peer review; and Cure Autism Now, which has championed unconventional theories and therapies.
Which wing of the merged charity is ascendant? Some establishment scientists and parents now fear it is The Mercurys. They point to Cure Autism Now's having more seats than the National Alliance does on the board of directors and the growing number of research projects that focus on environmental causes.
At a recent benefit gala, featuring Bill Cosby and Toni Braxton, some in the audience were surprised when Mr. Wright announced that all proceeds would go toward environmental research, which generally includes vaccines.
But a list of current research grants on the Autism Speaks Web site suggests that the Wrights, while walking a fine line, are leaning toward genetic theories.
From 2005 to 2007, the charity sponsored $11.5 million in grants for genetic research (compared with $5.9 million by all its partners between 1997 and 2004). It sponsored $4.4 million in environmental research (down from $6 million granted by the partners in the previous seven years). And many of the environmental studies explore what is known as the double-hit hypothesis: That the genes for autism may be activated in some children by exposure to mercury or other neuro- toxins.
Bob and Suzanne Wright say their two-year immersion into the world of autism has been an eye-opener, especially the heated arguments worthy of the Hatfields and McCoys.
Mrs. Wright is aware that the marriage of the Alliance and Cure Autism Now, for instance, could fall apart over opposing ideologies. "I'm not going to let it," she said. "The truth will rise to the top."
She is also aware that the rift in her own family needs repair: On Friday, her daughter posted a message on an autism Web site questioning their "personal denouncement of me."
Yet Mrs. Wright is confident that "we'll work our way through this." Autism, she said "has done enough damage to my family. I'm not letting it do any more."
