Sunday, May 19, 2013

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.

8 comments:

farmwifetwo said...

The answer is "NO" since the child Psychiatrist said that under the V my eldest was "social communication disorder". I am planning a redo for him.

But, the youngest had a redo/added (something wasn't done last time... I let it go at the PDT meeting and figured I'd find out at the psych one later) of his non-verbal psychometric testing and on Wed (psychiatrist called at 5pm) I was told that it came back age 15. Not bad for an 11yr old, eh?? Thing is, with the verbal testing his IQ is now 77 = borderline and she actually thought this meant I no longer wanted him Dev Delayed. Excuse me?? Pull his placement?? Pull his supports?? He started in Gr 6 computers a couple of weeks ago, he out reads, writes and spells most Gr 6 kids. His math is poor and he can't take regular science etc because of the complex questions, labs and abstract concepts - kept around K to Gr 1 level. Will attend regular music in the fall since he can play basic 2 hand pieces on a piano - not a savant nor do I expect to have one. This is the reason he's doing so well. I no longer believe inclusion above all else... supports and individual education programs are more important. Then let's discuss the stimming, the wandering off inside of his own head, the bolting, the social issues, the fear of rain, the hands over the ears etc.

Regular class?? Not going to happen. But, since he has an IPRC, what I have been told is that it cannot be changed unless I request it... I don't plan to.

What it means is that this severe, non-verbal (speech is still around age 2) autistic child... my fiddler... can be taught.

Not only taught... but not using ABA.

As I said to my FSW from Comm Living... After all that abuse, how very, very much I wish I could call them and say "I told you so".

Roger Kulp said...

I have been told in some states,school age children with autism are reevaluated every two years.Maybe this out to be standard practice for everyone.

As someone who follows the research very closely,I know most of the research is not concentrated on the mild end of the spectrum.

It can help to get real answers,like you probably want,if you have gotten another diagnosis besides autism.While we may not like it,seizures,developmental delays,intellectual disability,regressions,or neurometabolic disease will never be figured into an autism diagnosis,and that's very sad.

usethebrains godgiveyou said...

I'm happy for you farmwifetwo...that's a remarkable story for your son, you are a good advocate for him. He sounds like a real mix!His skills are up, down, up, down...

I think, it is like some have called, a question of "shadow syndromes"...very much like the more serious ones in many ways--except "intensity". I heard Dr. Frances talking to a woman who was medicating her son for "bi-polar".

I'll paraphrase, but it was something like "I'm not saying your child doesn't have real troubles. I am saying we don't need to label and medicate every difficult child."

Raising my son, and having worked in a residential setting for kids with severe problems(for a short time) I've always understood where you were coming from, Mr. Doherty. You've never wavered in your love, or concern for your son. You've never attempted to be "politically correct".

I will be relieved if the label leaves my son, although I think his problems are more severe than our autism heroes. He never fit the bill. In parents classes, I was lost in the Autism group, and fit right in the ADHD group.

Please, never attempt to be politically correct. I appreciate straight talk.

jonathan said...

I don't know about Ne'eman, but Robison has stated that he no longer has a disability of any kind, though he was disabled as a child, yet he was not diagnosed until he was 40. Even according to DSM IV, he likely would have had to have been disabled to be legitimately diagnosed. So I don't know if he ever had a legitimate diagnosis or if he was still disabled at 40 and now at 55 is no longer disabled. He claims he still has Asperger's at 55, though he is not at all disabled. I'm not sophisticated enough to understand the reasoning behind that.

Anonymous said...

I agree with you Harold. Kids on the severe end will always be ignored and swept under the rug and these two phonies and those like them are to blame. They are not autistic (or barely) yet these are the types that continually represent autism when in reality severe autism is what is more common.

I think even worse than these two promoting themselves constantly are the obnoxious parents who write and talk about them as if they are Gods. It is a never ending battle in Massachusetts when we have big mouth (literally) parents such as Jessica Wilson and others who often write blog posts singing the praises of these two. It is truly sickening that these type of people are claiming to speak for severe kids and seem determined to convince people autism can be wonderful.

To these people I really just want to say shut your fat traps. You make life so much worse for our kids in the long run.

Roger Kulp said...

Amen to that.Let's not forget news stories like this.I've heard parents of severely disabled autistic children say the likes of Jacob Bennet,or John Elder Robinson give them hope for what their children might be in the future.I'm sorry that's just delusional.

Kate Mia said...

In reference to "Grandfathering",
Dr. Catherine Lord, DSM5 committee member's statement that "Essentially Everyone Gets In" was hyperbole even if it was quoted in the media with full context.

According to the Chair of the APA associated DSM5 ASD, working group Committee Sue Swedo, the only impairments that may be met by client history alone are RRBI's.

http://www.psychiatry.org/practice/dsm/dsm5/dsm-5-video-series-changes-to-autism-spectrum-disorder

Three of three Social Communication Criterion elements are required across the lifespan for diagnosis, which may fully manifest at an age later than early childhood, when social demands exceed social capacity to meet those demands.

It is highly unlikely that either Ne'eman or Robison would be diagnosed under DSM5 ASD criteria alone, strictly, with the guidelines in that diagnostic manual, if they came on to the scene as unknowns today.


However, both would likely meet Gillberg Criteria for Asperger's Syndrome, as it is a much different syndrome than the Autistic Disorder that your son was diagnosed with.

The commonality is a few shared behavioral impairments in reciprocal social communication.

I do not see where your concern over individuals with co-morbid intellectual disability is warranted over potentially missing a diagnosis, as a significant level of concern, based on the research available in regard to the impact of the new DSM5 criteria and ASD.

Dr. Fred Volkmar, has been refuting DSM inconsistencies for over a decade now, starting with the editorial error in 1994, which technically allowed individuals to be diagnosed with PDDNOS by RRBI's alone.

His most recent determination in his research is that it is the individuals on the so called "high end" of the spectrum who will no longer be diagnosable under the DSM5 ASD criteria.

http://www.molecularautism.com/content/pdf/2040-2392-4-11.pdf

Dr. Catherine Lord's research was highly limited in her estimate that only 10 percent would lose a diagnosis. It was not based on a real clinical setting of diagnosis.

Asperger's syndrome is a considerable source of disability, as it limits the ability for reciprocal social communication, even though self-help skills often remain intact.

Part of the problem with the DSMIV and ICD10 descriptions of Asperger's syndrome is that they never fully captured the actual syndrome of "Autistic Psychopathy", which Hans Asperger described, captured well by the Gillberg Criteria for Asperger's Sydrome.

The ICD10 and DSMIV approach "simply" eliminated the Communication criterion of Autistic Disorder and reduced the Criterion elements required for diagnosis under Social Interaction and RRBI's.

On the other hand, the Gillberg Criteria established 6 mandatory Criterion, fully reflecting Hans Asperger's actual research on "Autistic Psychopathy" with 9 elements required for diagnosis.

The neurodevelopmental deficit in motor deveopment, which is a mandatory criterion for diagnosis in Gillberg Criteria for Asperger's Syndrome, assures that some type of neurodevelopmental deficit is captured, under that Criteria.

The DSMIV criteria is loosely enough described where, in effect, an individual under the influence of non-substance behavioral addiction, per ASAM, American Society of Addiction Medicine, full definition of addiction, could potentially meet diagnostic criteria for either Asperger's or PDDNOS, coming, in part, strongly influenced by cultural environment over genetic propensity.

http://www.asam.org/advocacy/find-a-policy-statement/view-policy-statement/public-policy-statements/2011/12/15/the-definition-of-addiction

That genetic propensity could be the propensity, in some cases, toward the disease of addiction, which is a genetic propensity studied and reported among many individuals diagnosed with ADHD.

Part 2 of comment below:

Kate Mia said...

Part 2 of Comment:

The problems of individuals in the so called "Neurodiversity" Movement" are real and they are extremely complex.

Many of those type of problems that warrant appropriate support and concern, will in effect, be missed in the future, and not captured under the new DSM5 criteria for ASD.

Even some individuals who do have the "Asperger's Syndrome", as described by Hans Asperger and fully captured in the Gillberg Criteria.

This concern by Fred Volkmar, is warranted.

Unfortunately, the "Neurodiversity Movement" in part, has made this a self fulfilling prophecy by minimizing the real disability that can occur for a person who fully has the "Autistic Psychopathy" syndrome described by Hans Asperger's.

However, most of the responsibility lies squarely on the shoulders of the DSMIV organization and the ICD10 organization by not taking the appropriate time and effort to actually describe this "Autistic Psychopathy" syndrome.

In full effect, "Autistic Pychopathy" as described by Hans Asperger and named as such by Lorna Wing, Uta Frith, and appropriately described as such by Christopher Gillberg in actual criteria, along with the help of Tony Atwood and others, never existed in either DSMIV or ICD10 criteria text.

Some of these people from the "Neurodiversity Movement", specific to the ASAN organization, have only hurt themselves and others like them, if anyone, by minimizing the challenges of this "Autistic Psychopathy" syndrome, in their efforts to gain the long term support and accommodation that people with this actual "Autistic Psychopathy" Syndrome need in life.

The reality is, there are not that many people that support this movement. The internet amplifies the same voices over and over and over. Which makes it sound much more impressive than it is in "Real Life", if one pays it any mind on the internet.

It is mostly emotional hyperbole, and not something to reasonably take serious, per any potential harm for your son and others like him.

The focus in the future, in support and research, per this DSM5 change, is going to be more focused on people on the spectrum like your son, than ever before.

It is a real problem that "Autistic Psychopathy", is losing identification as a separate syndrome for research purposes, specific to that syndrome.

Not so much, though, for the "enigmas" that run successful "elite" mechanic shops, mingle with people in Politics in "high places" socially, or even among people like Temple Grandin, who have unusual brain anomalies associated with challenges and incredible talents, per neuroplastic adaptation.

There are 30 to 45 million estimated other people in the general population on the Broader Autism Phenotype that share these type of strengths and challenges, which are no where close to the challenges people like your son, and other people with this "Autistic Psychopathy" syndrome, historically labeled now in DSMIV criteria as Asperger's Syndrome, experience in life.

It is not people like your son that lose out in this DSM5 change.

It is those individuals focused on by Fred Volkmar in his research, and Tony Atwood in his clinical experience of decades working with these individuals helping them with their substantial difficulties in connecting language with emotion in reciprocal communication with others.

That is a reciprocal social communication element most often required to thrive in this world we live in.