Timing: Joy of Autism Nonsense and Sad News of Missing Autistic Children

 

The news continues to look frightful and grim for the  3 year old autistic boy near Montreal who went missing while his father was in a friend's house for a few minutes and where authorities have now called off an intense ground search and hope is fading. A few days ago a six year old autistic boy in Melbourne Australia who went missing from his home was struck and killed by a train.  Meanwhile Canada's Joy of Autism movement is once again pushing its bizarre view that autism  disorder is not a disorder at all it is , as stated by  Estée Klar, a Joy.  The mother of an autistic child actually thinks that autism is a joy.  The parents and family members of the 3 year old boy near Montreal, the 6 year old boy near Melbourned, of young James Delorey who perished in winter weather last year in Halifax might disagree with her "logic" in describing autism as a joy.  

I most certainly disagree. I am the father of a severely autistic boy and  could have lost him several  years ago when he slipped out of the house and attempted to cross a very busy street stopping traffic until a good Samaritan stopped and took him to a nearby convenience store and 911 was called. I remain very grateful to that gentleman and to the police for bringing my son to safety. I would never, ever embrace the fuzzy logic that results in calling autism disorder a joy.

Estée Klar has published her support for a coalition of advocacy organizations that object to the attempt to codify wandering as a separate criteria for autism.  Research  they say, research is needed. Yeah right.  Let's take 10 to 20 years and conduct methodologically unsound statistical surveys and call them science while we ignore the current evidence of harsh realities that wandering behavior in autistic children results in. In the meantime Estée can lecture us on how autism is  joy not a disorder. 

Many autistic children and adults are prone to wandering from their homes and caregivers. That is an unpleasant reality that should be made known to the parents of newly diagnosed children and professional caregivers now, so they can take steps to protect the autistic children and adults in their care, now, not 20 years from now.We don't need more autistic children wandering away and coming to harm.

Autism Reality in Nova Scotia: Jim Young Delivers Autism Truth, Straight Up, With No Joy of Autism Sweetener

I met Jim Young a couple of years ago, May 26, 2007 in Dartmouth, Nova Scotia, at the FEAT-BC Goes Coastal kick off of the national autism strategy campaign. Jim and I had a chance to talk briefly. He got straight to the point in discussing autism and the state of autism advocacy in Nova Scotia. In a guest column in the Halifax Chronicle Herald Jim once again delivers hard hitting autism reality without any sugar coated joy of autism nonsense.

Jim offers the perspective of a father of an autistic child who fights hard to make life as good as he can for his child. He has done his homework on a number of contentious autism issues and he has been an active autism advocate. In this article Jim addresses many of the contentious autism issues that hinder the ability of parents to help their autistic children. He offers his views on autism cures and treatment favoring an evidence based professional treatment that stands out above all others at this time - Applied Behavior Analysis - ABA.

Jim expresses his admiration for high functioning autistic persons who do well in the world but pulls no punches about the leaders of the Neurodiversity ideological movement and the threat they pose to the health of our autistic children:

The neurodiversity proponents do not represent the realities faced by the majority of families. My view is that they represent a real threat to the health of our children. Not only do they imply that it is fine to have autism but they urge us to "celebrate" our children’s disorder. Nonsense. Should we "celebrate" juvenile diabetes, leukemia, pediatric aids, fetal alcohol syndrome?

I can testify that there is very little about autism to celebrate. I love both of my children and could not love my daughter, who is deeply affected, any more if she woke up tomorrow without autism. But I will continue to advocate and provide treatment opportunities for her forever, despite what these people say.

Autism is a serious health issue requiring aggressive treatment. It is not a learning disorder, lifestyle choice or expression of individuality. The risks of claiming that it is, for the rest of us, are that it provides government just the excuse they need to withhold funding – the community is divided and the disorder is not an alarming epidemic. These people need to shut up. They do not represent the children with autism that I see. They represent themselves, which is fine, but no one else.

Jim Young also takes the Nova Scotia government to task for its immoral, shabby treatment of autistic children. (Nova Scotia actually has a lottery system to determine which children receive autism treatment). Jim Young is a dad who has actually been fighting to help his autistic daughter and other autistic children in Nova Scotia. He has been fighting an uphill battle but he soldiers on.

I encourage anyone interested in autism, particularly parents of children newly diagnosed with an autism disorder to read Jim's column in the Chronicle Herald. It offers a healthy dose of autism reality, straight up, with no joy of autism, neurodiversity nonsense, to divert you from helping your autistic child.

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If Autism Is A Joy Why Is It In The DSM?

If autism is a joy, a simple natural variation that brings with it many blessings, then why is it found and described in the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association?

Why are children as young as 2 years of age diagnosed with autism spectrum disorders ... Pervasive Developmental Disorders? Why do parents take their children for medical assessments that result in "autism spectrum" diagnoses? If their condition was one which brings such great joy then why visit a doctor to discuss it?

I am one of those old fashioned males who doesn't particularly like visiting doctors' offices. I will probably live a somewhat shorter life than I otherwise might because I just don't like going to see the doctor on a regular basis. I can not imagine going to a doctor to have him/her examine, assess or diagnose .... a joyful condition. What would possess some of the persons assessed as adults with autistic disorders to attend at the offices of a medical or psychological professional for an assessment of a joyful condition subsequently diagnosed as autistic disorder?

If the medical model of autism is to be cast aside, as those in the ASAN/Neurodiversity movement headquarters at the Change.org "autism" page advocate, then why refer to autism, a medical term, at all?

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Autism Reality In Australia and New Brunswick But Not On The CBC

If you follow the CBC's irresponsible promotion of the joy of autism ideology (Rethinking Autism, Positively Autistic) you wouldn't know that autism disorders are actually mental disorders that mean very difficult lives for those with low functioning autistic disorder. In Australia an all too common example of autism reality is reported by Michelle Hoctor in Autism sufferer dealt a double blow.

Ms Hoctor describes the autism reality of Kate Southern, 35, who lost her mother and primary carer to brain cancer earlier this week. Now she is due to be relocated to a group home in a location some distance from her remaining family members. After visiting and viewing the group home Ms Southern has begun tearing her hair out in clumps.

The challenges faced by Kate Southern are not uncommon to severely autistic persons. They occur here in New Brunswick Canada where an inadequate residential care system for autistic adults results in adults living on hospital wards, shipped out of the country or living in group homes with untrained staff, one of which recently closed on 24 hours notice.

The realities of autism aren't discussed much by the Toronto art gallery crowd at the Canadian Broadcasting Corporation that like to promote the autism is beautiful ideology of a few persons with Aspergers and High Functioning Autism.

Maybe someday the CBC "journalists" will Stumble Upon stories of lower functioning autistic persons like Kate Southern in Australia or Tiffany Pinckney in Toronto.

Maybe they will get away from their desks and examine all aspects of the autism spectrum of mental disorders.

Maybe the CBC "journalists" will discover the autistic persons who don't appear several times a year in media interviews because they live in residential and institutional care and can't communicate or understand the ideology that says that Autistic Disorder is not really a disorder after all.

Maybe, but I won't hold my breath waiting.

I will thank Michelle Hoctor and IllawarraMercury.com for some real autism reporting.

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Autism Confusion

Parents across North America have been fighting hard to help their autistic children overcome the deficits associated with their autism disorders. These parents, and I am one of them, find joy in their children and want to enhance their abilities to live as full a life as possible. But there are some misguided exceptions, who find joy in their children's autism disorders.

The logic of the "Be Happy Your Child Has a Neurological Disorder Movement" is difficult to comprehend. These parents are actually happy that their children suffer from autistic deficits. The more extreme amongst them, like Estee Klar-Wolfond of the Joy of Autism, The Autism Acceptance Project, and other "projects", actually try to undermine the efforts of other parents seeking to help their own children overcome their deficits.

The confused thinking of the joy of autism mindset was highlighted in a recent letter to the editor of the Lebanon Daily News by Bonnie Price, mother of a 16 year old autistic boy who can not talk and who has the intellectual level of a 3-4 year old . Ms Price actually thanked God that her son is autistic even though she acknowledges in her letter that autism is a terrible affliction. Caring for her son has made her a better person and for that Ms Price expresses gratitude that her son is autistic:

Thank God for autism

Editor:
Lebanon Daily News

My son, Seth, is almost 16. He was born with classic autism and mental retardation. His mind is that of a 3- or 4-year-old. He cannot talk at all, and he can never be left unattended. So why in the world would I say “thank God for Autism?”

Seth has taught me the meaning of unconditional love and brought a closeness to our family that could not have been but through trials. When he was 3, his natural father and I divorced. Were it not for autism, he may have fought for custody. Were it not for autism, I probably would have worked 40+ hours a week in pursuit of material possessions and never had learned to enjoy the simple life God has blessed us with. Were it not for autism, I may have ended up cold and indifferent to the needs of others.

We have witnessed the compassion, caring and generosity of others that we may otherwise not have seen. So, for all the misery of autism (and it is a terrible affliction), I am still deeply thankful God made Seth just the way he is. Seth is a beautiful person with autism.

Thank God for autism!

Bonnie Price

Edward Boehler, father of an 8 year old autistic boy took offense to Ms Price's expression of joy that her child is autistic as he stated in a response to Ms Price also published in the Lebanon Daily News:

Finding no joy in child’s autism

Editor:

Lebanon Daily News

I respond to Bonnie Price’s “Thank God for autism” on Sept. 29. I have an 8-year-old boy with autism, and I was more than offended by her letter. Unlike her son, my boy can talk. He attends regular school classes with an aide. He loves to swim and ride his bicycle. He loves video games and playing on the computer.

I have a beautiful daughter, too. She is wonderful. She is full of life and is very athletic and bright. My two children are the joy of my life.

Price stated that her autistic son has taught her the meaning of unconditional love. I think all parents have unconditional love for their kids. If they didn’t, there’s something wrong.

She stated that if it weren’t for autism she probably would have worked 40 hours a week in pursuit of material possessions. Is she saying working your butt off in sacrifice to support your wife and kids is a bad thing? Working 40-plus hours a week has bought a house for my family, clothing and bikes for my kids, a swimming-pool membership and cars to drive my daughter to soccer and basketball practices and games.

Autism is horrible. My son has no real friends. He will probably be made fun of when he gets older. He never asks questions. He won’t play soccer, basketball, baseball or football with me. Autism is horrible !

I love my son to death. Seeing him smile or laugh really makes my day. Thank God for Autism? Those are four words that will never come out of my mouth. I thank God for my two great kids, not for my son’s mental disorder.

Edward Boehler

I concur with Mr Boehler.

I love both of my sons including Conor who is severely autistic. I enjoy being with him every day. But I am not happy that he has autistic disorder. I find no joy in the knowledge that he will, like some other severely autistic persons, live his adult life in the care of others. Or that he can not fully communicate or comprehend the world. Joy of autism disorder is a confused, and sometimes harmful, mindset to which I will never belong.

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Missing Autistic Teen Found Safe In Minnesota

A 17 year old autistic girl who went missing in St. Paul Minnesota has been found safe in Eagan Thursday morning about 24 hours after she left her home early Wednesday. The police do not know where the young woman stayed over night. Kim Stagliano at Age of Autism blogged this story under the appropriately sarcastic title More Joy of Autism: Another Lost Child.

I too find it difficult, OK impossible, to refrain from sarcasm, and other negative forms of expression, when mentioning the "Joy of Autism" nonsense promoted by Estee Klar-Wolfond and other bloggers who argue that autism, a neurological disorder, should be celebrated. That a parent can celebrate the fact that their child has a neurological disorder that will impair and restrict his or her life is beyond my comprehension. I have written on this subject several times including in Joy of Conor, Why I Find No Joy In Autism - Biting and Other Self Injurious Behavior, and Autism Reality On The Road . Conor has gone missing in the past and when it happened it terrified me and each story of a missing autistic person hits me hard in the gut. He has injured himself with biting and on occasion his mother with hair pulling. These are not events to celebrate.

I find great joy in Conor, my buddy forever, but not in the autistic disorder which limits his life experiences so drastically. I will never surrender to the muddled thinking that would have me confuse joy in my son with joy in the autistic disorder which marks his life so seriously.

I am happy that the 17 year old in Minnesota was found safe.

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Autism As Disability and Disorder - NOT Deviance

Leave it to Estee Klar-Wolfond host of "The Joy of Autism" to get it wrong again. This self appointed expert on autism actually celebrates autism - a disorder which impairs and restricts the lives of many with Autistic Disorder. And her absurd views of autism are reflected in her response to the speech by Reverend Jeremiah Wright to the NAACP.

In my son's case he can not be left unattended at any time. He can not be left to wander to the end of our neighborhood street unaccompanied without risking his life. Yet this person lectures parents like me that we should find joy in our children's disability. I can not hide my lack of respect for her point of view. It is sheer and utter nonsense and I will not pretend otherwise. Whenever I read of an autistic child gone missing, sometimes thankfully returned to safety, sometimes not, I think of this person's perverse ideology which celebrates disability as something joyful. I am not surprised Estee Klar-Wolfond would seize on Rev. Wright's remarks as she has in her comment titled "Difference Is Not Deviance". Here is a big tip for Ms Klar-Wolfond. I know of no single person who accuses autistic people of being deviants. Not one.

Ms Klar-Wolfond takes issue with other parents who describe their children as ill. Like many who subscribe to the Neurodiversity Ideology that worships autism as a culture or way of life Ms Klar-Wolfond takes exception to those who describe autistic disorder as a ... disorder, a disability, or a disease. What Ms Klar-Wolfond and other ND adherents ignore are the hard realities of autistic children, like my son, who can not walk to the end of our neighborhood street alone for fear of serious injury or death. Nor do they talk much about the autistic persons who hurt themselves even causing brain injury or starve themselves. It is easy to see autism as a joy as Ms Klar-Wolfond does when you simply ignore the unpleasant realities lived by some persons with autism and hang out on the internet with some high functioning persons who write great essays and appear before courts and parliamentary bodies.

Here is another little tip for Ms K-W and the rest of the ND ideologues. If someone is called autistic it is because they have received a medical diagnosis that they have one of the Pervasive Developmental Disorders. They would not have acquired such a diagnosis if everything was joy and bliss in their lives. They acquire such diagnoses, most often as children, because of serious language delay and other serious developmental and behavioral problems. Joy? Not at all. Deviance? No, not that either. Autism is a disorder and a disability and it is also called a disease by medical professionals whose opinions were sought by parents in respect of their children.

Ms Klar-Wolfond is "happy to announce" that she is "a new graduate student of Critical Disability Studies at York University". Congratulations to Ms Klar-Wolfond on acquiring entrance to another university degree granting program. Hopefully the learned professors who mentor Ms Klar-Wolfond will understand that race and religion may not be the most apt comparisons for disorders and disabilities. People of different races and religions suffer when people create obstacles and hardships for them because of their differences. Their races and religions impose no restrictions or impairments on their lives.

People with disabilities and disorders suffer when the physical world, genetic and environmental, create obstacles and hardships for them. Their own disorders and disabilities do in fact impose restrictions and impairments on their lives. Therein lie the "differences" between race and religion on the one hand and disability and disorder on the other. Hopefully the professors and mentors at the York University Critical Disabilities graduate studies program understand these distinctions even if Ms Klar-Wolfond does not.

My son is diagnosed as having Autistic Disorder, assessed with profound developmental delays. He has a disorder, a disability. He is not thereby deviant. And it is silly to suggest that anyone in the real world equates autism with deviance.

autism

Autistic Woman Starved to Death in Ontario

In Toronto the trial of 32 year old Allison Cox, on charges of manslaughter and failing to provide the necessities of life for her 23 year old adoptive sister Tiffany Pinckney has begun. The prosecution, as reported in the Toronto Star, has stated that Ms Pinckney was found lying dead in her own urine and feces, weighing 84 1/2 pounds down from 200 pounds. The Star also reports that Ms Pinckney was a non verbal autistic person, who although toilet trained, functioned at a mental age of about 3.

The court will determine Ms Cox's guilt or innocence on these charges. But regardless of that legal determination this situation should be one more example to illustrate the foolishness of those who persistently advocate for the view that autism is not a disability. Ms. Pinckney was dependent on the good will and sense of responsibility of others because of her autism, her intelligence deficit and her lack of verbal abilities. And now she is dead, starved to death at age 23.

There are high functioning autistic persons who accomplish great things in life and some who get interviewed on CNN. And then there are more severely autistic persons like Ms. Pinckney who are vulnerable and dependent on the good will of others.

There was no Joy of Autism for Tiffany Pinckney.

Shades of Autism Denial

Much has been made in recent weeks of the denial by John Travolta of his son's alleged autism. I do not know if his son is actually autistic although a lot of people certainly seem to think that he is. Some of the language directed at Travolta by inter-net bloggers has been pretty rough. The general gist of the accusations is that Travolta is prevented by his Scientology beliefs from acknowledging that his son is Autistic. Dr. Deborah Serani authors a blog called Dr. Deb and provides a fairly gentle treatment of the issue when she says:

I feel sad about this because there are some treatments for Autism that would not involve medication - something Scientology disdains. For example, Applied Behavior Analysis would be helpful. But the religion denies the existence of any mental/neurological disorders, so it seems that nothing will be done for this boy.

http://drdeborahserani.blogspot.com/2007/06/autism-and-denial.html

Dr. Serani raises an interesting point about denial and the failure to utilize Applied behavior Analysis (ABA) a helpful intervention, which is to date the only treatment which meets the evidence based standards for effectiveness in treating autism. But there are different types and shades of autism denial. There is, unfortunately, a school of thought amongst some parents of autistic children, albeit a very small group, which says that autism is not a disorder, it is simply a natural variation, a different way of being neither better nor worse than any other variation of the human condition.

According to this point of view parents who seek to cure or treat their children are failing to accept their children for who they are; we are failing to embrace our children's autism and therefore we are not accepting our own children since their autism is the essence of who they are. One of the better known advocates of this "acceptance of autism" is Ms. Estee Klar-Wolfond who publishes a blog site called "The Joy of Autism". It is difficult to be more aptly descriptive of Ms. Klar-Wolfond's brand of denial than the title she has chosen for her blog site. Ms. Klar-Wolfond celebrates her son's autism, chastises parents who speak truthfully about their children's autism by describing it as what it is - a disorder, or describe truthfully the very serious and harmful deficits that can accompany autism. The Joyful perspective Ms. Klar-Wolfond professes to embrace does not prevent her from persistently attacking parents seeking to treat their children with Applied Behavior Analysis.

There are different shades of denial. Mr. Travolta is reported to deny that his son is autistic. Ms. Klar-Wolfond accepts that her son is autistic but denies that his autism is a serious neurological disorder that should be cured or treated. In both cases their children will be denied the benefits that could be realized with ABA intervention.

Sad, in both cases.