Asperger's Syndrome in Adults - link

I know I keep sharing links with you all, but I happen to stumble upon several good sites or blogs these days. I hope you don't mind.

This has been lying in my RSS-feeder for some time now. My initial thoughts were to comment some of the stuff it mentions, like - symptoms in adults. But, I assume such an entry would be me repeating my symptoms, and I don't think that is necessary?

However, I do find it refreshing when someone writes about autism in adults, and I'm glad someone does it. It's hard finding good information on that subject, and even more so on autistic women.

I know I've written about this before, but for me it's a very important point that cannot be discussed often enough. It's one of those topics that makes a real distinction be known between parents of autistic children and autistic children themselves. It's the topic of 'name-giving', 'definition' and so on.

On an online forum there has been several debates, finally emerging into a thread of its own whether or not one should say 'person with autism' or 'autistic'. It seems to be that the parents are all for the first, while the afflicted themselves prefer the latter.

Instead of trying to arrange the thoughts in my heads, I'd like to refer to the words of Jim Sinclair, which I was just recently made aware of through Coming out Asperger - Diagnosis, Disclosure and Self-Confidence (and if you haven't already, you should pick up a copy). At the same time, it makes me happy to see that he uses the argumentative style as I've done previously, in "Thoughts on words" and online elsewhere, where I've argued that I am, for instance, "a photographer" and not simply "someone who takes pictures".

Whoa, feelings

Feelings
Whoa, feelings
Whoa, feelings
Get out of my life

Remember that song by Offspring? I suddenly got stuck in my head this morning while I was lying in bed, pondering on this with feelings.

After the test I took last week, I have started to come to the realization that I am very much not on touch with my feelings. Don't read that as if I do not have feelings, because I do - and lots of them, too. My body knows my feelings, but my mind does not. A recent example is a fight I had with my mom where I stared crying, and I did not know I was going to, and did not really register that I did at first. My body is great at letting the world know what I'm feeling. I can begin to cry without "feeling" anything before it happens. When I am poorly, my voice gets slightly whiny, and I have a hard time controlling it.

This is what I do not get with other people - why do they seem so content (which I've learn means 'in a state of peaceful happiness') all the time when my body reveals more or less anything that goes on inside?

To me it seems like other people are not feeling anything at all, and that they are the ones with a "problem" since I have no idea what is going on inside them since their bodies do not act as mine does. I have learned to read body language, at least a bit. I know when my husband has to go to the bathroom, for one. But other than that, I am clueless.

After denying for months that autistics does not have Theory of Mind, and that we do have empathy, I have finally understood it - after lots of reading. I think I have been so dead set against those ideas because I have thought it to mean that we are stupid, or bad people, or... something. But it does not. Just as I have problems understanding whatever is going on inside me, we have problems relating to what others could be feeling right now unless they strongly let us know, either through words or bodily functions like crying. Of course, such actions require that we act, and that is a whole other problem, is it not?

As always, I am unable to follow a blog post through, and offer a conclusion. However, again, that is not really my aim for this blog *wink*

Parents are always to blame

I am currently re-reading Coming out Asperger: Diagnosis, Disclosure and Self-Confidence. Liane Holliday Wiley has the first chapter, which centers around telling or not telling someone you're an aspie.

A few pages into the chapter, she discuss how you can build an aspie person's self-confidence, and admits to being a little overprotective of her own kids. Instead of doing what she did, she propose a few ideas on how to make children aware of their own potential, that they are capable human beings, from a young age. Some of these are early on to let the child help decide what the family should eat, let the child pick out its own bed covers, try things the AS might prove difficult (for some, dance), and such. All in all she has ideas on how aspies can be well-prepared for the real world with the help of their parents.

My parents never knew I am aspie, and thus I was brougt up like a NT-kid, more or less at least, as you'd imagine. This included that I was expected to be able to do everything my sister did, and maybe even more, as I was the youngest. From an early age, I sliced bread and fed myself. I was early able to dress myself. 7 years old, I came home from school at noon, made two hot dogs (with boiling water) and looked after myself till they came home later in the afternoon.

Them not knowing (although they might have suspected something) has made me the person I am today. I can blame them for all kinds of shit that has gone wrong in my life, but instead of that, I'd like the readers of this post to know that sometimes bringing a child up like any other (presuming you don't know something's "off, etc), is a good thing. I consider myself to be "high-functioning", for the most part at least, and I owe that to my parents expectance that I am able to look after and care for myself.

Another disorder that is often co-morbid with autism is Alexithymia - a disorder where you have a hard time figuring out just what you're feeling and describing feelings to others. A link on a forum led me to a test where you can "check" if you've got it. My score came to 154.

This and That - nothing much to update about

If you are a recurring guest here, in my blog, you might have noticed the stat counter I've places on the right hand side. It's interesting, in a way - the first few days after I added it, the number of visits was to be expected; a few each day. But, after I merged this blog with my other one and changed the name on my profile, or, "stopped hiding", it's gotten quite a few unique hits as well as recurring visitors. The blog also gets quite a few page reloads - and I can say, not all of them are mine...

The question remains as to why.

* I haven't written any new posts since last Wednesday.

* The last post wasn't a comment to any news article about going-ons in the autistic society - it was on Autistic Pride Day, and a short one at that.

* I don't advertise for this blog anywhere. It's linked to from a couple of profiles on a few message boards, but I doubt that's where the traffic is coming from.

* I haven't posted a comment anywhere, linking to it.

If you're one of these visitors (which you must be since you're reading this right now), please indulge me and tell me how you found me. Do you follow me on a regular basis?


In other news, there are no other news. Life is slowly going by and nothing much happens. We (my husband and I) attended a wedding last Saturday. I'd been a bit anxious about the dinner and party due to social issues. They pretty much came true - I had a hard time "small talking" when my husband wasn't there (he had a flu and came and left the room "as it pleased" him - bless him, he wasn't feeling good), but that was to be expected. My initial problems making social is when no one initiates it. I can small talk, but only if someone talks to me first. The conversations usually die down pretty fast, as they did on Saturday; someone asks me how long I've known the bride, we talk a bit about that. Then they ask what I study in uni, I tell them. And then it goes silent. I have no idea how to ask something back. They usually leave at that point. I don't blame them.

At Aspies for Freedom, there is a new thread on recommendations of books on autism. So far non-fiction books were recommended, but today when I checked the thread, someone had recommended The Speed of Dark, which is a sci-fi book set somewhere in the future where a cure for autism has been found. It can only be used on babies, but a cure for adults are about to be found, and the main character is given the opportunity to take it. I've added it to my wishlist there as I am in desperate need for something to read and because it sounds very, very interesting. And, since I'm rude and all that, here is a link to my wishlist. If nothing else, I have a wide range of autism books on there - maybe you'll find something you want to read. Although the book is no longer on my wish list (since I got it), I can highly recommend Unstrange Minds - Remapping the World of Autism. It offers a "history" of autism - from when it was first "discovered" by Kanner and Asperger, how it was viewed as a form of schizophrenia, how autistics were treated, but also a good insight into how a few selected countries view autism today. It also explains why there is no "autism epidemic". A good read. Get it today.

Autistic Pride Day

Today is Autistic Pride Day.

Today I changed my profile here on Blogspot to include my real name. I also changed my user names on two online message boards to my real name.

Although I've done so, I have not included my surname. Proud or not, I have no real desire to shout it from the roof tops.

Meeting others on the spectrum

I think one of the most common 'fears' of those self-diagnosed, or "self-dx'ed" if you will, is the fear of thinking you're just imagining this, you're not really autistic, and it's just something you've made up to cover up something else. It certainly has been for me, although the semi-official diagnosis on Feb. 11, 2008 has made me feel more certain that I'm an indeed right.

Others have said it before me, and I'll say it here - meeting others on the spectrum, either with or without an official diagnosis might help you figure out in which camp you belong.

This spring I was fortunate enough to find a group of parents of kids recently diagnosed as Aspergic. Originally consisting of parents from a nearby municipality, I was accepted to a meeting as the first autistic person (although the parents often have traits themselves). After being very nervous in the car, I was happy to learn that these people were all great, and they made me feel very welcome and needed - they asked me questions and were genuinely interested (as far as I can tell). So far I've met these people thrice - two times in one of the homes, once at a café, with only two of them.

I've also been a part of two meetings consisting of auties only. One should think that in an area of a mere 181 000 people it'd be "hard" finding others on the spectrum. So far I have a confirmed number of 7, and I suspect two students on campus that I've run into (who seem clearly autistic), a professor who can be nothing but, and a few more.

Meeting these people has proven a very valid point, one that I cannot stress enough; each autistic is as different from each other as each NT is different from every other NT. What we have in common is certain traits. It's no use trying to compare us, and say that one cannot be autistic because she is not interested in the same things as he is. The traits that makes us autistic varies in severity, making us different and faceted people. It has also showed me that I have found my camp, no matter how many times I'll have to endure comments like "you're not autistic - you can talk!" and "you seem so outgoing!".

Petition against Autism Speaks

I think this is pretty much all over the autie-friendly sites in English, but if you haven't seen it yet, here is a petition against Autism Speaks. Unfortunately, it can only be signed once per IP.

Parents vs. kids, or, parents vs. adult autistics

Again, I'm sorry for not updating as often as I, perhaps, once did - Life has gotten in the way.

I'm about to wander into a topic I'm not too keen on blogging about - because it can be hurtful. I'll keep it brief, and to the point. This post is not so much a discussion as it is for information.

I once read a brilliant line; what happens to the autistic kid when he turns 18? Is he magically cured, or... does he die? You see, autistic adults exist, and there will "be" more of us in a very short time due to the increase in diagnosises made, which again is due to a better understanding about autism. This means that the society will have to "get used to" us in a different way than what has been the norm up until now. Of course, there has always been autistic adults (and I'm not just thinking about those categorized as 'low-functioning), but now we're getting more and more visible (think something along the lines of the "we're here, we're queer, get used to it"-mentality).

This brings up an interesting discussions, and possibly, problems. Parents of autistic kids are more than aware that their kids are growing up - but, what happens once they're adults? Will they be able to care for themselves? Get a job, get married, and have a family of their own? I believe many will - many already does.

I'm as lucky that I've gotten in touch with several parents over the last couple of months. Firstly, parents at www.autismesiden.no's message board. Later, at Asperger Rogaland. The latter is a 'real-life' group of parents of kids from the age of 9-17 (I think). I've only met them twice, but it's been nice meetings both time, with interesting discussion and a whole lot of epiphanies (at least for me). It seems that I'm not the only one learning and discovering things about myself and autism, but that I can help them, as well.

At the last meeting, Ivar came along as well, and he brought his mother. I hope they both will be regulars from now on.

Talking about that - Ivar and I are hoping to now form a regular group of youth and adults around here. We have out first gathering next Friday. If you're reading this, and is from the area around Stavanger, please check out MeetUp and our Google Group.

The chameleon

Another trip to the university library bore fruits. I came home with a bag full of book on autism that I haven't seen there before. They're very popular, it seems.

One in th batch is Donna William's Autism - An inside-out approach. I haven't gotten very much beyond the foreword, yet, but I do hope I'll enjoy it. I particularly want to bring up a paragraph that reminds me so of myself:

By my teenage years, I began to be too aware of the feeling of being alien. Unable to have even consistently shared true self-expression or real emotion with anyone, I grasped the absolutely emptiness of what the world held for me. My answer to this was to follow and mimic anybody who would take me along for the ride and to move through life as fast as possible do I didn't ave to stop to feel how bad and out of control it all felt. (Williams , 1996: 3, own emphasis)

As I've already mentioned, this hit close to home for me. Growing up, I was a chameleon of sorts. My AS "stopped" me from developing my own sense of being and I was continuously mimicking other people's meanings, sense of fashion and way to express themselves. I believe this is called social echolalia (which is also such a great word to say out loud!). It's not that I don't have my own personality, it's just that I have a tendency to take after whoever I'm around. I still do this. And I don't know how to not do it.

The problem with this is that I don't know how to really be me, because I cannot stop this form of behavior. The other problem is that there are stock phrases and expressions that are so 'alien' to me that I don't know how to use them, and thus, I am often perceived as impolite. The mere thought of saying hello when you meet someone on the street is uncomfortable, and I'd rather not be in a situation where I have to compliment anyone; I don't know how to best do it.

Meltdowns, or the lack of

Of course, I cannot for the life of me remember where I read it, but it was yesterday or the day before that I came across a blog entry (I think) where this autistic person said that (s)he had been able to refrain from public meltdowns. Anyone know which one I'm talking about?

As you might or might now know,

A meltdown is condition where the Aspie temporarily loses control due to emotional responses to environmental factors.

It generally appears that the aspie has lost control over a single and specific issue however this is very rarely the case. Usually, the problem is the cumulation of a number of irritations which could span a fairly long period of time, particularly given the strong long-term memory facilities of the aspie.

[...]

The meltdown appears to most people as a tantrum or dummy spit. There are marked differences between adults and children.

Children tend to flop onto the ground and shout, scream or cry. Quite often, they will display violent behaviour such as hitting or kicking.

(source)

I don't recall having had many meltdowns during my childhood. If I did, they were never called meltdowns. I was just a "bad girl who didn't know how to behave". The story that often comes up is that of the 3 year old me at the mall with my mom, "throwing a complete tantrum" so bad my mom had to pick me up and carry me under her arm out of the mall.

Several people describe how their autistic kids can be such angels when they're "in public", yet act as monsters behind closed doors. This was true for me as well, and is something I still do from time to time. I can be nice, civil and polite during "office hours", and then unleash everything once I get home. I'm not easy to live with, I know, and this is something I'm working on. I distincively remember being embarrassed them few time I "lost it", and I think therefore I started to restrict it to when I was home.

Do you think autistics are able to "control themselves" from melting down in public? Are there any gender-differences when it comes to meltdowns? The source I've quoted mentions that autistic adults often get depressed (and 'shut down') instead of melt down. I think this is particularly true for women (not saying it doesn't happen to men). Autistic or not, most "high-functioning" autistics become aware of the effect they have on others on one level or the other some time and begin to "adjust" their behavior. I'm not saying everyone does this, but I know I've done it, and I assume this is very true for the female aspie.

Let's face it. Girls are brought up differently, either the parents admit to it or not. That's just the way it is. Even thought my parents at least tried to give both of us a "gender-less" upbringing, the society we live in made it impossible. If our parents didn't encourage us to be free of gender-presumptions, the school sure as hell didn't. I remember being told that girls should be so and so (nice, polite) and boys could do whatever they wanted. And this is the problem with autism diagnostics today. Because boys are expected to be 'free', it's more "okay" for a boy to have ADHD/autism/whatever, but girls are so played down that most of them tone down their overall behavior + autism don't manifest itself the same way in females. This is a never-ending argument, so I'll just leave it as this; food for thought.

Household chores

I was always the lazy kid. I never cleaned my room. I've had piles upon piles of stuff lying on the floor because I "simply" cannot see where it all should go.

I never knew this could be connected with my now-apparent autism. Zosia Zaks writes in her book Life and Love: Positive Strategies for Autistic Adults that this is normal for some autistics;

While not everyone on the autism spectrum has trouble getting and staying organized, many of us have a tough time creating a comfortable place to live. (p. 27)

She continues:

Some autistic people have difficulty managing all the tasks that go into maintaining a home. What has to be done first? Where do you begin?
[...]
Autistic people may also have trouble sorting different objects in the home. For example, we may not realize that the enormous pile of "stuff" on the bed can be broken down into separate piles of clothes, books, papers, and trash, and therefore managed more easily. It may be difficult to sort and control things that arrive in the home, with newspapers winding up all over the place and packages left by the door for weeks. It may not be obvious where to store items either.
[...]
Well-meaning non-autistic friends or relatives can inadvertently put pressure on us or assume we are lazy, in fact, we may have be having serious trouble caring for our living quarters, futher fueling a sense of frustration. (p. 28-29)

All this is true for me. I seem incapable of sorting my stuff and as a result, there are books piled on the floor, DVDs by the computer screen (even though we have a perfectly funtioning DVD-shelf). Things pile up. Easily.

I've referred to myself as well-functioning in the past. I still think I am. To a certain point. The truth of the matter is that I, as said previously, function very well "in my own environment". This includes, but is not limited to, that I have a wonderful husband who take on a lot of chores (and leaves me with a very guilty conscience) as well as a mother who feeds me while he's away.

Still, it's not all that easy. Some say that what differ most autistics from those with Asperger's is that aspies have a "want" for a social life. We want relationships. We want friends. But it's kinda hard to invite someone over when your house looks like something out of movie dealing with what happens after the zombie-invasion and your house could be a set.

Co-morbidity

In one of his books, Gillberg says that 80% of children with Asperger's and High-Functioning Autism will develop psychiatric disorders during puberty. He mentions disorders like depression, psychosis, schizophrenia.

A report from one of Norway's leading centers on autism reports has a report on the issue. Part 2.4 of the report deals with co-morbid disorders and sum up the research on the prevalence of different co-morbid disorders. However, the research results are not unanimous;

1) ADHD - Between 38% and 50% of those with AS/HFA mets the criteria for ADHD.
2) Depression - 4%-41%
3) Bipolar Disorder - 6%-27%
4) Tics/Tourettes - 6%-20%.
5) Anxiety - 13,6%-50% have general anxiety. 4%-14% have separation anxiety. 7%-23% have phobias.
7) OCD - 1,5%-25% meets the criteria, although as much as 50% have symptoms.
8) Schizophrenia - The risk is assumed to be the same as the general public.
9) Schizoid disorder and other paranoia disorders - No clear connection.
10) Personality disorders - Can resemble AS/HFA
Aggression - 13% had a morbid fascination with violence, but fewer that the average of the US population had committed acts of violence
12) Other
a) Eating disorders as anorexia, compulsive eating, compulsive drinking, purging, tirual eating and pica (appetite for earth and other non-foods). No known connection.
b) Sleep disorders affect many. Often noticeable before 8 years of age.
c) Gender identity problems - greater risk, but there are often sensory issues behind problems with gender identity.
d) Little to no knowledge on drug use.

In his book, The Complete Guide to Asperger's Syndrome, Tony Atwood argues that other disorders, like depression, is not a problem until the child becomes aware that it is not like the other children. It's not there until the child starts to feel left out during playtime, and the 'otherness' continues to grow more and more till children reaches puberty. AS children are often behind their NT-peers when it comes to flirting and 'noticing the other sex', and it is during this time (when all children are more vulnerable) that AS children feel even more left out. Having normal to above normal IQ, AS kids are very aware that they are different and in their struggle to fit and be like any other kid, they are prone to develop depression.

Myself, I have been depressed for as long as I can remember. Most of my childhood memories are from situations where it, once again, became apparent that I did not fit in, that I was not like the other girls in my class. I didn't fit in with them and I didn't fit in with the boys. I was somewhere in the middle, trying my best to be liked by both groups. I failed. The girls shut me out from their little groups and the boys called me names for, I guess, trying to hard to be liked. This lasted through jr. high.

Once in high school, things got better, but I still had problems making friends, and I was still depressed. My depression was not apparent to myself, that is; I didn't think that I was depressed. It was not something I was aware of. It just was.

During all of my years in school, there have been days where I've stayed home due to the depression combined with the anxiety of meeting people and having to be friendly and social. There have been days where I've been so drained due to excessive social contact that I cannot dread another day where I have to 'make social'. It's been easier to stay in bed. This wasn't just in high school, but during elementary school as well. No one did anything about it. Every year I've had too many days of absence. Nothing was ever done about it. Not by my parents and not by the school. Maybe if someone had stopped and asked why, the AS could have been picked up on earlier, and I could have had it easier. But at the same time, I'm not sure what I would have preferred.

Since no one noticed I'm in a place I might not have been if I had received the diagnosis earlier. If I had been diagnosed in elementary school there might not have been the same expectations when it came to school work, etc, but I could also have had it easier now and not been described as lazy. I'm not lazy, I'm just scared of not coping!

Professionals being vague as to not frighten parents?

I'm now doing something I said I wouldn't. I'm about to make a post where I'll try to philosophize and speculate on autism issues. Please note that I am not a parent. I have no idea what it's like to love someone, a child, as a parent, so I don't know how scary it can be (and most likely is) to have a child diagnosed with autism. Please also remember that I sometimes have problems putting myself in other people's situation.

Since I've started reading about autism (which has become my new 'special interest'), I've been made aware several times that some people say that their child has, for instance "Asperger's with delayed speech development". This puzzles me, because everything I've read points to something else. Asperger's is a form of high-functioning autism (from now on referred to as HFA), yes, but... You can have HFA without having Asperger's?

This is the area that probably causes the greatest controversy. Both ICD10 and DSM IV state that for a diagnosis of Asperger syndrome then spoken language development must be normal. Children with high functioning autism may have had significant language delay. However, Asperger's original descriptions of the condition stated that speech and language peculiarities are a key feature of Asperger syndrome. Often diagnoses of Asperger syndrome are made when a child is quite old and they or their parents may have difficulty remembering the details of their language development. (Source)

I'm wondering if perhaps, since so many parents say that their child has Asperger's, but at the same time that there has been a significant language delay, it's because the prospect of having an autistic child is so terrifying? Is it perhaps that, because you avoid the 'autism' term by saying "Asperger's Syndrome", you're soothing the parents, telling them "It'll be alright"?
(Page discussing the prognosis of individuals with Asperger's) If someone can provide some insight on this, that'd make me very happy.

Coming out Asperger

I think the question of when, if at all, to come out is something everyone 'outside the norm' thinks about from time to time, whether they have done it or not. After discovering I'm autistic last year, the thought of telling others have popped into my head from time to time, but I've previously dismissed it because I haven't had the validation of a professional. Even though I've opted against doing it before, I've prepared myself for the time when it might just happen to be a situation where it will be appropriate and maybe even natural to speak up about the condition.

As every adult with ASCs know, there is a serious lack of books about and research on ASCs in, well, adults. Most of you have most likely already read through the books there is out there, but if you haven't picked it up yet, and wonder how to best disclose, I can recommend Coming Out Asperger. It's a book for the adult reader which deals mostly with how to come out, to friends, partners, co-workers, etc. I'm not trying to say that you should follow the book to a T, but maybe it can provide some support and insight?

My biggest problem to date with disclosing is that I have problems voicing my problems. This has been true for the better part of my life. I've never had a close relationship with my parents. Close is perhaps not the best word - 'personal' is more fitting. It's hard to suddenly have such a relationship with your parents when you're 22. It would be odd to suddenly try to change this relationship, not only because we've never been close in the 22 years I've been on this earth but also because; why should I now disclose this. What is it with Asperger's that warrants a disclosure when more or less nothing else in my life does?

The other relationships where it would be "sensible" for me to disclose is to friends. Speaking freely here, I don't have friends. I've never had. I have acquaintances, but not friends. There are people I talk to when I'm at the university where I study, but I seldom, very seldom, engage socially with them out of the university setting. It's not because I haven't wanted to, but because I seem unable to connect with them on the same level as they connect with each other. The question then is why should I disclose? Maybe because I want a better relationship. I want friends. And friends share, don't they?

So, how should one disclose to potential friends? I already have. Unwillingly, but none the less, I have. One of the girls added me to her FaceBook some months ago when we first started talking, but I guess it was just a month ago she actually looked at my profile and noticed the groups I've joined. If others have done the same, no one's ever said anything. Yet, I've never disclosed using my voice. I prefer to express myself in writing.

The question of why I'm a member of groups for autistics where written on a note in lecture, shuffed through the rows of students and given to me, somewhat discreet.

Hey, why are you a member of so many autism communities on FB?

I froze. I completely froze.

How on earth am I gonna wriggle myself out of this one?!

A hast phone call to my partner during recess gave me some support.

Tell her if you want to. I think you should, but this is your decision.

I didn't tell her. I hurried a note back saying it was "kinda complicated" and that I could tell her later - a few of the girls were going over to her place that night. It didn't come up. Not in itself and I didn't find a suitable time to tell her. I came home and my thoughts of myself was that I was a coward.

The disclosure finally came, in writing, the next day. I wrote a message over FaceBook, and she replied within the hour. It felt nice. Liberating. And once again I'm finding myself in a situation where maybe it would be appropriate to tell. I'm just trying to muster the nerve to do so.