Autism Parents: Take the Time, Make the Time

The photos that follow show my  walk from my home to my office in beautiful Fredericton, New Brunswick a place I am happy to call home, a place that allows me to take the time I need and want for me and my children. The weather this morning was beautiful and very pleasant for mid December.  With snow coming soon I could not resist the urge to get outdoors, to take the time to walk to my office instead of driving, to take the time for myself.  My office is only a few minutes drive, literally 3-5 minutes from where I live.  A walk is only 15-20 minutes.  

This morning I brought my camera and extended my walk time to and from the office, from Nashwaaksis on Fredericton's north side across the bridge and the St. John River to my office on the south side,  and back, but it was worth it for me.  Everyone needs time for themselves and parents of autistic children, parents of severely autistic children have their specific need for time for themselves. This morning I took some and I am happy that I did. I encourage every autism parent to take time for themselves, to make time for themselves.

During my walk I reflected on how lucky I am to live where I do, here in Fredericton, New Brunswick, Canada. Life is challenging at times as it is everywhere but generally we are very fortunate and I know that and reflected on it as I walked. I also thought of how lucky we were when we moved from Burlington, Ontario back home to Fredericton, New Brunswick in 1997, just one year before Conor was diagnosed with his autistic disorder.  Lucky not because Fredericton is better than Burlington but lucky because the move allowed me to spend much, much more time with both of my sons as they have grown. Lucky because I have been able to dedicate significant portions of my daily life to both my sons and in particular the challenge, as well as the joys, of raising our severely autistic younger son, who is now, in every physical sense, a strapping young man.

When we lived in Burlington we enjoyed the town. It was a very pleasant community in which to live.  Both our sons were born at the Joseph Brant Hospital in Burlington.  But my work at that time took me from the western edge of Burlington to downtown Toronto. Whether by car or by Go Train that meant a 2 1/2 hour commute each way, each day or 5 hours a day, 25 hours a week. Since we returned to Fredericton, when I drive to the office and back it is usually no more than 5-10 MINUTES of commuting each day.  And when I feel like it I can walk and enjoy the time.  

I can not imagine how different life would be for both of our sons, and particularly for our younger son with his severe autism and intellectual disability challenges, if I had not been part of their lives for those 25 hours a week over the last 14 years as they grew from little boys to young men.  I just can't imagine. 

I know I am very lucky and I believe my sons too have been fortunate to have had their Dad with them during these many hours and years of their journey from childhood to manhood. I know not everyone enjoys such good fortune but I encourage every autism parent to take whatever time, to make whatever time, they can for themselves and their children. 

Blaming Autism Parents: The Self Described Science Bloggers

Harriet Hall, MD,  photo by Sgerbic 

There are a number of so called science bloggers on the internet that routinely attack any criticism of, or concerns about,  vaccine safety. Because of the belief by many parents of autistic children that their child's autism is in essence a form of vaccine injury, parents of autistic children are routinely attacked, ridiculed and mocked by self described science bloggers and authors on the internet.  Any scientific study is used as a pretext to attack the "anti-vaccine contingent" code for for autism parents (medical persons who ask questions about vaccines and autism such as Dr. Bernadine Healy are simply ignored) who feel their children's autism resulted from, or was triggered by, vaccine injections.  A blatant example of this type of "science" blogging can be found in the comment by Harriet Hall MD,  Autism and Prenatal Vitamins, on the blog titled Science-Based Medicine .

In Autism and Prenatal Vitamins Dr. Hall, also known as the "SkepDoc" embraces the recent study by Schmidt et al. published in Epidemiology on May 23, 2011, entitled “Prenatal Vitamins, One-carbon Metabolism Gene Variants, and Risk for Autism.”  That study as summarized by Dr. Hall, "found that mothers who didn’t take prenatal vitamins were at greater risk of having an autistic child, and certain genetic markers markedly increased the risk. There was a dose/response relationship: the more prenatal vitamins a woman took, the less likely she would have an autistic child."

The good Doctor does report some weaknesses of the study: "A weakness of their study is that it depends on patient recall long after the fact. Also, it did not attempt to gather any diet information." I am just an ignorant parent of an 15 year old son with autism (and a neutral in the vaccine autism controversy) but it seems to me, as someone who is also a lawyer, that evidence based on memories long after the fact, with no record of other sources of vitamins ... diet ... are not just weaknesses. It seems to me they are serious weaknesses in the study.

It would also be interesting to see the actual questions asked about prenatal vitamin consumption long after the fact  to see if they were in any way "leading" questions.  As a humble, but active, litigation lawyer I have to be conscious of such questions in a courtroom or tribunal proceeding since leading questions contain the answers being sought by the person asking the question. They suggest the "correct" answer to the person being questioned. The risk of such questioning arising in a study based on memories of long ago events which do not account for possible competing factors .... diet ... seem to this humble small town lawyer to be quite substantial.

I describe myself as a neutral in the vaccine autism war. I do not know what caused my son's autistic disorder.  I do accept the prevailing view that autistic disorders likely result from the interaction of genetic and environmental factors. I believe that the well known fact that autism research funding has been overwhelming directed towards genetic research has limited our understanding of possible environmental triggers. I also believe that vaccine autism connections have not been thoroughly studied despite the Offit Offensive rhetoric to the contrary.  Specifically, Dr. Bernadine Healy pointed out that more study is needed on the possible impact of vaccines taken by pregnant women, particularly when they contain thimerosal.

I welcome research like the vitamin study commented on by Dr. Hall and hope that more studies are conducted on the possible role of prenatal vitamins in causing or triggering autism. Presumably such studies might confirm, refute, modify, or clarify the results reported in this initial study. What I do not welcome is the tendency of intense vaccine safety defenders like Dr. Harriet Hall to use any such study as a launching pad to attack autism parents and to deter any further examination or study of possible vaccine autism connections. Having provided a clear and comprehensible summary of the prenatal vitamin-autism study that even this  autism parent can understand Dr. Hall apparently felt the need to attack autism parents and defend vaccine safety even though the study had nothing to do with vaccines:

"How will the anti-vaccine contingent react to this new study? It was convenient and satisfying for parents to be able to blame vaccines and accuse the evil medical establishment of causing their children’s autism. Now will those parents accept that at least part of the responsibility lies with their own genetic contributions and the mother’s actions prior to pregnancy? That’s not as palatable a thought, but it’s more realistic."

Dr. Hall's comment amounts to a confession of some important points:

1) The "anti-vaccine" contingent is simply a code for autism parents. When she and other vaccine safety defenders talk about anti-vaccine persons, when they attack or criticize them, they are simply attacking parents of autistic children.

2) More than just attacking the views of autism parents Dr. Hall makes it clear that, in her mind at least, the causes of autism disorders rest with the parents ... their genetic contributions, their actions, even their actions prior to pregnancy.  

Autism can not, in Harriet Hall's opinion, result from the contributions of vaccines, the pharmaceutical companies that manufacture them, the doctors who inject them into patients, including pregnant women, the manufacturers of jewelry, children's toys and common household items containing mercury, lead, arsenic, or any other known environmental contaminants in our air or water supplies. 

No, what Dr. Harriet Hall has been quite honest about, to her credit,  is the need of many medical professionals to blame parents in the vaccine autism debates and deter any further investigation of possible vaccine autism connections. 

Why the Big Pharma, Pro-Vaccine Cult is Losing the Vaccine-Autism War

Why prove to a man he is wrong? Is that going to make him like you? Why not let him save face? He didn't ask for your opinion. He didn't want it. Why argue with him? You can't win an argument, because if you lose, you lose it; and if you win it, you lose it. Why? You will feel fine. But what about him? You have made him feel inferior, you hurt his pride, insult his intelligence, his judgment, and his self-respect, and he'll resent your triumph. That will make him strike back, but it will never make him want to change his mind. "A man convinced against his will is of the same opinion still.

Dale Carnegie, How to Win Friends and Influence People

If you support vaccine programs as important public health tools then you are probably insulted, and not persuaded at all, by the title of this blog comment. If anything you will have dug in your heels in opposition to anything further that I might have to say. I doubt that Dale Carnegie would try to persuade people with opposing views to change their mind by insulting them.

Yet, that is exactly what is done every day by media editorial writers, bloggers and even health care professionals who dismiss parents concerned about vaccines being injected into their own children as hysterical. Anyone who asks questions about vaccine safety is branded as a nut, a hysterical parent, ignorant and ill informed, a conspiracy theorist etc. Is it any wonder that parents are not persuaded by such obvious attempts to marginalize them, to dismiss them and their concerns, to insult them?

Directly related to the use of insults to marginalize parents is the disregard for parents direct observation of what is happening to their children. Science, to this layperson anyway, must rely on actual observation as a basis for its method. No one has more direct, prolonged opportunity to observe their children then the parents who live with and care for those children. Yes, other issues arise because of the intensity of that emotional connection but the fact remains that it is parents, not Paul Offit, who actually observes their children, see them progressing and enjoying the milestones typically involved in infant development. It is parents who witness their children regress into autism disorders after vaccination that are in the best position to assess what has happened to their child.

The parents observations are, contrary to some statements that there is no evidence of vaccine autism links, exactly that. This direct observation does constitute evidence, albeit anecdotal evidence, that vaccines caused or contributed to their children's' autism disorder. Dismissing these observations as coincidence is not persuasive unless YOU can prove that it is a coincidence.

There have been a number of epidemiological studies done which are used to argue that science has conclusively disproved a vaccine autism link. Yet those studies have been subjected to what appears to be valid criticisms. The Danish study is perhaps the most notorious example. It compared autism rates before and after thimerosal was removed from vaccines in Denmark, Yet the study itself points out that the comparisons were questionable because of the different groups examined in the different time frames. The Danish study looked at autism rates in the period from 1972-2000. As everyone knows who argues against a real increase in autism rates, the diagnostic criteria for autism changed in the early 90's making it difficult to draw firm conclusions from that study. Perhaps equally as negative about the Danish study is that it was conducted after serious prodding by American health authorities who wanted to dispel a vaccine autism connection.

The epidemiological studies are observational. They do not test an hypothesis in a controlled experiment. No observational studies of vaccinated and unvaccinated populations have been conducted despite existing unvaccinated populations and despite calls for such a study from parents and professionals concerned about possible vaccine autism connections. Dr. Insel did not persuade any persons with vaccine and autism concerns that vaccines are not connected to autism when he appeared before Senator Harkin's committee and declared that an observational study comparing autism rates in vaccinated and unvaccinated populations could not be done. His statement was directly contrary to those of Dr. Bernadine Healy (former NIH head), Dr. Julie Gerberding (former CDC director) and Dr. Duane Alexander, a member of the IACC to the effect that such a study COULD be done. Dr. Healy and Dr. Gerberding have both said that such a study SHOULD be done. When public health authorities refuse to undertake credible research to examine the vaccine autism issue and yet state to the media that the matter is closed, that science has determined the issue conclusively and for all time, their credibility is undermined, their ability to convince concerned parents is weakened.

Dr. Healy, in calling for more research on vaccine autism issues, has pointed out that the epidemiological studies are not specific enough to address vulnerable population subgroups. The Poling case is a perfect example of the validity of that criticism. Not all people are constructed the same. The effect of a vaccine on one person may not be the effect of a vaccine on another. In the Poling case autism resulted from the impact on the child's mitochondrial disorder. Dr. Healy has called for a variety of studies to examine further the vaccine autism issue. Yet her name rarely appears in media summaries of the issue which prefer to paint the issue as Jenny McCarthy against the scientists.

If public health authorities want to restore public trust in vaccines they should do the research that Dr. Healy has called for. They should conduct the observational study comparing existing unvaccinated and vaccinated populations and stop pretending that it can not be done. They should stop pretending that science has conclusively decided the issue when too many people know that not to be true and refuse to be bullied and intimidated. Public health authorities should not be afraid to do more homework to ensure that the chemical and biological concoctions they are insisting people inject into their children are safe in all instances.

If public health authorities want to restore public trust in vaccines and convince us all that vaccines do not cause or contribute to autism they should stop condescending. They should start treating parents like what they are in this matter ... the front line researchers whose observations are invariably the first stage in recognizing and understanding autism disorders in their children. They should start treating those parents with the respect they deserve. Their failure to do so to date has been the biggest reason why they are failing to convince some parents that vaccines are safe. It is the biggest reason the public health authorities are losing the battle to restore public confidence in the safety of vaccines. If you don't believe me, check with Dale Carnegie. He left us with some notes on the subject.

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Stupid Autism Parents?

Apparently there are a lot of SAPs, Stupid Autism Parents, behind all the uproar over possible vaccine autism connections.

Those parents who accept the official view that autism is 100% genetic and that substances injected into young children can not possibly disrupt or damage their neurological systems are smart, good guy parents. Those who want to treat or cure their children, who question vaccine safety, the combinations of vaccines, the frequency of vaccines and the biological and chemical agents contained in vaccines are ..... well .... just not that smart.

Being a Stupid Autism Parent who believes that autism is a disorder for which a cure is badly needed, that it results from an interaction of genetic and environmental factors and that vaccines MIGHT play a role in causing or triggering autism in some cases I was grateful to learn from a discussion at "Aspies for Freedom" that it is just my own stupidity that leads me to such erroneous beliefs and irrational concerns. In the end parents who post at Autism Speaks are stupid and parents who post at Aspies for Freedom are smarter. It's true, Aspies for Freedom says so.

Aspies for Freedom is a site which appears to be dedicated to the rights of "Aspies" to be free, although free in what sense is not clear since most of the posters appear to reside in the US, UK and Canada where fundamental freedoms are constitutionally entrenched. Perhaps it means freedom to determine what is best for other people's Autistic children? Aspies for Freedom started a highly enlightening, intellectually sophisticated discussion topic called:

A General Comparison Between Parents on This Forum and Parents on Autism Speaks

The general gist of the opening post, by a brilliant intellectual posting as Mars Mariner, and subsequent discussion is that parents who post at Aspies for Freedom are smart and parents who post on the Autism Speaks forum are well ... not so smart:

Post 1

I would make a general comparison between parents here and parents on Autism Speaks. Again, this is a very general comparison, one that I do not intend as a slander against the parents on the "other" forum. However, my sense is that parents here enjoy a greater level of education and critical faculties than their peers on the other forum. It is not my intent to belittle the earnest and sincere parents on Autism Speaks. However, it seemed from my experience there as though they were not discerning people. My sense is that they were younger, not college educated, and more susceptible to seeing the world simplistically. I may be wrong in my perception, but that seems like a general rule of thumb.

I am not coming at this from an elitist perspective (I hope not). Rather, I am sincerely recalling my experience there. What disturbed me, however, was one other difference between parent cultures there and here. Parents there seemed not to care about children beyond their own to the degree that parents here do. It was not so much that they agreed with the torture going on at the Judge Rotenberg Center; more that they did not care too much about the sphere beyond their immediate concern. Parents here seem a lot warmer.

If I am mistaken, or if I have over-generalized, I apologise. Again, I think that parents on the other forum are more likely to look at reality simplistically. A lot of them were disaffected with Autism Speaks because it will not endorse the vaccine view. Autism Speaks endorses establishment positions, while the anti-vaccine people are decidedly against the pharma cartels. However, both factions, the establishment eugenicists and the anti-establishment vaccine people, believe in Neurotypicalism. Neither side can see Autistic people as having positive contributions to make. Both see a "problem," to be cured in a society dedicated to Enlightenment modes of rational problem solving.

In summation, my time there was somewhat disturbing. I wanted to like the parents there, but found that I could not relate to most of them. Few of them were even interested in what I had to say enough to tell me to shove...whatever they would tell me. This was disturbing, because I was willing to be of assistance as much as possible with what I could help.

However, it is also possible that few parents of intellectually inclined Autistics visit that forum. It is possible that more such parents are here than there. Hence, my experiences may not have been of value to them. My time there was brief, and rather unproductive. To top it off, the moderators there allowed a pornographer to spam the whole website, one visited by children! I will never return.

Another intellectual giant writing as Pakrat chipped in:

Post 2

RE: A General Comparison Between Parents on This Forum and Parents on Autism Speaks

I also notice on FB that the old chestnut of vaccine causing autism is very much alive and some of the parents disbelieve the evidence discrediting the supposed link. One woman got incredibly hysterical when I told her that vaccines did not cause her brother's severe autism. She made all kinds of insults against me which I found amusing since they were so ludicrous but it goes to show that when there is an emotive subject, reason can be quite lacking.

Yes, I believe the parents here are generally brighter and more deep thinking than in sites such as Autism Speaks. It's also possible though that the other parents have more severely affected children and therefore were exposed to more hype about "cures" and more indoctrination about the "tragedy of autism". People who prey on desperation are indeed despicable and all too common.

The discussion was also enlightened by one of the "smart" parents, posting as "atypical", who frequents the Aspies for Freedom site and, not surprisingly. agrees with the proposition that parents who frequent Aspies for Freedom are smarter than those at Autism Speaks:

Post 4

I think that if we/us parents seem brighter - it may be because -we found this place and stayed because the people here remind us of our children - or something in ourselves. Not average and mundane, but interesting, complicated, freedom lovers (It's in the name!)...

I feell lucky to have a different way of looking at things -I/WE ARE LUCKY TO BE AWARE, it is a blessing to see things in an atypical way AND instead of us changing our children, our children change us.

I am probably just not as smart, or as "aware", as "atypical" but I do take autism seriously as a disorder which seriously restricts the life opportunities of my son. It is in truth sad to see some persons with Aspergers Disorder, and some parents, posting such offensive material on the site, one of the alleged "Autism" Hub sites.

I know some persons with Aspergers and High Functioning Autism who do not indulge in such foolish, offensive trash talking and who do in fact show respect for the rights and responsibilities of parents to do the best they can to help their children live the fullest life possible. It is too bad that the "intellectuals" at Aspies for Freedom and other Autism Hub web sites don't display the same good character.

In the bigger picture the demeaning characterization of parents who seek cures for their autistic children or those who question vaccine safety as less intelligent than those who embrace their children's autism disorder as a blessing and do not question what gets injected into their young children's bodies is not much different than the marginalization of parents conducted by Paul Offit and other government and pharmaceutical spokespersons.

Offit and company also want the public to believe that parents who question vaccine safety are of lesser intelligence. Parental observations, no matter how many times the same pattern occurs are dismissed as coincidence. Parents, ALL parents who question vaccine safety are gullible fools seduced by charlatans ... or they are hysterical wing nuts because some apparently committed criminal, threatening acts toward Dr. Offit and his family.

And so we can just ignore ALL parents who see their children regress into autism after vaccination (unless they are a neurologist who can not be ignored or marginalized like Dr. Jon Poling).

If only those Stupid Autism Parents would just do as they were told.

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Autism Treatment - Anti-ABA Activist Michelle Dawson Regurgitates Her Tired Anti-ABA Rhetoric

Perhaps she senses that the battle is lost.

Michelle Dawson is once again lashing out with the same stale anti-ABA rhetoric in An anomaly in autism intervention research. There is little new in this latest rant. First diagnosed as an adult "autistic" with an unspecified Autism Spectrum Disorder Ms Dawson has made a career out of opposing efforts by parents to obtain ABA treatment for their children.

Together with her comrade in arms in anti-ABA activism, Dr. Laurent Mottron, Michelle Dawson has appeared before the Supreme Court of Canada, the Canadian Senate, several times before CBC cameras and microphones, and been interviewed numerous times, telling the world that she and Dr. Laurent Mottron know better than the US Surgeon General, the Association for Science in Autism Treatment, the MADSEC Autism Task Force, the New York State Department of Health, the American Academy of Pediatrics, the May Institute, the Center for Autism and Related Disorders, Inc. and of course the Lovaas Institute.* (not an exhaustive list) about the effectiveness of ABA as an autism intervention. And now she is at it again.

Ms Dawson's latest anti-ABA rant features more of the same old arguments and allegations and one revealing statement that shows that she really is out of touch, not just with the realities of autistic children, but also with basic family rights and responsibilities:

The practice of claiming effectiveness for an autism intervention which has not been fairly tested, then using these claims of effectiveness to deem fair tests unethical, has clear benefits to service providers. And this practice has received wall-to-wall support from autism advocates, who have in turn imposed it on autistics through lobbying and litigation.

ABA is not generally imposed on adult autistic persons. (Never to my knowledge) . The autism advocates that Michelle Dawson is referring to are parents of autistic children seeking to obtain the well documented benefits of ABA treatment for their children. Ms Dawson to my knowledge, is not herself a parent. She apparently believes that she, diagnosed as autistic as an adult, is better informed and has a greater right and responsibility, to determine what is good for autistic children than the parents of those children.

Michelle Dawson is wrong. Again.

*(Note: the May Institute, the CARD and the Lovaas Institute actually work with autistic children applying ABA, helping them overcome autism disorder deficits, and know what they are talking about from direct first hand experience).

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False Autism Advocacy and the UN Declaration of the Rights of the Child 1959

Attacks on parents of autistic children advocating for treatment and cure of their autistic children have been ramped up of late. Jenny McCarthy is but one parent, albeit very high profile, who is vilified by mainstream media that typically report one side of the vaccine autism debate (the pro-vaccine side) and by the Neurodiversity ideological groups that insist that they know better than parents what is good for their autistic children. Some of the attacks are cheap and some are just plain irrational. All ignore the UN declared rights of autistic children to treatment and cure for their neurological disorder and their right to be represented, in the first instance, by their parents.

When a fully functioning adult with Aspergers or High Functioning Autism tells the world that "we don't want to be cured" referring to all persons, including children with severe autistic disorder, he, or she, is practicing false advocacy and is in fact advocating against the rights of autistic children to be treated for their neurological disorder, to develop fully and to be represented by their parents. When a person who can meet with judges, presidents and other potentates and conduct endless media interviews, purports to speak on behalf of a severely autistic child he, or she, does not know, a child who can barely communicate with the world he, or she, is practicing false advocacy.

Such persons, when they attack the parents seeking to treat their child's autism disorder, are advocating against the UN declared rights of that child.

Such persons are practicing false advocacy.

Declaration of the Rights of the Child

Proclaimed by General Assembly resolution 1386(XIV) of 20 November 1959

Whereas the peoples of the United Nations have, in the Charter, reaffirmed their faith in fundamental human rights and in the dignity and worth of the human person, and have determined to promote social progress and better standards of life in larger freedom,

Whereas the United Nations has, in the Universal Declaration of Human Rights, proclaimed that everyone is entitled to all the rights and freedoms set forth therein, without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status,

Whereas the child, by reason of his physical and mental immaturity, needs special safeguards and care, including appropriate legal protection, before as well as after birth,

Whereas the need for such special safeguards has been stated in the Geneva Declaration of the Rights of the Child of 1924, and recognized in the Universal Declaration of Human Rights and in the statutes of specialized agencies and international organizations concerned with the welfare of children,

Whereas mankind owes to the child the best it has to give,

Now therefore,

The General Assembly

Proclaims this Declaration of the Rights of the Child to the end that he may have a happy childhood and enjoy for his own good and for the good of society the rights and freedoms herein set forth, and calls upon parents, upon men and women as individuals, and upon voluntary organizations, local authorities and national Governments to recognize these rights and strive for their observance by legislative and other measures progressively taken in accordance with the following principles:

Principle 1

The child shall enjoy all the rights set forth in this Declaration. Every child, without any exception whatsoever, shall be entitled to these rights, without distinction or discrimination on account of race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status, whether of himself or of his family.

Principle 2

The child shall enjoy special protection, and shall be given opportunities and facilities, by law and by other means, to enable him to develop physically, mentally, morally, spiritually and socially in a healthy and normal manner and in conditions of freedom and dignity. In the enactment of laws for this purpose, the best interests of the child shall be the paramount consideration.

Principle 3

The child shall be entitled from his birth to a name and a nationality.

Principle 4

The child shall enjoy the benefits of social security. He shall be entitled to grow and develop in health; to this end, special care and protection shall be provided both to him and to his mother, including adequate pre-natal and post-natal care. The child shall have the right to adequate nutrition, housing, recreation and medical services.

Principle 5

The child who is physically, mentally or socially handicapped shall be given the special treatment, education and care required by his particular condition.

Principle 6

The child, for the full and harmonious development of his personality, needs love and understanding. He shall, wherever possible, grow up in the care and under the responsibility of his parents, and, in any case, in an atmosphere of affection and of moral and material security; a child of tender years shall not, save in exceptional circumstances, be separated from his mother. Society and the public authorities shall have the duty to extend particular care to children without a family and to those without adequate means of support. Payment of State and other assistance towards the maintenance of children of large families is desirable.

Principle 7

The child is entitled to receive education, which shall be free and compulsory, at least in the elementary stages. He shall be given an education which will promote his general culture and enable him, on a basis of equal opportunity, to develop his abilities, his individual judgement, and his sense of moral and social responsibility, and to become a useful member of society.

The best interests of the child shall be the guiding principle of those responsible for his education and guidance; that responsibility lies in the first place with his parents.

The child shall have full opportunity for play and recreation, which should be directed to the same purposes as education; society and the public authorities shall endeavour to promote the enjoyment of this right.

Principle 8

The child shall in all circumstances be among the first to receive protection and relief.

Principle 9

The child shall be protected against all forms of neglect, cruelty and exploitation. He shall not be the subject of traffic, in any form.

The child shall not be admitted to employment before an appropriate minimum age; he shall in no case be caused or permitted to engage in any occupation or employment which would prejudice his health or education, or interfere with his physical, mental or moral development.

Principle 10

The child shall be protected from practices which may foster racial, religious and any other form of discrimination. He shall be brought up in a spirit of understanding, tolerance, friendship among peoples, peace and universal brotherhood, and in full consciousness that his energy and talents should be devoted to the service of his fellow men.

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When You Have An Autistic Child

Any reader of this blog knows of my disgust with some of the high profile media coverage of autism disorders and autism realities.

From the CBC, command central for the "positively unrepresentative of autism disorders" Neurodiversity ideology and the quirky, quarky rhetoric of Michelle Dawson and Dr. Laurent Mottron, to CNN star Dr. Sanjay Gupta's odd obsession with Amanda Baggs, an alleged autistic person whose ""autism insights" and scripted autism videos seem contrived to many autism parents, the most prominent television "news" machines seem intent on Hollywood "Rain Main" style coverage of autism than on reporting the grim realities confronting many persons with autism disorders and their families. The print based media offers more diversity of autism coverage. While the barely autistic, we don't want a cure, movement gets glossy magazine coverage there are some reality based autism news features in the print media.

Faces of Autism is an excellent, reality based, spectrum wide, treatment of autism from journalist Pete McMartin and photographer Glenn Baglo in the The Vancouver Sun which first appeared in April 2007. And today the Montreal Gazette offers an understanding report on some realities facing parents of autistic children. Reporter Elaine Creighton and the Gazette tell it like it is in Raising an autistic child is not easy featuring Ghislaine Noé the mother of a young non-verbal autistic man now living in a rural residence.

The story tells of frightening moments like realizing her then 5 year old son was walking on the roof top to the everyday challenges of brushing teeth and public behavior issues to the sad fact that her son was at some point too much of a challenge for her in an urban environment.

Ms Crieghton and the Gazette tell of the love and compassion this mother has for her autistic son and provides a rare understanding of the challenges of parenting a child with autism:

"When you have an autistic child, you must be mindful of everything. "


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On World Autism Awareness Day Respect Parents of Children with Autism Disorders

On World Autism Awareness Day respect the parents of autistic children and remember the role they play in helping their children realize their fullest potential in life.

From the days of Bruno Bettelheim when mothers of autistic children, based on one man's musings, were blamed for causing their children's autism disorders by being cold and lacking affection for their children, to the present, parents of autistic children have been vilified. Today anti-cure ideologues attack parents of autistic children for trying to treat and cure their own children.

Parents who speak openly about the negative realities of their children's autism disorders are condemned by the ideologues who praise autism disorders as a natural variation. Parents of autistic children concerned about the safety of what is injected into their children are mocked and ridiculed, behavior condoned and joined in by vaccine patent holders and ill informed journalists alike. Parents of autistic children who tantrum publicly are scorned as bad parents by ill informed strangers in shopping malls. Parents of autistic children are perhaps the only set of parents who have ever been so vilified by so many for trying to fulfill their responsibilities as parents and care for their children. Today the attacks continue albeit disguised under other labels "anti-vaxxers", "autism advocates", "behaviourists" etc.

Why whine about attacks on parents of autistic children instead of focusing on the children themselves in this post? Because, it is parents, with some exceptions, who protect and advance the interests of autistic children. Not advocates on behalf of abstraction, on behalf of a medical disorder generally.

When Ari Ne'eman says "we don't want to be cured" of our autism who is he representing? He is not representing my son with autistic disorder. I do that. Ari Ne'eman, Michelle Dawson, Amanda Baggs, Jim Sinclair, none of these people represent my son. None of them cleaned his butt as a baby, went to work each day to provide for him, took him to the hospital to have his fractured arm taken care of or to have dental filling work done. None of them got out of bed when he screamed at night or take him to school every day. They do not laugh with him every day, walk the trails with him in Fredericton, New Brunswick, or rise with him every day to hug him and watch the 7:10 sun.

It is parents who represent our children, protect them and advocate for their best interests. We are not advocating for an abstraction, we are not advocating on behalf of "autistics", whatever is meant by that expression when used by people who claim to be autistic but claim that autistic disorder is not really a medical disorder. Attacks on parents advocating for their children with autism disorders are attacks on autistic children by attacking those who protect and advance their children's interests.

The UN Declaration of the Rights of the Child, 1959, stated:


Principle 7

The child is entitled to receive education, which shall be free and compulsory, at least in the elementary stages. He shall be given an education which will promote his general culture and enable him, on a basis of equal opportunity, to develop his abilities, his individual judgement, and his sense of moral and social responsibility, and to become a useful member of society.

The best interests of the child shall be the guiding principle of those responsible for his education and guidance; that responsibility lies in the first place with his parents.

The child shall have full opportunity for play and recreation, which should be directed to the same purposes as education; society and the public authorities shall endeavour to promote the enjoyment of this right.

The responsibility for the best interests of autistic children lies in the first place with his or her parents. Attacking parents of autistic children, in most cases, will be nothing more than an attack on the autistic children for whom they are responsible.

On World Autism Awareness Day I ask that you respect the role and responsibility of parents in representing their autistic children's best interests.

autism

Parents As Autism Experts and Autism Northern Ireland

There are very few, autism "experts" here who are not parents of children with autism. Yet we rarely hear from them. I am one of those experts.

No one understands my boy's particular autism the way I do and no one can help him as much as me.

Autism Northern Ireland, March 15, 2009

Autism Northern Ireland is a brand new blog (since March 15 2009) which makes the interesting comment cited above in its first post. The blog does not provide any profile information about the blog owner but the initial comments indicate that the author is the parent of an autistic boy living in North Ireland that has been involved with autism organizations in Northern Ireland for several years and has not always found them very helpful.

I agree with Autism Northern Ireland's first post. Autism disorders are defined and diagnosed behaviorally. No one knows our autistic son's behavior as well as his parents. We are autism experts, at least in respect of Conor. And that very special , particular expertise helps us see through some of the nonsensical generalizations about autism that are promoted on the internet and mainstream media alike.

I look forward to reading further posts and comments at Autism Northern Ireland.

autism

Why Can't We Face the Truth? Autism Reality from the UK

I phoned with New Year good wishes. Helen answered, in tears. Her head hurt, she said; Tom had ripped out a handful of her hair by the roots. Bit her, too. But I couldn't hear what she was saying for the insistent shrieking in the background.

Carole Sawler, describing a phone call to a mother of an autistic child

In Why can't we face the truth? Having an autistic child wrecks your life ... on Mailonline, Carole Sawler provides some reality about autism disorders. Not the fluffy, head in the sand, Joy of Autism stuff that celebrates autistic disorders and would have you believe that it is a good thing that your child is autistic, but the gritty, harsh realities captured in the above quote and some others too like the impacts on parents careers, travel plans ... or just the ability to relax.

I read this article after a rough night with Conor. I love Conor deeply. He is my buddy, forever. But last night was not one filled with sleep and a long day lies ahead. I refuse to pretend, as the Joy of Autism crowd would have it, that all is sweetness and light with autism disorders. At least not for all autistic persons, particularly the more severely affected, those whom the Neurodiversity movement pretends do not exist. And not for all families with autistic members.

Carole Sawler asks "Why can't we face the truth?". A very good question.

autism

Autism Advocacy - Parents Lead the Fight for Autism Services

Here in New Brunswick it is parents who have led the fight for autism services. That fight began many years ago. In November 2001 a government report often referred to as "the IDC Report" , almost two years after the inter departmental committee was struck which issued the report, concluded that there was very little in the way of autism specific services offered by the Province of New Brunswick. That has changed significantly but much remains to be done. The changes that were made included some pre-school funding, proper training of autism intervention workers at the UNB-CEL Autism Intervention Training program, and the first stages of training of teachers aides and resource teachers at the UNB-CEL AIT program. Huge challenges remain in all areas and especially in the areas of youth and adult residential care, employment opportunities and quality of life. But none of the positive changes that have been made here in New Brunswick would have taken place without intense parental advocacy.

Parents of autistic children also lead the charge for better services elsewhere. FEAT organizations and similar parent driven groups have led the fight in other jurisdiction in North America. In Ontario the Ontario Autism Coalition is preparing to insert autism issues into the impending election in that province. South Carolina saw an incredible effort led by three determined mothers who wrote a bill requiring greater autism coverage and lobbied to get it through the SC legislature even overriding the South Carolina Governor Mark Sanford's veto. The law takes effect July 1, 2008,


http://www.npr.org/templates/story/story.php?storyId=12829221

Morning Edition, August 16, 2007 · Coverage for the therapies and treatment associated with autism is limited in most states. But a growing number of states are mandating more complete coverage for this condition.

South Carolina just passed a law requiring greater coverage. Three mothers of autistic children joined together to write the bill and push it through the legislature, over the governor's veto.