No more Aspergers in the DSM V

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I'm with Temple Grandin: get rid of umbrella diagnosis PDD-NOS, keep Asperger's. I think she's spot-on about Asperger's being a community and being viewed as a positive diagnosis, too. I also agree with what what Tony Atwood said in that article about people not going to get diagnosed if there's just a diagnosis of "autism." For example, I don't consider myself autistic, because I don't feel that my deficits warrant such a severe label. People who currently have a diagnosis of autistic disorder, whether it be LFA or HFA, suffer a lot worse than I do, and I don't think it's fair for me to be called autistic when I don't suffer as much.

But my biggest beef with the planned removal of Asperger's from the DSM-V is that we do NOT know for sure whether or not Asperger's is a form of autism. Yes, there don't seem to be any differences in adulthood between HFA and AS, but what about neurologically? The fact that HFA individuals have a speech delay and Aspies don't says that there is something different about HFA brains than Aspie brains. Maybe the difference is small, but we need to find out for neuroscience's sake. And if the label of Asperger's gets trashed, these differences may never be found. As a neuroscientist and an individual with Asperger's, I find this decision very, very poor.
-OddDuckNash99-

I feel exactly the same way.

And I too noticed Atwood's and Grandin's quotes as the ones I agreed with in the article.

Yeah, but if you don't lump them, then there'll be other characteristics where people would be "lumped with" those who had dissimilar traits. For example, you'd be "lumping" people with good sensory processing with people whose sensory processing absolutely sucked; or you'd be "lumping" people who had a strong desire to interact with people who ignored others most of the time. While speech may be the most obvious difference between autistics, it isn't the only one, nor in many cases the most important one. Most autistics who start out non-verbal will learn to speak. And many who start speaking early will have serious communication problems despite their ability to form words. It's just not so easy as dividing down the line of "Well, these people can speak; these people can't."

For another example of a disorder that can look very different while still being fundamentally the same thing, look at cerebral palsy. When I look at the CP students at my school, I see everything from those who walk slowly and somewhat clumsily, to those who use a wheelchair, PAs, and a communication device. They look very different; and yet they have the same disorder. And there are more ways you can divide up CP cases than just whether or not they can walk; you could divide it along the lines of spastic/ataxic/athetoid, or you could divide it along whether or not they also have mental retardation, or you could divide it according to whether they had controllable movement, or whether they had enough controllable movement not to need outside help for ADLs. There are so many ways... yet, it's all CP. Similarly, autism is autism despite the very broad range of expressed autistic traits.

Exactly. That is precisely my take on it as well. The general consensus of opinion in the Autism research community is that, generally, there is no way of drawing a line in the sand between the various labels and so it makes sense to see them all as a wide range of symptoms on the same continuum.

The more an area of research is sub divided, the more researchers will tend to specialise in one area only and that risks vital information and experiences not being shared that could benefit everyone on the Spectrum.

Screw the DSM. Let's call it something else, ignore the shrinks, ignore people's professional diagnoses, not discuss a cure, not refer to coping, "diagnose" people informally by popular agreement, use secret passwords to protect our sites (which will be partly invitation-only) and no longer have to worry about what we're called or what the curebies say about us! We could also continue to work for "autistics" when necessary (like when their parents would like to send them to the JRC), but this would really make life easier. Who's with me?

No offense, but, I for one would not like to think about where I would be without the DSM, shrinks and professional people who directly or in-directly helped me discover, come to terms with and learn how to make the most of my unique wiring plan. I spent 30 years in the no man's land of anxiety, loneliness and depression before my diagnosis and I'm extremely grateful for all the people involved in Autism science and research for allowing me to understand myself.

Somewhere between "This is terrible!" and "It's a good thing."

I'm not in an exclusive Asperger's club here. This is a community for everyone with autism. So, where is this specific Asperger's community located?

If we were all to go to the same diagnostician who diagnosed in the same way each time a lot of us would be given different labels than we have now. If I were to see a different diagnostician it is very possible I'd get another label under the umbrella of autism than I have now. How is this productive when the criteria is so unclear it can not even be followed correctly as it stands?

As for neurologically different, I don't see why it matters. I have a sibling who was very delayed in speech yet I relate to her just fine otherwise and since we're both related it points to the same genetic link. In fact, my sibling seems a lot more happier than I currently am. "Severity" doesn't seem all that correlated with diagnostic label at this point nor does it point to happiness.

There is simply no real way to define severity, and no point in separating between speech delay vs. no speech delay, thus the merge. If some people really find the marking of delayed speech necessary why not just have a subtype for those with a speech delay?

Except that autism is a spectrum to such an extent that it shades into very small quirks and differences that are not even recognized as true AS. With CP you either have it or you don't, as I understand it, even if it can be more or less severe and express differently in different people. With autism, you can be a little autistic, even fall outside the diagnostic criteria, yet even some small aspect of autism can wreak havoc with a person's life.

I am at a point where I no longer know what to do. It's so difficult for me to function that I feel at a loss. Yet I am only mildly autistic.


How have shrinks and the knowledge of having autism helped you? I would like to know what I can do to get some help. I have gotten no help. Therapists only make me feel worse. And knowing I have autism makes me feel even more hopeless because now I know why I can't do the things I tried to do in the past, and I feel that trying them again will only lead me to smack up against more brick walls.

It matters for the overall understanding of how the brain works. Neuroscience is still a very new field, and there is a lot we don't know. Any attempt to better understand the brain is needed. Seeing potential differences between AS and HFA could help us learn a lot about the way language centers in the brain works, for example. Right now, the field of autism research is full of confounds, and by lumping all of these disorders under one label, the confounds are only going to grow larger. Nobody but myself seems to consider this.
-OddDuckNash99-

I spent many years extremely unhappy and I couldn't figure out why. I knew that something was different about me, I knew that I had trouble with certain things, environments and situations. But that was it. I would struggle to keep myself together for a while - sometimes for several months - and then I would burn out and have a melt down. This usually signalled the end of whatever job I had and if not the end, then certainly an extremely rough time ahead in my relationships.

This cycle repeated for around 10 years. I obviously had issues before this, but I wasn't consciously monitoring it as much. I had a fairly miserable time at school for example, but I didn't notice a pattern back then, I just felt unhappy, stressed and weird.

After my first burn out, I began talking to a psychologist and she established another pattern for me; telling me I was depressed and filling me up with SSRIs. This seemed to make the people around me more happy than I and my cycle of struggle, burn out, CBT and pills continued until I moved to New Zealand about 2 years ago.

I went through an extremely severe burn out and spilt up with my partner of 8 years. Luckily I was sent to speak to a great local psychologist who picked up from my tales of woe some hints and she sent me on to see an equally amazing specialist who thoroughly accessed me and diagnosed me with PDD-NOS and ADHD.

I have been put on stimulant medication for the ADHD and the positive effect of that was pretty much instantaneous. But the upshot of that was that once I had a grip on the ADHD side of things, I began to notice the areas that signalled PDD-NOS.

I have spent the last year and a bit, working with both specialists trying to understand how the ASD (I prefer that to PDD-NOS personally) is effecting me, how I feel about that effect and what - if anything - I would like to do about it. I've spent - and still do - hours in back and forth email conversations, therapy and reading book to do this.

I realise that there will be lots of folks who have worse symptoms than I and they may feel that the symptoms completely ruin any chance they have of achieving whatever it is that matters to them. But based on my experiences, I found that something as simple as seeing past experiences in a new light has made a huge difference for me. It wasn't easy and I still have much work to do - I probably always will. But being able to start to forgive myself and accept that it's just the way I am, has worked well for me.

One example of how this has benefited me is that I have now enrolled to purse a biological degree. My parents always assumed I would work in biological research. I didn't go to university however, due mainly to the decline in my school work, which I now believe was caused by a mixture of my own self defence mechanisms, my problems with executive functions and the stress of dealing with social life in high school.

I have always dreamed of working in science and that is all I read about in my spare time. Now that I understand what happened at school, I feel, for the first time, more confident in my own ability and passion to achieve this. Additionally, now that I am armed with a better understanding of who I am and what my weaknesses and strengths are, I've also contacted the disability services staff at my university and relaxed myself even more by seeing what they can help me with. It will still be tough for me, obviously, but compared to not being able to even entertain the idea, this is real progress.

I apologise for the life story, I know you didn't really ask for it, but I thought I should put everything in context. The main point is that if it wasn't for the specialists who kicked started me on this journey of self discovery and who are helping guide me along the way, I would still be in the same confused, stressed and unhappy place that I was 2 years ago. And for that, I am eternally grateful.

Here is my take on the proposal: (1) Having a name is good; (2)
Recognizing autism in that name is good; (3) Having a more specific
qualifying name is good. (4) Having that qualifying name be the name
of its discoverer, Hans Asperger, is very good; (5) Having that name be
called a “disorder” is not good; 6) Having a diagnosis that, as proposed,
appears to be written to assess only children, not adults, is not good; i.e.,
if an undiagnosed adult on the autistic spectrum does develop a peer
relationship (see 1-c) and marries, can he, in his future, not be diagnosed
an AS person? If he is diagnosed prior to marriage, then weds, is he then
officially undiagnosed? (7) In conclusion, the revised nomenclature
should be “Autism Spectrum/Asperger’s.” As we uncover subtypes,
additional slashes could be added. That’s the best.
Preiew from Wait, What Do You Mean? Asperger's Tell and Show

Similiarly, splitting hairs and dividing things along arbitrary lines doesn't necessarily facilitate understanding either.

Making it a spectrum instead of defining a new "disorder" for every variation and quirk is a starting point. Hell, even with the so-called "objectivity" of brain imaginig technology, the doctors are still only guessing at the significance of what actually happens when a certain section of a person's brain "lights up."

As a female diagnosed AS, but who can put check marks next to things that are "only AS" and next to things that are "only NVLD" I get seriously tired of living in a diagnostic limbo.

Dappadee, thank you for your very thoughtful and thorough response. It makes me wonder if I should try medication for ADHD. I have never thought that I had it, but it seems to be an integral part of AS for so many.

I too better understand how I got myself into trouble in the past, I'm just not sure how to apply that knowledge to not making the same mistakes again.

Best of luck with your studies.

Thank you I'm going to need all the luck I can get.

If you have ADHD as well it might help. I think that some doctors worry about giving stimulants to people on the spectrum. Luckily for me my doc says that he finds people like me who are blessed with both ASD and ADHD, respond very well to small doses of stimulant.

As for applying your AS knowledge; don't get me wrong, I don't have a foolproof plan of attack this time around. I'm just more aware of the areas and things that I do that are going to cause me trouble and I'm going to try my hardest to prevent them from occurring and work with disability services at my university to support myself where I struggle. It's all about being your own best advocate, or that's how I see it anyway.

Well, obviously. the solution is not to keep the word "Aspergers" but to change people's general perspective on the word "autism". Then no autistic ("aspergers" or otherwise) would face that stigma. Also, I appreciate that you do not want to label yourself as you don't feel like you have the same challenges. However, so what? Not all diabetics have the same problems; not all bipolars have the same problems; not all epileptics have the same problems but they are given those labels because their symptoms best fit that description. AS and HFA don't seem to have any differences so aspergers must be part of that spectrum.