Autism's "Royal We"

Autism discussions are often marked by the use of the "Royal We" (or its variation the "Royal Us") in which some persons with either Aspergers or high functioning Autism implicitly speak on behalf of all persons with autism. Wikipedia explains the Royal We:

Pluralis majestatis

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Pluralis majestatis ("majestic plural") is the plural pronoun where it is used to refer to a single person holding a high office, such as a monarch, bishop, pope, or university rector. It is also called the "Royal 'we'" or the "Victorian 'we'." The more general word for the use of we to refer to oneself is nosism.^[1]

The idea behind the pluralis majestatis is that a monarch or other high official always speaks for his or her people.^{[citation needed]} For example, the Basic Law of the Sultanate of Oman opens thus:

On the Issue of the Basic Law of the State We, Qaboos bin Said, Sultan of Oman…^[2]

Famous examples of purported instances:

• We are not amused. — Queen Victoria (in at least one account of this quotation, though, she was not speaking for herself alone, but for the ladies of the court.^{[citation needed]})
• The abdication statement of Nicholas II of Russia uses the pluralis majestatis liberally, as in "In agreement with the Imperial Duma We have thought it well to renounce the Throne of the Russian Empire and to lay down the supreme power."^[3]
• 
  

Arguably the most famous use of the Royal We is the essay by Jim Sinclair "Don't Mourn For Us". Apart from the title Don't Mourn For Us is rich in Royal We declarations"


I invite you to look at our autism, and look at your grief, from our perspective:

This is what we hear when you mourn over our existence.

This is what we hear when you pray for a cure.

This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

But don't mourn for us. We are alive. We are real. And we're here waiting for you.


"King Jim" Sinclair went well beyond the Royal We in presuming to speak on behalf of all autistic children including those with Autism Disorder, some of whom lack his considerable intellectual and communication gifts. He also used his Royal Insight to tell parents of children newly diagnosed with autism what they were thinking and feeling in responding to the realities of their children's diagnoses. "We" were in fact mourning the child we should have had, wishing we could replace the people behind our children's faces with entirely new non-autistic people. Bad, bad parents, we should all be banished to the stocks. And if you can believe some of essays by parents of autistic children praising autism as a different perhaps better way of thinking and living, praising the joy of autism, it appears they at least heard the Royal message. Treatment bad, cure bad, ABA bad, autism good, autism joyful.

Of course no mention of Autism's Royal We would be adequate if it made no reference to another very high functioning autistic adult, diagnosed as an adult, who also uses the Royal We in her relentless anti-ABA campaigns before courts, Parliament and the media in Canada. In The Word Is Out About Autism, Canada In The Era Of Autism Advocacy Michelle Dawson also made extensive use of the Royal We, "Queen Michelle" told the Canadian Senate Standing Committee
on Social Affairs, Science, and Technology that:


There is no consideration of who autistics might be and what we might need. Either we are horribly sick or we aren’t, depending on what non-autistics need.

Either we are horribly sick or we aren’t, depending on what non-autistics need.

we are most reliably defined by our strengths, our innate autistic strengths, which exist in all autistics regardless of how our level of functioning is judged.

1. That this Committee, and the Senate as a whole, apologize to autistic Canadians, for using your power and resources to promote and distribute false and pejorative information about autistics which is likely to be damaging and dangerous to us.

3. That the above-mentioned final report make it clear that autism is not a mental illness; that autism is receiving a great deal of attention due to the efforts of autism advocates; and that this attention, because it arises from factually false and ethically indefensible portrayals of autistic people, has harmed and damaged us.

Apparently though, not all higher functioning autistic persons reside in the Royal Autism Courts of King Jim or Queen Michelle. In Autistic Blogger Jonathan Mitchell Says NO To Neurodiversity I commented on a blog, NEURODIVERSITY: JUST SAY NO , by Jonathan Mitchell, an autistic person who rejects the anti-cure, anti-treatment, ideology promoted by Sinclair and Dawson and who asserts that some autistic persons DO wish to be cured. That post prompted some hostile, personal attacks on Mr. Mitchell which prompted my follow up commentary "House Autistic" Or More Neurodiversity Trash Talk.

Mr. Mitchell challenged the assumption that the anti-cure ideologies of some autistic persons represented the views of all autistic persons and for that was decried as a "liar":

A number of high functioning autistics claim that there is a consensus among all autistic persons that finding a cure for autism would be a horrible thing. Autism is a part of who they are and to take away the autism is to take away the person. They go further to claim that autism is not really a disorder but just a different form of brain wiring--some call this philosophy "neurodiversity".

Some of them do acknowledge that autism is a disability. However, there is a distinction between a medical model of disability-wherein the person has a disease state and the social model of disability--the disabled person would not be at a disadvantage if society made accommdoations for them.

I am a diagnosed autistic, nonverbal, feces smearing at age 3, 8 year veteran of special education yet I do not share this view. I long for a cure for autism though a cure at age 52 is not the same as at age 3, even in the unlikely event of a cure being found in my lifetime. Somehow I got missed when they took the census. So they are incorrect about all autistics.

Mr. Mitchell is not the only autistic person who rejects the anti-cure ideologies of King Jim and Queen Michelle. There are in fact other high functioning autistic persons for whom they do not speak. And it is difficult to see how they speak at all on behalf of those autistic persons with whom they have very little in common.

People as eloquent as Jim Sinclair or as intelligent as Michelle Dawson do not share the same realities of life as a much lower functioning autistic person with limited communication skills and limited understanding of the world, someone like my son Conor. Like Ms Dawson I once worked for Canada Post, albeit as a lawyer. It can be a complex and challenging work environment regardless of one's position. To be a letter carrier or postal clerk requires signficant command of language. My son does not know what Canada Post is, he does not know what a PO Box or postal code is, or what it represents.

Jim Sinclair and Michelle Dawson are free, in democratic societies, to use the Royal We in presuming to speak on behalf of all persons with Autism. But my son Conor Doherty, diagnosed at age 2, with Autism Disorder, with profound developmental delays does not sit as a subject in their courts. If safe, effective, treatments and cures are found for him then I will not hesitate to seek their application for Conor's benefit, to improve his life, to help him experience life to the fullest.

Autism Disorder and Impulse Control

There are many puzzling features of autism. Hence the puzzle symbol for autism. Some of the mystery is being removed as our daily news brings us reports of new studies mapping the genetic and biological basis of autism. But even those areas are just beginning to be explored and while we are living through an Autism Knowledge Revolution there is much which remains unexplained and mysterious. Impulse control is one of those unexplained mysteries.

Even 10 years after Conor was diagnosed with Autism Disorder I am still startled by the impulses which suddenly seize Conor, and I mean seize literally, turning gentle acts of affection into potentially injurious and even dangerous acts of violence. Conor is very affectionate, tactile and observant. He likes to place his hands on either side of Dad's scruffy bearded face and study my face. But some times, suddenly, his hands dig painfully into my face. Sometimes he will grab my throat. Conor has also suddenly grabbed his mother by the hair and snapped her head and neck. Walking arm in arm downtown Fredericton, as we often do on weekends, he will occasionally grab by arm forcefully.

We have never thought for even a second that Conor intentionally tries to injure. I do not believe he has control during these instances. An impulse appears to overcome him suddenly and often is not preceded by any apparent triggering environmental stimuli. Conor simply appears physically seized by a powerful impulse.

I do not know what causes these seizure like impulses. I realize that my description of these events may sound like they are epileptic seizures and Conor's pediatrician may well confirm that lay person's guess. I know that there are many articles commenting on comorbidity of autism and epilepsy. Putting a new name on them may well be helpful in leading to other literature and understanding but I suspect that the behavior itself when it happens will always be startling and mysterious.

autism

Healthy 29 Year Old Man Suffers Taser Death In Minnesota

Mark Backlund, a 29 year old man, reported by his family to be in good health, has died after being tasered by Minnesota police for failing to cooperate after crashing his vehicle. The official line is that "more study" is needed to determine the cause of death. No word on whether officials will consider the remote possibility that the taser blast might have had something to do with it.

Autism and AutismPro - Buzzwords Aplenty But Where Is The Evidence???

AutismPro is a commercial internet based software package available from VEC Inc. VEC is undeniably expert at self promotion. It's latest of many Press Releases is "evidence" of VEC's very substantial self promotional skills. In an earlier commentary, AutismPro - "Somewhat" Evidence Based Internet Autism Intervention or Not Evidence Based At All?, I questioned the evidence basis of AutismPro. Apparently I needn't have worried. After all, highlighted in the latest Thomas Mitchell/VEC Inc. Press Release is information which appears to address my concerns:

The rich content represents evidence-based best practices for children within the autism spectrum of disorders as defined by the US National Research Council in 2001

The above quote is from renowned autism expert Kathleen A. Quill. That should be the end of any questions about the evidence bases of AutismPro right? Well no it isn't. Dr. Quill, as the Press Release acknowledges, is a professional advisor to AutismPro and has been since its inception. It is difficult to view her as a detached, objective source for assessing the merits of AutismPro.

More importantly the quote from Dr. Quill addresses none of the issues I raised in my earlier commentary. The various interventions offered in the AutismPro package vary in the strength of evidence in support. Further, when various interventions are offered in combination they become a new, eclectic, intervention for which new evidence is required in order to be able to claim that the intervention is "evidence-based". Presumably the qualifications, experience and skills of the person using the program would affect the results achieved.

Autism is a perplexing neurological disorder. The delivery of any autism intervention by a pre-packaged program far from the time and place of the challenges involved in educating or treating an autistic child introduces a new element to any intervention used. AutismPro is unquestionably innovative, a buzzword that will undoubtedly help sell it to Education Departments and School Districts but it is very much open to debate as to whether it is "evidence based".

None of which is meant to detract from the admirable job done by Mr. Mitchell and the VEC Inc. PR team in selling AutismPro. The latest Press Release includes an impressive list of buzz words and phrases some of which are set out below:

autism software solution
innovative software program
intelligent software systems
state-of-the-art Internet technologies
impressive collection of seasoned special educators
world-renown autism specialists
enable educators
educational achievement
collective brainpower of leading autism experts
comprehensive web-based special education case management system
robust reporting capabilities
comprehensive end-to-end instructional management system

The buzz words and phrases in this latest VEC release are impressive. But where is the evidence that AutismPro itself is an evidence based effective intervention for educating or treating autistic children? In a 2006 Press Release VEC Inc. stated that:

"Dr Holden is currently undertaking a research trial consisting of 46 families across Ontario, including 63 adult care providers and 52 children aged 2 to 9, using AutismPro. The study is being done in partnership with Autism Ontario and Autism Spectrum Disorder - Canadian American Research Consortium (ASD - CARC) out of Queen's University. Participants have been provided with a one year subscription to the program."

http://ww1.prweb.com/releases/2006/12/prweb489594.htm#

I had some concerns about the objective value of research trials being conducted by Dr Holden who was also an AutismPro consultant. But that being said, what were the results of the studies which were being conducted in 2006?

If AutismPro is an evidence based effective intervention for autistic children where is the evidence?

autism

Why I Find No Joy In Autism - Biting and Other Self Injurious Behavior

Above are two pictures taken a short while ago. Conor came home from a great day at school. He sat at a computer as he often does to view some of his favorite sites which he has bookmarked. For some reason, slow loading pages perhaps, I am not sure, Conor became very frustrated with the computer, suffered a meltdown and began biting his hand.

There are those who argue we should find joy in autism, we should view our child's autism as part of who he is and not try to cure him of his autism or change his true autistic nature. To me such reasoning is absurd. Not just wrong but absurd. Self injurious behavior, such as the biting shown above is one major reason why I feel that the joy of autism philosophy is perverse nonsense.

My son is beautiful, in Conor I find great joy, but not in his autism, not in his self injurious behavior.

autism

Capilano College ABA For Autism And Related Disorders Program

Capilano psychology instructor, Ellen Domm, was motivated by her seven-year-old son, Levi, to start a bachelor's degree program at the college that will teach professionals to treat children with autism and related developmental disorders, such as Asperger's syndrome. (CNW Group/Capilano College)

Parents of newly diagnosed autistic children will face tremendous challenges as they strive to help their children. They will receive a bewildering range of advice when responding to the reality of their child's autism. They will read essays by some, not all, but some, high functioning autistic persons and persons with Aspergers telling them that they should not try to cure or treat their autistic children. Even some parents of autistic children will advise them to surrender, to accept their child's autism as a blessing; they will be counseled to find the joy of autism.

For those who move past such side alleys and try to help their children through treatment and cure they will be confronted with a further bewildering array of quack treatments from NAET to swimming with dolphins. If they are lucky they will be pointed in the direction of the only substantially evidence backed treatment option currently available - Applied Behavior Analysis. In Canada though our federal governments have shown no serious interest in ensuring that funding for ABA treatment be made available to all autistic Canadian children regardless of which province they live in. But even then, if they live in a province that makes at least some contribution towards the cost of autism treatment and even if they have the independent finances to obtain treatment they find a shortage of capable ABA practitioners.

In New Brunswick local autism advocacy groups worked with the University of New Brunswick to establish an autism intervention training program to provide interventions to pre-school autistic children and in recent years we have enjoyed some success in pushing the program and the training into the school system with teacher aides and resource teachers receiving autism intervention training through the UNB-CEL Autism Intervention Training program. We are far short of the levels of trained personnel we need in these areas but we have made significant progress.

In British Columbia a mother has taken a similar route. The attached CNW news release, and photo above, tell the story of Ellen Domm a psychology instructor and mother of a seven year old boy diagnosed with autism at the age of three and the applied behavior analysis (ABA) bachelor's degree program that will commence in 2009 and which she helped establish:


Instructor's experience inspires new autism therapy degree program at Capilano College


NORTH VANCOUVER, Jan. 10 /CNW/ - Ellen Domm knows intimately how thousands of families in B.C. suffer due to a scarcity of qualified professionals to treat children with autism and related developmental disorders such as Asperger's syndrome. And the Capilano psychology instructor hopes a unique applied behavior analysis (ABA) bachelor's degree program inspired by her family's experience, which the college is launching in 2009, will help alleviate what she says is clearly a staffing crisis. When Domm's seven-year-old son, Levi, was diagnosed at age three with autism, a condition affecting the brain's normal development of social and communication skills, she and her husband Perri immediately decided on an ABA
treatment program.


Although the scientifically validated therapy would be expensive - as much as three times the province's $20,000 annual subsidy for autistic children up to age six, after which it drops to $6,000 - it was their son's best hope for improvement. But when they tried to assemble a behaviour interventionist team to implement the program, Domm said they quickly found out how difficult that was.


"Even though we had a pool of Capilano students to draw from and train, the turnover rate is quite high," she said, "and we went through 14 therapists in two years." Autism is now the most common childhood developmental or neurological disorder in the country, affecting more than 4,300 children in B.C."But we have only a handful of board certified behaviour analysts," said Domm, "and they have lengthy waiting lists." So, she thought, why not offer an ABA course at Capilano with a practical component so families can count on steady pool of motivated students to work with their kids.


She pursued the idea with fellow Capilano psychologist Cara Zaskow and with her help, and input from autism families and professionals, the course has mushroomed into Canada's first ABA bachelor's degree program. Scheduled to begin next January, it will operate as a cohort program, accepting about 20 students with associate degrees in psychology to train for work with autism cases, among others.


"They'll be qualified to become board certified associate behavior analysts, earning at least $40 an hour to start," said Domm. "Or they can pursue a master's degree in ABA, special education or psychology." Thanks in large part to his therapy, Levi, a high-functioning autistic, is now an attentive, affectionate boy. He attends a mainstream Grade 2 class and receives 12 hours a week of academic and behavioral therapy at home. "I still worry about his future," Domm said, "but what mother doesn't? And I'm pleased that Capilano will soon be producing the professionals the autism community so desperately needs so other families won't be left in the lurch like we were."

autism

Autism, De Novo Genetic Mutation and Environmental Mutagens

The genetic bases of autism dominated autism news the previous week with the publication of the Chromosome 16p11.2 study in the New England Journal of Medicine and three CNTNAP2 gene study reports, Alarcón et al., Arking et al.,and Bakkaloglu et al., in the American Journal of Human Genetics respectively. Various ideological, literary, anthropological and cultural perspectives on autism make for interesting chat, and occasionally heated debate, but add little to our real understanding of autism. It is very encouraging to see our science based understanding of autism growing in such dramatic fashion.

As a lay person heavily dependent upon credible interpretations of the science though I was struck by the references to genetic mutations and de novo genetic mutations. I tried to Google my way to a basic understanding of some of these concepts and some of the references that I found helpful follow:

The Genetics Home Reference web page provides some basic helpful information that indicates that environmental factors can play a role in some genetic mutations:

Gene mutations occur in two ways: they can be inherited from a parent or acquired during a person’s lifetime. Mutations that are passed from parent to child are called hereditary mutations or germline mutations (because they are present in the egg and sperm cells, which are also called germ cells). This type of mutation is present throughout a person’s life in virtually every cell in the body.

Mutations that occur only in an egg or sperm cell, or those that occur just after fertilization, are called new (de novo) mutations. De novo mutations may explain genetic disorders in which an affected child has a mutation in every cell, but has no family history of the disorder.

Acquired (or somatic) mutations occur in the DNA of individual cells at some time during a person’s life. These changes can be caused by environmental factors such as ultraviolet radiation from the sun, or can occur if a mistake is made as DNA copies itself during cell division. Acquired mutations in somatic cells (cells other than sperm and egg cells) cannot be passed on to the next generation.

At Learn. Genetics page of the Genetic Science Learning Center of the University of Utah an explanation is provided for how mutations occur:

There are two ways in which DNA can become mutated:

1. Mutations can be inherited. This means that if a parent has a mutation in his or her DNA, then the mutation is passed on to his or her children.
2. Mutations can be acquired. This happens when environmental agents damage DNA, or when mistakes occur when a cell copies its DNA prior to cell division.

The Learn. Genetics site indicates that environmental agents that can damage DNA include ultra violet radiation and certain chemicals. On the What Causes DNA Mutations page of the site the Center provides diagrams and further explanation of both the environmentally caused mutation process and the cell copying mistake process.

1. DNA damage from environmental agents

Modifying nucleotide bases

Ultraviolet light, nuclear radiation, and certain chemicals can damage DNA by altering nucleotide bases so that they look like other nucleotide bases.

When the DNA strands are separated and copied, the altered base will pair with an incorrect base and cause a mutation. In the example below a "modified" G now pairs with T, instead of forming a normal pair with C.

Breaking the phosphate backbone

Environmental agents such as nuclear radiation can damage DNA by breaking the bonds between oxygens (O) and phosphate groups (P).

Breaking the phosphate backbone of DNA within a gene creates a mutated form of the gene. It is possible that the mutated gene will produce a protein that functions differently.

Cells with broken DNA will attempt to fix the broken ends by joining these free ends to other pieces of DNA within the cell. This creates a type of mutation called "translocation." If a translocation breakpoint occurs within or near a gene, that gene's function may be affected.

In Mutation, Mutagens, and DNA Repair Beth A. Montelone, Ph. D., Division of Biology, Kansas State University, defined mutagen as "a natural or human-made agent (physical or chemical) which can alter the structure or sequence of DNA." In addition to radiation Dr. Montelone describes four categories of chemical mutagens and provides examples of some of the better known chemical mutagens in each category:

1. Base analogs

These chemicals structurally resemble purines and pyrimidines and may be incorporated into DNA in place of the normal bases during DNA replication:

• bromouracil (BU)--artificially created compound extensively used in research. Resembles thymine (has Br atom instead of methyl group) and will be incorporated into DNA and pair with A like thymine. It has a higher likelihood for tautomerization to the enol form (BU*)

• aminopurine --adenine analog which can pair with T or (less well) with C; causes A:T to G:C or G:C to A:T transitions. Base analogs cause transitions, as do spontaneous tautomerization events.

2. Chemicals which alter structure and pairing properties of bases

There are many such mutagens; some well-known examples are:

• nitrous acid--formed by digestion of nitrites (preservatives) in foods. It causes C to U, meC to T, and A to hypoxanthine deaminations. [See above for the consequences of the first two events; hypoxanthine in DNA pairs with C and causes transitions. Deamination by nitrous acid, like spontaneous deamination, causes transitions.
• nitrosoguanidine, methyl methanesulfonate, ethyl methanesulfonate--chemical mutagens that react with bases and add methyl or ethyl groups. Depending on the affected atom, the alkylated base may then degrade to yield a baseless site, which is mutagenic and recombinogenic, or mispair to result in mutations upon DNA replication.

3. Intercalating agents

acridine orange, proflavin, ethidium bromide (used in labs as dyes and mutagens)

All are flat, multiple ring molecules which interact with bases of DNA and insert between them. This insertion causes a "stretching" of the DNA duplex and the DNA polymerase is "fooled" into inserting an extra base opposite an intercalated molecule. The result is that intercalating agents cause frameshifts.

4. Agents altering DNA structure

We are using this as a "catch-all" category which includes a variety of different kinds of agents. These may be:

• --large molecules which bind to bases in DNA and cause them to be noncoding--we refer to these as "bulky" lesions (eg. NAAAF)
• --agents causing intra- and inter-strand crosslinks (eg. psoralens--found in some vegetables and used in treatments of some skin conditions)
• --chemicals causing DNA strand breaks (eg. peroxides)

What these agents have in common is that they probably cause mutations not directly but by induction of mutagenic repair processes .

autism

"House Autistic" Or More Neurodiversity Trash Talk

One of the unspoken truths about the neurodiversity "movement" is the extent to which ND adherents engage in Trash Talk in the form of offensive terminology like "curebie" "idiot" and even "retard" when referring to people whose views challenge their ND ideology.

Yesterday I posted about an autistic blogger named Jonathan Mitchell who wrote an article on his site urging other autistic persons and persons with an interest in autism to reject ND ideology to Just Say No to neurodiversity. I received a heated, and somewhat confused, response from someone who identified himself as "Robert Montgomery" although he provided no email address, link or url to confirm that name and I learned for the first time that autistic persons who disagree with the ND ideology are dismissed by neurodiversity adherents as "house autistics". They are also, apparently, dismissed as being liars about their past.

This particular "Robert Montgomery" seemed very upset that I had posted a comment about an autistic individual, Jonathan Mitchell, who dared reject the neurodiversity ideology. In fact he was so upset he posted his comment in response to the wrong article, posting incorrectly under my CNTNAP2 Gene And The Unravelling Of Autism Spectrum Disorders article. This alleged Robert Montgomery accuses Mr Mitchell of being a "house" autistic and declares that "sadly, like most house autistics, they lie about their past."

Show Original Post Collapse comments

Robert Montgomery said...

There's one serious flaw to Jonathan's argument. Not many special education opportunities were available in the 1960's. I think Jonathan needs to change his story. The majority of students with recognized disabilities, and I would presume feces smearing would have been considered a disability even in the 1960's, were in segregated institutions. The IDEA wasn't passed into law until Jonathan would have been 22 years of age. Nice try though Jonathan.

This is from the Georgetown University Press:

As the United States entered the 1960s, American public schools faced challenges in several areas. Discussions regarding social and economic inequality led to intense national soul-searching, with the sweeping implications of the Supreme Court’s 1954 Brown vs. Board of Education of Topeka decision affecting developments in law, politics, social policy, and certainly education. The federal government under President John F. Kennedy determined that much greater involvement on its part was necessary to stimulate action and ensure the enforcement of law, the protection of civil rights for all Americans, and the fulfillment of the promise of public schooling. Among educational professionals, questions about the rigor and direction of curriculum and instruction dominated educational discourse after the launch of the Sputnik satellite by the Soviet Union in 1957, leading to reform efforts in the teaching of most subject areas, science and mathematics. As deliberations about the appropriate purposes, character, and methodology of education intensified, special education found itself linked, directly and indirectly, to changes in the teaching of content and subject matter, the organization and structuring of schools, and the classification and categorization of students.

From 1960 through 1968, special education would continue its dramatic evolution, encountering significant challenges to its assumptions, structures, and operations. It maintained its remarkable expansion in terms of its number of programs offered and students served, even while special educators constantly maintained that an unacceptably low percentage of students who needed special education services were actually receiving them. The introduction and solidification of learning disabilities as a recognized category of disability rearranged and expanded the identified population of children with disabilities; the linking of disability with poverty, cultural deprivation, and minority status substantially altered views on the etiology and diagnosis of disability, especially in the area of mental retardation, shifting the ways in which discussions of special education services and purposes were framed. The number of people with disabilities housed in residential institutions kept increasing, leading to severely overcrowded conditions and serious charges that care and treatment of the residents all too frequently was cruel and inhumane. Such developments took place in the context of rapidly expanding federal involvement as well as heated debate about the propriety of segregated schools and settings, including those for students with disabilities.

Harold, really, a cursory knowledge of the disability movement in the US would have tipped you off that this man could have never spent 8 years in special education.

But like John Best, your not really interested in facts and I my guess would be that this comment too will never be posted on your website. That's ok, because I'm taking screen shots of them to show the world that your a dishonest person not interested in truth.

I'm sure you think your clever because you found a "house" autistic who supports your hatred of autism and autistic people who disagree with you. But sadly, like most house autistics, they lie about their past.

7:33 PM

I personally don't know what Mr. Mitchell meant by his reference to Special Education or whether, as Mr. Montgomery contends. no such "Special Education" could have existed at the time Mr. Mitchell would have attended school but I assume that Mr. Mitchell is telling the truth about a non-controversial matter of that nature. Obviously Mr. Montgomery, at least in whatever state of mind he was in at the time he posted the above note, is very quick to jump to conclusions about other peoples' honesty and character.

I have long known of, and been on the receiving end of, the heated nature of many internet autism debates. Mr. Montgomery's post though seems beyond the pale even by those standards. Hopefully his views of Mr. Mitchell and any other autistic person who presume to disagree with Neurodiversity doctrine are not shared by other Neurodiversity adherents.

autism

Autism and Haircuts, Conor Visits Linda at the Cutter's Edge

Conor, earlier this week, before his haircut

Conor, after his haircut, yesterday

I have commented about haircuts and autism, or at least haircuts and Conor who has Autism Disorder, in the past. He is very sensitive to sounds and sights and to being in a confined space with other people very physically close to him, occupying his space. Years ago a haircut meant Dad holding Conor while the barber cut his hair with Conor's hands, and sometimes his teeth, digging into Dad's shoulder. With time simple desensitization has taken some of the ordeal out of a haircut for Conor - and Dad. This year at school Conor's UNB-CEL Autism Intervention Trained Teacher Aides have practiced with Conor at school, putting him in a similar chair with a cloth over him, imitating a visit to the barber.

Over the years we have also taken Conor to the same person to get his haircuts - Linda, at the Cutter's Edge, in the Brookside Mall in Fredericton. Conor knows Linda and that makes it easier in itself. But Linda also has the skills, the personality, the experience working with Conor, and the willingness to work with him. A haircut for Conor is an event that is always filled with some anxiety and when it goes well, when it goes smoothly, as it did once again yesterday, we very much appreciate it.

Thank you Linda.

autism

Autistic Blogger Jonathan Mitchell Says NO To Neurodiversity

One of my major complaints about the Neurodiversity movement is the tendency of some high profile autistic media personalities to speak on behalf of all autistic persons, including my son who has limited understanding of language, and limited ability to communicate. The "ND" autistic media stars tend to be anti-cure, anti-treatment with respect to autism. They do not like people discussing any of the negative realities of autism, and don't like autism to be associated in any way with intellectual disability. But not all autistic persons share the ND views. Jonathan Mitchell is an autistic blogger whose views differ from the ND club and encourages others to say NO to Neurodiversity in NEURODIVERSITY: JUST SAY NO on his blog site Jonathan Mitchell. I have extracted some of Mr. Mitchell's comments but I encourage people to visit his site and read it in its entirety:

A number of high functioning autistics claim that there is a consensus among all autistic persons that finding a cure for autism would be a horrible thing. Autism is a part of who they are and to take away the autism is to take away the person. They go further to claim that autism is not really a disorder but just a different form of brain wiring--some call this philosophy "neurodiversity".

Some of them do acknowledge that autism is a disability. However, there is a distinction between a medical model of disability-wherein the person has a disease state and the social model of disability--the disabled person would not be at a disadvantage if society made accommdoations for them.

I am a diagnosed autistic, nonverbal, feces smearing at age 3, 8 year veteran of special education yet I do not share this view. I long for a cure for autism though a cure at age 52 is not the same as at age 3, even in the unlikely event of a cure being found in my lifetime. Somehow I got missed when they took the census. So they are incorrect about all autistics.

Is this a viable philosophy that will help autistics and their families? Is there a consensus for this philosophy among most autistic persons? Are the people who espouse this philosophy typical of autistic people in general? I would like to address these questions in this journal entry.

...

I hope that if any person touched by autism happens to read this and someone from the neurodiverse crowd gives them a homily trying to convince them of their way of thinking that they will, in the words of Nancy Reagan, just say no.

autism

CNTNAP2 Gene And The Unravelling Of Autism Spectrum Disorders

If anyone doubted that we are living in the era of the Autism Knowledge Revolution they should doubt no longer. The January 10 2008 edition of the American Journal of Human Genetics includes reports of three studies which separately validate the March 2006 study led by Dr. Dietrich A. Stephan, that identified a gene called CNTNAP2 which, when mutated, suggested a predisposition to autism. In Unravelling Autism Dr. Stephan comments on the three studies and states:

In this issue of AJHG, Alarcón et al.,¹ Arking et al.,² and Bakkaloglu et al.³ identify a series of functional variants in the CNTNAP2 gene that unequivocally implicate this gene as causing Type 1 autism in the general population. ...... The modern technologies and strategies derived from the Human Genome Project, coupled with the elegant sample banking, phenotyping, and data dissemination resources of groups like AGRE, are resulting, finally, in the unraveling of Autism Spectrum Disorder.

Dr. Stephan offers characteristics of Type 1 autism which many parents will recognize in their autistic children:

The three studies herein^{1, 2, 3} have moderate sample overlap and use different strategies to narrow the phenotype of the ASD cohorts to relative homogeneity before performing genotyping/resequencing across the CNTNAP2 gene locus. Nevertheless, the three studies together identify a set of common and rare variants that provide unequivocal evidence that the CNTNAP2 gene, when disrupted, leads to a subtype of ASD. This genetic subtype can be clinically characterized by ADOS/ADI-R-defined autism with language deficits and potential gender bias and parent-of-origin effects. Type 1 autism may also be associated with seizures.

The gender bias referred to by Dr. Stephan is the male gender bias associated with autism which sees from 3 to 1 to 4 to 1 male to female ratios amongst persons with autism. On the practical side Dr. Stephan indicates that the CNTNAP2 information might be of assistance in early detection and intervention in the 12 to 24 month period.

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Autism, Chromosome 16p11.2 and De Novo Gene Mutations

As the father of a son with Autism Disorder I have been following closely the incredible explosion of research into the nature, causes and possible treatments for autism, what I describe as the Autism Knowledge Revolution. As someone who is not a scientist or researcher I try to read the original journal articles publishing these findings but usually have to resort to other sources to translate the language and concepts downward to my own level of understanding which is basically plain English.

It is exciting to see new reports like the Association between Microdeletion and Microduplication at 16p11.2 and Autism published in the New England Journal of Medicine which identifies a Chromosome involved in 1% of autism cases. I try to read and understand the original articles but I also like to consult layman's interpretations offered by credible sources for help and certainty that I truly understand the nature of the research and the possible implications of any findings. I also check other autism bloggers but do so with the knowledge that autism bloggers have a tendency to try and cram any new studies into their own ideological take on the major autism fault lines such as the genetics versus environment causal debates.


My own view for many years based on little more than the "twins" studies and my own son's pre and post natal history was that genetics was probably more significant than environment in causing autism. But I never ruled out environmental possibilities and it is not clear to me that a truly scientific, or at least a truly open minded approach ever rules any possible factor, or set of factors, out on an absolute basis. It is with that mindset that I have read the Chromosome 16p11.2 report and various news commentaries on the report and its findings.


Any finding of a genetic basis to autism gives many of us an automatic knee-jerk thought that autism is an inherited condition, a simple "like father like son", causal relationship. But as I read the article, with my layman's limitations, I was struck by the reference to "de novo mutations" and it was difficult for me to see a simple direct inheritance relationship in what the authors were saying, although admittedly I might have misunderstood:

The abstract published in the NEJM states:

Methods As a first component of a genomewide association study of families from the Autism Genetic Resource Exchange (AGRE), we used two novel algorithms to search for recurrent copy-number variations in genotype data from 751 multiplex families with autism. Specific recurrent de novo events were further evaluated in clinical-testing data from Children's Hospital Boston and in a large population study in Iceland.

Results Among the AGRE families, we observed five instances of a de novo deletion of 593 kb on chromosome 16p11.2. Using comparative genomic hybridization, we observed the identical deletion in 5 of 512 children referred to Children's Hospital Boston for developmental delay, mental retardation, or suspected autism spectrum disorder, as well as in 3 of 299 persons with autism in an Icelandic population; the deletion was also carried by 2 of 18,834 unscreened Icelandic control subjects. The reciprocal duplication of this region occurred in 7 affected persons in AGRE families and 4 of the 512 children from Children's Hospital Boston. The duplication also appeared to be a high-penetrance risk factor.

Conclusions We have identified a novel, recurrent microdeletion and a reciprocal microduplication that carry substantial susceptibility to autism and appear to account for approximately 1% of cases. We did not identify other regions with similar aggregations of large de novo mutations.

As a practicing lawyer I am familiar, in the legal context, with the expression "de novo". In some Canadian legal processes an appeal can be done by way of "trial de novo", essentially a new trial before a higher tribunal, rather than an appeal of specific issues from the original trial. I wasn't sure what "de novo" meant in describing genes.

In What is a gene mutation and how do mutations occur? the NIMH states:

A gene mutation is a permanent change in the DNA sequence that makes up a gene. Mutations range in size from a single DNA building block (DNA base) to a large segment of a chromosome.

Gene mutations occur in two ways: they can be inherited from a parent or acquired during a person’s lifetime. Mutations that are passed from parent to child are called hereditary mutations or germline mutations (because they are present in the egg and sperm cells, which are also called germ cells). This type of mutation is present throughout a person’s life in virtually every cell in the body.

Mutations that occur only in an egg or sperm cell, or those that occur just after fertilization, are called new (de novo) mutations. De novo mutations may explain genetic disorders in which an affected child has a mutation in every cell, but has no family history of the disorder.

Acquired (or somatic) mutations occur in the DNA of individual cells at some time during a person’s life. These changes can be caused by environmental factors such as ultraviolet radiation from the sun, or can occur if a mistake is made as DNA copies itself during cell division. Acquired mutations in somatic cells (cells other than sperm and egg cells) cannot be passed on to the next generation.

Every step forward in understanding autism is in itself a positive development. And popular comment on the Chromosome 16p11.2 findings argue that the findings may help lead toward development of drugs which could be aimed at treating or curing some cases of autism. I hope so.

In the meantime though I also remain curious about the nature of the de novo gene muations involved and the extent to which they are caused by environmental factors.

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Autism and Personality - Conor Relaxes With Dad

Autism is often discussed in terms of personality and in terms of affection or lack thereof. In reading descriptions of autism a person might think that all autistic persons have the same personality. Someone reaching that conclusion would be mistaken. I have met many autistic children in the course of my autism advocacy and membership in autism organizations here in New Brunswick each with their own distinct personality. I have talked about the negative realities of autism on this site because I do not want to paint a false picture of the challenges my son and our family face because of his autism. I have also tried to show the laughing good natured boy you see in some of the side bar pictures too.

While Conor can be overwhelmed by being in crowds, or by some people getting too close to him, he is in fact very affectionate. He often is very close to those who work with him professionally. And he is very affectionate with Mom and Dad. Here, while I worked on a home computer this afternoon Conor decided he would drape himself all over Dad while eating his Rice Krispie square.

No questions asked; just the most natural place in the world for Conor to be. And Dad did not object.

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DeSoto and Hitlan Rebut (Crush?) Autism Street Critique of Autism-Mercury Data Reanalysis Article

Catherine DeSoto and Robert Hitlan have published an FAQ site Frequently Asked Questions about DeSoto and Hitlan (2007) to answer questions and refute some inaccurate, misleading and even erroneous critiques of their important article published in the November 2007 article of the Journal of Child Neurology Blood levels of mercury are related to diagnosis of autism: A reanalysis of an important data set. Most of the FAQ deals with questions raised on Autism Street in A Tale of Two Tails by bloggers Interverbal and Do'C. The two bloggers published a critical review of he DeSoto and Hitlan paper on Autism Street. The Desoto-Hitlan FAQ site exposes many information gaps in the Interval-Do'C critique.

DeSoto and Hitlan responded very politely to the critique and the FAQ site is important reading for anyone with a serious interest in autism, although it will undoubtedly be difficult for many of the 87 Autism Street cheerleaders who published their gloating sarcastic commentaries to read with an open mind. Interverbal posted an interesting comment:

Comment by Interverbal — 18 November, 2007 @ 4:06 pm At this time I don’t think we have any plans to write a letter to the editor. Speaking only for myself, I am anxious to see how Ip et al respond to DeSoto & Hitlan.

As one who does not share Interval's and Do'C's knowledge of statistical methodologies I might have been confused in saying that I too look forward to any reply by Ip et al. As I read DeSoto and Hitlan's FAQ it appears to me that they are saying that Ip et al already acknowledged their errors by the time the DeSoto article was published in November:


Q. Why did you take the time to write about a mistake that had already been corrected by the authors?

A. We didn’t. The mistake had not been found until we found it. We are the correctors. Again, some blog sites have unfortunately served to confuse this issue.

Q. What was really so wrong with the Ip 2004 article?


A. Based on their retraction which appeared in the same issue issue as our article, the mean for the autistic group was wrong, the standard deviations were wrong for both groups, the stated statistical significance in 2004 was way off. The means as they reported them in 2004 result in a significant t test by any standard…meaning that the autistic group had significantly more mercury in their blood than the control group. This is indisputable (or should be). It would not matter if a one tailed or a two tailed test was used. All interested parties should use their original data from the 2004 article and calculate the t value and p value (or put the numbers into an online t test calculator-- see "how can I check the original numbers myself?"). Their original stated level of statistical probability was off by almost 10 fold.


The data set they provided in 2007 misses conventional significance by a hair using their original statistical technique. Some blog sites such as Age of Autism have also pointed out that Ip et al overstated their findings in 2004. This means that the conclusions they made reached way beyond their findings. This is less serious compared to flubbing your stats, but I will note it for completeness.


If I am right in my reading of the DeSoto and Hitlan FAQ site commentary then I assume that Interval and Do'C will publish a retraction of their analysis on Autism Street. I will hold my breath until then. No, no ... on second thought ... I better not. I don't know if Interval and Do'C have the integrity to admit error. My lungs could explode, or I could implode, waiting for the retraction.

Too bad Interval didn't write that letter to the editor.

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Autism and ABA - Conor Is Eager To Get Back to School and ... ABA

Today was the first day back to school after Christmas vacation in our school district. For Conor that meant return to his Teacher Aides, his structure and routine and ... his Applied Behavior Analysis, (Discrete Trial Training version). And he couldn't wait to get back to school this morning. Conor was dressed, had his back pack in hand, and was on the step eager to get to school ... a good 20 minutes before it was time to leave.

There are some very high functioning autistic adults who claim that ABA violates the human rights of autistic persons and deprives them of their personalities. Some of those who make the claim are very intelligent and articulate adults who were not even diagnosed as autistic until their late teen and adult years; some had no involvement with ABA. These anti-ABA activists, by virtue of their excellent communication skills, do not share the same realities of life as Conor. Conor is echolalic, with limited understanding and command of language, without ABA we would have had no effective way to communicate with and teach him to adapt to the world, to the best of his ability, as we all must do.

The anti-ABA activists do not speak for Conor. He speaks for himself when he waits eagerly for his ABA therapist to arrive at home. Conor speaks for himself when he dresses for school 20-30 minutes early; eager to get back to school to his Teacher Aides, his routines ... and his ABA (DTT) based education.

ABA is a violation of Conor's human rights? A theft of his personality?

Conor's happy face says otherwise.

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Conor Counting and Stimming

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Autism Speaks Tackles Autism Crisis in South Florida Mar 24 - 28

Donald Trump, Bob Wright, Suzanne Wright, Melania Trump
Photo: TOWN-CRIER Online

Autism Speaks is continuing to show outstanding leadership in tackling the Autism Crisis in the US and around the world. Co-founders Bob and Suzanne Wright have joined with Donald and Melania Trump, local parents and autism advocates in organizing a South Florida autism awareness and fundraising initiative to take place during the last week in March. Autism Speaks Week, March 24-30, will include a number of activities including a Television News Series on the autism crisis of escalating rates of autism diagnoses, March 24 to 28 on NBC stations in the area, an on-line auction, ING Direct Ride Now South Florida motorcycle ride, Saturday, March 29, a telethon and broadcast of 'Autism Every Day', and a concert for Autism Speaks, headlined by Lionel Ritchie, Sunday March 20.

As stated by Bob and Suzanne Wright in TOWN-CRIER Online:

“Autism is a national health crisis that is affecting families in every corner of this country, from Florida to Alaska,” Bob Wright said. “Autism Speaks Week will shine a spotlight on the struggles of South Florida families and inform people about what they can do to improve the lives of individuals with autism in their community.” “Our hope is that this series of events will increase the level of understanding and acceptance,” Suzanne Wright added. “The money we raise will help Autism Speaks fund autism research and support community organizations here in South Florida and across the United States that provide critical services to children and adults with autism.”

The ability of Autism Speaks to generate public awareness of autism, raise funds for autism research is amazing. And now Autism Speaks is turning its considerable abilities to assisting local autism support organizations. Not content to engage in endless peurile debates over the appropriate metaphors to use in describing autism or whether to say "autistic person" or "person with autism" Autism Speaks is actually doing something constructive, in a big way, in addressing the Autism Crisis.

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Study Shows Antipsychotic Drugs Offer No Benefit in Curbing Aggression

In Drugs Offer No Benefit in Curbing Aggression, Study Finds the New York Times reports the results of a study to be published today in the Lancet which tracked intellectually handicapped adults over more than a month of treatment. There was a 79 per cent reduction in aggressive behavior among those taking placebo pills. The group taking antipsychotic drugs saw a 65 percent or less reduction in aggressive behavior. The better results of the placebo group was attributed by one of the lead researchers to the extra attention the group members received during the study.

In the study, Dr. Peter J. Tyrer, a professor of psychiatry at Imperial College London, led a research team who assigned 86 people from ages 18 to 65 to one of three groups: one that received Risperdal; one that received another antipsychotic, the generic form of Haldol; and one that was given a placebo pill. Caregivers tracked the participants’ behavior. Many people with very low I.Q.’s are quick to anger and lash out at others, bang their heads or fists into the wall in frustration, or singe the air with obscenities when annoyed.

After a month, people in all three groups had settled down, losing their temper less often and causing less damage when they did. Yet unexpectedly, those in the placebo group improved the most, significantly more so than those on medication.

In an interview, Dr. Tyrer said there was no reason to believe that any other antipsychotic drug used for aggression, like Zyprexa from Eli Lilly or Seroquel from AstraZeneca, would be more effective. Being in the study, with all the extra attention it brought, was itself what apparently made the difference, he said.

The NYT notes that the study sharply challenges standard practices in mental health clinics and nursing homes around the world.

Don't be surprised if researchers for the major pharmaceutical companies come out with studies soon to contradict or minimize the Tyer group's findings. Risperdal is used to treat aggression in people with a variety of mental health conditions including autism.

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Offensive Autism Language at "Aspies for Freedom"

On December 29 I commented on the offensive language and hypocrisy demonstrated by neurodiversity blogger Do'C at Autism Street in Offensive Language On Autism Street where he referred to Donald Trump and Jenny McCarthy as "celebrity idiots". Now another neurodiversity blogger fresh off the suppression of the Ransom Notes campaign is insulting Autism Speaks with the following caption: autism speaks are retarded.

The blogger MATTHE was quick to receive chuckles from his fellow "Aspies for Freedom":


autism speaks are retarded Author Message matthe


Posts: 37
Group: Registered
Joined: Dec 2007
Status: Offline
Post: #1 autism speaks are retarded
any comments? Today 01:14 PM Lestat


Posts: 502
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Joined: Apr 2006
Status: Online
Post: #2 RE: autism speaks are retarded
No need for comment, you are preaching to the choir here mate The light blinds
So behold darkness as our new light
In our darkness we can see
So with others blindness
We take flight. Today 03:28 PM flardox


Posts: 767
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Status: Offline
Post: #3 RE: autism speaks are retarded
Lestat Wrote:No need for comment, you are preaching to the choir here mate


I like the comment!


short and simple yet profound
I'm watching always watching..... Today 08:03 PM shamshir1218

Posts: 233
Group: Registered
Joined: Aug 2007
Status: Online
Post: #4 RE: autism speaks are retarded
*chuckles at the thread*

It is funny because it is true!!! This person's views are not representative (Gareth)
Please do not remove this notice
The way of the warrior is my path.Apparently mocking those with intellectual disabilities, by using terms used to describe them in the past as insults, is OK with the neurodiversity blogging crowd. Don't hold your breath waiting for Ari Ne'eman , Estee Klar-Wolfond, and Kristina Chew, all of whom condemned the Ransom Notes language, to express their outrage at their fellow neurodiversity bloggers derogatory mocking of the intellectually impaired. Pomposity they can do. Sincerity, genuine concern for the intellectually disabled; even those who are autistic? Not so good.

autism