Conor's Hour In Hell - Autism Reality At The Hospital

Much of the media coverage of autism disorders focuses on "autism is beautiful" ideology promoted by some, not all, persons at the high functioning end of the autism spectrum, those with high functioning autism and Aspergers. The alleged Autism Self Advocacy Network led by a very intelligent high functioning young man with Aspergers, who was only diagnosed with that disorder as an adult, has no problem promoting its views on the Canadian public broadcaster CBC and other major media outlets. Rarely are the realities of autism disorders for the severely autistic brought to public attention.

When the day comes that a CBC reporter leaves his or her cushy office confines and travels to a mental health care institution to observe the realities of severely autistic people living their lives in institutional care I will be very, very impressed. But I am not holding my breath waiting. And I am not sure they even know that the severely autistic exist in such circumstances to begin with. It is much easier and appealing for the journalism autism dilettantes to promote the "positively autistic" agenda and ignore brutal autism realities.

Parents of severely autistic children do not share with reporters at CBC, the New Yorker magazine, and other such media the luxury of autism ignorance. For us autism reality is part of daily life as it was yesterday when we visited the hospital with Conor for a pre-operative appointment. The appointment was to ask questions about Conor's health and have a doctor examine him prior to dental surgery later this month. The actual time with the examining doctor was very brief but after checking in at the appointed time, 8 am, we had to wait another hour before the doctor could see Conor. That hour was no pleasant for Conor, for us, or for those who were also waiting.

During the hour long wait Conor grew increasingly frustrated and agitated. His routine was disrupted. Ordinarily he would be heading to school which he loves. The hour wait was difficult for him and he grew very agitated, screaming, biting his hand several times and at times pulling my hair and pinching my face.

I am not complaining about the hospital staff or arrangements. People at the hospital did the best they could. The doctor had been delayed by a meeting that went on longer than expected. When he arrived he did the examination as quickly as possible knowing that Conor was upset. The staff were very helpful and sympathetic. A nurse went and obtained a popsicle for Conor which helped.

Nor am I complaining about Conor's behavior. In the past he has enjoyed "hospital adventures". Yesterday he did not. Yesterday, for one hour, Conor lived in hell. His behavior did not arise from "being bad" or "misbehaving". It arose because he has a serious disorder, Autistic Disorder, with limited ability to deal with circumstances beyond his control. Yesterday, for one hour, his Autistic Disorder hurt him.

That was autism reality yesterday for Conor. I love him dearly. Conor brings me tremendous joy every single day. I refuse to bend to the "autism is beautiful" propaganda spewed by a self centered group of people with little knowledge of the realities faced by my severely autistic son and who share no common reality with him; yet pretend, falsely, to speak on his behalf.

And I despise the lazy, incompetent journalism that promotes the agenda of the fortunate and ignores the reality of the unfortunate ... the severely autistic like my beloved son, Conor.

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Public Autism Tantrums - Parents Scorned and Accused By Those Who Do Not Know

Yesterday I sat with Conor in the family car while his mother and brother briefly popped into a local grocery store. Conor wanted to stay in the car but after a while, and despite being asked again if he wanted to go in the store with Dad, he began screaming ......... very loudly. I was able to get the screaming to stop in fairly short order but not before a lady walking nearby turned and looked back in our direction - twice.

It was a very mild public reaction in the scheme of things and we have been very lucky with Conor but others I know in New Brunswick have not always been so fortunate receiving visits, and investigations, by child welfare social workers. Negative public reactions, and child welfare investigations by those who do not understand the realities of autism are facts of life for many parents and carers for autistic children.

Talking about such negative realities invites sneering and snide commentary from some who promote autism as a "culture" or a joy. These are everyday realities for the parents and carers of many autistic children who find no comfort in the inane works of Gernsbacher, Mottron and Dawson or the unrealistic dramatizations of autism by CNN obsession, and former Simons Rock college for gifted students attendee, Amanda Baggs. Most parents care too much for their autistic children to pretend that their children's autism is anything but what it is ... a neurological disorder that impairs and restricts the lives of their children. The public meltdowns of their children and the societal reaction that often results are endured courageously by these parents ... because they love their children, they care for them ... and they are responsible for doing the best they can to help their children experience and enjoy life to the fullest.

In When child has autism, excursions are challenge the Pittsburgh Tribune-Review offers an informed and helpful portrayal of the challenges faced by families of some autistic children who must deal with their children's public tantrums and the consequences that sometimes result. The Tribune-Review article tells the story of Catherine Hughes whose son Christian improved dramatically after receiving behavioral intervention. Along the way though Ms Hughes endured criticism by a pediatrician who described her son as "hyper" and declared that she did not know how to control him. On the day of an appointment Ms Hughes had obtained for her son with a specialist he suffered a meltdown in a restaurant where an employee accused her of child abuse. Three police cars quickly arrived and Ms Hughes spent four days in jail before spending thousands of dollars in legal fees to get the charges dropped, clear her name and regain custody of her children.

The Tribune-Review feature offers some helpful suggestions for parents seeking to manage their children's public excursions to reduce the likelihood of tantrums and suggestions on how to handle public reaction. Features like this create real autism awareness and help the autistic children and their families who live with the sometimes harsh realities of autism.

autism

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.