The diversity of Autism Spectrum Disorder

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I agree, but it's been a misconception, not based on facts. Not unlike many other incorrect perceptions such as the commonly repeated mantra that autism speaks is attempting to speak for autistics whom speak can speak for themselves, when the comment as provided and described on the website of Autism Speaks, was designed as a moral booster to give families that felt disenfranchised a voice, whom had children with regressive autism that lost the ability to speak.

Non-verbal (lack of ability for verbal communication) symptoms have never been a mandatory requirement for DSM diagnosis. It's still an issue for some estimates at 25 to 30% of individuals diagnosed with autism disorder, with higher statistics reported, per the CDC at 40%, so there is close to a 1 out of 4 to 3 chance that this is going to be a major disability for an individual diagnosed with Autism Disorder, per a current diagnosis.

I'm of the opinion that the DSM5 organization discarded the non-mandatory non-verbal criteria, in their basic criteria for Autism Spectrum Disorder, that describes a core symptom for a significant portion of individuals with autism spectrum disorders, for brevity, rather than consistency, per severity levels 2 and 3, that address verbal communication and non-verbal communication impairments as requirements to meet those severity levels. Leaving the door open for those that do not speak at all, to be described as such in those severity levels per clinical records, specific to the severity levels.

I think it's a mistake to criticize the new DSM in terms of how it will affect people applying for services. The DSM should be a reflection of our best current knowledge about mental disorders, and laws should be written to work around that.

Take ASD vs Social Communication Disorder: these experts have apparently decided that some people now diagnosed with PDD-NOS are not truly on the autistic spectrum, and should be moved to the new SCD diagnosis. They are still being recognised as having problems, just slightly different problems; perhaps they only have one or two of autism's 'triad of impairments'.

This may seem like semantics to some, but keep in mind that the DSM is used by researchers as well. For people trying to study the causes and neurological differences behind autism this separation would be crucial.


You say that people moved to SCD may lose access to services, and you may be right, but it seems backwards to change our definition of disorders to better fit the service system. Instead our treatments should be changed to reflect our growing knowledge about these disorders. There is still time before the DSM5 becomes official to make some small fixes to current laws and to look at what more significant changes might be warranted (if lawmakers can get their act together which, granted, is not a certainty).

Experts have decided that these people with SCD are not on the autistic spectrum, and so to change the criteria for ASD to fit them would be a 'white lie' to get them services. I think this is a mistake and it is the service system that needs changing. The current service system was written around the DSM IV, so it makes sense that there would need to be changes made when the DSM IV is replaced

You can argue that people moved to SCD in fact do have autism, and you may be right, but expert professionals seem to think otherwise. I firmly believe that having ASD makes your opinion on this subject valuable, but does not make you a substitute for an expert.

The concern per the re-diagnosis and move of some to SCD and the loss of continuing support efforts provided by the government and the law, is a concern reported by the ASAN. It is a valid concern, per the laws as they exist, but I do think it is reasonable per PDD NOS that the triad of social/communication/RRB's are now going to be made mandatory requirements along with non-verbal communication impairments.

I agree the proper route will be to change laws as they exist, and would expect the government to provide reasonable efforts to do so, per the time frame that will be provided after the final revision is publicized. The government at this point has no direction for changes until that final revision is made. Where the real problem may lie for some is among private insurers, some of whom are currently required to provide coverage for expensive ABA therapy for those currently diagnosed with Autism Spectrum Disorders, including PDD-NOS.

I think the chances of the DSM5 organization making the changes that I linked in their quote in my post, close to zero, in that what they are asking for would mean that non-verbal communication impairments would not be a mandatory requirement, thereby moving Autism out of the territory as a disorder of communication, both non-verbal and verbal.

My argument is mostly a semantic one, per logic and consistency, as a non-expert in the actual subject matter.

It is not reasonable per the research that had already been done to the point of the DSMIV, that the criteria for non-verbal communication impairments were not a mandatory requirement of ASD's. It is not a mandatory requirement in either the DSMIV definitions of Aspergers or Autism Spectrum Disorder, that have identical 2 out 4 requirements for criteria elements associated with Social Interaction impairments, including that non-mandatory criteria of non-verbal communication impairments.

Nor are verbal delays in the development of language or the lack of the ability for spoken language a mandatory requirement, per that criteria in the communication impairments category of Autism Disorder.

And, hypo/hyper reactivity to sensory input was not a criteria in any of the disorders, nor motor development delays seen as part of the criteria in the Gilberg and ICD10 diagnostic manuals.

My point is that verbal delays in the development of language and/or the lack of the ability for spoken language are defining characteristics of subgroups of autism spectrum disorders, particularly regressive autism as much as hypo/hyper reactivity to sensory input is among some individuals currently diagnosed with ASD's.

However, neither of these two criteria are specific to ASD's as Disorders nor are either universal traits seen in ASD's. This is used as the rationale by the DSM5 work group, quoted in a couple of posts previous to this one, to exclude the long standing non-mandatory criteria of verbal delays/ lack of ability for spoken language in the communication impairments category for ASD, but at the same time they are adding an additional criteria per hypo/hyper reactivity to sensory input that is also not specific to ASD's or a Universal trait seen in ASD's.

I do think it is an excellent decision to add this new sensory related criteria, but the rationale to remove the older longstanding non-mandatory criteria, is not a logical one, based on what could be a similar logical rationale for refusing the addition of the new sensory associated criteria.

I do believe their nomenclature in severity levels 2 and 3, requiring both verbal and non-verbal impairments, remedy the situation where there should be no reasonable concern per those individuals with impairments that rise to the severity of not being able to speak at all, but the basic criteria ignores regressive autism per the lack of speech that is studied as an inherent part of autism for that sub-group as well as others, in the overall current diagnosis of autism disorder.

A large study done recently reflects abnormal brain growth specific to males with the condition of regressive autism that lose their ability for speech, vs all other groups of children with ASD's.

My opinion is that they should continue to include this long standing criteria in the basic criteria of the new Autism Spectrum Disorder, in acknowledgement that it is indeed an inherent part of some subgroups of autism, this potential change would present a problem per their current diagnostic structure that make all three criteria, per the social communication category mandatory.

Therefore, my comment and suggestion provided to the organization is to add another sub-category under the Social Communication category per a 1 of 2 requirement for the criteria of the verbal communication impairments and the criteria for the non-verbal communication impairments, and then provide another sub-category of Social communication for the 3 of 4 existing social interaction criteria that both Aspergers and Autism share under the DSMIV, excluding the existing non-verbal communication impairment moved to the first subcategory with the long standing verbal communication impairments.

Of those remaining 3 current social interaction criteria, placed in the new subcategory under social communication disorder in the DSM5, 2 out 3 would be required.

One of those criteria addresses developing and maintaining peer appropriate friendships and the other two address social reciprocity. They've combined the two criteria associated with social reciprocity in the current revision of the DSM5 in the Social Communication category into one, but it would be easy to reclaim them as two separate criteria.

As it stands, I think there is zero chance that the ASAN organization is going to get what they are requesting per the unlikely-hood that the DSM5 is going to keep non-verbal communication impairments as a non-mandatory requirement; but the additional issue, per ASAN's concerns is that there are a significant number of individuals diagnosed with Aspergers that do manage to adapt over time to develop and maintain peer appropriate friendships in adulthood.

As it stands now, a significant impairment is going to be required in this criteria as a mandatory requirement for re-diagnosis or a new diagnosis per the DSM5.

While some diagnosing professionals may overlook those acquired social abilities in developing and maintaining peer appropriate relationships, if they play by the diagnostic rules there are some that will not be diagnosed and there are some that will lose their diagnosis based on this one criteria, per developing and maintaining peer appropriate relationships, that is currently not a mandatory requirement in either an Aspergers or an Autism Disorder Diagnosis.

If that is the only criteria preventing them from retaining or gaining an Aspergers diagnosis they will likely be put into the SCD diagnostic category. Problem is though, that if they have all of the other required social communication impairments as well as the required RRB's, and potentially the new criteria per sensory issues, they are going to be put in the wrong diagnostic category, because they would otherwise exceed the requirements to meet a diagnosis of Aspergers per existing diagnostic criteria without that one mandatory requirement, as well as likely meeting or exceeding diagnostic requirements per the ICD10 and Gilberg criteria for Aspergers.

The ability to develop and maintain age appropriate friendships, is highly dependent on many factors out of the control of the individual with social communication impairments. It is more likely than if one finds a niche in life, where there are personalities that are more compatible the odds go up for adaptation, whereas if there is not that niche in life, and a potential demographic to develop and maintain friendships the odds go down per that potential adaptation.

It's not likely that many diagnosing professionals will play by that strict rule, in the real world, so the diagnostic criteria might as well reflect a more reasonable approach per the current revised mandatory requirement to meet that criteria.

Just as a potential example those folks at the headquarters of ASAN may maintain close friendships with each other per their niche, but some might neither develop or maintain relationships if they were removed from that relatively comfortable life niche.

Significant impairments in developing and maintaining friendships is another inherent problem of ASD's that the majority of individuals share as a criteria for the diagnosis, but it is not a universal trait per ASD's or a mandatory requirement in any diagnostic criteria that currently exist in the world for any Autism Spectrum Disorder.

I think the DSM5 may be sacrificing reason for brevity in their decision to make that a mandatory requirement as well as excluding the long-time standing non-mandatory communication criteria that addresses verbal delays and the lack of spoken language as an inherent part of autism spectrum disorders for subgroups of individuals diagnosed with the disorders.

What makes my argument one that is not very compelling for actual change is that these current revised changes are not likely going to negatively impact anyone currently diagnosed or future diagnosed with autism spectrum disorders per language delays or the lack of spoken language; the change would be based on retaining consistency per their nomenclature in severity levels one and two, and acknowledgement that the criteria remains an inherent symptom of subgroups of autism spectrum disorder.

In real life, per the mandatory requirement for significant impairments in developing and maintaining friendships, as stated before, there aren't likely going to be many diagnosing professionals that exclude someone from a diagnosis, because they don't meet that one criteria, regardless of what the diagnostic manual says to do.

It is not a practical real world mandatory requirement, per variable environmental social circumstances. But if one wants to provide a realistic diagnostic procedure I think it is worth the time and effort for the DSM5 organization in consideration of the change back to a non-mandatory requirement for that specific criteria, which would require the other change I suggested as well to keep non-verbal communication impairments a mandatory requirement per most every diagnosis.

It's highly unlikely that an autistic person without the ability to speak is not going to also have significant non-verbal communication difficulties, so in most every case those individuals should meet both verbal and non-verbal criteria in the new suggested sub-category. This is also, in part, reflective of the DSM5 revision requirements in severity levels 1 and 2, per the nomenclature of the requirements for verbal and non-verbal communication impairments.

I found the information that you posted very informative.

I have seen 'natural' parallels in ASDs and groups of non-autistic individuals which may have some bearing on 'why' ASDs can be somewhat more difficult to detect amongst these groups( it's not all a result of lack of access). It does explain certain cultural components...paired with developmental stages. I'm curious to know the racial breakdown across the spectrum; pieces of the puzzle are held here BUT people are understandably reluctant to pursue it.


TheSunAlsoRises

Unfortunately the only racial breakdown provided by the CDC is specific to a limited demographic among children at the age of 8, in classes for the developmentally disabled across the US. In that demographic the breakdown measured among identified race, is close to even.

I suspect the overall spectrum is strongly influenced by similar cultural factors, that historically have provided the potential for the general domestication of human beings, along the lines of the theory proposed by Lehmann, in the link above. The cultural factors that apply outside of the classes for the developmentally disabled are likely significantly different.

"Nerdiness", has become more accepted among males at about the same rate of Information technology advancements, across countries. I like the example of South Korea where martial arts was once the focus of machismo and now it is the "video gamer rockstar" that is the cultural icon. Physical prowess does not hold the same value across some cultures, as it once did.

Autism Speaks is providing a much more thorough statistical survey among the full population of the US. Just in time before the DSM5 goes into effect. It may provide some of that demographic information you are interested in, per the entire spectrum, that may be almost impossible to come by after the DSM5 is solidly the standard in the US.

Per the NAMI organization, there is still a strong cultural aversion among some African Americans against doctors, and anything associated with a psychological diagnosis, per some of the unfortunate experiences still not to far in the memory of some, per government organized medical research. And there are other subcultural factors at play as well, some not politically correct to discuss, but hard to ignore per observable subcultural realities.

The race issue is definitely a difficult one to pursue, but I suspect culture plays the largest part per my experience in military civilian employment. The military environment breaks down many stereotypes, that were common to my local community, in the deep south, inside and outside of the boarders of the US, into areas like the Caribbean, Saudia Arabia, and East Africa.

One quickly finds out that there are different cultures that strongly impact human behavior, but only one race per humankind, as far as characteristics of intelligence and general behavior.

One reason that I was glad that Obama was elected, is he has provided the US a microcosm of how little pigmentation counts in the grand scheme of life. A real-life lesson for some that are still caught up in cultural stereotypes, but a hard one as well, for some. The lesson and example though is one for all cultures in the US, regardless of pigmentation. There are no strict limitations for human beings per pigmentation, or geographical ancestry, when it comes to the highest levels of what is understood as human achievement.

And I suspect Obama has a few autistic-like traits, as well. Perhaps hidden better under the stereotype, and in part, subcultural requirement, of the rare African American Nerd/Aspie.

He takes Erkel up to a place that could not have been imagined, not too many years ago. And not too many years before that, when idea of an Erkel could not be imagined by some, per cultural expectations and stereotypes in the US.

It reminds me too of the Revenge of the Nerds Movies, where the only African American Nerd, was portrayed as effeminate, as well as Nerd, and eventually provided his fraternity protection of the physical prowess associated with another African American Fraternity.

One of the most interesting transformations in my community though, which also shows the power of culture over pigmentation is what is the new generation of the "redneck sub-culture" in my area, that has moved into the hip-hop genre, from the country music genre. They can relate to many of the same cultural issues that inspire the music; regardless of pigmentation, white, red, or dark.

I had an African American female friend when I was young, that had that same little professor voice, that has no culture, race, or geography. I too, had no ability to pick up my own cultural dialect. I lived in the same area most of my life, as well as my friend, and continued to get the question throughout school of, where are you from. I'm sure she did as well.

As far as human beings go, I did not have the same ability my classmates had to negatively discriminate against others whom were different; I suppose that might have been some type of neuro-developmental blessing, because I did not have the ability to negatively discriminate against myself either. I could not see the limitations in others or myself. As I look back, my friend seemed to share what seemed like an unusual characteristic as well.

If I had the vision to see the reality of my limitations, I would likely not have survived.

Perhaps that is part of Obama's success as well as many others that meet adversity; but I'm not sure that it is entirely a culturally based inclination, or one limited as specific to autistic like traits.

But, it is a powerful human phenomenon that I believe moves beyond any physical prowess, or commonly measured intellectual strength. Perhaps it is a deficit, that for some becomes advantage.