an area on which I will comment on the various news articles, recently published research and thoughts I have been dwelling on..... that don't fit in any of the other sections of this website. I guess we could call it a blog of sorts.

Insights of the day......

January 29th, 2014 - A Tribute to Avonte Oquendo

 

It has been 4 days since Avonte's funeral, four days since his family gathered privately to mourn his passing. It has been almost 4 months since the search for Avonte began, shortly after he ran through an open door at his school, a search that caught the attention of all of us in the autism community. We watched the news, hoping to hear he had been found. We prayed. We waited. We hoped. As the days, weeks and months passed by we continued to hope that he was safe, somewhere. We shared our concerns on facebook with our words, photos, poems, and other offerings of support to his family and friends. We held candlelight vigils across the world together, all to no avail. When the word came that a body had been found along the East river, we all hoped it wasn't him, but it was. The time had come to say a final good-bye. Rest in peace, Avonte.

 

Throughout the years I have worked as a professional in this field, I have come across many stories of runners - individuals on the spectrum who are using flight as their means of lowering the stress in their reservoir of anxiety....stress that is usually either due to high levels of sensory input from the environment, frustration with the lack of understanding and acceptance of those they have to deal with or boredom. I immediately assumed that it was something like this that was going on with Avonte. I believed that whatever was happening for him at his school was too much for him and his escape through the open door was his way of lowering his stress level. I had faith, in the beginning, that he would be found because I realize that the main focus of those on the spectrum is survival and that they are able to survive in ways and places that many of us can't imagine. I can share many stories of survival of this type with you. But as the days flew by and he wasn't found, I did begin to wonder if something else might be going on. I hoped he was with someone who was not allowing him to leave. I wasn't willing to give up on him.

 

When his body was found I had to admit that everything I was thinking was likely wrong. At this point, I have no idea at all of what happened to Avonte. I don't know why he ran. I don't know where he was and what he was dealing with. I don't know how he died. But I have begun to wonder about a different scenario than the majority of people are looking at. This is because of a video that I share during my workshops, a video I have watched many time this past month. A video I share here with you today......

 

      

I am not saying that Avonte was in the same spot as Peyton was when she was a teen "plotting her death". I am not saying that Avonte fled the school on October 4 last fall in order to commit suicide. I have no idea if this is what happened. But I think we all need to be fully aware that it is a possibility. I think we have to admit that those on the autism spectrum are as capable of this as anyone else is.

 

In the midst of our demands that we find ways to keep those on the spectrum safe and ways to locate those on the run, easily, we must also pay attention to the reality that we have to ensure that our young people are truly understood and accepted so that they do not reach the point that Peyton did as a teen. Thankfully, none of her plans were ever brought to fruition. Let us make sure that the decisions we make for all of our children and our teens are those that ensure they live and never have a reason to fear life and seek death.

April 25, 2014  And another one bites the dust.....

 

Prince Rupert mom left suicide note saying she could no longer care for severely autistic son

 

By Sam Cooper, The Province, April 24, 2014

 

Robert Robinson and his mother Angie felt peace walking by the ocean on the Butze Rapids trail in Prince Rupert.For the big 16-year-old — so severely autistic that he could not speak — the rainforest trail had become the only place he could be calm. At home and at school he expressed his frustration — his distance from the world — by head-butting walls, head-butting people, pushing and punching his shy, loving, 100-pound single mother. And so Angie Robinson and her sister Michelle Watson took Robert to the five-kilometre trail every day.

 

On April 2 — when Angie Robinson told her sister she was too tired to make the hike because Robert had been acting up all night — something seemed wrong.“The Butze trail was the only place where Robert and Angie could find freedom,” relative Ron Watson said in an interview. “Angie loved him more than anything on Earth. The shock for us was that she took his life.”

 

After the mother and son were found dead in their Prince Rupert home on April 3, RCMP in Prince Rupert confirmed to relatives that Angie Robinson killed her son and then took her own life. Her suicide note, together with her last post on Facebook, show that she believed she could no longer manage Robert, her family says, and that Family Services could not provide adequate support.

 

Ron Watson said the family wants to share the events leading up to the tragedy, hoping to increase support for autistic children in northern B.C. He said Robert didn’t know his own strength, and his mother was finding it increasingly difficult to take him outside. Watson, who is 5-foot-11 and weighs 240 pounds, said Robert was taller and outweighed him by about 30 pounds. In early March, while riding with Angie in her pickup truck, Robert smashed his head through the rear window. He got worse in the following weeks. After another episode his mother took him to a hospital, where he was fed a steady stream of Ativan pills for two hours until he was sedated, the family said. She and Robert were released, taking home about a month’s supply of Ativan — several hundred pills, according to the family.

 

Robinson told her family she realized after the incident at the hospital that “she had lost Robert” and couldn’t care for him anymore.Ron Watson said he and Angie Robinson went together to a Family Services office in late March, pleading for help. Robinson spoke with a social worker and asked for a long-term placement for Robert. According to the family, on or around April 2, she was informed a residential placement for Robert wasn’t possible.

 

At 11:56 a.m. on April 2, Angie Robinson wrote a last Facebook post: “More, more, more needs to be done for our teens with special needs, they are neglected ... Canada needs more residential and respite care for families hoping to keep their children at home.”Michelle Watson called her sister at 3:30 p.m. that afternoon, and was told to call back the next day.

 

On April 3 Angie Robinson didn’t answer calls and texts. At 5 p.m. the Watsons went to the Robinson home. Ron pounded on the door for 20 minutes, with no response. They called police, and braced themselves for the worst.“The officers broke down the door and then came out, and told us not to come inside,” Ron Watson said. “They told us that Robert was found resting peacefully in his bed.”The family believes Angie Robinson fed Robert a lethal dose of Ativan.“

 

We are not blaming anyone, but we are looking for more autism services in the North so that other families don’t have to go through this,” Ron Watson said. “This is devastating.”Karen Johnston, spokeswoman for the Ministry of Children and Family Development, said the ministry cannot comment on the case for privacy reasons. The ministry provides $6,000 per year for families to assist with “out-of-school intervention services” for autistic children aged six to 18.Inclusion B.C. executive director Faith Bodnar said the ministry significantly reduced funds available to families with autistic children several years ago, and in isolated communities “accesses to resources can be much more limited.”“I think, unfortunately, this tragic event speaks for itself,” Bodnar said.“People don’t do these things if they are well supported. This family was alone, marginalized and not taken care of by the MCFD.”

My heart is heavy. Another mother has been pushed to the point to committing suicide, taking her child with her. Another mother, surrounded by professionals who are quite willing to earn their livelihood not knowing what they are doing, with a complete lack of understanding of the people they are working with and a total lack of interest in educating themselves or taking any responsibility at all for the damage that they do. And so I grieve, and in the midst of my grief and frustration I get sarcastic, hence the title of this piece. Does any of this matter at all to anyone? This morning I think not, in the midst of hoping, yes hoping, that this story may be the wake-up call that we need to bring the changes that those on the autism spectrum and their families  deserve.

 

The following is Angie and Robert's story as found in their local newspaper. I have copied and pasted it here because, although I love the ability to link on the internet, I find that so many of the sources disapear over time.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The uncle states that "they are not blaming anyone". This HAS to stop. We have to start insisting that the professinals who are making decisions for people on the autism spectrum are accountable for what they do. Robert was clearly indicating that he was expereincing a high level of pain by his behaviour: "I hit my head to let the pain out." was a lesson I learned from a young man many years ago, a young man who is also now dead, due to a lack of medical intervention based directly on professionals who refused to give him medical treatment because of his autism. Feeding Robert handfuls of ativan may well have drugged him to the point that he couldn't feel the pain in the moment. I don't know if it did, but I am certain that the ativan did nothing to relieve the actual cause of the pain. We will never know what that was at this point, but we did have the chance if we had given his mother options that would have actually proved useful to her. The SCIO could have supplied us with that answer.

 

This story is NOT about services. This story is about professionals who do not know what they are doing and are not forced to take responsbility for their lack of knowledge. This story is about a human race that is so centered on scientific studies and peer reviewed literature, all based on viewing autism from the outside, that they totally miss what is actually going on in the lives of actual people. I have known that head banging/butting, is a symptom of pain since 1990. When are the professionals going to catch up with me? Or do they ever really want to? Until we make them start taking responsbility for what they do, they really don't have to. It's a sad, sad world.

 

November 16, 2014 - Choosing a Definition

Yesterday an article appeared in one of the autism groups that I have somehow found myself added to on facebook. This article can be found at www.thedailybeast.com/articles/2014/10/yes-aspergery-is-a-slur-and-it-is-time-to-stop-using-it.html  The focus of the article is the use the term "Aspergery" to describe a person. The author claims that a Jeffrey Goldberg wrote a collumn in The Atlantic in which he made a list of the terms that the administration in Washington supposedly has used to insult the Israeli Prime Minister. One of these terms was "Aspergery" - which is a form of the word Asperger's a term used for diagnosing some people on the autism spectrum, based directly on the number of criteria the individual is demonstrating. This term orginated in 1943 when Dr. Hans Asperger publsihed one of the first papers on autism, and named the condition he recognized after himself. However, this term was replaced with autism over the years. The term resurfaced in the late 1980's as professionals began to look at autism as a spectrum, not one single syndrome. It appeared the DSM-1V as an actual diagnosis, and I believe has been dropped from the dignostic criteria in the DSM-V (heard via facebook but haven't paid a lot of attenion to it so I might be wrong).

 

The article claims that the use of the term Aspergery is hghly offensive to anyone on the autism spectrum and that it is used in the same way today as the term gay was in the past to marginalize a certain group of people. Much of the article is based on an interview with a man with Asperger's, Ari Ne'eman, president of the Autistic Self Advocacy Network. He claims that the use of this term "reflects a broader lack of acknowledgement that autistic people are hurt when the way our brain works is used as a political insult."

 

I felt extremey uncomfortable reading this article - not because the term was used, but because of the reaction of the self-advocate. I have spent hours and hours and hours with people with Asperger's over the last 26 years and count many of them to be very good friends of mine. In doing so, I have discovered that the way their "brain works" is not something one needs to be ashamed of. In fact, I find the opposite to be true and fully believe that if our political system were taken over by those on the autism spectrum, our whole world would change for the better. It is true that people with Asperger's may have difficulty in social situations which may make others uncomfortable, but is that such a bad thing in the political arena? Personally i would prefer to deal with politicians who are intelligent, logical, focused, blunt, observant, honest and capable of seeing the whole picture, not just bits and pieces, than those who excel at playing the social game and selling out the interests of the people to line their own pockets.

 

Yesterday I wrote about taking responsibility for your own feelings. If a person hears a word and defines it as an insult - is not that person responsibile for how they are reacting, and in this case, defining the word, which is what is leading to their reaction? If we want to really change the way that people  look at, or talk about those on the autism spectrum, do we do so by seeing our diagnosis as an insult? Would it not be better to celebrate the fact that people are recognizing the traits of autism/Asperger's in a politican? Would it not be better for a self-advocate to be pointing out those positive traits to the reporter?

 

I live in a world where I am constatly beseiged by the need for autism understanding, autism awareness, and autistm acceptance. None of this is very difficult to achieve on a personal level if one wants to make the effort to do so. As a person who as made the effort to clearly understand autism and to share unconditional acceptance to those who are on the spectrum, I find the response of Ari to be frustrating and defeating. I celebrate all of the traits of autism. If someone tried to insult me with the term Aspergery - I would take it as a compliment because I know it means good things, not bad. However, I don't think we will ever get anywhere if we use diagnosis to wallow in the "woe is me, I have been insulted" viewpoint. I don't think anyone, who doesn't know anything about autism is going to be open to awareness and understanding when people with the diagnosis see it as an insult. It only strengthens that message

 

As for me - you can call me Aspergery all you want. I will take it as a compliment and deep within say "I wish!"

50 Million Cases:

Research via the Internet

The first words of the article[1] grab your attention. “If you were born in the early 1950’s you were born into a world where approximately 50 million people suffered from smallpox.” Imagine that! 50 million people with smallpox in a world of only 2.5 billion! That was something you would think we would have been paying major attention to. After all, only 25 million died in the Black Plague in the 1300’s which is remembered as one of the greatest epidemics of all time. You would think that 50 million cases of smallpox would have brought worldwide attention. But it didn’t. I was there in the fifties and we were NOT talking about smallpox. We were obediently lining up and getting our vaccinations, ones would we would wear on our upper arms for the rest of our lives. This is not to say we were not concerned about disease. We were very concerned! But it wasn’t smallpox. It was polio.

 

The article goes on to praise the achievements of the vaccination process over time, admitting at great length that “can be difficult to separate fact from fiction”. I assume the reporter is confident that she has done so as she continues on to state the facts that she has obviously gathered from the internet, considering that the sources that she lists at the end of her article all begin with www. Therein lies the problem with much of what we read these days.

 

50 million cases! It was that figure that sparked my curiosity. Could I really have lived in a world where there were fifty million cases of smallpox and not known it? Obviously these cases were not found in the community I lived in, or the province, or the country for that matter. But we live in a huge world and there were many places that did not have the standards that I was experiencing in my home. I decided to go to the internet and find out for myself.

 

50 million cases…..there it was, coming up over and over again, from one site after another:

http://en.wikipedia.org/wiki/Smallpox , http://www2.cdc.gov/nip/isd/spoxclincian/contents/references/factsheet.pdf , http://www.who.int/about/bugs_drugs_smoke_chapter_1_smallpox.pdf , http://www.museumofhealthcare.ca/explore/exhibits/vaccinations/smallpox.html   

 

Be aware that these weren’t the only sites I checked out and read these statements, but are an example to demonstrate how pervasive this information is. Note that the websites are those we should be able to trust – Wikipedia, the CDC, WHO, and the Canadian government, who were responsible for creating the museum of health care. 

 

Investigate further and you find variety of claims that even exceed these numbers. For example the site at http://www.cgdev.org/doc/millions/MS_case_1.pdf claims that up until 1966, there were 10 million to 15 million cases a year and the CNN makes claims on a fast facts sheet on small pox http://www.cnn.com/2013/09/02/health/smallpox-fast-facts/  that there were 15 million cases per year, which works out to 150 million within the decade. This indicates that there is currently a widespread belief that smallpox was a major concern that ravaged humanity in that decade.

 

But was it?  Or are we being misled to create a false sense of security in a process that we have all been led to depend on. Let’s look at actual statistics from that decade.  Since I was confident that the cases of small pox were not reported from Canada or the United States, I started my search by looking for 3rd world figures. I added Africa to my search and found an article I which can be read at  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2668906/ : Smallpox in Africa During Colonial Rule[2] by William H. Schneider. Schneider uses statistics reported through the WHO Chronicle, the official newsletter of the World Health Organization to demonstrate, not only what was happening in the Africa at that time, but also that which was happening in the whole world. Surprisingly, these statistics match far more closely what I remember from living through decade, than the 50 million cases that are being reported on the internet, not only by the media outlets and governments of the world, but by WHO itself.

 

The following graphs demonstrate the number of cases reported in various African countries. As you can see we are a long, long way from 50 million cases, no matter how you choose to manipulate these numbers.

 

Graph # 1

Small pox cases and vaccinations, Sierra Leone

1931 - 1958.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Graph #2

Small pox cases and vaccinations: Uganda,

1931 -1958

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Graph #2

Small pox cases and vaccinations: Kenya,

1930 -1960.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Obviously the 50 million cases that are being reported were not found in Africa. Where else could they have been? As we look at a chart for the last three years that is also included in this article, it becomes even more puzzling.

 

Table 1

Smallpox cases reported by continent, 1959–1961

Continent     1959     1960      1961

Africa           15,781     16,127       24,182

America         4,899       5,531        8,168

Asia              60,749    39,251       52,217

Europe             15            47             27

 

Source: ‘Development of the smallpox eradication programme’, WHO Chronicle, 1967, 21 (9): 389—93, on p. 389.

 

Of course, this table only represents 3 years of this decade, but even if we multiply these numbers by 3 or 4, we don’t get any closer to 50 million than we were before. If you closely at the graphs pictured above, this claim even makes less sense as the majority of the reported outbreaks of small pox in each of the African countries summarized, come at the end of this decade which would make the multiplying of these figures by 3 even more meaningless. The only logical response to this table is to assume that the smallpox cases were mainly found in Australia and on the islands of the world as they are not included on in the continents we are shown.

 

A true investigator is not satisifed with one source. The second article I came across was found at http://whqlibdoc.who.int/smallpox/9241561106_chp8.pdf . This is Chapter 8 of a book which does not come with a title or an author, from the library documents of the World Health Organization. The chapter is called The Incidence and Control of Smallpox Between 1900 and 1958. Since I do not prefer to reference material I cannot trace to the source, I hesitate to include this work, but since it comes through the World Health Organization, I feel it is important to stress that they have this material in their library. The author of this chapter goes through the history of smallpox throughout the world, one continent after another and includes reports from Australia and New Zealand and the islands of the world. If you take the time to add up all the cases reported from the 1905’s in this chapter you do not get anywhere close to 50 million.

 

The next logical step for me as an investigator is to check out the library of the World Health Organization of the United Nations as they appear to be who is in charge of recording and keeping the statistics on disease in our world. They are the group who are being referenced as the originators of the number 50 million on other websites. And what’s more, they were the publishers of the Chronicle in which the graphs I posted are located. As a researcher I always prefer to find the original source of anything I quote. So off to the WHO library I go…..where, there is a definite lack of Chronicles. Yes, a Chronicle from 1947- 48 is there, but that’s the only one. Obviously they kept publishing them up until at least 1967, based on the fact it is used as a reference in the research done by William Schneider, but for some reason they are not sharing them with us in their library. Is this an oversight on their part, or perhaps a cover-up? MAybe they just haven't got to putting the rest on the internet yet.  I don’t know. However, I do believe that it makes their claim of 50 million cases of small pox in the 1950’s very questionable and I wonder why our world governments and media are so willing to quote these figures.

 

Does it show us clearly how poorly research is being carried out these days by the people we trust? I believe so.  Does it demonstrate a goal of something more sinister? Perhaps. If nothing else, it is clearly an example of why one should be very careful of believing anything that they read, based only on internet research, and even more so quoting such research as a basis for their arguments. A good reporter needs to take responsibility for the stories that they write. Is this happening anywhere in 2015? 


Footnotes

 

[1] Regaudie, Tiffany (2014), The flu vaccination; separating fact from fiction. T8N Magazine, St. Albert, AB: Winter, 6-8.

 

[2] Schneider, William H., (2009), Smallpox in Africa during colonial rule, Medical History An international journal for the history of medicine, Cambridge University, 63(2), 193-227.