Autism Reality

AutismRealityNB Stanley Cup Prediction – Ottawa Wins Stanley Cup 4 Games to 2

You heard it here folks. Ottawa Senators will win the Stanley Cup 4 games to 2 over the Anaheim Ducks. Sorry to break the news to Anaheim Ducks fans.

May 28, 2007 Posted by | anaheim ducks, autism reality, ottawa senators, prediction, stanley cup | 3 Comments

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.

April 29, 2007 Posted by | autism awareness, autism disorder, autism every day, autism reality, Conor, high funcitioning autism, neurodiversity | 3 Comments

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. ….

April 21, 2007 Posted by | autism awareness, autism disorder, autism every day, autism reality, family | 2 Comments

Ultimate Autism Reality Check – Autistic Children Become Adults

414 Bay Street,
Saint John, NB

Much of the autism discussion found on the internet does not seem directed at the very real concerns of families raising autistic children. Little of it provides practical assistance for the very real challenges facing families with an autistic child to raise and care for. The same is also true for the mainstream media. Despite all the attention generated by Autism Awareness Month in the US and the good efforts by the people at Autism Speaks, Oprah Winfrey and the View, there is very little coverage of, discussion of, or even acknowledgment of the realities of life that await autistic children, particularly those with severe intellectual, communication and behavioral deficits when they grow older, when they become youths and adults.

In New Brunswick Canada our residential care and treatment capacity is extremely limited. Information is not readily available to autism organizations about what facilities and services do exist. Requests for feedback sent to residential care home operators by the New Brunswick Autism Society went unanswered by the owners of those facilities. Government officials generally engage in the time honored tactics of delay and divide the autism community and lumber on with the same inadequate resources currently available.

In New Brunswick youths and adults who reside in residential care facilities will be cared for by staff with little or no training in autism or behavior management techniques. When frustrations and conflict arise from strained relations between untrained staff and persons with autism spectrum disorders there is no one to take the side, or offer the perspective of, the autistic youth or adult. Assault charges then follow against the autistic youth or adult who is supposedly being cared for in the residence.

In New Brunswick a year and a half ago an autistic youth was sent to reside on the grounds of the Miramichi Correctional facility. He had been convicted of no crime or offence. He was sent there because the Province of New Brunswick lacked the residential care or facilities in which he could live and receive treatment. Ultimately he was sent out of the province, out of the country, to a facility in the State of Maine.

New Brunswick has a central mental health facility in which persons with a variety of mental illnesses reside. The facility does have a psychologist on staff but the facts of life for an autistic person living in that facility are not pretty. I have visited that facility in the past with a father who told of arriving on short notice and finding his adult autistic son, barely clothed, in an isolation room with a hard wet floor. When we arrived we found exactly the same situation. There is little in the way of recreational programs or activities organized for severely autistic adults.

It might be different in other provinces and states in North America. Living in New Brunswick Canada this is the future that awaits severely autistic children as they age. As the father of an autistic son, now 11 years old, I can not ignore that future. It is the ultimate autism reality check.

April 12, 2007 Posted by | adult residential care, autism disorder, autism reality, autism speaks, autism treatment, New Brunswick, Oprah, the view | 4 Comments

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.

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.

April 9, 2007 Posted by | autism disorder, autism every day, autism reality, behavioral seizure, David Royko, tantrum behavior | Leave a comment

The Autism Acceptance Project – Rejecting Reality

The Autism Acceptance Project is one of the more recent rhetorical adventures of the anti-cure, autism is wonderful, movement also known as neurodiversity. If I sound cynical it is because I am. With a son with classic Autism Disorder who is profoundly autistic I, unlike the TAAP people, can not afford the luxury of wishful thinking. I am not seeking help for my son’s many positive attributes. I am seeking help for his negative attributes, the very serious, even life threatening deficits, which impair his quality of life, and will lead to a life of being cared for by others, just as they do for many other lower functioning, inarticulate autistic persons who are not represented in the Neurodiversity discussion groups. The TAAP folks object to candid description of unpleasant truths.

They react hysterically when parents seeking help for their own autistic children speak the truth. Witness the verbal abuse heaped by them on the parents of the Autism Every Day video. I will not stop speaking the truth while the TAAP and neurodiversity crowd write pseudo-scientific critiques dismissing evidence based standards of treatment for autism and condemning truthful portraits of classic lower functioning Autism Disorder.

If the neurodiversity crowd wants to paint a more positive picture for art galleries and society teas fine. Let them petition the American Psychiatric Association to change the names of higher functioning autism disorders to some other labels so that they do not have to be associated with the lower functioning classic Autism Disorder people like my son. That should ease their acceptance goals considerably. They can feel good about themselves and their friends in the neurodiversity movement. Those of us fighting for real help for our autistic children can do so without the annoying sounds of Autism’s sirens singing in the background.

March 25, 2007 Posted by | autism disorder, autism reality, low functioning autism, neurodiversity, TAAP | 6 Comments