Wednesday, January 28, 2009

The value of neuro-psychological testing

Just the other day, a middle aged fellow approached me and said, “I think I might have Asperger’s. Do you think there is any point to my getting tested, or am I too old?”

I looked at him as I pondered the true meaning of his question.

“You do look pretty old,” I said. “But I’ll bet you could still take a test. Maybe they even have a simplified version you could try.” I tried to look encouraging, but I’m not too good at stuff like that.

“That’s not what I meant,” he said with an annoyed tone. “I was wondering if getting tested would serve any purpose!”

Now that his meaning was clear I gave his new question a bit more thought. Why do people get tested for neurological differences like Asperger’s or autism?

Kids get tested when they don’t do what’s expected. For example, a tyke who doesn’t talk when grownups think he should gets tested. A kid who never looks at people gets tested. There is this presumption in our society that all kids should talk and look at people, and woe to the toddler who fails to comply.

Later on, kids who fail or struggle in school get tested. There’s another presumption in our society that all kids should pass school. So a kid that fails must have something wrong, and the school shrinks test until they find it.

At least, that’s what some parents hope. In today’s economic climate, schools may resist testing because they don’t have any money to provide the services suggested by the tests. But those battles are the subject of another story; another day.

It’s probably fair to say that most of the kid testing is initiated by observant grownups. But what if it’s not fair? It’s still true . . . and that’s how it comes to pass, 99% of the time. Kids do not start the process on their own. I have never once heard of a three-year-old saying, “Mommy, can you test me for neurological differences?” In fact, I think it would be nothing short of remarkable to hear a question like that from a kid, even in today’s enlightened times.

There are some who say, “There’s no such thing as normal!” To those people, every single kid has a diagnosis waiting to be found. I don’t know that I fully agree with that, but I do think knowledge is power, and the more you know about yourself, the better off you are.

So then the kids become adults, and the idea of grownups looking out for them goes away. If a kid escapes the test/diagnosis cycle through toddlerhood and his school years, he’s pretty much on his own. There is a societal presumption that all teens should pass high school, but there is no presumption that those same teens should pass work, once they are out of school.

If they don’t act right at work, they get fired. There’s no talk of testing and evaluation. There’s no plan for success. There’s just depression, anger, and a search for a new job.

Some adults solve their problems, and settle into adult life, career, mate acquisition, kid raising, the whole American Dream routine. Others lose their way, to one extent or another. I am a member of that latter group.

When everyone around me made friends, I was the loner. I was the one who never knew what to say, or how to act. People called me all sorts of names, none of which felt right. But they all had a corrosive effect on my psyche. Why couldn’t I fit in?

When you find yourself at loose ends as a grownup, on the street, and it appears that life is unraveling all around you, there is a natural tendency to ask . . . . what’s the matter with me?

For some people, that’s meant to be a rhetorical question. But for others, it’s very real. There truly is “something the matter.” How do you know which group you are in?

You get tested.

As I said earlier, knowledge is power and that statement is most particularly true with respect to self-awareness. In my case, the knowledge that I was a perfectly normal Aspergian male (and not a freak) changed my life. Actually, “change” is too mild a term. Understanding of Asperger’s, and what flowed from it, turned my old life right on its ear and set me on a new and brighter path that I’m still following today.

If you are an adult, and you have a significant neurological difference (Asperger’s and autism are the most common, but there are others) the insight you can get from testing may be the best thing to ever happen to you.

Have you always felt like you were different? Do you always seem to say and do things in a different way? Do you struggle with things others master instinctively? Do you have strange fixations or interests? Have you ever wondered why?

Maybe you are just nuts, but perhaps there’s a more useful explanation, like the one I received some years back. I didn’t learn about my own Asperger’s until I was 40, but the changes and growth I’ve experienced as a result of that insight are just beyond words. And the same thing could happen to you.

There is no downside to being tested. No matter what the test results show, you will know more about yourself, your mind, and how it works. It’s a tool to improve your life and make yourself more successful. And you don’t have to be scared – the testing doesn’t hurt much. There are no side effects.

You know you’re different. We’re all freaks inside. Get tested today. Keep your local mental health workers employed, and improve your life at the same time.

I wish I had my own testing organization, so you could send me money. But I don’t. I’m not even a mental health worker. I’m just a believer in the value of self-knowledge.

52 comments:

China said...

I agree. I finally decided, a couple of years ago, something had been wrong for a number of years and got evaluated and diagnosed with dysthymia. That did change my life. I now don't feel it's my personality and I have permission to learn now to be happy.

Michael said...

I'm a clinical social worker and have worked with dozens of adults who have found/figured out in adulthood that they have Asperger's or another non-verbal learning difference.

John, I wholeheartedly agree with you that knowledge is power and there's practically no downside to testing. The people I've worked with would often feel that they can't do anything right; they have no talents or strengths, but in my experience everyone with Aspergers is able to do some things BETTER because of it. A good tester will help uncover those assets, and offer hope that the person can put those assets to good use. A good neuropsychologist will help the person understand what the test results mean.

The problem is, not all testing psychologists know much (or anything) about Asperger's, so the person runs the risk of being misdiagnosed, which WILL happen--I see it all the time. A mis-diagnosis can be very damaging, so what I would say is that if someone suspects they have Asperger's they should consult someone who is experienced in screening for the diagnosis, and who can then give some helpful recommendations to the person.

There's a great guy in Vermont--Dean Mooney, PhD--Who not only is an expert at testing for Asperger's, he's the most upbeat, positive person when it comes to figuring out a person's strengths and assets. If all psychologist could be like him. . . .

Michelle O'Neil said...

If we lived in a utpoia where everyone could just "be" I would say to hell with testing.

But we live where people judge and make assumptions and it just seems so much easier to have an explanation that results from testing.

Aspergers = not a brat.

People are so much more compassionate when they have a label to work with. And my daughter is MOST DEFINITLY not a brat.

I think Michael makes a great point about accurate diagnosis though.

Kat said...

This post made me cry. I'm 48 and have felt "different" since I was in 5th grade. Prior to 5th I was a "brat" who ran the show and bossed folks around and got into trouble a lot for a girl. I was what they called a tomboy.

I, too, had mentally ill parents...my mom had ECT in the early 60's (if I remember it correctly...I know I was very young). My dad killed himself when I was 20. Needless to say, I have some emotional problems.

However, I knew it was more than emotional problems. I once mentioned to "one of the best" psychiatrsts in town that I thought I had ADD or autism or something along those lines. She totally ignored this idea of mine and treated me for depression.

Over the years I've also diagnosed myself with social phobia and avoidant personality disorder. I've wondered if I was schizoid, shizotypal, borderline, or a sociopath.

Once I thought I had it figured out, I read Dr. Amen's book "Change You Brain, Change Your Life". I HAD taked a severe blow to the head in 4th grade. I decided I had mild brain damage and THAT was what had made me so weird.

I ran across the term Asperger about a year ago. I thought, hum, maybe THIS is what is wrong with me. I wasn't sure until I read your book. I was afraid to be sure. I wanted to be sure, but I was afraid nobody...especially my mom...would believe me.

My mom distainfully told me I was nuts when I told her I thought I had brain damage. She was even worse when I told her I thought I had AS. You DO NOT have autism, she said.

Ok, mom. I don't have AS. I'm just the loser you always act like I am. I simply have poor character and a bad personality and will remain the disappointment of your life until the day I die.

My mom wouldn't believe it if 25 of the world's best docs diagnosed me with AS. She'd rather believe I'm a loser.

However, as soon as I can afford it, I want to be formally diagnosed. I WILL go to one of Dr. Amen's clinics and get a diagnosis....even if it's when I'm 60..for my own peace of mind.

When I read chapter 20 of your book...I KNEW. This is exactly how my brain works...my thought process. This is the way I think and communicate.

Add to that the fact that I am serious, don't smile much, am practical, factual, logical, read almost strictly non-fiction, obsess on things, always got along better with adults, like animals WAY, WAY better than people, find small talk a big waste of time and am bad at it, am socially clueless, have trouble picking the right smiley face icon to go with my post on forums, always had trouble making friends, etc and on and on.

It fits all except that I can be quite sympathetic, empathetic, compassionate and insightful. Sometimes I can tell when someone is in great emotional pain. I want to race over and hug them...even if they are a total stranger.

I know people don't hug strangers, so I don't. I don't know what to do though and I want to do something to make them feel better. I do nothing.

When people are sad...crying maybe..I don't know the right thing to do. I just die to help them feel better, but I can't. I don't know the right thing to do.

I pray that I have AS. I NEED to know that I'm not just a bad person. I've wondered if I should get a test at my age. I think now that I should...and I will as soon as I can afford it.

Sorry for the long comment. Thank you for this post.

Monica said...

Hmmmm ...

For those who feel that testing at mid-life is the way to go, I encourage you! But for me? I see no real benefit in doing so. I know what my strengths and weaknesses are - I am accepting of the life (albeit a bit off "normal") I've been given, and I move forward - trying new ways of coping and assimilating. Personally? I don't believe a diagnosis would change much of what I do now.

Catana said...

A wonderful post, and I'd like to add that there's no upper limit for finding out if your differences come from Asperger's. I discovered the subject in my late sixties and spent a couple of very intense years reading everything I could get my hands on and peering into my childhood for clues. Self-diagnosis requires honesty, an introspective nature, and self-awareness, and is a viable method for anyone who, for whatever reason, can't or doesn't want to undergo testing.

Kat said...

I'm a bit embarrassed about my long post yesterday. I think I sounded like a whining infant. Anyhow, I have diagnosed myself. There is little doubt about it.

Maybe I'm old, but I still would like the confirmation, or maybe it's validation, that a formal diagnosis would give me. At some point, I'll get one.

John B said...

Well, John, this was a delightful entry! You were obviously in a very playful mood when you wrote it.

It was entertaining, but also very insightful. Thanks for getting this important message out: it's never too late to learn more about who we are!

If you were inspired by John's article to get tested, and you live close to Houston, we'd be happy to help you through our diagnostic clinic.

Just email me for more info: jbarone@monarchschool.org

Cheers,

John

Ed student said...

Hi John,

Thank you for commenting on my blog on sunday!
I am a university student in Lethbridge taking an educational psychology class for students with special needs. Reading about your experiences has certainly given me new things to consider for when I do get my own classroom with students.
I would agree with you that recognizing people who appreciate your capabilities is a great attribute for anyone to have.
Again, I would like to say that I appreciate the comment that you left on my blog.

piglet said...

john, i love that last sentence "I’m just a believer in the value of self-knowledge."

i think many things could be improved in our world if this became standard practice rather than something people avoid like the plague.

Kanani said...

I often come across individuals who say they feel they are on the autistic spectrum, but refuse to go through a battery of tests. A lot of them also suffer from profound depression.

Perhaps it's the general stigma in regards to mental health that we have in our society (still!).

You're right. There's no downside to getting tested. If one does --not matter the age, they will find a lot of people who feel like them, can help them, and give them a new sense of wellness through the camaraderie found by stepping fully into this new world.

The great difficulty many have, however, is paying for testing. Yes, children may be tested in schools. But for adults, it may or may not be covered by insurance.

Oh...John...check your gmail.

Kanani said...

Excuse me John...I'm going to leave a few notes...

Kat --My sympathies are with you over the tragic loss of your father, and your difficult childhood. I think any time we can find out more about ourselves, we discover untapped potential. A diagnosis can be a relief for those who have felt they've lived their lives on the margins but didn't know why. It can give clarity, strength and help with self-acceptance.

Monica --Testing is a choice, no one is saying you have to do it! Those who opt for testing aren't necessarily looking for their boundaries, they're trying to open them up, find out new things about what makes themselves tick, and through the process --see new possibilities which can lead to a new sense of well being.

Alyzarin said...

I'm not officially diagnosed-- just self-diagnosed in my early 30s-- and it has made a big difference in my life.

For one thing, my marriage was a little rocky because my husband saw me as unemotional and uncaring. (Funny how the popular culture asks us to believe that all women are highly emotional and sentimental and all men are emotionally insensitive. We directly counter that stereotype!)

When I discovered AS and read more about it, I realized that I probably had it. I talked to my husband and he learned more about it and realized that a lot of our problems stem from misunderstanding each other.

Now he has a better idea of how to read my actions, and I have a slightly better idea of how to demonstrate that I care about him (and to explain what's going on when it might seem as if I don't). Our relationship is much better because we can both understand why I work the way I do.

Samwick said...

"settle into adult life, career, mate acquisition, kid raising, the whole American Dream routine. Others lose their way, to one extent or another. I am a member of that latter group."

Latter group? As in you lost your way? You seem to genuinely believe that, it's disgusting. You worked out there in the corporate world for years...have your own business now...a family. Newsflash: that's the American dream.

some people lose their way...and guess what? it doesn't mean they sit around with their family and friends whining and feeling a lot of self-pity. They lose their way...and it means being alone. Really alone, not pretend alone.It means being unable to sustain a job and having to deal poverty, depression, and so on.

grow up, chief. stop using this little poor-me act, it's offensive to people struggling with more serious issues.

you say there's no downside: not everyone gets to learn of their asperger's and resume their comfortable life, the way you did. some people (not all) learn of it and it's devastating. realizing that the struggles one has had...the social isolation, the job difficulties...those will continue to be a problem, throughout one's life. getting a diagnosis can hurt a lot, seriously impact one's sense of the future, what is possible.

Kanani said...

Samwick

I think for some people, the dx of asperger's IS devastating. I know it has been for my teen age son, who wants very much to be cool.

But I understand (though he's not there yet) that this is stuff that has to be worked through. And believe me, he has loads of help. Part of his reaction is the natural drama that all teens experience due to a heightened awareness of self.

So yes, I can agree with you to the extent that if someone finds out and doesn't have a support system --it could feel like the end of the world.

But it doesn't have to. And that's why those of us on the outside try very hard to be supportive to those with Asperger's.

But not finding out? Well, I think that has some real downsides too. Mainly the isolation and blaming yourself for all of it.

Samwick said...

"it could feel like the end of the world...But it doesn't have to"

i agree. i think it's accurate to say that self-knowledge is preferable. the diagnosis can hurt, feel like quite a blow, but it does set up the possibility of constructive change...change that otherwise would not have been possible, as there would have been no way of getting control over the issues. i just don't think it's inherently positive...it belittles the pain a lot of people go through to suggest that there is no downside. that's extremely naive.

The Hyperlexian Aspie said...

wow, amazing post! when i was 33 (3 years ago) a psychiatrist dxed me as having some kind of developmental disability, but my experience after that was something like kat's above.

the shrink focused on my depression and anxiety and wouldn't pursue a more refined and definite dx. so now i have half of a dx and no $$$ to see a autism specialist (it costs money to see a psychologist in canada).

i was always different, but what caused me to finally seek a dx was one of my employers who knew i was different. did you ever meet a teacher who didn't give eye contact and who hated socializing with peers? no, never? exactly - that was me, and i made quite the impression on my peers and bosses!

anyway, i'd love to read your book, but if it reads like a novel or seems at all story-like, it's unlikely i'll do so, because i only read science article and non-fiction books... but at least i found your blog, yay!

kyra said...

i agree with John B--you seemed to be in a playful mood when you wrote this!

i think self-knowledge is key. as is compassion and support. those last two offer perspective since self-knowledge is highly subjective.

Polly Kahl said...

Great post, John.
Samwich, you've been posting on here for many months now and don't seem to comment unless you have something critical or negative to say. You don't use your real name or have a link that identifies you, so it's kind of like you're a big bully who comes in here and throws snowballs with rocks in them and then runs out before anyone can see you. Seriously, why do you keep coming back? Are you a masochist? Just curious.

Kanani said...

Sam,
I think if we don't acknowledge the downside, we can't possibly prepare for it.
It's why I've been very careful about not posting photos of my son, not writing his name, not identifying where he goes to school and not talking about his many issues.

He's very much in a struggle for self-identification. And dx or not, I think everyone deserves to work this out with some self-reflection (and help as well).

Kanani said...

In regards to Sam...

I know that John is tossing around material that might go in his book. He must assume that anything he posts here will draw feedback.
Hence, there will and should be vigorous debate, which I think is appropriate given that John is very much sifting through ideas.
Letting him know where you disagree is completely valid. The approach of each person will be different, and perhaps the value of Sam is that he's not so willing to agree.

Samwick said...

"You don't use your real name or have a link that identifies you"

I understand the identity thing. But ultimately? It doesn't really matter. If my points are valid...they're valid. If they're not, tell me why i'm wrong. The issues are the only thing that really matters.

I could print my real name...with real links. Or...I could post a fake name that sounds real...with fake links that look real...and no one would really have a way of knowing the difference. The identity thing...I get it, anonymous people like me are annoying...but that's the internet. And I am trying to make serious points, so if you disagree, I'd be curious to hear why.

Polly Kahl said...

Sam, It's not your opinions that make me wonder why you keep coming back. It's that interspersed with them you sometimes make personal comments that go beyond expressing your opinion, such as, "grow up, chief. stop using this little poor-me act, it's offensive to people struggling with more serious issues." It often sounds to me, from your posts, that you don't like John or respect him very much. That's why I wonder why you keep coming back. Personally, if I don't like someone, I don't repeatedly agitate myself by continuing contact with them.

Samwick said...

"Personally, if I don't like someone, I don't repeatedly agitate myself by continuing contact with them."

You and I just react differently to the world, then. I actively avoid people I agree with. People repeatedly saying things I agree with; it gives me cabin fever of the intellect. I seek out different opinions; even when I consistently disagree with them. Especially when I consistently disagree with them.

I think you're trying to make a distinction between my points and my tone, which is fine. It's just not a distinction I make. "grow up, chief. stop using this little poor-me act", for example. You don't like this sentence. But I see that going on; it's as valid to point out as anything else.

We react differently.

Kanani said...

"grow up, chief. stop using this little poor-me act"

Or he could have said, "Dude, you're top dog. What's with this Orphan Annie act?"

Or "Hey Homie, Wassup? You pullin' this whose my daddy routine?"

Or...Yo, car man. You're acting like you got stuck with yugo instead of a Jaguar.

John Elder Robison said...

Samwick, there is no request for sympathy in this post, nor is there anything I believe to be a "poor me" expression. My statement that I lost my way, to some extent, is just what I said. It's a statement of how I feel. It's not a request for sympathy or indeed anything at all from you or anyone else.

I say that to point out that I, like many seeming successful people, nonetheless have these lost or misfit feelings.

And insight into the reasons one may feel that way are, in my opnion, valuable.

As you rightly point out, "losing one's way" can mean very different things, depending upon where one is in life. But I suggest that it feels essentially the same.

Samwick said...

"I say that to point out that I, like many seeming successful people, nonetheless have these lost or misfit feelings."

No doubt. But how are people in bad situations supposed to react to those feelings?

Let's say there's a wealthy politician. He's successful, rich, has a family. But he feels empty inside, depressed.

Does his pain feel very real to him? I'm sure it does.

But let's say this rich guy walks up to a homeless man and says, "Just so you know, we rich people have it hard to. My pain is as real as yours".

How do you think that homeless guy is going to react? He's probably not going to feel a huge amount of sympathy.

Does it make the rich guys pain less genuine? No. But is the homeless guy going to think, "Wow, it's like we're on the same page."

Of course not. There are qualitative differences in their situations.

It's one of the worst parts of human nature: people who have it good never know it. Privilege breeds a mindset where it's almost impossible to appreciate what you have.

So in case you didn't know, there are many, many adult with AS who work terrible jobs, if they're able to work at all. They've been unable to sustain relationships; they're isolated, alone, struggling.

They're maybe not in the mood to hear someone who has it all complain about their "feelings".

One other point: if you have a family, a job, and you still feel sad; don't put that on AS. You have connections. Enjoy them. If you can't, find out what the problem is. Depression, low self-esteem, something; don't put everything on Asperger's, that's totally irresponsible.

I say that because: people read your blog, books, interviews. You have a responsibility to present things in a careful manner. And putting all of your problems on AS just isn't right.

John Elder Robison said...

amwick, you say, "It's one of the worst parts of human nature: people who have it good never know it. Privilege breeds a mindset where it's almost impossible to appreciate what you have."

It's probably more correct to say that "having it good" does not provide any protection from feelings of insecurity, anxiety, depression, etc.

You keep coming back to "blame" and complaint and that was not my objective at all.

I am aware that people struggle at all levels. I see peoplke around me who can't keep relationships or hold down jobs. I am well aware that the differences between us are very subtle, yet the effect those differences have upon us in society seems great.

I am aware that I have a responsibility to present things carefully, and I try my best to do that.

TerryW said...

Samwick said "So in case you didn't know, there are many, many adult with AS who work terrible jobs, if they're able to work at all. They've been unable to sustain relationships; they're isolated, alone, struggling."

My daughter would be one of them if she were out on her own. At 22 she lives with me, her single mother, because there's no way she could deal with living on her own and Samwick's observation would describe her life if she were. And it's not just sustaining relationships - it's sustaining friendships as well.

Over the years through various evaluations, none have really hit the nail on the head but everything I've read suggests Asperger's. She was evaluated through the State as "Avoidance Personality Disorder" which is wrong but was enough to qualify her for Social Security benefits. She is anything but avoidant. She craves friendship more than anything but unfortunately her friends from her younger years grew up, and she didn't. She can't communicate with her peers long term. Her best friends are me, her grandfather, and her two little dogs. Those little dogs are the best thing in the world for her, they provide love, friendship, responsibility, companionship, activities (dog park) - she is like the mother of two toddlers.

Her grandfather and I had her evaluated at an institute last June, diagnosis was ADD/ADHD/learning disability/possible Asperger's.

My daughter doesn't drive, is afraid to even though she was able to get her learner's permit, she isn't really capable of the coordination it takes for driving and she knows it without saying so. It would be a tragic mistake for her to drive at this time in her life, maybe it won't always be. She also gets lost very easily, confused on direction. She can get lost in Walmart and fears that happening.

So the only way she gets out of the house are when she goes places with me. Or when she's visiting her grandfather - who is very social and outgoing.

It's very sad and I wish her to have a life of her own with good friends to talk to and go do things with. I found this site and blog by searching for Asperger's support groups, hoping I could find something in my area where she could meet people like herself and develop friendships. But I live in a small town and so far haven't found anything and I'm thinking I'm going to have to start one.

Anyway, thanks for reading. There are obviously higher functioning Aspie's than others.

Kanani said...

TerryW,
I think you so aptly describe the social isolation coupled with a real desire to live a larger life.

When I had dinner with John in L.A., he pointed out that many Aspergerian's very MUCH want friends. While this might seem so basic to people like me, it must seem like a difficult puzzle to many with Asperger's.

They're bright, but often because of bad results in the past, a sense of failure or fear takes over --sometimes with awful and unintended results.

My best to you and her. May both you of find the long term support and friendships you will both need.

TerryW said...

Thank you for your kind words Kanani, yes my daughter wants lots of friends but she's mentally not on the same level as her age group, she's still very child-like in so many ways (even her voice) and that's what trips her up with friends who are now adult-like. They became too busy to do anything with her anymore. Breaks my heart as much as hers. My daughter has a great sense of humor and laughs all the time and is as cheerful as they come, and she tries hard to fit in, too hard sometimes, but it doesn't happen. It's not fair.

Surely there must be other Aspies in this town, we need to find them and start a social group.

Thanks again!
Terry

Polly Kahl said...

Terry, your daughter sounds like a real sweetie, and you and her are blessed to have each other. It's a good thing she has a mom who loves her as she is instead of trying to mold her into something she isn't and may not be able to be. Try your county's mental health association. They might know of a support group in your area. Best wishes to you!

Stewart said...

I actually never had official testing but it was suggested along with John's book from a professional.

Since then I listen to book several time plus other research and been trying to resolved issues.

One thing that might happen if tested now, my test might not indicated it because of my changes in myself.

This is important to me - so if testing is recommended - I will do it but it must be done by someone that understands it and fact that I am completely aware of it now.

I hope one day help others with my gain knowledge and hope one day to be success story - even at older age of 47 as I am now.

Stewart

Polly Kahl said...

There actually is no "test." You either fit the diagnostic criteria or not. If you fit, that's your diagnosis, and if not, then it's not. The most commonly used diagnostic tool is the DSM, currently in its fourth edition. Some fields also use Gillberg's. It can be helpful to be diagnosed by a professional because they can sometimes see clients more objectivey than the clients can see themselves, but you can easily diagnose yourself using the following diagnostic criteria. http://www.aspergers.com/aspcrit.htm

Alyzarin said...

TerryW-- Too bad you live in a small town, so not being able to drive is such an obstacle for your daughter. I'm completely unable to drive for the same reasons that you describe, but there are a lot more alternative means of transportation in most cities. (I live in one.) Too bad so many areas rely so heavily on cars for transportation. It's not just bad for the environment, but bad for people with disabilities too.

Diane Howe said...

Hi John,
I just want to thank you for taking the time to reply to my blog. As a student teacher, I feel it is very important to educate myself before I stand in front of a classroom of students who expect me to understand them when I can not personally relate to the various disorders they may be struggling with. Thank you for sharing your story, and also for encouraging people to get tested, regardless of what disorder they may be struggling with. It is results like that which will be so beneficial for teachers to really be able to provide the instruction based on the individual student's strengths and needs. I appreciate your openess and honesty.

TheresaC said...
This comment has been removed by the author.
kuri said...

I think I kind of get what Samwick is driving at. I'm 47, self-diagnosed as Aspergian in the last few years. I fit the DSM-IV criteria pretty well and score in the typical Aspergian range on tests available online. I have some problems with social situations, making and keeping friends, communication, and so on.

OTOH, I have no language difficulties that I'm aware of -- no problems with abstract concepts, non-literal expressions, or humor, for example -- and probably less difficulty with understanding emotions than most Aspergians. I think I understand emotions and relationships pretty well on an abstract or generalized level. (Although I have great difficulty in applying that knowledge in daily life, especially "on the fly." I need time to think hard about things that neurotypicals do instinctively.)

But I have a spouse and children who I get along with well enough. I've worked with mild success in corporate environments in the past. I've now developed a career as a freelance translator, allowing me to work online and play up my strengths while downplaying my weaknesses. IOW, I'm doing fine, despite difficulties in certain areas.

So I actually hesitate to call myself "autistic." Not because I think the label is stigmatizing, but because most people with autism have things so much harder than I do. I see similarities between them and me, I identify with them, I understand them, but am I one of them? I'm not sure. Their difficulties are so much more profound than mine, things are so much tougher for them than for me, do I really have a right to call myself one of them? Again, I don't know.

So maybe that's the kind of thing Samwick's getting at? That there are a lot of people who have it a lot worse than people like me, or like John, or like Temple Grandin, and he doesn't want John to forget that? (For the record, I don't think John does forget that. I just think maybe that's what Samwick is driving at.)

kuri said...

On the question of whether diagnosis has a downside, as an adult, for me it's been liberating. I've finally understood that there's nothing wrong with me, I just have a different kind of brain from most people. I feel so free to be myself now.

OTOH, what would that diagnosis have meant to me as a teen? I'm not sure. I wanted to be one of the cool kids, though of course I never was. Being given a diagnosis that in effect says "You'll never be one of the cool kids" would have hurt badly.

But wanting to be a cool kid and failing hurt badly too. If I had known it was impossible, maybe I would have started accepting my nerdy self and been much happier than I was wishing I was something I was not.

So if I could go back in time knowing what I know now and tell my teenage self that he has Asperger's, would I? Yeah, without a doubt. It would have hurt, but it would have saved me a lot of pain too.

Samwick said...
This comment has been removed by the author.
Samwick said...

"maybe that's the kind of thing Samwick's getting at?"

That's essentially it. But I don't think he's merely "forgotten". I don't think he has an understanding of what it's like for others. That's what was so striking to me about this post. He said there is no "downside", and that is seriously misguided. People new to this are going to read that, particularly therapists, and think "Great. I can expect clients to react well, then". Misunderstandings like this can be dangerous.

The truth us that, yes...some adults find out and it's a relief. Other adults...those who haven't fared as well, can feel very depressed, upset when finding out. And teens can react very negatively...since, as you indicate...that is a time when their identity is forming. They may feel very bitter about a label that relates to a neurological issue.

The diagnosis...when it is received...how it is received...is a big deal, with a number of complicated reactions possible. The way Robison phrased it as an absolute: "There is no downside to be tested"...was kind of shocking. He clearly has a narrow view of how people are reacting.

kuri said...

Well, I don't know if that's fair to John. His book and this blog are autobiographical, so naturally they concentrate on his own issues. He's not a textbook writer or a professor, he's just a guy telling his personal story and trying to offer insights that can help other people too.

He probably shouldn't have said "no downside," since there can be a downside for some people. He missed that. But nobody's completely right all the time.

That's one of the great things about this blog and these comments. I think I would have missed the downsides as well, if not for your and Kanani's comments.

John Elder Robison said...

Samwick, you have really raised some very important points. I can see that my thoughts were not fully formulated or communicated in the original post and you have certainly pointed out some real and significant issues.

Rather that discuss them in the comments I will make that the subject of a follow on post.

John Elder Robison said...

I've just posted a new blog expanding on the thoughts in this comment thread. I hope you'll continue this discussion on today's post.

Kanani said...

Polly said: "There actually is no "test."

Zing and a wrong!
With all due respect, when I went to the UCLA Autism Center for my son, there most certainly was a series of exhaustive psychological profile questions --both written and in person. They not only asked questions that pertained to him, they surveyed his teachers, they took background information on mine and my husband's backgrounds as well. In addition, they observed him physically. The did various tasks with him, they talked with him at length.

So I don't want people to think that "there is no test." There most certainly are protocols, and to dismiss the efforts of some very fine health professionals would be faulty.

Kanani said...

Quite frankly, what I find annoying is the paternalism showed toward John.
I never saw Samwick's or even my dissent from some of his ideas in the past as disrespectful.
I know from experience that when you're writing a book or an article and you take it into a group --often times there will be vigorous debate.

And it's no secret. John IS writing a book. I see this blog as a great place for him to use it as a sandbox in which to place his ideas and for the public to respond.

John Elder Robison said...

I do appreciate all your comments. Samwick does provide a valuable point of view, even though he's not shy in his criticism of me.

And just so you know . . . not everything that appears here is destined for a book. In fact, I'd guess no more than 10-20% is potential book material.

It's the discussion and the ideas that flow from it that's valuable, all around

Gator said...

For me, this blog put in words the way I feel and have felt about my son receiving a diagnosis. He's always been different and had difficulties, but it was never suggested to us that he might have a diagnosis. It wasn't until he was 8 and at a new school that any suggested anything. While the thought of testing for 'something' was a bit daunting at first, it was really only for about a split-second that I felt that way. In filling out all the questionnaires and surveys, I found myself hoping that he 'had' something that would explain his behaviors. The only reason I felt that way was that we were at a loss as to how to help him. He wasn't responding to anything that we (his parents) or the school were trying. When the testing came back confirming that he has Asperger's, I was relieved. It gave us an entire new direction in which to go to help him. Now, in situations that require it of me, I tend to not focus on the negatives and only on what is positive and helpful. That's not to say I haven't had my moments where the feelings of 'doom and gloom' crop up and I think of the negatives, but I honestly feel if I let that take over my outlook, my son is going to suffer. The way we are approaching things is much the way we approach things with our nt daughter, we are not going to get caught up in the negatives and maybes and we WILL do everything we can to help our kids be successful. My son is now 10 1/2 and for him, the progress he has made is not enough. He has many moments where he says out loud that he wishes he didn't 'have Asperger's'... And I know that he'll always feel that to some extent, but I feel its my job to keep pointing him in the right direction and showing him the light, so to speak. Only time will tell where he falls in the AS mix, but if I don't remain positive, how can he?

Polly Kahl said...

Points well taken, Kanani. It would've been better if I'd said that the diagnositci criteria is available to anyone, and there is additional testing as well. Personally I think the diagnostic criteria is great but additional testing is even better.

About the paternalism toward John, I don't think anyone needs to take care of him or defend him. He can take care of himself. I do think Samwich would appear more credible if s/he would state who they are and what their experiences or qualifications with AS are, instead of just showing up once ion a while to post an argumentative comment. In this case it's turned into some productive discussion, but that isn't always the case.

Kanani said...

Hey Polly,
I'm fine with Samwick's anonymity. Not everyone wants to come out, and I just think of him as Samwick. He doesn't have to state his credentials or whether or not he has a relative with Asperger's or if he/she is one him or herself. Samwick is just Samwick, no need for him/her to be anything else.

All this "stuff" gets kicked around by John and the rest of us to think about.

John, what I was saying is that in the process of writing, it's possible that you throw out ideas as a means to come to a conclusive way on how to modify your views and present them.

But thanks for giving everyone something to think about and respond to.

Samwick said...

"I do think Samwich would appear more credible"

I have zero interest in seeking the approval of strangers. If the anonymity bothers you, that's completely fine. Understandable. But you have two options: you can either address the issues being discussed. Or, you can pretend that my anonymity is a barrier to the discussion.

My sense: I'm either making valid points or I'm not. If you disagree, say why. That's discussion. Focusing on side-issues: that's avoidance.

Samwick said...

You know, Polly Kahl, if you're wanting to know if I have Asperger's Syndrome, you could just ask directly.