Sunday, May 06, 2012

DSM5's Most Fundamental Flaw? Combining The Autism Disorders Into One Disorder

Autism Advocate Ari Ne'eman Speaking At the National Press Club
My  son's severe Autistic Disorder is not the same 
autism disorder as Mr. Ne'eman's.

The DSM5  autism do-over, the New Autism Spectrum Disorder, will come into effect in 2013.  There is a further opportunity to offer public comment about the radical changes being forced upon the public but the DSM5 committees who have shaped the New ASD in the image of their own research biases have shown no inclination to acknowledge the merits of any of the many criticisms of their handiwork. It does not matter whether the criticism comes from expert professionals involved with shaping previous editions of the DSM (Fancis, Volkmar)  or a stumbling, ignorant, hysterical father (moi) of a severely autistic son who has lived first hand, 24/7 for 16 years,  with the realities of severe autism and who objects to the targeting of the intellectually disabled for exclusion from the New ASD. No matter the source the  DSM5 team has not flinched and has not deviated from their own research biased views of autism.  (The DSM5 team swears that the New ASD reflects solid autism research. DSM5 autism team member Catherine Lord though  has acknowledged that autism research tends to excluded those with intellectually disability  while also confessing that the real aim of the New ASD is to exclude those same intellectually disabled from autism diagnoses.) The biggest flaw is not the possible exclusion of some at the highest functioning end of the spectrum or the likely exclusion of many with intellectual disabilities.  It is the combining of disparate disorders into one.

The biggest flaw of the new DSM5 is the combining of the many autism disorders into one disorder when even the most ignorant, ill informed and irrational of persons dealing with autism ... parents ... can see that there are huge differences between those who  have fashioned careers as public spokespersons for all persons with autism and those who can not function in daily life.  

Ari Ne'eman is an intelligent, eloquent university graduate comfortable in discussing his vast knowledge of autism before assembled groups from the US to the UK.  This young man can hobnob with the intellectuals at the IACC, state and federal politicians in New Jersey and Washington and mainstream media representatives at the US National Press Club in Washington.  He appears to be very comfortable in front of media cameras. My son at 16 has accomplished much in terms of where he started but he is still working at a Dr. Seuss reading level, working with great effort to make a full sentence, lacks understanding of the world, engages in repetitive behavior that can end with self injurious behavior.

As a father of a low functioning autistic son I can not see the deficits that  resulted in an autism disorder for Mr. Ne'eman.  As an autism advocate who has worked with and met some higher functioning kids with Aspergers whose limitations are still noticeable I can not see those same limitations in Mr. Ne'eman. I do not believe that Mr. Ne'eman's professionally diagnosed autism disorder, or the autism disorders of the members of the corporate board oranized by the very high functioning Mr. Ne'eman have any similarity to my son's diagnosed Autistic Disorder or to those with Asperger's that I have met. Still Mr N. , like his ASAN board members presumably have diagnosed autism disorders. 

What is clear though is that Mr. Ne'eman's disorder is not the same autism disorder that I have seen in my real life, daily,  experiences as a father or as an autism advocate.  In the latter capacity I have met a number of persons with Aspergers whose diagnoses are clear to anyone who speaks with them but they are still different from my sons. They are also different from the severely autistic persons I have met on visits to psychiatric hospital facilities where they reside here in New Brunswick.

I am not suggesting that Ari Ne'eman does not have an "autism' disorder.  I am not qualified to say that and I recognize that and respect his professional diagnosis.  I am qualified, as an observant human being, to say that Mr. Ne'eman's challenges are not the same as my son or many others with Autism and Asperger's that I have met.  To me I see no signs whatsoever of a disorder of any kind in Mr. Ne'eman but again I realize I am not a qualified professional  and I assume that those who provided his diagnosis were capable professionals.  Mr Ne'eman's autism disorder though does not remotely resemble my son's or other persons I have met with autism and Asperger's disorders.

In the opinion of this humble dad the combining of the various autism disorders into one disorder is a fundamental flaw in the New Autism Spectrum Disorder. 


farmwifetwo said...

I think it's the best thing.

It'll get rid of the adults that aren't disabled. Yes, it'll get rid of the ID's. But you mistake ID for autistic if they can't pass the IQ test and I haven't managed to make you understand the difference.

My eldest per the child psych still qualifies for HFA. My eldest per the child psych will qualify for the social communication disorder not HFA in the V.

Along will the rest of them... WooHoo!!!

Unknown said...

FW2 said "Yes, it'll get rid of the ID's. But you mistake ID for autistic if they can't pass the IQ test and I haven't managed to make you understand the difference."

FW2 thank you for your usual comment about persons with ID. I have posted several comments with connections to authorities such as the CDC in the US and the Canadian Psychological Association which indicate that 70-80% of persons with Autistic Disorder, the original, classic autism, also have Intellectual Disabilities. CDC expert Dr. Yeargin-Allsopp described the intellectually disabled as the vast majority of those with classic autism.

Do you think that it is a coincidence that so many with classic autism are also ID? An Italian study which also found the same close connection argued that more study was needed of the Autism-ID connection.

Autism Mom said...

There are those who truly live with autism and those who merely crave the label. Common sense people know what's up and the individuals with a purely psychiatric diagnosis will be the recipients of the backlash that is to come as the anger grows from the masses over shrinking public funds.

Let them have their much coveted label. It does not change the battle for our son's life. Call it what you will but give him what he needs... for now, while it is still available.

Ian MacGregor said...

This week my daughter had her triennial IEP. The psychiatrist told us that she qualified for services as both autistic and ID. I told him that I thought ID was her more significant problem. At 15, her developmental age remains between 2 and 3.

The psychiatrist responded, that her behaviors and mannerisms are very clearly autistic, and that her autism gets in the way of her mental processing.
He went on to say her ID and autism are wrapped up together.

She is certainly suffering from a different condition that one who is HFA and knot lumped with them into the same diagnosis. It would have been better if the HFA individuals were moved in Aspergers instead of the other way around.

Anonymous said...

Ari Newman is in no way autistic. And the Washington elites prefer it that way.