[Autism Speaks] Concerns/Recommendations to the DSM5 Org.

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Why not?
You could grade according to many different criteria, imo. Some examples:
- Ability to tolerate working environment
- Ability to communicate
- Severity of face blindness
- Severity of aversion to touch

I know for sure that there are different people with Asperger's... some have overcome a difficulty or another, others haven't... and so on.

In your post you are not grading by autism.

However if you wish to grade that way - then sure - just as long as the NT's agree to be graded in the same way.

But isn't Asperger's defined by a series of symptoms? So I think grading the symptoms would not be far off... would it?

And NTs have a thousand personality tests and stuff to grade themselves according to different criteria as well.

I think what I want to say is that I see no problem in grading how severe my symptoms are... I mean, the whole point of my diagnosis was self-discovery. But maybe some people have different, valid reasons to avoid being graded in such way? If so, I'm listening... guess I got curious

The diagnosis of Autism spectrum disorders only exists as a collection of criteria designed by groups of psychiatrists and other professionals in the mental health field, and defined and labeled how they see fit. Those criteria, definitions, and labels change through time, as they see fit through analysis of available behavioral data they have collected on human beings.

Human beings certainly don't necessarily fit the human construct of diagnosis, criteria, definition and label, or as in this case, the addition of severity levels, that psychiatrists and and other mental health field professionals have designed, but they have don't have much control over that.

Human beings with symptoms can only provide input to the DSM organization and hope that they consider it if they don't like the number system of grading severity levels. There have been three opportunities, to do that. That was your only opportunity to express your dissatisfaction in the use of numbers to describe the grading of severity levels.

No one else here has expressed concern or offense over the fact that numbers are used for the severity levels in the DSM5. Nor, has anyone expressed the concern that they are being labeled as a number. They are being labeled with a disorder, Autism Spectrum Disorder, with three severity levels, 1,2, and 3.

The majority of people here have expressed satisfaction over the consolidated label, but a significant number have addressed concern over the narrowing of the criteria. These are the similar concerns that Autism Speaks addresses in the topic recommendation.

Autism Speaks has nothing to do with the DSM's decision to use a numbered grading system for labeling the disorder. Their recommendation in this topic, has nothing to do with the grading system either.

Your unusual concern about being labeled as a number, is based on your perception of the labeling process. If you happen to be re-diagnosed there is no objective reason why you as an individual should identify with any number unless you choose to, or you perceive the process to be limited as such, as you appear to.

No adult is required to go in for re-diagnosis by DSM5 requirements, and as long as you don't need your medical information to qualify for benefits, there is no reason for you to label yourself with any disorder or qualifier of disorder if you choose not to.

But, the design of the diagnostic criteria, definition, labels, and severity levels are owned by the DSM5 organization per that diagnostic manual, and sold to diagnosing professionals; they own the copyright to their version of what is defined, described and labeled Autism Spectrum Disorder, severity level 1, 2 or 3.

You also have the choice to move to another area, using a different diagnostic procedure, if you had to be re-diagnosed under a different label than what you are currently under to receive some type of assistance.

Every person is unique; no two persons diagnosed under any psychiatric label are considered the same. And rarely does anyone choose to personally identify with a psychiatric label. Some people have chosen to do so, but it is certainly not a requirement of the psychiatric profession for anyone to personally identify with the psychiatric labels they define and describe, per depression, schizophrenia, Autism, or any of the other related diagnoses of mental disorders under the DSM5, of which Autism falls under the section titled neurodevelopmental disorders.

Your identity belongs to you, but the DSM is a trademark owned by the American Psychiatric Profession, whom has a copyright to all the information in that manual including the criteria associated with each label. Autism Speaks owns no part of that, and is not a part of any of the decision making process, other than input, that you as an individual were afforded the opportunity to provide that organization as well, per the DSM's open commenting periods, from the general public.

http://en.wikipedia.org/wiki/Diagnostic_and_Statistical_Manual_of_Mental_Disorders

Firstly the ASD people can do all those personality tests if they want.

Secondly I think your bit in bold is beautiful. You have discovered that you belong to the autistic spectrum neurotype and you are discovering what that means. That's great and if you have some problems like, dyslexia, IBS, OCD, LD etc etc then they should be recorded and you should recieve the same help for them as an NT would with the same problems.

So where is this need for grading?

I'll answer that. It comes from the NT's perspective of autism and the less said about that the better!
They make the bogus claim that the grading is needed to get the services we need but thats a 2 edged sword especially in these times of austerity the gradings can be used to deny services as well.

Goodbye aspergers yeah but don't replace it with a number. That is not a step forward and it is unnecessary and demeaning.

My my Aghogday, I'm not attacking Aut speaks (this time) so there is no need to get on your high horse.

However I was amused seeing you defending the psychiatric profession as well, but I won't allow you to distract me into that debate.

Regarding your comments about what other people here think, I'm really not bovvered. I'm ASD so I don't have that need to be part of the herd, even if its an ASD herd!
Also, even though I'm ASD I can read for myself and even count, thanks.

I simply do not see this need for autism to be graded as has been laid out in the sensible discussion I've been having with Mike.

If you have anything to say about the need for grading from the autistic perspective I will be happy to chat about that but please no more long wild tangents.

I described a process, not an endorsement of the result of the DSM5 definition of Autism Spectrum Disorder, I have also sent my own constructive criticism to that organization, that I shared in this particular part of the forum.

You suggested that low functioning people at Autism Speaks were behind the grading system of the severity levels, but they are not, that is clear in the topic comment that I posted for this thread, as they can only offer suggestions to the organization.

Some forms of autism are more severe than others. There has to be appropriate guidelines to describe this per diagnosis. Autism Speaks has suggested that the DSM5 falls short in this effort, in that the current guidelines are too restricted per what is described in the severity levels. This seems to be at least, part in agreement, with your criticism of severity levels 1, 2 and 3, per the new DSM5 diagnostic guidelines, per the diversity of symptoms and environmental circumstances.

With diagnostic criteria restricted to two general categories of criteria for a spectrum as diverse as Autism Spectrum Disorders, there is no option but to provide severity levels whether they are categorized as A,B,C,; 1,2,3; or I, II, III.

There was a suggestion by the ASAN organization to keep Social Communication Disorder as described as a NOS cousin of autism spectrum disorders, but there is probably zero chance of that happening, as well as close to zero chance that the organization is going to reduce the criteria down to 2 out 3 from 3 out 3, per the Social/Communication category of impairments, to in effect result in a disorder that requires no communication impairments verbal or non-verbal. ASAN and Autism Speaks shared that recommendation, as well as Autism Society of America.

I offered another alternative in my comment, listed in another topic in this discussion section, but of course I have no credentials, so it's not likely my opinion carried much weight.

My understanding is that you think they should have left things as they were, basically, such as what the ICD10 continues to do. At this point, if they stubbornly leave the current diagnostic criteria as is, without adjusting it to the concerns evidenced in past research, as well as the research that continues in studies larger than limited field trials, in my opinion what they had before is better than what they have now, because there is evidence that a significant portion of individuals may be potentially negatively impacted by this action, as well as a significant number of individuals that may be positively impacted.

I would hope that science prevails and the DSM5 makes some changes in the current diagnostic criteria/severity levels, that potentially benefits a larger number of individuals currently and prospectively diagnosed, however moving back to more than a description of one disorder, is likely not within the realm of possibilities, per the power and authority the organization has. So, what we are left with is severity levels, and at most the potential that the organization may provide a wider description of the disorder than what the current severity levels describe, as well as expanding the current restrictions on criteria.

Of course, the time for commenting on the actual criteria has passed, so we only speculate on what they might do based on the recommendations that have been provided to the organization.

ASAN and Autism Speaks are the only two organizations that have made those suggestions public, both available in this area of the forum. Unfortunately the DSM5 organization doesn't share the comments they receive with the general public. That would be interesting to see as they received thousands of comments over the 3 open periods where the general public, professionals, and organizations were allowed to provide input.

Oh dear, you seem to have chosen to ignore my plea for no more tangents.

Never mind as most of your post is just a regurgitation of the NT perspective of autism and I have heard this ad nauseum from people with much better qualifications to do so than you, I will ignore it.

As you have now had two longwinded monologs without mentioning anything I have actually said I think it should be safe to assume you have nothing to say about my idea.

There are however two points that I take great exception to.

1/ Aghogday speaks,
"You suggested that low functioning people at Autism Speaks were behind the grading system of the severity levels,"

I did not. That is a complete fabrication and I expect an apology. If this thread had been the ASAN response to DSM proposals my actual words would have been the same. There are many groups that want us graded in whatever way hence my opening comment, 'its pointless'.
That is my point of view, no matter what tinkering they do with the parameters, we will be graded and I don't agree with that.

IF Aut speaks were to gain enlightenment and not want us graded then they would stop calling us low functioning, I would stop retaliating by calling them low functioning and I would jump into bed with them. But that ain't gonna happen any time soon.

2/ Aghogday speaks,
"My understanding is that you think they should have left things as they were, basically, such as what the ICD10 continues to do."

Where on earth did you get that idea. You really do suck at mindreading as was also evidenced in your previous post to me about how you thought that I wanted to change my grade.

I have clearly stated that I am opposed to any form of the grading of autism.

Now I believe in equality so I would like to try a bit of mindreading, if only to show you how insulting it can be.

My understanding is that you are the type of autistic that takes great solace from your grading of High Functioning. My ideas about removing your fancy labelling horrifies you, whereas you can live with them changing it to a numerical grade.
When somebody in the future asks you if you are autistic you will be able to respond,'Yes, but I am a number one.'

From this conversation I realise that my proposal to suddenly remove your comfort blanket would be harsh. I do feel sorry for you so perhaps reducing the grades from a myriad of words to three numbers should be seen as a step in the right direction with a view to reducing it to two grades in the near future before going down to one name, autistic, and living as one happy family that is proud of its name.

Now you might think that I'm mad, thats OK, you wouldn't be the first. I suspect they will be coming soon with the straijacket. Thats OK too, except, well you see, when they put it on my grading goes right down the pan!
I can't even feed myself let alone express myself through typing.

Still our NT betters seem to enjoy spoon feeding me, its just when they try to tell me how I should think that I get really mad.

Its a shame that I've wasted so much of my short time here sparring with you, it's all so pointless.

I would just like to thank Mike for his natural curiosity which allowed me to expound my views a little bit and anybody else who has listened.

And Aghogday once you have apologised please give yourself a great big longwinded pat on the back for squashing out of sight yet another autistic point of view.

1. Here is your exact quote:



The DSM organization made this decision to provide severity levels, autism speaks had nothing to do with it. You suggest here that autism speaks wants to change the labels from words to numbers; there is no evidence that autism speaks ever had this intent, or were behind any of that decision, as they have no authority to change anything about the DSM5.

Autism Speaks is careful not to refer to anyone as low functioning in their marketing efforts in the public domain; they refer to a spectrum and a higher functioning end but are careful not to use the disparaging term low functioning in their marketing campaign. They discuss other people using the terms in advice to law enforcement, but they are careful not to use it to describe it as such in their marketing campaign. If you can quote them using the words low functioning, in a marketing campaign, anywhere, I challenge you to do so. I haven't been able to find an instance of them doing this.

The research they fund often uses it as a common descriptor, when describing research, but severity levels 1, 2 or 3, will give an alternative to that type of disparaging sounding language, if researchers choose to use it, but that is not within the control of either the DSM or Autism Speaks, as research groups are third party groups, that have become accustomed to using the terms high and low functioning when describing autism in research.

Autism speaks has stated that they agree with the decision to consolidate the disorder into one disorder, but clearly state in their recommendation that they are concerned that the criteria do not provide a method for properly describing the subgroups of autism that do exist. Regressive Autism is a good example, as there are no elements in the basic criteria per the loss of verbal communication.

2. You said the DSM wants to change our labels from words to numbers, which they have not done, in that Autism Spectrum Disorder, is the disorder, and the label, with severity levels 1,2,3, to describe it. However, severity levels 1,2,3 can be used as an option to the more disparaging severity descriptor commonly used now, low functioning.

The only only way to avoid these numerical descriptors per severity levels in the DSM, would have been to continue to offer more than one label for a disorder, because the symptoms among the subgroups of autism diagnosed at this point in time differ greatly from abnormal brain growth and the completely loss of ability to communicate to an ability to communicate with impairments throughout the course of one's life.

If you don't want to keep things the way things are as will continue to be the reality with the ICD10, how would you expect the DSM5 to classify the different subgroups of autism within one label, per autism spectrum disorder, without using some type of classification system per severity levels? The subgroups per the varying symptoms of autism, aren't going away, because they provide one basic criteria for a diagnosis.

I have no idea what your functioning level is in real life, and you have no idea, what mine is.

And no I'm not always good at reading between the lines, and can't tell for sure if you are being sarcastic that you can't type or sarcastic that you can feed yourself, but I think what you mean is you couldn't do it if you were in a straight jacket. If so, I don't see that as particularly amusing since there are indeed individuals diagnosed with autism that do suffer these problems. But, perhaps I am more of a literal minded person than you are.

I am a fairly literal minded person, that hasn't even been comfortable with calling people by nicknames, such as Ma, or grandpa when they are not literally my mother or grandfather. Interesting how in the general population you will see some people going with the nickname and others staying with the literal name. It's likely part of why I don't identify with the term autistic because I've been familiar with another identity my entire life, which didn't need a medical label, as far as I was concerned.

But, I'm not part of the APA or the DSM5, or my local psychiatrist's organization; they come up with the terms like alexithymia, axis I or axis II disorders.

Taking offense to their methodology in classification, is not going to do me anymore good than taking offense at school officials that have already classified Classic Autism in the schools systems in California as level 1 autism 20 years ago. That had nothing to do with the DSM and was a decade before autism speaks was founded. The DSM didn't provide a distinction of classic autism in autism disorder as opposed to high functioning autism autism disorder.

The California school system chose to qualify classic autism with a number for severity levels rather than low functioning or classic autism two decades ago.

The number system per measuring these severity levels 1,2, or 3, in the DSM5, is a more politically correct way per the disability movement rather than defining them as mild, moderate, severe, or high functioning, moderate functioning, low functioning. The same with cancer in calling it mild, moderate, or severe. There are emotional contexts attached to words that are not as strong as when numbers are used to identify severity levels.

And there is no guideline in the DSM5 that individuals previously diagnosed with Aspergers are restricted at level 1, 2 or 3 classification, per the DSM5, it is dependent on their behavioral impairments as described in those restricted definitions of severity levels when diagnosed, not a previous diagnosis.



http://www.wired.com/wired/archive/9.12/aspergers_pr.html




If one has problems in life, and goes to a psychiatrist they are going to get whatever label or classification is offered for their problems in functioning not unlike the Cancer patient that goes in for a diagnosis and receives severity levels for the degree of impairment for the abnormal cell growth in their body.

I do not identify with my diagnosis, I am basically the same person that I was 47 years before I received the diagnosis; I see no reason to call myself or identify with a diagnosis whether it is depression or autism. My wife has epilepsy, another neurological disorder, and would never refer to herself as an epileptic, if asked she will share the diagnosis of epilepsy, just as if asked I will share a diagnosis of autism, but I am a person with an autism disorder, in the same way my wife is a person with an epilepsy disorder, of which there is also a subgroup that specifically identifies her type of epilepsy.

If it was level 1, 2, or 3, in severity instead, it would be meaningless to her other than a medical classification, and that is the way I look at any psychological diagnosis, because it is the way I looked at it for 47 years before I received a diagnosis, and I see no reason for me to change my way of thinking about it, although, if another individual has a different perspective based on their life experience and want to identify with it, that's there business. I found it strange when I first came here as I was used to politically correct person first disability language, but see it as another subcultural expression of humanity, that one gets accustomed to, throughout the course of life.

The problem that I tried to identify is that the APA owns their manual that describes their definitions of autism, it is under their complete control to make them what ever they want, based on the information they analyze. That's just a reality, not a judgement on my part of what is good or bad; obviously there are many people that are currently not happy with the result of many changes in the DSM5 that the organization can stick with if they decide to.

If you have a better option than the DSM5 came up with for labeling severity levels, as opposed to the previous method of describing 5 autism spectrum disorders, or as opposed to calling those severity levels associated with one description of autism spectrum disorder as something different per language such as mild, moderate, severe, or low functioning, moderate functioning, severe functioning, I would be interested in hearing it.

However if you are suggesting that they completely ignore it is a spectrum and do not attempt to describe a spectrum that indeed does have different severity levels based on symptoms, it is ignoring the reality that Autism Spectrum Disorder is indeed a spectrum that includes symptoms that vary per degree of severity.

There is no way to escape that reality, there are those that can't speak or type and there are those that can, that is part of their reality, and part of what medical professionals assess at the time of a diagnosis. The current severity levels described as 1, 2 and 3, approximate an effort as such, per the revised Autism Spectrum Disorder in the DSM5.

If I understood correctly (big if), you're not against discriminating different levels of severity in ASD, but against the number.

Therefore, although level 1, 2 and 3 would be bad, you'd rather have something like, let's say (and I'll freely use random terms here): Asperger's, Social Dossociative and Polisless; aka AS, SD and PL?

Is this what it is? A question of semantics? If this is the point, I can get it. Surely, being identified as numbers is... empty.
On that point, I might agree with you. Give names under the ASD, not numbers... (but please, better than Asperger's).

EDIT: come to think of it... different names would allow for a better understanding without the natural hierarchy of numbers (reminds me of videogame's levels). So... I guess I'm against numbers too, as of now. I mean... not adamant, but I'd rather have names under the spectrum.

In the end, if it's the general tendency to label that makes you feel caged, guess that's a problem in Modernity itself, one I can not hope to answer or discuss any further. I leave that to my betters:

Something on the lines of T. S. Elliot maybe:

And I have known the eyes already, known them all--
The eyes that fix you in a formulated phrase,
And when I am formulated, sprawling on a pin,
When I am pinned and wriggling on the wall,
Then how should I begin
To spit out all the butt-ends of my days and ways?
And how should I presume?
(Lovesong of J Alfred)


Peace out.

Aspergers is not being replaced by a number it is being subsumed under Autism Spectrum Disorder in the DSM5 per the Rationale tab, of Autism Spectrum Disorder. The Severity levels do not describe any specific prior described disorder. A person previously diagnosed with Aspergers could be determined severity level 1, 2 or 3, depending on what level of support was determined required as well as if they meet the descriptions of either of the three severity levels.

The move to one label for the disorder of Autism Spectrum Disorder with Aspergers, Childhood Disintegrative Disorder, and PDD-NOS subsumed, with the addition of severity levels, resolves the issue, of the assumption by some that every person diagnosed with Aspergers Syndrome is high functioning, and only has a mild form of autism, when in fact many have serious problems in functioning in life, and need these greater levels of support, for general subsistence needs to be met.

The problem that has been identified is that some previously diagnosed with Aspergers and potentially Autism Disorder, that did not meet all four of the social interaction impairment criteria associated in the past, potentially only meeting two as a mandatory requirement, will not meet the mandatory requirement of 3 out of 3 social communication impairments, with the new DSM5 Autism Spectrum Disorder revision.

There is even the potential that some whom were not diagnosed with non-verbal communication impairments, not a mandatory requirement, in the DSMIVTR, will not receive either a social communication disorder diagnosis or an Autism Spectrum Disorder Diagnosis where this impairment is required as a mandatory one in both of these DSM5 disorders.

This basically indicates that the DSMIV made a mistake not making non-verbal communication impairments a mandatory requirement in 1994 for Autism Disorder and Aspergers Syndrome. There is the potential for those currently sub-clinically classified as HFA, and clinically diagnosed with Aspergers, that they adapted to their environment, through trial and error, and/or treatment/behavioral interventions, no longer displaying significant difficulties in non-verbal communication impairments, per diagnosis.

And, there is also even the greater potential that some adapted to developing and maintaining peer appropriate friendships without significant impairments in this area, also a new mandatory requirement per significant impairment in the DSM5.

And additionally the potential of some meeting neither of these mandatory requirements in the DSM5, because one could have met required diagnostic criteria, with neither of these impairments per the DSMIV or the DSMIVTR, as only 2 out 4 criteria were mandatory, per the social interaction criteria requirements. The other two criteria have basically been consolidated to make one criteria in the DSM5 social communication category, so there is the potential that some diagnosed now with either Aspergers or Autism Spectrum Disorder will only meet 1 out of 3 criteria, instead of 3 out of 3 criteria.

I suspect it won’t be too hard, in the real world clinical environment for psychiatrists to give some individuals a pass on their inherent abilities vs. their perceived abilities, based on the real world research providing evidence that some do adapt at some expense to their ability to maintain homeostasis as human beings. That’s a call for the diagnosing professional and how well the patient explains their history, along with the medical history and caregiver history that is available. For those that are diagnosed in a few 20-minute behavioral assessments, there are likely some that will fall through the cracks, though, that didn’t before because of the minimal requirements associated with social interaction impairments that were required before.

Hi Mike

I like your thinking, you are not quite there yet but you are clearly capable of independent thought.

Unfortunately these days Wrong Planet is the wrong place to be discussing the autistic viewpoint of autism and especially not this thread. This is Aghogday's thread and I must respect that. I only put up a simple suggestion that autism cannot be graded and look at the avalanche of psychobabble that it produced. I don't wish to cause any further distress.

Seek and ye shall find as there are a lot of people out there who share these views - just not many in America it would seem.

I may put up a new thread to discuss the autistic point of view sometime but I do have to ration my time here as I find it a very uncomfortable environment.

For now I will just maintain that autism cannot be graded and statements like
Aspergers is a mild form of autism
Autism is a severe form of aspergers
or even
There's a little bit of autism in all of us
Are all patronising nonsense. If you are autistic you are autistic, get over it.

All the best

Well Aghogday you certainly gave yourself a big pat on the back with an encore too... bravo!

I will ignore your post on the 4th July as it is all meaningless repetition of the need for measuring severity levels without any explanation of what is meant by that.

However in your encore on the 5th July it is quite clear that you had given the matter some thought and consequently I am able to agree with a lot of the points you made.

You are still hooked on the idea that there is a need for severity levels but you now seem to be equating them with levels of need, and you stated that several times. Interesting.

Of course people of all neurotypes have been assessed or graded according to their needs by the appropriate caregiving authorities for some time. I have no problem with that. In my country there are 4 grades numbered 1-4. Those numbers also have names, mild, moderate, severe and critical. That all seems very sensible to me.

But now in your response to me on the 5th you have stated that the new DSM severity levels of autism will be based on the needs of the individual. I can well understand why the psychologists would want to muscle in on this action as we all know that peoples needs change as they go through life. It will create a lot more work for the psychologists as autistics will have to get a new dx each time their needs change.

Will this rather bizarre method of grading autism actually be a good thing?

Will the caregiving authorities take any notice of the psychologists assessments of need?

And at the end of the day they are still not measuring or grading the autism, just grading the needs.

So thank you Aghogday for actually giving this some thought rather than just repeating the mantra. I do appreciate it.

on page 1 of this thread i suggested a 4 step system

Yes but those grades are for need and apply to any disability for any neurotype. They are nothing to do with grades of autism. Autistic people are assessed using these grades in order to assertain whether they qualify for support.

I'm glad I was able to communicate it better. Please don't forget I am diagnosed as well. Communication has never been a strong point for me. Particularly when it comes to making a concise point. I've always been better at understanding things than communicating them.

The DSM5 rationale behind this change, clearly indicated on the website, has been to provide better diagnostic procedures per the expressed goal of providing support tailored to each individual.

In my opinion they are on the right track per that general goal, but there have been some reasonable objections expressed by some that I attempted to detail specific to the new criteria.

While I understand you may be more cognizant of this information than some, not all are, and I attempt to provide evidenced information for others as well in the discussion, that aren't necessarily directed at you as an individual, when I respond to your posts.

Sorry if you found that communication style less than appropriate, but it is my unique communication style, in how I adapted as a non-verbal individual with an autism spectrum disorder..