Just some more random thinking on PR and what I want to do one day

It's been a bit of a dilemma for me these past few years, being torn between being proud of who I am, being happy to do speeches and such at conferences, or even give interviews in the paper, and worrying about a general public, including employers who know little about autism save for what they read in the papers (and we all know how the media portrays autism, don't we?).

Most of the problem for me is what I call the "bad PR" or "bad press" about autism. Sure, it's hard for families, and even harder for those of us on the spectrum, but the negative words used with autism "destroyer of families", "epidemic", "fate worse than death", "abductor of children", "disease", "behavioural problem" don't make it any easier for us to get ahead if we can and want to!

There are two major ways to make money providing goods or services in this world:

1. Provide a product or service that people need or want really bad and they will buy it, or buy into it. The trick is to gear it at the people, making it look that like they absolutely need this product or service. (Look at things like ABA - they say it's 'medically necessary' and make tons of money off of parents who are not medical professionals and are usually facing the facts about autism for the first time making them very vulnerable!)

2. If the people do not directly need your service, but you need to raise money to provide it to those you think do need it (non-profit societies mostly), then you need to target the public where it hurts: their emotions.

You need to make whatever you're raising money for look so bad that people will feel sorry and throw money your way. You need to use words that trigger emotions like "devastating", "tragic", "epidemic", "terrible disease" and "fate worse than death".

You need to paint a bleak picture for the public and then make it look like you have the answer or the cure. It will certainly make you money, but what of those you are targeting your service at? What sort of picture are you painting for those who may not need your services as much but get painted in the same negative way? In this case, autistics who are able to live independently and work? How easy is it going to be for them to live their independent life and work their meaningful career with that sort of negativity being spread around?

Not all of us are unable to work. Not all of us need extra services or funding, yet we still fall into the same category and have to live with working twice as hard to prove that "we're not all like the people the societies and parents are portraying".

I am more than able to work and I enjoy doing it. I'd go nuts if I couldn't work! I've been doing it since I was 13 and I will work for as long as I can. With the shadow of the negative press hanging over me, that makes it hard me to get ahead. Instead, I've had to prove myself. This I've done with things like Toastmasters, serving in leadership roles and just proving myself worthy at work.

What sucks is that I've had to work way harder than my coworkers to do this because there's the "pretending to be normal" factor, plus having to work twice as hard to prove that I am more than capable to do my job and work my way up to middle management. I work best in middle management, because I have more control over my situation and do what I do best, which is helping other people do their best and get ahead. I don't like being someone's grunt.

It is, of course, against the law in most countries to deny someone work based on a "disability" of any sort. However, most employers circumvent that by just not calling you for an interview in the first place if they know you are disabled.

In my case, I changed my first and last name and have an excellent resume. Now, I don't get equated with the "A" word when looking for work, and this has helped immensely.

Eventually, I will have earned the appropriate degrees (I'm in University now) to start up a practice as a psychologist and provide the one service that seems to be seriously lacking: service to teenagers and adults on the autistic spectrum who have spent a lifetime being told how defective, tragic and worthless they are.

I want to be able to provide a diagnosis to those who need it; provide counseling or coaching with a strictly autistic focus (rather than trying to use NT counseling tactics, which is pointless to say the least); help get the right services for someone who is having hard time getting them, etc.

I don't want to cure anyone or force them to pretend to be normal like other "therapists" and such have done in the past; but I do want to help people find value in their lives, work with whatever is bothering them and help them create the life they want or need for themselves on their own terms. I would like to see people going out in the world, knowing and accepting who they are and succeeding in the way they consider success anyway.

I want to help heal the damage done by most childhood therapies and help people empower themselves so they can at least have as happy an adulthood as they can. All people should have happiness in their lives, and be able to access that happiness.

No person should ever grow up feeling worthless, or want to kill themselves because they've been led to believe they are defective their whole lives. I've been there. I've wished there was someone who could provide this sort of service to me.

I may be completely off base, but I see a need and I want to fill it. We'll see where life takes me in that regard.

That is my dream for a meaningful career.

A "Life Without Autism" - would you be willing to kill for it?

Karen McCarron was willing to and she did...

Before I continue on with this piece, I would warn those who are easily disturbed or do not want to see the dark side of parenting an autistic child to stop reading right now.

I believe in balance and believe strongly in pursuing and speaking the "truth against the world". Sometimes the truth hurts, but it needs to be seen.

Not many truths hurt more than the truth that there is a hatred felt by parents out there...a hate that can and has driven some to kill.

To see a list of autistic people killed at the hands of their caregivers of all sorts, please visit this website http://www.geocities.com/growingjoel/murder.html for their names and stories. The site has not been updated lately, but it is still a good resource.

According to this news article (Posted in full at the end of this post) http://www.pjstar.com/php/index.php?/news/pekin_mother_wants_videotaped_confession_suppressed/,
Karen was drivin to suffocate her autistic daughter, Katie, because Katie was "detached" (mentally disconnected). Katie was a "tough nut to crack" and Karen had thought about killing her on previous occasions.

Karen killed her daughter on May 13, 2006 by suffocating her with a plastic bag.

Her one main reason to kill an innocent child who did not ask to be born autistic?

Karen wanted "a life without autism". No thought was given to what her daughter thought about being autistic. Karen did not want autism in her life anymore and she got rid of it through the killing of her daughter.

Selfishness aside, there are other ways to dispose of a troublesome child, autistic or otherwise, that do not involve murder. Is troublesome a disturbing word? Sure it is...but it's the truth.

I appreciate that parenting a child with a disability - any disability - can be a trying experience. I've been on both sides of the fence: the disabled person and the caregiver.

For almost 7 years, I worked with people of all ages and levels of ability/disability when I worked as a home care and child care provider. I know that disabilities are a trying experience for all.

I am autistic myself and know that it was no picnic for my parents or me while was growing up.However, when a parent or caregiver starts thinking infanticide, it's time to look at other options...like removing the child from the care of that person.

If this woman wanted a "life without autism", then perhaps she should have considered giving Katie up for adoption or arranging with family to have someone else willing to take over Katie's care.

Was this thought of? Was this considered?

Who's to say? Friends and relatives reported that she was always crying and such.

I remember a woman I lived with who wanted to kill her child. For months this went on until I finally got fed up and said "Why don't you just call social services and give the child up?"

I got lambasted hardcore for that (called a childhater) and I was left asking the question:"Would people rather kill their children then give them up and just admit that they cannot look after them?"

What makes this story even more interesting is that Karen McCarron is a doctor (a pathologist)...oh yes, a MD who's just had her license stripped indefinitely. http://www.inclusiondaily.com/archives/07/01/09/010907ilmccarron.htm

A doctor who likely swore the Hippocratic Oath on the day she was given that MD. A doctor who swore that most ancient sacred vow to "First, do no harm".

A doctor who killed her own disabled child and said she was doing it to "end their pain".

A doctor who has pleaded "Not Guilty" to two counts of first-degree murder, two counts of obstructing justice and one count of concealment of a homicidal death. "Not Guilty" to charges that could see her in jail for 100 years if she is convicted.

I would seriously like to know what her professional position on euthanasia is. Well, one could argue that, because she killed her daughter, she must be pro-euthanasia. That is not the case with many NT's, however. Perhaps she might be dead against (pardon the pun) euthanasia in the cases of ALS, painful diseases, terminal cancers, etc.

How can a crime like this be excused? Is it ok to kill autistic children because they're "hard nut[s] to crack"?

On the day after Katie McCarron died, May 14, 2006 (Mother's Day - how ironic is that?), a couple locked their 19 year old autistic son, Christopher DeGroot, in their apartment and set the place on fire. This did not kill him, however. He was airlifted to a hospital where he lingered for awhile in great pain due to the burns and then died 5 days later.

My in-laws lost their 16 year old son last year in a car accident. They are still devastated. Another mother I know lost her child to suicide many years ago and she will never truly heal from that wound.

The death of a child is devastating to say the least.

How could a parent kill a child of their own?

I will never know this, but it is an interesting question.

More articles as well as memorial pages for Katie can be found here: http://lizditz.typepad.com/i_speak_of_dreams/2006/05/why_the_autism_.html

Of course, I only heard about this today, so I've missed getting this on the Autism Hub.

Perhaps it is fate that I have found out about this and am bringing it up again? Perhaps there's a reason?

Regardless, no matter what day of the year, things like should not be forgotten, swept under the carpet or ignored.

The truth needs to be put out to the world. People need to know what the bad press autism gets does to people.

To all of the autistics and other people killed because of their difference: rest in peace.


PEKIN: Mother wants videotaped confession suppressed

By KAREN McDONALD of the Journal Star

PEKIN - The Morton mother accused of suffocating her 3-year-old autistic daughter had thoughts about killing the child before - she said she “wanted a life without autism,” according her videotaped hospital room confession.

“It seems that everything I tried to do didn’t help her. She was a tough nut to crack,” Karen McCarron said on the tape. “I didn’t know what to do . . . she was not learning at a rate I would expect . . .”

McCarron went on to tell Morton police Katherine “Katie” McCarron was “detached,” mentally disconnected and being vocal May 13, 2006, the day she allegedly killed her.

“It’s just really heartbreaking,” McCarron confessed of Katie’s disconnect.

“Autism left me hollow,” a soft-spoken McCarron said during the May 15 interview from her hospital room at OSF Saint Francis Medical Center in Peoria. She was being treated for an attempted overdose of extra-strength Tylenol and had a small scratch on her wrist from a kitchen knife.

The tape was played in Tazewell County Circuit Court Tuesday during a hearing to suppress evidence in the year-old case.

Karen McCarron is charged with two counts of first-degree murder, two counts of obstructing justice and one count of concealment of a homicidal death.

Karen McDonald can be reached at 346-5300 or kmcdonald@pjstar.com.

For more on this story, read Wednesday’s Journal Star.

Cure - Desireable or detestable?

Every day, I see numerous blogs, newsgroup posts, newspaper articles and BS therapies all focused on the subject of autism, the dirty "A" word that generates a lot of talk, money and controversy wherever it is uttered.

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."

A Cup of Comfort for Parents - Book Recommendations

One day, while I was at the bookstore and fuming over yet another pity-party article about how devastating autism is to parents, I picked up a book called "A Cup of Comfort for Parents of Children with Autism: Stories of Hope and Everyday Success", Edited by Colleen Sell, with forwards by Doug and Laurie Flutie. (Interestingly, another football player with an autistic child, who has taken more positive strides)

I flipped through it excpecting to be bombarded with stories of how defective, tragic and devastating these parents feel their children are, since this is how parents are normally portrayed in the media.

How pleasantly surprised I was when I saw that this was not the case at all!

I will tell you a bit about what I saw: One mother talked in a manner very similar to many parents when it came to her son's diagnosis. One thing she did say right of the bat was something to the tune of "I did not cry. As my son's new advocate, crying was not an option."

Later on in her article, she mentioned talking to some people who say something to the effect of someone else they know whose child has 'something wrong with them'.

It is there she asked herself "Have I been projecting that there is something wrong with my son?" At one point she even resolved to "stop trying to fix" her son. Amazingly, things got easier for her and her son after that!

Another mother told a touching story about how she used to sing her son to sleep as a baby. (She had sung professionally at one time) When he became a toddler, he'd cry and cry when she sang. As he grew older, the result was the same - he'd cry his eyes out.

Was it sensory problems? Did music bother him?

As the boy hit the pre-teen years, he loved his music and loved it *loud*! So, what was the problem with her singing....was she that bad??

She finally sat him down and asked him to take all the time he needed to tell her why he cried when she sang. After a few minutes he said "Because it is too beautiful, Mom."

I just about cried when I read that one because I will also cry when I hear a beautiful singing voice! Back in 1994, I saw Loreena McKennitt perform live and I bawled my eyes out because her voice is so beautiful.

A hilarious story is told by a mother about an Aspie and his love for the forbidden words - you know 'em...the F word and such - and how he could find a lot of words to rhyme with them! The story was about his particular interest in learning the meaning of the word "whore". There's an adventure for a parent to embark upon!

Flipping more through the pages, I read the story of a mother whose son was obsessed with snakes. She learned that if she wanted to communicate with him, she had to do it on the "snake level", meaning it had to have something to do with snakes. I was moved by the end of the article where she tucked her son into be one night and he said "Mommy, I love you more than snakes".

A father spun a tale of his adult, rap music loving son and some friends who decided to take a field trip to Hooters. He told about how well behaved they were with the waitresses and how the waitresses were charmed by these young adults on the Spectrum.

Reading the book, I was just ecstatic! (I almost flapped my hands with glee before stopping myself because I was in a public place)

None of the parents in the book hid the basic facts and challenges of raising their autistic children. No details were spared that would hide the fact that life can be difficult. Cleaning up "messes", talking about snakes, dealing with kids in the playground and school officials...it was all there.

What I liked was that all of these parents found success in adopting a positive attitude and learning to accept and work with their children on their own level. They found ways to connect with their children and found that their bonds became stronger when they stopped trying to "fix" their kids and learned to accept them and work with them on their own level.

Sure, there were problems, sure it was no picnic, but these parents realized that by looking at their child as a problem, they were only making it worse. By seeing their child as a human being, these parents were learning to communicate, interact and have a good time with their children. They were learning how to help their child develop a sense of worth, self-esteem, which will later translate into personal success and more independence for those children.

OK, perhaps not complete independence, but is personal happiness is still an option, right?

Also, there is a lot of hope for parents in there as well as a chance for us to see where parents are coming from.

I recommend this book as a fun, enlightening, comforting and amazing read!

Is autism *really* as bad as a car accident or the death of a parent???

According to Calgary Stampeders football player, Jay McNeil, it is.

In this article: http://www.wrn.com/gestalt/go.cfm?objectid=92471727-A4F8-BC29-E4C49C87DD252981 written by Eric Francis, Jay McNeil "faces a brave new front".

My husband showed me this article and I think my normally low blood pressure rose to amazing new heights!

A few quotes from the article (This article will be posted in full at the end of this post since the Calgary Sun has this habit of removing articles after a short time and the link will not work):

The tears in Jay McNeil's eyes suggest the news hit every bit as hard as losing his father at age 11.

Even harder than the 18-wheeler that careened into him at age 25 and should have taken his life.

"My son..." started McNeil, pausing to deliver words no parent wants to utter, "has autism."

Good Gods...one would think the boy had been diagnosed with cancer or something!

Now, a parent might say that if their child was incredibly low functioning, this would definitely not be a good thing.

The truth is, from Jay's own quotes, he is not low functioning:

"We knew he liked letters and numbers but we just thought he was a smart kid," said McNeil, who wasn't told of the diagnosis until last fall.

"He's high functioning so we're pretty fortunate that way.

"There are lots of e-mails going around about autism and one from a mother who said she'd give anything to hear her son say 'I love you.' Cuyler will. As far as intelligence, he's as smart a kid as you'll find at that age."

Obviously, this boy can talk, count and do a lot of things most other kids his age can do.

So...my question is "What's the problem?"

The "problem", in my opinion, is not that Cuyler is autistic; it is the stigma that is now surrounding him.

Because of this newspaper article alone, which is meant to be inspiring, Cuyler McNeil is forever going to be associated with being something worse than Jay losing his father at the age of 11 and even worse than Jay being involved in car accidents that almost took his life.

He will read this article one day and he'll make the connection: who he is is worse than death or a car accident.

Sure, Jay says that Cuyler inspires him to be a better person, which is great, but there will always be that comparison to his own father's death and an accident that almost took his life. Two things that most certainly are traumatic and devastating.

How is that going to help raise a child's self esteem? How is that inspiring? The only thing it inspired in me was anger.

When I was looking for this article on Google, I dredged up a few other articles that also play the "Autism is devastating" card.

Some of the headlines:

"Autism is a Heartbreak to Parents" By Fraces Kraft

The link to that article did not take me to the article, but onto Autism Society Canada's website where I read even more headlines! (see link below)

http://www.autismsocietycanada.ca/general_info/archived_news/index_e.html

"Autism cash not enough: critics", By KATE DUBINSKI

"Critics say Ont. doesn't spend enough on autism." CTV News/ Canadian Press

"Coming to grips with autism." by John Ivison, National Post

"Autism needs funding, not platitudes." By Jim Young, The Chronicle Herald

This one scared me: "Canada: Court Of Appeal Overturns Superior Court Ruling On The Charter Rights Of Autistic Children." Article by Robert Weir. The article goes on to say Wynberg et al. v. Ontario and Deskin et al. v. Ontario (hereinafter "Wynberg Deskin"). Briefly, Justice Kiteley had ruled that the Ontario government’s decision to deny funding of IBI/ABA therapy to children over five years of age was a violation of their right to equal treatment at law under section 15 of the Canadian Charter of Rights and Freedoms (the "Charter").

Apparently, denying ABA/IBI is a violation of an autistic child's charter rights. Apparently, the government isn't spending enough money on forcing children to go through ineffective "therapy" for 40 hours a week!

Looking at how ABA/IBI is normally done, I would argue that this treatment is an even bigger violation of a child's charter rights to appropriate treatment. Meaning, the problems causing the behaviour are not being treated and a toddler is being forced into 40 hours a week (an average adult work week) of behavioural modification that will force him or her to pretend to be normal and not even address or acknowledge the real reason those behaviours are there.

That, in my opinion, is an even bigger violation of an autistic child's rights.

What's worse is the constant demonizing and bad press.

I was at a bookstore the other day while fuming over that article and I picked up a book called "A Cup of Comfort for Parents of Children with Autism: Stories of Hope and Everyday Success", Edited by Colleen Sell, with forwards by Doug Flutie and Laurie Flutie (another star football player with an autistic child).

I flipped through it excpecting to be bombarded with stories of how defective, tragic and devastating these parents feel their children are. How pleasantly surprised I was when I saw that this was not the case at all!

One mother talked in a manner very similar to Jay McNeil when it came to her son's diagnosis. One thing she did say right of the bat was something to the tune of "I did not cry. As my son's new advocate, crying was not an option." Later on in her article, she mentioned talking to some people who say somethign to effect of someone else they know whose child has 'something wrong with them'. It is there she asked herself "Have I been projecting that there is something wrong with my son?" At one point she even resolved to "stop trying to fix" her son.

I was ecstatic!

Flipping more through the pages, I read the story of a mother whose son was obsessed with snakes. She learned that if she wanted to communicate with him, she had to do it on the "snake level", meaning it had to have something to do with snakes. I was moved by the end of the article where she tucks him into bed and he says "Mommy, I love you more than snakes". Awww!

None of the parents in the book hid the basic facts and challenges of raising their childs. No details were spared that would hide the fact that life is difficult. Cleaning up feces, talking about snakes, dealing with kids in the playground and school officials...it was all there. What was not there was the negative attitude.

I liked that all of these parents found success in adopting a positive attitude and learning to accept and work with their children on their own level.

Sure, there were problems, sure it was no picnic, but these parents realized that by looking at their child as a problem, they were making life worse. I've been around parents of NT kids to know that parenting a NT kid is not always a picnic either.

I look at some of my relatives and friends who have NT kids and I look at some of the things they deal with:

1. Their kids bringing home all of their friends unannounced - and some of those friends are "bad eggs"
2. Their kids sneaking out in the middle of the night to go and get high, laid or drunk with their buddies
3. Their kids being brought home in the middle of the night by the cops when they get caught shoplifting or getting laid, high or drunk with their buddies
4. Their kids demanding the latest and greatest fashions, shoes and toys so they can fit in with the crowd
5. The constant anguish of dealing with kids who are not academincally inclined and more interested in hanging out with their friends
6. Their daughter with "easy virtues" coming home pregnant at a very young age (or for boys: getting some girl pregnant at a very young age!)
7. Their kids giving in easily to peer pressure
8. Their kids constantly defying their authority

Now...this is not to say that parents of NT's have it worse. This is not even to say this is what parents of NT's always have to deal with. Parents of autistic kids have their own set of worries as well. All parents of any child do!

What I am trying to get at is that having any type of child presents its pros and cons. Every single child on this planet comes with his or her own set of challenges.

Such is the joy of raising and teaching small human beings with their own minds, abilities and challenges.

By seeing their child as a human being, the parents in the book were learning to communicate, interact and have a good time with their children. They were learning how to help their child develop a sense of worth, self-esteem, which will later translate into personal success and more independence for those children.

As I've said enough times before: communication and interaction with people is a two way street.

Everyone has their limits, talents, challenges and exeperiences to deal with in life.

Each of us (I am referring to all human beings) are who we are because of a number of factors:

• Experience - How one experiences the world from birth will colour the way that person behaves for the rest of his or her life. Autistic children experience the world in a completely different way than most people because of a differently wired nervous system. Certain sensory filters may not be in place, or may be too effective to the point of not being able to sense at all. No two autistics will experience the world the same way, which makes it even harder for someone to pinpoint what the person experiences...just like everyone else.
• Past Interactions - We all know that past encounters will shape the way we view certain things. Almost everyone has had some sort of traumatic encounter that makes them "once bitten, twice shy" or leery about encountering similar situations again! How many people have said they don't like bees because they got stung as a child? How many people fear heights or something because of something that happened in their childhood? Autistic children have encounters that traumatise them too. Some have constant encounters with their sensory system that are bothersome, but they cannot articulate it because they have always felt that way and know no different way of being.
• Messages Received from Authority Figures - Human beings are interesting in that they instinctively shape themselves based on the feedback received by those they perceive to be in positions of authority. How many people have said that all they wanted was their father to say he was proud of them? I've heard this from NT's and autistics alike for years. The same goes for teachers, parents, religious officials, etc.
• The Environment - Location, location, location! Whether we are raised in a war zone, trailer park, townhouse, apartment building, house or mansion makes all the difference in how we see our world and develop within it. There are also climate factors: tropical, arctic, wet, dry, etc. all have their effects
• Friends - "You can pick your friends, you can pick your nose, but you can't wipe your friends on the back of the couch." (A quote from my friend, Fil) The people we associate with make a difference as well...even for autistic kids. When I was in that residential facility (institution), my mother said that I started picking up the bad habits of the other autistic kids. "When in Rome", right? This is why I often caution parents when thinking of sending their kids to a "special school". When I went to Alternative High School, I found myself in the company of a lot of interesting people, many of whom are my friends today. Their encouragement, ideas and lessons helped make me become the adult I am. What of not-so-good friends? The druggies, drunkards and bad-asses? They shape one's life too...
• Family - "Blood is thicker than water...and tastes better with crackers" ( A badge I bought years ago) Family is not something you choose and not something you can get rid of either. One can disown a family, but as long as the DNA is in their bodies, that person will always be of that family! How a family behaves toward a child makes all the difference, since it is a home and family that the chils will likely be exposed to most. How parents and siblings treat a child are especially important.

The parents in the book are taking the right steps in that they are seeing their children as human beings and they know the impact they are having on their children's lives.

I've often said that parents and caregivers have an incredible amount of power over their children's destiny. What they say, do and provide for that child will shape that chil'd life, how he thinks of himself, how he reacts and how he will be in the future.

What are you providing for your child?

What are you saying to your child; out loud and through your actions and attitude?

What are you doing to your child?

Becoming a parent is almost too easy: A few minutes of fun, 9 months of carrying baby around inside the womb, varying hours of labour and that's it. (well, biologically it is) Any fertile couple can produce a child.

Being a parent is much harder. There is the reponsibility that comes with bringing an individual human being into this world. The actions, thoughts, words and attitudes of parents will shape their child's destiny. That's a big responsibility and one each parent needs to consider and honour.

What destiny, then, is Cuyler facing, with a father cries to mention his son's autism; who compares him being autistic to losing his own father at a young age and nearly being killed in a motor vehicle accident?

What does this boy have to look forward to when his own parents see him as a travesty? What will his self-image be like? What is his future going to be like?

I hope, for Cuyler's sake, that Jim McNeil eventually dries up his tears, accepts his son for who he is and helps his son strive to be the best he can be with all the encouragement, love and guidance he will need in life!

It's not as bad as a car accident, cancer or losing a parent. I know...I am autistic.


Stamp faces brave new front
Autistic son inspires McNeil to be great dad
By ERIC FRANCIS -- Sun Media
(Published on Wednesday May 16, 2007)

Stampeders o-lineman Jay McNeil and his wife, Tara, pose with their son Cuyler yesterday at their home. McNeil, who is set to receive the President's Ring from the Stamps organization tomorrow, publicly stated that Cuyler was diagnosed with autism. (Sun Media/Darren Makowichuk)

The tears in Jay McNeil's eyes suggest the news hit every bit as hard as losing his father at age 11.

Even harder than the 18-wheeler that careened into him at age 25 and should have taken his life.

"My son..." started McNeil, pausing to deliver words no parent wants to utter, "has autism."

On the eve of accepting his second-straight President's Ring as the Calgary Stampeders' most inspirational player on and off the field, McNeil chose to pay tribute to his greatest inspiration by going public for the first time with the battle being waged by his four-year-old boy, Cuyler.

"When you get the news that your kid is autistic, it's devastating," said McNeil yesterday, wiping tears from his cheeks.

"But I wouldn't change it for the world. Every day we thank God for bringing him into our lives. He's the best kid you could ever ask for. He's got the best attitude and is the gentlest kid. He doesn't ever want to hurt anybody. He just wants to have fun."

It was more than a year ago McNeil and wife Tara noticed Cuyler's affinity for counting, which led doctors to send him to a developmental pediatrician.

"We knew he liked letters and numbers but we just thought he was a smart kid," said McNeil, who wasn't told of the diagnosis until last fall.

"When they sat us down to tell us it was hard -- I teared up. But when I was driving home I called my mom to tell her and I finally broke down. Thing is, I wouldn't want him any other way. We loved him and thought he was an awesome kid beforehand and it doesn't change who he is."
Autism is a developmental disability stemming from a disorder in the central nervous system. It can affect children by delaying social interaction, language or play.

"Most people wouldn't know -- we kind of haven't really said a whole lot," said McNeil, 36, who has registered Cuyler in a regular school for next year.

"It can range from mental retardation to kids that don't talk and may never talk.
"He's high functioning so we're pretty fortunate that way.

"There are lots of e-mails going around about autism and one from a mother who said she'd give anything to hear her son say 'I love you.' Cuyler will. As far as intelligence, he's as smart a kid as you'll find at that age."

Thankful he lives in Alberta, which has the highest autism funding in Canada, the London, Ont., native says 30 hours of one-on-one work with two aids every week has helped Cuyler make huge developmental leaps since September.

A longtime spokesman for CUPS who has made regular appearances at charity functions throughout his 13-year career, McNeil says he and Tara want to get involved with Autism fundraising.

Fortunate enough to have won two Grey Cups while playing in front of a handful of the game's top quarterbacks the last 13 years, the 300-lb. Stampeders offensive-lineman also feels blessed to have escaped death after experiencing two high-impact car accidents within an hour.
"My Jeep hit black ice and rolled end over end twice and then on its side," said McNeil of the 1996 accident on a North Dakota highway.

"The cops came and we were waiting for a tow truck and an 18-wheeler slid on the same ice and crushed all three cars we were in.

"I was sure the cop next to me was dead -- he was slumped over the wheel and unconscious and I didn't have a scratch on me. I was definitely lucky to be alive."
Despite his son's battles, not a day goes by the five-time all-star doesn't realize how charmed his life has been.

McNeil is revered by teammates and a fan favourite on a model franchise that will honour him at noon tomorrow with a soldout luncheon at the Convention Centre sure to get emotional when talk turns to his family.

"Whenever things get tough I think about Cuyler," said McNeil, only the third Stamp to win consecutive President's Rings as voted by teammates (the others being Alondra Johnson and Danny Barrett).

"He's easily the most inspirational thing in my life. Everything Tara and I do we think of him first. We just want to give him every chance to succeed."

Just like his big daddy.

Is All the Media Hype a *good* Thing?

On April 29, 2007, an article called "Hollywood Finds its Disorder Du Jour" was published in the New York Times. http://www.nytimes.com/2007/04/29/movies/29jame.html?ex=1178856000&en=3d30b42a68e0e09e&ei=5070

The article illustrates that autism is getting a lot of press on things like Oprah, Larry King, The View, etc. It is also a popular subject in moves, such as Snow Cake.

This article was posted on a miling list that I'm on and the reactions have been mixed: Some parents think this is a fabulous thing and gives so much hope for their kids. Many of us on the spectrum, myself included are really looking forward to the time when autism's 15 minutes of fame are up.

I find all this sensantionalistic attention to autism to be somewhat irritating and I was questioned by a well-meaning soul. His or her argument was that many of us have complained that our parents did not understand us and it made our lives more difficult. By having the media involved, more understanding is brought to the masses, parents are seeing things differently, will get their children the help they need, which will then result in a "happier healthier" child.

Fair logic, of course. I always like to be challenged to see things in a different light, but I do have my reservations about the method, even if I do agree with the motive that more knowledge needs to be put out to the world.

My reponse is:

Interesting logic and I can see the point.

However, Hollywood doesn't exactly do the best job of portraying autism, nor does it even come close to showing what it may actually be like for us. It certainly does not portray us in a flattering light.

Rain Man came out in the theatres when I was about 13. That was the time I was told I was autistic.

I'm almost 32 now and have had to live with the stigma of Rain Man in my career and other areas of my life.

Do you know how many times I've been told "You can't possibly be autistic...you're not like Rain Man!"? How many times I've been asked "So, if you're autistic, you can count cards like Rain Man too, right?" And on and on and on.

My parents were even approached by a TV station in the late 70's to make a movie about how I was treated and they outright refused. The reasoning was that I was the first child at a new society for autism treatment in my home town who was treated for Autism under the age of 6 and did very well by it. They almost wouldn't take me in because they would not treat kids under 6, but my parents managed to convince them to try. I was the youngest there.

Now, early intervention is the way to go. The younger the better, right?

My parents did not want my life to be overshadowed with the A word because they knew I'd somehow do all right. They didn't want their lives overshadowed even more. My mother said that I could grow up and change my name, and no one would know who I was. I would look different as an adult than I would have as the little child on TV. They would always be remembered as those people with the autistic kid who was in that movie. Sure, they may have made a ton of money with it, but my parents did not want our family's reputation sullied. I am grateful for that, seeing the implications first hand.

Had the movie been made, I think my life would be worse. Even if I didn't tell prospective employers, they'd know my name and associate it with autism and perhaps not give me a job. My father freaked when I was on the front page of the news back in 2003.

I ended up changing my first and last name last year because I found it increasingly difficult to get a job after that newspaper article came out, even though it was very positive and focused on the good things I am doing with my life. Prospective employers likely remembered the name, how it was associated with autism and decided not to even call me for an interview...even though I was qualified.

Prior to the article's publication, I had no problem getting jobs.

Happier, healthier children because of the publicity? It certainly has not made me happier, nor healthier. I've had to change my name (which is OK, because I hated my old name anyway) .

I've beaten this one a few times on this blog, but the PR we seem to get is associated with the words "Travesty", "Epidemic", "Burden", "Fate worse than death or cancer", etc. I doubt it's really going to give much benefit to the children growing up who are going to be living with the negative spin these societies, movies and such put on autism.

That being said, I do agree that the general public, parents and professionals really do need to be educated about what autism is exactly. Before they can be educated, however, I think that needs to be determined for fact (not the speculations currently flying about) and how it affects us as autistic people and not just those around us. The whole picture needs to be looked at and people need to understand.

Currently, autism education seems to be limited to the sensationalistic hype of the popular media and the "doom and gloom" approach of the autism societies and therapists.

I don't think they're getting the right message at all, which, in my opinion, is really doing no good for anyone involved.

Then the question must be asked: "If the current messages being put out are not beneficial, how can it be done?"

There are attempts by many to put the word out to the world.

Most notable is "Getting the Truth Out" (http://www.gettingthetruthout.org), created by a collective of autistic adults, which is a direct rebuttal to a website called "Getting the Word Out"(http://www.gettingthewordout.org/), which was created by the Autism Society of America.

Getting the Word Out has changed their website since Getting the Truth Out was published, so you will likely be wondering how is one a direct rebuttal of another? They don't even look the same!

Now, Getting the Word Out has this very depressed and despondent little boy as their poster child and the same black background and scribbly print as most anti-drug or gang sites have.

Their initial paragraph: "Living with autism can be a very cold and lonely life for a child. Not to mention, very challenging for the whole family. One day, that child living with autism, will grow up to be an adult living with autism."

That's kind of like saying "That cute little baby rat is going to grow up to be an adult rat who carries pestilence and death to all it encounters." That may not be what they're saying exactly, but they might as well be, in my opinion.

They then go on:

"Only by getting the word out about the harsh realities of autism can we even begin to help put all the pieces of this puzzle back together.

Why are we doing all of this? Why not just turn the other cheek like so many before?

The sooner autism is diagnosed, the sooner treatment can begin, and the sooner families living with autism can reduce some of the challenges associated with this disability."

I'm not seeing much of an improvement in their message. Are you? (Maybe I'm missing something)

[impending sarcasm alert! Please do not read if you are emotionally sensitive to a little bit of sarcasm. There is another red notice at the end, so you can scroll directly down to it.]

:o( <----- My despondent little sad face guy can be the poster child of my "Let's Stop the Bad PR" campaign. "Living with the stigma that doom and gloom societies who claim to advocate for autism perpetuate can be a very cold and lonely life for an autistic child. Not to mention, very challenging for the whole world. One day, that child living with negative stigma, will grow up to be an adult living with negative stigma."

I could then go on to say:

"Only by getting the word out about the harsh realities of autism-related stigma can we even begin to help [I'm completely omitting that whole irrittating puzzle reference] create a world that is not only understanding towards autistic individuals, but accepting as well.

Why are we doing all of this?

The sooner the negative stigma is stopped, the sooner understanding and acceptance can grow, and the sooner autistic individuals and their loved ones can avoid some of the challenges associated with this tye of negative publicity and perhaps lead happier lives."

[The Sarcasm Alert has passed and readers can now continue to enjoy the rest of this blog]

There are hundreds of web sites, blogs, books and such out there that it must be very overwhelming even for NT's to look at!

I have categorized them in a way that has made them easier for me to sort through them:

Websites

• Autistic Self Advocacy/Information Sites (Individuals and organizations) - Websites created by autistics or groups of autistics that are designed to convey a message about what it is like to be autistic and what their wishes are with regards to how autistics are treated in society. Some include statistics and real-life stories from the autistic standpoint.

One thing to note about sites created by autistic individuals and groups is that their style of presentation and writing may be a little blunt for the more sensitive viewers out there. Some content may seem disturbing to some, some may just come across as just plain rude and insensitive!

When reading these sites, I recommend putting any emotional responses on the back burner and just reading the words. Detach yourself. Most autistics are quite brutally honest, but you can rest assured knowing that you are getting the truth, if not a warm fuzzy feeling.

• Parent-created Advocacy/Information Sites - Websites created by parents and/or families of autistic children and designed to provide insight and information from the perspective of families. Some include personal stories, tips for other parents, links, testimonials (I almost said "Testi-MOM-ials", which is a cute word!), etc.

The thing to remember with any personal web-site: you will see a variety of viewpoints and attitudes, from the downright positive to the essential pity party. Surf at your discretion!

• Societies - Societies are formed in order to achieve a certain goal or bring like minded people together for a cause. Their motivations are noble: They want to help people with something. Autism societies have the same goals, and like other societies, need money to achieve the goals...lots of money. Advertising specialists know why people fork out money for something: they either want a product or service very badly, or they have been peitioned at the weakest point of their social defence: their emotions; particularly negative ones. In other words, if Joe Public does not desperately need or want the services/products provided by the society, the society then needs to appeal to his base emotions (the "heart strings" approach). Therefore, autism societies do need to resort to scare tactics, heart wrenching language and emotional stimulating stories and pictures to make their money. Not the best PR for those of us they are claiming to serve, but excellent revenue generators for them.
• Products and Services - This is truly an entertaining and educational area if you have the time to seek these types of web sites out. Nobody really wants to say it, so I will: There is a lot of money to made on autism! Ask any parwent who has ever shelled out $40,000.00 a year for ABA therapy and who knows what else. Entrepreneurs: are you looking for a surefire way to make money? Market your product or service as being for autism. It doesn't matter what it is: horse manure mud-packs, electoshock treatment, chelation therapy, coloured sunglasses, games, videos, books, clothing, shoes, foods, etc. - Autism has become a very lucrative industry! Some products and services will be immensely useful, while others reek of snake oil. Excercise caution and ask around before committing to any theories, products or services.
• Theories and Scientific Study - While theories and scientific studies of all sorts may appear on any one of the types of sites listed above, they can also take up webspace of their very own. These are as entertaining as the Products and Services out there. Like the Products and Services, some theories are very feasible and workable, others are just plain left field!
• News -

Blogs, books, pamphlets and such fall under similar categories as the websites. My simple advise to anyone reading, surfing, learning or buying is Caveat Emptor - Let the buyer beware.

Another thing to remember is that any literature is best approached with an open mind. You may not agree with someone's work, but you'll know what is out there. Knowledge is power, folks.

A more positive attempt to get the word out has been made by a filmmaker by the name of Trisha Regan. Trisha is the mother of an autistic child who is probably as sick and tired of the negative PR as well, so she decided to do somerthing about it in the best way she could: she made a movie.

In her own words regarding her reasoning: “I thought if you make a movie about autism, I'm not going to want to see it,” “I'm not going to want to sit there for an hour and a half and kind of be beaten up. I said we need to find a structure where Autism is the obstacle and the subject are the people.”

(See this site for the whole article http://www.ny1.com/ny1/content/index.jsp?stid=19&aid=69425)

The movie is called "Autism: The Musical" and it is the story of 6 autistic children and their families who get involved in a project called "The Miracle Project", which is to have these kids perform in a musical. The film illustrates everything that goes into this "project" and what is happening with everyone involved, from families to communities.

Reviewer Ronnie Scheid of Variety.com wrote that "With nary a throbbing violin (though one boy plays the cello), pic manifests each child's value, minimizing neither their undoubted potential nor their very real problems." (See the full review of Autism: The Musical here http://www.variety.com/review/VE1117933474.html?categoryid=31&cs=1)

I have not seen this movie, so I am not qualified to give my opinion of it either way. (I had originally thought this was an actual musical about autism and got a good laugh until I found out it was a movie about autistic children creating and performing in a musical)

I know that Autism Speaks (an organization that many autistic adults, myself included, emphatically say "Does not speak for *me*!") supports the making of this movie. At least their website looks more positive than "Getting the Word Out".

Looking at the quote above, I would like to see more of the "manifesting each [person's] value, minimizing neither their undoubted potential nor their very real problems."

Thank you, Ronnie Scheib, for articulating in your review that which I would certainly like to see more of when it comes to publicity and autism!

If autism's 15 minutes of fame is not soon to expire, then can we at least get some *decent* press?

Is that possible?

Just a silly one about theory of mind

I find that it comes as a shock to most NT's that many autistics have this kind of underlying hostility towards them and they cannot figure out why. It's kind of funny when you think about it.

You see, so many NT's and professionals think autistics have a problem with theory of mind: recognizing that other people have feelings, etc. I'm not saying that all autistics do have a grasp on this, since many have problems with this.

I have to constantly remind myself that "other people have feelings too" and "How would I like it if someone did that to me?". Yep...this is something I have to consciously do.

When I was a kid, I used to look at other people like moving, talking things. I saw nothing in their eyes,...they looked dead to me...but still walking and talking. (Hard to explain) All I could feel were emotions coming from them (usually hatred).

When I finally taught myself to look at someone's eyes and body language (that took a very long time), I began to see so much more. People are not dead automatons. Their eyes and facial expressions tell so much and they correlated with the emotions I was feeling.

You know, I think learning to read books was easier for me... I learned to read at 3...it's taken me over 25 years to learn about emotions and body language as they emanate from NT's.

Even harder still is talking to other autistics! I keep having to revert back to my natural way of speaking, otherwise they get offended or confused because I'm talking like a NT.

*sigh* I just can't win.

Well, I find the same goes for most NT's. They don't seem to think that autistics have feelings, dreams and intelligence as well. Often, we are seen as walking automatons who are normal people that are seemingly "dead" or "trapped" and need to be brought out.

Autistics may not be recognizing all of the feelings and signals NT's are emitting, but I find NT's just as incapable of doing the same for autistics. I cannot begin to count how many times someone has misinterpreted my signals, feelings and such!

When I talk to some people, I keep thinking "We're both speaking English here...what is it you're not getting? What am I not saying right?"

A mother said on a mailing list: "Finally, I stopped being hung up on the label and started getting to know my {child] who who [my child] is."

That is something so many people forget. Each autistic is different, each has different needs and different issues and different ways to deal with said issues.

They're so busy feeling sorry for themselves as parents of autistic children, that they tend to forget that it can suck just as much, if not more, to *be* the autistic child to whom no one gives any credence!

It was not fun for me to be a child any more than it was for my parents to raise me. I feel bad for them, but they chose to have me.

I didn't ask to be born the way I was.

I could see it now (warning" Sarcasm alert):

"Yes, I would like to be born with a developmental disability that will make my life and the lives of those around me a big pain in the butt. I want to have all sorts of problems with my body and nervous system and I'd like for people to constantly misunderstand me, write me off and think I'm something that I'm not. I'd like to have problems learning certain things and I want to always be on edge.

"I'd like to feel sick all the time and not be able to express what I'm feeling so I'll never get treated properly and people can think I'm just a hypochondriac.

"I'd like to have less of a chance of succeeding in life than the next guy...oh yes, can you make me female as well just so I can *really* experience that whole Glass Ceiling effect from both the autistic and female perspective? That would just be awesome!

"I want to really have poor chances of getting anywhere in life cuz I'm just a sado-masochist at heart!

I also want every one else around me to feel like crap too cuz I'm also an insensitive clod...what? Insensitivity comes as part of the Autism Deluxe Package Deal?? Whoo hoo! Score!

"Where do I sign up?"

Ok...sarcasm has passed. Sorry 'bout that...just a little burst of anger and frustration.

They could have gotten rid of me, put me up for adoption, etc. But they didn't. They chose to keep and raise me. They accepted their responsibility as parents and I am very grateful for that.

I am also even more grateful for the fact that I got far enough ahead in life that I can now look after them as they age.

Kids, even autistic ones, can usually perceive some sort of negativity towards them and it helps no one in the end. The kid grows up feeling inadequate, defective and unable to do anything, while the parents have to deal with supporting their children even more.

Yeah, I know..."try being the parent". (See, there goes the theory of mind prompting again...)

I'll never be a parent, but I've grown up with the stigma, negative press and all that which is out there about autism. I've spent my life proving that I am not the worst case scenario that seems to get shown in the brochures, websites, blogs, movies and TV.

Who's going to hire someone who has that "epidemic" that is just a "devastating" and "tragic" bloe to families?

Why not just stamp "sociopath" on my forehead?

I'd probably have more a running chance of getting a job with &that* label than I do being an honest, hardworking autistic person!

Look at most CEO's and such out there - most of them fit the psychological profile of a sociopath and they're at the top of the work food chain! (Sociopath does not always equal serial killer, by the way. Sociopaths just have no conscience and get what they want ruthlessly.)

I've spent my whole life fighting to be heard, to be accepted and to be allowed to make my own way in the world without people thinking I'm incapable of this or that. I know how hard it was to raise *myself*.

If I had an autistic child who had to go through what I have, I'd be going postal on someone's butt at least twice a day...which would be very bad. I wouldn't want my kid to live through what I have...and I've done really well! I'd hate to see any child go through what a lot of other autistic people have to go through. I was lucky!

Theory of mind works *both* ways, it seems. Just as communication does.