Gifted Issues Discussion homepage Forums Twice Exceptional Asperger's - "20% grow out of it"

I read that 20% of those diagnosed with Asperger's grow out of it. Is this true? Should I dig up the quote? This would move it to the "syndrome" status in the DSM IV, wouldn't it?

Also, an article on the OASIS website stated that anorexia in girls is associated with Asperger's.

Seablue, I'm not sure where that statistic came from, but I wouldn't believe it.

It is true that many people with AS learn to deal with their symptoms effectively, so that they don't appear obviously autistic. Some people crow about "losing their diagnosis" or "overcoming autism." It's hard work, but people can really improve their social skills dramatically if they are motivated. My DS8 has done wonders in consciously trying to learn which of his behaviors trouble other people, and eliminating them, and I expect this to continue to improve with maturity.

At the same time, autism is defined in the DSM as a lifelong and pervasive disability. I know adults who are managing it successfully; but I don't think I'd say that any of them no longer has it. They usually work hard to do things typical people take for granted. It can be a very happy life; it's a life marked with certain ongoing challenges to overcome, to be sure, but it's doable.

As for the anorexia: one of the symptoms of AS is anxiety, and there are often co-occurring conditions with AS; for some people anxiety drives eating disorders. I wouldn't be surprised to see a link. At the same time, I wouldn't assume that all girls with AS are high-risk for anorexia; I'd wait alertly and see what develops with your particular kid.

AS is a syndrome, which means it's a collection of co-occurring symptoms; few people have them all, and they appear in interesting combinations. You can't assume your child's path will follow anyone else's.

DeeDee

I think that some kids are incorrectly diagnosed when they are younger, so they appear to "grow out of it." There is no growing out of an autism spectrum disorder. With early intervention, however, kids can accommodate very well. Now that our son is 8, people act surprised when we tell them about his ASD diagnosis...but he has had therapy since age 2 1/2 so his behaviors don't stand out as often. Nan

Here's the link to the paper cited by wikipedia, re: the 20% cure quote:

http://www.waisman.wisc.edu/family/pubs/Autism/2003_symptoms.pdf

The question about this and the anorexia is not my concerns about my daughter's future, but more about a retrospective survey of the gene pool she comes from! Some of her behavior at this age looks like some of her relatives', but most of those relatives are fine as adults, including those who had anorexia.

The anorexia article, as I read it, was more saying that anorexia might be associated with AS, not the other way around. In the past, anorexia has been thought to be associated with OCD.

In all this reading I have become acquainted with a new term, "neurotypical." How funny!

Nan - great news about the improvement due to early intervention.

Reading through this paper, I think the results are more indicative of the inappropriateness of the current diagnostic criteria for diagnosis of adults with Asperger's. The symptom profile of individuals with Asperger's changes over time (this is reflected in the data) but interpreting that as "outgrowing" the syndrome doesn't make sense. Asperger's is a developmental disorder which means that a person with Asperger's will develop differently, but they will still grow and change. What doesn't change are the underlying differences in how the person perceives and processes information about the world.

That makes sense. Have you considered contributing to the wikipedia page?

The article was published in 2003, which is quite old, especially for an emerging topic.

I keep searching the literature because her aunt and uncle have more obvious signs of AS, but I am stuggling to find info on identifying preschool girls.

Seablue, I bet if you ask for reading material in the Girls forum at OASIS you'll get some answers. There are some parents over there with AS girls.

Anecdotally (we have a female cousin with AS), I'd say they get missed because:
--many are "sociable"-- ie they want to relate and have friends even though they have poor skills for doing so. (This is also true of some AS boys.)

--they don't all have huge meltdowns; sometimes they are just as anxious but many internalize it, so they look extremely "well behaved" and schools can ignore them.

--they are often taken advantage of because they can't read social situations or the intentions of other kids; again this is often mistaken for compliance.

--they often display play behavior (ie, they are not lining up toys, but playing with them)-- but their play can be heavily scripted, repetitive, or echolalic. It looks more like real play than the play of AS boys does, but it's still not functional.

I would watch for real, back and forth conversation: can she build on someone else's idea? Or does she just lecture?

Starting to see AS in family members is pretty usual once you suspect it in your child. Our family is sprinkled with AS-type quirks... and some adults who are clearly diagnosable but were missed because the diagnosis didn't exist back then. For me it just confirms the genetic nature of ASDs.

DeeDee

I would call that extremely encouraging for the long term!

DeeDee

I am wondering if the "out grow it" idea is similar to what folks say about ADHD - that many adults outgrow it. The research in the ADHD realm says that adults often learn compensatory strategies, but the underlying difficulty is still there.

Isn't this what early intervention is about - teaching the person the skills and strategies needed to have an easier time of it?

Unfortunately - I have often run into situations at the HS level where students with diagnosis such as AS or LD have worked so hard and become so successful at developing compensatory strategies that institutions pull the supports and services claiming a cure and lack of need. But, this is an entirely different topic.....

Autism still has such a stigma that many parents don't want to "label" their kids. If there's a chance of losing the designation, some people jump at it (parents to believe they've "cured" their kids, schools to save money)-- which can sometimes mean kids no longer get the supports they need. Not the best thing for the child, but the social pressures at work on the adults are real.

DeeDee

Okay, I'll do this and ask her preschool teacher about it. She can certainly dominate, but she does back and forth with me.

Last night, New Year's Eve, we let her stay up and she fell asleep in the LR at 9 pm. Later on, around 2:30 am, after a fitful sleep, she had a screaming, thrashing melt down. I think it was because she didn't go through her normal, rigid night time routine. I had to redo the entire bed time routine, including saying her prayers exactly the same way every night, to get her to sleep.

The extremely rigid routine bit is distressing, but I'm learning to work with it.

At least in three and four year old preschool classrooms a lot of kids don't do a ton of back and forth. A lot of verbal kids who don't have AS tend to go on about their own topic. They don't expect a lot of back and forth because many kids at that age haven't mastered it. The key for me would be can she understand why there should be a back and forth exchange. If she can do it one on one I see that as more telling at this age than if she can do it in a group.

Speaking as someone who should have been diagnosed as a child with Aspeger's and/or ADHD...as a child and well into my teenage years, I don't think it goes away, it does get hidden or worked through. I could not read negative emotion well and internalized my own anxiety and anger. I could not hold a conversation that flowed normally, I was always following my mind to wherever it was going even when speaking with other people. I hated small talk.

At some point (the reason for which I brought up in another post), I decided I needed to be able to act normal. I started catching all these little things and ways that I behaved and working actively to fix them. I can honestly say that I didn't fully succeed, but it's close enough that most people can't tell. I have to prompt myself to follow the smooth flow of a conversation, or about which greeting is correct for what. But most people knowing me would not peg me as having AS or ADHD.

Thanks, Artana, for posting.

Maybe "grow out of it" was a feeble way of saying, "compensated by developing coping skills." We are going to work on our parenting skills to help DD with her skills at age 4. Her uncle and aunt with AS were not identified until they were in their 50s.

Artana, it's amazing and impressive that you were able to "bootstrap" yourself into social skills.

How much energy does social interaction take for you now? Is it exhausting to spend all those extra cycles prompting yourself, or have the skills become sort of habit for you?

DeeDee

Seablue, I think by "grow out of it" they mean "no longer be diagnosable because outside observers can't see symptoms clearly in the person's behavior." Or, learning to "pass."

What that doesn't account for is how hard it is to maintain from the inside... one autistic author (I forget the name) writes that she loves family and friends, but she is working at it every minute when she is with other people, including her husband and kids. It sounds taxing... hence my question to Artana.

DeeDee

I agree - while compensating can yield benefits, it must take an awful lot of energy to maintain. Hence, the person hasn't really grown out of it. Instead, they've learned how to work around.

It is. Oddly, I am a fairly social , and I hope, nice person, but it's really really tiring sometimes. Especially when I'm in one of those conversations where I know that any other person would be sure what to say (comforting or whatever) and I am stuck trying to find some non-lame way to answer. I prefer being around people who don't like to small talk, because that's hard as well.

It is not, however, as hard as it was in the beginning. Some things do become habit, and I can deal with certain parts of a conversation without thinking. I suppose it's like practicing anything; it's muscle memory. There are moments when I wonder if I really should have spent so much of my mental energy on trying to fit in and maybe I should have just let myself be quirky and spent that effort on something productive.:P


I am, in part, a trainer, and I actually do really well at training, because it isn't conversational. The questions are always direct about a topic we're covering, so they're easy to answer. I do really well in intellectually stimulating discussions and arguments. I'm still drained after an 8-hour bout of training, but it's not as hard as 8-hours of emotionally laden conversation would be.

"Learning to pass" is it, exactly.
After my daughter (now a young teen) acquired her label, my sisters and I began discussing things that we had just assumed were normal, or individual weirdness. For example, my sister didn't know she was faceblind until she was fifty, she just assumed it was a personal failing. None of us were diagnosed as children back in the Dark Ages, neither was my husband diagnosed as ADHD, which he most assuredly IS. But we've all learned to cope, to pass; we've all gone on to be reasonably functional adults with an appalling amount of higher education between us. Even at my daughter's age, she looks considerably less "autistic" than she did at four or six or nine. She's got friends. She goes to sleepovers-- after which she hides in her room, overstimulated, the rest of the weekend, but being a teenaged girl, the hiding is not out of the realm of normal.
And she's at the age when some of the "gifts" of her Asperger's are actually more prominent in her life than the shortcomings. What kid in advanced classes wouldn't kill for an eidetic memory and an ear for dialog?

Yes, you said it so much better - it was what I was trying to say.

This is interesting. I'm a 32-year-old Aspie female. I was diagnosed about 4 years ago when some sensory difficulties at a workplace made me look more into the cause. When I was younger, I had a lot of difficulty socially, but growing up and working in the corporate world helped with a lot of that.

Quirky works just fine in my line of business as long as you have the basics down. I have quite a few close friends now -- people even came to my wedding!! (I say this as a joke, but there was a time when that wouldn't have happened).

Anyway - back to the topic. I still lecture. That's the big thing I'm trying to work on right now. It drives my family nuts. In fact, this post is starting to sound like a lecture.

I recently went for and got promoted to a manager position so I seem to be doing pretty well. Nobody who I've told since my dx has ever noticed anything off, but I've also grown a lot since I was younger.

In a way, you could say I "grew out of it" because you can't tell anymore, but it does take me a lot of work to handle the things I do on a daily basis. And I still rely on my husband to make most of the phone calls (unless it requires lecturing someone) .

I'm often tired and overwhelmed and need calming activities at the end of the day. I participate in an autism forum and check in there about 20 times a day (even though it's not that busy). It's just good to know there are other people who have to work hard at these little things too.

It's possible that being both gifted and female may have given me some advantages in "learning to pass" with Asperger's. Probably other factors too that aren't as immediately obvious.

Eldertree, I love the description of your family here. Sounds like a successful group to me, and also a group that will do well in guiding your DD about how to live with the quirks she's got.

May we all do as well!

DeeDee

Adhoc, I love your sense of humor!

Congratulations on your promotion. What an amazing story you have.

Adhoc, I am always thrilled to hear of someone succeeding as an adult with Asperger's. Can I ask what line of work you are in?

Congrats to you for making your way...

DeeDee

Thanks guys.

I'm in IT and I was recently promoted to manager of the QA team. I work in the healthcare industry.

I find it's a good area for me, personally. My social skills are actually pretty good for IT, the people I work with get the way I think, and those on the healthcare side of the business tend to be very warm, considerate individuals.

Before QA, I worked as a Business Systems Analyst and was often called upon to translate between business and IT (something I really enjoy). I find QA has to be very consultative to the customer in order to be successful, so it's a similar environment.

Both areas are also very detailed oriented which takes advantage of my super-aspie-power of intense concentration.

See? That. Coolness.

I think you are right Cathy,

I recently took my DD17 in for a complete(?) diagnostic evaluation and I was given the Gilliam Aspergers Disorder Scale to complete. Reviewing the questions, I could see that most of them applied to my DD frequently but the instructions say:

0= you have never observed this person behave in this manner,
1= person behaves in this manner 1 to 2 times per 6-hour period, 2= person behaves in this manner 3-4 times per 6-hour period, 3=person behaves in this manner at least 5 times per 6-hour period.

I can see how I would have very different answers on this if I was completing it for her when she was 5 than today because really, how many times in a 6 hour period is an adult (or 17yo) in a position to display "having difficulty making believe or pretending" or "expressing feelings of anger or frustration inappropriately" or "difficulty playing with others".

It seems pointless for me to even complete this form unless I were to stage opportunities to elicit the behaviors. I don't think most adults have the natural opportunities in their environment to exhibit the same behavior 5 separate times in a 6 hour period. Or am I reading it wrong? If my DD continues to monologue even after I have asked her to stop talking 5 times is that 5 instances???

Yes, that scale is clearly worded to work better for kids.

At the same time, isn't "difficulty making believe" similar to "telling a white lie" and other socially flexible behaviors that most adults engage in but adults with AS struggle with?

"Difficulty playing with others" for an adult is difficulty in compromise, two-way conversation, or adapting to and acting on someone else's ideas. The concepts are not that different-- but GADS should really create a version that names the desired late teen/adult behaviors, so it's clear.


Maybe your workplace is varied... but many workplaces consist of meeting after meeting, which elicits similar behaviors all day. A school setting might also yield a lot of instances. Home is least likely to elicit lots of unwanted behavior, because it's the most socially comfortable place for a person with AS.


Yeah, I'd say that's 5 instances for this purpose.

DeeDee

Thanks DeeDee,
I hadn't really thought about rewording the questions to make them applicable.
She is home-schooled (mostly self-schooled) and taking college classes where I can't observe her so I guess that makes it more difficult.


So then yelling, throwing something and curling up in a catatonic ball on the floor in response to my taking away her Laptop at night would count as 3 instances of reacting inappropriately rather than all part of one instance? Gee-sh, I think I need you to come here and help me fill this thing out!

Does she get into trouble for not having work done (at all or not on time), trouble with group work, conflicts with professors, etc.? These issues should be reported to your tester whether or not you can record them on the GADS. But I do think you should ask your tester what they want you to write on the GADS in this instance; it does sound to me like the eval is in order and you don't want them to miss something just because the questionnaire is foolish. Are they also doing the ADOS?

I agree, it's much harder to judge when you can't see them in the contexts where they struggle. For our elementary age DS who has AS, we send an observer into school to take data. It would be harder for a person who's 17.


Heck, that one's complicated for counting purposes... and doesn't sound like fun for either of you.

I think you need to hand the person who's doing the eval a list of data taken at home (descriptions of what set her off and what she did in response, an "antecedent-behavior-consequence" log) that document this sort of thing; that will provide important supplementary information to the standardized tests.

DeeDee

That's a good idea, I will write up a log and send it with the GADS. I am not sure what tests have been given so far or if we are done with testing, DD was there for 6.5 hours and at the end the diagnostician said she didn't observe anything that would lead her to question AS but since I had listed that as a concern on the paperwork she gave me the GADS to take home and mail in.

In the waiting room I saw an article on ADHD and sleep issues which I commented on because it said the typical person with ADHD has an internal clock causing them to prefer to sleep 4am til noon which is spot on for my DD. The Diagnostician then said she did see some things that raised flags for ADD/ADHD and then described her grown daughter who has ADHD so I am guessing that is probably where she will head with the diagnosis. We will meet on Valentines day to discuss the results. I suspect if they feel the GADS warrants it, there will be more testing since they initially quoted 2 prices: one with, and one without the AS test and they charged me sans AS testing.

DD has only had one conflict with a teacher that I am aware of (I too had trouble with that teacher but that is a whole 'nother story), that was over 2 years ago. She does seem to have trouble with missing deadlines/not turning stuff in though. I have been inclined to think this was mostly by choice in less than stimulating educational settings where she deemed the "missing" work to be pointless busywork but I could be wrong.

This may sound awful but one thing I worry about is that because my DD is highly intelligent, somewhat manipulative and quite an actress, I don't know for sure how real on uncontrollable some of her issues are. I know she reads about the different exceptionalities so she knows what traits are typical for which diagnosis. I believe she has studied them in order to help herself figure out her own issues and I may be being overly pessimistic, but it seems that some (not all) of her issues have developed/become worse lately. I don't think she ever had meltdown tantrums or overt displays of anger in public like she does at home but the at home stuff seems to be getting worse. Maybe it's just teen hormones adding to the mix, or the fact that I am suddenly so much more involved now that I am not working and she resents the new level of "supervision".

Gee this is long, I guess I should start my own post on this...

Hi Nik,

AS and ADHD can be very hard to distinguish, especially in girls/women. And sometimes they co-occur. I hope your tester has a lot of experience with both spectrum and attention issues.

In your shoes I'd phone them about the GADS and ask them the question you posted here about how you should fill it out... see what they tell you to do. Especially since there is a lot riding on it (whether they decide to test further or not) you surely want to do it accurately.

Our practitioners use the ADOS as the best test for distinguishing who's on the spectrum, not GADS. The ADOS is more thorough and has different modules that are tailored to different age groups; it may be more appropriate for your DD. It doesn't take long to give (45 min.) and is very informative.

If she's spending time reading about diagnoses, she may just be trying to figure out why she's different. This is tough stuff at any age, harder for a teenager. Having an accurate diagnosis (if one is appropriate) might help her start to make sense of her difficulties. I'd find it unlikely that she's purposefully mimicking a disorder, though I suppose anything's possible.

If she is highly anxious or impulsive, some behaviors may look "chosen" that are really driven by anxiety or impulsivity. Our DS is like that; sometimes his choices are wholly unreasonable from others' perspective. It is very frustrating for the people around him; it looks like sheer manipulation, but he's sometimes terrified and behaving accordingly. Anxiety meds and attention meds both made a difference for him, as did behavior therapy.

HTH
DeeDee

Interesting, my DD has claimed many times that she doesn't know the meaning of the word stress and has never felt it. (She loves to take tests and does very well on them, even the ACT and SAT, she never bothered to study for either yet she did really well). The Diagnostician told me however, that my DD has loads of anxiety and that she observed especially extreme anxiety during the writing portion of the test. The extreme behaviors at home seem to be related to discussions of work progress (or lack thereof) and/or the dreaded taking away of the laptop (like taking heroine from a junkie).

I'll call the center tomorrow for help with the GADS if the freeze doesn't shut everything down again. I am now hung up on all of the cognitive development questions: "Does child learn like average children?" etc yes or no. Of course the answer is no but only because she is so far beyond average, but I suspect they will interpret "no" to mean she doesn't learn as well as average children...sigh...I am not very impressed with this test.

Nik, our DS8 has Asperger's and had a hard time learning to identify his own emotions. He just didn't always connect how his body feels (heart pounding, etc.) with the words we used for those feelings (stress). Learning to deal with anxiety has been in part a process of learning to recognize how he's feeling so he can manage himself effectively.


She sounds really frustrated. Is she "stuck" on the laptop? (i.e. at the expense of other things a person her age should do?)


Me neither. I hope the tester will understand the inappropriateness of these questions to your DD's particular situation...

DeeDee

Hahaha, that's the big question: what things should a person her age do? As she has pointed out, around here most people her age are pregnant, smoking, drinking, getting tattoos and piercings, doing drugs, making drugs (meth) or working at becoming pregnant. So her laptop and cola addictions really pale in comparison.

She was doing volunteer work twice a week until the college classes started and now she is driving herself to school 5 days a week (50 miles away) and Karate, and she does practice her musical instruments, but I would say that she still spends 8-10 hours a day on the lap top and if I don't take it away, she'll be up all night on it and sometimes has trouble getting up in the morning. It's like she has no control over it so I am taking it away in the evening which isn't going well. We are in a rural town and she has no friends here other than her online ones scattered around the globe so I can understand a need for a certain amount of interaction online but I think most of the time is spent playing games and watching TV shows. I never let my girls watch more than a couple hours of TV but after my ex bought them laptops a couple years ago it became a huge struggle since they believe I have no right to take them away. The battle continues...

I'll say. She must feel like a fish out of water with those peers.


I'd be concerned too. Even if it's "social" time, that's too much if she can't regulate it.

This is tough stuff-- I hope you get good answers from the eval.

Best,
DeeDee