Well Informed Autism Commentary You Should Read: Autism, Empathy and Martin Luther King, Jr. by Lin Wessels

If you are searching the internet looking for commentary about autism by someone who has has real experience with the subject matter on which to base her insights I would recommend you read Autism, Empathy and Martin Luther King, Jr. by Lin Wessels. Lin takes a  shot at some of the many autism myths perpetuated in the media and provides some parental perspective on several common autism myths including the empathy myth which she refutes with her own experiences with her son:

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 The moment I stepped foot in the room, I knew something was wrong. There he stood; such a sad, long face with tears ready to flow at any given moment. All I need do was ask him what was wrong and flow they did. He not only cried; he sobbed. Big, heartfelt sobs ensued. As is common in autism, his communication is somewhat lacking, let alone the sobbing. We were finally able to piece it together; the second graders had watched, “My Friend Martin,” and he died. My son was heartbroken that anyone would treat others so poorly. He was further saddened that someone evil would dare to kill such a fine person as Martin Luther King, Jr. He was sincerely grief stricken.

I immediately recalled a time when he was but a toddler, not able yet to speak. We didn’t yet know he had autism. Perhaps, he’d not yet been stricken by it. He was watching Shrek. As the Gingerbread Man’s leg was being broken at the order of Lord Farkwad, our sensitive Sam wept. My son does now and has always boasted empathy. 

Regardless of what the alleged experts say I accept completely Lin Wessel's evidence, based on direct observation, based on her experience with her child. I have seen empathy in Conor although I can not point to any incidents as dramatic as Ms Wessel has done. Read her comments at AutismOne if you want to gain some autism insights from some one with actual experience with autism ... from a caring parent.

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Conor Stays Warm in His New Winter Hat

Conor tried on Dad's new winter hat and decided it felt real warm and cozy. Did I say Dad's new hat? It looks like the hat has found a new owner.

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Autism Outreach Group Excludes Low Functioning, Severely Autistic Persons

A group of persons with autism spectrum disorders has been formed in the Tri-Cities Washington area but membership is for persons with High Functioning Autism and Aspergers disorders. Low functioning, severely autistic persons are not included in the group. In  New group forms for high-functioning autistic Tri-Citians  The News Tribune reports on the founding of the  Three Rivers Autistic Outreach a social group for persons with High Functioning Autism and Aspergers:

""   Ellen, whose autistic diagnosis is pervasive atypical development disorder, is a high school and college graduate and trained as a paralegal.

Meier learned of her Asperger's condition a few years ago when her husband suggested she be tested for autism.

But when Meier and Ellen became acquainted after meeting at an autism picnic, the social connection clicked.

"It's a very isolating condition," said Ellen. But once people with autism who are high-functioning link up socially, their lives have a new dimension.

"We have a unique understanding, we laugh together. We don't notice the twitches. We can just be ourselves," she said.

"Without having people look at you funny," Peters added.

Another reason Peters formed the peer group is that plenty of support can be found for young autistic children, but there isn't much for autistic young adults, particularly high-functioning people.

"The high end (of autism) gets ignored. You can't find others so easily," Peters said.

I do not intend this commentary as a criticism of the members of this group with High Functioning Autism and Aspergers Disorder. To the contrary,  I applaud their common sense and honesty in describing themselves accurately as a group for High Functioning members of the autism spectrum.

I wish the same accuracy, common sense and honesty would be displayed by the brilliant members of the ASAN Board of Directors all of whom are persons with High Functioning Autism and Aspergers.  In the same vein I wish the high powered mainstream media  that dotes on Obama disability appointee Ari Ne'eman would understand that while  Mr. Ne'eman would undoubtedly fit in at gatherings of the Three Rivers Autistic Outreach my son with severe Autistic Disorder  will never be able to function in such a setting.

The DSM re-designers would be well advised to consider a clear demarcation in the DSM V between those with low functioning, severe Autistic Disorder, including the 75-80% who are cognitively impaired, on one side and High Functioning Autism and Aspergers Disorder on the other side.  It is a divide acknowledged openly and honestly by the Three Rivers Autistic Outreach group. It is a divide which exists on, but is not openly acknowledged by .the ASAN "Autistic Self Advocacy Network"  Board of Directors.

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Autism Cure? It's About Functioning Not Conformity

One of the blog posts on this site received a number of visits from the Mother of Shrek Site, where Casdok, the author, and mother of a non verbal autistic young man articulated her views on autism acceptance in the context of what she described as a hypothetical autism cure.

In the course of that commentary Caskok asked what is meant by curing autism but she asked the question using the language of the Neurodiversity ideology to which she subscribes, which views autism not as a medical disorder but simply as a "difference". I posted a comment on that site although I don't know, as I  post this comment, whether it will pass moderation so I have reproduced it below in italics following the question asked by the author which I have also posted and  highlighted in blue.

The wording of the question posed by the site's author obviously provides its own answer. The concept of cure as providing the person cured with the ability to understand the world, to communicate better in the world, to function and even function independently in the world is not part of the question as framed by the Neurodiversity embracing Casdok.

Cure is not defined by Casdok in the medical sense of curing the disorder in question, of helping an autistic child or adult overcome the serious cognitive, behavioral and communication deficits that restrict the lives of so many with autistic disorder.  Instead Casdok, consistent with Neurodiversity ideology, asks the question from the perspective of  a social model of disability, as conformity to societal norms:

"""" So what do we really mean by cure? To make someone conform? To be socially acceptable? Assimilated into the collective?! Why can’t society accept everyone is different?"

You have just provided your definition of cure by rhetorical questions framed in the language of those who do not view autism disorders as disorders.

I don't know why you obtained an autism disorder diagnosis for your child. We sought medical attention for our son without knowing anything about autism at that time. We sought attention because he wasn't developing any communication or other functioning skills anywhere near the level of his older brother or any other child we had known.

Cure? Cure would mean providing our son with the same, or similar, ability to understand, function in, even participate in the world that you and I take for granted. Are you, and those who agree with you in the comment section unaware of the autistic Nova Scotia boy who wandered off to be lost forever in a snow storm? Do none of you ever read of the other autistic persons who are lost in traffic or wander away as did Keith Kennedy to be lost in the woods for a week? Are none of you aware of issues of serious, even deadly self injury that affect the severely autistic?

I have been involved with autism advocacy in our home jurisdiction for a decade now. I have visited institutions where severely autistic persons live dependent on the care of others. I have helped some persons with Aspergers in the legal system. I have advocated with other parents, successfully, for pre-school government funded autism interventions and for accommodation of autistic students in our neighborhood schools.

Of course I want my son's disability to be accommodated and I have used  all my abilities to ensure that happens for him and others where I live. But he, and many others with Autistic Disorder, will live their lives within a facility dependent on others with limited understanding of the world.

All cures are hypothetical, until sufficient research is done to find one.

If I could snap my fingers and cure my son, resulting in him having the ability to understand the world more fully, to communicate more fully, to function and survive independently would I do that?

You're darn right I would."

I am not sure how a mother of a non verbal autistic adult comes to subscribe to the social model of disability,  I wish her son well but I hope, for the many parents who continue to try and help their autistic children live the fullest, most rewarding lives possible, and especially for the children themselves, that the research to find cures for autism disorders continues.  If the day that cures, or even significantly beneficial treatments, are found that improve the lives of autistic children and adults then real choices can be made, even if  some would choose not to provide their autistic loved ones with the benefits of such treatments and cures.

Curing autism is not about conformity. It is about giving people disabled by  autism disorders the ability to function more fully and independently in the real world. It is about giving them the same opportunities to experience life that the rest of us, the alleged Neurotypicals, enjoy.

For this parent curing autism is about helping our autistic children enjoy life to the fullest. 

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Neurodiversity Ideologues Strange Silence on Aspergers Man Convicted of Conspiring to Murder his Parents

Neurodiversity bloggers seldom fail to comment on any autism or Aspergers related news event. Invariably they put the Neurodiversity spin on autism disorders as they play out in the real world. It is strange that with news of the conviction of a 25 year old man with Aspergers Disorder,Christopher Monk, not a word has been splashed on the internet by the ND bloggers.

(Photo - Christopher Monk)

Christopher Monk has been convicted by a British court of conspiring to have his parents murdered.   Mr. Monk, despite being 25 years old, lived with his parents who doted on him even while he spent much of his time on the internet.  One of his male friends who he met on line agreed to kill his parents at Monk's urging but failed when they fought back. The parents, notwithstanding their son's hideous crime, remained supportive of him through the trial and sentencing.

There has been no comment from the ND crowd about this case.  If this story were about a crime by parents against a child with autism or Aspergers the Autism Hub would be buzzing with diatribes against the evil parents.  Yet the ND crowd ignores a conviction of a man with Aspergers of conspiracy to murder his parents. The implications of a case such as this for an irrational ideology which sees Aspergers and Autism as just differences not disabilities or disorders is not mentioned because the case itself is not mentioned.  The strange silence of the ND crowd on this case speaks volumes about the irrational ND ideology.

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The Swaggering Bully: Obama Appointee Proud of Aggressively Obstructing Efforts to Help Children with Autism Disorders

Ne'eman, who sometimes uses aggressive language and who has attacked the views of some of the best-known autism-advocacy groups, is untroubled by his critics.

New Jersey News,  he doesn't mince words, and some don't like it 

The New Jersey News, to its credit, gave a relatively balanced, if superficial,  account of  US President Barack Obama's disability nominee Ari Ne'eman's activities as an activist opposing efforts by parent and family driven organizations to help their autistic children. The article notes that the Ne'eman appointment has been controversial and that is true.  The article notes that Ne'eman has opposed efforts of autism advocacy groups and that is true.  The article notes, as set out above, that Mr. Ne'eman uses aggressive  language and that is true.

The article notes that Mr. Ne'eman is not troubled by criticism and that appears to be true.  he does not take into account the opinions of those who disagree with him despite their very real interest in autism disorder issues and despite their different and important experiences with autism disorders.

Those who disagree with President Obama's appointee include families trying to treat and cure their autistic children and adults with autism disorders who, contrary to the aggressive rhetoric of Mr. Ne'eman have stated they would in fact like to be cured of their disorders.   Mr. Ne'eman disregards the challenges faced by those with Autistic Disorder and the families who have struggled to help them.  He is not troubled by their criticism ... or the challenges they face.

The New Jersey News article misses the point when it says that there are some who feel that he is not autistic enough.  Mr. Ne'eman is a very high functioning person with Asperger's Disorder. Yet he purports to speak on behalf of persons with Autistic Disorder many of whom, unlike him, are severely affected by cognitive impairment and severe inability to communicate or understand the world.  Mr. Ne'eman's personal experiences have absolutely nothing in common with those of persons with severe Autistic Disorder.  The young university student has neither personal experience nor professional training to provide him with special insights into Autistic Disorder.  And he has no legal or moral right to object to the efforts of families to help their own children.

Mr. Ne'eman does not view autism disorders as disorders in the true medical sense.  His writings speak of "autism" only as a "social" disability. In   the opinion of President Obama's disability appointee  it is only the failure of society to accommodate persons with "differences" that creates autism disabilities according to President Obama's disability council appointee.

My son has Autistic Disorder and is severely affected by it.  It is a real, not a socially created disability.  If he were left unattended out doors he could  quickly perish in automobile traffic or in a snow storm. That, contrary to Mr. Ne'eman's opinions, is a reflection of my son's Autistic Disorder, a real disability, not one created by society.

Mr. Ne'eman, using his aggressive language, has stated often that "we' don't want to be cured, purporting to speak on behalf of all persons with "autism" including the many with a disorder he does not have ... Autistic Disorder.  The New Jersey News article portrays such rhetoric as honesty and I  agree.  I have no reason to doubt that these are the views of brilliant young university student  with Aspergers Disorder, whose social and communication skills are such that he can hob nob with leading political figures inside the beltway.

They are not the views of many adults with Autistic Disorder and they are not the views of families who are fighting so hard to treat and cure their children with Autistic Disorder.  For many Mr. Ne'eman's s views are controversial as stated by the New Jersey News.  They are also offensive attempts to interfere with their children's rights to be treated and cured and with their families' rights to represent them.

President Obama's disability nominee is proud of his obstructionism, of his attempts to disrupt the work of autism advocacy organizations, and cares not about the views of those who disagree with him. Mr. Ne'eman, the anti-autism cure ideologue with Aspergers, once bullied as a child, has now become the bully. And he is backed by one of the most powerful people in the world ... the President of the United States.  Mr. Ne'eman's future is looking very bright.  The same can not be said of efforts to help autistic children and adults through research.

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Parents Stand by Son with Aspergers Convicted of Conspiring to Murder Them

The Independent UK reports that the parents of Christopher Monks, a 25 year old man with Aspergers Disorder who plotted with an internet friend to kill them stood by their son on sentencing and asked the court to show leniency.

The internet "friend" returned to the Skarnes home after visiting earlier in the day and attacked the parents who fended him off when he attempted to attack the father in his bedroom with a large kitchen knife.

""The pair were convicted despite the fact that Monks’s father, also Christopher, and his wife Elizabeth have fully supported their son, who was adopted at the age of 10 months. They argued that his condition meant he was unable to separate fantasy from reality and that he had never intended to have them murdered.

.......

Sentencing the pair at Preston Crown Court, Mr Justice McCombe said he felt for Monks’s parents. “No court could fail to be moved by the unstinting love they have for their son,” he said. “In their own words in a letter sent to me they say ‘Whatever sentence is passed, we will serve it with him’.”

But he added both men continued to present a “significant” risk of harm to the public. “I recognise that Mr and Mrs Monks find this difficult to accept but the court has a duty to protect the public and ensure that they are not released into the community until that risk is eliminated.”"

The article illustrates just how much many parents of children with Autism Spectrum Disorders love their children no matter how severe the challenges they present.

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A Moving Autism Song and Video

This autism song and video speak volumes. I hope the government of Saskatchewan, and other governments in Canada, the US and the world, will listen.

Autism in Saskatchewan ~ Fall of 09 ~ a Production by A.C. @ Yahoo! Video

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Buried Alive: 3 Big Autism Related News Stories Buried at Christmas

What better time of year to  release autism news that you don't want a lazy, ill informed mainstream media to cover than Christmas with everyone, including journalists, busy with family and with news dominated by stories of old St. Nick?  Not one but three, count em THREE big stories related to autism disorders were released just before the Christmas news freeze. Three that were buried alive in the Christmas news freeze:

1) The CDC autism prevalence figures showing yet another major increase in autism diagnoses and subsequent  IACC head Tom Insel's acknowledgment that environment is a component of autism.  

2) The CDC Fourth National Report on Human Exposure to Environmental Chemicals   that measured 212 dangerous environmental chemicals in human bodies.                                                           

3) Announcement of recent CDC Director Julie Gerberding's New Job as Head of Merck vaccines division.

Former CDC director Dr. Julie Gerberding had stated a study comparing autism rates in existing vaccinated non vaccinated populations could and should be done.  It will be interesting to see if Dr. Julie Gerberding head of Merck's vaccine division agrees.

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Do Study Results Involving High Functioning Autism Subjects Automatically Apply to Persons with Autistic Disorder and Intellectual Disabilities?

Can the results of studies involving subjects with High Functioning Autism automatically be applied to persons with Low Functioning Autism, to the 75-80%  of persons with Autistic Disorder who are cognitively impaired?

In Brain Serotonin and Dopamine Transporter Bindings in Adults With High-Functioning Autism the authors are careful in the title to make it clear that their study subjects were persons with High Functioning Autism.   The  authors also specify that the subjects all have IQ's equal to or greater than 99 and are not representative of a typical sample of adults in the community. Yet the conclusion stated in the abstract is described as pertaining to all persons with "autism":

"Conclusions  The brains of autistic individuals have abnormalities in both serotonin transporter and dopamine transporter binding. The present findings indicate that the gross abnormalities in these neurotransmitter systems may underpin the neurophysiologic mechanism of autism."

If it is important to identify the subjects of a study as having High Functioning Autism, as having average or greater IQ's,  is it valid to generalize those results to other persons with Autism Disorder and intellectual disabilities?

Does it not seem reasonable that there might be different abnormalities involved in the neurological systems that result in some having High Functioning Autism as opposed to those with Autisic Disorder and cognitive impairment?

And why are more studies not done involving subjects with Low Functioning Autism?

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Obama Disability Nominee Doesn't View Autism as a Real Disability, Marginalizes Role of Parents, Caregivers

US President Barack Obama has nominated Ari Ne'eman, a  University student with an apparently very mild form of Aspergers Disorder, to a national disability council.  Since that nomination was made public Mr. Ne'eman has issued statements through friendly bloggers, all too willing to uncritically promote his views,  stating that he DOES see autism as a disability.  Mr. Ne'eman in fact only sees autism disorders as disabilities in the social model sense, in the sense  that society fails to accommodate persons with autism, thereby creating the disability.

The following quote is from a June 2008 NPR  (obviously well before he was nominated by US President Obama) interview:

"As its name suggests, the Autistic Self-Advocacy Network aims to help people with the disorder represent themselves, instead of relying on families and care providers to speak for them. They share a credo with other disability groups: "Nothing about us without us."

Ne'em describes Asperger's and autism as disabilities — but with a twist. "We're disabled by society," he says. "What disables us is, for instance, an education system that's only designed to meet the needs of one kind of student, or societal prejudices which say that autistic people will never be able to live in a community."

[Highlighting added for emphasis - HLD]

Ari Ne'eman, a very high functioning young University student with Aspergers, who is capable of communicating with NPR, the New Yorker, CBC, Newsweek, and Washington politicians, officials and dignitaries,  including the First Lady of the United States, feels entitled to speak authoritatively about Aspergers AND autism, including the 75-80% of persons with Autistic Disorder and cognitive impairments.  He does so on the premise that autism is a disability ONLY because of society's  treatment of people with autism whatever he means by the terms autism and Aspergers.  It is not clear what he in fact means by these terms since he does not endorse the medical model of autism disability.

Apart from not viewing autism disorders as medical disabilities  the  University student with Aspergers feels that his views about Autistic Disorder and other autism  spectrum disorders should be given greater weight in relation to autistic children than the parents and caregivers of those children.  Mr. Ne'eman clearly does not respect the role of parents in representing the interests of their autistic children, particularly those severely autistic children who can not speak for themselves and with whom Mr. Ne'eman has so very little in common. Many parents seek treatment and cure for their autistic children's autism disorder disabilities.

US President Barack Obama is seen by many, including this Canadian, as an outstanding leader on many fronts.  With respect to autism disorders though Mr. Obama has signaled, at best, a lack of understanding of  the real challenges facing the severely autistic ... and the family members who care for them ... by nominating a  University student who does not understand the seriousness of the challenges faced by those with actual Autistic Disorder and their families and caregivers.  President Obama has nominated as a disability representative a person who, at best, views autism as a "social",or societally caused,  not a real disability, who opposes the rights of autistic children to be cured of their autism, and who marginalizes  the role, the right and the duty of parents and caregivers in advancing their autistic children's best interests.

At least  Mr. Ne'eman will be  happy. His presidential endorsement will garner him more interviews with NPR, the New Yorker, CBC, Newsweek, TIME etc., etc., etc., etc., etc., etc.  Meanwhile parents and caregivers will continue to struggle, day in and day out, to actually care for and help their autistic children, the  autistic children on whose behalf Mr. Ne'eman claims to speak.

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The Joy of Conor, September - December 2009

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Intellectual Disability Acceptance in the Autism Community

One of the major problems arising from the expansion of the "autism spectrum" concept since 1994, and particularly in the last decade, is the tendency to hide the straight forward, incontestable fact that an over whelming majority, approximately 75-80% of persons with Autistic Disorder are intellectually disabled or cognitively impaired. The concept of "autism" was expanded to include a large group of people who, by definition, do not have intellectual disabilities or cognitive impairment. This expansion resulted in a glossing over of the close association between Autism and Intellectual Disability.

Even an important study like the autism prevalence study recently reported by the CDC expressly obscures the high number of persons with Autistic Disorder who are also intellectually disabled or cognitively impaired by spreading that percentage along the entire spectrum:


"Data show a similar proportion of children with an ASD also had signs of intellectual disability, averaging 44% in 2004 and 41% in 2006."

CDC Counting Autism

The estimated number of persons with Autistic Disorder and Intellectual Disability would be much higher if the CDC figures had excluded persons with Aspergers, none of whom would, by definition, be intellectually disabled or cognitively impaired.  Assuming equal numbers of persons with Autistic Disability and Aspergers Disorder the percentage of persons with Autistic Disorder and ID would be  doubled to roughly 80%.

The 80% figure is consistent with the estimates made by the Canadian Psychological Association in its "Autism Brief to the Standing Senate Committee on Social Affairs, Science and Technology November 9, 2006:


"Symptoms and Impairments:


• Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average. 

Although intellectual disability is so common in persons with Autistic Disorder it is rarely mentioned yet alone discussed in the autism "community" and almost never discussed by the Neurodiversity branch of the autism "community. Neurodiversity bloggers and ideologues tend for the most part to be persons with Aspergers Disorder who themselves are not intellectually disabled,  and by some high functioning persons with autism. While both of these groups like to identify with the term "autism" and like to identify with historical figures who they speculate to have been autistic they do not like to identify with  the many low functioning autistic persons with Intellectual Disability.

It is common to read blog comments about  "awetism" and the "joy of autism", Autistic Disorder itself is a serious disorder which impairs the lives of many who actually live with it but for those who embrace the term autism ... well it is just plain .. cool.  Mozart, Einstein,  Orwell, Van Gogh ... are all speculated to have been autistic. In the most extreme case of such wild speculation that I have read  Jesus Christ  is speculated to have been autistic.  Yet the existence of the 80% of persons with diagnosed Autistic Disorder and Intellectual Disabilities are barely mentioned or acknowledged.

To the contrary, any portrayal of persons with Autistic Disorder as living difficult, challenging lives restricted by their disorder are subject to organized protest campaigns by some very high functioning persons with Aspergers Disorder.  Parents who speak openly about the challenges faced by their low functioning autistic children are maligned as being engaged in pity parties  or parades of woe, usually by the same very high functioning persons, often "aspies" who like to identify with autism. 

The fact is that approximately 80% of persons with Autistic Disorder, the original "auties",  are intellectually disabled or cognitively impaired.

Those who try to suppress this information are suppressing the most basic of human rights, the right of  every person to have their existence acknowledged by the world and to be known by the world as who they really are.

It is time, as we begin a new decade, for "autism" self advocacy organizations and Neurodiversity bloggers alike to start showing respect for the 80% of persons with Autistic Disorder and Intellectual Disability, stop denying their existence and stop being ashamed of the less fortunate members of their alleged autism community.

It is time for persons with High Functioning Autism and Aspergers to start accepting autistic persons with Intellectual Disability and recognize that their Intellectual Disabilities are not just  unrelated coexisting or comorbid conditions. Intellectual Disorders are a very real and integral part of Autistic Disorders. 

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Conor Enjoys Some Snow Fun Before the Big Storm

Conor was happy to get out and enjoy the snow even with the face mask to keep his face good and warm. His timing was good with a big storm expected tonight and tomorrow likely to keep us housebound for the day.

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ASAN Board of Directors Excludes Autistic Persons with Intellectual Disabilities

Approximately 75-80% of persons with Autistic Disorder also have Intellectual Disabilities or cognitive impairment. Yet ASAN, the "Autistic" Self Advocacy Network Board of Directors has no members who represent that large segment of the Autistic Disorder community. The ASAN site profiles its directors all of whom are, by the descriptions on that site, very intelligent and do not have an intellectual disability. It is not clear if persons with Autistic Disorder are represented at all since the Directors are all described as being "on the spectrum":

"Ari Ne'eman ... is currently studying political science in the Sondheim Public Affairs Scholars Program at the University of Maryland-Baltimore County and expects to graduate in May 2010.

Scott Michael Robertson ... has a bachelor's degree in computer science from Rensselaer Polytechnic Institute and a master's degree in human-computer interaction from Carnegie Mellon University. He is currently a Ph.D. Candidate in information sciences and technology at Penn State University's University Park campus.

Dora Raymaker, MS, Systems Science ... currently works on a number of research projects on topics related to healthcare and well-being (through OHSU, http://ohsu.edu), alternative and augmentative communication

Paula Durbin-Westby, B.A.(BA degree info obtained here) .... has testified at numerous IACC meetings

Meg Evans is currently employed in the legal publishing industry. She is a licensed attorney in the State of Ohio and received her law degree from Case Western Reserve University in Cleveland, Ohio. 

Elesia Ashkenazy  ...   possesses a B.A. degree in Speech & Hearing Sciences from Portland State University. She is a licensed Speech-Language Pathology Assistant (SLPA) (BA degee and SLPA license info obtained here)

Melanie Yergeau is a Ph.D. candidate in Rhetoric, Composition, and Literacy at The Ohio State University, where she also teaches courses in writing, digital media, and disability studies."

The ASAN purports to be an Autistic Self Advocacy organization yet it excludes from membership on its Board of Directors persons with Autistic Disorder and Intellectual Disability even though 75-80% of persons with Autistic Disorder are also cognitively impaired.  This is the same organization that rages and rants against Autism Speaks because it claims that its Board is not representative of the autism spectrum.   

None of the specific "autism spectrum" diagnoses of the Directors are disclosed so it is impossible to determine whether some of the Directors are persons with Autistic Disorder diagnoses.  In the case of Melanie Yergeau the ASAN site does not indicate whether she has an "autism spectrum" diagnosis at all.  In the case of Paula Durbin Westby the site indicates that she learned about being on the autism spectrum but there is no indication that she has an actual autism disorder diagnosis.  Meg Evans "was identified as autistic in early childhood". The site bio information does not indicate that she was actually diagnosed as having an autism   disorder. 

The lack of representation of persons with Autistic Disorder and Intellectual Disability on the ASAN Board is important in light of their claim to be an autistic self advocacy network working on behalf of all persons "on the spectrum".  ASAN has organized protests of awareness campaigns that portray the harsher realities of autism disorders and describes autism not as a disability in the medical sense but only in the social sense that a person with an autism disorder is someone who is simply different. It is only society's intolerance that creates the disability.

As the parent of a child with Autistic Disorder with cognitive impairment I can not see this falsehood being perpetrated without speaking out against it.  When I am dead or infirm my son will require the assistance of society in order to live and prosper. He can not survive on his own.  His reality is shared to a greater or lesser extent by the 75-80% of persons with Autistic Disorder who are also intellectually disabled. The brilliant directors of ASAN who are "on the spectrum" do not know him and do not share his challenges. They have absolutely no right to claim to represent persons with Autistic Disorder and intellectual disability to the extent that they do so in the guise of being "self advocates".

ASAN directors oppose curing autism. They declare that "WE" do not want to be cured.  Well and good.  If my son had their intellectual AND social skills I would not want a cure for him either. But he does not  have their abilities and many persons actually diagnosed with Autistic Disorder do not.

ASAN is wrong to oppose research aimed at curing autism. ASAN is an elitist group of high functioning individuals, some of whom may not even have an autism diagnosis, some of whom are known to have Aspergers diagnoses.  They all demonstrate social, behavioral, intellectual and communication abilities not typical of most persons with Autistic Disorder.

ASAN misrepresents itself when it claims to being a "self advocacy"  network for persons on the "autism spectrum".  It is a claim that should be dropped.

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Autism Reality and Hope for the New Decade in New Brunswick

My son Conor, who has Autistic Disorder,  does not live in an autism "community" on the internet. He lives with his family in Fredericton, New Brunswick, Canada.

In expressing my hopes for him  over  the next decade  it is to our local realities, here at home,  that I look first. I hope that the huge gains New Brunswick has made in providing autism specific early intervention and education services are not lost, or diminished, in the face of economic instability that has emerged to shake the world.  And I hope that needed changes can be made to improve the lives of New Brunswick adults with autism and particularly to improve our system of youth and adult residential care.

Some Canadian provinces have already seen the discontinuance of some hard won autism services.  In an overcrowded lifeboat it is easier to first throw the weak and vulnerable into the cold choppy waters than the strong and capable.

Here in New Brunswick the gains that have been made have been under constant pressure from some Education department officials who resent what they have seen as a loss of control by having Teacher Assistants and Resource Teachers trained at the UNB-CEL Autism Intervention Training program. The program has been very favorably reviewed by Dr. Eric Larsson but Education officials have not been happy with a program that arose from external parent driven advocacy and have been determined to regain what they perceive as a loss of Departmental control. To that end they are in the process of detaching themselves from the excellent local training at UNB and have sent Department members to the United States to become trained as  BCBA's who then will be providing training in house to teacher assistants.  Previous versions of this plan did not require the assistants who are trained internally to have any existing qualifications, did not require a time table for completion of training and did not even require testing upon completion of the program or phases of the program.

The union representing teacher assistants also objected to the UNB training requirement and insisted on the right of senior, untrained TA's to work with autistic students in place of the autism trained but junior in seniority TA's.  Under the diluted, in house training proposals  a conflict between seniority and qualifications or ability would not arise. The lack of any real standards meant that every TA who wanted to work with an autistic child would simply have to sign up for the Department training and learn on the job with the autistic student they worked with.

Unfortunately, with the Department having already funded some of its people to acquire their BCBA status in the US for the purpose of "training" TA's in house,  it appears that the quality and integrity of the UNB-CEL Autism Training Program will become a thing of the past. It will be replaced by  the in house training that ensures Education Department officials can exercise tight control over the autism training process, and training expenditures, and will buy peace with the union representing Teacher Assistants. The interests of adults will probably prevail over the interests of autistic students unless a new generation of parent activists arise to challenge this transition.

The area in which progress has been almost non existent in New Brunswick has been adult services and particularly residential services. New Brunswick has placed autistic youths and adults wherever they could at times including on the grounds of a youth correctional facility, the ward of a general hospital and in psychiatric institutions in Saint John and Campbellton.  Those who have lived in the community based residential facilities live in facilities where the staff have no autism specific training.  Efforts to remedy this process have not resulted in any substantial progress over the past few years although there is hope that a system review and community consultation process will begin over the next year.  It will be a huge challenge but one that must be started as our autistic population matures.

To those who like cheerful, feel good predictions for the future my comments will not be well received.  My experience though tells me that if we do not look at the reality of the challenges we face, in this case the autism realities, no real progress will be made.   By all means we must remain optimistic about the possibility for progress but we must undertake to make that progress happen by facing the real challenges realistically and fighting hard to change things for the better.  I say this because I have been involved, with many other parents, in doing exactly that over the past decade and I know that is what it takes.

Happy New Year and Happy New Decade to all.

autism