Conor and Dad Get Outdoors YAY! Friday, April 17 09

Conor and Dad get outdoors, yay!

It was a long, hard winter this year and Friday was very warm and mild. It was great getting out on the trail with Conor again. Unlike Dad, Conor put on no winter weight. Here's a few pics of Conor; no need to show Dad trying to keep up.





autism

Autism Awareness and Severely Autistic Adults

April is Autism Awareness Month in the US.

Here, in Canada October is officially Autism Awareness Month but living next door to the US media giant many Canadians receive more media coverage during April than October. Given the state funded CBC's obsession in the past few years with promoting the Neurodiversity, "WE don't want a cure", ideology of some persons with HFA and Aspergers Disorder that is not necessarily a bad thing.

But whether the coverage arises from Canada, the US or the UK, it is very difficult to find news or features about persons on the severely autistic end of "the spectrum", those whose diagnoses are not in doubt, and who are doomed to lives of dependency, some in high security community residences and some in full scale institutional care. Contrary to some of the loopy rhetoric out there severely autistic persons do not reside in institutional care and then become autistic. They are there because their autistic deficits are so severe that they can not live safely in the community. There are some autistic adults who require institutional care for their own safety, security and well being.

If I missed a recent news article discussing the plight of the severely autistic, particularly severely autistic adults, amongst the thousands of Autism Awareness Month features, please feel free to forward to me a link.

autism

Autism's Gadfly Does Some Neurodiversity Myth Busting

Jonathan Mitchell does some Neurodiversity myth busting in his recent post More mythology from neurodiversity. Jonathan is commenting on the Dan Marino promoted video by Ari Ne'eman, a gentleman with Aspergers Disorder, and some other persons, at least one of whom is hard to believe has any type of autism spectrum disorder diagnosis, and their creation of new Neurodiversity flavored autism myths.

Jonathan suffers from a mild autism spectrum disorder. While he and I do not agree on all autism related issues I have great respect for his honesty. Jonathan's honesty is not held in the same esteem though by Neurodiversity ideologues who are angry at him, as an autistic person, for refusing to drink the Neurodiversity Kool-Aid.

Jonathan addresses a number of ND Myths in this comment, including one of my often repeated criticism's: the insistence of someone like Ari Ne'eman, a very intelligent, highly articulate, high functioning individual, diagnosed at age 12 with Aspergers Disorder after initially being diagnosed with ADHD, to pretend to be able to speak on behalf of ALL persons on the autism spectrum of disorders even the most severely affected by Autistic Disorder. Ari Ne'eman uses the royal "we" to pretend to speak about autism disorders on behalf of people he has never met, with whom he has nothing in common and, as in the case of my son, with whom he does not have the same autism spectrum diagnosis.

My son Conor has Autistic Disorder, assessed with profound developmental delays. He has absolutely nothing in common with Ari Ne'eman, previously diagnosed with ADHD, and now diagnosed with Aspergers Disorder. Conor's Autistic Disorder deficits include limited communication and understanding of abstract concepts. He engages in self injurious and occasionally aggressive behavior and he will NOT, like Mr. Ne'eman, live an independent life, attend college and pose in numerous media interviews in which he purports to speak on behalf of anyone, including himself.

Read Jonathan Mitchell's More mythology from neurodiversity comment if you want an honest, informed analysis of Neurodiversity myth making nonsense.

autism

Autism Reality NB Blocked At lbrb

One of the frequent visitors to this site is someone whose autism views I do not share.

Kevin Leitch of lbrb, a leading Neurodiversity site has published a few, distorted caricatures of the views I express on this site. I often visit LB/RB, now lbrb, to see what nonsense the ND crowd is up to and to get the ND spin that gets flushed into the internet at least once a day. I note that several of my Facing Autism blog comments have been featured in caricatures offered up at lbrb.

Notwithstanding the frequent visits to my site Kev, and his partners ,don't like to acknowledge visits here for some curious reason. I, however, have no problem acknowledging that I visit lbrb to try and introduce some reason into the largely ND ranting that goes on there. So I joined the Google friend connects feature now located at lbrb and which I also have in the sidebar here. I saw my Google icon of my scruffy bearded face after I did. Today I visited lbrb again and the scruffy old beard icon was gone. I thought I must have made a mistake in registering so I attempted to re-register and I got the following message:

I am disappointed that Kev, Sullivan and the ND gang at lbrb wish to exclude me from their circle of friends. Since I know they visit here often I will promise that if they let me join I will behave myself and never make any more reality based comments about autism disorders. Well, I promise to try anyway. Of course maybe that is not possible, having a 13 year old diagnosed with autism 11 years ago, a son with autistic disorder and profound developmental delays, I find it hard to imbibe the ND Kool-Aid found at lbrb. But hey, I tried to be "friends" anyway.

I don't hold grudges though Kev. You and Sully and Mike Stanton and the ND gang are all welcome here, as Google connect friends, on my site. In fact, truth be told, I do kind of view it as an honor to be blocked from your site since you do nothing to help autistic children by promotion of an anti-treatment, anti-cure, pretend the severely autistic do not exist ideology.

I assume my contrary, reality based, perspective is making you uneasy.

That must be a good thing.

autism

Change.org's Straw Man Attack On Autism Recovery

Change.org represents a progressive voice on many fronts but when it comes to children and adults with autism spectrum disorders it has chosen to embrace the regressive ideology of Neurodiversity (ND). The ND ideology is regressive on many fronts, it is inherently undemocratic in that adults with mild versions of autism disorders assert a right to speak on behalf of autistic children they do not know, some of whom are far more severely affected then they, by autism disorders. ND is also regressive in its opposition to cure or recovery from autism spectrum disorders, neurological disorders which impair the lives of many children and adults.

Change.org hired two ND bloggers, Dora Raymaker and Kristina Chew, both of whom subscribe to the "ND, autism can not and should not, be cured" manual. Ms Chew, although she is a parent who has recognized the serious deficits accompanying her own son's autism disorder by having him receive ABA therapy AND at least two autism targeting medications, frowns upon the notion of curing autism or recovery from autism. In "Recovery" from Autism: Fantasy and Reality Ms Chew again criticizes the idea of recovery from autism this time by a critique of The Horse Boy: A Father's Quest to Heal His Son, a recently published account of a father's apparent attempt to recover his son from autism by taking him to ride horses in Mongolia and visit with Shamans. Ms Chew justifiably critizes the bizarre notion that autism recovery could result from such activities. But she is not content to take a well deserved shot at Mongolian horse nonsense. She continues on with a rambling general attack on the concept of recovery from autism:

"I've yet to read The Horse Boy to see what its covers hold so, beyond expressing my reservations about talking about "healing" a child from autism---because focusing on "recovery" from autism twists discussions in endless circles about causes and treatments, rather than about lifelong needs and supports and services---I'll just say that life as some mixture of light and loss and goodness and dark----that has been what our journey with Charlie has been like. There've been many epic moments when I felt I was witnessing about the grandest thing the universe could provide---Charlie riding his bike on a street in a midsize north Jersey town, Jim pedaling proudly behind---and it's all been real, no fantasy, and the result not of magic but of hard work, of sweat, some tears, and love."

Kristina Chew has apparently abandoned the idea that her son with an autism disorder, who has received ABA, pharmaceutical and biomedical treatments for his disorder, will recover from his autism. I can understand the feelings that must bring about as he grows older, as my son is now 13, and realize that he will not be living an independent life. But I can not follow Ms Chew down the path of rejection of the concept of autism cure, treatment or recovery.

Cures might arrive with more research on causes of autism, a subject of which Ms Chew seems to be tired. If a safe effective cure or treatment can help my son in future I will want it for him. ABA was not generally available for Conor in his early years but has become available for him for several years because of determined advocacy by me and my fellow parents here in New Brunswick, Canada, because we had responsive , conscientious government leaders and because we had the assistance of some key academics and professionals who put together a unique program which has helped autistic children across New Brunswick. ABA does not mean recovery for Conor Doherty but it has meant acquisition of some important skills and in particular enhanced communication and reduced self injurious behavior. For some ABA might mean full recovery. For me Conor's gains, although not recovery, are enough to keep my spirits up and my hopes alive.

The studies and professional literature on autism interventions have been reviewed by such agencies as the American Academy of Pediatrics, the US Surgeon General, the NY State Department of Health, the Association for Science in Autism Treatment, the MADSEC (Maine) Autism Task Force and many others and these reviews of the literature indicate by means of various euphemisms, eg. "indistinguishable from chronological peers", that recovery is possible in some instances using ABA. These sources and the method they endorse, ABA, are much more informative than generalizations made from one person's experiences whether it be Kristina Chew's experiences with, and feelings about, attempts by her to recover her son from autism or my efforts with Conor which have resulted in some important gains for Conor, albeit far short of recovery. Because Conor is not near "recovery" though I do not attack the merits of others seeking recovery for their child from autism or the possibility that it occurs.

The Center for Autism and Related Disorders, Inc., which includes Doreen Granpeesheh Ph. D., who has had a formidable career actually helping autistic children recover from the negative realities of autism disorders, now has a blog site on which is posted articles and videos concerning recovery from autism. For examples of recovery, and informed balanced discussion of autism recovery, parents and the public would do well to skip past the anti-cure, ND pages of Change.org and visit the CARD blog site. The CARD people, unlike Change.org, are not ideologically opposed to autism treatment or cure. They have not given up on helping autistic children recover and they are backing up their ideas with action to actually help autistic children.

Recovery, according to some people actually dedicated to, and involved with, helping autistic children, is possible. Cures might be possible in future. Do not let a regressive ideology or one mother's fatigue and pessimism dissuade you from seeking to recover your child.

Avoid the horse and dolphin nonsense, for sure, but seek out credible, evidence based intervention and trained providers for your autistic child. And lobby your congressman or member of parliament to increase funding research into the causes of, and cures for, autism disorders.

Our children with autism disorders deserve our best, unfailing, and untiring efforts.

Do not, out of fatigue or fear, surrender to the ideology of defeat.

autism

Study Suggests Melatonin Helps Children With Autism Fall Asleep

Science Daily reports on a new study which suggests that melatonin can help children with autism spectrum disorders and children with Fragile X fall asleep:

" the senior author, Beth L. Goodlin-Jones, PhD of the M.I.N.D Institute at the University of California Davis Health System in Sacramento, Calif., treatment with over-the-counter melatonin supplements benefits children of all ages, which helps alleviate some of the additional stress that parents of special-needs children experience"

In addition to over the counter melatonin supplements the study authors recommend behavior therapies and sleep hygiene practices to help children with autism and Fragile X sleep.

Conor has had the occasional evening where he takes a couple of hours getting to sleep but overall we can't complain about his sleeping patterns. Conor does receive behavioral therapy which, in my opinion as his father who has been actively involved with raising him for 13 years, helps keep his stress levels low throughout the day.

The most significant factor for Conor's good sleeping patterns though is one that I think works for every one, child or adult, autistic or not - a consistent bed time with pre-bed routines. Conor looks forward to Eight Zero Zero (8:00) each evening. He literally runs up the stairs to the upstairs washroom where Dad loads the toothpaste for brushing and we go through a routine involving things like effusive praise for how well he has brushed his teeth and washed up. Last night Conor ran up the stairs and, when finished in the washroom, on into his room where he jumped into bed.

Exercise also helps. When the good weather hits in the spring the extra daylight, which might make for more difficulty getting to sleep, is off set by the greater amount of time outdoors walking and getting fresh air with Dad. It certainly helps Conor's Dad :-)

In describing the good fortune we have had with Conor's sleep habits I do not mean to diminish the difficulties faced by other autistic children and their families who are not so fortunate. I just want to suggest regular bed time and routine, together with outdoor exericse and fresh air though, if possible, might be of assistance if currently lacking.

autism

O Canada! Flag Season Starts Again for Conor

With the arrival of warmer weather Conor gets to help Education Assistant
Brad Daniels raise and lower the flags at school, including his favorite, the Canadian flag.

O Canada, Conor loves you.

O Canada!
Our home and native land!
True patriot love in all thy sons command.
With glowing hearts we see thee rise,
The True North strong and free!
From far and wide, O Canada,
We stand on guard for thee.
God keep our land glorious and free!
O Canada, we stand on guard for thee.
O Canada, we stand on guard for thee.

autism

Autistic Boy Left Alone On Bus for an Hour

As reported on ParkRidge Herald-Advocate, a 4 year old Chicago area autistic boy was left alone on a bus for an hour while the bus driver, Yolande Knight, 60, shopped inside a card and party supplies store after dropping off other students. Kinght was arrested and charged with child endangerment and admitted that she ignored an alarm that requires her to walk to the rear of the bus when passengers exit.

An hour after his dad strapped him onto the bus the boy's mother received a call from the school aying that his back pack had arrived at school but not the boy. Police were contacted and spotted the bus outside the party supplies store with the boy locked inside.

Curiously the police allowed the driver to take the boy to school a decision which has the boy's parents, and this blog writer, puzzled.

The bus driver, Yoland Knight, no longer works for the bus company. Unfortunately the boy, who enjoyed taking the bus to school, is now being driven by his parents whose trust in the bus system and the school has been shaken.

autism

Autism Society Canada Applauds Bill C-360 And Calls For A National Autism Strategy

Autism Society Canada hopes the introduction of Federal Autism legislation will pave the way for a National Autism Strategy in Canada

Ottawa - April 15th, 2009 – for immediate release - Autism Society Canada (ASC) applauds the introduction into the House of Commons of Bill C-360, An Act to amend the Canada Health Act (Autism Spectrum Disorder). In introducing the Bill, Sudbury M.P. Glenn Thibeault said: “Yesterday was World Autism Awareness Day. I still wear my awareness pin proudly. We as parliamentarians need to work together to provide individuals with ASD and their families with the right supports.”

Support for improving and augmenting services for persons with Autism is widespread. In separate letters acknowledging World Autism Awareness Day on April 2nd 2009, the Leaders of Canada’s federal Parties recognized the growing need to assist those affected by Autism Spectrum Disorder (ASD).

The summary of the Act states that: “The purpose of this enactment is to ensure that the cost of Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) for autistic persons is covered by the health care insurance plan of every province.”

ASC encourages all within the Autism community to ask their Member of Parliament to support Bill C-360 which gives universal access to this scientifically validated and effective treatment. ASC also urges that work continue in order to provide other needed treatments and services in the best interests of all individuals with autism.

Christine Dade, President of Autism Society Canada, remarked: “Providing Applied Behaviourial Analysis and Intensive Behaviourial Intervention in a timely and effective way for all those who need it is definitely a step in the right direction. It isn’t everything that is needed, however, and ASC strongly urges Canadians and their leaders to work towards a National Autism Strategy as well.” A National Autism Strategy, as called for in former Fredericton M.P. Andy Scott’s Private Members Motion M-172 (passed in the House of Commons over two years ago), includes:

• the development, in cooperation with provincial-territorial governments, of evidence based standards for the diagnosis and treatment of autism spectrum disorder;


• the development, in cooperation with provincial governments, of innovative funding methods for the care of those with autism spectrum disorder;


• consulting with provincial-territorial governments and other stakeholders on the requirements of implementing a national surveillance program for autism spectrum disorder;


• the provision of additional federal funding for health research into autism spectrum disorder.

Autism Society Canada looks forward to working with all stakeholders and the Government of Canada to develop a National Autism Strategy. Much more needs to be done to address the glaring gaps in services and supports across the lifespan of the individual with autism. The inherent Rights of all Canadians living with an ASD should be enhanced, protected and enforced by appropriate legislation in each province and territory.

Autism Society Canada / La Société canadienne de l’autisme Box/C.P. 22017, 1670 chemin Heron Rd, Ottawa, ON K1V 0C2 Phone/Tél: (613) 789-8943

E-Mail: info@autismsocietycanada.ca

Website: http://www.autismsocietycanada.ca

FB: http://www.facebook.com/home.php#/group.php?gid=49558557641

Charitable registration number: 13160 7657 RR 0001

autism

ASAT Association for Science in Autism Treatment Newsletter Returns

ASAT, the Association for Science in Autism Treatment, has announced the return of its newsletter, Science in Autism Treatment. The newsletter ran from 1999-2003 and will return this summer.

Back issues are still available for viewing at http://www.asatonline.org

This free quarterly newsletter will feature:

*Featured articles by leading advocates for science-based treatment
* Clinical Corner responses to frequently asked questions about autism treatment
* Detailed summaries of specific treatments for autism
* Book reviews
* Reviews of published research to help consumers and professionals access the science
* Interviews with professionals advancing science based treatment and confronting pseudoscience
* Discussion of accurate and inaccurate portrayals of autism and its treatment by the media
*Guidelines to help consumers access effective treatments

YOU can join the mailing list to receive the FREE newsletter by visiting the ASAT website at:

www.asatonline.org/signup

autism

Autism's Wandering Children

A recent occurrence in Indiana is another reminder of one of the realities of raising autistic children. In some cases, a parent has to be on 24/7 alert to make sure that the child, even when he or she becomes an adult, does not wander away into danger. I have posted on this blog several times about news such as that of an adult, severely autistic man, Keith Kennedy, who wandered away from camp into the woods for a week or the child who wandered off into traffic never to return.

I have also talked here of my own experience several years ago when Conor wandered away from the house while I was occupied on a business call. He wandered across a busy parking lot and main street where he was picked up by a good samaritan and taken to a nearby convenience store where I was able to recover him after calling 911.

In the recent Indiana case an exhausted mother, fatigued in part by allergy medications, sat down on a couch and fell asleep. When she awoke an hour later the front door of her apartment was open and her child was gone. The child was found wandering and police were called who in turn called child protection. While the police waited for Child Protection Services to arrive other police officers found the mother driving around looking for her child.

Local CPS is continuing to evaluate the case in Indiana but this is one autism parent, in another part of the world, who understands the challenges faced by that Indiana mom. The reality is that some autistic children require constant supervision and there are times when life, a phone call, fatigue, an emergency, or a dozen other reasons, does not always cooperate.

autism

Autism Rising: Autism Rates Higher Near Toxic Dump Sites

The ideologically based belief that autism is entirely genetic has been taking a beating in the past few years as an Autism Research Paradigm Shift has been taking place which focuses more attention on the possible environmental factors involved in causing autism disorders. And the evidence of possible environmental causes or triggers of autism disorders continues to accumulate.

The UC Davis Mind Institute study is a recent highlight of this shift towards open examination of environmental triggers and factors contributing to the increasing diagnoses of autism disorders. The The Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research - January 26, 2009 essentially codified the Autism Research Paradigm Shift with numerous elements of its Strategic Plan emphasizing possible environmental contributors and causes of autism disorders.

Now Catherine DeSoto has published a correlational study, Ockman's Razor and Autism: The case for developmental neurotoxins contributing to a disease of neurodevelopment, at Neurotoxicology doi:10.1016/j.neuro.2009.03.003 which finds that:

"within the state with the highest rate of ASD, the rate is higher for schools near EPA Superfund sites, t (332) = 3.84, p = .0001. The reasons for the rise in diagnoses likely involve genetically predisposed individuals being exposed to various environmental triggers at higher rates than in past generations.

The study is the subject of a synopsis by Heather Patisaul, Ph.D. of North Carolina State University, at Environmental Health News. Ms Patisaul explains that the Superfund sites frequently contain such pollutants as chloroethelyenes, benzene and metals (lead, mercury, cadmium, chormium, arsenic). She reports that the study found autism rates signficantly higher near the toxic Superfund Sites:

Rates of the disorder were one and a half times higher in the districts within 10 miles of the toxic sites. That translates into 1 child in 92 in districts closer to the sites compared to 1 child in 132 in the districts farther away. Schools within a 20-mile radius of Superfund sites had similar autism trends as the schools with 10 miles of the sites.

Ms Patisaul cautions that correlational studies such as this might first identify possible causal relationships but will require further information to verify any such association. Hopefully the studies necessary to verify or refute possible connections and causes will be conducted without unecessary delay.

autism

Autism Awareness: More Einstein Was Autistic Nonsense

The formula for concluding that an historical genius was autistic is simple:

Genius + Eccentricity + Aversion to Small Talk = Autism Spectrum Disorder.

Autism researchers in the UK and Ireland are at it again. Not finding causes of autism or developing knowledge of treatment and possible cures. No our good friends on the other side of the Atlantic are busy promoting the "Einstein was Autistic" picture of autism spectrum disorders. When it comes to autism, our English and Irish friends have no qualms about abandoning scientific certainty and the realities of the severely autistic living today for ideological, historical speculation about whether Einstein, and in addition Newton might have been autistic.

The bold headline on World Update News declares that Einstein and Newton ‘had autism’. In the article Cambridge University researchers are reported to have stated that Einstein might have had Aspergers. The article itself is fairly balanced and cites Dr. Glen Elliot from the University of California at San Francisco as stating that the eccentricities of both esteemed scientific geniuses can simply reflect their high intelligence without indicating that either was autistic. Professor Simon Baron Cohen of Cambridge University, however, clings to the genius as autism speculation. In February Professor Michael Fitzgerald offered his latest in a very long list of historical geniuses that he specultes were autistic - Charles Darwin. Professor Fitgerald even speculates that Mozart was autistic. This is the same Mozart who married, had several children and was a member of more than one lodge including the Freemasons in which he achieved the status of Master, had many friends and was well regarded. Just your typical autistic?

In the formula above "learned" professors like Mr. Baron Cohen and Mr Fitzgerald simply disregard some uncomfortable realities in making their historical speculative diagnoses:

1) Total lack of observation of the "patients"

2) Reliance on second and third hand accounts of persons no longer alive many of whom were not health care of psychological professionals.

3) Contrary evidence concerning ability to form intense interpersonal relationships iincluding marriages.

4) Lack of discomfort in public speaking.

Professors Fitzgerald and Baron Cohen are academics. They are of course free to speculate about any subject that flits through their consciousness. But it seems strange that these two learned men do not find it worthy to mention that there are many severely autistic persons living lives dependent on the care of others, some with limited intellectual and practical skills.

It seems, for one reason or another, that the learned professors are ashamed of the plight of the severely autistic who live with us today, preferring to speculate about long dead historical geniuses.

autism

Autism's Phony War

Autism has almost become a synonym for controversy.

The role that vaccines play, or do not play, depending on which camp one is a member of, generates the most heat and is often described as the vaccine-autism war, on this blog, generally, and by respected experts like Dr. Bernadine Healy. One issue that also generates controversy, and has been described as a "war", is the issue of whether autism should be cured or not. Unlike the vaccine-autism war though this war is a phony war, one that does not involve a serious contest between legitimate interests.

In the vaccine-autism war the public has a legitimate interest in ensuring the continuation of public vaccine programs. Parents concerned about their children also have a legitimate interest in ensuring the safety of substances injected often and directly into the bodies of their young children at early ages, including the first day they are born, and even while in the womb through vaccination of pregnant women. These intense and legitimate interests, generate much legitimate controversy.

Even the financial interests of pharmaceutical companies and vaccine patent holders like Dr. Offit are legitimate. Vaccines have saved many lives and without the financial interests of pharmaceutical companies and vaccine patent holders vaccines would not be produced. These competing, but legitimate interests, generate a real "war" in public discussions.

In autism's phony war there are no legitimate competing interests. The heat that does exist in public discussion of autism cures is generated largely by those with no legitimate interest in whether a cure for autism is found or not. The anti-cure "movement" is essentially the ideology of a few persons with High Functioning Autism (HFA) and Aspergers. These are generally intelligent, articulate people who can speak for themselves and who do not want to be cured of their autism disorders. All well and good. The thing is ....... no one is trying to force a cure on them for THEIR autism conditions.

No one, to my knowledge, is trying to force Michelle Dawson, Ari Ne'eman, Amanda Baggs, Alex Plank or any of the other HFA or Aspergers media regulars to seek a cure. These people speak about their opposition to curing autism in the abstract at best. At worst they are trying to interfere with the rights of other autistic people to obtain a cure and the rights of parents to seek a cure for their childrens' autistic disorders.

Jonathan Mitchell author of the Autism's Gadfly blog is a person with an autism disorder who has received the hostility of the anti-cure Neurodiversity autism bloggers because he does not accept their ideology. He has expressed the desire to be cured of his autism disorder. That is his right and his right alone. Harold Doherty does not have the right to tell Mr. Mitchell to be cured or not of his autism. Neither do Michelle Dawson, Amanda Baggs, Ari Ne'eman, Alex Plank or any other anti-cure autism ideologues.

For daring to express a desire to be cured of his autism Jonathan Mitchell has been described by one Neurodiversity extremist, "Timelord", as an autistic Joseph Goebbels. Timelord has also started a blog site specifically to target Jonathan Mitchell whom he smears wrongfully as a coward and a traitor, Mitchell's Gadfly. Timelord is a 40 year old unemployed Australian with Aspergers as described on his posted profile at another site he authors:

What right does Timelord Phil, an unemployed 40 year old, diagnosed with Aspergers Syndrome, have to tell Jonathan Mitchell, an autistic adult, that he should not seek to be cured of his autism? The obvious answer is: none. He has no right to oppose Mr. Mitchell's right to seek a cure. Period. When an autistic adult seeks a cure for his autism disorder other autistic adults have no legitimate competing interest and there is no real conflict, there is no real "war".

Some autistic persons, including children and adults, lack the cognitive and communication skills to live independently in the real world. Some injure themselves. Parents have a legitimate interest, a responsibility and a duty, to act to help their children develop to their fullest potential and to prevent injury to their autistic children when they seek to injure themselves. There is no competing societal interest. To the contrary society has an interest in ensuring that autistic persons are able to be cured of a disorder which causes serious pain and suffering and results in lives of dependency, often at state expense.

Self-injury is a problem for many people with autism disorders. I have seen it and shown it on this blog site with pictures of my son's self inflicted bite marks on his hands and wrists. Neurodiversity icon Michelle Dawson also testified about her personal autistic self injury in her Canadian Human Rights Tribunal proceedings Dawson v. Canada Post Corporation, 2008 CHRT 41. In that cased Ms Dawson brought several complaints against her former employer Canada Post Corporation alleging that CPC discriminated against her based on her disability: autism. The Tribunal rejected some of her complaints but found that some CPC employees had harassed Ms Dawson because of her disability and that CPC was responsible for the acts of its employees and officers.

In rendering its decision the CHRT summarized Ms Dawson's evidence and in particular Ms Dawson's own testimony about her self injurious behavior:

[58] Ms. Dawson testified that after she disclosed her diagnosis to Canada Post, everything went wrong. Before that time, even though Ms. Dawson came to work with self-inflicted injuries, this did not seem to create any qualms or concerns with respect to Canada Post. Things started to change, she stated in her testimony, after some Pierrefonds employees felt threatened by Ms. Dawson and sent a letter to that effect to Ms. Daoust in July 1999.

...


[97] In her testimony, Ms. Dawson spoke about her self-inflicted injuries. Ms. Dawson testified that, at the very worst, there was probably a week or two weeks where two weeks in a row, she would have something, that she would injure herself. She added, however, that this would be rare. According to her, she would self-injure about once a month and never more. She testified that for cuts, it would not be more than one small area affected and not more than one or two cuts, but they would be in the same place.

[98] Ms. Dawson testified that, well before Canada Post knew she was autistic, she would show up at work with self-inflicted wounds, that she did not suddenly start showing up with obvious signs of self-injury in 1999. According to her, any time after 1990, she would have had at times signs of self-injury, sometimes more than at other times, sometimes with long gaps.


Even the expert witness Dr. M, who, based on the Tribunal's description, was obviously Dr. Laurent Mottron, and who promoted his own pet theories about autism intelligence, acknowledged that autistic persons "sometimes" engage in self injurious behavior:


[110] Dr. M. testified that, while the ordinary person will become aggressive when anxious, autistic individuals will sometimes self-injure. This is especially the case, according to Dr. M., when an autistic person cannot understand a situation or cannot get an answer to a question. According to Dr. M., self-injury is the most extreme response to a psychological impasse that has no solution. It is a response to a disorganization of the world. It is the way for an autistic person to respond to negative situations whereas non autistic persons will show anger. Dr. M. stated in his testimony that he was aware of Ms. Dawson self-injury behavior. He had seen one of the wounds she had inflicted upon herself. For Dr. M., a self-inflicted injury is a sign of a deep psychological suffering.

I can't pretend to have any great respect for Dr. Mottron's views of autism generally. I don't care how many learned articles he has written based on his studies of persons with High Functioning Autism, Aspergers and Autistic Savants, his views about autism generally are inconsistent with what I have seen in my son with Autistic Disorder, with the knowledge that I have from working as a lawyer with families with autistic children and Aspergers, my involvement in autism advocacy in New Brunswick and my visits to psychiatric facilities where some autistic adults live out their lives in the care of strangers. Nonetheless even Dr. Mottron acknowledges that self injury is "sometimes" a feature of autistic behavior.

For the record here is a re-post of a picture of my son's self inflicted bite mark on his hand. (Dr. Mottron should also be informed that with ABA we have been able to increase our ability to communicate with Conor, he with us, and reduce such self injurious behavior) :


Those who oppose cures for themselves or for their autistic children have no right to oppose the development of autism cures for autistic adults like Jonathan Mitchell or for children whose parents seek a cure for their disorders. There is no legitimate basis for fighting to ensure that autistic children, particularly severely autistic children, should be prevented from being cured of a disorder which results in some cases in cognitive impairment, lives of dependency, and self injurious behavior. There is no legitimate basis to oppose the rights of parents to help their children live the best life possible without suffering from a debilitating neurological disorder.

Autism has many wars the cure or don't cure controversy though is a phony war between those with a legitimate interest in curing themselves of their autism disorder or their own children and those who oppose that right on abstract, ideological grounds.

Autism's phony war generates unnecessary heat and gives governments and service provides an excuse to refrain from providing needed services and funding for research. It does a great disservice to autistic adults seeking cures and for autistic children whose parents, acting in their children's best interests, and with the responsibility to do so, seek to cure them.

NOTE: At the request of Timelord Phil his picture has been removed from the profile posted above. The picture seemed innocuous to me, a picture of a guy in a black and white striped referee's jersey with his arms crossed, but it is his image and his request.

autism

Mozart's Requiem In Fredericton

In the "nothing to do with autism" department I was able last night to attend, with my oldest son, a performance of Mozart's Requiem by the The Fredericton Choral Society and the Fredericton Chamber Orchestra at the Wilmot United Church in Fredericton. It was my first time attending a live performance of any classical music; unless you count my attendance at a Rolling Stones concert in Moncton a couple of years ago :-)

I do not pretend to be musically learned or sophisticated. As a child I did enjoy the classical music sometimes featured on Bugs Bunny cartoons . My interest took a leap forward with the release of the multiple award winning Amadeus. The internet, better computer sound quality and good quality CDs and DVD's have all made classical music more accessible and enjoyable. Last evening though I attended my first live classical performance and I was excited to see and hear one of Mozart's most famous compositions, Requiem, as completed by Süssmayr and performed by the Fredericton Choral Society and the Fredericton Chamber Orchestra.

We arrived early and were able to sit only 3 rows from the front of the orchestra and the conductor. It was an amazing experience for me and my son. The Fredericton Chamber Orchestra will present Robert Schumann's "Spring Symphony and some other pieces at the Wilmot United Church on May 2. I hope to be there again with my son.

Never too old to experience something new and amazing.

autism

Autism Is A Neurological Disorder Not A Culture or Shared Communication Style

When Neurodiversity blogger Dora Raymaker at the Neurodiversity (Autism) page of Change.org says "we autistics" and pretends to speak on behalf of severely disabled autistic persons she doesn't know, and has little in common with, she is misrepresenting her authority to speak on their behalf. Autism is a spectrum of neurological disorders distinguished by very substantial variations in intellectual and communication abilities.

Dora Raymaker in Deaf Culture, Autistic Culture, and Language refers to what she calls "autistic communication styles" and "autistic culture":

While autistic people don't have a formal language like ASL, we do have some shared communication styles, shared ways we use language or other types of communication, and some shared preferences for communication styles that are different from other groups of people. In terms of community-building, someone once said to me "the Internet is to autistic people what sign language is to deaf people."

Some severely autistic persons, unlike Ms Raymaker, have very limited communication skills and very limited understanding of language and abstract concepts. She has no legitimate basis on which to speak for them or to claim that they all share a common communication style or are part of an "autistic culture".

Dora Raymaker is misrepresenting autism disorders to the general public. My son has a serious neurological disorder, Autistic Disorder with profound developmental delays. He requires 24 hour adult care. He is severely autistic. He is not part of Dora Raymaker's "autistic culture" or "shared communication style". And Dora Raymaker does not speak for him.

autism

Conor and Dad's First Spring Trail Walk - Sort Of

After a long winter I have been trying to get out walking on the trail system with Conor. Today we got out for a very, very short walk when the cold wind by the river persuaded us to try again tomorrow. Still it was nice to get out in the fresh air. The gentleman playing the horn in the pictures below wasn't phased at all by the weather. Conor had other ideas though, like heading home and getting warm.

autism