Autism and Haircuts: Conor Has A Great Haircut Treat Adventure

Above: Conor after this morning's haircut.



Below: Conor before this morning's haircut.

Conor has full blown Autistic Disorder with profound developmental delays. Haircuts were a real challenge at one time.  But things have improved dramatically with time, effort, planning and education.Today was a great haircut day for Conor with very little difficulty and he is much more comfortable with much of his thick hair laying in piles around the barber chair.  

I thought I would share some of our approach for those who are looking for ideas; things that have helped us with Conor:



1. Pick a spot which has less traffic and noise for your child's haircut.

2. Pick a time when there will be less traffic. For us it is 9 am Saturday morning.

3. Find someone to cut your child's hair who has patience, understanding, empathy and willingness to take her/his time, using scissors as much as possible, and, as much as possible, without electric buzzing clippers.

4. Stick with the same person, place and time for the haircuts as much as possible.

5. Tell your child beforehand that they will be going for a haircut in a day or two, so that it is not a surprise for them.

6. Have mom  or dad close by ready to hold their hand and talk to them.

7. Distract them if necessary with verbal games eg having them count by 10's, 5's, 2's etc, or sing songs.

8. Bribe them. Tell them they are going on a haircut treat adventure with the treat following the haircut.

9. Tell them what a great job they are doing, what a great boy/girl they are as they are getting their hair cut.

These are some of the things that have worked for us.  Each time Conor gets a haircut with minimal fuss it is in itself a form of reward that should make it easier the next time.  Maybe some autistic children don't need special efforts by their parents and power to them and their families. If you do you may want to consider these suggestions ... if you haven't already.

(Yes, I bribed Conor today too, with a trip to McDonald's for some hash browns, which Dad also enjoys)

Autism Functioning Levels Are Important, Reality Based Distinctions, It Is Time To STOP Pretending They Do Not Exist

There are people whose opinions about autism are sought out by members of the media who promote the falsehood that there is no such thing as people who are low-functioning. Those who promote this falsehood should STOP doing so and they should stop right now. They are causing harm. 

We do not do any favors for persons who are severely affected by disorders like autistic disorder, those who have serious intellectual deficits and lack the ability to function independently, by making statements denying that some persons with autism are low functioning because of their autism.  We are hurting them by denying their reality and by assigning blame to them and family members because they do not meet  the high standards of those less severely affected, if at all, by autism. Under the DSM5's new Autism Spectrum Disorder persons who lacks functioning deficits in everyday life activities should not receive a diagnosis  and should not be described as autistic. The proposed wording of the New Autism Spectrum Disorder, despite some questionable components, does make the functioning issue clear in Criterion D of the 4 mandatory criteria to meet an ASD diagnosis:

"D.         Symptoms together limit and impair everyday functioning."



The three categories in the New ASD are distinguished based on functioning levels:



"Level 1 Requiring Support





Level 2 Requiring Substantial Support 





Level 3 Requiring Very Substantial Support "

Being positive about facing challenges should not be taken to the extreme of denying that many people have disorders that in fact render them low functioning even to the extent of being dependent on the care of others in order to live. J E Robison, Alex Plank, Ari Ne'eman, Michelle Dawson and most, if any,  of the members of the Board of Directors of ASAN Inc. do not share the deficits, the low functioning levels, of the 80% of persons with Autistic Disorder (DSM-IV) who have intellectual disabilities.  These successful business people, college graduates, researchers and political participants, some who have sufficient communication skills and social abilities to be able to play in rock bands, find marriage partners, raise families, and participate in high level political and corporate environments do not share the challenges faced by the low functioning persons with autistic disorder whose realities they downplay or deny entirely.  The great irony is that it is on THE Spectrum, Autism Spectrum Disorder, where you find persons with an incredibly wide and disparate range of abilities, deficits and challenges that we are most likely to find people denying that functioning levels matter or even exist.

The attempt to deny the importance of different functioning levels among persons with Autism Spectrum Disorders should STOP right now.  It hurts those most severely affected by autism.

Here We Go Again: Citizenship and Immigration Canada Divides Family, Rules Son with Asperger's and Tourette's Medically Inadmissible

Here we go again. 

Nicholas Keung, immigration reporter with the Toronto Star reports that a Toronto family will be ripped apart by a Citizenship and Immigration Canada  ruling that University of Toronto professor Thomas Reynolds son Chris is is medically inadmissible to Canada and therefore ineligible to stay with his father because of his Asperger's Disorder and Tourettes disorders. As reported by Nicholas Keung:

"Born in Nashville, Tenn., Chris, an American citizen, has lived in Toronto since 2007, with his expatriate father, a tenured theology professor at the University of Toronto’s Emmanuel College, and younger brother, Evan, 17, who is still in high school — both here on their father’s work permit. Shortly after arriving in Toronto, the family applied to immigrate from within Canada.



An early medical assessment by Citizenship and Immigration Canada concluded that Chris would place an “excessive demand” on health and social services, and hinder the family’s chances of being accepted.



Officials never met with Chris but deemed him “medically inadmissible” and estimated his care could cost Canadians $7,000 a year."

It remains to be seen whether people in Toronto and Ontario will exert the kind of pressure necessary to pressure politicians to take action to stop the division of this family.  New Brunswick is a small province where the Cheers refrain  "everybody knows your name" rings very true. Ontario, where I attended high school (Petawawa)  and Toronto, where I have previously worked and  lived are obviously much larger, urban and complex entities than New Brunswick.  Will the plight of one family facing division drive the good people of Ontario to take the intense, sustained action necessary to move politicians and bureaucrats to reverse this family dividing decision?  

Personally I hope so.  In the Reynolds case two sons have been living here for 4  years with their expatriate father who is a tenured professor of theology in Toronto.  I am very uncomfortable with Canada breaking up or exporting families solely because a family member has an autism spectrum diagnosis or any medical condition. There are differing opinions on these issues but I don't like it. To me it doesn't feel right. It doesn't feel Canadian. I am hoping for a Vancouver victory in the Stanley Cup Final tonight and I am hoping for a Reynolds family victory in their struggle to stay together. One family. In Canada.

Minister Jason Kenney In Response to Don Davies Question About Maeng Family Deportation

The Honourable Minister of Citizenship and Immigration Jason Kenney commented generally in reply to Vancouver Kingsway MP Don Davies' specific concerns about the Maeng family deportation.  The Maeng family has lived in NB for several years and have been valued contributing members to the local community. Their eldest son has done well in school and is studying to become a dentist.  Their younger son has autism and epilepsy and for this reason, years after the family arrived in Canada, and after disclosing the son's autism condition, Canada has ordered the entire family deported by the end of June.  Don Davies MP for Vancouver Kingsway, BRITISH COLUMBIA, questioned Minister Kenney and received this reply as reported in Hansard:

Hon. Jason Kenney (Minister of Citizenship, Immigration and Multiculturalism, CPC):  

    Mr. Speaker, first of all I congratulate the member on his re-election and his appointment as the immigration critic for the official opposition.    The member knows that the minister cannot comment on particular cases because of the Privacy Act. Having said that, there is a very fair process, including access to applications for permanent residency for humanitarian and compassionate reasons by individuals. Those are not considered by elected officials but by highly trained public servants. I would point out that there is in our law provision for medical inadmissibility for those who the provinces deem would represent an undue burden to our tax-funded public health care system.

Study Finds Positive Association Between Autism and Vaccines

A  recent (Online publication date: 26 May 2011) study published in the Journal of Toxicology and Environmental Health reports ,as set out in the report title, that a positive association has been found between autism and vaccines: A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population. The study abstract places the conclusion in the context of current thinking which sees autism as the interaction of genetic predispositions and environmental triggers.  It also identifies flaws in some of the major studies which are touted as "debunking" any possible autism vaccine connection.

The genetic-environmental model of autism causation does not appear to have broken through the rigid mindsets of  those who sek to discourage  any further investigation of possible autism vaccine connections, people like  Paul Offit, Bill Gates and Richard Gorski.  These attack dogs will undoubtedly bark and snarl at this study and attack personally anyone involved with it.

For people with open minds on this serious issue though the article abstract states:

"One of those triggers might be the battery of vaccinations that young children receive. Using regression analysis and controlling for family income and ethnicity, the relationship between the proportion of children who received the recommended vaccines by age 2 years and the prevalence of autism (AUT) or speech or language impairment (SLI) in each U.S. state from 2001 and 2007 was determined. A positive and statistically significant relationship was found: The higher the proportion of children receiving recommended vaccinations, the higher was the prevalence of AUT or SLI. A 1% increase in vaccination was associated with an additional 680 children having AUT or SLI. Neither parental behavior nor access to care affected the results, since vaccination proportions were not significantly related (statistically) to any other disability or to the number of pediatricians in a U.S. state. The results suggest that although mercury has been removed from many vaccines, other culprits may link vaccines to autism. Further study into the relationship between vaccines and autism is warranted."

This study, like all studies, including those that purport to "debunk" any autism vaccine connections will, and should, be given close examination, and criticism, if warranted.  Hopefully reviews of this study will be conducted by serious, objective scientists and not just those with a "defend vaccines at all costs" agenda.  That, of course, is a very faint hope.  Paul Offit and his followers have doubled down on the irrational strategy of personally attacking parents, and researchers, concerned about possible role of vaccines and vaccine ingredients in triggering autism and other neurological disorders in children instead of continuing calmly with objective examination of their concerns.  

Dear USA: This Canadian Father With a Severely Autistic Son Says Thank You for Combating Autism

"in order to continue meeting the needs of people with autism, the Combating Autism Act

must be fully reauthorized. We still have a long way to go. Working collaboratively with

important partners, the Affordable Care Act and the Combating Autism Act will allow   

 us to research and develop and refine vital treatments

Kathleen Sebelius,  US Secretary of Health and Human Services, April 25, 2011

Autism is a severe and limiting medical disorder for which treatments and cures must be found through solid, focused research.  Autism is a disorder which should be combated so that those who suffer from it can live fuller, more independent, lives. Here in Canada we do not have a serious, focused national autism strategy or recognition of the need for a national effort to combat autism disorders.  We are lucky that our  neighbors in the US have had the good sense and determination  to try and address and combat autism disorders through research  efforts under the Combating Autism Act.

This Canadian  thinks of many things when I think of the USA.  Some of these things are negative. Most are positive, very positive. I think of our neighbors as confident, freedom loving people who constantly seek to better themselves. I think of Americans as people with strong commitments to family.  I think of Americans as people who are afraid of no challenge as amply demonstrated by the audacious and successful commitment by former President John F. Kennedy to put men on the moon by the end of the 1960's.  Autism is a serious disorder which impairs and restricts the lives of those who suffer from it.  The continued efforts in the US, under the provisions of the Combating Autism Act, have helped direct research toward understanding and finding treatments and cures for autism.  It is of great  importance for everyone affected by the serious challenges of autism, including Canadians, that those efforts, and the Combating Autism Act, continue.

This Canadian father with a severely autistic son says thank you to our American friends for the efforts made under the Combating Autism Act.  I  hope you decide to continue this important undertaking. It may not be as glamorous as putting men on the moon but, for many affected by autism and their families, it is of fundamental importance.

You Want Some Autism Awareness? Autism Is A Disorder, Autism Can Restrict Lives, Autism Can End Lives

The site where Adam Benhamama's body was found Tuesday, 

several kilometres downstream from where police believe he 

fell  into  the water  in early April. (Elias Abboud/CBC)

Two incidents in recent days have driven home, once again,  for Canadian parents of autistic children the harsher realities of autism. An autistic boy was banned from  school in Etobicoke because of his autistic challenges even though the school  had not provided autism trained assistants and the body of a young autistic boy, Adam Benhamama, was found and identified after he had been missing for several weeks and, as feared, was found to have drowned.  

News of such events may come as a surprise to many in the public for whom autism is seen as just a different personality type, a misconception created by the rhetoric of the persons, some of whom have no actual autism diagnosis who describe autism as a different, even superior, way of life. In Canada, the misrepresentation of autism disorders is so widespread that even a prominent politician like Conservative heavyweight James Moore has stated publicly that autism is not a disability. 

Autism has not always been the autism of Michelle Dawson, Ari Ne'eman, John Elder Robison or Roy Richard Grinker.  At one time, before the word "autism" became a badge for some very high functioning persons who identified with the word autism, it was known for what it was, a neurological disorder that restricts the lives, can even end the lives, of those who suffer from it.  Like many parents of children severely affected by actual Autistic Disorder, I  have watched in dismay as  successful, high functioning persons have appropriated the label autism and misrepresented it to the public, in the process obscuring the harsh realities endured by those with actual, classic low functioning Autistic Disorder.

A number of years ago we almost lost our  son, diagnosed with Autistic Disorder, assessed with profound developmental delays, when he wandered from our home and crossed busy nearby streets, including the bustling parking lot of a nearby drinking establishment while I was distracted by a business call at home.  I can not mention this incident without giving public thanks to the unknown and caring man who got out of his vehicle and took my son, who was blocking traffic in a nearby street, to a local convenience store where the police were called. The gentleman waited until I arrived before turning abruptly, without identifying himself, and without waiting for a thank you, and left the store.



The intense feelings of that day, the  fear, the guilt, the enormous relief on knowing my son was safe ... the gratitude to his unknown benefactor ... will never leave me.  Nor can I ever buy into the dangerous nonsense peddled by those who build careers for themselves portraying autism as anything but what it is .... a disabling disorder which can restrict and even end lives.  

Should Grinker and Co's Flawed South Korean Autism Study be Taken Seriously?

The newly reported autism study from South Korea with its "shocking" 1 in 38 autism rates figure doesn't make much sense. As reported in the Boston Globe:



"Roy Richard Grinker, a cultural anthropologist at George Washington University who worked on the study, said his own child with autism would probably function very well in such a system.



"Many kids with autism who are doing well can adapt to that highly structured situation," he said.



So, what does this finding mean for the United States?



Not necessarily much, according to several researchers who were not involved in the study. They praised the study generally, but pointed out flaws and assumptions that raise questions about whether there really are so many kids with autism in South Korea -- and by extension, in the United States.



Dr. Isaac S. Kohane, a professor of pediatrics at Children’s Hospital Boston and Harvard Medical School, said he thinks the researchers may have taken their estimations too far by assuming that the rate of autism was the same among the nearly 700 families who declined followup assessments for their children, as among the ones who agreed. Wouldn’t a parent worried about a child be more likely to participate than one with no concerns? Without this assumption, Kohane says the researchers would have found roughly the same 1 in 100 prevalence we see in the United States.



Also, the definition of "autism" is so squishy today that it’s very hard to draw the line between autistic and non-autistic, he and other researchers said."



I am the father of a low functioning son with Autistic Disorder and I am not a fan of Roy Richard Grinker's involvement in defining autism and autism prevalence estimates. Grinker is the father of a high functioning child with Asperger's who favors the New Autism Spectrum Disorder definitions of the DSM-5.



I don't know why an anthropologist with strong biases was involved in an autism prevalence study in South Korea. I am not surprised though if a Grinker involved study found higher rates of autism ... particularly if the autistic persons found to have been missed were very high functioning.



Regardless, Dr. Kohane a professor of pediatrics at Children’s Hospital Boston and Harvard Medical School has pointed out some serious flaws and assumptions involved in the study. Hopefully other serious professionals will examine the study and consider Dr. Kohane's comments before promoting the 1 in 38 study from Grinker and Co.

Wheeling & Dealing & Avoiding FDA Scrutiny at the Vaccine Business Industry (Big Pharma) Congress

The vaccine industry business congress  referenced above states that it is scheduled for Baltimore in the fall of 2011 although the agenda indicates dates in March 2011.   More significantly the first items on the agenda show clearly the priorities of Big Pharma, as the conference brochure itself refers to the vaccine industry, which are maximizing government sponsored funding and avoiding FDA scrutiny.  Great stuff.

Yes, the Congress brochure does refer, several times, to Big Pharma, so don't go all Orac berserk on me for using that expression.



No word on whether  Offit, Orac, Mnookin or Deer were/will be in attendance.

Autism and the Stigma of Intellectual Disability: Some CDC Facts

CDC:  Intelligence quotient (IQ) of children aged 8 years with an autism spectrum disorder (ASD) for whom psychometric test data were available,* by site and sex (IQ) score-Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2006

Last week some "autism" blog sites on the internet launched more personal attacks against me for daring to again correct the myth that ALL, or MOST, autistic persons are characterized by high intelligence.  I am not going to respond to the silly comments directly.  I will refer anyone who is interested in the subject and who  wishes to look at autism disorders realistically to the Centers for Disease Control and Prevention site which states that:



"A report published by CDC in 2009, shows that 30-51% (41% on average) of the children who had an ASD also had an Intellectual Disability (intelligence quotient <=70)."

The above information from the CDC is referring to ALL persons with ANY Autism Spectrum Disorder including those with Asperger's Disorder.  By definition Asperger's excludes diagnosis where the person has cognitive impairment.  For classic Autistic Disorder the average number of persons with an Intlellectual Disability or Cognitive  Impairment would obviously be much higher than the 41 % average for all persons with ANY Autism Spectrum Disorder.  

Perpetuating the myth that persons with autism disorders tend to be of high intelligence does not help the vast majority of those with classic Autistic Disorder who have Intellectual Disabilities.  It reflects a desire to disassociate autism from intellectual disability. Autism is seen as good or at least acceptable.  Intellectual Disability is seen as bad.

Perpetuating the myth of autism and high intelligence  stigmatizes those with autism and intellectual disability.