ASPERGER MARRIAGE: WHAT DOES AUTISM SPECTRUM MEAN?

It means the professionals are FAILING US

This is a rant about how the DSM-5 has effectively damaged the progress that was being made to develop better identification, diagnosis, and treatment practices for those with Asperger’s syndrome (particularly adults).  

I have chosen to share some personal opinions about the new diagnostic term: Autism Spectrum Disorder (in great length) and explore some seemingly questionable motives that I strongly believe motivated the diagnostic shift and the media shit-storm of paranoia that followed…   

understanding-professional-negligence (2)

“Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.”  – Autism Speaks Inc.

First; A BIG SHOUT OUT to the negligent professionals who chose to chuck Asperger’s syndrome/disorder into the diagnostic category of Autism Spectrum Disorder!

No seriously; I have a big fat THANK YOU to send your way for effectively destroying the hope of finding a skilled therapist to ever help my marriage or the many others like mine.

THANK YOU from all of the couples out there who possess all of the love needed to make their marriage work… but could have used the intelligence of your specific field of study to learn to effectively communicate with one another.

Oh, and please forgive me for not first mentioning all of the children currently reaching adolescence that you have also likely SCREWED out of a happy and healthy future.

“The experts’ motives are pure, but their awareness of risks is often naive. Psychiatry should not be in the business of inadvertently manufacturing mental disorders.” Allen Frances, M.D

Why the hostility?

Listen, I am all for the advancement of modern medicine and the continuous reevaluation of the way we diagnose and treat mental health conditions.  I commend the individuals who contributed to the updated Diagnostic and Statistical Manual of Mental Disorders (DSM-5) for their hard work and dedication toward propelling the field of psychiatric medicine into what they believed were more appropriately diagnosable terms (if I believe that).  This (I assume) was done to enable funding from insurance companies and placement in appropriate education and treatment programs for the individual affected and decrease incorrect diagnoses.  I actually am not assuming any of this, but taking it directly from the information available via the American Psychiatric Association (APA) website, which also pays mention to the fact that their collaborative effort to categorize disorders in a new way will ease the legwork in appropriating funds for future research (APA, 2016).

Many of the changes in DSM-5 were made to better characterize symptoms and behaviors of groups of people who are currently seeking clinical help but whose symptoms are not well defined by DSM-IV (meaning they are less likely to have access to treatment). Our hope is that by more accurately defining disorders, diagnosis and clinical care will be improved and new research will be facilitated to further our understanding of mental disorders. For highlights of the changes, please visit: www.psychiatry.org/dsm5

The problem with this “brilliantly premature” decision to structure the DSM-5 in an entirely different manner than the previous edition (and those that came before) is that it is a complete crock of SH*T (to put it nicely).  The new grouping of disorders is based on a grandiose theory that they are biologically related.  These ideas haven’t the scientific data to back them enough to positively alter the course of diagnosis and treatment for the individual lives that are now affected.  The DSM-5 is the brain-child of medical doctors (I will back this momentarily) who took a Hippocratic Oath to “utterly reject harm or mischief” in other words, FIRST DO NO HARM.

I write this post today because I am absolutely beside myself with disgust over how in the name of “progress” these professionals managed to completely annihilate Asperger’s syndrome/disorder from the DSM altogether and cause unimaginable harm to countless human lives.  On what planet can taking a giant leap BACKWARDS be deemed progressive, and how in the world did over seven decades (Yes, SEVENTY YEARS), get dumped because it was “agreed upon” that it would just be easier that way?

How did I come to the conclusion that this was done, not because Aspergers belonged in the ASD category, but because it was simply easier for the professionals to place it there?  Well, let’s honestly dig our heels into the data and educate ourselves on how this came to fruition.

 

The DSM-5 Task Force

Beginning in 1999, a “task force” was being developed (in its infancy) to begin looking at what changes the DSM-IV may require in the future.  There were countless amounts of studies and clinical data brought forth to scrutinize.  Many peer-reviewed scholarly articles were published throughout professional journals and other publications in the years that followed in an attempt to bring attention to some of the “needed” changes.

APA recruited more than 160 of the top researchers and clinicians from around the world to be members of our DSM-5 Task Force, Work Groups and Study Groups for this important job. These are experts in neuroscience, biology, genetics, statistics, epidemiology, social and behavioral sciences, nosology, and public health.  These members participate on a strictly voluntary basis and encompass several medical and mental health disciplines including psychiatry, psychology, pediatrics, nursing and social work. http://www.dsm5.org/about/Pages/faq.aspx

In 1981, Aspergers began to appear in the psychiatric community more frequently, but it was not until 1994 that it even became a standardized diagnosis (NINDS, 2015).    To fund research a grant is only considered if it has substantial merit; of the applications submitted each year both in the U.S. and the U.K., less than 25% ever get approved (MRC, 2016).  To get a research grant approved for a period of time spanning over three years (to collect longitudinal and follow up data) very few ever make it past the initial application stages.  Often the ones that make it into the less than 25% take multiple application submissions (conducted annually) and require a whole lot of relevant scientific data to sell the funding request to the authorities making decisions in the first place.

TRACKING???

So, for a disorder that reached the DSM as an official diagnosis in 1994, the professionals who had any degree of knowledge on the subject of Asperger’s disorder (which were few and far between considering how fresh it was), or any hands on clinical experience working with Aspie’s AT ALL… were up against incredible odds where progressive research was concerned.  Of those that had the wherewithal to identify how incredibly important advancing the study of this disorder was, they only had a total of (less than) five years to apply for grants before their ENTIRE professional colleagues were underway re-vamping the DSM for the current gem we have in place today.  With such limited time in existence to even be considered a valid disorder, the amount of reinforcing scientific information to plead for research money fell short of sparking any degree of unanimous support.  I imagine (no proof to back this) that by the time anyone even knew what Aspergers was in the medical community, they were likely already aware of the future plan to lump it into Autism (yes, it was previously placed as a subgroup of Autism, but it stood on its own by way of diagnosis and treatment).

What does this mean in the grand scheme of things?  Again, it means that the psychiatric/mental health community was severely under educated about Aspergers by the time the new DSM Task Force was underway.

Who was there to passionately fight the “powers that be” on why it would be an unimaginable catastrophe if Aspergers was no longer recognized as its own separate diagnosis?

PSYCHIATRIC NURSES WERE!

(I will get to that)

So who exactly comprised the DSM-5 Task Force?  “Internationally-recognized clinicians” from around the world to include psychiatrists, psychologists, social workers, psychiatric nurses, pediatricians, and neurologists all appointed by the American Psychiatric Association (ie., Medical Doctors).  While the APA claims that hundreds (if not thousands) of professionals ultimately contributed to the revision of the current DSM, there were actually only 31 named individuals on the “official” Task Force list (APA, 2014).  Guess how many of those members were medical doctors?

Well here, you can count for yourself:

  1. David J. Kupfer, M.D., University of Pittsburgh (Task Force Chair)
  2. Darrel A. Regier, M.D., M.P.H., American Psychiatric Association (TF Vice Chair)
  3. Dan Blazer, M.D., Ph.D., MPH, Duke University
  4. Jack D. Burke Jr., M.D., M.P.H., Cambridge Health Alliance
  5. William T. Carpenter Jr., M.D., University of Maryland
  6. Xavier Castellanos, M.D., New York University
  7. Wilson M. Compton, M.D., M.P.E., National Institute on Drug Abuse
  8. Joel E. Dimsdale, M.D., University of California, San Diego
  9. Javier I. Escobar, M.D., M.Sc., University of Medicine and Dentistry of New Jersey,     Robert Wood Johnson School of Medicine
  10. Jan A. Fawcett, M.D., University of New Mexico
  11. ** Bridget Grant, Ph.D., Ph.D., National Inst. on Alcohol Abuse & Alcoholism
  12. Steven E. Hyman, M.D. (2007-2012), Harvard University
  13. Dilip V. Jeste, M.D. (2007-2011), University of California, San Diego
  14. ** Helena C. Kraemer, Ph.D., Stanford University
  15. Daniel T. Mamah, M.D., M.P.E., Washington University in St. Louis
  16. ** James P. McNulty, A.B., Sc.B., Mental Health Consumer Advocates of RI
  17. William E. Narrow, M.D., M.P.H., American Psychiatric Association
  18. Charles O’Brien, M.D., Ph.D., University of Pennsylvania
  19. Roger Peele, D., D.L.F.A.P.A., Montgomery County Government
  20. Katharine A. Phillips, M.D., Brown University
  21. Daniel S. Pine, M.D., National Institute of Mental Health
  22. Charles F. Reynolds III, M.D., University of Pittsburgh
  23. ** Maritza Rubio-Stipec, Sc.D., University of Puerto Rico
  24. David Shaffer, M.D., FRCP, Columbia University
  25. Andrew E. Skodol, M.D., University of Arizona
  26. Susan Swedo, M.D., National Institute of Mental Health
  27. Timothy B. Walsh, M.D., Columbia University
  28. Philip Wang, M.D., Dr. P.H. (2007-2012), National Institute of Mental Health
  29. William Womack, M.D., University of Washington
  30. Kimberly A. Yonkers, M.D., Yale University
  31. ***Kenneth J. Zucker, Ph.D., University of Toronto

http://www.dsm5.org/MEETUS/Pages/TaskForceMembers.aspx

I counted twenty-six.  Roughly 84% of the individuals directly overseeing and responsible for the ultimate end-product that became the DSM-5 are MEDICAL DOCTORS.  Where are the collaborative team members they so readily claim comprised this entire revision when it came time to actually decide what stays and what goes?  They can reassure the public all day long that they took into consideration everything that was presented before them prior to making final decisions.  Realistically, how could we ever know or believe this to be true when the ultimate voices came down to individuals from only one common discipline?  That is like saying a criminal on trial for an alleged bank robbery is given a fair and unbiased trial before a 12-panel jury of his peers… only 11 out of the 12 peers are bank owners… oh but rest assured, the prosecution and defense diligently poled hundreds of members within the jury pool prior to coming up with those 11 people!

How in the world did they arrive at all of this?

“APA’s goal in developing DSM-5 is an evidence-based manual that is useful to clinicians in helping them accurately diagnose mental disorders. Decisions to include a diagnosis in DSM-5 were based on a careful consideration of the scientific advances in research underlying the disorder, as well as the collective clinical knowledge of experts in the field. Advances in the science of mental disorders have been dramatic in the past decades, and this new science was reviewed by task force and work group members to determine whether diagnoses needed to be removed or changed.”

WAIT… WHAT?!?!?  

               “Careful consideration of the scientific advances in research underlying the disorder”

Evidence-based changes on a subject matter with very little “evidence” of anything, very little research into the origins, development, or cognition of an Aspie?  Next to NO studies on the life of an Aspie child into adulthood?  ZERO information on the effect this disorder has on family members and the afflicted individual throughout their lifespan? No interest, or investment into clinical trials to establish or to evaluate effectiveness of ANY therapy?  How can the APA use terms like “Careful consideration” and “Scientific advances” when discussing Aspergers and Autism and maintain a straight face?

 “As well as the collective clinical knowledge of experts in the field”

 Yes, let’s talk about the experts…

 Dr. Tony Attwood and Dr. Simon Baron-Cohen are my true definitions of “experts” in the field of Asperger’s syndrome and Autistic disorder.  Interesting that neither of them were collaborators on writing the DSM-5.  This is some of what they had to say about it: 

 

Tony Attwood

“[The DSM] has repercussions throughout the world, especially the English-speaking world.”

“I think the banning of the term Asperger’s syndrome is too premature.”

“Estimates of people who will lose funding eligibility range from 10 percent to 75 percent.”

“The medical insurance companies and other agencies will save money, I can’t say that this has been the driving force of the change; all I know is that this is the highly probable outcome. With fewer people being diagnosed, it’s going to be less expensive for the agencies that support such individuals — either government or private.”

http://consumer.healthday.com/cognitive-and-neurological-health-information-26/autism-news-51/guideline-changes-have-asperger-s-community-on-edge-675368.html

 

Simon Baron-Cohen

(Taken from a coauthored article published in 2013)

“In brief, these studies all show that DSM-5 provides better specificity (so reducing false-positive diagnoses), but at the expense of potentially reduced sensitivity, especially for older children, adolescents and adults, individuals without intellectual disability, and individuals who previously met criteria for diagnoses of DSM-IV “Asperger’s disorder.”

“Clearly more research needs to be done to provide a thorough and fair evaluation of this revision.”

“We suggest ASD could also be specified by other prototypical clinical subgroups, such as Asperger syndrome.  This would allow for more systematic investigation of these long-standing rich clinical descriptions, which have not been studied thoroughly yet. It is of particular concern that Asperger syndrome is not specified by DSM-5 given insufficient research being conducted into how this may differ from other forms of autism. In the context of a relative lack of consensus in definition, research findings of similarities and differences between “Asperger syndrome” and so-called “high-functioning autism (autistic disorder)” can either be interpreted as not supporting such a distinction or that it is premature to rule out the separateness of the two.”

“However, it is important to remember that autism is not homogenous, and defining it using the umbrella term ASD risks whitewashing the evident heterogeneity, which has a substantial impact for research into this condition. The identification of core features of autism using the broader ASD label cannot overcome the existence of heterogeneity. It has simply moved us from the level of subgroups (“apples and oranges”) to the prototypical level (“fruit”). We argue that to make progress in autism research, and ultimately to improve clinical practice, we need to move forward in the identification of subgroups within the autism spectrum.”

http://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.1001544

What if we consider my favorite group of people; nurses?  I do not think it is a stretch to suggest that some of the most empathetic members of our society find themselves in the field of nursing.  The nurses who also gravitate toward the practice of psychiatric medicine are a group I believe capable of providing a very unique and important perspective about Asperger individuals as they are the most likely members in the professional medical community to actually have hands on interactions with them.

While the DSM-5 Task Force would like us to not only believe that ALL professionals in the mental health field were given the opportunity to provide their input, they also want us to buy into the “fact” that they actually considered their expertise while drafting the new revision.  I am going to throw down the BULLSH*T flag on this one since a little bit of research yielded that the American Psychiatric Nurses Association (APNA) specifically addressed their opinion on the umbrella term for Autism Spectrum Disorder and how they did not feel that Asperger’s syndrome should be eliminated from the publication at all.

“ASD- agree with elimination of PDD, NOS. Asperger’s should stay since we have moved to an era when this is better understood and addressed.”

http://www.apna.org/files/public/dsmvfeedback_letter.pdf

 Why is it starting to sound like NONE of the actual experts on Asperger’s syndrome were ever consulted or acknowledged in the revision of the DSM-5?

 

It gets better

 

What if you were told that out of the 31 members of the DSM-5 Task Force, only 4 (maybe 5) of these “experts” EVER even worked in a clinical environment whereby they had any degree of exposure to patients with Asperger’s disorder or Autism disorder?

Wouldn’t that concern you even a little that the very people claiming the two disorders belong in the same diagnostic category had really spent their entire work in atypical psychiatric environments at universities? That these people who made the profound decision to link the two together literally never treated, worked with, or had any exposure to Asperger or Autistic individuals in their professional careers?

Yeah, ok.  So they read a whole lot, studied other individual’s work, and then came together to decide how it should all go down.

Well geez, in that regard I am personally more educated on Aspergers and have over 43,800 hours of personal intimate interactions, attempted therapeutic interventions, and research about the disorder!  Wouldn’t that make lil’ ole ME better equipped to speak on behalf of the Aspie community from a medical perspective than any of those “LEADING” professionals could ever claim?

How about you?  Don’t you think you are far more qualified than those men and women making life-altering decisions for your spouse, children, and future?!?!?!?

It is incredibly challenging for me to even believe a legit and renowned “Asperger Expert” is capable of effecting beneficial therapeutic programs and progress for an adult Aspie (while I KNOW they have tried).  With that belief (or lack thereof) I am supposed to now render faith in THESE men and women who have amateur knowledge (at best)?  THESE medical doctors are going to tell me that my husband belongs in the WRONG diagnostic category because of some things they “reviewed” in literature?

How in the HELL could anyone buy into that INSANITY?  HOW could they do this after knowing damned-well that there existed NEXT TO NOTHING by way of literature during the entire decade+ that they were already plotting to extinguish the diagnosis altogether.  I simply cannot get behind such exceedingly flawed conclusions, and clearly any professional with real knowledge believed they were disturbingly premature in their chosen adaptations within the DSM-5.

Even the “best” expert in both Aspergers and Autism is going to fall short of truly grasping the gravity of the disability unless they live/lived with an intimate partner, parent, or child who has it.  I cannot fathom how the DSM-5 Task Force members were able to make a call that not ONE of them has personal experience working closely with and not be disgusted in their abuse of power (I have gone through every article and field of study under the belt of every member on the Task Force, feel free to do the same).

To add to their completely inappropriate decision to categorize those who were previously diagnosed with Asperger’s disorder under ASD, there is evidence to suggest the majority of them also had questionable personal agendas during their “honorable” work on the revision (I will get to that).

What do they have to say for themselves?

“Using DSM-IV, patients could be diagnosed with four separate disorders: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, or the catch-all diagnosis of pervasive developmental disorder not otherwise specified. Researchers found that these separate diagnoses were not consistently applied across different clinics and treatment centers. Anyone diagnosed with one of the four pervasive developmental disorders (PDD) from DSM-IV should still meet the criteria for ASD in DSM-5 or another, more accurate DSM-5 diagnosis. While DSM does not outline recommended treatment and services for mental disorders, determining an accurate diagnosis is a first step for a clinician in defining a treatment plan for a patient.”

http://www.dsm5.org/Documents/Autism Spectrum Disorder Fact Sheet.pdf

So, in other words… the professionals just could not seem to get it right when it came to diagnosing Asperger’s syndrome because they had a ridiculously poor understanding and education about the disorder.  They consistently failed to identify Aspergers clinically because there was such a pitiable amount of research and education even afforded to them in the first place, let alone the scant amount of time since its introduction to the mental health community to even reach the practitioners who could diagnose it.  According to the APA, instead of widening the research funding and education to appropriately make this diagnosis to those that warranted it, IT JUST SEEMED EASIER TO FORGET ABOUT IT AND START OVER WITH A WHOLE NEW DISORDER!  How in the world are they going to back the last sentence in that paragraph and determine an appropriate treatment plan for a diagnosis that is not accurate to begin with?  Wow, that is some incredibly responsible and ethically sound behavior, isn’t it?

It does not stop there, the APA claims altruistic purpose behind every revision they made.  In fact, this is exactly what they wrote under the FAQ section of the DSM-5 website when asked why they made the changes they did:

 “DSM-5 is a manual for assessment and diagnosis of mental disorders and does not include information or guidelines for treatment of any disorder. That said, determining an accurate diagnosis is the first step toward being able to appropriately treat any medical condition, and mental disorders are no exception. DSM-5 will also be helpful in measuring the effectiveness of treatment, as dimensional assessments will assist clinicians in assessing changes in severity levels as a response to treatment.”

www.psychiatry.org/DSM5

Oh how remarkably noble of them.  They thought they would be able to more accurately research and treat Aspie’s by eliminating them altogether and causing a shroud of confusion and inappropriate treatment under the generic label by which they do not fit.  How can clinicians accurately report the effectiveness of a treatment when the subjects are not clearly defined and the data will be flawed to reflect this?  So when a therapy proves particularly effective (by the numbers) for ASD children or adults… it will become the norm and recommended therapy for the Aspie’s lost in that group.  There will be no individualized assistance for them because there will be no way to identify that THEY were not positively responding to the therapy in the first place.  They will be outliers.  That’s all they need… TO BECOME FU**ING OUTLIERS ALL OVER AGAIN!  Is anyone paying attention to the negative implications about to (and already) occurring from this terrible (purposeful) error?

 DSM-5: The real Implications

 I am personally all-too aware of the devastating implication of the new DSM on the Asperger/ASD community, but I am certain the lapse in professional responsibility that caused these particular groups to suffer also adversely affected others within the mental health system.  For the Asperger child/adult (and their family) they have been denied the right to an appropriate diagnosis, they have been denied the identity that could enable a positive sense of self, they have been denied the right to proper treatment and education, they have been denied the potential for future progress and therapy, and they have been denied the very chance at having their “disorder” understood and accepted in a society that trusts the word of the “professionals” who did this to them.

For the children and adults formerly diagnosed with autism (of any spectrum functioning) and those that have since been diagnosed or will be in the future, as well as their families… they have been equally assaulted by the new DSM revision.  These children, adults, and family members are inundated with such a ridiculous amount of misinformation and alarming claims every time they turn around that they will likely never be able to make sense of the diagnosis in time to develop stable and healthy foundations for themselves or family.

What do I mean by that statement?  With the new DSM there has developed an incredibly dramatic terror among our society that our children are being ravaged by an epidemic of Autism so vast the diagnoses are rising each day at freakish rates.  This false appearance of an increase in individuals diagnosed with Autism (thank you DSM-5 Task Force) has caused a ludicrous reaction from the public and an outcry to find a cause and cure immediately.  This demand has led to unscrupulous amounts of propaganda to insight further fear on behalf of our responsible media and an influx of “scientists” claiming to have the answers (with dollar signs in their eyes).  The people who legitimately warrant an ASD diagnosis and the families that love them are so lost in a mix of confusion and continuously shifting and conflicting information from primary care doctors, teachers, psychiatrists, psychologists, therapists, friends, family, internet support groups and forums, journal articles, books, movies, news reports, and every other person who “knows” what they need to do… they don’t know what to believe.

Imagine being told one minute your ten year old son has Asperger’s disorder by one professional and High Functioning Autism or ASD by the next, yet none of them even agree on what any of the terms actually mean.  Imagine going to a support group online for parents of children with ASD and trying to illicit advice from empathetic people only to be given twenty different methods to discipline or support your “troubled” or disabled child.

Imagine being told something else is responsible for your child’s difficulties every other day and making dietary, environmental, physical, and emotional adaptations to help them (based on the latest research or expert advice) and being exhausted and unable to emotionally, physically, or financially keep up with the information you receive the following week.  Imagine when every single effort you have put forth has not been helpful and your son’s behavior is progressively deteriorating.

Imagine if one day a decade later you discover that your son does in fact have the disorder formally known as Aspergers and that 95% of the information you received throughout his adolescence and young adult years was useless and completely wrong.  Imagine that the information that you needed to help your son grow to be a functioning member of society and have a job, or healthy relationship, or the potential to have a family… were all prevented because you were ineffectively imploring tactics and tips and advice that pushed him deeper and deeper into a defense mode that he stood little chance of escaping.

Imagine if you then searched diligently for anyone who could help you and your son based on the right information and diagnosis (existent or not) and discovered that there was NO ONE available because over the last fifteen years Aspergers had become obsolete and lost within the ASD world.  Imagine that there was never any effective therapy established to help an Asperger adult, and that there existed no information about the success stories… because no one ever found a need to invest funding into following and evaluating Asperger-diagnosed children into their adulthood.

Without those studies you have no clue what direction to turn because you do not have one single success story of an adult like your son to even read about.

Oh, but Asperger’s disorder is biologically linked to autism disorder and this is absolutely proven (enough to alter the entire course of psychiatric medicine) because “they both have deficits in social communication and social interaction AND they both exhibit restrictive repetitive behaviors, interest and activities.”

 

 

ARE

 

YOU

 

FU**ING

 

KIDDING

 

ME

 

 

Please tell me you are tracking now…

 

It is not merely the emotional damage and destruction of the people personally effected by Asperger’s disorder and Autism disorder (as if that is not enough).  The implications of the DSM-5 expand far beyond that.  Through the revision an entire field of medicine, which is already tragically behind every other practice, has been stunted and set back decades.  Every professional practice and every bit of current literature, now has to be reevaluated for its effectiveness or validity under the new diagnostic criteria.

Dr. Allen Frances, the man in charge of overseeing the revision of the DSM-IV (and contributed to its predecessors) wrote an incredibly disconcerting piece: A Warning Sign on the Road to DSM-V: Beware of Its Unintended Consequences, that coherently identifies the very things that have been making me feel so outraged over the last four years since my husband was diagnosed with Asperger’s syndrome and I began educating myself about what this meant for us (and our future).

I feel the need to bring special attention to some profoundly disturbing implications he pointed out prior to the publication and effective use of the new manual.  For one, outside of the horrible disservice and disregard of those formerly having or currently warranting an Asperger diagnosis, he identified that:

The most obvious cost is the significant burden to the field of having to learn and adapt to any changes included in DSM-V. This will be borne by all clinicians, educators, administrators, and especially mental health researchers.  Changes that frivolously require new diagnostic instruments (or result in findings that are not comparable over studies and over time) waste money, slow progress, and make it far more difficult to translate research findings into clinical practice. Any “innovations” made in DSM-V should be clear and proven winners or they will not be worth the high overhead cost inherent in any change.”

Dr. Frances effectively drives home the disheartening fact that:

 “The DSM-V goal to effect a “paradigm shift” in psychiatric diagnosis is absurdly premature. Simply stated, descriptive psychiatric diagnosis does not now need and cannot support a paradigm shift. There can be no dramatic improvements in psychiatric diagnosis until we make a fundamental leap in our understanding of what causes mental disorders. The incredible recent advances in neuroscience, molecular biology, and brain imaging that have taught us so much about normal brain functioning are still not relevant to the clinical practicalities of everyday psychiatric diagnosis. The clearest evidence supporting this disappointing fact is that not even 1 biological test is ready for inclusion in the criteria sets for DSM-V.”

 “Fortunately, the NIMH is now embarked on a fascinating effort to effect the real paradigm shift of basing diagnosis on biological findings.  Unfortunately, this is years (if not decades) from fruition. So long as psychiatric diagnosis is stuck at its current descriptive level, there is little to be gained and much to be lost in frequently and arbitrarily changing the system. Descriptive diagnosis should remain fairly stable until, disorder by disorder, we gradually attain a more fundamental and explanatory understanding of causality finding.”

  In case you are unclear about what he is suggesting, it is that this entire new method and means of formulating a diagnosis under the DSM-5 amounts to a bunch of unproven theories with nothing significantly founded by grounded research to support its creation.  In other words, these “professionals” just set back the field of mental health and psychiatric medicine significantly in favor of something that they have absolutely NO PROOF of!

Are you getting nauseated yet?

I could go on about the other unsettling issues that Dr. Frances brings to light (and I have willfully followed the trail to confirm) in the article published some time before the release of the new manual, but I will not.  I will mention two of the more intriguing points, like how unusually secretive the DSM-5 Task Force was during the entire process of creation, or the implications for new diagnoses that will likely serve to over diagnose patients who do not warrant a mental health disorder label.  While troubling, those particular issues are outside of my focus in regard to the atrocity in the exclusion of Asperger’s disorder and lumping everything under a blanket umbrella of ASD.  Dr. Frances does back my point that this whole disaster was orchestrated by some highly intelligent Medical Doctors who were working far outside of their scope of practice when they undertook something so profoundly important that could adversely affect millions of lives.  Ultimately, the frightening foreshadowing that Dr. Frances delves into in his article about the DSM-5 has all but entirely begun to come to fruition only three short years after its release.  Don’t believe me, see for yourself:

http://www.psychiatrictimes.com/printpdf/158043

 

In Summary: The DSM-5 is a cruel joke in regard to Asperger’s syndrome

At the risk of insulting the readers of this post, I am going to attempt to give an analogy to show what the psychiatric/mental health community has done to our loved ones at a very elementary level:

Let’s pretend you are an adult male living in a small town in northern Alaska and you were just told that you have a condition that would likely have been diagnosed as bladder cancer when there was an oncologist (cancer doctor) and urologist (urinary tract doctor) living in your small town years prior.

Unfortunately, neither of those doctors are available any longer and the only medical doctor within a 200 mile radius is a general practitioner with a former focus on endocrinology (study of the endocrine system).  This doctor has officially diagnosed you with Diabetes Mellitus because, well, you have had a dramatic increase in the urge and frequency of your urination in the last three months.

Would you want to listen for even a minute about what treatment plan that “professional” had in store for you???

 Let’s make this even more of an analogy:

What if there were known diagnostic imaging tests, like ultrasounds and MRI scanning that could definitively diagnose your bladder cancer?  What if your medical doctor had access to that equipment but was not really educated in diagnosing diseases of that nature and therefore did not implore them?  What if you had NO CLUE that the reason you had to urinate so much was because of bladder cancer at all (and no one told you their suspicion)?  What if you had next-to-no knowledge on anything medical and fully believed in the expertise of the professional entrusted to provide the most effective and appropriate treatment for you?

What if you dramatically modified your dietary and physical behaviors and entire lifestyle in general because of your Diabetes diagnosis and you diligently adhered to every treatment recommendation your doctor suggested for you?  What if you didn’t get any better and in fact, felt yourself becoming more and more ill as the days progressed?

Ok, STOP

Really consider this:

What if one day you came across a women in the local market who saw you rush to the bathroom and reemerge with a look of discomfort on your frail and ill-appearing face?  What if this woman opted to strike up conversation with you in the checkout line and you offered up honest information about your state of health despite being embarrassed to talk about it openly?  What if this women listened attentively and immediately identified that your symptoms and general appearance sounded remarkably similar to the symptoms her father had endured shortly before being diagnosed with and dying from bladder cancer?  What if she then gave you websites, support groups, and top oncologists and urologists in the field for this disease?

Would you go home and ignore everything you have been told by her?  Would you seek a correct diagnosis or would you place your life on the line for a person who has never treated patients with urological cancers and was diagnosing you with something entirely different?

 

OF COURSE YOU WOULD GET THE RIGHT DIAGNOSIS…

 

YOU’RE NOT A MORON!

What if you finally DID get the correct diagnosis and you began getting treatment from an oncologist who was rather new to the specialty (but still had access to all of the knowledge he needed to try to help you) and one day he came in and told you that you were no longer “technically” diagnosed with “bladder cancer”?  

What if he explained to you that since bladder cancer was so uncommon to begin with (in comparison to Diabetes Mellitus and other cancers) that the money just never made it to your type of cancer?  What if he also justified this new adaptation to your diagnosis by telling you that “researchers” have found a probable link to Diabetes in the family of individuals whereby other cancers develop?  What if you just went from having bladder cancer to being diagnosed with Diabetes Spectrum Cancer Disorder?  What if you were told by this man (whom you had desperately sought out for help and spent tons of money on and countless years praying for) that he was going to go ahead and tailor your treatment back to the treatment that works best for the general population who now falls under this vast umbrella?

HOW WOULD YOU FEEL???

I know I would feel like it was time to give up hope.  I would think the only future in store for me was another meaningless uphill battle and I was likely looking at another few months/years of being given the wrong advice and treatment plans.  I would think that there was no way, regardless of what this oncologist told me, that he would ever be treating MY CANCER the right way from that day forward.  How could he even legally do that within the ethical parameters of his profession if he opted to treat me with information that was now considered obsolete or untested in the face of DSCD?

I WOULD BE DEVASTATED!!!  

NOW YOU TELL ME…

How is this made-up scenario any different from what they have done to our FAMILY?!?!?  They had the tools in the toolbox to diagnose them properly.  They knew the correct clinician and information existed.  They knew there was no means to help any of them (Aspies) without furthering the education among the mental health community on a grand scale… they knew there was better diagnostic methods to continue pumping money into so that inevitably the right diagnosis could be made for everyone.  They knew if they allowed this DSM transformation to occur that there would be an entire subgroup left out in the cold to suffer for the rest of their days.  If they did not know this, they were incredibly uneducated about anything-Asperger-related. Anyone with a clue would have been outraged… those at the top who allowed it to happen without first considering the impact on EVERY SINGLE SUB-GROUP they were potentially harming… they chose to turn a blind eye and follow the money and/or the easier path.  Guess it was easy to choose the path of least resistance with the highest personal yield when there wasn’t really much data to prove them “wrong.”

But what if there WAS actual diagnostic proof that Aspergers and Autism were entirely separate disorders by way of the brain processing that even comprises them?

Aspergers-v-autism-distribution-courtesy-Duffy-1024x611.jpg
Aspergers (red) vs. Autism (green)

At Boston Children’s Hospital, a neurologist named Dr. Frank Duffy set out to provide proof that Aspergers and ASD’s were not the same disorders at all and wanted to do this with unarguable diagnostic data.  As both an engineer and neurologist, Dr. Duffy is an expert in interpreting electroencephalography (EEG) signals; this is the diagnostic measure of the electrical activity within a person’s brain.  EEG’s are the GOLD STANDARD of diagnosing brain activity.  It is generally accepted within the medical community to utilize this very method to declare a person “brain dead” and withdraw life-support… so we are not talking about some far-off tool he utilized.

 After conducting studies on over a thousand children ages 2-12 and producing repeatable results, Dr. Duffy was able to prove with a reasonable amount of scientific certainty that there was a clear difference in the patterns and brain connections in children with Aspergers compared to children with Autism.  While he also found that both children with Autism and Aspergers were more closely similar on the EEG then compared against a Neurotypical (NT) EEG reading, he absolutely believed his study showed a definitive and unarguable result that they were still NOT THE SAME and did not belong in the same diagnostic category.

 http://vector.childrenshospital.org/2013/08/autism-and-aspergers-are-different-at-least-on-eeg/

  You can spend a great deal of time researching (as I have) the many diagnostic methods utilized to date that give very clear indications that Aspergers is its own separate category (like MRI studies).  Or, you can continue being naive to the fact that there is an incredible amount of information to show the differences in the two disorders and very little to suggest the similarities (other than that whole: social deficit/focus on special interest link).  I urge you to open your eyes and demand more money is placed in the right hands to continue exploring the truth like Dr. Duffy has begun in lieu of supporting the financial gain of negligent money-grubbers who see more dollar signs in attempting to mislead the public by creating a false connection between the two.   

 There exists so many ways to differentiate the two disorders, but the money has not been put into it.  Oddly, there is an unimaginable amount of money being pumped into finding the root-cause of Autism.  Doesn’t anyone want to know why this is?

  See if you can follow me here:

  • In 2010, the scientifically agreed upon prevalence of Autism disorder was 1 in 176 persons affected.  With over 6.9 billion people comprising the world population in that year, it was believed that over 39 million of them had Autism.
  •  In 2013, Tony Attwood reported that according to expert epidemiologists approximately 1 in 200 individuals had Asperger’s syndrome.  With over 7.1 billion people comprising the world population that year, it is believed that 35.8 million of them had Aspergers.
  •  In 2014, the world population was approximately 7.3 billion strong.
  •  That same year, the Centers for Disease Control and Prevention (CDC) estimated that approximately 1 in 68 people had Autism Spectrum Disorder.
  •  I am not a mathematician over here, but that would mean 107,352,941 people had Autism Spectrum Disorder in 2014 

107,352,941???

What is going on?  That looks like a serious epidemic doesn’t it?  Autism went from 39 million to 107 million in only four years?!?  

No wonder the public is terrified!

  Use some common sense people…        

 Aspergers and Autism are combined now, so there’s your 75% (or 75 million people).  The other 25% (or 25 million people) can be accounted for now because women with Aspergers who would have otherwise gone undiagnosed are looked at closer with the ASD criteria; allowing them to fit within its parameters. 

The rest, I am going to give that credit to the innocence (puke) of the pharmaceutical companies and their righteous backing of new medications to help ease the symptoms of Autism as well as their phenomenal and unbiased “education campaigns” to reach the public and raise global awareness of this God-awful epidemic stealing the minds of our beautiful children.

I guess that explains the current 1 in 68 figure and the mystery appears to be solved… someone should tell that to the public. 

Oh, they have tried? 

That’s right, countless people have attempted to get this message and truth across but they simply cannot compete with the entity that serves to gain the most from allowing the “epidemic” theory to proliferate.

The big (and only) winner in the new DSM-5 combination of Aspergers and Autism is the pharmaceutical industry and every single person who stands to gain a monetary reward for fueling false propaganda and effectively destroying the lives of millions of people.  Remember the numbers I just told you about how many people are actually worthy of an Autism or Asperger diagnosis… AT LEAST 75 MILLION PEOPLE WORLDWIDE?  Well that number is profound, and to be honest, likely very trivialized by way of Asperger figures considering the 10:1 ratio of males vs. females deserving of the diagnosis is likely incorrect in the first place. SEE: WHAT CAUSED THIS?

Aspergers was never a very lucrative disorder for the big drug companies, as the leading experts were always VERY cautious to recommend any medication that showed real evidence in managing any of the symptoms.  Autism… well they are seriously making headway on convincing parents across the globe that varying medications have shown incredible symptom reduction for ASD children!  Imagine the goldmine they will have if they can get everyone equally on board with a few drugs… perhaps a new class altogether, to effectively treat those little Autistic kiddos!?!?  

                    WANT TO HAVE A GOOD LAUGH???

 “69% of the DSM-5 task force members reported having ties to the pharmaceutical industry.”

 http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1001190

Oh no, I am NOT kidding. 

According to an article published in 2012, (prior to the release of the DSM-5 but LONG after the revision had begun over a decade prior) it was discovered that the APA was not being forthcoming and transparent about the Task Force ties to the pharmaceutical industry.  A “Speakers bureau” is a core group of staff or volunteers available to a particular interest for participation in meetings and gatherings within the community.  In other words, they are the voices that back a topic of interest.

 “Pharmaceutical companies refer to individuals who serve on speakers bureaus as “key opinion leaders” (KOLs) because they are seen as essential to the marketing of diseases as well as drugs.”

 The current APA disclosure policy does not require panel members to specifically identify speakers’ bureau membership but rather cloaks it under “honoraria”.”

 “Despite increased transparency, (from the DSM-5 Task Force) it remains unclear how many individuals participate on speakers bureaus, because panel members may simply list “honoraria.”  None of the DSM panel members identified participation on speakers’ bureaus.”

 “When we did an internet search of the 141 panel members, we found that 15% had disclosed elsewhere that they were members of drug companies’ speakers’ bureaus or advisory boards.”

 “Speakers bureau participation is usually prohibited elsewhere (e.g., for faculty in medical schools).”

 There are many other articles (https://www.karger.com/Article/FullText/357499) that discuss the conflict of interest present in the DSM-5 construction and production with the pharmaceutical industries.  Dr. Frances pays mention to this very “conflict” by addressing the likelihood of the big drug companies applying “skillful” pressure to the DSM-5 publication:

 “It has to be assumed that they will attempt to identify every change that could conceivably lead to a marketing advantage—often in ways that will not have occurred to the DSM-V Task Force. To promote sales, the companies may sponsor “education” campaigns focusing on the diagnostic changes that most enhance the rate of diagnosis for those disorders that will lead to the increased writing of prescriptions.”

Do I really need to summarize how unethical and unjust the Autism Spectrum Diagnosis was, is, and will continue to be, or how those responsible for its creation are deserving of some serious criticism and anger from the 100 million individuals and the unimaginable number of families devastated by this incredible travesty?

I have enough written work to make reading this post hours longer than it has likely already been, but I suspect I have either sold you that something is terribly amiss by now, or you left the writing long ago.

How do we, the NT family members begin to hope for a happy future when our circumstances and marriages are no longer being analyzed and studied?  If Affective Deprivation Disorder (Cassandra Syndrome) were ever a valid diagnosis, they sure substantiated it even further by LITERALLY denying the very marriage we even exist in at all.

 

Open your eyes and get angry guys…

This is OUR future and the professionals have got it wrong!


10 Responses to ASPERGER MARRIAGE: WHAT DOES AUTISM SPECTRUM MEAN?

  1. Avatar visualvox
    visualvox says:

    Reblogged this on VisualVox :: Notes from the Aspie Interior and commented:
    This is a fantastic summary of the conflicts inherent in the blurring of lines between Asperger’s and Autism. It summarizes pretty much everything I think and feel, but in a much more cogent and experienced way. It’s also the reason I’m phasing out use of the unqualified terms “autism” and “autistic” from this blog. I’ll refer to the autism spectrum, or “the spectrum”, sure. But not only does it not feel right to me, applying the Autism label to all conceivably related conditions, but it’s also logically and ethically indefensible.

    This is a fantastic read. Please check it out, if you haven’t already.

    • You made it official… someone was actually willing to read my excessive babbling!! Since I have yet to really put my blog out there and am basically just ranting to myself on most days, I was stopped in my tracks when I realized the first person (not in my own head) to read anything I wrote was a woman with Asperger’s. You better believe I was jumping for joy to share your response (and Gillian Drew’s) with my husband. I think I may have proudly proclaimed, “See Dude! It isn’t just crazy people with my defective brain that share my opinion!!” Thank you for affording me the bragging rights (and getting him to read some of your blog in the process… a HUGE leap in our home). Don’t stop writing. Your words are valuable to those outside the box desperately wanting in (like myself).

  2. As someone with Asperger’s, I couldn’t agree more. To merge AS into Austism Spectrum Disorder makes no sense whatsoever, is entirely for the benefit of diagnosticians rather than those of us living with and affected by the condition, and a massive step backwards. I had expected the different disorders on the autism spectrum to become more specific over time; to go the other way and merge all of them into a single, general, umbrella category that is so broad it has no practical use is the opposite of progress. You’re right to be angry, as I am!

    • It means so much to hear you share the same sentiments! It means even more after reading (and loving) your blog as it has altered my original thought that I would be hated by those “non-NT-wives” out there! Perhaps my intention to gear everything toward that subset may need some tweaking in the future. Also, you have inspired me to create a new post that is currently under “Kara-Construction” (meaning I will finish it eventually when I get a day off) titled: ASPIE’S AREN’T FUNNY. I think you will enjoy that one so I will let you know when I manage to wrap it up!

  3. Pingback:ASPERGER’S SYNDROME: WHAT CAUSED THIS? – Happy Asperger Marriage

  4. Avatar Hilary
    Hilary says:

    Having Asperger’s comes with sensory issues that are not going to respond to medication or therapy with a mental health professional. These sensory processing issues cause a lot of problems with perception and get in the way of functioning. Also the muscle memory often doesn’t work well with Asperger’s so things like hand writing just do not improve with time or practice the way it would for an NT. How is a mental health professional going to address things like this? We have had to make so many accommodations to daily life in our home to function well, because of that I am thankful that Asperger’s is lumped with Autism. I was in counseling for a long time, it did no good. Also, antidepressants had a terrible outcome. There are environmental changes which once they’re made, make it much easier to function normally, then the symptoms are decreased and the person can progress. Counseling could help provide coping techniques, but the sensory issues that are at the heart of Asperger’s need to be addressed. There are also so many physical medical conditions that contribute to or result from Asperger’s- both of my children wear glasses, have hearing issues, gastrointestinal issues, sleep problems etc that when we treat one of those, they are more able to function emotionally and socially. Psychiatry can’t touch those and they have a major impact on where they’re at on the spectrum.

    I hear how upset you are and I’m sorry that this is so frustrating. I feel angry a lot too. I see your points, and they are valid. It’s quite possible that I don’t understand you fully, I don’t understand the technical aspects of this. All I know is that with getting help for my children, their medical and sensory issues have to be cleared up if we want to make lasting changes to the social/emotional parts. Just the sleep disturbances/breathing problems alone cause so many meltdowns during the day. Both are high functioning and you wouldn’t realize that they have so many medical issues, but they do. The blanket term Autism, helps us to look at these problems as part of the whole. Mental illness also goes hand in hand much of the time just because of how stressful growing up with Autism/Asperger’s is and how people treat you when you have it. It can start to overshadow the true problems, which if cleared up would help a lot.

    One final thought- the DSM is based off of and changes with social norms. Being gay used to be in the DSM along with many other things that we no longer consider to be mental illness. I share your anger in the money that is being made off of the people who are suffering. A lot of money is made off of people believing that something is wrong with them. More understanding, love and patience would be a good thing all around. Our society makes me sad and I don’t put a lot of stock in these labels. People intrinsically know when they aren’t loved for who they are and it causes all sorts of odd behavior. Much can be avoided if we understand that we cannot change another person and instead meet them where they’re at and love them unconditionally.

  5. Pingback:HOW ARE ASPERGER’S SYNDROME AND AUTISTIC DISORDER DIFFERENT? – Happy Asperger Marriage

  6. Well, your reply on this post sent me on a whirlwind of research and all-night typing. Thank you, you are a very inspiring person! I hope my end-product (See: HOW ARE ASPERGER’S SYNDROME AND AUTISM DIFFERENT) post effectively answers some of the points you brought up in your comment.

  7. Pingback:ASPIE/NT MARRIAGE: WHAT DOES ALTRUISM HAVE TO DO WITH IT? – Happy Asperger Marriage

  8. Pingback:70 of the absolute BEST #ActuallyAutistic blog posts I’ve ever read (300th post) – the silent wave