DSM controversy makes it to mainstream media

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When I was diagnosed with AS, I was told I could undergo more testing to see if I might be at the HFA part of the spectrum. But, I was told that there wasn't too much point to that since AS and HFA were considered more or less the same thing. I believe the clinic realized the upcoming changes, and that AS was listed under the ASD anyway. So my diagnosis is listed as AS. My son was diagnosed with AS last year. His school IEP has him listed as receiving the IEP under the category of autism.

I believe that we have been fine tuning this AS to ASD thing in gentle steps over the course of a few years. When I was diagnosed I learned that AS was part of the spectrum. So I am thinking, if it's already part of the spectrum, what is the big deal? Is the fact that we are no longer looking at individual differences/disorders under the spectrum and moving to one thing only---divided up by severity? Basically, that seems to be what we are doing anyway. Rather than saying AS or PDD-NOS or HFA or LFA or Retts or Childhood Disentigrative Disorder or whatever else is listed we are just going to say mild, moderate, or severe. What has really changed? We are still autistic by definition.

I think I know.

Are we with AS a bit guilty of "Aspie elitism?" Are we afraid of losing a merit badge? Gee, I don't mean to sound harsh here---I truly apologize for that. I apologize if I have ever come across as sounding elite with my positive posts and claim of AS as a difference. If you must know the truth, I do view AS as giving us gifts, but at the same time---I have problems. I am not elite. I do not consider myself above what is often called the lower ends of the spectrum.

So, I am not afraid to lose my "Aspie badge" because I have referred to myself quite often as autistic anyway. I know what autism feels like. I know this inwardness. I know about being locked into interests to the point of exclusion of those around me. I know about shutting down. I feel the awkwardness of socializing. I often have to force myself to say "Hi" to fellow workers in the hallway. I know about sensory issues. I know about the rigid routines I follow. I dislike change. Etc., etc., etc.

Yes, AS/autism is a disorder. It is a disorder because we are measured against NTs. But our disorder is a difference too. You see, we have a different brain type than the NT. So by definition we are different. But as Pensieve says, it is also a disorder or we wouldn't have been diagnosed in the first place. With my official diagnosis came therapy sessions. I attended those and worked on issues in my life. Did it help? Well...maybe a little bit...but autism is something that has been with us since we were born...and it's hard to modify that. I can do eye contact somewhat better. I did learn some acting techniques to socialize a tad bit better. But I still have difficulty with many things. So I am, and always will be, autistic.

My son is diagnosed and I am not. I have not officially sought diagnosis. But I do know myself and i know my son. I know that we are very much alike. I know that he actually functions better socially than I did at his age but his sensory issues are significant impairments and mine are not.

No.

See, we understand Autism. But most people do not. Most people see "autism" as a synonym for "ret*d" Personally, I doubt most of us would mind if it were simply a name change. But now, when we go to a job interview, we will have to say "I have autism." To an uninformed person, that could reflect much worse on us than being able to say "I have Asperger's." It's more than a name change, we're being lumped into a negative public stereotype.

It's not being hypocritical to want to avoid that title, because we are some of the few who understand it.

There is a lot more to "functioning normally" than having a few friends and a job. People with schizophrenia often have jobs and at least a few friends, but that does not mean they are functioning normally. People with Downs Syndrome usually have friends and often have a job, would you construe their function as normal?

Consider that hearing impaired people often have friends and a job, but they are not "functioning normally"; by definition their hearing function is impaired.

You cannot determine from a couple of isolated biographic facts whether or not someone is "functioning normally".

For a concrete example: consider that a pervasive piece of advice given to people who are job hunting is to rely on their social network to inform them of jobs and to inform others that they are looking for a job. In fact in my country around half of all jobs are never advertised but are filled by 'word or mouth". Such advice is useless to me; I have some friends, but no social network, and I would not have any idea how to raise the subject and ask for anyone's assistance anyway.

Take the item of maintaining relationships. I cannot do this. Others maintain a relationship with me; it's all very one-sided (and most people give up after not too many failures on my part to reciprocate). I presume others contact each other when there is no particular purpose to doing so (people complain for instance that I do not randomly contact them; I have no idea why and when one contacts someone else when they have no purpose in doing so.....do they keep a calandar and have minimum time frames between pointless contact....?)

I am not "without friends" but I am very much impaired in both social reciprocity (although I use a lot of scripting to hide this in superficial and predictable engagements, its is very apparent in unstuctured engagements, particularly when they take place in a busy and overwhelming environment, and the effort I have to put in, is itself an evidence of impairment) and maintaining relationships appropriate to my age. I have some relationships but not the normal range and quantity others have, and those I do have are result of the efforts and patience of the other party rather than a reflection of my own competencies. That I have relationships at all is the result of being lucky enough to fall in with exceptional people who make all the effort and do not misunderstand my passivity in the relationship as indicating a lack of interest or a desire to not be in the relationship.

No you do not. If your condition is even relevant, nothing prevents you from saying the same thing you would say now.

That is helpful. By that description I am definitely not functioning normally. At the same time I'm not a complete mess. My impairments may not seem as obvious because I'm no longer trying to be something I'm not and will never be.

This is one of those debates where I can see different sides as right. This new DSM could cause terrible turmoil if we let it. What are we going to do? I think I know what is going to happen.

Gee, I am making some odd posts tonight for me---the positive AS guy. Oh well...I am human .

I think the new DSM-V will eliminate AS as the proposal says it will. We will now be labelled as autistic---officially that is. But you know what will happen? We are going to keep using the Asperger's name anyway. Thay can't take that away from us. If we want to use Asperger's, we can. Now, as some of you are concerned about---will the autism label cause a stigma with people like employers, etc.? I don't know---I am sure it could. But, I have trouble relating to this because I view autism in such a positive light. But yet, I know we have difficulties---but NTs have difficulties too. At least I can retreat into my special intense interests. Remember that the proposal will list us as mild, moderate, severe---at least that is how I have been led to believe. As autism awareness is being ever more brought to light to the lay audience, I believe that the stigma of autism is slowly going away. But, I could be naive too. We have all had different experiences with this.

Phew! I am relieved I was able to explain things in a way that is helpful (I was a bit dubious as to whether what I had typed would be helpful, as it is still a bit on the vague side).

It's difficult because there is no way to describe the "atypical state" unambiguously and specifically.

It's a bit like that saying about functional families all being "alike" while every dysfunctional family is unique in their dysfunction. Another way of explaining it might be to refer to maths. There is one correct answer to 2+2 in base 10, but a heck of a lot of wrong answers. You cannot really explain the characteristics or describe all the wrong answers (as technically there is an infinite number of incorrect answers), other than to say they are all answers that are not the one and only correct answer.

I found an article:
http://www.chicagotribune.com/health/sn ... 2415.story

RE: Temple,

Doesn't she only have cows for friends? I mean, she's not married and lives alone, and emotional relationships with people aren't her thing. So, she lacks appropriate peer relations for her age, and she also lacks social reciprocity and lacks the nonverbal cues and most likely has problems with verbal skills (taking things literally and other minor things).

She meets the repetitive behavior cluster easily.

So, even Temple Grandin, the person who's quite high functioning, can still meet the criteria easily enough.

By me, a name is a name and reality is reality, and I would not get upset one way or the other. I do have problems living in a culture that was not designed by or for anyone even a bit like me, where we need a catalogue of diagnoses and protocols to make the individual even less a human being than certain pers thought.

Just because we lack social skills, doesn't mean that we should be wiped off the face of this planet. We need acceptance, not cure and prevention. How about a cure for ignorance and programmes in grade school that will prevent the general population from being ignorant, in the first place.

Senses can definitely contribute to an IQ test- I just had my IQ tested on Tuesday, and while I'm still awaiting the results, my hyper-sensitivity to all perceivable visual changes netted me a perfect score in both pattern recognition and logic (where you find what's wrong with seemingly normal pictures). Math on the other hand has little to do with the senses, and as such I didn't do much better than average in that field.

Also, "high functioning and low functioning", while opinion-based, is quite useful for explaining your case to someone ignorant to the spectrum. Many people can't comprehend that Autism doesn't mean ret*d because of the earmuff-wearing air guitar players they remember from highschool, and saying it's Asperger's, then saying Dr. House has it, is about the quickest reliable explanation possible. High functioning means just that- you have a lot of normally-functioning abilities, while low functioning might mean you have trouble managing finances, talking to people, practicing good hygiene, focusing, etc., could be any number of things.. Makes perfect sense to me, and is only as derogatory as you convince yourself to see it as. I have a low-functioning ability to clean my room and do things on-time; I'm over it already

I really don't understand the point in eliminated AS as a diagnosis- It falls under the Autistic Spectrum, so it's really nothing more than a specific kind of Autism. All they'll end up doing without the ability to say "Asperger's" is call it something else like "High-Functioning Autism" which defeats the entire purpose behind the change to begin with.

It's also on CNN: http://www.cnn.com/2010/HEALTH/02/11/as ... /?hpt=Sbin

Seems like a biased article, though.

That's really not true either. Asperger's has bad connotations to it as well. In fact, I still get patronised purely for my Aspergers label. I still have people talking down to me and treating me like I'm stupid. Also,the stigma still exists for AS in terms of getting a job and people's general opinions of you. I mean I still don't have a job. One of my friends with Classic autism has a job and I don't (though, then again, she was employed before the economic climate got bad). Not that I'm undermining her skills- I'm just noting how hard it is for most people to get a job at the moment.

It's not about people's opinion on autism- it's about people's opinion of mental disorders in general. I mean, surely the same stigma is attatched to depression and Bipolar Disorder and ADHD and Anxiety and Dyslexia...

Also, the label "Bipolar" can arouse stigma, but so far I haven't seen many people diagnosed with Cyclothymia get riled up about the label "Bipolar" (but if there are, I apologise). What makes "Autism" different? A rose by any other name would smell as sweet.

Sorry, but not wanting the label of "autistic" (which people use already) to avoid stigma is kind of cowardly in my opinion.

If we're going to change people's opinions on autism, we shouldn't be afraid of these labels. If anything, there will be less stigma attatched to being autistic because people will recognise that the spectrum is wide and continuous.

I seem to be in the minority here, but I'm posting this anyway, because it is what I believe.

It is a ridiculous proposal.

Asperger's Syndrome is a *form* of autism, a subcategory that is given its own name because it has important distinctions from other forms of autism.

I would not be comfortable with AS no longer being distinguished from low functioning autism, not because it is better in any way, but because it is simply different from other autistic spectrum disorders. It's a subcategory and should remain such. I say this not out of "elitism" but because of the fundamental problem of communication here: if people hear you have autism, they'll get a very different idea of who you are than if they hear you have Asperger's Syndrome. Neither is necessarily a pleasant idea, but one is more accurate than the other, and I, for one, do not wish to be judged by lower functioning autistics. Nor would I want lower functioning autistics to be judged by my symptoms, and my behavior.

It is not all that difficult to explain to those not in the know that I have Asperger's Syndrome, because not as many people are familiar with the term. So even if I say it's a form of autism, the fact that it's given a different name makes people more open minded about what it might be. But if I were to always say, "I have autism," then they would immediately think something different, and their mind would be closed to the possibility of me being different from the low functioning autistics they have heard about. Indeed, they would likely tell me that I was either lying or mistaken, that I was clearly not autistic because I seemed too intelligent and articulate for that. As for those who are familiar with the term "Asperger's Syndrome," they, too, may have a stereotypical "aspie" image in their head; but this stereotype will, in all likelihood, be much closer to who I am than their stereotypical "autistic" image. I feel this way, again, not out of elitism, but because it matters to me that people know the truth about who I am--and because of the simple fact that the symptoms of those with AS are not as severe and are thus not quite the same as those with Low Functioning Autism.

Because these symptoms are different, the notion of this decision "leading to better educational services for affected kids" is ridiculous. The diagnoses are different because the educational needs are different. Different forms of autism require very different educational needs, and if you make the training too difficult for a low functioning autistic, they will not learn. But if you dumb down the training an aspie needs by putting it at the level of what someone with low functioning autism needs, then they will not able to properly grow as an individual--they will not be properly prepared for how to function in society, because low functioning autistics are not expected to ever join society. This is because low functioning autistics are, by and large, not capable of it; whereas aspies are capable of it and are expected to do it.

It is true, as the article says, that Aspies have difficulty accepting change; however, we are also very logic-driven creatures, and putting AS with ASD without any further distinction does not, in my view, seem at all logical from an educational standpoint or from a communicative standpoint, because it would simplify education that needs to be complicated, and because the single word would come to mean so many different intellectual levels that it would probably confuse people even more than the current situation would. It is also true that doctors disagree about when a disorder begins to fit into the Asperger's category, and when it is still "autism." Part of this is because AS and High Functioning Autism are virtually the same; and part of it is because, being a spectrum disorder, there is no clear delineating line. But since when have mental disorders been simple things? ADD and ADHD are given separate labels, even though the core symptoms are the same, because one is distinctly more hyperactive than the other and, as a result, children with it require markedly different educational needs. AS and ASD are given separate labels for a similar reason. It is up to the doctor to decide which fits a particular person; and I firmly believe that they are more likely to get it right if the distinctions between the two become clearer, not more vague.