Sunday, February 21, 2010

Removing Severely Autistic from the Autism Spectrum

The DSM 5 promotes the stigmatization of low functioning persons with autism disorders by excluding any reference to cognitive  or intellectual disabilities in its description of  the new categories of autism spectrum disorders.  The mainstream media has long ensured that such stigmatization prospers in the popular culture by focusing on stories of great feats by some persons with Aspergers and Autism while steadfastly ignoring the plight of the severely autistic persons living in institutional care.  In a similar vein every protest by even a handful of persons with  Aspergers and High Functioning Autism,  of "negative" depictions of autism, depictions of the realities of life faced by the severely autistic, is promoted as enlightened self advocacy by a largely autism ignorant mainstream media.

The mainstream media continues its obsession with high functioning autism and Aspergers  in discussing the autism changes in the DSM 5 with article after article about how the changes will affect those with Aspergers.  Some of that attention to the potential impact  on persons with Aspergers is certainly warranted but not to the point of refusing to  consider the impact of the DSM 5 changes on those at the severely affected, low functioning,  end of the autism spectrum, those with Autistic Disorder and Intellectual Disabilities.  

The fact that between 75 and 80% of persons with  autistic disorder, as it is currently called, the category comprised of the original pre-1994 DSM change  "autistics", also have intellectual disabilities is hidden completely  from sight in the DSM 5.   One of the signposts of stigmatization is when it is not considered polite to mention some persons or topics in polite company and the DSM 5 has ensured that the stigmatization of persons with autistic disorder and intellectual disability will continue.  

The DSM 5 pretends that ASD and ID  are unrelated, that delay or inability in understanding language is not itself  indicative of a cognitive or intellectual deficit, and  by pretending that the 75-80% of persons with cognitive disorders AND assessed  intellectual disabilities is just an amazing coincidence, one not needing discussion; one not needing  mention in the diagnostic  manuals used by psychiatrists, psychologists and general practitioners.  It is only a matter of time until persons with Autism Disorders and Intellectual Disabilities are officially excluded from the Autism Spectrum of Disorders category of the DSM.

The mainstream media has responded to the proposed changes by obsessing over the impact on those with Aspergers and, with few exceptions, ignoring the impact of the changes on the lower functioning persons with autism, those with intellectual and cognitive deficits.  The headline of one an AP article (which is one of the more balanced articles on the autism changes) highlights the media focus in reporting DSM 5 autism changes:

This humble blogger, and father of a 14 year old son with Autistic Disorder and profound developmental delays,  was interviewed and quoted by Lindsey Tanner  in the above noted AP article.  I appreciate her effort to provide some balance to the discussion but even that article, as the headline indicates, is focused primarily on the impact on "Aspies" of the DSM 5 autism changes.  Few other media articles showed that much balance. Not a single article focused on what  impact the changes would have on those most severely affected by autism disorders.  

Both the DSM 5 and the mainstream media have adopted a perverse triage system when it comes to discussing autism disorders. The highest priority is given to examining the impact of  official diagnostic labels and criteria on those least impaired by autism disorders first and foremost and examine the impact on those most affected later ... if ever.

The DSM has, in the DSM IV and DSM 5, been changed to expand the definition of autism to include those with Aspergers, those at the high functioning end of the autism spectrum of disorders.  Some at the high functioning end do not consider their condition to be a medical disorder even though they embrace medical terms like Autism and Aspergers. Meanwhile the original autistic persons of the DSM III are increasingly stigmatized, rendered invisible by failure to mention the most salient and disabling features of their disorders ... their intellectual disabilities and cognitive impairments.  The stigmatization of intellectual disabled, low functioning autistic persons is clearly illustrated in the Lindsay Tanner/AP article;

Liane Holliday Willey, a Michigan author and self-described Aspie whose daughter also has Asperger's, fears Asperger's kids will be stigmatized by the autism label — or will go undiagnosed and get no services at all.   Grouping Aspies with people "who have language delays, need more self-care and have lower IQs, how in the world are we going to rise to what we can do?" Willey said.

The expansion of autism in the DSM IV and DSM 5 to include more and more persons barely impacted by autism will result in more identifcation of autism with giftedness in the public mind and the severely affected will be even more completely removed from public discussions of autism. It is only a matter of time until those with autism and intellectual disability are officially removed from the autism spectrum completely.  It will probably happen officially  in the DSM 6 but it is already well under way. 

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farmwifetwo said...

They are 2 separate dx's... even the special ed guy I've been dealing with lately knows that and acknowledges it. That's why I have to put developmental delays to our "exceptionality" along with autism. I have more psychometry stuff to fill in before Mon... I'm enjoying being able to write "does that" after years of "can't do that". We're headed for a specialized classroom - they have slow learning classrooms for those with LD's... not MR or autism... By Sept we plan to be in one. We're teaching our severely autistic child.

His comment and I quote "those with only Intellectual delays never make many changes over the years. Those with autism, the outcome is uncertain." I am very impressed he realizes this... most people don't.

My son has severe autism... my son is not MR.. Unless you actually believe the IQ tests which - and spec ed admits it - are a waste of time for those with autism. He has a significant language delay but every day he learns more and more and sometimes the gains are small... sometimes the gains are large. Don't ever show him something you don't want him to do... b/c he'll master it quickly. Especially anything mechanical.. his rote memory is unbelieveable. To automatically tar him with the "he has severe autism therefore he's severely mentally retarded" ignores all those non-verbal autistics that prove time and time again they are very smart, if you're willing to go through the autism to the individual inside.

Sorry... no sympathy here... I recommend you toss out your son's IQ test and instead look at what he knows and what he's accomplished instead.

Ian MacGregor said...

Farmwifetwo. Intellectual Disability is not necessary to receive an Autism diagnosis, but it is far more common in those with autism, than the normal population. Just because your son does not have an Intellectual disability does not mean others with autism do not as well.

My daughter is definitely autistic based upon any of the current psychometric standards. She is also quite intellectually delayed. I agree there is a potential problem with standard I.Q.tests and those on the spectrum, but not have to give children the Stanford-Binet battery of tests to realize so many children with autism are intellectually disabled.

It is also true that those with true ID do not make the leap there more high-functioning peers do, even though early on they may both appear to have similar intellectual struggles.

It seems as if you are eager to have children such as mine dropped from the spectrum. I predict as things keep progressing we will all find ourselves on the spectrum and significant intellectual disability will affect only 2.5% of those on the spectrum just as it does the entire population.

Sympathy is not required. Autism causes children's brains to develop abnormally. For some this may mean some loss of social skills, for others it means significant delays, and a life dependent on the kindness of society. This goes beyond being non-verbal.

Having an ID does not make someone unteachable. It does mean the person learns at a slower rate,and or retains less of what they learn. I don't think anyone is giving up on their childrens' future, but there is a concerned that funding to help those most negatively impacted by autism will dwindle, if it is presented is only positive terms.

Adrianna said...


We get it. Your son isn't mentally retarded. We got it the first hundred times you said it. The problem is, no one said every single person with severe autism has MR. We simply said that intellectual disability was more common in people with autism than in the general population, which I wouldn't have to explain to you if you knew anything about statistics.

Like Ian McGreggor said, you don't need an IQ test to determine whether or not someone is mentally retarded. Pardon the pun-it doesn't take a genius to notice if someone is lagging noteicebly behind in every area of cognition and development.

For someone who complains all the time that people with high functioning autism assume that all autistics are just like them, this is more than a little hypocritical.

Barry Hudson said...

Hi Harold,

I also fear the change in diagnosis definition will marginalize the more significantly afflicted, something I think is patently wrong since this will make the provision of correct supports for their needs less likely making us (society) simply repeat the errors of the past. It is not an issue of pity that some claim, it is, to me, a matter of respect for another human being. The more marginalized the less the respect. It could also potentially lead to a “different” diagnosis in the future that could prevent the severely afflicted from getting the right services for their needs (i.e.: they would be deemed beyond help). After where we were to simply regress in our perspective is something I do not understand.