Reassessed

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So, I just got my results of the ADI-R and ADOS today. I didn't get any of the number scores yet (will get the report at a later date); however, I was told that I met all and greatly surpassed most of the cutoff scores. My diagnosis was changed from Aspergers (which I was given in a non-standardized screening at another clinic) to classic autism today after this official assessment.

I am not surprised--I really did not expect to be told that I did not have an ASD, and I knew she would likely diagnose me with classic autism if she followed the dsm properly. Anyway, I just thought I would post the results since I have been talking about this for weeks now.

Thank you for the update. I am glad that you got the one that fits you best.

Yeah, it really does. After reading all about the differences between AS and HFA in that Asperger Syndrome book, almost every time I fit more into the HFA category. I don't think there is a HUGE difference anyway, just many small, subtle ones.

Also, she did not diagnose me with co-morbid anxiety as the other place did. I really don't think I have social anxiety anyway, so this doctor was able to pick up on that as well. Overall, regardless of the outcome, it was a much better experience than the last clinic which was more of a nightmare than anything else.

Anyway, I was never diagnosed with it, but a therapist I had in 2003 strongly suggested I had social anxiety. At the time I had so much anxiety it was hard for me to differentiate, but my social issues weren't anxiety at all. My primary issue with social situations was dealing with people unexpectedly, when they disrupted my routine. I was okay dealing with people on my schedule but outside that schedule I avoided them and got really annoyed.

I think my inability to communicate with most people and the fact that I stay away from most social situations basically because I have no motivation to go looks like social anxiety to some people. A psych I had when I was a teenager was treating me with this and depression (I did have depression). My current psych was also treating me for social anxiety until she realized that was not what was wrong with me. Like you, I also was disturbed by unexpected people. I know people with social anxiety, and they hate crowds. I mind noise due to sensory issues, but I actually do not mind being in crowds otherwise. If I had social anxiety, that would probably bother me.

I don't think my tendency to avoid most social situations came up, except in the context of avoiding social situations that were outside my routine.

My family has a tendency to have big gatherings for some birthdays and other celebrations, and I don't go to any of them. I am actually going to skip my niece's wedding because the environment will be overloading and unlike most crowds there will be active attempts to either force me to participate or people insisting on talking to me and I can't sustain a conversation outside of my interests for more than a few minutes.

That didn't come up in the ADI-R/ADOS assessment I just had. My regular psych knows about this though, and I think it briefly came up in the first assessment that I had. Then they narrowed in on what they thought was the anxiety to try and push this awful new form of therapy on me (to help with anxiety, not autism) which was a nightmare. I think that is why they were so focused on anxiety--to sell me this terrible therapy that doesn't work for people with autism in general (according to my regular psych).

I will go to some family gatherings, but I often spend the time sitting in a corner alone. My family is used to this by now.

would you mind explaining to me your ideas on how HFA differs from aspergers? Becuase I'm still unsure which fits me better.

I can try, but this is going to be very lacking. I would suggest reading the book simply entitled Asperger Syndrome which gives extensive information about a variety of studies that show where AS and HFA individuals are similar and where they are different. While both are on the autistic spectrum for the key 3 impairments (the autistic triad), there are still differences between classic autism and aspergers.

First of all, it is important to note that what you are like today is not as important as your early childhood development. If you early childhood development does not qualify for a diagnosis of classic autism, then you cannot get a diagnosis of classic autism later in life. The same should be true vice versa as well. Despite the general differences, there are some people who have AS and others who have HFA who grow up to be virtually indistinguishable from one another.

Like I said, this is very brief in comparison to the amount of info out there. I will try to give a few examples though, that I can think of right now. Keep in mind that when I say "people with autism" and "people with aspergers" this means in GENERAL. I am sure there are always exceptions to the rule!

First of all is the development of milestones. According to the dsm, people with aspergers canNOT have a language delay. Most people with autism do have a language delay. While it is true a language delay is not NECESSARY for a diagnosis of classic autism, there is ALWAYS SOME form of communication delay involved (which can be found in, I believe, section B of the dsm). Communication is far more problematic for the person with autism than it is for the person with aspergers generally, as they age.

When it comes to motor skills, both gross and fine impairments can be found in both conditions; however, dyspraxia was traditionally seen as vital for aspergers (while not so for autism).

Another thing is that the vast majority of people with aspergers qualify for a diagnosis for nvld as well, while this is NOT true for people with autism. I do not have nvld, but I do have autism. If you ask most people here who have aspergers, I can bet almost all of them will be able to identify with nvld as well. The study in the book, I think said something like out each group tested, 86% with aspergers had nvld while only 5% with autism did.

Then of course, there is the IQ thing which is brought up here a lot and which is also supported in this book I am reading. Most (not all) people with aspergers have a much higher VIQ than PIQ, while the opposite is true for most people with classic autism. Personally, I never had a professional IQ done, so I don't know where I fall, but this is often the case.

Another thing I read in brief is that people with autism are far more limited in their Theory of Mind than those with aspergers, many of whom--according to the study--are not lacking in ToM (might be a bit impaired, but not lacking in the same way as it is with those with classic autism). According to the study in the book, only the group with autism lacked ToM, while those with Aspergers did not demonstrate a deficit, as based on at least 3 separate studies.

According to the information in the book, the nature of special interests also differs. For those with Aspergers, it is usually about getting as much info as possible on one topic. In autism, it is more about fixated interest on parts of things, object manipulation, on visual-spatial tasks, etc. I am sure both can be found in an individual with either condition at times, but I think this is the general rule.

Also, another general observation (again, I use the word general loosely because it likely isn't always this way) that people with aspergers want friends but are unable to sustain the relationships properly. Social ineptitude leads to social anxiety in many aspies. People with autism tend to be more withdrawn, and many do not desire friends. Social anxiety is far less frequent in those with classic autism because they care less (or notice less) about how they are perceived by other people. They can still suffer a lot from general anxiety though due to trying to live in a very confusing world with lots of sensory stimuli.

Anyway, this is just a brief list...even though it might not look very brief. I am only 1/3 of the way through the book, so I may add to this later on.

Anyway, the way I see it as that the differences can be subtle in some people and there are always exceptions. The difference between Aspergers and Autism should be based on your early childhood development mostly. While I scored above the cutoff for autism (rather than just above for asd in general) on both the adi-r and the ados, the reason she gave me for revoking the aspergers diagnosis and giving me the autism diagnosis is because of my early childhood development. That is what counts the most in what your real diagnosis is. There are some HFA people that seem to be more AS and some AS people who seem more HFA because not everyone fits into a neat little box.

I had issues with communication for the sake of communication, and a tendency to memorize phrases for use in particular situations - I don't know that I had as much trouble as anbuend, but I identify with what she and wavefreak58 have both said about early language use, and I have had yet another person suggest that my use of language is recognizable to her as typical for that kind of development - that is hyperlexia and the use of a phrase bank to communicate early on. I can remember getting in some interesting trouble from the use of said phrase bank (not realizing the phrases were offensive).



No dyspraxia. I do have issues here, but not to that extent. Mostly, I seem to have trouble with proprioception and knowing exactly where my body is, so I end up walking into things and having issues with going downstairs without a bannister or something else to hold onto, among other things.



I am actually really good with visual-spatial stuff, and I don't really identify with NVLD. I mean, I like to imagine places to write about them, and I can generally visualize such places fairly strongly. I can still clearly visualize the interior of the house I grew up in and visit every room. I mention this mainly as it was a fairly significant point of difference when I was comparing notes with this guy I know who has NVLD. There were others beyond that, but where we really parted ways was how visual-spatial I can be and he cannot.



I wonder how hyperlexia and early speech affects this. I don't know what my spread is, though. I had my IQ professionally tested once and was never ever shown the results. Online I tend to score high on both verbal and performance categories, although not consistently the same performance across the board.



I know I have deficits here, but not sure how much. I know that I get practically nothing out of tasks intended to invoke social imagination (like a video someone posted a couple of months ago, or trying to derive a story from pictures).



Both, actually. Not so much parts of things (not anymore, anyway - way more of that up through my teens), but the visual-spatial and object manipulation + getting as much information as possible on any particular topic.



The main reason I looked for people to socialize with was because my interest (gaming) required other players. My socialization dropped considerably as I got into video games. I don't really have a strong need to socialize, although I do like people in general and I'm willing to spend time with them, but I don't really "miss" them when they're not around.

I don't have a lot of social anxiety, and what I do have tends to be a matter of growing up with a narcissistic parent.

I know I did that thing in the "prove I'm not NT" thread, but I really do wonder if AS is the best fit. I know that ultimately the particular diagnosis does not strictly matter, but I really want to know for sure. Also, I am dubious about whether these differences are actually categorical differences as opposed to variations in autistic traits, if that makes sense.

Incidentally, said book is very good for collecting a lot of research on autistic spectrum disorders with some additional information on schizoid personality disorder and nonverbal learning disorder. I really appreciate the mention earlier.

To me the label mattered for the sole reason that I wanted to know exactly what was wrong with me and why (for people reading this newly, btw, I did not get reassessed for the purpose of having the label changed but rather for having the diagnosis done properly the second time around). I wanted the best explanation possible. When I thought I was NT, I still had classic autism. When I was diagnosed with Aspergers, I still had classic autism. I was always who I am today, and the label does not change that, but what it does is give me an understanding of myself (and helps me to accept the oddities and abnormalities I have that will not change). If ASD is something that is functionally limiting to you, I can't see the harm in getting the correct diagnosis for you--even though they will be all combined in a couple of years. If you haven't had the ADI-R or ADOS test done yet, but plan on getting it, the scores will help you see where you fall along with your early history of course. Even with the upcoming combination under ASD though, having the classic autism diagnosis before that happens is still going to help me understand myself better after the changes are made. This is the first time I am actually seeing a positive point on keeping the labels separate (but I don't care overly either way) because they are more descriptive separately, but still all on the spectrum. Did you say somewhere before that you technically fit the diagnostic criteria for classic autism? I mean, do you have that information from your early childhood--are you parents still in your life to give you more information if you need it? Regardless of the label you are who you are. Some people, therefore do not care, but that was precisely the reason I did care: if I had something, I wanted it identified properly.

I want to get the ADOS and ADI-R for the reasons you mentioned, as well as to have a stronger idea of my impairments and where they are. A lot of things I can identify and examine, some things I feel like I don't have the self-awareness to accurately judge. A lot of it is early history that I have only been able to get in dribs and drabs from my mother (like I was showing sensory defensiveness and a lack of interest in other people in under a year, and my first sentences were focused on tractors and horses), but she denies I had communication/language difficulties even though I have always had a hard time just speaking to communicate as opposed to passing along information, as well as strong difficulties saying what I want to say for multiple reasons.

For me, I THOUGHT I had the self-awareness, but I really didn't realize how much of that I lacked. Particularly being IN the interview, but not really a part of it, as my Dad spoke (and also when he and my mother discussed things the night before), I realized just how unaware I truly am. I desperately tried to get out of taking a parent there, but I am so glad I did not because I would have missed so much important information.

I hope this next question doesn't come out wrong--it is not a disagreement with what you said, just of genuine interest. You've said numerous times on these boards that you have had communication skills in early childhood consistent with those of classic autism. If you mother denies this, I am wondering how you know. I mean, who told you about your early childhood difficulties? Your dad maybe? A grandparent? I just wonder how you know if you mom denies it, because THAT would be the person you would want to bring to your interview if possible--or someone else who can give a more objective view.

Many mothers want to think their baby girls are perfect. My Mom openly admits now that I did not verbally communicate until age 2 1/2, then again at each 5 1/2 following my regression. In my baby book, she has my first words written in for August, 1984. I was four months old. I questioned her about this when I saw it a few months ago, and she said, "um, I wanted you to be able to talk. I was overly ambitious and you definitely did not speak for years later. I heard what I wanted to hear at that time." Maybe your mother did something similar in your case only is unable to admit that she was wrong?

My mom says I was "highly verbal." I watched hours upon hours of old videos from ages 2 and 3; I spoke THREE TIMES in those nine of ten or more hours. One or two (can't remember) of them where echolalic, too. I was totally, completely in my own world.

She denies it but she also describes it - I could primarily and only talk about my interests and was terrible at maintaining any kind of real communication. She also describes me repeating phrases over and over again from my favorite book at that age. She equates the vocabulary I demonstrated (thank you, hyperlexia) to the ability to speak and communicate well (along with intelligence), whereas I was using words and phrases I didn't understand in contexts that seemed appropriate without always knowing what I was saying.

I am also matching what she's said to my own memories, which I do admit are not entirely reliable. However, the occasions when I said things to people I did not understand because they fit in that context and got in trouble for it do stand out for me.

I hope that makes sense.