Autism Horror As Son Attacks Caregiver

It is fashionable these days to talk about autism disorders as though they are joyful, beautiful blessings bestowed upon our children. Some internet bloggers prattle about the joy of autism. They also try to suppress any negative description of autism whether it was the "Ransom Notes" campaign of NYU Child Study Center's Dr. Harold Koplewicz or the courageous parents who participated in the Autism Every Day video. These feel good censors paint an inaccurate picture of autism, one which ignores completely, and misleads the public about, some of the harsher realities of autism disorders. In the process they do a huge disfavor to some severely autistic people, their families and caregivers.

In Desperate plea for help Susan Sherring of the Ottawa Sun reports the horror that confronted Brenda Reisch when her 15 year old autistic son, weighing more than 200 pounds attacked his caregiver, breaking his nose, leaving blood splattered on the walls and bruises on the caregivers back. Residential services have not yet been made available because her son's case is not considered a "crisis" level situation. Yet her son has become more violent, uncontrollable and aggressive in recent months.

"I can't describe the horror of looking at what my child had done, the amount of blood, it was all over the walls, all over the carpet, from one end of the house to the other," she told the Sun.
...

" He could potentially hurt someone else. We need help," Brenda says.

...

" We need a life. He needs a life, too. He needs help. I know this might mean he can't live with us and that devastates me. I can't tell you how many times I've been in tears.

"I love my son. He's the most precious thing to me in the world. If this is what we have to do, it's going to tear me apart, but I know he could potentially kill someone and I can't put him in that situation."

I have provided legal services to families whose children with autism spectrum disorders hurt family members and parents. And I have met others in the course of my autism advocacy. This situation is not that unusual. The truth should be told not hidden behind feel good stories and wishful thinking. To do so is to do a disservice to all involved.

autism

Sundance Channel Features Autism Every Day on April 2, World Autism Awareness Day

PR Newswire announces that The Sundance Channel will be airing the Autism Every Day video on World Autism Day, April 2. The neurodiversity movement, always angry at those who disagree with its "autism is beautiful" philosophy, has an irrational hostility toward the Autism Every Day video and its creator Lauren Thierry. But many parents of autistic children, including me, appreciate the video's honest portrayal of the challenges presented by autism disorders and the impact on the lives of the children with the disorder and the parents who love them and care for them. Lauren Thierry, Autism Speaks, Robert Redford and the Sundance organization deserve applause for presenting the hard realities of autism to the world.

NEW YORK, Feb. 13 /PRNewswire/ -- Sundance Channel will present the U.S. television premiere of Lauren Thierry's documentary Autism Every Day on April 2, 2008, which has been designated World Autism Awareness Day by the United Nations. The film, which debuted at the 2007 Sundance Film Festival, documents a typical 24-hour day in the lives of eight families struggling to raise children with autism. Autism Every Day premieres on April 2nd at 8:00pm et/pt.

Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by extreme behavioral challenges. There is no cure for autism and the symptoms can range from quite mild to very severe. Autism rates are increasing throughout the world. In the United States, diagnoses have increased tenfold in the last decade, affecting 1 in 150 children according to the Centers for Disease Control. Autism's cause remains unknown, and there is currently no test to help prevent it. Addressing the disorder as a global health issue, the General Assembly of the United Nations has designated April 2nd as World Autism Awareness Day in perpetuity, starting in 2008. On April 2nd, U.N. member nations will seek to raise society's awareness of autism through education and celebration.

With Autism Every Day, director Lauren Thierry (who is herself the mother of a child with autism) illuminates the struggles parents of children with autism face every moment of the day. Thierry goes inside the homes of eight diverse families doing their best to cope with a perplexing disorder that completely dominates their lives. Autism Every Day shows how developmental skills that most parents take for granted -- a child's ability to brush his teeth or communicate a need -- can prove enormous hurdles for an autistic child. At the same, Thierry's film captures the unconditional, powerful love these parents feel for their children and their determination to provide them with the best care possible. Autism Every Day was produced by Autism Speaks, the nation's largest advocacy organization.

ABOUT AUTISM SPEAKS

Autism Speaks is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention and treatments for autism, and to advocating for the needs of individuals with autism and their families. It was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Vice Chairman, General Electric, and served as chief executive officer of NBC for more than twenty years. To learn more about Autism Speaks, please visit http://www.autismspeaks.org/.

ABOUT SUNDANCE CHANNEL

Under the creative direction of Robert Redford, Sundance Channel is the television destination for independent-minded viewers seeking something different. Bold, uncompromising and irreverent, Sundance Channel offers audiences a diverse and engaging selection of films, documentaries, and original programs, all unedited and commercial free. Launched in 1996, Sundance Channel is a venture of NBC Universal, Showtime Networks Inc. and Robert Redford. Sundance Channel operates independently of the non-profit Sundance Institute and the Sundance Film Festival, but shares the overall Sundance mission of encouraging artistic freedom of expression. Sundance Channel's website address is http://www.sundancechannel.com/.

Sundance Channel
Press Contacts: Sarah Eaton Sundance Channel sarah.eaton@sundancechannel.com 212-708-8043 Katie Lanegran Sundance Channel katie.lanegran@sundancechannel.com 212-708-8044

autism

Autism and Censorship

I do not subscribe to the vaccine/thimerosal causes autism theory. It is necessary to state that at the outset because of the often heated, sometimes irrational nature of internet discussions of autism issues.

There exists a group of people, often called "neurodiversity" comprised of some high functioning autistic persons, some parents and professionals who share their view, who tend to promote a view of autism as a non-medical disability, a socially created disability which, from their perspective is simply different wiring of the brain. In the neurodiversity belief system autism is just a different way of thinking which, by their self identification with historical geniuses, can even be seen as superior to neurotypical thought. Positive views of autism are promoted. Negative realities of autism are suppressed. And now, in the American Academy of Pediatrics, the neurodiversity movement has a powerful new ally as it seeks to censor a work of fiction - the Eli Stone television series episode which apparently suggests a link between vaccines and autism.

The neurodiversity group is so rigid in its perspective that its adherents react with intense hostility to any negative portrayal of autism disorders such as that shown in the Autism Every Day video or the Ransom Notes campaign. The AED video presented the realities of autism from the perspective of caring parents. The Ransom Notes campaign was an attempt to create public awareness of some of the harsher realities of disabilities includig autism. While they have not been able to silence Autism Speaks, or the parents who created the Autism Every Day video, it is not for want of trying. And the "autism is beautiful" movement was a prime player in the successful effort to censor the Ransom Notes campaign, a campaign which was designed to focus attention on the harsher realities of various disabilities including autism disorders. Even Ph.D's, academics, presumably committed to the free exchange of ideas, bragged on the internet that they were doing "happy dances" over their success in shutting down the Ransom Notes campaign.

The Eli Stone episode is, on the surface, objectionable to the neurodiversity autism censors because it portrays a link between vaccines and autism. The episode features a family attorney who wins a court decision in which he successfully argues that a mercury-containing flu vaccine caused autism in a child. This alleged causal link enjoys little support in the medical and scientific communities and the AAP is presumably acting with good intentions when it seeks to censor the episode in question. But the same can not be said of the neurodiversity censors.

To be sure their criticisms of the vaccine autism link are consistent with accepted medical and scientific opinion but they want the episode and such discussion censored for another reason. They are offended by a medical model of autism disability. To them autism is a disability only because society imposes conditions on autistic persons which make it a disability. Even discussion of potential environmental bases for autism, anything other than a purely genetic model, is met with intense hostility by neurodiversity bloggers.

I have never been a fan of David Kirby, or his promotion of the vaccine causes autism theories. But I would not want to silence his voice, his opinion on this or any other subject. And I believe he has a point when he expresses alarm about the attempt to censor a television series episode in Scarier Than Fiction: Pediatricians Try To Censor ABC.

Autism Disorder is a medical disorder. Censorship is a severe social disorder which poses a threat to the health of a democratic society.

autism

Autism Speaks Tackles Autism Crisis in South Florida Mar 24 - 28

Donald Trump, Bob Wright, Suzanne Wright, Melania Trump
Photo: TOWN-CRIER Online

Autism Speaks is continuing to show outstanding leadership in tackling the Autism Crisis in the US and around the world. Co-founders Bob and Suzanne Wright have joined with Donald and Melania Trump, local parents and autism advocates in organizing a South Florida autism awareness and fundraising initiative to take place during the last week in March. Autism Speaks Week, March 24-30, will include a number of activities including a Television News Series on the autism crisis of escalating rates of autism diagnoses, March 24 to 28 on NBC stations in the area, an on-line auction, ING Direct Ride Now South Florida motorcycle ride, Saturday, March 29, a telethon and broadcast of 'Autism Every Day', and a concert for Autism Speaks, headlined by Lionel Ritchie, Sunday March 20.

As stated by Bob and Suzanne Wright in TOWN-CRIER Online:

“Autism is a national health crisis that is affecting families in every corner of this country, from Florida to Alaska,” Bob Wright said. “Autism Speaks Week will shine a spotlight on the struggles of South Florida families and inform people about what they can do to improve the lives of individuals with autism in their community.” “Our hope is that this series of events will increase the level of understanding and acceptance,” Suzanne Wright added. “The money we raise will help Autism Speaks fund autism research and support community organizations here in South Florida and across the United States that provide critical services to children and adults with autism.”

The ability of Autism Speaks to generate public awareness of autism, raise funds for autism research is amazing. And now Autism Speaks is turning its considerable abilities to assisting local autism support organizations. Not content to engage in endless peurile debates over the appropriate metaphors to use in describing autism or whether to say "autistic person" or "person with autism" Autism Speaks is actually doing something constructive, in a big way, in addressing the Autism Crisis.

autism

Autism News of the Year - 2007

These are my personal choices for top autism news of the year - 2007


Autism Research (Tie)

Autism genome scan reported.
Unified Theory of Autism published.


Autism Health Care

American Academy of Pediatric autism reports published:
Identification and Evaluation of Children with Autism Spectrum Disorders
Management of Children With Autism Spectrum Disorders

Autism Awareness (3 Way Tie)

Autism Every Day Video screening at the Sundance Film Fesitval.
Faces of Autism series published in the Vancouver Sun.
World Autism Awareness Day, April 2, declared by United Nations.

autism

Autism Every Day At The Nantucket Film Festival

'Autism Every Day' was scheduled to play this past week at the Nantucket Film Festival. The film has been a key element in the efforts by Autism Speaks and Bob and Suzanne Wright to raise autism awareness, real autism awareness, around the globe. The film generated much hostility from those who wish to portray autism as simply a natural variation, a subgroup of people with different ways, perhaps even superior ways of thinking. For daring to portray the real challenges of their autistic children's neurological disorders the parents of Autism Every day were vilified by the Neurodiversity movement on the internet.

Autism Every Day, and the courageous parents who participated in the filming, helped shatter the propaganda of the 'Autism is Beautiful' movement, the nonsense perpetrated by the Neurodiversity ideologists, those who make a career of pretending to be the voices of autistic people and those who like to hold 'acceptance projects'. For the Neurodiversity movement 'Autism Every Day' could not stand without challenge. And so they lashed out at the loving parents who appeared in the video.

Autism Every Day presented autism as it really is - a neuro-biological developmental disorder characterized by impaired communication, deficits in social interaction, and in some cases dangerous behavior. As the father of a profoundly autistic boy; a father who loves his son dearly and takes joy in each moment with him, while dealing with the hard realities of his autism, I thank the Autism Every Day parents for their courage and candor.

I hope they and their children are doing well.

Autistic Boy One of 11 Molested, Raped In Ontario Group Home

From Barrie, Ontario, the Toronto Sun reports the conviction of Joseph Cross, 37, for molesting and raping 11 children in in group homes run by the Barrie and District Association for People with Special Needs. One of the victims was an autistic boy whose mother was heart broken when she had to leave the boy in a group home and who was crushed when she found out later that he was sexually molested at the home. Sentencing is scheduled for December 10.

This story and others should be a wake up call for the people in the Neurodiversity movement who argue on the internet, publish books and establish "acceptance projects" proclaiming that autism is not a disability, that we should find joy in autism. These people pontificate on such important issues as whether the puzzle piece image is offensive as a symbol for autism and whether it is more appropriate to refer to someone with an autism disorder as an autistic person or as a person with autism. Some Neurodiversity ideologues talk about the superiority of autistic intelligence and attack anyone who advocates a theory of autism, or autism cause or treatment inconsistent with their ideology. And almost all like to downplay some of the harsher realities of life confronting the many severely autistic persons who lack the ability to engage in internet debates. Truth talking parents like those in the Autism Every Day video are vilified by these ideologues.

But each day the news brings us back to reality - an autistic child is sexually molested in a group home in Barrie, Ontario, an autistic boy is killed by a motor vehicle after he snuck out of his home clad in pyjamas to run in traffic in New Zealand, a middle aged autistic woman with no communication ability is repeatedly assaulted by attendants in a Long Island residential care facility, an autistic boy is left locked on a hot school bus for hours in Kansas.

These are ugly realities but they are realities that parents and other caregivers of severely autistic children and adults can not, should not, must not ignore.

Autism Reality from Roanoke

All autistic persons are not savants. There is a wide range of severity of autism. There are some who are intellectually impaired and some who can not communicate. But if you went by some mainstream media sources like CNN, Newsweek and the UK Guardian, by Hollywood movies or by internet sites devoted to autistics who choose to become non-speaking autistic adults, after years spent as a speaking person with a different diagnosis, you would know little of the realities of life for severely autistic persons and their families.

The realities of life for severely autistic children and their families were well and accurately portrayed in the Autism Every Day video and in the excellent Faces of Autism series in the Vancouver Sun. And the attached link and excerpts from The biggest frustration is you don't know in The Roanoke Times, Roanoke.com, August 13, 2007, also provides a realistic portrayal of life for, and with, a more severely autistic child. It is the story of Nicholas Crouch-Hullender a non-verbal 8 year old autistic boy.


http://www.roanoke.com/news/nrv/wb/127717

A few months later, when Nicholas turned 2, he was officially diagnosed. Crouch-Hullender had an answer to her son's unusual behavior.

And that's when her questions really began. Would Nicholas ever talk? Could he ever live by himself? What teaching method or special diet would be best?

Years later, Crouch-Hullender is still wrestling with such questions about her son, who is now 8 and can say just two words, "hi" and "bye," though he can type his name and can use sign language to say "I love you" to his family.

...

Nicholas tends to pinch when he gets mad. A naturally fair-skinned redhead, Crouch-Hullender now frequents a tanning salon so that bruises from where her son has grabbed her won't show as much.

Nicholas is among the roughly 40 percent of children with autism who do not speak. Many children with autism are also mentally impaired, but to what degree can be tough to tell because of their severe communication barriers.

Crouch-Hullender said her son is "very intellectual" in some regards but still struggles with some tasks a kindergartner could do.

When Nicholas was 5, doctors told Crouch-Hullender her son could never get by on his own, but she holds out hope that he will inherit her house one day and be able to live at least somewhat independently.

Neurodiversity's Ten Autism Commandments

1. Thou shall not call autism disorder a disorder.
2. Thou shall not seek to treat or cure thy autistic child for if you do you shall forever be known in the records as a "curebie".
3. Thou shall not conduct research into environmental causes of autism.
4. Thou shall not conduct research into the genetic nature of autism.
5. Thou shall not abuse thy autistic child by exposure to Applied Behavior Analysis or any other such evidence based effective autism interventions with which Satan, or Lovaas, may tempt ye.
6. Thou shall speak no evil, make negative comments or say bad stuff of autism.
7. Thou shall have no researchers before Mottron and Gernsbacher unless they conduct experiments in such a way as to prove that autism intelligence is really superior intelligence.
8. Thou shall make no mention of autistic youths and adults living in institutional care.
9. Thou shall not lay down with evil or watch the "Autism Every Day" video.
10. Thou shall repent for all thy NT sins.

Autism Reality - Joy and Broken Windows

Parents seeking to better the lives of their autistic children must overcome many obstacles including prejudice and ignorance of those who blame them for their children's behaviour. Bettleheim's twisted theories no longer prevail, at least not openly. But as a lawyer I have advocated for families whose parenting skills in raising their autistic children are questioned by family service and child welfare bureaucrats with no real experience or knowledge of autism or what it means to raise an autistic child. In the everyday world some strangers will still look on disapprovingly when your child engages in public tantrum or other "odd" behaviour.

A further obstacle arises from those who should know better, the few parents of autistic children and some high functioning autistic adults, who glorify autism; presenting it as a positive even superior aspect of the human condition. These "posautive", or "neurodiversity" advocates react with outrage when other parents try to present the whole truth about autism. They reacted angrily, and shamefully, when parents in the Autism Every Day video told their stories. These brave and caring parents were accused of staging scenes for the video and mocked as engaged in self pity parties. All because they told the world the truth about their children’s autism.

Parents do not need self appointed internet autism experts from afar to tell them to find joy in their children. Nor do we need them to falsely tell the world that autism is all joy and wonder. It is not. Autism is a serious neurological disorder and the realities of life for autistic persons, particularly severely autistic persons, and their families can be hard. Parent advocates do not need sympathy or pity from the "posautive" crowd. Nor do we need their support. What would help is if they ceased creating a false picture of the reality of autism - as experienced by many autistic persons and their families.

The photos above portray the joy of living with my severely autistic son Conor, age 11 - a quiet moment with Nanny, some roughhousing fun time with Dad. But the third picture is that of a window broken by Conor this past Friday, broken with his hand as he rushed from one end of the house to the other. He cut his hand, though not seriously. The window was replaced (with car windshield type glass). But the fact remains that he could have hurt himself badly. And the fact remains that danger and injury are ever present realities that have to be contemplated much more frequently with our autistic son then with his brother who is not autistic. And it does become expensive repairing and replacing. My son's life experiences and prospects are not the same as the high functioning internet essay writers. His will be a life being cared for by others. After I am deceased I will not be able to fight for him or otherwise ensure that his best interests are respected. Conor is a joy, a great and tremendous joy, to our family. That is why we fight for his best interests now against immovable bureaucracies and against the false pictures of autism painted by internet autism glorifiers who do my son no favours with their false pictures.

Autism - Parents Can Be Prisoners

Her autism often prompts Kristi Jansen not only to bite her own knees, hands and feet but to pinch and bite her mother Sandy. She would pinch or bite Sandy up and down her arms 'really hard,' her mom says, and even while her mother slept.
Glenn Baglo, Vancouver Sun


The following excerpt from Part One of the Vancouver Sun's six part series Faces of Autism portrays the realities of life for many parents of autistic children. Sun columnist Peter McMartin, and photographer Glenn Baglo, are painting a graphic picture of the realities of life with autism. For doing so there will be outrage from the joy of autism crowd, as there was following release and showing of the Autism Every Day video, but Mr. McMartin is speaking the truth and painting an accurate picture of autism realities. The biting and other experiences described in this article have also been part of life in our household and in that of many other families with severely autistic family members.


Parents can be prisoners of child’s condition

Pete McMartin, Vancouver Sun
Published: Friday, April 20, 2007

Marriages and friendships come under great strain as the family’s time and energy is gobbled up by the disorder’s demands. Parents of children with autism are not like parents of typical children.

This truth is easily said but not easily understood.

Depending on the severity of their child’s condition, parents are prisoners to that condition just as their child is.

Their other children suffer unintended neglect because the child with autism commands so much of their attention.

Autism also puts its own unique strains on marriages. ....


http://tinyurl.com/yuuwvg

Autism Vox Falsus

There is in the world autism community, at least on the internet component of that community, a group which portrays itself as the true voice of autism. It is essentially an internet based community comprised of some high functioning autistic persons, some parents of autistic children, and some "professionals" including some psychiatrists and educators who oppose attempts to treat or cure autism. Self described as the Neurodiversity movement this group poses as human rights advocates for the autistic but often resembles a hate group in its personal attacks and demonization of any parent or group which attempts to find and fund treatments and cures for autism. Any mention of the serious challenges of the more severe forms of autism is attacked by the high fucntioning autism internet essayists. Even mentioning that some autistic suffer from cognitive deficits, even the use of the expression "low functioning autism" is met by hostility from the Neurodiversity advocates. Far from being the true voice of autism, Neurodiversity is a false voice; an autism vox falsus.

Parents across Canada and the United States and elsewhere in the world have fought hard to seek and obtain a better life for their autistic children through treatment and education. For their efforts they are mocked, ridiculed and demonized by the Neurodiversity movement . The core of the Neurodiversity movement is a number of high functioning autistic persons who do not wish to be cured of their autism. They view their autism as an essential component of who they are as individuals. That is a view point that I can and do respect. They have the right to wish to remain autistic. Where Neurodiversity becomes troublesome is when they fight to prevent parents from seeking cures and treatments for their own children and the demeaning tactics they use in doing so.

One of the Neurodiversity internet commentators who is generally more polite than most is Ms. Kristina Chew the mother of a 10 year old autistic boy, who holds a Ph.D and is a classics teacher. Although Ms Chew has in fact employed ABA interventions to assist her son she downplays that fact on her blog site “Autism Vox” where her guest commentators usually present a Neurodiversity anti-autism cure perspective. But, she is admittedly almost always exceptionally polite and diplomatic. That diplomatic bent changed dramatically this past week though with two comments from Ms. Chew about the Don Imus racism controversy. In these comments Ms. Chew made clear her animosity towards Autism Speaks and towards the parents in the Autism Every Day video.

"I really don’t have anything to say about Don Imus — I am no fan, to be sure — but living here in New Jersey, and my husband being a Rutgers alum — I have been appalled, or just outraged, at his use of “crude, offensive language” about the Rutgers women’s baskbetball (sic) team last Wednesday while discussing their defeat in the NCAA Women’s Basketball Championship.

I do not know understand how any national autism organization can be associated with someone who can use such hateful words."

http://www.autismvox.com/one-thing-don-imus-shouldnt-have-said/

“It should be noted that, just under a year ago, Imus’ MSNBC show broadcast A New Decade for Autism, a fundraising event at which the video Autism Every Day was first screened—a video which depicts life with autism as difficult (as it can be, but there are ways to change this, for sure) and hopeless; a video that was felt by more than a few autistic persons and parents of autistic children as portraying autism as horrrible and hateful only: No surprise, perhaps, that it had the endorsement of Imus.”

http://www.autismvox.com/in-the-wake-of-imus-ouster/

The heinous crimes committed by Autism Speaks? Raising money for research and treatment of autistic children. The Autism Every Day video consisted of parents telling of the challenges presented by their childrens’ autism. For that these parents, along with MSNBC and Autism Speaks , have been vilified by the Neurodiversity movement. Until this week Ms Chew and Autism Vox had been polite and diplomatic in expressing her Neurodiversity anti-autism cure sentiments. The language above though removes the pretence of civility from Autism Vox.

The use by Ms Chew of Mr Imus’ offensive personal comments to smear an organization and group of parents fighting to improve the lives of their autistic children is itself offensive.

Autism Vox? Autism Vox Falsus is more like it.

Raising An Autistic Child - Reality Check # 1

Raising an autistic child brings both great joy and great challenges, for the parents and for the child's brothers and sisters.

As a father nothing lifts my spirits more than arriving home after a tough day at work and seeing Conor's face pressed against the window waiting for Dad. I went to a local pub to watch the Toronto Maple Leafs - Montreal Canadiens hockey game two nights ago and returned after my sons were asleep. I found out the next day that Conor had tried to summon me home the evening before by asking Daddy, Daddy and when that didn't work taking his mom's hand and walking to the front door saying Harold Doherty, Harold Doherty. I can not tell you how much Conor strengthens his Dad every single day.

Yesterday was a big Dr. Seuss day for Conor and he pulled out one favorite after another to read -Cat in the Hat Comes Back, Hop on Pop, Oh Say Can You Say, I Can Read with My Eyes Shut. I can not describe the joy that I feel with every word that I hear Conor read.

Yesterday Conor wanted tickles. His laughter from playing tickle games is totally infectious. Conor also decided to lean back on the two rear legs of one of the kitchen chairs. When Dad told him "chair, floor" he put the chair fully on the floor on all four legs. Then he leaned back again. I walked around the corner of the kitchen entrance and Conor leaned back again. When I popped my head around the corner he laughed in suprise. We did that several times. Although I was trying to correct his behavior so the chair would not be ruined and he would not be hurt by falling back to the floor I could not help but laugh and take joy in this game of peek a boo, a game which Conor did not play at an age most children would have begun playing it.

Despite the great joy, the happiness and the pure all out fun that raising Conor brings there is very a dark side to the reality of autism and raising an autistic child. The courageous parents of the Autism Every Day video presented that reality for all the world to see - and judge. Two days ago while I waited with Conor at a local mall while his brother completed a transaction (involving trading in of old video games for a new WII Warrio game) Conor, understandably, had a small meltdown. The mall was crowded with people shopping while the stores were open on the long holiday weekend. Most people even encountering a tantrum are understanding but some are quick to judge even if they do not dare voice their judgment. One gentleman walked by with a disapproving looking back as he walked and while Conor engaged in a tantrum. For me, such uninformed judgmental behavior is not a big deal but it happens to many families with autistic children and it does wear down many families as a recurring stressful situation in their lives.

On the difficult side of raising a child with autism, or at least a child with severe or classic autism, is the self injury and injury to others that sometimes occurs. There are times when Conor's behavior is flat out dangerous. Yesterday Conor unexpectedly and with no provocation lashed out and hit his brother on the leg. His brother was not hurt but it was still an assault and Conor is growing bigger and stronger. A potentially more serious event occurred during that same drive when Conor threw an object past my ear while I was driving. That is part of the dark reality of autism for many families - the potential or risk or injury to family members including brothers and sisters. Yesterday's drive was a reality check. It is the type of reality you will not hear about from feel good about autism web sites, movies or television shows but it is real and it is a reality that parents and families of autistic children can not wish away or avoid.

Attached is a link to, and an excerpt from, an article by David Royko which describes some of these realities as he has experienced them.

http://tinyurl.com/2w2sf5

What It's Really Like To Raise a Child with Autism

My son is 8 and big for his age, but he acts like a toddler -- tantrums and all.

By David Royko

I set my sights on the turn in the road up ahead, hoping Ben will somehow see the slight change of direction as a good place to turn around. He doesn't, and we don't. I become more and more concerned, finally turning back myself and saying, "Okay, Ben, I'm going back now. Bye-bye." Luckily, he follows me.

My good mood restored, we are about three minutes into our long haul back when the tantrum begins. Actually, the word "tantrum" doesn't really do justice to what's happening. Some behavioral specialists use the term "behavioral seizure," which, in its clinical cleanliness, also misses the mark. I have yet to come up with a phrase that captures it. It's one of those things where "ya hadda be there."; But you don't want to be.

Ben stops walking and starts hopping on one foot. He screams and hits himself with full force on the sides of his head. He bends forward at the waist, flings himself back up, screeches loudly, smashes himself in the face with his left hand, and then sobs, all in about five seconds. Uh-oh. I realize we have gone too far.

I grab him by the wrists and say, "Come on, Ben. We have to walk to the car. No hitting." He screams again. He shifts into dead weight and crumples to the ground. Now he is on all fours on the sidewalk, slapping himself in the face.

Autism Is a Disorder, Not Just a Different Order

Denial is one of the first problems encountered by parents of newly diagnosed autistic children. The challenge of facing up to the reality of an autism diagnosis for your child is huge. Once a parent gets past the denial stage they must deal with helping their child to the fullest extent possible. There is no doubt amongst those who seriously seek improvement in the abilities of their autistic children to live a full and happy life that intensive early intervention is absolutely necessary. Nor is there any serious doubt that behavioral intervention is the only evidence based intervention currently available to help your child. But for the parent starting out on that effort you will receive some misleading signals from advocates of the "neurodiversity" movement. Although much of the rhetoric emanating from the neurodiveristy direction is confused and contradictory, in its essence neurodiversity states that "autism is not a disorder, just a different order" to use the words of a high functioning autistic person who called into a CBC radio talk show on the subject of autism.

The neurodiversity movement, if it presented the positive attributes of people who happen to be autistic, or presented the whole picture of autistic persons on all points of the spectrum, could be a positive force for bettering the lives of autistic persons. But it does not do these things. What the neurodiversity movement tries to do, at its heart, is convince the world that autism is not a disorder. Part of this effort involves demonizing anyone who describes some of the unpleasant truths associated with some cases of autism. This occurs when such unpleasant topics as feces smearing, self aggression or other acts of violence are discussed realistically by parents such as the courageous parents of the Autism Every Day video.

We have experienced these unpleasant truths in our household. Our autistic son, Conor, is a joy, a blessing. The numerous posts on this blog site about Conor present the joyful element of our son. But the reality is that he also can become aggressive, pulling on his mother's hair suddenly or biting. These are truths, unpleasant truths but truths nonetheless. Our furniture is largely in shambles with legs broken off chairs, mirrors shattered, cabinet and closet doors unhinged, keys removed from computer keyboards. I have experienced an arm coming suddenly around my neck from behind while driving the family car.

Describing such truths is not dehumanizing our son as the neurodiversity authors, would have you believe. It is speaking the truth and describing the facts as they are not as we would wish them to be. It is not a violation of Conor's human rights to describe him, and his autism disorder, in honest realistic terms. To the contrary, it would be a gross violation of his human rights to disregard the challenges he confronts by virtue of being autistic and failing to take steps to remedy those challenges using interventions judged effective based on the best available evidence.

The neurodiversity movement is proud of those high functioning autistic persons who can write lengthy articles on internet sites, speak to courts and legislatures, and make interesting interesting internet videos. It also likes to embrace and diagnose as autistic historical figures of great intelligence such as Albert Einstein. But the neurodiversity, autism acceptance, movement does not like to talk about lower functioning autistic persons or the very real challenges faced by families who actually care for and live with lower functioning persons. Worse that that, as the Autism Every Day parents, and a host of other parents trying to help their autistic children have discovered, they do not want anyone else to talk about these realities either.

The neurodiversity movement does not represent the views of all autistic persons. It represents the views of SOME autistic persons, some, not all, high functioning autistic persons. These individuals, and the handful of misguided professionals who adopt their point of view, would have you believe that there are no low functioning autistic persons, that it is wrong to even use such terms as high functioning or low functioning. They do not want to acknowledge that some autistic persons are intellectually impaired. They do not want to talk about the autistic persons who actually live in institutions around the world in less than pleasant conditions, including here in New Brunswick Canada.

At its heart neurodiversity is an internet movement based on a group of people who share in common a diagnosis of a medical disorder - autism - but who refuse to accept that autism is a disorder. Neurodiversity is for this reason inherently a contradiction but one that can be very misleading in the view of autism that it presents to the world.

The DSM-IV diagnostic criteria:

# A total of Six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3).

1. qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to development level
3. a lack of spontaneous seeking to share enjoyment, interest, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
4. lack of social or emotional reciprocity

2. qualitative impairments in communication as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alterative modes of communication such as gesture or mine)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotypes and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects

# Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

# The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder

Autism is a different order but it is also very much a disorder. The DSM-IV says so. My life experience with my profoundly autistic 11 year old son confirms for me that fundamental truth.

Autism Speaks Is At It Again

Autism Speaks is at it again. Autism Speaks has been talking the talk, raising awareness for autism, with a variety of projects, including the reality based video Autism Every Day, which examines some of the realities of severe autism, and raising funds for autism research. But Autism Speaks is also walking the walk to raise autism awareness and funds for autism research at walks across the US including March 31 walks in West Texas and Oklahoma City, April walks in LA, Broward County, Nebraska and Allentown and the annual Long Island Autism Walk in October, purportedly the largest autism walk in the world, with 20,000 participants in 2006, raising $2,000,000 for quality, peer-reviewed autism research. The complete schedule of Autism Speaks Walk Now for Autism walks can be found at:

http://www.walknowforautism.org/site/c.grKPI2PCImE/b.2485123/k.BD69/Home.htm

A Mother Describes Some Unpleasant Autism Realities

CAUTION: The attached article from the Daily Record in the UK describes in graphic detail some of the realities of living with, loving, caring for and actually raising a severely autistic child. The realities described in the article are not the sweetness and light version of autism popular on many internet blog sites. They are realities similar to those described by the parents of the Autism Every Day video who were vilified because they described them publicly. I love my son with all my heart but I can confirm as the father of a severely autistic child that I have experienced and seen much of what is described in this article. For those who are offended by unpleasant truths about autism, skip this article.

http://tinyurl.com/25xz6p

13 March 2007

DAILY HELL OF LOVING A LITTLE BOY WITH AUTISM

He bites, kicks and punches. He has torn down the curtains, broken a tumble dryer, flooded the house, binned all his clothes and wrecked doors and a bed. He slashed a sofa and ate the foam. Ian is just SIX
By Natalie Walker

DESPERATE mum Linda McIntyre told yesterday how she feels she has been abandoned with her acutely autistic son.

Single mum Linda, 42, is near breaking point trying to cope with six-year-old Ian, who suffers almost constant violent mood swings because of his condition.

She says the lack of support - coupled with cruel comments from strangers who do not know about Ian's condition - has left her at the end of her tether.

Ian was diagnosed as autistic at 18 months but Linda says social workers and education chiefs have turned their backs on him.

Since he started school last August, she has been asked to take him home 25 times and is now caring for him round the clock.

Linda, from Balornock, Glasgow, said: "It's one thing after another and I don't know how much more I can take. I keep thinking of that mum who killed herself and her autistic son by jumping off a bridge. I know why she did it."

Mum-of-five Alison Davies, 40, of Stockport, Cheshire, leapt to her death with her son Ryan, 12, from the Humber Bridge last year.

Her friends said she had been let down by social services.

Linda said last night: "I just don't want to get to that stage. But without some more help and support I only fear the worst.

"And it would help if people who see mums and dads with kids who are playing up would think twice before judging.

"It is likely that child has a disability like autism, so they should think before they say anything."

Mum-of-two Linda says she has no social life and it is more than a year since she had a night out. She added: "I am at breaking point and I feel like I have nowhere to turn.

"I just wish the people who are so quick to judge me and Ian would spend a day in our shoes.

"They'd never cope. But it would let them realise that Ian is not a bad boy, he is ill.

"That is why he kicks and bites and screams. He can't help it.

"If I could wave a magic wand and make it all go away, I would. But I can't.

"I love my son to bits and will fight to defend and protect him like any mother would."

In recent weeks, life has become even worse for Linda, whose daughter Melanie, 20, lives in Preston, Lancashire, with her boyfriend.

She was called to Ian's special needs school to be told he had been playing with a guillotine.

Since then, she has refused to let Ian go back to Glasgow's Gadburn Primary School as she fears for his safety.

She said: "Every day, there are new challenges to face and every day is like climbing a huge mountain.

"Ian has no sense of fear and you have to keep an eye on him all the time. He'd jump out of a window or cut himself or throw himself off something for fun. He has no idea it could kill him."

Ian has also started copying behaviour he has seen at school, biting, kicking and punching people, including Linda and her disabled uncle.

He has torn down two sets of curtains, broken the door of the tumble-dryer, flooded the kitchen and bathroom floors and thrown almost all his clothes in the bin.

The six-year-old has also broken a bed, bashed in the living room door, slashed open a sofa and tried to eat the foam from it and covered sheets and carpets with make-up.

His mum has had to tie ropes to all the doors and windows of their three-bedroomed home to stop him hurting himself.

On top of this, she has to change his clothes up to nine times a day because he is incontinent. Sometimes, he goes to the toilet on the floor.

And Linda can't remember the last time she had a proper night's rest as she can spend up to five hours trying to get Ian to go to sleep.

She said: "Things are now so bad that there are days when I do think the worst. I used to be able to go out with Ian but not since he started school and picked up bad habits.

"I don't drive, so we have to get the bus. But the last time we were on one, Ian started pulling people's hair.

"I can't even go out shopping with him because he hits total strangers.

"The other day, he punched an older lady in the stomach. Her husband went absolutely crazy at me.

"And when we were in the supermarket the other day, Ian started banging his head off the floor and started this high-pitched scream.

"Within seconds, there was a huge crowd around us. Someone chirped out that I was a terrible mum and should not let my son do this.

"It is only when I screamed out that he had autism that they stopped staring and walked off, feeling guilty. This happens all the time we are out."

In the last four years, Linda has only had two days of respite care offered to her, when a couple took Ian to their home to give her a break.

She has been begging for meetings with social work and education officers since last December to try to get more help. And she is furious his school keeps sending him home.

Social workers have also refused to give her cash to repair broken locks and her tumble-dryer.

Linda said: "They say they are not essentials. But they should try living with an incontinent child."

The mum noticed Ian's behaviour changing since his MMR jab, she says.

She added: "Until then, I had a loving wee boy. And then it was like one day he went into his own world. He wouldn't hug me or speak or even look at me. It was heart-breaking.

"To this date, I have never been able to prove it was the MMR but I am convinced it is to blame."

The National Autistic Society say they get thousands of calls a year from carers suffering from depression and feeling the strain of looking after someone with autism.

A study by the charity discovered only 15 per cent of parents received any support from social services.

And it highlighted how a third of families waited more than a year before their children received support at school.

There are about 45,000 autistic children living in Scotland and experts believe the condition is becoming more common, affecting 50 in every 10,000 children compared with five in 10,000 some 20 years ago.

A spokeswoman for Glasgow City Council said: "Ian's school has been working closely with Mrs McIntyre over the past few months to address Ian's additional support needs.

"A multi-agency meeting has been arranged for next Tuesday which will give further consideration to the supports required in both the school and home setting."

The National Autistic Society helpline is on 0845 070 4004.

For Severely Autistic Children - "Nothing is going to change if people don’t know what’s going on"

“Nothing is going to change if people don’t know what’s going on,”

- Michele Iallonardi of Hauppauge, a mother of three boys with autism

The above quote from the New York Times review of the Autism Speaks film "Autism Every Day" which will be featured, starting today, at the Sundance Film Festival, explains exactly why it was necessary for the parents of severely autistic children who appear in the film to describe some of the unpleasant realities of their childrens' severe autism and life for family members who care and love those children. As a father of a severely autistic 11 year old boy who, like his non-autistic brother, brings me joy and lifts my spirits every day for the past decade and more, I applaud their efforts. And will do so again.

As expected the film has drawn criticism from those who wish to pretend that autism, even for those with severe cases of autism, is beautiful. There are those who want everyone to think that autism is NOT a disability or a disorder, that it is just another variation in the human condition with no negative aspects to it. The more extreme amongst the Autism is Beautiful crowd have attacked anyone who advocates for health and educational interventions to improve the lives of their own children. To the extremists attempts to cure or educate autistic children, to give them the skills to function alongside other members of society is akin to a form of abuse; an attempt to steal from autistic children their true nature.

"For Sundance, the piece was expanded to 44 minutes, still focusing on more impaired children. They are the ones, as Ms. Singer characterizes them, “who don’t make enough progress to be mainstreamed, who continue to struggle, who still have such challenging behaviors.” “That’s why we made this film, to tell their stories,” she said.

It is a story that must be told and retold. There are indeed Autistic persons of high intelligence, some of whom write fine essays of their appearances before courts and parliamentary tribunals. But they have little in common with severely autistic children. It is the parents of such children who must tell THEIR stories openly and honestly so that people will know. It is the parents of severely autistic children who love and care for them, 24 hours a day, seven days a week, and know the true stories of their childrens lives who must speak up. We must tell their stories. Otherwise, as Ms. Iallonardi has said "nothing is going to change".

http://www.nytimes.com/2007/01/21/nyregion/nyregionspecial2/21lifilm.html?ref=movies

Autism Every Day - The Realities of Raising Severely Autistic Children

The film Autism Every Day will soon show - January 22 and 27 - at the Sundance Film Festival. Like many efforts to treat or educate autistic children or to speak about the realities of some autistic persons this film has generated criticism amongst some autistic persons, caregivers and professionals who do not believe that Autism is a disorder. From that perspective autism is simply a variation of human existence neither inherently better or worse than any other variation.

Personally, as the parent of a severely autistic 11 year old boy who I love with all my being, I appreciate the courage of the parents in the film who have told the stories of their children, and their families, for the world to hear. The world should understand that, while there are many very intelligent, articulate and talented persons with autism, there are also many autistic persons with severe intellectual, communication, sensory and behavioral challenges. These challenges pose serious risks to the health, safety and lives of the autistic children themselves and to family members. The reality is raisng and genuinely caring for severely autistic children takes an enormous toll on families, even with the great joy which the same children can bring to our lives.

I have not seen the entire 44 minute version of Autism Every Day. I have viewed the shorter version, which is on line at the Autism Speaks web site, and can be found at this link:

http://www.autismspeaks.org/sponsoredevents/autism_every_day.php

I thank the makers of Autism Every Day the parents who appear in the film, their autistic children and other family members for describing their realities, their challenges.