DSM change justified due to pandemic of AS misdiagnosis

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All this made me think that there is a very important difference between official diagnosis and self diagnosis (or maybe unofficial assessment by a private practitioner).
Official diagnosis is for the social services; they want to identify the people who need their support, and to exclude those who can cope independently. For them, Mr. Asperger is ok as long as he has a job and/or family members to support him.
Unofficial/ self diagnosis is for self understanding. If Mr. Asperger dosn't need support from social services but WANTS TO KNOW why he can't look people in the eyes, why he's always missing something in communication, etc (imagine a long list of autistic traits here), then all he needs is some knowledge about the spectrum. It might seem not so important from the point of view of a severely impaired person; and yet, it IS important to Mr. Asperger who had spent years hating himself thinking he was "stupid", "selfish", "aloof", "lazy", "shy", "obsessive" etc. while all he had was actually a neurological problem.

The concept of ASD being "in remission" due to circumstances is very strange to me. I guess that's because it's so hard for me to separate "autism" the diagnosis from "autism" the thing ( I can do it for very short periods of time by just thinking about the diagnosis alone, but it overloads my brain)...so instead of thinking about autism as behaviors and symptoms, I tend to think about austim as being whatever causes those behaviors and symptoms.

When the problems of autism are fundamentally caused by neurodevelopmental delays and by generally-stable differences in brain-structure and brain-functioning (I'm ignoring genetics to keep the scope of this relevent), it doesn't make sense to me that those fundamental autistic differences could be eliminated and then reappear in the same ways that pathogens or other conditions or diseases might....many/most of those fundamental autistic brain differences can't even be temporarily altered with medication. An impermanent change or fluctuation in autistic symptoms/behaviors probably doesn't signify any change in the fundamental structure nor the atypical functioning of the autistic brain -- at least not when that change is tied to context/circumstance/environment. Even permanent changes in symptoms/behavior might not signify any change in the atypical nature of autistic brain functioning.

You can say epilepsy (for example) is in remission if medication is successfully used to completely suppress/prevent seizures for 5 years, because the seizures are the direct result of atypical electrical activity in the brain -- no seizures = no seizure activity in the brain...brain functioning has been normalized, at least in terms of seizure activity. But with autism the relationship between symptoms and brain functioning is not so direct nor clear cut because the symptoms are behavioral, and an autistic person who shows no symptoms for a period of time may have no change in brain functioning at all. If an autistic person with massive sensory dysfunction is able to control their environment and activities so that offensive sensory stimuli and demands to meaningfully process sensory information using problematic sensory channels (e.g. if someone has something like visual agnosia then their visual channel is problematic) are eliminated or kept to an absolute minimum, they will function much better than they would otherwise -- they might even be able to function and behave "normally" or near normally in terms of their ability to process and respond to the limited sensory stimuli in their highly-controlled environment, but that normal behavior doesn't mean that the sensory dysfunction is in remission.... normal behavior/functioning ≠ normal sensory processing....brain functioning has not been normalized by circumstances that do not require the person to have normal brain functioning.


[Edited last half of this for clarity:]
It doesn't make sense to me that an autistic person whose ability to manage is dependent on context/circumstance should be described as "in remission" when they happen to be in circumstances that enable them to function -- because that gives the impression that the autism itself (the atypical brain structures/functioning) is gone or is being suppressed somehow, when in reality the autism is still there .... the atypical brain functioning is just as atypical as always-- it's environmental factors that do not affect/change/suppress the atypical neurology itself, that are enabling the person to function.

Last edited by animalcrackers on 18 Jun 2013, 7:46 pm, edited 1 time in total.

So, the Psychologist needs to decide whether the impaired person needs state support? Are you going to require the Psychologist to determine the financial viability of the patient? I don't think that makes sense.

That makes sense to me...I agree with it. It's not too difficult to determine if a person needs financial support but that-can the person pay rent , buy food and other necessities of life and care for themselves? That's not the only kind of support a person might need. If a person needs accommodations in order to keep a job for example or in order to do well in school then they would also require a diagnosis (assuming they met all the criteria/had the symptoms). Or maybe a person can't care for their house and their personal hygiene because of executive functioning problems they might require a support worker. Maybe they have meltdowns in crowded places and then do dangerous things so they need a support worker so they won't be a danger to themselves. Maybe they have no friends or any relationships because of a lack of basic social skills and are depressed and lonely so they need some social skills training and of course treatment for the depression or maybe someone needs a job coach because they don't have the basic social skills to get a job. There are many different forms of support, accommodation and treatment.

Self identification can also include identifying oneself as just having autistic traits. My mum found this explanation for some of her traits interesting and helpful when she read about autism because I was diagnosed. Now she understands why she's SO sensitive to the feel of seams in her clothes and tags on the back of her shirts and probably why she's socially anxious and awkward. Reading about introversion also helped her understand herself better.

I agree with whirlingmind but think it should be taken a bit further.

First, Asperger's syndrome is a neurological condition and doctors/shrinks should be able to diagnose it when appropiate and when requested.

The question of disability pension, govt. support etc is a separate question, and should be treated as such. It will depend on age, severity of symptoms etc.

In Australia, we have a: Disability Support Pension
Financial support for people who have a physical, intellectual, or psychiatric condition that stops them from working or who are permanently blind. So there are lots of rules, and there is a points system to to see if you can qualify. So unless you are permanently blind, there is no condition that automatically entitles you to the pension, your level of disabilty must be assessed by an appropriate person.

There are some schemes to aid diagnosed young children cope in school as well.

So, it is in fact better than I thought.

I was self diagnosed early this year, but I am also 64, so don't see the usefulness of getting an official diagnosis. I have managed to cope so far (not always very well). I see my self diagnosis as an extremely significant event, as it has enabled me to see myself in a very different light, and explain my behaviour.

So, here at least the diagnosis does not automatically get you any support from the govt.

Managing epilepsy with medication is receiving support.

In my opinion:

If the type of support we are discussing involves things like medication, therapy, social skills training, etc., the Psychologist (or whoever is conducting the assessment) should include a set of recommendation along with the diagnosis. That could include additional assessments (e.g. a medical consultation with a psychiatrist).

If the type of support we are talking about is Government assistance, then a Government body should make a “needs determination” based upon the diagnosis + recommendations.

I think this is consistent with both whirlingmind and kabouter.

The biggest accommodation for an impairment that I have is built into the field that I am now studying, which is cognitive neuroscience, which allows researchers to have their own verry merry berry flexible schedule of coding/reading/writing. This is unlike chemistry or biology, which require researchers to work in big bright noisy labs that are sensory hellholes.

In research, we don't care how good or bad you're functioning in your life.

What we want is your autistic brain to study (while it is inside your head).

We also would like your autistic brain to be a pure autistic brain without other disorders, preferably.

As long as you have your autistic brain, as shown by your autistic behaviors and your autism diagnosis, then we would like to understand autistic brains and brain functions with the participation of your autistic brain.

As long as you can do our tasks, we would like to study your autistic brain whether or not you have job, spouse, children, friends, enemies, rabbits, cats, or worms, lots and lots of worms (that are not in your brain).

When we measure your autistic traits, we don't care how good or bad you're functioning in your life, as we only care about the traits themselves, the autistic behaviors indicating the autistic cognition that is what is studied in studies on autistic brains (while they are inside autistic people's heads).

I have no problem with people who are very high-functioning being diagnosed with autism, as long as they have and have always had the traits of autism.

The traits, those are what I care about.

The functioning and the outcome, those are not fundamental to me.

In iResearch, there are some patterns that correlate with traits, the severity of autistic traits, but not with functioning or outcome.

Personally, I like reading about autistic people who are high-functioning and doing what they want to do in life and having families that they want to have.

I would like to do what I want to do in life and maybe have a family too.

I do not think that these high-functioning autistic people are misdiagnosed.

Since they are autistic, they are likely to have at least significant social impairments compared to neurotypical people, and they probably worked hard all their lives and all the time to be able to do what they want to do in life.

Based on research, there could be a group of people (I dunno what percentage) misdiagnosed with autism due to clinician incompetence in taking childhood history.

I read one study in which some people with schizophrenia had been also diagnosed with AS, but a careful review of childhood history showed lack of autistic traits in childhood.

The problem is that the DSM criteria is used for more than just brain research. It's also used to decide who needs/gets support in school and/or from insurance and the government.

It appears to me that the misdiagnosis (between categories) or over diagnosis (between ASD and not ASD) was occurring primarily in the PDD-NOS group, not the AS. I've heard about half of all kids being dx were given the PDD label, because there was clearly some impairment warranting some kind of dx but they didn't fit the other boxes precisely. It's my opinion that Social Communication Disorder should have been included as an option within the ASD spectrum. I also wish someone would take a look at the high number of people who meet the criteria for both AS and ADHD (Tony Attwood says 75%) -- perhaps executive function issues should be an option in the ASD criteria.

My DS7 is not as impaired as the OP describes himself or herself. Some might argue that he is a case of over diagnosis, and should only get an ADHD or SCD label (it depends on what your threshold for a fixated interest is). Yet he cannot function in a general ed classroom, and there is clearly more going on than just ADHD can explain. I believe the new criteria are broad enough to include him, without also including a large percentage of the typical elementary school class who are managing to learn in that environment.

I also think with the right support now he is likely to eventually become an adult who lives independently, holds down a job, marries, and has friends -- in other words only needs informal support from friends and family -- but that he should not lose his diagnosis just because we help him develop the skills to cope.

It is obvious this is about people you have never talked to. So how do you presume you, a complete stranger, would have knowledge about how their life is?
You are creating a false dichotomy - an "us vs them"-situation that do not exist.



You word it like if AS is some brain parasite that controls it's hosts behavior. Autism is NOT separate from a person. NTs act like they do because it's natural for them. Autistics act like they do because it is natural for them.
You seem to view being NT as something extremely positive, and ASD as this horrible disorder because of the differences we have from NTs. Go sit with the other Autism Speaks eugenics supporters.



That is not what Aspergers is. So for you AS is a horrible disorder based solely on peoples acts against you - is being gay inherently bad because you experience discrimination? Is being black?
Being a woman statistically ups the chances of experiencing domestic violence and rape. Is being a woman a disorder? If a woman haven't been raped, or haven't told you that she have been raped, is she not a woman?



Any child would understand that if a texture offends you, you stop touching it. You should really go to a neurologist if your senses have been dampened, because that does not mean that you are becoming NT or growing out of autism, that means you have some neurological trouble. It is also a non sequitur because "not having knowledge of person having been bullied" or even "says they do not have sensory problems" does not translate to "has no sensory differences". Problems can be avoided, not traits. Any child could understand that if you have sharp and sensitive senses, and you are in a nice environment or have effective coping strategies, they won't cause any distress.
The notion that being autistic in itself creates distress in the absence of stimulus is false.
(with the exception of executive dysfunction, and that is individual and can become a non-problem with the right support)



Constantly whining publicly enough for a complete stranger to take notice is often a sign of being a whiny person, not always an indication of how their life actually is in any way worse.
Also, some find it interesting to talk about their issues, while others don't, and not all feel comfortable talking about private things in public.



That is a false statement.
As have been repeated again and again in this thread: There are no overdiagnoses and probably about the same rate of misdiagnoses as for everything else.



There should be a category for BAPs. But if someone is BAP is not for you to decide, and many BAPs suffer from a lack of diagnosis. It is not BAPs you are talking about though.
I am offended by the implication that you, a stranger on the internet, have some sort of knowledge about people you haven't talked to that them or their diagnosticians haven't.

^btbnnyr, that's really a good point about what researchers care about. Reassuring to hear that you guys have a more nuanced picture of what autism is.
People that do good (or good for them) should be an inspiration, not someone to envy or try to throw out of the "club".

Perhaps there should be a separate system for classification for research from the one for treatment and support. I'm bowing out of this argument for a while anyway (I might get sucked back in as seems to often happen)because IMO people are now just attacking the OP and anyone that supports her , getting very emotional and taking what she said personally.

Over time, I have come to suspect that jealousy is the main contributor to these types of threads on WP.

When I see autistic people able to do what they want to do in life and make a niche for themselves, I think that they probably have a lot of wisdom and practical advice to share with rest of us, and maybe we should listen to them instead of saying that they are not severe enough or impaired enough to be autistic.

Personally, I have learned some things from some autistic people who are higher-functioning in some areas than I am.

I applied some of these things in my life, and some definitely improved my own functioning in recent months, but I might not have thought of them myself without these other autistic people to model for me.

And autistic people modeling and advising is so much more useful than NTs doing same.

With NTs, I can usually tell that they are talking about something different than my problem, and their models usually dont' work for me, but with autistic people, it's obvious that we are talking about same problem, and their models have greater chance of working for me, but I have to take the steps and often deal with the discomfort of applying their advice.

I don't think this thread came about due to jealousy. More likely due to frustration with people for whom something wasn't a problem (bullying) claiming things about people for whom it was a problem and overreaching in response.

To OP:

I do not observe a lot of people on this site saying everything is fine with them? I see that usually come here for support as they are having trouble self-diagnosed or not.

As has been noted, you seem to assume things about people to some degree.

For example, the diagnoses were not available readily when I was young (for us 40 somethings). Also, statically women are go under diagnosed.

I am LD and have Asperger’s/ high level autism and I have sensory issues; as well as, some sight handicaps. I did not speak until I was five. I remember my mother telling me to make eye contact. I created my own sign language. I have sensory issues yes into adulthood. I don't drive. I fit the criteria of dsm V, as an adult. I have problems keeping jobs and interpreting people’s social meanings etc. My husband helps me to navigate the world to some degree. I do stim, under certain conditions mutism. Have I stated these issues previously, no. Do I have money for a diagnosis, no.

I have not laid this out for all to view in the past. I do think people coming here are seeking support because they have problems. As to increases in Asperger’s or autism found, it could be people are more aware of the condition as there is more public awareness?
As noted, I don’t think people go around claiming a diagnoses problem/ stigma because it is fun. I would recommend taking people’s concerns as valid and at face value. In particular, as we do not understand their full case histories.

Last edited by Briarsprout on 19 Jun 2013, 5:35 pm, edited 1 time in total.