Hi, There! (I'd Like Your Opinion!)

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You know, you're absolutely right. The more and more I read about ADD, I'm pretty certain that's affecting my life, too, along with whatever else there is going on with my brains. And, considering how little I understand (even now) about AS and how it presents negatively in people's lives, the addition of ADD to the equation is a nightmare. It also doesn't help that people/children with AS are often misdiagnosed as having ADD/ADHD. How can I begin to try to separate things out? I'm trying not to feel discouraged, but this is so daunting. There's so much to try to figure out, comprehend and examine. Normally, that'd excite me.

Additionally, at this point, I've got no idea if I'll ever be able to afford being diagnosed. Not only do I not have insurance, but I'm reading that most insurance companies don't cover the testing. Why is this? How is that not illegal? Furthermore, I wouldn't waste one second of my time or money on a doctor who didn't take my past into account. Certainly, there are cases of AS that are much more severe than others, and those people weren't able to learn to cope as well (or at all). So, they'd present fairly clearly in both physical signs and otherwise. But, it's a spectrum, even if a narrowed one, that allows for differing levels of severity--or have I got that wrong?

Interesting. The reason I asked is only because I am interested in various approaches to evaluation.

It would only be fair to explain that although history was taken into account during my own evaluation, history did not actually affect the diagnosis. The DSM manual actually doesn't allow for history, and is only interested in current symptoms. Obviously, I have a problem with that, and many professionals won't dismiss the history either. My psychologist did include the history in her report, but did not apply anything no longer obvious to the actual diagnosis. Thus, even though the report is clear about the fact that plenty of symptoms were present during childhood to qualify as AS, the actual diagnosis is PDD-NOS.

The practice of ignoring history as applied to specific diagnosis seems, well, stupid to me, due to the fact that all ASD's are widely considered, even by the pros, to be incurable. If they are incurable, then they are ever-present. Thus, if one had AS as a child, one has AS for life. If one displayed the symptoms as a child, but as an adult no longer displays enough of them, and AS does not go away, it only stands to reason that even though the some symptoms no longer display, AS is still present. If this is true, it also stands to reason that those with AS must be learning to overcome and hide symptoms as we grow older.

Just from asking others like yourself, how their own diagnosis was handled, I've been learning that either the methods applied differ from professional to professional, or how we as patients interpret the results varies from patient to patient, or both. It seems reasonable to believe that some of both is actually happening. For example, my psychologist never came right out and said specifically, "He doesn't have AS, because not enough symptoms currently display."

She did specifically list however, symptoms I had as a child that are now missing, and further explained that I had probably learned to cope, adapt and develop the skills later in life. It was up to me to connect the dots, put the whole picture together, and conclude that AS was clearly there as a child.

From there, it was only a matter of reading a lot of articles explaining theories about how Autistics might "learn" to develop skills that "mimic" skills that come naturally to most children. Though they are only "theories" the explanations make a lot of sense, and perfectly fit my own experience.

I agree that DSM doesn't cover anything about how we process body language, but there is a lot of documentation that many researchers of Autism DO feel the method of processing matters a great deal, even during the process of evaluation. I would even dare say most of them do.

No. You have that right. DSM-IV is the current manual of diagnostics from the APA. DSM-V, with revisions that are to combine all ASD's under a single diagnosis of Autistic Spectrum Disorder, is scheduled to take affect early 2013. Once that is in effect, ASD's will also have a scale applied that includes severities.


ADD with ASD can seem like a nightmare at first, but I eventually found how they interact in my own case isn't as complex as I thought. The complexity was in figuring it all out. There are:

1 - Symtoms and experiences that overlap.
2 - Symptoms that conflict
3 - Symptoms that compliment

That third category is a tricky one though. By "compliment" I mean they can either compliment each other in a way that is beneficial to you, or, they can compliment each other in a way that causes the two symptoms to be worse than they would be on their own.

Which symptoms fall into which categories, depends entirely on your own spectrum profile for each disorder.

One example I can think of, finally, of an overlapping symptom that probably everyone with both ADD and AS have, is the fact that personal interest and investment in a topic is practically the only time one can maintain attention and focus. I'm certain that if one has both, this trait is most likely even stronger than if one only had one or the other.

Just a quick afterthought that may help:

One mistake a lot of noobies make when self-evaluating, and that even quite a few professionals make, is getting distracted with AS/Autism traits they do not have.

It's not the symptoms you don't have that matter. All that matters is what the qualifying symptoms are, and whether or not you have enough of them. Most of us are "missing" certain symptoms. Hardly anyone, diagnosed or not, has every symptom.

This link lists the current symptoms for AS:

http://www.autreat.com/dsm4-aspergers.html

This link lists the symptoms for ASD in DSM-V that should be coming into effect in 2013:

http://www.dsm5.org/ProposedRevision/Pa ... spx?rid=94

Really? So what does the following actually mean (from DSM-IV TR):

There is no clinically significant general delay in language (e.g. single words used by age two years, communicative phrases used by age three years.)

There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

My understanding is that if the above criteria are met, along with other qualifying symptoms, you get to be AS, otherwise, it's HFA or PDD-NOS.

So maybe your (MrXxx) psychologist saw something in your early history which precluded a diagnosis of AS and forced a PDD-NOS diagnosis.

I must qualify my post. I looked up the meaning of 'clinically significant' and I didn't really understand the answer I found, so maybe I stand to be corrected on something here.

This is a great system! I like the idea of using it very much, though I'm not sure I can do this correctly, given the fact that I struggle with knowing which symptoms belong to what disorder, since there are overlaps. But, I'm gonna try it.

Ah, there's the rub. I have no concrete idea of what my spectrum profile might be for either!

This is definitely, definitely something I experience. I never thought about how often I tune out things that aren't interesting to me--or how irritated I get when someone continues talking to me about a subject I'm disinterested in. I'm not sure how severe this is--probably not very, compared to others, but it's all so subjective.



On the DSM-IV, Unrevised:

IA - (Much of this is dealt with, whether well or poorly, by my own system of responses/behaviors and so on.)

IB - (Though, again, when my concept of 'normal' may be 'abnormal,' it's hard to tell what 'appropriate to developmental level' really means.)

IC - (All of this, pretty much.)

IIA - (All.)

IIB

III - (Though, again, the significant impairment is lessed, in some ways, in that I have a caretaker.)



On the revision:

A1 - failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction.

A3 - difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people. (Though, frankly, imaginative play is more for children than for adults; no?)

B1 - repetitive use of objects and (potentially) idiosynchratic phrases.

B2 - (Most of this.)

B3 - (All of this.)

B4 - (All of this.)

C

D (Though, mild, since I have a 'caregiver' in my husband.)

Severities
Social Communication - Level 1
RRB - Level 1-2

I thought you needed social issues to be on the autism spectrum. If you are lacking that even if you have other traits like repetitive interests or rituals, you aren't ASD.

I'm not sure about in theory, but in practice, many clinicians will diagnose PDD-NOS based on communication challenges and restricted interests/repetitive behaviors. I'm not sure if this is technically correct, but I've seen it more than once.

I think that PDD-NOS is often diagnosed when a person does not have significant impairments in either the social category or the repetitive behavior category. So they may have very mild social communication issues, with repetitive activities in the ASD range, or social communication issues in the ASD range, with few repetitive activities. The DSM-V is going to require both categories for an ASD diagnosis, and in my opinion, that is the correct path forward.

History makes a big difference in the difference between AS, AD, and PDD-NOS, though... I was diagnosed mild-moderate AD based on my history (communication issues even though I had speech- I just couldn't use it very well and often lost my speech, lack of curiosity re environment, and delay in self-help skills).

History was very interesting in my diagnosis, because based on my childhood history, I was told that I have AD and would have been diagnosed as such in childhood. In childhood, I fit the Kanner's autism profile perfectly, with the various delays, except cognitive. However, as an adult, I was officially diagnosed with AS, and given a severity rating in the 99th percentile, basically in the border region between AS and AD. They seemed to have pulled this number out of their asses. This was because (1) I have learned to communicate through speech and am no longer socially aloof and (2) I attended elite universities and appeared to fit the Geek Syndrome stereotype of AS all too well. That second one is not very professional, but I understand that it was difficult for a professional to see me, speak to me, and diagnose me with AD, even though I met all of the criteria in childhood and enough for that diagnosis in adulthood. So I was pretty much misdiagnosed on purpose, with my own compliance, because I do believe that I fit the AS behavior profile as an adult and the AD behavior profile as a child. This is why I am a big supporter of the ASD merge in the DSM-V, because selfishly, that makes me make sense.