Wednesday, March 11, 2009

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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Anonymous said...

My daughter also bites her hand when frustrated and she has periods when she is frustrated several times a day.

I don't knw if you saw ASAN's selfish response to Lindt Chocolate's generosity. It's effort to stop the company from giving to Autism Speaks.

The problem again is the spectrum. The search for a cure may be something completely unneeded for some on the high end of the spectrum, but for low-functioning children it would be a godsend.

Many of the ND high-functioning types are more worried about being personally insulted by pursuit of a cure than they are of condemning low-functioning children to institutions.

This is not to say these institutions are bad in themselves. Indeed the loss of them in many areas is tragic. However, given the choice that my daughter live a life with friends in society or a life in an institution. I want her to have the ability to choose the latter.

There may be valid reasons why this cannot happen for her, but it shouldn't be because some high-functioning person had his pride wounded by the suggestion that a cure for Autism is needed.

farmwifetwo said...

Sorry he had such a terrible time of it. We're lucky our little one can usually adjust to changes with minimal fuss especially if there's a good playroom of toys available.

Hoping your dental surgery goes well. We had our first one a year ago... after nearly a year wait ::eye-roll:: and it went better than I dreamed.... A lot better than some of those NT parents experienced - snickers :)

Part that got me was the "shouldn't we give him the tour" by the social worker. Yes, had it been my elder we would have had to or the anxiety would have been off the charts. Thankfully, he does very well at the dentists.

For the little one... wasn't worth the effort. He's a "do it and get it over with" kid.

Best wishes that surgery day goes well.

Anonymous said...

I am so sorry Conor had a hard time at the hospital.

We had our first dental surgery with our son last weekend - after months and months of dread and worry, and two pre-op appointments. It wasn't an easy day, but our dentist & the hospital staff did everything they could to make it go better for William (and cheerfully accomodated our requests for alternatives to amalgam fillings & nitrous oxide). William wasn't nearly as scared as I thought he might be. He seems to finally be forgetting the many bad hospital experiences he had when little.

I don't think people understand how complicated and stressful it can be to access even basic health care for children with severe autism. I hope Conor's surgery goes smoothly. I really love the pictures you post of him - it's easy to see what a wonderful boy he is, and how much your family cherishes him.

Marni Wachs said...

Waiting in a medical office is quite often "social hell" for a parent. The social norm of a child sitting quietly in a chair is only momentarily possible (for this Mom anyway), even with great effort, constant focus and attention and even using an ABA-style "wait" program.

You often get the quick look of displeasure, the loaded stare of parental judgment, and on a "great" day, you get to hear a judgmental comment. Thank goodness when I had this happen, there were several people who were understanding and offered me some help, and some candy for my son. There are good, understanding people out there too which is immensely helpful.

My point is that there is that added burden of handling the tension created by the constant disconnect of societal norms and expectations, and the reality of autistic behaviours in the waiting room / medical environment, and it adds a tremendous amount of pressure to the original problem, already rife with challenges in it and of itself, of getting medical treatment for your child.

I believe these factors are part of many parent's assessments of whether or not to pursue medical care on a given day, or a given issue. I don't doubt that the bar is much higher for the parent of a child with autism to seek care. It is what it is; it has to be so that this is true. I can say for sure it's true for one family. This seems like something the medical system should be aware of.

shakingsystem said...

Anxiety is a byproduct of resisitance to change and dealing with transitions.

Transitions to new environments may be made easier by visiting the new location (hospital) to establish familiarity with the physical space,routine,personnel and environment.

When permanent transitions to a new environment(hospital) have been made,allow time for Conor to adjust to the sights, sounds and smells of the hospital and then gradually increase demands.

What may help is a portable visual schedule for Conor to refer to in order to reassure himself of when transitions and events will occur.

I hope these tips may help relieve Conor's anxiety while staying at the hospital.

Good Luck!

Claire said...

Marni, the medical system is unaware of anything related to discomfort when it comes to disabled kids (or adults for that matter). When we used to visit the neuro clinic, wait times were ALWAYS three hours later than scheduled appointment. Try keeping a child in a wheelchair with minimal function and no place to lay down or change her happy for that long...then drive home for another hour after that. We stopped going. It's just awful...I can't imagine what it would be like for an autistic child.

Marni Wachs said...


Yes, disabilities of many types offer challenges in having to always bend to the expectations of the medical system, and I sympathize with your situation too.


This doesn't solve the problem, but here's a thought I've had which makes me chuckle a bit.

If my son is acting inappropriately in the waiting room like screaming, squealing, touching other people, etc. I make sure that I have TOLD THE RECEPTIONIST that he has autism and there's only so much I can do, and that it would be to EVERYONE'S BENEFIT for him to be seen quickly. I think this may not necessarily work that time, but you betcha s/he'll remember for the next time!!!

I plant today, I reap tomorrow.