Tag Archives: aspie

introverts, ep. 2

22 Jan

Here’s episode 2 of The Power of Introverts, for those who may be interested. I find a striking similarity between the personality traits for introverts and those for many of us who are aspies.

 

self-esteem and autism survey

26 Feb

Hi there, folks.

I need people of all kinds to fill out my survey for my master’s research, but I especially need responses from those of you who have autism or Asperger’s. And I tend to get more responses from women. So help me out, men.

Please take a few moments to fill it out, and share it with your friends.

Thanks! I am eternally grateful!

more ASDay stuff

2 Nov

As you probably know if you read this blog, yesterday was the second annual Autistics Speaking Day. If you’d like to read my ASDay post it is located directly below this one. I am proud to have been a participant since the very beginning….last year.

There was a great showing this year, so click here if you want to see the list of participating blogs and click here to see the Autistics Speaking Day Blog with everybody’s entries re-posted on one site.

Can’t wait to do it again next year!

the particular cruelty of asperger syndrome

4 Oct

This entry is inspired by Bruce’s latest post about us aspies having to try and “pass” for normal in order to get along in the world. He talks about how this can be harmful and cause you to burnout if you’re constantly trying to fit in. It’s a very thoughtful post. It got me thinking about how much of ourselves we have to hide in order to be socially acceptable. Even people without disabilities do it.

I kind of have mixed feelings about it. When I was first diagnosed it was a relief, but I was also angry that I was still expected to try to act like everyone else in order to be acceptable. It seemed like it was quite okay for other people to be offensive to me, but I had to “fix’ the way I acted so as not to offend them. A lot of that anger has faded away now. I’ve accepted that it’s just one of the cold hard facts of life. If you want to play the social game you have to follow some of the rules.

I’m not saying that you shouldn’t be yourself. But I think that in order to be realistic we have to balance both being ourselves and being passable. It’s life. It’s what all of us do. Some of us are just better at it than others. Some of us just really have to work hard at learning the social rules. I’ll never get it perfect. I’ll always be autistic. All I can do is try my best to make other people comfortable around me. If they still don’t like me after that then I guess it’s their loss.

I spent a good 20 years of my life torturing myself over my inexplicably failed interactions with other people. This is the particular cruelty of Asperger Syndrome. You want people to like you but you know that there’s something not quite right about you. You want to live up to other people’s expectations yet you have no idea how to go about doing it. And the worst part is that nobody will tell what it is that you need to change. You’re left alone and floundering, wondering why it has to be so hard for you. Oftentimes depression and feeling of self-loathing set in. And the more depressed and anxious you get, the more uncomfortable other people are around you. At this point you have a decision to make. You can be miserable or you can fix what you can and accept the rest. I’m not saying that it’s easy. It’s a work in progress. Like I’ve said before: all we can do is try our best and be kind to ourselves.

aspie self-esteem

4 Sep

I’ve decided on the topic for my master’s research. I want to see if there’s a difference in self-esteem or positive self-regard between teenagers with high functioning autism or Asperger syndrome and their peers.

I’m not sure what my hypothesis is yet though, because there are two conceivable possibilities. The teens with autism have higher self-esteem because they care less about what others think of them and/or they are oblivious to it.  Or, it could be more likely that they have lower self-esteem because they are aware enough to know that they are different and make mistakes in social situations. I don’t know which of these is more likely. When I was a teen with Asperger syndrome I know I had low self-esteem, but that was just me. And then, of course, there’s the possibility that they have the same average level of self-esteem as other teenagers.  After all, being a teenager kind of sucks for everyone.

Anyway, it’s a relief to have a topic. Now I have to work on the specific problem question and then decide what kind of evaluation I will use to measure self-esteem. It should be interesting to see what kind of results I get.

april

9 Apr

I know it’s Autism Awareness Month, but it kind of feels like Autism Speaks Month.

That doesn’t sit right with me.

autistics speaking: it’s all about tolerance

1 Nov

lllustration by Kate Bizer

It was hard for me to figure out what I should write about for today, since I was trying to narrow it down a bit.  I decided I want to talk a little bit about what has been difficult for me and how important neurodiversity is.  I have been diagnosed with Asperger Syndrome, which means I am very high functioning.  Most people I meet never know I have autism, they might just think I’m a little weird.  I’m going to go out on a limb and say that I think sometimes it’s harder when you’re “less impaired.”  I don’t want to minimize the difficulties and hardships for families with severely autistic children.  But, when a person is clearly disabled people don’t expect them to act the same way as everyone else.  When your disability is more subtle people are expecting you to act like them, and when you don’t they think you’re being rude or stupid.  Neurodiversity is the idea that there is a natural variation in brain functioning in humans, and that there isn’t one type of brain structure that is better or normal.  People process the world in different ways, and that’s okay.

I’ve been lonely for a lot of my life.  I know enough about social interaction to know when I’m not doing it right but I don’t always know what to do to fix it.  It hurts when you want to have friends and you want to interact but you don’t know exactly what you’re doing wrong.  It is also common for people with autism to have anxiety disorders or depression, which can make social interaction even harder.  I floundered around for years feeling like an outcast and not knowing why things were so difficult for me.  I spent a lot of time feeling sorry for myself and even pushing people away to avoid getting hurt.  Since my diagnosis I’ve done a lot of work on myself and I’m much more aware of my actions and how other people see me, and I’m still working hard at it.  Getting diagnosed allowed me to know what I needed to work on and to know that I’m not an unlovable, bad person.

I guess what I want people to know is that we need to be more tolerant of everybody, not just people who are visibly disabled.  We don’t know what’s going on in other people’s lives.  We don’t know what all their motivations are or why they’re acting a certain way.  But, I think it’s our duty as compassionate human beings not to take things personally and try to accept people how they are.  I’m slowly getting better at this and working at it every day.

I think it’s also important to understand that different things are difficult for different people.  Just because something isn’t a big deal for you, it may be very hard for somebody else.  People with autism are often upset by different things than the average person.  My mom once said about me, as a child, “You weren’t upset more than other kids, just upset by different things.”  This can be difficult for people to understand.  In college I once stayed up all night, the entire night, worrying about a pair of pants.  It seems ridiculous, but the anxiety was very real at the time.  When we have meltdowns or anxiety attacks it can be impossible for us to control it at the time.  People with autism also don’t always notice when something is upsetting to someone else.  People sometimes think I’m being bitchy because I just say what I think, and I don’t edit myself much.  But I’m really trying to be socially acceptable, I just don’t always know when I’m sounding brusque.

And finally, I think it’s important to have open dialogue with other people and to speak up when you don’t understand something.  This would have helped me immensely at various times in my life.  I’ve had very difficult situations at a previous job because my actions were being misinterpreted by my co-workers and no one ever said anything to me.  Meanwhile, my boss was getting a lot of feedback about me and I was totally clueless.  The situation turned very uncomfortable and I felt hurt that my co-workers thought I wasn’t being a team player or wasn’t doing my job well.  I almost felt like I was being lied to because nobody ever told me that my behavior was making they annoyed or uncomfortable.  But miscommunication can happen between any two people, whether they are autistic or not.  It’s important to talk to people when there’s a problem and to be as open and understanding as possible.  Tolerance and acceptance is what’s needed most of all, for autistic people and for everyone.

autistics speaking – 2: i’m just kidding

30 Oct

I got a little distracted with work and school there.  But, now I’m avoiding doing my homework, so here’s my next post about communication, specifically humor.

People with autism often have trouble picking up on subtleties during conversation or the nonverbal cues.  We have trouble reading between the lines.  We tend to believe what people tell us verbally, even though tone or body language may be saying something totally different.

One of the complications of this is that people with autism can seem gullible.  Sometimes I feel stupid because I miss the joke.  I feel like I’m constantly saying, “Really?”  Sometimes people get irritated because I’m not picking up what they’re putting down.  Or, I feel uncomfortable in a situation because I can’t tell if someone is joking with me or making fun of me.  And, dating is just ridiculous.  It’s pretty much impossible to flirt when you don’t pick up on nonverbal cues.

With these communication difficulties it’s hard to make friends and maintain relationships.  Because we don’t do subtlety, people with autism are usually blunt and say exactly what we think.  This comes off as rude or even bizarre to others.  And what we find funny might not be funny to a lot of other people.  I think that the people I’m closest to are people who are genuine and who will be upfront with me, and who don’t mind it when I say what I think.  I find it ironic that people with autism often have trouble making friends because once you get past the curtness, autistic people can make great friends.  Most of us aren’t really capable of deceitfulness, so we’re honest and loyal.  Most of us care very much about other people and want to have relationships, we just don’t always go about it in the familiar or tactful way.  And, we can be really funny when you get to know us.

More about relationships later.  For now, it’s back to my homework.

 

autistics speaking – 6: ouchy ouchy burny burny

26 Oct

Today’s topic: sensory problems.

In this respect, I think I’m pretty lucky.  There are a lot of autistic people who have problems with textures, so they can’t wear certain clothes or eat certain foods.  I worked with a kid who refuses to eat anything unless it’s dry and crunchy, and another kid who only consumes liquids and purées.  I have a few texture issues when it comes to meat, but for the most part I’m fine.

I do, however, have problems with light, sound, and smells.  Mainly, I’m extra sensitive to all of these things.  I have to wear sunglasses outside pretty much all of the time, especially if I’m going to drive.  I have also been known to wear sunglasses inside if it’s too bright.  When it comes to smells, walking into a Bath & Body Works is like torture.  Again, it’s way too much input.  I usually don’t like it if people wear perfume or cologne, and I use unscented products when possible.

The sound issue is a little bit more than just being sensitive.  It’s like sensory overload if I’m in a place with a lot of background noise.  Many autistic people, me included, have trouble differentiating between noises and have a hard time focusing on just one, so talking to someone in a crowded room is really hard.  Some people have tried to explain the sensory overload by saying it’s like being in a room with ten televisions all turned to different stations with the volume all the way up, then trying to listen to someone talking to you.

Also, sometimes autistic people really enjoy unusual forms of sensory input.  Temple Grandin invented her own squeezing machine because deep pressure can be calming for us.  I find this to be true…which is why I think my wet suit is calming.  It kind of give a nice all-around pressure, like a big hug.  Also, as a kid I really liked to rub soft things on my face or lips, which I still do occasionally as well.

What?

I like fuzzy things.

autistics speaking – 7: what was i doing?

25 Oct

I’ve had an idea, and hopefully I won’t be too lazy and I’ll actually do it.  I figured I’d do a post every day until Autistics Speaking on November 1st.  I’ll try to address one aspect of living with autism in each post and hopefully it will be interesting and informative.

Today’s topic is executive functioning.

Executive functioning includes the cognitive processes involved with planning, problem solving, organizing, and multi-tasking.  People with ASD (autism spectrum disorder) usually have impaired executive functioning, at least to a some degree.  This impairment is what can make us seem absent-minded, distracted, or even clueless, sometimes.

For me this impairment manifests in a variety of ways.  I am horrible at multi-tasking.  I need to concentrate on one thing at a time or nothing is going to get done.  Then, if I get distracted it takes me a long time to get focused back on what I was doing and find where I left off, or I forget what I was doing altogether.

It can also be difficult to do things in the same way as everyone else.  I have encountered work situations where I was expected to do something in the exact same way as my co-workers and I couldn’t because I have my own way of organizing tasks and ideas.  Unfortunately for me, this became a problem.

My executive functioning difficulties have caused me quite a bit of distress at certain times in my life because my episodes of  no-common-sense can be extremely embarrassing.  Just last week I ran out of gas on the highway.  It makes me feel like a total idiot.  In fact, operating a motor vehicle can be difficult for a lot of aspies, especially because of the sheer amount of multi-tasking and attention it requires.  It’s like being bombarded with input.  I didn’t get my driver’s licence until I was 22, and I know other aspies that never get theirs.  It takes a lot of practice for us and it has taken me years to feel comfortable driving.  But, apparently the concept of refueling still escapes me occasionally.

But, there is a silver lining.  When your brain doesn’t make connections in the normal way sometimes you stumble upon an idea or a way of doing something that no one has thought of before.  Every once in a while it pays off.  But in the meantime, I’ll have to continue to leave myself notes and reminders and suffer the taunts from my parents for having to bring a gas can to me on the Milroy exit ramp.

speak up

24 Oct

I am proud to say that I will be participating in Autistics Speaking Day.  It is being organized by Kathryn Bjørnstad over on the Facebook.  It’s an event created in response to Communication Shutdown, which is an autism fundraiser based in Australia.

Those participating in the “Communication Shutdown” will not use social networking websites on November 1 and will download an app to those websites that promotes autism awareness.  Apparently, not using Facebook or Twitter for a day is supposed to show you what it’s like to be autistic, since autistic people have trouble communicating.  Don’t get me wrong, I support raising awareness and money for autism research.  Their hearts are in the right place.  But not using FB for a day so you can see what it’s like to be autistic?  Poppycock.

Autistic people are not silent.  My compatriots and I believe the day would be better used as a time for people with autism to speak up.  We will all be posting to our blogs on November 1 to raise awareness and maybe give people a better idea of what it’s like to live with autism.  So, I hope you’ll check it out!

1 in 110

29 Apr

First, watch this PSA from Autism Speaks, which strongly advocates for an autism cure.  This ad created a lot of outrage from those of us who don’t see autism as a terminal illness.

Thanks, Autism Speaks.  I didn’t realize that my existence caused my family nothing but pain, suffering, and embarrassment.  It’s “too late” for me.  I guess I’m responsible for my parents’ divorce too.

Now, watch this PSA from ASAN, the Autism Self-advocacy Network, from people who have autism.

Just because we’re different doesn’t mean we shouldn’t be accepted the way we are, and provided with the assistance to live our lives in our own way.  We need more focus on education, acceptance, and support for autistics and their families.  If they find a “cure” someday then people can decide what to do when that happens.  But right now, we need people to embrace neurodiversity because our wiring may be different but that doesn’t mean it’s wrong.

Supposedly one in 110 children have autism (I love how adults are never included in these statistics).  And according to Autism Speaks, one in 70 boys have autism.  Think about that.  It’s an immense number of people.  How can that many people be “sick”?  If these numbers are true then autism starts to sound less like a disease and more like part of the natural spectrum of human existence.

a cure may be sooner than we think

24 Apr

Research by scientists at The George Washington University School of Medicine suggests that the effects of autism my be reversible.  Basically, we have microRNA’s that regulate the expression of certain genes.  Scientists have found that microRNA profiles for brain function are differentially expressed in the autistic samples, showing differences in the expression of genes highly involved in neurological functions in addition to those involved in gastrointestinal diseases, circadian rhythm signaling, and hormone metabolism.  Since microRNA expression can be changed using complimentary “anti-sense” RNA, they think they may be able to engineer it to “fix” the gene expression that is abnormal in autistic people.  This article explains it a little better than I do.

This is interesting news.  It finally shows that may be a real connection between autism and  stomach and sleep problems.  It still doesn’t tell us why autism occurs, but it shows us where it occurs in the brain, which is very exciting.  It may also allow us to have a physiological test for autism instead of guesswork.  I would be very interested to see what the differences are between people with Asperger’s and people with classical autism.

There’s no doubt that if a therapy is developed from this research it could change the lives of severely disabled people.  There’s also no doubt that I find this research scientifically intriguing.  But, it brings up the same question I seem to go on about all the time.  Would curing a person’s autism also irrevocably change their personality?  What about the advantages of having AS like intense focus, unusual analytical skills, or eidetic memory?  Would those things be lost along with the unsavory symptoms?

I just don’t know.  But I do know that I like myself the way I am.

lights will guide you home and ignite your bones

12 Mar

It has been about a year since I was diagnosed with Asperger’s.  A lot has happened in that year, but I don’t feel like much has changed.

I mean, it has been helpful knowing about it.  At least now I don’t have to blame myself for all of my social issues.  But, that doesn’t change the fact that I still have to follow the social rules if I want to function well in society.  Just because you know why you have a problem doesn’t mean you know how to fix it.

I’m still confused.

I’m still alone.

I get indignant.  I get really offended by the idea that I need to be fixed.  Why do I have to do things the way other people think I should?  Why is my way the wrong way?  Why do I have to conform in order to be accepted?  It’s not fair.

Well, it isn’t fair – just like everything else in life.  I’m just going to have to deal with it.  The question is, how much of yourself can you change before you aren’t you anymore?

no more asperger’s

11 Feb

I’m cured.

Just kidding.  A panel from the American Psychiatric Association decided that Asperger’s Syndrome will no longer be a separate classification from autism.  All autistic disorders will be included in the broad classification of Autism Spectrum Disorder.  Of course, this is causing some controversy.  You can listen to NPR’s report here.

The proposed diagnostic criteria for Autism Spectrum Disorder in the new DSM-5 are as follows:

Must meet criteria 1, 2, and 3:

1.  Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a.  Marked deficits in nonverbal and verbal communication used for social interaction:

b.  Lack of social reciprocity;

c.  Failure to develop and maintain peer relationships appropriate to developmental level

2.  Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a.  Stereotyped motor or verbal behaviors, or unusual sensory behaviors

b.  Excessive adherence to routines and ritualized patterns of behavior

c.  Restricted, fixated interests

3.  Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Some people have issues with this conglomeration because of the huge differences in behavior between someone with very mild autism, like me, and someone at the other end of the spectrum who can’t care for themselves.  Some  aspies don’t want to be called “autistic.”  The problem is that these definitions have always been hazy.  We’re not sure how to define autism.  Most likely, it’s a grouping of several neurological disorders that have some similar symptoms, but we won’t know until we’ve got better diagnostic tools.

The fact is, the reclassification will help some people get services that they didn’t previously qualify for.  It doesn’t take away the “aspie culture” that has been established; it wasn’t meant to force people to change how they identify themselves.  I, for one, will still call myself an aspie.

Must meet criteria 1, 2, and 3:

1.  Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a.  Marked deficits in nonverbal and verbal communication used for social interaction:

b.  Lack of social reciprocity;

c.  Failure to develop and maintain peer relationships appropriate to developmental level

2.  Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a.  Stereotyped motor or verbal behaviors, or unusual sensory behaviors

b.  Excessive adherence to routines and ritualized patterns of behavior

c.  Restricted, fixated interests

3.  Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

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