Not autistic under DSM 5!

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I am a little surprised as a neuroscientist that you have overlooked the obvious genetic link between Autism and Aspergers that see them as two sides of one continuum genetically determined by but clearly where one manifests in more genes being switched on or off.

One of the ironies of autism research that is currently searching for bio-markers for future genetic testing (fast forward to an era where mothers can abort their autistic embryo) is that the same markers might well manifest in children who classified today as child prodigies or geniuses. If and when that happens it will create quite an ethical dilemma.

I don't deny strong evidence for a genetic link, but I do not think that ASDs are as genetic as other neuropsych disorders. I believe bipolar disorder and schiozphrenia have higher heritability. I am living proof that ASDs don't have to run in families. Nobody else in my family has an ASD or even ASD traits. I have several Aspie friends who also lack the genetic background. Plus, I still don't think that the research is looking at the subject in the right way in any biochemical field. The genetic studies also lump together different subgroups of "high-functioning autism" to, once again, meet sample size. Why not look for differences between HFA and AS genes more? Or those with a strong family history of ASDs vs. those (like myself) who don't have a strong genetic link? I am not overlooking anything. Rather, I am advocating for the research to study the things that ARE being overlooked. There are so many areas that are novel to study, and while I can hopefully get my Ph.D in the future and get to test some of these novel ideas myself, I would like to see the research get jumpstarted.

It seems that in the last ten years or so, neuropsych research takes a significant finding that has been replicated and just keeps looking at that without broadening their efforts. Like how everyone keeps focusing on serotonin in depression and OCD because of SSRIs. Clearly, serotonin plays a big role, but it is far from the only answer. Same goes with ASDs. As I mentioned, several recent studies have found differences in AS and HFA brains and agree with my perspective that these differences should be further examined, but hardly any of the research goes ahead and does so. Rather, they seem to be putting blinders on to the fact that AS may not be the same thing as HFA, as a way to make it easier to have power and large sample sizes. This is common in other studies, too, unfortunately. It just saddens me how research has become so money-hungry and all about tenure, publishing, and funding. To quote A Beautiful Mind, I feel it "stifles the potential for authentic creativity."

And yes, I totally agree about how eliminating ASD genes from the population will likely eliminate genes for savant/splinter skills. We need a way to diagnose neuropsych disorders and find which medication will prove most effective for an individual by genes/neuroimaging, but curing ANY neuropsych disorder is a big mistake. They need to just find better treatments to manage problematic symptoms so all can reach their true potential. So many studies link bipolar disorder with creative genius, for instance, so if you cure mania instead of manage it, think how many future authors, poets, actors, and artists will lose their brilliance?

I just wish there were a way for the bunch of us to talk to the professionals about this. We've got the other half of the picture--and for that matter, some of us have a professional level of knowledge on the subject too, or even are professionals already. We have a diversity of opinions here, just like the professionals have a diversity of opinions amongst themselves; but it would just be a pity if they made their decisions about diagnosis without listening to the autistics who are going to be recategorized like this. Sure, as non-professionals we couldn't talk about the fine points of diagnosis; but we could talk about the practical impact and such.

If anybody knows how we might be able to do that, I'd be much obliged to get some information. I could at the very least organize a set of statements that would represent people's viewpoints on the matter, if someone could figure out how to get them to people who have some kind of influence. WP as a whole is pretty influential in the autism community and is known to many professionals. If we could act in some kind of advisory capacity, that would be very helpful for everybody involved, I think.

Callista, I think this is a wonderful idea. As I am at the bottom of the totem pole in research, working my way up to get research experience for grad school, I have no clout, and yes, it's very frustrating to not have a say. One surefire way to get opinions out, whether individually or as WP as a whole, is submitting feedback to the DSM-V's website. I recently visited the website, and they said that they are going to open it up for a final feedback submission opportunity sometime in spring 2012. I am definitely going to send feedback. I am more than willing to do it in collaboration with WP, if you can organize something; otherwise, I will just send it individually. But I totally agree that our personal experience with ASDs and our special interest encyclopedic knowledge should not go unnoticed.

Kay Redfield Jamison (best known for authoring An Unquiet Mind) is my neuropsychiatry hero. She not only helped spark my special interest in bipolar disorder, but she also helped inspire me to pursue a research career in neuro and be a researcher WITH a disorder, like she is. I'm currently reading her and Goodwin's renowned textbook on bipolar disorder, after wanting to read it for years (I'm reading the 2007 second edition), and she and Goodwin continually point out the flaws with the DSM-IV bipolar criteria and how it should be revised for DSM-V. I already was angered by the DSM-V's proposals before this, but I'm angrier now that I see how few of the Jamison & Goodwin critiques have been addressed. The book is beyond amazing, and I think that reading it lately has sparked even more passion in me about the DSM-V. I would love to organize a WP opinion piece if possible.

ASAN and the Autism Society of America is working together on this, as well as Autism Speaks. Since ASAN is a self-advocacy organization, that might be a good source, in attempting to provide an opinion to someone influential in the DSMV organization.

One can also comment directly to the DSMV organization as well; the organization is scheduled to open comments again in the spring of 2012, so that opportunity should be made available very soon. If you would like to comment directly to the DSMV organization, here is the link to register to do so.

This will be third and last commenting period. During the last commenting period in the spring of 2011, the organization reviewed over 2000 comments. It is likely that some autistic individuals that have visited the DSMV site in the last couple of years have provided feedback during the open periods for comments. And, it is possible that some of those comments were used, in the decision to make changes, in the last couple of revisions.

http://www.dsm5.org/pages/registration.aspx

That's a good idea; I'll e-mail some of the people I know in ASAN. Maybe they'll have some tips.

Thank you for providing the link to register. I wasn't aware of needing to register. Just submitted my registration application. Used my user name from here in case fellow WP-ers need to recognize me. And, as always, I'm always up for helping submit whatever feedback is necessary for future endeavors.

While I agree with you that more "statistical" power can be derived from larger sample sizes, the studies by Eisenmeijer and Attwood and others that looked at the determinant of language delay (the single primary differential between AS and HFA) had reasonable power from their statistical samples (> 40 participants).

With the sole exception of the Yale University nuerobiology group most international research on autism has unanimously come in favor of the following two premises
**Characteristic manifestations of autism decrease in severity with increasing age**
**the differences displayed between Aspergers and Autism diminish significantly where IQ >80

The second point is the critical factor, autistic individuals with language delay catch up when they have a normal to above average IQ.

So distilling the premise behind your burning desire to define the autistic brain as "different" to the Asperger brain you are hedging your bets solely on the manifestation of language/speech delay. Language delay is also common in non-autistic individuals and certainly does not necessitate cognitive impairment.

So all we are left with is nueral differences? yes perhaps there are, but honestly what will a profile tell us? that during childhood the nueral networks that connected speech with other areas of the brain was impaired. Does this lead to lifelong cognitive impairement? apparently not for 30% of autistic children the prognosis is no different than for those children diagnosed with Aspergers where they have a normal to above average IQ.

If you are planning a PhD to differentiate the HFA brain from the AS brain I'd at least come up with a better premise for conducting this study, Stick with Bipolar research.

From a treatment standpoint, no, the potential neural differences don't matter. But I'd like to know WHAT is different about AS brains that make there not be a speech delay, just to learn more about the brain itself. I also think that there should be more done with why AS individuals have sometimes been found to have higher VIQ than PIQ and more clumsiness, again from the standpoint of understanding how the brain works in general. But bipolar research IS my passion, and there are a lot more unexplored areas there. If I ever would do AS/HFA research, I'm more interested in special interests and sensory issues, because they have largely been ignored.

No worries, good luck with your research.

Thanks! I don't care if I don't get my doctorate until I'm 40, so long as I can accomplish it someday. I'll just keep trying- I have to find a way around the often unfortunately social and calculating process of grad school acceptance. Just need to find the right school, one that cares more about students' passion rather than competition and how the students can make them money.

Acceptance into Grad school is largely based around grade point averages.

Not from my experience of rejection!

I certainly will not argue that you shouldn't do your research. I am sure your research would be excellent even without comparing it to the extremely shoddy examples so far.



I actually believe that, from some things I've read. Lots of kids being diagnosed with bipolar, even. I'm dubious about a lot of the complaints about overdiagnosis, but there are a few I think are legitimately overdone. Bipolar is, I think, one of them.

Thank you, Verdandi. I appreciate it. I debate about AS vs. HFA so much just because I get very angry about the research that is NOT being done before conclusions are drawn from highly mixed results. Some days, my behavior or AS in general seems very autism-like. Other days, I feel like NVLD is a better way to describe my AS. I just would like NVLD in general to be examined more.


Childhood bipolar diagnosis is just shameful. Granted, some diagnoses ARE legit, mostly in kids who have a strong family history of bipolar disorder. But a lot of the "bipolar" children nowadays are being given that label over explosive anger. While explosive rage is very much a common part of mania, there is SO much more to mania than that! I KNOW that, if I were a kid growing up today, I would have been falsely diagnosed with bipolar disorder. My psychiatrist actually suspected cyclothymia when I first started seeing him in college, but I had already become an expert on bipolar, so I correctly dismissed the claim. If I were bipolar, how could I have tried various SSRIs for OCD/anxiety all throughout my late teens and never become manic?! I did try Lamictal for my moodiness, and it didn't really do much. But I tried it because my moods ARE intense and disruptive, but they still aren't indicative of bipolar moods. It wasn't until I learned about AS that I figured out that my moodiness and sudden outbursts of anger are always, always, always connected to being interrupted during a special interest, being exposed to a sensory issue, and/or having to suddenly change my routine. When the triggers aren't there, I'm fine. Bipolar moods are present no matter WHAT happens. A manic patient will still be euphoric if they hear their grandmother died. Similarly, a depressed patient will still be depressed if they win the lottery. There is no mood connection to environmental triggers.

The problem is that anger and rage in children are being pegged as early-onset bipolar disorder when there aren't ANY other manic symptoms present. While it is true that real early-onset bipolar disorder often is given a "bipolar-NOS" label due to kids having more rapid cycling and not fitting the time requirements in the DSM-IV, it is NOT true that these children with atypical manifestations are only showing anger as a symptom. Yes, you don't usually see classic "euphoric" mania in children, as mixed states usually are the norm, but so few of these "bipolar" kids have any symptom other than irritability and moodiness. They don't sleep less, have pressured speech, have hypersexuality, have increased productivity/goal-setting, etc. Anger is a very non-specific symptom. It can be present in a slew of neuropsych disorders, and it really angers me that these children are being given the label of a very serious and severe condition because doctors don't want to take the time to tease out what's really going on.

I do think that, in the case of childhood bipolar disorder, overdiagnosis is being fueled by drug companies, and that really angers me. It helps keep people anti-medication, just because doctors are giving it out when not needed. And that hurts those of us who DO need psychiatric medication. But the reason I'm thinking this is a drug company thing is WHAT medications kids are being prescribed. The "gold standard" for mania still is and always will be lithium. How many kids do you see being given lithium first nowadays? Yes, some people don't respond to lithium, but the next step should be the anti-epileptic mood stabilizers (Depakote, Tegretol, Lamictal, etc.). The atypical anti-psychotics may work for a small subset as management and are needed during acute psychotic mania hospitalizations, but they are NOT mood stabilizers! And the atypicals are being handed out like candy nowadays. They are serious medications, and they should only be used for severe, treatment-resistant bipolar disorder, schizophrenia, schizoaffective disorder, and cases of depression or OCD that are highly treatment-resistant.

And as far as the bipolar spectrum getting out of control, there are some out there who propose making "bipolar II-1/2" and "bipolar 1/2" and all of these other ridiculous subsets that aren't even seen in the clinical population. Mood disorders as a BASIC spectrum works beautifully. But the "basic" spectrum is lengthy, already: bipolar-I (euphoric mania, irritable mania, or mixed episodes, with or without psychotic features that are mood congruent or mood incongruent), bipolar-II (hypomania only), cyclothymia (hypomania and dysphoria only), unipolar depression (with or without psychotic features that are mood congruent or incongruent), schizoaffective disorder (bipolar type, depressed type, or schizophrenic type), and atypical/NOS bipolar. And that's not even including early-onset, rapid cycling, people who have only been depressed but have the genes to become manic in the future or on antidepressants, and children who look like they have ADHD but are really bipolar and become manic on stimulants. Do we really need to make a spectrum category for all of these MANY stipulations and variations? The bipolar part of the spectrum should be kept simple for diagnostic purposes, with just bipolar-I (manic or mixed), bipolar-II, and cyclothymia. (We should examine the different subsets of symptom types in research but not clutter the diagnostic criteria with every possible manifestation.) Even the NOS category is ridiculous. If a kid is clearly manic for THREE days, not FOUR, he shouldn't be counted as being bipolar-I? And if a kid is moody but has no other bipolar symptoms, he should be called "atypical bipolar"?

Anyway, that's my rant for the day.

Attention that you can be HFA without speech delay.

Perhaps an interesting study could be to compare

a) people with AS
b) people with HFA and with speech delay
c) people wirh HFA but without speech delay

And see if the neurology of the group c) is more similar to a) or to b)