Amy Mackin is a writer and a blogger who writes at www.amymackin.com.  She is also the mother of an autistic child who she describes as high functioning in the Autism in the Shadows opinion piece she wrote for the Washington Post. Although here son is high functioning Ms. Mackin's article is an eloquent, direct and powerful statement about the invisible autistics, those who live at the severe end of the autism spectrum.  As the father of a 17 year old son who lives at the severe end of the autism spectrum I thank Amy MacKin for her concern for those with severe autism, those who are ignored and neglected (with some exceptions) by both the mainstream media AND by  autism research professionals.  Amy Mackin has spoken the truth about severe autism honestly and directly:

Thank you Amy Mackin. 

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. 

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.

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.

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? 

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:

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:

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. 

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.

While the depravity of this abuse may be unprecedented similar abuse has been reported in the past. Security cameras unknown to the abusers have been the most reliable way of bringing such abuse into the light of day. In 2007 in a New York group home a severely autistic woman was beaten by attendants, abuse which was only discovered by cameras.  These are incidents where cameras caught the abuse of persons with severe autism and intellectual challenges, persons who could not speak up for themselves. The odds are good that where those cameras are not present similar abuses will occur and will go unreported. 

Cameras are the only protection many severely challenged persons with autism will have and should be mandatory in all facilities and homes where care is provided for those who can not speak for themselves. Severe autism realities must not be ignored, can not be ignored. If we ignore these realities, if we fail to protect our loved ones who can not protect or speak up for themselves we are abandoning them to cruel fates. Steps must be taken to ensure they live in decent, safe conditions.

April 2, 2013 will feature another World Autism Awareness Day around the world.  Many blue lights will shine, politicians will pose and take credit for helping advance the cause of autistic persons and their families, countless media reports will talk about the gifts of autism and television series and movies alike will feature gifted individuals and autism, once again, will be portrayed for public consumption as the domain of brilliant if socially quirky personalities.  Little if anything will be said about the vast majority of those with autistic disorder who are limited by intellectual disability, or about  those who suffer from  obsessive behaviors, serious sensory issues, epilepsy and seizure activity, self injurious behavior, or spontaneous aggression in the form of property and furniture damage or even reactive, spontaneous aggression towards parents and caregivers. Of course nothing whatsoever will be said about the ultimate realities facing autistic children and their families.  We all age, our children become adults and the parents who care for their children grow old, feeble and .... deceased. When these events occur our severely affected autistic children will live out their time in various types of institutional arrangements including psychiatric hospitals ... if they are among the fortunate with any place to live.   

Feel free to keep shining your blue lights and repeating the words autism awareness until you are ... blue in the face. But please try to actually raise autism awareness by talking about the serious challenges facing those with autism symptoms and disorders from which they will suffer for the rest of their lives. 

Shine your blue lights but start being realistic. If you really care about some one with autism and want to help the and make positive changes start by telling the world the truth about autism.  Create some reality based autism awareness.

If you believe IACC Neurodiversity advocates  present and past,   Ari Ne'eman and Matthew Carey,  autism is not something that should be cured.  You won't see much about the harsher aspects of life with autism disorders if you read their writings. In their view autism is nothing more than a different way of thinking, not a ...  disorder ... or group of challenging symptoms for which cures are needed.

No, the enlightened  Neurodiversity thinkers who are selected to represent the mythical "autism community" at the IACC see autism in the image of the members of the ASAN Board of Directors, researchers who work with Dr. Laurent Mottron or successful entrepreneurs.  For them, and other ND True Believers,  autism's greatest horror occurs on those rare occasions when a media outlet like Slate presents a perspective of a parent whose child presents with autism, intellectual disability and seizures, to say nothing of serious self injurious behavior or unintended aggression toward family and others who actually care for them.

I was surprised today to see CNN present a video of a family using marijuana to alleviate their son's very serious self injury.  Below is the video as shown on KPTV 12 Portland, Oregon  showing some painful realities from the harsher, severe end of the autism spectrum, far away from the irrational ideology of the Neurodiversity advocates who misrepresent autism to the world:

Following is a video From Kim Oakley a gutsy, honest mother of a severely autistic son with epilepsy and author of the blog Autism, Epilepsy and Self-Injurious Behavior, also much different from the high functioning autism of  media stars,  academics and ASAN corporate directors:

Autism Specifics President "Aristotle" Newman and ASAN President Dr. Jerry Dobson will be jointly reflecting today on important events in the autism world during the past year.

1. First anniversary of DSM5.13  This year marked the first year since the DSM5 that a revised edition of the DSM5 has endured an entire year without being modified. Changes introduced by the classic, original DSM5 were revolutionary, particularly with the steps taken to exclude the intellectually disabled from the autism spectrum, but revisions were introduced periodically to deal with oversights in the classic edition.  Previous revisions of the DSM5 had seen repeated tinkering with the somewhat unclear Intellectual Disability exclusion language. With the DSM5.13 changes finally and clearly excluding anyone with an intellectual disability the latest revision has remained unchanged for a full year!

2. Autism Rising Debate Is Over. Some had argued that the frequent revisions to the DSM5 had rendered epidemiological studies useless in determining whether autism was really increasing or whether autism diagnoses were more numerous because of enhanced awareness.  While others did not hold to that view the debate became irrelevant as each revision created greater specific awareness of what really constitutes autism.  With each such revision the APA, Autism Specifics (formerly Autism Speaks) and ASAN all came to agree that since our knowledge of autism is now more specific there is just no point in fussing over whether it is increasing since we are after all starting over again in our understanding of autism.

3.  Autism Is Not A Disorder Debate Settled. With the latest revision to the DSM5, with the full and final exclusion of the intellectually disabled, we now clearly understand that autism is not now and never was a disorder or grouping of disorders or symptoms.  Autism, in the words of Saint Estee, is a Joy.  It is a culture of people with exceptional scientific, literary and artistic talents.  The old DSM5 language Autism Spectrum Disorder is now known as Autism Spectrum Culture.

4. Research and Treatment Update.  With the end of the constant search for causes of autism now that we know it is not a disorder the millions of dollars spent on genetic autism research and several thousand dollars spent on possible environmental causes of autism can be directed elsewhere.  Likewise treatment is unnecessary in the full realization that autism is not a disorder. These monies can now be directed to autism awareness projects celebrating our enhanced awareness of he Autistic Symphony.

5. End of the Aspergers Revolutionary War.   Another heated debate has ended with the end of the Aspergers Revolutionary War, the online struggle between those who fought the removal of the Aspergers Syndrome diagnosis from the DSM5 and those who thought it was part of a greater good.  With the full and final exclusion from the autism spectrum of the intellectually disabled the Asperger's Revolutionary Army members realized that Aspergers had not been removed at all, that autism as now defined is simply Aspergers with a new name: Autism Spectrum Culture.  As part of the peace treaty to end the war the AR Army warriors agreed with the APA, AS and ASAN to consider the possibility of renaming the Autism Spectrum Culture in the DSM5.14, changing it to Aspergers Spectrum Culture.