What’s in a label? (take 2)

In my last posting, I wrote the following about the consolidation of Asperger’s Disorder and PDD-NOS into a single classification for Autism Spectrum Disorder:

My experience leads me to believe that many people don’t understand the concept of a spectrum unless they can clearly see the boundaries between the different layers of the spectrum.

This generated some interesting conversations that have helped me as I figure out what I think.

Of course, the problem I had with combining these separate diagnoses into a single one – that people would tend to see all autistics as “the same” – also exists with the more “specific” diagnoses. It’s just that now you’ve got several variations on the theme: all Asperger’s is the same, all PDD-NOS is the same, all Autism is the same.

Thinking about all this reminded me of the expression “If you’ve met one person with autism, you’ve met one person with autism.” We are making a lot of process in getting this message out, and identifying autism as a spectrum could help with this even more.

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Autistic or introverted? (Or both)?

My thoughts about introversion in my post Monday morning lunatics got me thinking about a possible relationship between introversion and Asperger’s Syndrome.  That, and a thread at Computerworld discussing Asperger’s in the field of Information Technology.

Not long after starting my first post-college job, I took the Myers-Briggs Type Indicator and discovered that I was introverted.  (INTP, to be exact.)  Discovered is probably too strong a word, though, since I already knew I was introverted, as described in this definition:

I like getting my energy from dealing with the ideas, pictures, memories, and reactions that are inside my head, in my inner world. I often prefer doing things alone or with one or two people I feel comfortable with. I take time to reflect so that I have a clear idea of what I’ll be doing when I decide to act. Ideas are almost solid things for me. Sometimes I like the idea of something better than the real thing.

The following statements generally apply to me:

  • I am seen as “reflective” or “reserved.”
  • I feel comfortable being alone and like things I can do on my own.
  • I prefer to know just a few people well.
  • I sometimes spend too much time reflecting and don’t move into action quickly enough.
  • I sometimes forget to check with the outside world to see if my ideas really fit the experience.

To someone not familiar with all the intricacies of an Asperger’s diagnosis, this looks a lot like Asperger’s.  But consider this definition:

Basically, an introvert is a person who is energized by being alone and whose energy is drained by being around other people.

Introverts are more concerned with the inner world of the mind. They enjoy thinking, exploring their thoughts and feelings. They often avoid social situations because being around people drains their energy. This is true even if they have good social skills. After being with people for any length of time, such as at a party, they need time alone to “recharge.”

When introverts want to be alone, it is not, by itself, a sign of depression. It means that they either need to regain their energy from being around people or that they simply want the time to be with their own thoughts. Being with people, even people they like and are comfortable with, can prevent them from their desire to be quietly introspective.

Being introspective, though, does not mean that an introvert never has conversations. However, those conversations are generally about ideas and concepts, not about what they consider the trivial matters of social small talk.

So my question is: Are introversion and Asperger’s related, or is the similarity of  the outward presentations of the two just a coincidence?  If they are related, is Asperger’s simply (I know nothing it simple) an extreme form of introversion?

Another way to look at it:  Are all people diagnosed with Asperger’s introverted, or are there some extroverted Aspies out there?

Autism awareness “elevator pitch” (reprint)

I’m reposting this article because I think it is doubly relevant today: 1) it is autism awareness month; and 2) this is as much an issue today as it was last year. Again, it was a post from Kristina Chew that prompted me to repost this. (Thanks Kristina!)

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In her recent post Autism Speaks Now, Kristina Chew contemplates the discrepancies between the types of autism research actually being conducted and the types of autism research that are covered in the media (my emphasis):

[A] study by Stanford University researchers published in the February Nature Reviews Neuroscience notes, brain and behavior research on autism accounts for 41 percent of research funding and published scientific papers and only 11 percent of newspaper stories in the United States, United Kingdom and Canada. In contrast, 13 percent of published research was on environmental causes of autism but 48 percent of the media coverage was on this topic: When it comes to reporting on autism, there is a serious gap between scientific research and the mass media; in the case of some reporting on thimerasol and autism, parents are pitted against scientists. Autism Speaks, with its access to the full power of the media, will be getting its message out.

Kristina goes on to ask how scientists (and, by extension, we) can overcome this issue (emphasis is again mine).

I would be curious as to how scientists might “frame” some “hot button” issues in autism: As the back-and-forth in the comments on a post about David Kirby and Autism Speaks, facts and research studies can be cited, but people’s beliefs are not so easily swayed. What are vaccines and chelation but “highly politicized topics” in autism circles? How might a scientist refute such theories and treatments by “strategically avoid[ing] emphasizing the technical details of science”; by translating technical knowledge with an eye to the fact that this alone does not “drive decision-making or change minds”? It needs to be recognized that, when it comes to understanding autism, parents do not rely on facts and evidence and science alone; that emotions—however much acknowledged, or not—play a huge role.

We have to remember, too, that last sentence applies not only to parents but to the media who would reach those parents. And also to the people who are trying to get these parents to give money to pursue a cause.

To reach these people, you need to be able to get your message across quickly, to the point, and convincingly. While it may be possible to get the point across convincingly using the scientific data as a basis, this will not likely be either quick or to the point.

What we need is an “autism awareness elevator pitch.” Imagine you find yourself on the elevator with Oprah’s producer (to follow the thread started by Kristina), and you have until you get to the top floor to explain why Oprah should dedicate an hour to your view of autism. Here’s the quick sound byte that probably helped get Autism Speaks onto Oprah:

This is the national health crisis of our time……..This is bigger than AIDS. This is bigger than breast cancer, and almost no attention seems to be paid to it.

There a lot of ways to approach this (scientist, parent, autistic), I want to hear them all.

So…, what’s your pitch?

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What is autism?

I’ve been thinking about this question in the wake of the Polling case at the Vaccine Court, especially with all the discussion around the term “autism-like symptoms”. In his post Reports of the debate’s death were greatly exaggerated, Wade Rankin echoes my initial thought that autism is, by its very definition, nothing more than a collection of “autism-like symptoms.” But is that really true?

And if it is, is there really something – one thing – that is “autism”? Or are there a lot of “autisms”?

As I hinted at a couple of days ago, I lean toward the latter. And I can’t help thinking that each of these autisms needs to be considered independently of the others. What may help in one group of cases – say ABA – may be catastrophic in other groups. A change in diet for one group may actually work, even if it can’t be repeated in another group. (I’m not even going to touch chelation, because I don’t believe that has any merit at all as a treatment for autism, along with any number of other snake oils.)

A much better discussion of this idea, especially what it means in terms of how autism(s) is (are) treated, can be found in Harold Doherty’s post Alex Plank with Aspergers Does Not Want To Be Cured But He Does Not Speak for My Son with Autistic Disorder. It reminds us that just as we want the world to remember that all autistic people are not the same, we need to remember that the needs and wants of all autistic people are not the same.

No single individual speaks for, or should pretend to speak for, all autistics.

What autism is not

This is the second of four posts I originally published at LB/RB. I have included the text of the original comments at the end of the main body of the post.

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As I mentioned in my last post, I am currently reading Steven Pinker‘s latest, The Stuff of Thought, an interesting (so far) exploration of the role language plays in human nature. In preparing to make an argument at one point, he starts off by saying the following:

To truly understand what something is you must understand what it is not. (His emphasis.)

This, of course, got me thinking about what autism is not. (It seems I can’t read a book, or what a movie or TV show without finding some sort of connection to my thoughts about autism!) Here’s a quick list, I”m sure I’ll come up with more:

What autism is not:

  • Devastation
  • Train Wreck
  • End of the world
  • Caused by mercury poisoning
  • Purely environmental
  • Purely genetic
  • Caused by MMR (or any vaccine)
  • A curse
  • Punishment from God (whichever one may be yours)
  • A disease that can be cured
  • Easy to live with
  • Easy to explain to friends and family
  • Easy to explain to siblings of autistic child
  • Easy to explain to the autistic child
  • A reason to kill your child

I know there are more, many more, but this is what comes to mind tonight as I head off to bed. What do you think autism is not? (And please, if you disagree with one I’ve put here let me know.)

—– — — – –

Original comments:

1.

Tired and want to go to bed |

autism is not

…a reason to experiment on your child.

…a reason to reject all authority

…a reason to blanketly accept some alternative authority

Sep 25, 5:46 AM — [ Edit | Delete | Unapprove | Approve | Spam
2.

666sigma |

That’s a pretty good list except you have no proof (one way or the other) regarding vaccines. If you do, pass it along.

Sep 25, 12:05 PM — [ Edit | Delete | Unapprove | Approve | Spam
3.

notmercury |

666stigma: “That’s a pretty good list except you have no proof (one way or the other) regarding vaccines.”

What sort of proof do you require?

Sep 25, 3:13 PM — [ Edit | Delete | Unapprove | Approve | Spam
4.

jon Mitchell |

as an autistic person i must disagree that autism is not a curse or a devestation. It has made my life difficult. Are you autistic, brett? If not, how can you know it is not a curse or a devestation

Sep 25, 3:30 PM — [ Edit | Delete | Unapprove | Approve | Spam
5.

Steve D | onedadsopinion.blogspot.com

Jon – I don’t want to put words into Brett’s mouth, but I think he is saying that autism itself is not experienced in a profoundly negative way (ie. ‘curse’, ‘devasatation’) by all autistic people, and that the media’s careless overuse of these terms leads many people to only focus on its most negative aspects. This is counterproductive to a healthy view of autism by society.

Notice that Brett’s list also states that
Autism is not … ‘Easy to live with’. This is an acknowledgment, in my view, of the difficulties an autistic individual experiences as a result of their differences.

Sep 25, 4:12 PM — [ Edit | Delete | Unapprove | Approve | Spam
6.

Uncle dave |

Whoa! Good point Jon.
I guess like everything else, it was written from a parental or loved one perspective rather than as a personal perspective on being the one with Autism.

Why isn’t there more perspective broadcast from the person with autism’s perspective?
There are lots of very high functioning (forgive me) individuals with autism out there that can more than adequately represent thier perspective as Jon has.
Clinical and diagnostic discussions are one thing , but I have only seen one nationally televised journalistic piece on autism from the afflicted persons perspective. TV piece was about a white female who looked to be about early 20’s appeared to be living on her own (probably assisted care of some sort), who communicated through text on the computer (could type like there is no tomorrow). Obvioulsy very high functioning, but once again, affected in a manner that greatly influenced her ability to communicate in a typical auditory and expressive manner. She discussed her perspective on communications, stimulas and how she viewed other people and world around her.
Very interesting…

Sep 25, 4:27 PM — [ Edit | Delete | Unapprove | Approve | Spam
7.

bullet |

Autism is not:

An excuse to pathologise every single little difference whilst at the same time denying help when people really need it.
The entire basis of a person.
Something that is wholly negative.
Something that is wholly positive.
Something that ensures everybody on the spectrum will behave in the same way, or that the way they behave is governed by their perceived functioning levels in various areas.

Sep 25, 4:55 PM — [ Edit | Delete | Unapprove | Approve | Spam
8.

np |

Most physicians will give you their OPINION and pose it as science.

Sep 25, 5:18 PM — [ Edit | Delete | Unapprove | Approve | Spam
9.

Joseph | joseph449008@hotmail.com | autismnaturalvariation.blogspot.com | IP: 190.10.205.17

That’s a pretty good list except you have no proof (one way or the other) regarding vaccines. If you do, pass it along.

Would a phone survey that found autism to be more common among unvaccinated children than vaccinated ones be good enough? How about one that found unvaccinated girls to have a rate of autism 15 times higher than that found in prior phone surveys?

Sep 25, 5:50 PM — [ Edit | Delete | Unapprove | Approve | Spam
10.

Brett |

Jon,

You make some valid points, and no, I am not autistic but a parent of an autistic son. Uncle dave is correct that this was written primarily from a parent’s perspective.

I would be interested to hear from you, and other autistics, what you think autism is not.

Sep 25, 11:45 PM — [ Edit | Delete | Unapprove | Approve | Spam
11.

jon Mitchell | jonathans-stories.com
okay i will oblige:

Autism is not a different way of being or alternative life-style, a different culture, autism is not something to take joy in and be celebrated. It is not something that society can magically accommodate and just make it “all right”.

Sep 25, 11:56 PM — [ Edit | Delete | Unapprove | Approve | Spam
12.

Kev |

Autism is not ‘just’ one thing or another. I think Jon is right and I think Brett’s list is right too.

Uncle dave – if you head to The Autism Hub you will find several blogs that are run by autistic people.

Sep 26, 7:06 AM — [ Edit | Delete | Unapprove | Approve | Spam
13.

tracy |

please help i have 3 year old autistic son and all this confuses me on how to help him

Sep 26, 3:38 PM — [ Edit | Delete | Unapprove | Approve | Spam
14.

Joseph | autismnaturalvariation.blogspot.com
Autism is not something that, if it were possible to take it away, would make everything “all right”. Hi Jon :)

tracy: You’ll get a lot of advise from a lot of people, some valid, some that can only be described as total claptrap. From my research, the most important advise I can give you is to never, ever, under any circumstances, place your child in an institution or a group home. This in itself won’t guarantee a good outcome, but it will at least make a good or fair outcome possible if not likely.

Sep 26, 3:54 PM — [ Edit | Delete | Unapprove | Approve | Spam
15.

bullet |

Hello Tracey :). My son is four, so pretty close to your son. If you like I could say some of the things that we’ve been doing to help him. Would that be alright?

Sep 26, 5:07 PM — [ Edit | Delete | Unapprove | Approve | Spam
16.

Ettina | geocities.com/ettinashee
Life isn’t ‘all right’. (But what life is not is a whole other matter.)

> The entire basis of a person.

I’d agree and add that autism is also not a minor, pheripheral feature that is unimportant to who the person is.
In the book Lifting the While Veil, the author says that we are all individuals, we are all human, and in addition we belong to various categories defining varying degrees of our own identities.
Autism isn’t who I am, but who I am isn’t separate from autism. I am an autistic individual, as opposed to a neurotypical individual, etc.

Sep 27, 5:28 PM — [ Edit | Delete | Unapprove | Approve | Spam
17.

Ettina | geocities.com/ettinashee

My biggest advice for Tracey is – listen to your child. Even if he can’t talk, his behavior tells you things. Advice from others is only helpful inasmuch as it helps you better understand your child.

Sep 27, 5:30 PM — [ Edit | Delete | Unapprove | Approve | Spam
18.

bullet |

I’d agree and add that autism is also not a minor, pheripheral feature that is unimportant to who the person is.
“In the book Lifting the While Veil, the author says that we are all individuals, we are all human, and in addition we belong to various categories defining varying degrees of our own identities.
Autism isn’t who I am, but who I am isn’t separate from autism. I am an autistic individual, as opposed to a neurotypical individual, etc.”

I agree

Sep 27, 6:28 PM — [ Edit | Delete | Unapprove | Approve | Spam
19.

katia |

WHAT RIGHT DOES JENNY MCCARTHY HAVE TO GO AROUND AND SAY SHE HAS CURED HER SONS AUTISM
SHES SAYS IT HAS TO DO WITH DIET AND VACCINATIONS SHE’S NO DOCTOR …….

Sep 27, 11:32 PM — [ Edit | Delete | Unapprove | Approve | Spam
20.

666sigma |

Joseph,

The GR study had obvious bias, but to draw your conclusion, you have to mix apples with oranges. Within their study, it showed autism was higher among the vaccinated.

It would be interesting to see a real study comparing the rates of autism (and other LD’s) among the vaccinated and the unvaccinated. GR study is flawed, but probably no more so than most of the so called “scientific” studies.

The CDC will avoid doing a study like this at all costs so I won’t be holding my breath waiting for one.

Sep 28, 9:41 AM — [ Edit | Delete | Unapprove | Approve | Spam
21.

Kev |

“Within their study, it showed autism was higher among the vaccinated.”

What study was this?

Sep 28, 10:51 AM — [ Edit | Delete | Unapprove | Approve | Spam
22.

Kev |

Oh wait Siggy – did you mean the GR phone poll? You – the self professed statistician – consider that a study do you?

The one that showed amongst older kids (as GR specified)

Ages 11-17, all kids:
Aspergers (unvaccinated): 1%
Aspergers (full vaccinated): 2%

Thats a difference of 1%.

PDD-NOS (unvaccinated): 1%
PDD-NOS (full vaccinated): 1%

autism (unvaccinated): 2%
autism (full vaccinated): 2%

ASD (unvaccinated): 3%
ASD (full vaccinated): 3%

Could you maybe lend your statistical expertise to explaining the statistical difference between 1% and 1%? Many thanks genius.

Sep 28, 11:01 AM — [ Edit | Delete | Unapprove | Approve | Spam
23.

Joseph | autismnaturalvariation.blogspot.com

Within their study, it showed autism was higher among the vaccinated.

Sigma, you obviously are unfamiliar with the results of the GR survey.

Sep 28, 12:20 PM — [ Edit | Delete | Unapprove | Approve | Spam

More thoughts on ‘not-quite-Asperger’s Syndrome’ Syndrome

In my post ‘Not-quite-Asperger’s-Syndrome Syndrome‘ I intentionally kept the satirical/sarcastic tone of the original article, my only acknowledgment of the true nature of that article being an emoticon at the end and a ‘satire’ technorati tag. Most of the conversation I’ve seen on this article – some resulting from my original post – has been critical of the intent and execution of the article. I must admit, though, that I found it – if not humorous – entertaining and well-aimed. (For more discussion on the original article, check out How DARE They! What Do NTs Know Anyway?)

A recent episode of the TV show House, which Joseph also mentions in his response-post and which Autism Diva blogged, came to mind.

But my real thoughts were along the lines of, “Wow, now we know that autism awareness is increasing. If someone can make fun of autism and autistics in such a knowledgeable way, that means they are aware of the issues.” Or, as griffen quotes Gandhi

First they ignore you. Then they fight you. Then they laugh at you. Then you win.

I’m not sure this means that we ‘win,’ whatever that may mean in the context of autism awareness, but I see this as progress in our fight. As an individual, it is sometimes painful to be at the butt of a satire. But solid, well-informed satire is good for society. And this, I think, gets to the heart of some of the key issues surrounding autism (and disabilities in general), at least in my mind.

At what point do the needs/rights of society at large outweigh the needs/rights of individual members of that society? Or, maybe even more to the point, do the needs/rights of society ever outweigh the needs/rights of an individual?

No answers from me, at least not this year.

Happy New Year everyone, and keep up the good fight!

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Not-quite-Asperger’s-Syndrome Syndrome

I have my Google News page set up to show top stories in several categories, including Autism and Asperger’s Syndrome. Most of the stories are routine types of things, personal stories, communities trying to deal with autism, and the latest medical studies. One of the latter caught my eye today; how can you miss a story with a title like Study: Most Self-Diagnosed “Asperger’s” Patients Just Assholes?

The article addresses the recent phenomenon of people, mostly young adults, who are self-diagnosing Asperger’s as an explanation for their “peculiar and often abrasive personality.”

For years Soshul wondered what was wrong with her. Although her online life was rich and fulfilling, her “real life” inability to get along with coworkers or maintain a romantic relationship had become a source of deep frustration. At long last she was now armed with a medical term for her peculiar and often abrasive personality. For the first time since early childhood, she felt comfortable in her own skin.

Unfortunately, this recent study has found that these mostly 20-somethings may be jumping to a premature, and false, conclusion.

According to a new study in the current issue of The Lancet, however, Soshul and others may be completely off base. After rummaging through piles of data spanning years of clinical research, the study’s authors have concluded that a majority of these self-diagnosed Asperger’s patients are actually just intensely unlikable people.

They are, in short, assholes.

Needless to say, the study didn’t receive too warm of a reception from those it implicates.

Dr. Leon McCouch says that he and the rest of the research team fully understood that their work might be controversial but were completely surprised at the torrent of hatemail and online death threats that followed its publication.

“It was never our intent to insult or upset people,” said McCouch. “But as medical professionals, we would be remiss in our duty if we were to stand by and allow these people to incorrectly tie their boorish behavior to Asperger’s Syndrome. Then again, I suppose we should have anticipated this reaction. What else would you expect when you speak truth to a bunch of assholes?”

McCouch and his team are not implying that some of these people are not actually Aspie’s, and make it a point to show that what they are trying to do is get those who actually have Asperger’s to get a professional opinion on the matter.

McCouch went on to explain that his group’s intention is to encourage folks who feel they have Asperger’s to get tested for the disorder. For most of these people, however, the desire for an official diagnosis is grossly outweighed by the very real possibility that they will be told that they don’t have Asperger’s Syndrome.

As you may expect, this is not the end of the story. Dr. McCouch will be providing some more details on the question in future reports.

Under intense pressure, McCouch has agreed to write a follow-up to the article for the next issue declaring a new medical definition for the not-quite-Asperger’s-Syndrome Syndrome that appears to be spreading so quickly among America’s 20-somethings. The disorder, to be known as “Ass Burger’s Syndrome” should become official by February or March of next year.

I can hardly wait.

:-D

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