CBC News Misrepresents Autism By Omitting Any Reference to Intellectual Disability

In "The  new definition of autism" CBC News provides detailed descriptions of autism as represented by the five pervasive developmental  disorders in the DSM-IV and the Autism Spectrum Disorder in the now published DSM5.  With one major exception the article is a good summary of autism disorders pre and post DSM5. On another positive note the article expressly references ABA/IEBI as the primary evidence based intervention for autism treatment.  The major exception to this otherwise balanced, thorough article is the failure to mention, while describing conditions commonly associated with autism,  the substantial numbers of  persons with autism who also have an intellectual disability:

"What are some of the symptoms of ASD?

There is no single symptom that would lead to a diagnosis of autism. But someone who shows a number of the following characteristics and behaviours would likely be diagnosed with an ASD:

• Shows no interest in other people
• May be interested in people, but does not know how to talk, interact with or relate to them
• Has difficulty initiating and maintaining a conversation.
• Is slow developing speech and language skills, which may begin to develop and then be lost, or may never develop fully.
• Has difficulty interpreting non-verbal communication such as social distance cues, or the use of gestures and facial cues, like smiles, that most of us take for granted.
• Repeats ritualistic actions such as spinning, rocking, staring, finger flapping, and hitting oneself.
• Has restricted interests and seemingly odd habits, like focusing obsessively on only one thing, idea or activity.

As well, people with ASD may have secondary problems such as:

• Neurological disorders including epilepsy.
• Gastro-intestinal problems.
• Fine and gross motor deficits.
• Anxiety and depression.

Children with ASD develop motor, language, cognitive and social skills at different rates from other children their age. For instance, they may be very good at solving math problems but have great difficulty making friends or talking."

The only reference to intellectual or cognitive disabilities in the CBC News article is in the last paragraph above which implies that cognitive skills may develop at different rates in conjunction with other skills and immediately mentions possible strengths such as solving math problems.  This is not by any means a clear and accurate representation of the intellectual disability that is present in large numbers of persons with autism. 

The CDC in the United States has estimated the numbers of persons across the autism spectrum who also have intellectual disability in the range of 41-44%:

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

The CDC estimates are consistent with other estimates of the "co-morbidity" of autism and intellectual disability that I have posted links to on this site.

There is no legitimate reason to ignore the large numbers of persons with autism disorders who also have intellectual disabilities.  It is a relationship that should be explored and studied (La Malfa)  not hidden  and stigmatized.

Conor Goes For A Swim (and a Dive and a Slide) and Shows Terrific Progress In His Rhabdomyolysis Recovery

Conor home after a great swim adventure;

making terrific progress on his recovery

Conor's autism and profound developmental delay were supplemented by two grand mal seizures between November 2012 and April 2013.  The second seizure occurred two days after he began treatment with the anti seizure medication Lamotrogine.  During the second week of treatment when his dosage was increased from 1 to 2 25 mg tablets a day he began to sleep and medical advice was sought.  The specialists were not available quickly but our family doctor saw us early the next day and advised us to cut back on the dosage which we did.  Later that day though Conor still developed a rash and temperature and went to the emergency ward of the local hospital, the DECH.  He spent 6 days in the Intensive Care Unit and two weeks altogether in the hospital.  Conor's adverse reaction to his medication was diagnosed as Rhabdomyolysis a condition in which the muscles break down and release substances which pose great risk to the kidneys.  But Conor received excellent medical attention and was released to come home where he has continued to make made great progress.

We would like to take some credit for Conor's great recovery but the truth is he has led with his own initiative. Conor was jumping up off the couch even before he had his balance and we had to keep a close watch on him. This week Conor returned to school for part days.  His mobility and balance improved dramatically each day and this morning he went swimming at school for the first time since his hospital stay.  The plan was for Conor to go to the pool and sit in the hot tub.  Conor had none of that.  His aide informs us that instead  Conor walked down the accessibility ramp into the shallow end of the pool. He subsequently went to the  diving board where he jumped into the deep end and swam like a fish.  Conor also made for the giant slide where he climbed to the top and slid down.   

I couldn't have asked for a better present then to learn about Conor's swim adventure today.  6 days in the ICU with 5-6 tubes at a time sticking out of my buddy Conor seem  like a bad dream today.  Our Run Jump Fly Boy was flying today and we are happy, very happy.

DSM5 Autism Spectrum Disorder Has Arrived: Are Ari Ne'eman and John Elder Robison Still Autistic?

The DSM5 has been released and is now beginning to impact the world of autism.  Most discussion of the DSM5's New Autism Spectrum Disorder has ignored the effect of the language of mandatory criterion A which will act to exclude from autism diagnosis those with severe intellectual disability. Most of the discussion has focused on the potential exclusionary impact on those who would meet DSM-IV Asperger's criteria.  That being said the DSM5 autism team leaders have assured the high functioning end of the DSM-IV autism spectrum that those currently diagnosed with Asperger's or high functioning autism will not lose their diagnosis.  They will in effect be "grandfathered" in to the new autism spectrum. The answer to this commentary's title question is  therefore NO, Ne'eman and Robison, two very high functioning "Aspergians" will not lose their autism diagnoses.  

Although they will be grandfathered into the new DSM5 autism era will Ari Ne'eman and John Elder Robison and other  very, very high functioning "Aspergians" and "Autistics" remain as credible (in the eyes of mainstream media and Autism Speaks) spokespersons for persons at all points on the DSM5 autism spectrum?  Will persons who routinely appear in high profile media interviews before the Washington press gallery, New York magazines, CNN, CBC, BBC, run successful businesses, establish corporate entities, sit on the boards of directors, participate in IACC meetings  and in some cases raise families be able to speak on behalf of those who meet mandatory  Criterion D of the DSM5 New Autism Spectrum Disorder which states that the social communication and restrictive repetitive symptoms together limit and impair daily functioning?  Can the corporate directors of the ASAN corporate entity, including those with professional and academic backgrounds and some with families, claim to be limited and impaired in their daily functioning in any meaningful way? 

The real answer is that it doesn't matter if they would meet DSM5 autism criterion D.   Convenience is the reason that researchers have so often excluded those with severe autism and cognitive challenges from their studies.  Researchers, like the media, need very high functioning participants and interview subjects to do their autism focused work and earn their pay cheques. Robison and Ne'eman's careers as autism spokespersons/"self" advocates are safe.  Persons at the more severe end of the autism spectrum will remain invisible, hidden from sight, and excluded from research,  while high functioning "self" advocates speak on their behalf.

Conor's Physiotherapy With CBC's Terry Seguin

Conor is still recovering from Rhabdomyolysis, an adverse reaction to anti-seizure medication, Lamotrogine and needs phsyiotherapy to rebuild his damaged muscles, balance and co-ordination.  Just being home is a huge help for Conor, back home with Mom, Dad, his brother and his familiar routines.  One of those routines has been to get out of bed every morning at 6 am.  If he is awake at 5:30 he stays in bed until 6. That is his routine and Conor has a classic autism need for routine.  When he gets up each morning his routine has also included turning on the television and watching  "CBC Terry Seguin".   

Conor has been sleeping on a living room couch since his return so I could be nearby on our other couch to keep an eye on him in case he was in distress. This morning I was in the adjacent kitchen when I heard some loud walking noises in the living room and went in to find that Conor had walked from the living room to the television to turn on CBC Terry Seguin.  Conor has been very wobbly on his feet and he has a long way to go towards recovery so I was startled to see him at our big screen TV.  I was happy though that he had done so without falling and hurting himself. It was a sure sign of progress in his recovery.  His CBC Terry Seguin television walk demonstrated improvement physically and showed that Conor will not stay down, he will keep walking until he is fully recovered.  Two thumbs up for Conor ... and for Terry Seguin!

Unthinking Autism Guide Shannon Rosa Attacks Autism Parents .... AGAIN.

Shannon  Rosa, with the Twitter help of Seth Mnookin and Dr. Jon Brock is at it again, misrepresenting autism disorders and the state of knowledge about autism causation and of course blaming autism parents fighting for their children for the latest report of a professional caregiver abusing an autistic child because they dare talk honestly about the negative aspects of autism DISORDERS :

"At their worst, negative media-sown autism messages influence people like Greg Simard, who brutally beat a 12-year-old, non-speaking autistic boy in his care. Simard justified his actions by saying of the boy, .... Some autism parents never find their way out of that initial horror and negativity, .... These parents see other autistics writing, speaking, participating in online communities, and their furor increases -- how dare those autistics say good things about autism, when their kids need 24 hour supervision?"

Ms. Rosa's wild, hostile opinions are not substantiated by evidence or professional consensus of any kind but that doesn't stop Mnookin and Brock  from spreading her hateful messages.  In the instant case there is no basis whatsoever to the claim that the media focuses on negative stereotpyes or that it does so because of  bad autism parents.  Temple Grandin is celebrated around the world.  John Elder Robison and son Cubby regularly receive promotion on CNN.  Television series inevitably portray autism in the form of the socially awkward but otherwise brilliant, high functioning techie, geek syndrome as autism. 

Rosa's claim that the abusive caregiver is influenced by the alleged overwhelming dominance of negative media stories is absurd and, once again, based on no evidence whatsoever. An abuser makes a cheap comment in the media and Rosa accepts it as reality because, in her mind, it confirms her negative views of other autism parents who do not share her views. This is no accident.  A mother in Colorado killed her autistic child and stated that she did so because she feared the child was autistic.  Rosa leaped to the attack against autism parents speaking honestly about their children's autism disorders blaming them for the mother's actions. What Rosa bypassed in her attack  was the fact that the prosecution had concluded that the woman was insane and for that reason did not prosecute her. 

I am not going to repeat all of Rosa's misinformation about autism on this site.  Her statements of fact are in fact simply her opinions, opinions that reflect her hostility towards autism parents who fight to improve their childrens' life prospects by speaking honestly in the effort to find autism causes, cures, treatments and services  for their children.  These parents, and I consider myself one of them, do not conform to Rosa's angry .... and flat out silly ... mischaracterizations.

While Rosa is out with her non evidence based rants about autism disorders and parents fighting for their autistic kids here is a bit of autism reality from the New England Journal of Medicine, the kind of stuff Rosa doesn't want the world to know about:

"Genomics, Intellectual Disability, and Autism

"Autism spectrum disorders have been estimated to affect as many as 1 in 100 to 1 in 150 children.4,5 Disorders on the autism spectrum share features of impaired social relationships, impaired language and communication, and repetitive behaviors or a narrow range of interests. Many children with autism spectrum disorders also have intellectual disability, and approximately 75% have lifelong disability requiring substantial social and educational support. Thus, autism and intellectual disability together represent an important health burden in the population and are frequent reasons for referral to genetics and developmental pediatrics clinics for a diagnostic workup."

Prediction: the next similar tragedy that befalls an autistic child will also be blamed by Rosa on other autism parents with whom she disagrees.  Her views will unfortunately be promoted by the Mnookins,  Brocks and other professional and academic Neurodiversity subscribers.  Thinking Persons Guide to Autism? Not even close.

Conor Is Home From the Hospital!

Above Conor, and Mom, in the bottom pic,  on the way home.

Conor's Mom stayed at the hospital with him 24/7,  for 2 weeks

Dad spelled her off at times and the nursing students also sat

with Conor and gave Mom some breaks once he was moved

from the Intensive Care Unit to a room in Pediatrics.

In the grainy pic below (taken in dark lighting) Conor rests

at home on one of our living room cozy couches.

Conor is home! After 2 weeks in the hospital, including 6 days in intensive care, it feels great to have our buddy home with us. Yesterday I told Conor I would be back at 8 am this morning to take him home.  I arrived at 7:55 am and Conor Was waiting in the door way of his room ready to go home.

We really didn't know for the first few days if he would survive.  His negative reaction to the anti-seizure medication Lamotrogine resulted in a condition called Rhabdomyolysis which is as bad as it sounds.  Essentially, as I understand it the muscles break down and can cause renal (kidney) failure.

Conor is home now, safe and healthy. We all have lots of work ahead doing phsyio  with Conor as he recovers strength and coordination. Conor has shown substantial improvement each of the last several days and we are very optimistic that our Run, Jump, Fly boy will be back before too long. 

There are many, many people to thank for Conor's well being today. There are literally so many: all the hospital medical, nursing and support staff, our family doctor, people who know and work with Conor at school who visited with him in the hospital,  family friends and Conor's brother Brandon who was a big help at home and at the hospital on visits. 

We are happy, very, very happy to have our buddy home with us. Today is a great day in the Doherty home.

Dr. Tom Insel's Shameful DSM Retreat

Left - Transforming Diagnosis Insel


Right - NIMH Is Not Abandoning the DSM Insel.

In Transforming Diagnosis NIMH Director Thomas Insel said that the DSM was invalid, based on an antiquated system of diagnosis and .... patients deserve better.   Then he retreated, tried to hide and claimed that people were misrepresenting the Transforming Diagnosis article, that the NIMH was just talking about research not clinical practice. Last I checked Diagnosis is a key part of a medical clinical practice. If you are talking about participants or subjects you are talking about research.  If you are talking about patients who deserve better you are talking about clinical practice.  If you say that the DSM is invalid and antiquated you are not supporting the DSM, you are blowing it up.

You can run Dr. Tom but you can't hide.  Your words, your Transforming Diagnosis article are out there in the public domain.  Patients deserve a medical diagnosis based on research.  You said it and I believe it.  I don't believe the excuses offered in your shameful retreat.

Adult Autism Care in New Brunswick: An Open Letter to Premier David Alward

 

May 6, 2013

Honourable Premier David Alward

Respected Cabinet Ministers and Party Leaders

Dear Premier Alward

I am the Acting President of the Autism Society New Brunswick  and a parent that was involved, with many  other parents, in the advocacy that led to the establishment of the UNB-CEL autism intervention training program, the provision of early autism intervention to children aged 2-5, UNB-CEL  autism specific training of Education Aides and Resource Teachers and the reversal of the decision to close the Stan Cassidy Center tertiary care autism team. We also argued with some modest success for an evidence based, student centered, definition of inclusive education. We have been less successful in advocating for  a continuum of placement options to accommodate the varied, complex needs of autistic students although individualized instruction does continue in some schools. 

 

Autism successes in New Brunswick have resulted from many factors including access to sound, knowledgeable, professional advice that oriented us toward evidence based, scientific goals to assist our children's very challenging needs and responsive  leadership in the Lord and Graham governments.  Despite these gains, which are in need of further refinement and advancement,  we must, with sorrow, shame, and fear, acknowledge that  we have to date failed to see any substantial improvements in services  for New Brunswick adults with autism disorders. That failure, like the aforementioned successes, must be shared by parent advocates and government decision makers.

 

Several news agencies have highlighted events in Ontario where parents left their 19 year old severely autistic son with a government office because they were unable to continue providing him with the necessary level of care.  Many New Brunswick parents including me, and my wife, have also long feared that day. That fear grows stronger with each year of non action, each year of failure to address seriously the needs of autistic adults across the autism spectrum. 

 

Many parents in New Brunswick seek meaningful assistance to help care for their adult autistic children in their homes.  Obviously at some point parents grow too old or exhausted and ultimately become enfeebled and pass on. We do so  with the knowledge that no credible, comprehensive autism care system is in place to care for our adult autistic children who require assistance when we can no longer help them.  Moderately to severely autistic and intellectually challenged autistic adult children will face serious difficulty living in group homes with untrained staff and non existent educational and social options.  Our most severely affected autistic adults will live in the Restigouche Regional Hospital psychiatric unit or in facilities out of  province like the Spurwink facility in Maine. 

 

Money is always an issue in government decision making and that is understood by all.  However, the failed group home system that exists in NB   also carries costs such as placements in Spurwink Maine at several hundred thousand dollars a year per individual.  Money is part of the problem but so too is the overwhelming dominance of the "community"philosophy in the mindsets of NB's public decision makers.  There is no question that those who have promoted the community/inclusion model in NB have made very substantial contributions to the lives of most persons with disabilities in our province but  the dominance of their beliefs, and the rigidity with which they are maintained, precludes the development of evidence based alternatives and prohibits the development of a facility that can provide permanent residential care and treatment for those with severe autism and co-morbid disorder challenges.  

 

Autistic residents of group homes have been charged with assault when in conflict with untrained staff.  An autistic youth was housed temporarily on the grounds of the Miramichi correctional facility and at least two New Brunswick residents with autism have been sent to Spurwink in neighboring Maine.  We do not have a modern, professional,  permanent residential care and treatment facility for adult New Brunswickers with severe autism in large part because of the rigid adherence to a decades old philosophy that simply ignores contrary evidence including those persons who are sent to psychiatric and general hospital wards, out of province facilities and correctional facilities to spend their lives.  Public events to discuss disability policies and service requirements are typically organized in pre-arranged "table discussion" formats that prevent serious open discussion of contentious issues.

 

Over the last decade the Autism Society New Brunswick advocated for a continuum of residential care and treatment options to provide for our autistic adult children.  Three years ago, during the 2010 provincial election,  UNB Professor Emeritus (Psychology) and practicing clinical psychologist Paul McDonnell articulated in a CBC interview the concept of a continuum or network of residential care and treatment center.  Professor McDonnell spoke of the need for a modern adult autism residential care and treatment system in New Brunswick with a center that would provide residential care and treatment for those severely affected by autism, a center that could also assist in the training and service provision in group homes and facilities in communities around the province.  The center would be a modern facility that could provide educational and social elements in the lives of severely autistic adults. No progress has been made in moving towards such a home grown solution notwithstanding the international recognition that NB received for its successful UNB-CEL early intervention autism training program.

 

On behalf of the Autism Society New Brunswick, and parents of autistic children and adults, I ask you Mr. Premier to commit to the modern, professional system of adult autism residential care  articulated by Professor McDonnell.  An adult autism residential care and treatment facility based in Fredericton, with professional administration, trained staff, evidence based treatment,  education and social programs for the residents is needed.  An autism center would  provide desperately needed  permanent residency for the most severely affected by autism disorders, training and advice for staff in community based group homes, and assistance for parents whose adult children are still living with them.  The Fredericton location would be centrally located and in close proximity to other New Brunswick autism successes and expertise at UNB and the Stan Cassidy Center.  

 

Much time has passed with no serious response to our calls to address the needs of autistic adults. There has been no progress to date. Hopefully that will now change and work can begin as soon as possible on the development of an autism residential care and treatment facility.

  

Respectfully,

Harold L Doherty

Fredericton

cc. ASNB

      media

Conor Is Safe Now But We Almost Lost Our Buddy: THANK YOU To ALL Who Saved Him!

In mid-April, pursuant to a neurologist's advice, we started Conor on Lamotrogine, an anti-eleptic drug which is reputed to have benefited many people suffering from seizure activity.  Hours after receiving his third dosage Conor suffered his second Grand Mal seizure, that we know of, since his first in November 2012.  Last week he became extremely drowsy and last Friday April 26, 2013, our family doctor recommended we reduce the dosage (the neurologist is out of town until May 13, 2013). Later, early Friday evening Conor's condition worsened noticeably and a rash had developed.  Rash development is a known warning sign of a negative Lamotrogine reaction and Conor was taken to the DECH (Doctor Everett Chalmers Hospital) emergency where he received immediate attention and transferred to the Intensive Care Unit, the ICU.  Conor's reactions have been very serious with risks in several key categories including risk to his kidneys and liver. Thanks to our family doctor and the excellent care and attention of the Emergency and ICU personnel our Buddy is still with us. Without their help he probably would not be.  Conor is still in the ICU but is expected to transfer to pediatrics in the next day or two. He has improved dramatically.  

To everyone involved with protecting and saving our buddy Conor his Mom and Dad say THANK YOU VERY MUCH, THANK YOU!

PS. We can hardly wait for the phsyio and other necessary recovery interventions to give us back our Run, Jump, Fly Boy:

Autism, Grand Mal Seizures, Meds: Conor Needs Some Kermit Komfort!

Conor enjoys some Kermit Komfort this morning while sleeping and awaiting a trip to see our family physician.  It has been a very difficult week for my Buddy as we work through his seizure and medication issues. Hoping things turn for the better today!

Autism and the Natural Environment: Conor Celebrates Earth Day Every Day

Today is Earth Day! Conor celebrated yesterday with some Run, Jump, Fly fun on the North Riverfront Trail here in Fredericton, New Brunswick, Canada.  We try to get outdoors and celebrate our natural environment with Conor every day, every chance we get. 

Autism Rising? Not According to Behavior Analyst Steve Taylor Who Proclaims That Autism Is 100% Genetic In Origin

Since my son was diagnosed with Autistic Disorder in 1998 the rates of diagnosed autism have risen dramatically from 1 in 500 to the current estimated rate of 1 in 88.  There is common acknowledgement that a substantial increase resulted from the DSM-IV changes which pushed acceptance of Aspergers as part of an autism spectrum.  Social factors such as increased awareness and availability of services under an autism label have also been cited.  Some purported autism experts  though have concluded that the dramatic autism increases are entirely attributable to diagnostic changes, increased awareness and the desirability for service reasons of an autism diagnosis. One such  autism expert is Behavior Analyst Steve Taylor who proclaims  in the Modesto Bee that "Autism isn't spreading, but the diagnosis is". 

The dramatic increases have also taken place during years when genetic autism research received an overwhelming share of the autism research dollar. Calls for increased funding for environmental autism research by respected researchers like Hertz-Picciotto, Pessah, Landrigan, Birnbaum and others have not  tilted the balance dramatically away from the "its gotta be genetic mindset".  No study proving that the overwhelming increase in autism disorders is caused entirely by diagnostic change and increased social awareness has been produced.  No study producing a genetic explanation for all or even a significant number of autism disorders has been produced.  Very few environmental autism studies have been funded compared to genetic studies and yet the Steve Taylors of the expert autism community claim that there is no real increase at all.  

As they did with the refrigerator mothers theory of autism a few decades ago many of the world's autism "experts" embrace as an article of faith that autism isn't increasing.  Once again too the finger is pointed, at least in part, at parents ..... this time it is parents seeking services for their children as stated by Taylor in the  Modesto Bee:

"I'm still working with the same kind of kids, but everyone today seems to have autism. I met an area family for the first time recently and the 3-year-old I was there to help looked me in the eye and told me, "Go home." He's got autism, now.

No one can diagnose a complex disorder from a single interaction, but I'm going to spend months and maybe years working with this family to change behaviors that this rude boy would likely grow out of and, despite my best efforts, maybe make it worse.

For pure and understandable motives, parents still lobby for the diagnosis. An autism diagnosis brings more services.

The Stanislaus County Office of Education lists three pre-formal diagnostic (too young to diagnose) intensive classes of six to eight students as well as five elementary autism classes, which come with two full-time autism specialists.

A student with the same delays but not diagnosed as autistic doesn't usually get that kind of specialized support."

The only way Steve Taylor and the autism epidemic deniers could possibly be sure that the increases in autism rates are not real AT ALL is if autism disorders are not caused or contributed to by any environmental factors; that autism is entirely genetic in origin. Taylor is a true believer that autism is not increasing; that autism is 100% genetic in origin.  For those of us who lack Taylor's brilliant insights into the causes of autism we will have to wait for studies that actually provide evidence in support of his belief that autism rates are not really increasing at all.

Read more here: http://www.modbee.com/2013/04/18/2676742/autism-isnt-spreading-but-the.html#storylink=cpy

Mother Of An Autistic Son Asks Autism Speaks for Some Actual Autism Awareness

The following commentary  is from the blog Muslimah Next Door  written by Dishad Ali. It addresses an issue that I have raised several times - the lack of real autism awareness created by autism awareness events. The author's comments at Muslimah Next Door under the title When an Autism Awareness Event is Anything But are followed by a letter from  Harshita Mahajan the mother of a teenage autistic son addressed to Autism Speaks.  I sincerely hope that Autism Speaks takes the mother's concerns, and the contents of her letter, seriously and begins to provide during autism awareness events awareness of the realities of autism disorders including some of the challenges presented by autism mild and severe. 

"We’ve hit the middle of April, and while there was a flurry of focus on autism at the start of the month, it still is very much “Autism Awareness Month.” Awareness events sponsored by local and national organizations continue to occur across the United States, but sometimes I wonder how much real “awareness” is actually happening? How many of these events just serve as fundraisers for the organizations sponsoring it?

Fundraising is not bad, and of course autism organizations must capitalize on the attention garnered in this month. But, if you’re going to frame event as “autism awareness,” then there be some education happening to make people “aware” of what autism is, what it entails, how it can be manifested. (Unless it is a closed event just for the autism community) There better be autism ambassadors at these events making sure things go as smooth as possible for those with autism (and without) who attend said events.

My friend Harshita Mahajan took her autistic teenage son Sahil to an autism awareness event recently sponsored by Autism Speaks, at which her son had a lapse of self-control. What happened after that was upsetting and resulted with Harshita leaving with her son. For this to happen at an autism awareness event – well the irony is not lost on me. Read her story. Share it. Let’s make sure events advertised as being about ”autism awareness” educate people, not just fundraise."

I encourage anyone interested in autism disorders to read the letter by Harshita Mahajan as posted on the Muslimah Next Door blog under the commentary When an Autism Awareness Event is Anything But.

Autism and Seizures: Conor's Second Grand Mal Seizure (That We Know Of)

The pictures above were initially posted on this site on May 26, 2012, several months before Conor's 1st known Grand Mal Seizure in November. As I posted then, external conditions were perfect and Conor was enjoying a favorite activity in a favorite location when he suddenly began hitting himself in the head. I don't  know what caused it, Conor lacks the communication skills to explain, but it was definitely internal. Together with many similar circumstances including sudden closing of his eyes and looking blankly into the distance I reported them to his pediatrician as possible seizure activities. The pediatrician did not disagree but did not want to provide medication in the absence of any falling behaviors. Two Grand Mal seizures later and a visit to a neurologist and Conor is just now starting on medication which will hopefuly reduce seizure activity.  

My autistic son's second Grand Mal seizure, of which I am aware, happened when I was in an adjacent room less than 15 feet away this past Sunday. I heard the noises when his seizure began and recognized them this time for what they were. I jumped up immediately, laid him on his side and cushioned his head while his Mom called the excellent 911 emergency responders who took Conor to the local hospital, the DECH, for the excellent care and attention they have have always provided members of our family. (Including me during my recent hospitalization for a major asthma attack). 

 I was scared this past November when Conor suffered his first Grand Mal seizure. I was just as scared this second time. I can't believe that this can happen repeatedly without serious life threatening consequences especially if no one hears him during the night, or if it happens during swimming which he dearly loves. Conor was seen by a neurologist just 4 days earlier and we had, after some base line blood tests were done, started on the low dose end of a progressively heavier medication schedule. Hopefully as the dosage is increased and has time to take effect the seizures will cease. 

Autism, as portrayed by most autism "awareness" groups, is far removed from the reality of severe autism with intellectual disability and sezures/epilepsy. I know it and the APA wizards who contrived the DSM5 ASD know it. Life will be easier for them and the researchers who conduct autism research while excluding those with intellectual disability, a trend which they have followed for many years and which is now condoned by the DSM5. The difficult conditions that are usually found with the severely autistic and make life difficult for autism researchers and clinicians ... intellectual disability, self injurious behaviors and seizures will be reduced substantially by being relegated to the invisible category of intellectual disability in the DSM5. 

I look at the multitude of "autism" studies on Google Scholar and have no idea what most of them involve in terms of autism as a disorder or the serious conditions which are related to the severe forms of autism. I do know that very few of them address the severe realities faced by my son. I do know that when the APA spends several years "recompartmentalizing" the diagnostic criteria for autism and epilepsy to come up with the DSM5 ASD they are doing no one with severe autism any favors. Their efforts and funds would serve a far better purpose if they followed the lead of the emergency responders and hospital staff at the DECH who have treated Conor and cared for him so well. Focus on helping people with autism, particularly those most in need, and save the idle academic curiosity "autism" studies for your retirement.

Blood Tests and Autism: Conor and the DECH Both Did Very Well Today! Thank You Very Much!

Our entire family has had nothing but good experiences at the Doctor Everett Chalmers Hospital, the "DECH", in Fredericton and that trend continued this morning when we took Conor for blood tests at 7 am.  The tests were required by the consulting neurologist to establish some base lines before starting some new medications to address Conor's seizure activities.  We contacted the DECH yesterday to see if they could accommodate Conor with a direct entry to the blood works room without taking a number and waiting in line. We explained his autism, intellectual disability and tendency to have meltdowns when frustrated. The administrative staff were happy to oblige and the team that met us this morning were outstanding!  They knew exactly how to interact well with Conor and everything went perfect!  

Conor did well, very well, today and so did the DECH staff to whom we say, once again, Thank You!

Autism Severity: Verbal Communication Doesn't Count? Crows Say Otherwise!

Photos by Harold L Doherty

One of the more irrational features in some autism discussions is the claim that being non verbal is not a significant indicator of autism severity.  Anyone who thinks that  verbal communication is not a significant factor in daily functioning is fooling themselves.   Communication is important for humans as it is for birds.  Crows are often reputed to be the smartest bird species and YouTube abounds with clever activities of crows. Anyone who has walked in areas populated by these very smart birds has heard the loud oral communication that goes on between these marvelous, high functioning creatures.  

As with crows, so too with people, oral communication is important in daily functioning and the absence of oral communication abilities is a serious deficit in daily functioning.  My son has severe autistic disorder and limited communication.  His lack of communication ability seriously limits his everyday life.

CNN's Very High Functioning Autism Awareness Efforts Misrepresent Autism Disorders

CNN's Portrayal of Autism In the Days Surrounding WAAD 2013

Middle - Jack and John Elder Robison - High Functioning Aspergers

Bottom -Trevor Pacelli High Functioning PDD-NOS (Holli Dunn Photography)

To no big surprise successful, very high functioning Asperger's businsessman, author and family man John Elder Robison's new book Bringing Up Cubby has benefited from two high profile interview promotions on CNN. A promotional appearance with his son on Dr. Sanjay Gupta's Sunday show was followed with a gushing interview on the CNN morning show Early Start. CNN, and its in house neurosurgeon Dr. Sanjay Gupta, have long delighted in interviewing very intelligent persons with autism.

Neither of these interviews enlightened the world about the realities faced by those less fortunate than the Aspergers family Robison, those with severe autistic disorder. There was discussion of not having a lot of friends but no discussion of intellectual disabilities, serious self injurious behaviors, children wandering, sometimes with dangerous consequences, far from family or schools, the challenges of severely autistic children in schools or in finding a place to live when their parents grow old and ultimately become deceased.

CNN's autism awareness effort wasn't restricted to promoting very high functioning businessman John Elder Robison's literary career. It also assisted in kick starting the career of yet another very high functioning person with autism. The CNN obsession with high functioning autism continued  with a special to CNN article by Trevor Pacelli self described as a high functioning individual with PDD-NOS. Below his Holli Dunn Photography picture it states that: "Trevor Pacelli, 20, maintains a 3.6 GPA at community college and has been accepted to five universities."

Several years ago CNN afforded several episodes to the Amanda Baggs story, portraying her as low functioning. Subsequent to the CNN-Baggs collaborations several former acquaintances of Baggs, who attended the same private school for gifted youths, as she had attended came forward on the internet to describe her as a highly verbal, creative individual with normal functioning abilities.

I am not suggesting that CNN or Dr. Sanjay Gupta intentionally misrepresent autism to enhance ratings and profits. I recognize that Dr. Gupta has a busy schedule and it would not be easy for him and his crew to visit a facility caring for children, youth or adults with severe autism disorders.   I am simply stating that, for whatever reasons, Dr. Sanjay Gupta and CNN present misrepresent autism to the world by repeatedly featuring high functioning persons with autism.

Obviously Dr. Gupta and CNN are not alone in portraying high functioning autism as representing the entire autism spectrum.  Autism Speaks engages in the same exercise with  very high functioning  John Elder Robison and high functioning Alex Plank and tends to downplay intellectual disability and other inconvenient severe realities facing many with autistic disorder.

Autism fund raising power houses and major mainstream media alike misrepresent autism to the world painting a picture of autism as gifted, shy individuals while ignoring the harsher realities facing those on the severe end of the autism spectrum.

This misrepresentation provides cover for governments in funding autism research and  in providing services for those with severe autism disorders: why waste dollars researching or providing services for a disorder that appears not to be a disorder after all? 

Autism Speaks Reluctantly Confesses: 40% Of Persons On Autism Spectrum Have Intellectual Disability

Intellectual Disability remains the Elephant in the Autism 

Living Room;no one wants to admit it's there or to talk about it

It is politically incorrect in today's autism world to acknowledge the existence of the invisible autistics, the one's unlike Ari Ne'eman, John Elder Robison, Alex Plank and  Michelle Dawson all of who whom have enjoyed great success and demonstrate considerable intelligence and most of whom have never met a television camera or gathering of journalists that offends them. Some of the extremely high functioning superstars of autism "self" advocacy have literally built careers telling the world what it means to be "autistic".   Meanwhile those with intellectual disability who constituted autism's "vast majority" prior to the DSM-IV expansion of the pervasive developmental disorder category to include Aspergers remain invisible and unmentionable in polite, successful autism circles:

"But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC. For example, it now includes Asperger syndrome, where the sufferer is socially impaired, but experiences typical language development.

Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."

CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp 

Against that background I must give some slight praise to Autism Speaks for daring to mention, albeit hidden deep in  the FAQ section, carefully book ended by reference to autistic savant skills and those with normal to above average intelligence, that, Oh My Gosh,  40% of persons on the autism spectrum have an intellectual disability:

What Does it Mean to Be “On the Spectrum”? 

 Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have intellectual disability (IQ less than 70), and many have normal to above average intelligence. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently.

Autism Speaks, like the APA committee that drafted the DSM5 autism criteria to exclude the most severely intellectually disabled from an autism diagonosis even if they meet all the specific criteria for an autism spectrum disorder, does not wish to openly speak the truth: intellectual disability is not just a co-morbid or coincidental disorder that just happens to be present in the vast majority  of cases of classic autistic disorder. It is for the original vast majority a description of their  developmental deficits, while those with Aspergers do not have intellectual or language deficits most of those with Autistic Disorder do.  The intellectual disability is a feature of their autism disorder whether extremely high functioning Aspergers self advocates, fund raising entities like Autism Speaks or even the APA wish to acknowledge it.  

There is no reason to artificially separate the intellectual disability from the "autism" symptoms.  There is no scientific basis for doing so and it is morally and ethically wrong to do so.   

It is scientifically unsound to hide the reality that intellectual disability is an integral part of autistic disorder.  It is just as immoral and unethical to hide that reality, to pretend that intellectually disabled are not truly autistic as it would be to pretend that persons of different racial, gender characteristics or sexual orientations do not count as full human beings. 

World Autism Awareness Day 2014

If past is prologue very little awareness of the harsher realities of autism symptoms will be generated on this WAAD, April 2, 2013.  Next year, in 2014,  and for years thereafter, the streamlined DSM5 autism will also eliminate many on the very high functioning and low functioning ends of the autism spectrum. 

It is unfortunate that in the DSM5 Autism Spectrum Disorder definition the American Psychiatric Association is revising the medical definition of autism spectrum disorder in ways that are expected to change its diagnostic characteristics. There is no good reason to wreck havoc on autism research and diagnosis by redefining yet again what we are talking about when we say "autism".  

The autism disorder picture, already muddied and muddled by "self" advocates and others who promote autism as a blessing,  will have even less real meaning as the APA, without any scientific or ethical reason, eliminates the most severe cases of autism from future diagnosis. Autism research, already challenged by previous DSM definition changes and alleged increased awareness, will become increasingly challenged.  

The actions of the APA in redefining autism in the DSM5 reflect the intellectual biases of the APA drafters, are in breach of the "first do no harm" principle and  are unethical. Be aware of that on this World Autism Awareness Day 2013 and prepare for a new autism on WAAD 2014, one that will look much different than the autism about which the world is expected to become more aware today.

Canada's World Autism Awareness Day Act: Great Preamble, Zero Action

On November 1, 2012 Canada passed An Act respecting World Autism Awareness Day an Act with a great preamble which provides for absolutely no action to ensure that effective evidence based early intervention for autism would be provided to all Canadian families affected by autism spectrum disorders.  

Talk, and rhetoric, is cheap.  Intervention is not. Failure to provide intervention and services is not cheap.   The human and financial costs of failing to take effective autism action continue to rise across Canada. 

60-61 ELIZABETH II

——————

CHAPTER 21

An Act respecting World Autism Awareness Day

[Assented to 1st November, 2012]

Whereas autism spectrum disorders affect a significant number of families in Canada;

Whereas Canada has a health care system and social safety net to prevent illness and serve citizens;

Whereas Canadian families affected by autism spectrum disorders have unequal access to services across the country;

Whereas worldwide the number of diagnoses of autism spectrum disorders is growing;

Whereas a greater awareness of the importance of early diagnosis and treatment for people with autism is required to engage more Canadians in helping their fellow citizens;

Whereas early intervention in the treatment of autism spectrum disorders can have promising results and help people engage with and contribute to society;

Whereas there is no known cause or cure for autism spectrum disorders;

Whereas 192 United Nations representatives agreed that World Autism Awareness Day would draw the attention of people across the globe to this neurological disorder that is affecting an increasing number of families;

Whereas in 2007 the United Nations General Assembly designated April 2, from 2008 on, as World Autism Awareness Day;

Whereas Canada is a signatory to the United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities, which maintain that children with disabilities should enjoy a full and decent life in conditions that ensure dignity, promote self-reliance and facilitate their active participation in the community, while also enjoying all human rights and fundamental freedoms on an equal basis with other children;

And whereas Canada is a member of the United Nations and supports the work of this vital international organization;

Now, therefore, Her Majesty, by and with the advice and consent of the Senate and House of Commons of Canada, enacts as follows:

SHORT TITLE

Short title

1. This Act may be cited as the World Autism Awareness Day Act.

WORLD AUTISM AWARENESS DAY

World Autism Awareness Day

2. Throughout Canada, in each and every year, the second day of April shall be known as “World Autism Awareness Day”.

Published under authority of the Senate of Canada