As I watched Oprah yesterday (the episode with Jenny McCarthy and how her son was magically "healed" of his autism*), I couldn't help but notice how she worded her replies/monologues. I'm not going to address all of it, but what struck me is the difference between her and myself.
She said it was important to say child with autism, not autistic, because the autism isn't the only thing describing the child. That, of course, is true. However... We have no problem saying that someone is, or example, a boy - you don't say child with the gender/sex (that's a whole different discussion) boy.
As an autistic, I define myself as such, but I also define myself as so much more. It's not the only thing about me, which Ms McCarthy so condescendingly suggested it would be with such a description. To me, it sounds more like she's the one who can't see "beyond the autism" and therefore have to say with autism to remind herself that her son is something more.
* It finally aired on Norwegian television last night (I don't watch Oprah, so I don't know if it has been on before), and I capped it for a few autistics and parents of autistics at an online board. Let me know if you haven't seen it yet and would like to.
Addendum: If you remove every label that sum up traits, etc, in one word, like autism -> with autism, aren't we basically removing every single part of us from our cores? If we stop using definitions like that and base our knowledge of ourselves thing we do and things we say instead of accepting them as parts of us?
The autism, however small it may be, is, and have always been a great part of my life (even when I didn't know about it). I can't just diminish that by calling it something else. Just as I am autistic, I'm a girl (at times), a woman (at times), I'm currently a student (not someone who only study) and a photographer and many, many other things.
Tuesday, February 26, 2008
In the real world
Tony Atwood has said that there is indeed a cure for autism. Simply put the autistic in a room, all on his own and close the door. The symptoms disappear when you do so.
This is very true for me. I say that I have no problem functioning in the real world, but it has to be on my terms. Put simply that means that I function reasonably/really well as long as I know what' going to happen and as long as I'm in my little routine of school (lecture, breaks, buying food in the canteen, etc), working at the paper (covering concerts, editorial meetings, conducting interviews), etc. Of course, all of the above have once been unknown and therefore settings where I haven't functioned as well as I do now, after I've rehearsed them and have suiting scripts to go with each of them. Hell, I even seems quite outgoing and socially competent!
So, what happens when I'm thrown into the real world where there are no scripts, no previous experience to work from? Luckily, I seldom have to find out.
Today was the first time I ventured to a auto-repair shop alone. My mom is away on business and took the opportunity to get service done on her car. She handed me an envelope of money and asked me to pick it up this afternoon. After years of driving and thus not using public transportation, I had to take a bus. Noisy, uncomfortable and stressful. Luckily, it was on time; I've got a thing for punctuality. I was also lucky enough to find a seat towards the back and the seat next to me was unoccupied for most of the trip. But still, the people and the noises and the way the bus moved was enough to set of some stimming and make me queasy.
Then I had to deal with talking to unknown people in a noisy garage/office. The smell of the motor oils didn't help my already upset stomach, and just being in there has made me smell. Had to grab a shower the minute I got home.
I've been thinking. Many people have smell-triggered migraines, I know I do. Many autistics also have heightened sensitivity to smells. Is there a connection between migraines and autism? Does anyone know?
This is very true for me. I say that I have no problem functioning in the real world, but it has to be on my terms. Put simply that means that I function reasonably/really well as long as I know what' going to happen and as long as I'm in my little routine of school (lecture, breaks, buying food in the canteen, etc), working at the paper (covering concerts, editorial meetings, conducting interviews), etc. Of course, all of the above have once been unknown and therefore settings where I haven't functioned as well as I do now, after I've rehearsed them and have suiting scripts to go with each of them. Hell, I even seems quite outgoing and socially competent!
So, what happens when I'm thrown into the real world where there are no scripts, no previous experience to work from? Luckily, I seldom have to find out.
Today was the first time I ventured to a auto-repair shop alone. My mom is away on business and took the opportunity to get service done on her car. She handed me an envelope of money and asked me to pick it up this afternoon. After years of driving and thus not using public transportation, I had to take a bus. Noisy, uncomfortable and stressful. Luckily, it was on time; I've got a thing for punctuality. I was also lucky enough to find a seat towards the back and the seat next to me was unoccupied for most of the trip. But still, the people and the noises and the way the bus moved was enough to set of some stimming and make me queasy.
Then I had to deal with talking to unknown people in a noisy garage/office. The smell of the motor oils didn't help my already upset stomach, and just being in there has made me smell. Had to grab a shower the minute I got home.
I've been thinking. Many people have smell-triggered migraines, I know I do. Many autistics also have heightened sensitivity to smells. Is there a connection between migraines and autism? Does anyone know?
Sunday, February 24, 2008
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!
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!
Friday, February 22, 2008
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?
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.
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.
Thursday, February 21, 2008
Presumptions, assumptions
Well, when you say how hard it is for you to talk to people, and to make friends, it's interesting that you're married and everything. Obviously it's great, too. But it's interesting.This comment was in my inbox a few days ago, from an entry I made in my LiveJournal with the letter I received from the psychologist a saw last week about Asperger's.
To be honest, I don't know how to make this entry. I don't know how to write an entry on how on earth I can be married. It is true that many autistic people do not marry. I'm not going to say that the majority of autistics won't marry because there seems to be more highh-functioning autistics than we know - more and more people, old and young, get a diagnosis.
So, on the topic of me and my marriage versus friends. I do have problems making, but even more so, keeping friends. The psychologist asked me about that - despite my urge to have a close friends, I seem unable to commit to a relationship on the same level as the people I make friends with. Either I'm yearning too much to be open and have girl-talks (you know, the kind you see in Hollywood movies) or I'm too withdrawn and insecure. Either way, I seem to scare people off. I am very very demanding. I demand that people treat me with the same kind of respect I show them - especially when it comes to giving and taking and showing up for appointments on time. As many, if not most autistics, I have a very deep-set black and white-thinking. I shouldn't blame the problems I have with making and keeping friends on my way of thinking and perceiving things, but it'd also be wrong to simply dismiss it. It is too set in my being to just shrug it off.
As much as I'd like a simple way to explain my marriage and the wonderfulness that is my husband, I don't think I can. Although he is most likely not autistic, we share some traits. Despite my urge to make social, I can also enjoy just spending time at home, in peace and quite (making social can drain me completely, resulting in low energy and migraines). He has always (as far as I know) been withdrawn. It's not that he can't have fun with friends, but most of the time he prefers to stay at home gaming and being a geek.
Other than that, he's the person I've been able to open up to the most in all of my life. He knows my ins and outs, my most shameful secrets and good qualities. And he has never judged me. Even when I make terrible mistakes, he's there to pick me up again.
Exactly why we got together, and have stayed together for five years, I don't know. Maybe I just met him at a time in my life where I was so desperate to fit in, have friends and live the perfect life. Maybe that desperation made me give it my all and make it work.
Marriage between NTs and autistics supposedly have an even bigger chance of not working out. Everyone says it's more work than "normal" marriages. Maybe it is. maybe it isn't. It's a bit too easy to say that autistics don't marry. That they can't have friends. It sounds more than just a bit like a cliché, but "we are just like you". We just work a bit differently.
Wednesday, February 20, 2008
There's no way to tell, but there are many of us
I met/saw/spent time with an Aspie for the first time in my life yesterday. Well, it's the first time I've known the person has Asperger's.
The girl who managed to "connect the dots" some time back has invited me to join her for scrapping. I'm still a newbie - only started 3 weeks ago, but enjoying it so far. Only drawback is that I sometimes feel like she's my social worker or something. Hope I'm not too clingy and that she doesn't see me as a burden. Either way, she invited me to come over yesterday and I accepted. Had to pop back home to get my stuff, and as I did so, she texted me and asked if I wanted to join them (she and her fiancé), but without specifying who "them" were - I just concluded it would be the two of them.
After I messaged her on FaceBook with my "confession" she mentioned that her fiancé's brother has AS. I know that he has two brothers, but didn't know which one it was. When I got there, his younger brother was visiting and there was no need to tell me that he's the one. I'm not sure how old he is, but he looked like he'd be 13-14 or so. Quiet, kinda withdrawn and very focused on his video games. We had a pleasant enough time, and he came over once in a while as we scrapped as he got bored with the football match that was on TV.
So, where am I going with this? Nowhere for now. I just thought I'd tell. I'll be writing another entry (soon, I hope) about how you can't always tell if someone has AS (or any other condition), hence the title.
The girl who managed to "connect the dots" some time back has invited me to join her for scrapping. I'm still a newbie - only started 3 weeks ago, but enjoying it so far. Only drawback is that I sometimes feel like she's my social worker or something. Hope I'm not too clingy and that she doesn't see me as a burden. Either way, she invited me to come over yesterday and I accepted. Had to pop back home to get my stuff, and as I did so, she texted me and asked if I wanted to join them (she and her fiancé), but without specifying who "them" were - I just concluded it would be the two of them.
After I messaged her on FaceBook with my "confession" she mentioned that her fiancé's brother has AS. I know that he has two brothers, but didn't know which one it was. When I got there, his younger brother was visiting and there was no need to tell me that he's the one. I'm not sure how old he is, but he looked like he'd be 13-14 or so. Quiet, kinda withdrawn and very focused on his video games. We had a pleasant enough time, and he came over once in a while as we scrapped as he got bored with the football match that was on TV.
So, where am I going with this? Nowhere for now. I just thought I'd tell. I'll be writing another entry (soon, I hope) about how you can't always tell if someone has AS (or any other condition), hence the title.
Tuesday, February 19, 2008
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.
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.
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.
Monday, February 18, 2008
Welcome!
After contemplating this for a while, I finally took the leap of creating an open and uncensored, yet anonymous, blog about living with Asperger's Syndrome. I've been blogging about the syndrome and how it affects me, as well as the process I've been going through to in order to figure out it is indeed AS, at my normal blog.
However, because I have used that blog for many years and lots of people have been given the address, I thought it was good to start 'afresh' somewhere else where I can openly write about Asperger's Syndrome and how I experience it.
I will, over the next few days, backtrack my entries in my regular blog and publish some of them here to 'bring you up to speed' on the last few months.
However, because I have used that blog for many years and lots of people have been given the address, I thought it was good to start 'afresh' somewhere else where I can openly write about Asperger's Syndrome and how I experience it.
I will, over the next few days, backtrack my entries in my regular blog and publish some of them here to 'bring you up to speed' on the last few months.
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