Premier McGuinty: Lloyd Denner, Jr., blind & autistic, needs your help!

St. Catharines Standard

This post is about Lloyd Denner, Jr., a Niagara area young man who has both autism and is blind. When I read this St. Catharines Standard article about his family’s plight, I remembered what I wrote before on the topic of the closure of the Thistletown Regional Centre which had residential beds and meaningful programs for young adults like Lloyd.

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Rigidity & lack of empathy why some high-functioning autistics deny reality

It is long past time that I publicly questioned the rigid and incomplete assumptions held by some high-functioning self-described autistics who have Aspergers (like Michelle Dawson and Ari Ne’eman), and their supporters. For example, I read an article last week that supported the view that autism was changing the world for everyone.

Suggesting to me that, no matter how informal, there is a type of marketing or re-branding campaign going on. For example, the article’s author, George Dvorsky, stated:

“Even if some people still see autism as a condition that needs to be ‘treated,’ it’s increasingly obvious that people on the autism spectrum are finding ways to succeed in our neurotypical-based society. Not only that, but autistic people are changing the nature of our society as well — in many ways, for the better.”

Changing the world for everyone? For the better? Our neurotypical-based society?

Without a doubt, the article is an example of political correctness taken to the extreme. As a society we do not have “neuro-typicals.” As a learning specialist I can say, unequivocally, that we have only people who are normal within a wide range of learning styles. No two people think or learn alike. Meaning, in fact, that just as no two individuals with autism think alike, there are no normal “typicals” either.

Do I empathize with those who have Asperger’s? Absolutely. I worked with people with learning disabilities for over a decade through my private practice. They simply don’t want to be labelled as disabled and they want to be treated as everyone else is treated. However, the reality is they are not the same as everyone else.

Specifically, psychiatrists and psychologists are able to diagnose when someone has aspects of a spectrum of disorders we call autism. They know because the criteria for such a diagnosis has been in the Diagnostic Statistical Manual of Mental Disorders (DSM)  for a couple of decades now. 

Read, for example, the pending revisions to the DSM-5. There is nothing positive written there.  There is nothing that can change our society for the better, other than an understanding of the disorder. In fact, just looking at two criteria would indicate such negative aspects as: (1) stereotypical rigid thinking through repetitive patterns of behaviour and speech, and (2) deficits in social-emotional reciprocity.

And, therein lies the problem. People with autism, even if they are highly intelligent and articulate, can be rigid in their thinking and that reality is made worse by an inability to empathize with others whose autism is more severe.

Need proof? Then read this recent post by Harold Doherty which is extremely important because it indicates that some well-meaning individuals, like Dawson, are actively campaigning “against” ABA treatments that will help children compensate or accommodate their autism. Why? Because, in Dawson’s view, the theoretical foundations of ABA are unethical.

Of course, it is a free country with free speech and Dawson can have whatever opinion she wants. However, she doesn’t seem to understand that sometimes we have to do negative things in order for there to be positive outcomes. Chemotherapy is one such example.  Having physicians put poisons into our bodies would seem counter productive. However, it can mean a renewed and longer life to those who persevere.  

So, the crux of the matter is that aspects of autism disorders (such as Asperger’s) attributed to individuals who are highly intelligent and highly articulate, make it very difficult, if not impossible, for those individuals to truly understand the needs of those who have been diagnosed with far more severe forms of the disorder.

Why deny worst symptoms of autism?

This picture reminds me of my son. Click for source.

I am sick and tired of high functioning autistics and their supporters in the field and media trying to make autism the new norm.  Over and over we now hear and read: autistics have unique abilities, autistics are creative thinkers, autistics are gifted and autistics have special talents.

For example, today we even read that autistics have something in common with genius and that child prodigies owe their talents to autism.  I mean, estimates are that savants make up only 10% of those having the disorder, yet somehow that is being pushed as the norm for those with autism.

Yes, there are some high functioning autistics. Those of us who have family members affected by autism are only too familiar with their names.  But, sorry, no matter how intelligent or verbally articulate a person is, not being able to read body language or empathize with others are not positive characteristics or indications of special talents. Nor are such symptoms, in no particular order, as:

  • avoiding eye contact when talking with someone;
  • not wanting to be touched;
  • being extremely sensitive to sound;
  • displaying outbursts of temper when something unexpected happens;
  • showing an inability to socialize and make friends;
  • repeating words and phrases; and/or
  • displaying obsessive compulsive or self-injurious actions. 

Meaning, if those who are claiming to be a high functioning autistic do not have at least some of those symptoms, then sorry, they are simply not autistic; eccentric and creative perhaps but definitely not autistic. For the full list of signs and symptoms, scroll half way down the page of this link because that is the reality of autism.

Readers will note, however, I did not include developmental delays and that was deliberate because we already know the DSM-5 revision team is going to be removing intellectual disability from the diagnostic criteria for autism. Yet, removing it from the autism spectrum category is not going to change the reality that if someone has all the autism symptoms AND an intellectual disability, they still have autism.  

Anyway, this current attempt to rebrand autism is especially poignant today. It is my son’s 47th birthday, a day I can’t help remember.  His was a very difficult birth that should have been a C-section. I ended up with over a hundred stitches and was anesthetized when he entered the world. So, some hours later after I got out of the recovery room, the nurses brought him to me.

I was excited and snuggled with him as most new mothers do. He was my second child and now I had both a daughter and a son. Yet, I still remember the shock I felt when he stiffened his entire body in my arms and screamed at the top of his lungs. The nurses and I made a joke that he had a good pair of lungs. Then, I recall trying to give him my breast but he was having no part of it as he stiffened again and refused to eat.

Eventually, my milk dried up because he was not eating and we had to resort to the bottle. However, once I got him home from the hospital, it became very evident that he could not suck and that he was constantly hungry. If I had known then what I know now after my studies in psychology, I would have realized he either had a brain injury from the difficult birth or autism because the effect was the same. 

By the time he was six weeks old, I was feeding him rice cereal mixed with soy milk using a little spoon because he simply could not get enough to eat from a bottle.  I particularly remember kneeling on the floor beside his crib for ten hours one night with my arm through the bars repeatedly putting the soother back in his mouth. By morning, he kept it in for up to five minutes and I was overjoyed because it not only proved to me he could learn but that he would now have some comfort from crying.

Remember, this was the mid 1960’s and refrigerator mothers were blamed for any kind of disability. Today’s parents have no idea how awful that was. To desperately want help for your child, knowing he is different and receiving only blame. Needless to say, it broke up my first marriage. Other details about my son’s story I shared on a World Autism Day entry.

Anyway, my point is that while few autistics are prodigies or geniuses, they are all loved and appreciated in their own way. And yes, some go on to do some interesting and amazing things as I highlight on my “Autism Stories Archive Header Page.” However, to suggest that being autistic is somehow special is to ignore and minimize the struggles of those who have intellectual disabilities, are non-verbal or struggle with moderate to severe autism symptoms of a behavioural nature. 

To put it bluntly, for most autistics and their families, who deal day to day with struggles related to the disorder, it is a lifelong disability and most definitely not a gift.

Update: Here is an interesting article that is right on topic — The Real Faces of Autism — from the Manhattan Times.

Few with autism are gifted, so why campaign to deny worst symptoms?

This picture reminds me of my son. Click for source.

I am sick and tired of high functioning autistics and their supporters in the field and media trying to make autism the new norm.  Over and over we now hear and read: autistics have unique abilities, autistics are creative thinkers, autistics are gifted and autistics have special talents.

For example, today we even read that autistics have something in common with genius and that child prodigies owe their talents to autism.  I mean, estimates are that savants make up only 10% of those having the disorder, yet somehow that is being pushed as the norm for those with autism.

Yes, there are some high functioning autistics. Those of us who have family members affected by autism are only too familiar with their names.  But, sorry, no matter how intelligent or verbally articulate a person is, not being able to read body language or empathize with others are not positive characteristics or indications of special talents. Nor are such symptoms, in no particular order, as:

  • avoiding eye contact when talking with someone;
  • not wanting to be touched;
  • being extremely sensitive to sound;
  • displaying outbursts of temper when something unexpected happens;
  • showing an inability to socialize and make friends;
  • repeating words and phrases; and/or
  • displaying obsessive compulsive or self-injurious actions. 

Meaning, if those who are claiming to be a high functioning autistic do not have at least some of those symptoms, then sorry, they are simply not autistic; eccentric and creative perhaps but definitely not autistic. For the full list of signs and symptoms, scroll half way down the page of this link because that is the reality of autism.

Readers will note, however, I did not include developmental delays and that was deliberate because we already know the DSM-5 revision team is going to be removing intellectual disability from the diagnostic criteria for autism. Yet, removing it from the autism spectrum category is not going to change the reality that if someone has all the autism symptoms AND an intellectual disability, they still have autism.  

Anyway, this current attempt to rebrand autism is especially poignant today. It is my son’s 47th birthday, a day I can’t help remember.  His was a very difficult birth that should have been a C-section. I ended up with over a hundred stitches and was anesthetized when he entered the world. So, some hours later after I got out of the recovery room, the nurses brought him to me.

I was excited and snuggled with him as most new mothers do. He was my second child and now I had both a daughter and a son. Yet, I still remember the shock I felt when he stiffened his entire body in my arms and screamed at the top of his lungs. The nurses and I made a joke that he had a good pair of lungs. Then, I recall trying to give him my breast but he was having no part of it as he stiffened again and refused to eat.

Eventually, my milk dried up because he was not eating and we had to resort to the bottle. However, once I got him home from the hospital, it became very evident that he could not suck and that he was constantly hungry. If I had known then what I know now after my studies in psychology, I would have realized he either had a brain injury from the difficult birth or autism because the effect was the same. 

By the time he was six weeks old, I was feeding him rice cereal mixed with soy milk using a little spoon because he simply could not get enough to eat from a bottle.  I particularly remember kneeling on the floor beside his crib for ten hours one night with my arm through the bars repeatedly putting the soother back in his mouth. By morning, he kept it in for up to five minutes and I was overjoyed because it not only proved to me he could learn but that he would now have some comfort from crying.

Remember, this was the mid 1960’s and refrigerator mothers were blamed for any kind of disability. Today’s parents have no idea how awful that was. To desperately want help for your child, knowing he is different and receiving only blame. Needless to say, it broke up my first marriage. Other details about my son’s story I shared on a World Autism Day entry.

Anyway, my point is that while few autistics are prodigies or geniuses, they are all loved and appreciated in their own way. And yes, some go on to do some interesting and amazing things as I highlight on my “Autism Stories Archive Header Page.” However, to suggest that being autistic is somehow special is to ignore and minimize the struggles of those who have intellectual disabilities, are non-verbal or struggle with moderate to severe autism symptoms of a behavioural nature. 

To put it bluntly, for most autistics and their families, who deal day to day with struggles related to the disorder, it is a lifelong disability and most definitely not a gift.

Update: Here is an interesting article that is right on topic — The Real Faces of Autism — from the Manhattan Times.

Some parents have unrealistic expectations for autism funding

Yesterday I read that Nova Scotia’s NDP government was going to double funding for pre-school children diagnosed with a moderate to severe autism spectrum disorder — from $4 million to $8 million a year.  In my opinion, that is a good investment because research has proven that the earlier you get children into an ABA or alternative program, the more likely their social interaction and verbalization will improve. (See also the report on the Stanislaus Study.)

So, what was the reaction among parents who have children with the kind of autism that would benefit from such funding? As the Globe and Mail’s Corbett Hancey reports (my italics):

“Jenn Fancy de Mena, President of the Annapolis Valley Autism Support Team in Nova Scotia thinks the funding is a step in the right direction, but worries the decision ignores older children with autism. ‘I presume they’re operating from the belief that the younger the children get therapy the better it is,’ she said. ‘Unfortunately that leaves out a whole group of kids. My son gets no money and no treatment right now.’

Ms. Lanthier of Autism Speaks acknowledges that despite new funding announcements parents of children with autism will still be going into debt to pay for treatment. She said that even funding in British Columbia, where the government provides $22,000 per autistic child per year, is not enough. ‘If you’re talking about a really multi-disciplinary, comprehensive treatment plan that includes behavior modification, speech and language therapy, occupational therapy…you could be talking $60,000-$80,000 per year.'”

 A step in the right direction? From $60,000 to $80,000 per year per child? What on earth has happened to our society when parents expect taxpayers to provide that kind of money for each and every child diagnosed with an autism spectrum disorder? Of course they will go into debt. That is a given. Because, remember, government’s can be all things to all people. They have to prioritize and take care of all children with special needs. 

For example, what about the parents who have children with juvenile diabetes, Cerebral Palsy, Muscular Dystrophy, Attention deficit Disorder and intellectual disabilities, such as Downs Syndrome? I mean, there is only so much money in any one province’s health care and social services pots, and that money needs to be shared.  In other words, it’s not all about childhood autism treatment or it shouldn’t be because there is a whole lifetime to consider!  

My son was born 45 years ago. I knew something was wrong with him in the hospital because he couldn’t suck. Then, as as soon as he could stand, the hand flapping and hand biting started.  Yet, in spite of all the subsequent problems before and after he started school,  it wasn’t until he was fourteen years old that we were able to get him admitted to an Ontario residential treatment centre where he received behavior modification over a two-year period.

Prior to that time, as with all parents, we had to pay for whatever help we could find ourselves. We both worked. We did without. We remortgaged our home many times, which was made possible simply because real estate prices continued to rise through the 70s and 80s.

So, yes, I acknowledge the importance of government funding. But, I also know, from personal experience, that scarce resources must be spent in the most effective way possible. And if that is at the pre-school level, then that is where it should go. Because, there is going to come a time — at the other end of childhood and youth — where funding of a different nature will also be required, either for supports to live at home, supervised independent living in an apartment (which is the kind of funding support my son and daughter-in-law receive at the moment) or in a specialized group home.

So, while individuals with mild autism or Aspergers can live their lives like everyone else, those with moderate to severe autism usually cannot. It’s also about the types of long-term support individuals and their families are going to need. If provincial governments started allocating $80,000 a year towards treatment for one child, say from age three to age ten, there will be nothing left when they are twenty-three and they and their families need other equally important interventions. 

Something to think about.

Endnote: I would like to point out that there are many people with mild autism that don’t feel they need any kind of health care supports, ABA or otherwise. In fact, some individuals with Asperger’s, for example, are very high functioning and extremely creative individuals. The reality is, of course, that none of us are “normal” in that none of us are “perfect.”  We all think differently. We all use different learning strategies. Some of us like using maps. Some of us like using point form lists. Some of us wear glasses, some not. So, when I refer to an autism spectrum disorder or special need, I am talking about children and adults who are like my son, unable to work in a competitive job and require constant supervision in the context of daily living, particularly with money management. Fortunately for us, our son is now quite verbal and social. But, there are also children and adults who are not only non-verbal, but have severe intellectual disabilities combined with autism-related behavioural problems. They, unfortunately, will always require 24 hour supervision — which is why I make the point that government funding needs to be shared and allocated throughout the entire life spectrum.

Genetic findings about autism factors are huge!

When I received my University of Toronto alumni newsletter this morning, I was very pleased to read a news release about the latest findings of the International Autism Genome Project, Phase 2. Although the report of the study itself can be found in a June 9th advance edition of Nature, the key points for professionals and parents from the release are:

The study substantiates the importance of genes as susceptibility factors in autism spectrum disorders. Meaning that if a child’s behaviours falls within the autism spectrum, identifying those factors could pave the way for a definitive diagnosis, which in turn should lead to treatment options.   

Some of the susceptibility genes — called “copy number variants” (CNVs) appeared to be inherited while others are considered new. The result? Dozens of new autism risk genes have been discovered, including “some that might be helpful in early diagnosis.” As Stephen Scherer (Director of the McLaughlin Centre at the University of Toronto) is quoted as saying: “We now know several of the genes involved in autism and for the first time, we are able to tie many of these genes into the same biological pathways involved in brain function….Knowing these autism genes are linked, we can begin to develop therapies to target the common pathways involved.”

Another discovery made during this phase of the project was the overlap between autism susceptibility genes and those genes that were previously thought to be implicated in intellectual disability. As such, I can’t help wonder how the developers of the next DSM-V will deal with this new information.

In 10% of the families studied (1500 in all and more than 120 scientists) they found that there were some genetic “clues” that may “assist in the early diagnosis of autism or related complications.”

So, the results of this study will, no doubt, result in a paradigm shift when “it comes to our understanding of the root causes of autism and indeed other neurodevelopmental disorders.” In fact, the Canadian researchers involved in this project say the next goal “is to set up mechanisms and processes so that all families who are interested can have access” to the same testing as the 1500 families involved in the study.

Think about that. Parents being able to take their children for DNA testing, just like any other blood test. Then, if no genetic cues or CNV’s suggesting autism or intellectual disability are found, then genetic causes can be ruled out. Meaning, that the medical profession will have no choice but to look for other possible causes, including environmental toxins and possible negative reactions to vaccines.

The crux of the matter is that, even though this study’s findings have been quietly released, its findings are huge because they are about to change the way autism spectrum disorders are currently diagnosed. Here, for example, is what Harold Doherty at Facing Autism in NB wrote on that topic in relation to these latest findings.

Wakefield decision & autism battles continue

The broader autism community (parents, educators and other professionals) and political autism activists are at war. As a result, in seems that many of them, particularly the latter, have totally forgotten about the children and adults with moderate to severe autism who need their help and guidance.

(1) The Neurodiversity Vs Disability Battle

The first battle in the war relates to autism diagnosis and what has euphemistically been called the “neurodiversity” versus disability battle. Essentially, what has been happening is that, for the politically correct reason of including stakeholders in political decision making,  people with mild or borderline autism (Aspergers) are making decisions that affect those with moderate to severe symptoms. 

For example, many high functioning autistics have given presentations to parliamentary and congressional committees, to court  justices, to politicians and to television audiences. They have also been appointed to important councils (e.g., President Obama recently appointed Ari Ne’eman to an administrative post on the U.S. Council on Disabilities) with major implications for the future of autism treatment. 

Some, like Ne’eman, are not only anti-research and anti-disability but even anti-treatment and anti-cure (unlike other groups who desperately want more research and treatment options), meaning they are being asked to judge the needs of others on the basis of their own reality.

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