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January 31, 2012

DSM-5 Autistic Spectrum Disorder Disaster

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Has the American Psychiatric Association (APA) Lost It’s Collective Mind? Have the “36,000 Physician Leaders in mental health” ignored history? After all, decades of autism research show self-injurious behavior is a hallmark trait of severe autism.

Hundreds of research studies have been published on autism and self-injurious behavior. Hundreds of papers are written about autistics who present with self-injurious behavior. Thousands of experts have discussed the challenges of self-injury among autistics. Yet, today, you see no mention of self-injurious behavior in DSM-5 autism diagnosis.

Yes, the modern mental health leaders of the APA would have us believe autism with self-injurious behaviors doesn’t exist.

I call into question the professional integrity of some involved in pushing the autism diagnosis of the DSM-5. Indeed, the revised autism diagnosis illuminates the work of scrambled, shuffled and compromised thinking—the work of individuals who know little, or don’t want to know much, about autism with self-injurious behavior, but would have us believe, they do. They don’t.

This over-intellectualized mess believed—by some— to be a diagnostic masterpiece in making, is insulting to severely-autistic community. I don’t know what the alleged professionals revising DSM drink when sitting around conference tables to discuss autism diagnosis, but someone should investigate. It’s not Kosher.

Furthermore, we must ask:

Why does APA include “flapping fingers” in Asperger’s Diagnosis, but omit “flapping fingers” from autism diagnosis?

Why does APA omit self-injurious behavior from Level One (most severe) category of autism spectrum disorder?

Why does APA create a new category called: “Non-suicidal self-injury,” which excludes persons with autism and self-injury?

Why does APA ignore clear, common traits and characteristics of low-functioning autism?

Studies show High-functioning autistics may struggle with self-injurious behaviors. So, are we to forget autistic people may have self-injurious behaviors? APA hopes we’ll forget and drift into Abstractland.  

Does APA forget some autistics have aggressive outbursts? Yes, they’re probably drinking around that darn table again.

Are we to forget that severe behaviors are, and have always been, a hallmark trait of severe or “classic” autism? No, we should never forget. Also remember: SIB is NOT a hallmark trait of high-functioning autism, but it CAN be an issue.

Is the APA scared of addressing autism and self-injurious behaviors due to challenges, costs and complexity of treating self-injurious behaviors among autistics? Yes. Yes. Yes. Research shows an embarrassing failure of treating self-injurious behaviors among autistics.

Why would APA try and shift severe autism with behavioral issues into an ‘intellectual disability’ category, especially when high-functioning autistics and highly-intelligent NON-autistics exhibit self-injury?

Hence, Self-injurious behavior disorder isn’t rooted in intellectual ability.

Are some professionals who work with autistic children terrified and contemptuous of severe behavioral issues? Yes. Do some professionals prefer, even demand and orchestrate, working with ONLY the highest functioning autistics with mild to no behaviors because it makes their job easier? Yes. Yes. Yes.

Are college students being taught to view autism from a false definition? Yes.

What’s happening to research on autism and self-injurious behavior? It’s disappearing. Autism research today focuses on high-functioning autism with few behavioral issues.


Has the autism diagnosis been romanticized by movies and news? Yes. Not one Hollywood Producer has shown the courage to tackle severe autism with severe behavioral issues.

Do some Directors of Autism Clinics lack skills to discern different levels of autism? Yes.


For instance, let’s take a look at one recent statement from a Kirsten Schaper.  Schaper is a speech-language pathologist and Director of a small Autism Clinic in Illinois:  We do have a lot of referrals for [autistic] kids for challenging behaviors, tantrums, head-banging, aggression, self-injury, but these are not characteristics of autism spectrum disorder," Schaper said.

Shape up Schaper, you don’t know what you’re talking about…

“Self-Injurious Behaviors in AUTISM have multiple topographies with different biochemical and social environment causes and effects. The most common topographies of these behaviors include, but are not limited to head-banging, head-hitting, face-punching/slapping, hand-biting and excessive self-rubbing and scratching…”  (Edelson, 1999;


Schaper’s ignorance of behaviors in autism is astonishing. Autism presenting with behaviors is out of Schaper’s league of expertise so she pretends behaviors don’t exist among autistics, and hopes, with revisions to diagnosis, these autistics will become someone else’s burden. 

Historical evidence of self-injurious behavior among autistics has been studied for years. We must never forget it, as these autistics need extensive support and tolerance, lest they be cast into abstract jargonland and forgotten. I would hope, given unique connections, the highest-functioning autistics, as well as persons with HF Asperger’s, would be advocates for severely-afflicted autistics who can’t advocate for themselves.

  1. Autism Research Review International, 2001, Vol. 15, No. 4, page 3. Controlling
    self-injurious and assaultive behavior in autism. Bernard Rimland, Ph.D.
  2. Fact sheet on self-injurious behavior and Autism .... Auditory integration training
    has also been shown to reduce sound sensitivity (Rimland & Edelson, 1994).
  3. Characterization and Treatment of Self-Injurious Behavior. ... Source:
    Journal of Autism and Developmental Disorders, v30 n5 p447-50 Oct 2000
  4. Risk factors for self-injurious behaviors among 222 young children with autistic
    disorders. Journal of Intellectual Disability Research , 47, 622-627.
  5. Some argue an autistic person who exhibits self-injury is intellectually disabled, yet we find High functioning autistics and people with Aspergers struggle with self-injurious behaviors.
  6. Jan 1, 2002 ... It also serves as an illustration of how aggression and self-injury can be ..... The
    changes in these behaviors in individuals with both Asperger's ...
          Source: ajp.psychiatryonline.org/article.aspx?articleID=175265
      7. Asperger syndrome is often considered a high functioning form of autism. ... to
people;      odd or peculiar speech; Has behavior that may lead to self-harm ..www.nlm.nih.gov/medlineplus/ency/article/001549.htm
     8. Aspergers diagnosis in adults will come from symptoms such as violent
outbursts, hypersensitivity to sensory stimuli, rituals, self-injurious behavior, odd …....www.aspergersnews.com/Aspergers-Diagnosis.html
     9. Self-injurious behavior is one of the most devastating behaviors exhibited by
people with autism ..... Journal of Autism and Developmental Disorders, 18, 99-117.
    10. injurious behaviors are one of the most concerning forms of lower-level repetitive stereotypic behaviors (RSB) (Bishop and Kleinke, 2007)

11. Allen Frances: “Severe, classic autism is clearly defined and absolutely unmistakable. But, at the milder end of its spectrum, autism has inherently fuzzy boundaries merging imperceptibly into many other childhood mental heath, behavioral, and learning problems and is also difficult to distinguish from the individual differences that are a normal and (even desirable) result of human variability”. Huffington Post
12. In most cases, though, severe autism is marked by a complete inability to
communicate or interact with other .... Journal of Autism and Developmental
Disorders.  Source:
www.mayoclinic.com/health/autism/.../DSECTION=symptoms -


13. Autism Research Review International, 2001, Vol. 15, No. 4, page 3
Controlling self-injurious and assaultive behavior in autism
Written by Dr. Bernard Rimland, Ph.D.
Autism Research Institute
 "Nothing is more difficult for the parents of autistic children to tolerate than self-injurious and assaultive behavior (SIB/A). SIB/A behaviors are unpleasant to observe, to think about, or to discuss, but they do exist, and must be dealt with. Some autistic children hit their heads against walls or floors so hard that they have fractured their skulls, detached their retinas, or caused deafness. Others hit themselves with their fists or their knees so hard that they have broken noses, deformed ears, and even blinded themselves. Some children bite themselves and others, and hit other children and their parents with such violence they have broken bones."
WAKE UP APA...please, wake up. Researchers who devote their time and effort into studying autism and self-injurious behavior deserve some credit. You can't ignore their research.

While some people with autism are mildly affected, most people with the condition will require lifelong supervision and care and have significant language impairments. In the most severe cases, affected children exhibit repetitive, aggressive and self-injurious behavior. This behavior may persist over time and prove very difficult to change, posing a tremendous challenge to those who must live with, treat, teach and care for these individuals. Source: http://public.tgen.org/tgen.org/downloads/autism/AutismFAQ.pdf

Treatment of Autism Spectrum Disorders. .... Catherine E. Lord, Ph.D. ...... Problem
behaviors may include but are not restricted to self-injury, aggression, dis- ...www.nationalautismcenter.org/pdf/NAC%20Standards%20Report.pdf

September 27, 2011 by autismsciencefoundation ... York Institute for Basic
Research); Dr. Catherine Lord (New York Institute for Brain Development); Dr.
David Mandell (University ... His primary focus is repetitive self-injurious behavior
(SIB).
autismsciencefoundation.wordpress.com/.../dr-joseph-buxbaum-and-dr-bryan-king-join-our-sab/ -


Autism Research Institute | Autism is Treatable ... Self-injurious behavior often
refers to any behavior that can cause tissue damage, such as bruises, redness, ...
www.autism.com/ind_self-injurious_behavior.asp -

Behavior analytic research on dementia in older adults. .... treatment for the self-
injurious skin picking of a young man with Asperger syndrome. seab.envmed.rochester.edu/jaba/articles_selected/


8 comments:

Rina dhadra said...

A very interesting article. I only know the autism you refer to as opposed to those with high functioning autism. I was completely unaware of this new classification and the so called authorities on the matter and their seeming denial of severe autism.

Autism Reality NB said...

Thank you for posting on this important subject.

Beth said...

Kim:

You are the only other person I have seen who has noticed that some professionals like to "cherry pick" who they work with. This is one of the main reasons I am homeschooling my severe child now. The professionals were a bigger source of stress than help-the opposite of therapeutic. I think the ideal is "passive,flexible and high functioning" even in some NT classes and this intensifies in the SE classes. My son is never all three of these, but I don't feel that anyone is. Yet, some seem to expect this severely autistic teenager to adapt to constantly changing scenes and schedules and "feel resentful and terrified" when he can't handle these ( to use your words!). Thanks for your post and the chance to vent myself to someone who understands..

Anonymous said...

There are many in the mental health community who are upset with the proposed DSM-V and we have written petitions etc. It may not change the final draft but we can only hope that it will...in addition to changes in this area, the proposed DSM-5 will label those who are depressed 2 weeks after the death of a loved one with major depression. I would have fit that one...oh and ADD/ADHD is going to be expanded so just about anyone would fit the proposed criteria. I think they need to throw the whole DSM-V out, keep using the DSM-IV and get different people working on it.

Kim Oakley said...

It's great there are many autism researchers and professionals who work with autistics who suffer from self-injurious behavior that are speaking out about the proposed changes. More of their voices and expertise should be heard. They are the real expert professionals, since that is their speciality. Catherine Lord does not specialize in autism and self injurious behaviors.

Dr. Ralph Ankenman said...

That DSM can sometimes lead physicians down the wrong path is not new with DSM-V. DSM-IV lead to a false epedemic of bipolar in children; a forty (40) fold increase!

Aggressive or violent behaviors in some autism (and bipolar) patients have been successfully eliminated with non-psychotropic drugs.

Search on keywords "adrenaline system overreactivity ankenman".

Laura B said...

I am autistic. I have looked up many descriptions of autism from mild to profound. I am going to write my own diagnostic criteria based on myself and my research. I will put my criteria on my website. If there is a way to influence the APA's criteria let me know. My website is http://www.thisisautism.net. My criteria will definitely include SIB. I will have an epilepsy specifier [i.e. Autistic Disorder with Epileptiform Seizure Disorder[s]]. Since SIB can be triggered by seizures I might have it as a specifier on the SIB section [i.e. Autistic Disorder with SIB triggered by Epileptiform Seizure Activity].

strawberriezxo said...

I also only know the autism your talking about,(im using my daughters acc.) my son is 29yrs old and has severe autism with sib, he is non verbal he also had sezures till he was 16 yrs old. Kim i have read and seen all your videos you are my hero!!! I thank you so much for all your information. If you can please contact me @ http://www.facebook.com/profile.php?id=100000427889197
Keep Writing We are Reading!!
sheila

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