Thursday, February 25, 2010

Aspergers versus Autism - The Great Label Debate (Part 3: The case AGAINST)

Last time I looked at and played "devil's advocate" to, the argument to absorb the Aspergers label into the wider Autism label.

In this post, I want to look at the case "against".

The Autism label is Tainted
This is by far the most "vocal" argument against the merge. There's certainly an element of truth to it. I don't think that anyone who really knows autism will try to suggest that the word isn't tainted.

Stop anyone on the street and ask them what "autism" is. You'll get instant recognition. They'll tell you about children who can't function without adult helpers and if adults are mentioned at all, they'll tend to be the "diapered" and "institutionalised" variety. Usually, people on the street don't even think about autistic adults. It's like the "problem" simply goes away.

If you try to suggest that there are adults on the spectrum who don't live in institutions, you'll receive a blank stare and then muttered assent; "oh yeah, like rain man."

Thanks hollywood, thanks autism speaks. You've managed to confuse the world so that an image of 5% of the least able members of the autistic community represents the entire community. The word is most certainly "tainted".

On the other hand, if you ask people about Aspergers, particularly if you don't say "syndrome", you get blank looks and mostly a lack of recognition. If anyone does recognize it, they'll usually respond with words like "quirky", "geek" or "nerd". Believe it or not, this is considered to be a positive stereotype and I suppose that, compared to the stigma of "autism", it probably is.

I read somewhere on a blog of someone claiming Aspergers as a "successful brand". I feel that treating our syndromes as brands is probably carrying recognition a bit too far but I'll leave that for the commenter's to dissect.

The question here isn't whether or not the word "autism" is tainted but rather whether the solution is to abandon it in favour of a new label which while not necessarily "tainted" is certainly beginning to associate with a particular stereotype.

I have two main thoughts on the tainted argument;

  1. Will we feel the need to abandon this new label in another 20 years when it too becomes "tainted"?

  2. Assuming that we "cream off" the diagnosed aspies, what happens to the remainder of the autism community? What about the high functioning autistics - are we simply going to abandon them even though there's almost no difference between "our diagnosis" and theirs.

The Elitist Attitude
This is the "against" camp's answer to the political correctness garbage of the "for" camp - and in my opinion, it's just as useless. In this case, it refers to a very vocal minority group who don't want to be in the same category as people with very severe autism.

It's similar to the "tainted" theory (at first glance, it seems the same) except that in this case the people aren't so concerned with the public predjudice as their own. They're not worried about what other people think. They're worried about what they think about themselves.

In this case, the whole argument is moot because it's clear that these people will continue to refer to themselves as "aspies" regardless of what DSM V says.

One last point on this argument. It's not just aspies. I've actually read some posts from the parents of children with severe autism where they're complaining about high functioning people "stealing" their funding and drowning out their pleas with "high-functioning babble". I'm not sure that such an attitude is warranted but it certainly harks back to one of my earlier points about making sure that all voices on the spectrum are heard - not just ours.

The Strain on Services (and Removal of Services)
The possibility of placing a strain on services is very real. Right now, in Australia, there is greater support for High Functioning Autism than there is for Aspergers even though they are considered to be "clinically identical" once early intervention has ironed out the speech delays.

The "strained services" argument suggests that if the same amount of money is spent on services for autism but the playing field is leveled in terms of requirements, then those who are currently receiving less funding will receive more. Of course, the money has to come from somewhere, so it makes sense to suggest that those who are receiving more funding now will receive less under the new scheme.

This is the crux of the problem. For the most part, people who are already receiving higher amounts of support generally require greater support. It's true that aspies need more support too but not as desperately as people with Kanner's autism.

Of all of the arguments in the "against" camp, this one is unique because it is not discriminating against the more severely handicapped autistic people but is actually supporting their right to greater services.

The other part of this argument suggests that many people who previously fitted under the banner of aspergers may find themselves no longer on the spectrum - and thus no longer eligible for support. This theory comes from the idea that the boundaries between neurotypicality and autism will be solidified and that some of the diagnostic criteria will be revised.

At this stage, I've seen no evidence to suggest that this is definitely the case but there are some interesting rumors. In any case, it's unlikely that anyone will have their existing "labels" taken off them (they'll just be migrated to the new wording) but it is much more likely that new people who would have received a diagnosis and support under the old system may find themselves "too high functioning" to qualify.

Confusing Changeover Period
The last argument I want to cover is the changeover period. It's another good argument. Not that long ago, one of the major Australian banks had a rebranding exercise. They kept their name but changed their logos, slogans, forms, website and general branch appearance. The whole thing was a massive undertaking which pointlessly squandered a huge amount of money. In the end, most people couldn't see how they could justify the expense.

I'm wondering exactly how much money this changeover will cost in terms of re-branding, retraining and redrafting the rules. I know that the majority of the money spent on this activity wouldn't have gone towards services anyway but I'm willing to bet that somewhere, somehow, service disruptions will eat into support funding.

Consider for example, your local community support services centers. These operate with very limited funds and will need to spend time, money and resources coming to grips with the changes in the DSM. Instead of spending money trying to improve their programs for support, the money will go towards less useful (essentially pedantic) training.

I also wonder exactly how many people will "slip through the cracks" when the labels change? Caitlin added a fascinating comment against my last post which highlighted exactly this problem. Some schools won't accept "autistic" children but will still accept ones with "aspergers". What happens when the label changes? Will the schools make allowances? Probably not.

The Solution?
I've thought long and hard about the solution to the problem and I've come to the conclusion that neither camp is correct. I'll save my opinions on this for another post though.

Monday, February 22, 2010

Aspergers versus Autism - The Great Label Debate (Part 2: The case FOR)

Following on from Part one, which admittedly didn't actually tell you anything about the issue (just provided background), this post will look at some of the arguments for merging the labels. I'll look at "against" in the post after this.

First, I want to clear up a couple of things.

Aspergers *IS* Autism
Aspergers has always been an autism spectrum disorder (ASD). In fact, for a few years, it was popular to refer to it as "Aspergers Autism".

I'm making this point because in reading some of the "negative" posts around the internet, it's become obvious that some people think they're entirely separate conditions.

There have always been people with Aspergers who want to distance themselves from Autism. I can remember struggling with acceptance of the word "Autism" when my son and I first got the label. The reason is simple; we've all be tainted by Hollywood's take on Autism or by our own experiences with severely autistic children. It's very clear that children with Kanner's autism are different in many ways from those with Aspergers Autism. Somehow it seems easier to accept the relatively unheard of label of "Aspergers" than it is to accept "Autism".

PDD NOS *IS* Autism
Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) is also Autism. It's a label given to people whom doctors are sure fit on the Autism spectrum but don't really satisfy all the criteria. PDD NOS is also affected by the changes to the DSM. It's probable that if Aspergers is merged with Autism, PDD NOS will be merged too.

Arguments for Merging the Labels

Because the Two are Fundamentally the Same
This is obviously the most important reason. If the two "disorders" are essentially the same, then it follows that the same sorts of intervention and support is required. Pooling the resources should (in theory) generate a lot of centrally administered and positive resources for everyone.

One of the best ways to test this idea is to presume that the word "Aspergers" no longer exists and that the new word is "Autism". A google search for these words makes it clear that Autism provides roughly five times the number of resources - Aspergers gives 2,960,000 hits and Autism, 15,500,000. I had a look at many of the links in the first page of results and found that most of the autism articles which appeared would be equally well suited to aspergers.

I guess this supports the theory.

Political Correctness
No discussion would be complete without at least a mention of the "politically correct" vibe at the heart of so many posts on the topic. Political correctness is a "nice" thing but it never represents reality. You see this kind of reaction in all forms of discrimination. Political correctness corresponds to an ideal. We would like those with more severe forms of autism to feel less discriminated against, so we become "brothers". I don't personally accept this argument but I've seen it quite often lately on blogs and discussion forums. My point here is simply; wishing something does not make it so.

Don't get me wrong. I don't feel superior to people with other forms of autism. Many of these people are everyday heroes and much better people than I. It's hard for me to decide whether joining them will be a vote of support or whether it will simply result in a group of very verbal "auties" drowning out those with lower functioning. After all, isn't that more or less the same effect that so many aspies complain about when it comes to "autism speaks"?

Rubbing off Positives
The rubbing off positives argument suggests that the Aspergers label has benefited from a great deal of positive influence recently. So much so that it's almost become "fashionable" particularly with TV shows like "Bones", "The Big Bang Theory" and "The IT Crowd" promoting "Geek Chic". More recently, aspies have been tackling the theory that we are without empathy with great success. The belief is that by folding Aspergers into Autism, we will be able to bring about positive changes in an area which still carries a stigma.

This idea has merit. If we could channel all of the work that Aspies have been doing recently into Autism, I'm sure that we could "lift the perception" of the label. There are however a few things which need to be taken into consideration.

1. For this to work, the Aspergers activists would need to start promoting "Autism" instead of "Aspergers". It would mean that blogs and forums would need to change names - I've already seen a bit of this happening - and it would have technical ramifications which could cause problems with sites and links for years to come.

2. Classic Autism would need to be preserved; There would need to be a commitment from the "Aspergers" community to ensure that people with other kinds of autism are given an equal voice. This isn't as easy as it sounds because people with severe forms of autism are considerably less vocal than most people with Aspergers. It's dangerously easy to "drown them out".

We ARE disabled
This too is tied up with the whole concept of "Geek Chic". Some of the overwhelmingly positive members of the Aspergers community, probably myself included, often give the impression that Aspergers is not a disability. It's very clear that one's "level of disablement" is impacted by a lot of factors, not just one's label. For example; there are environmental, social and acceptance factors to consider too.

I'm positive that my deafness has prevented me from having some of the worst issues of noise intolerance and distraction. It has also forced me to read more widely than I otherwise would have. Many of my peers with (sometimes) lesser issues have greater difficulty coping with situations than I do. Being freed from one overloading sense seems to have done me a lot of good. I've also grown up in a much more sheltered environment than other people and because of my hearing loss, I got early intervention even though my aspergers was, then undiagnosed.

Those aspies who struggle with their day-to-day lives see the merging of the labels as an opportunity to obtain more funding and better support. It's a fair call and I'm certain that it will provide access to these. My only concern is; where is the money coming from?.

I'm sure that I've hardly scraped the surface of this issue and I plan to cover arguments from the other side in my next post. In the meantime, if anyone has other reasons for wanting the labels merged, I'd be quite keen to hear them.

Saturday, February 20, 2010

Aspergers versus Autism - The Great Label Debate (Part 1)

Unless you've been hiding under a rock lately, you're probably aware that the DSM V due out in May 2013 but under review now, is considering dropping the "Aspergers" label and simply lumping it under the general category of Autism. There's naturally a great deal of online debate about this decision.

I've been (mostly) holding my tongue because I'm not entirely certain how I feel about the change. I can see positives and negatives on both sides and in a direct contradiction of my non-empathetic label, I can appreciate and empathise with several points of view. I've got three main aims in this post,

1. To talk about the manual and the change.
2. To provide some points of view
3. To discover (and discuss) my feelings on the merge.

I suspect that I won't be able to cover all this in a single post. If not, they'll be covered in a sequel post.

A Bit about the DSM
The Diagnostic and Statistical Manual of Mental Disorders (DSM) is essentially the "textbook" for diagnosing mental disorders. It includes all manner of disorders, ranging from Alzheimers and Autism all the way through to Voyerism. There doesn't seem to be anything starting with "Z". The list of "disorders" is here. It's quite interesting.

Over the years, the manual has had its fair share of controversy including, famously, the removal of "Homosexuality" as a disorder in 1974 following quite a bit of criticism from activists. Strangely enough, it's never generated quite the debate that the merging of Aspergers and autism seems to be causing.

It's interesting to note that the changes being discussed are to DSM V (The fifth iteration). The manual has only been around since 1952 with new versions released in 1968, 1980 and 1994. There have been few minor revisions between versions - in fact, the DSM-IV only has a single TR (Text Revision) version dated 2000. It didn't make any major changes to specific criteria for diagnosis but simply changed a few codes and provided additional information.

My point here being that we're now talking about a medical text which is effectively sixteen years old.

16 Years of Change
A lot has changed in 16 years in terms of diagnosis, intervention and social integration but arguably the biggest change of all has been ... the internet.

Sure, the internet isn't a mental condition (although some may care to differ). What it does do though is provide an amazing forum of feedback which was never available to previous "authors" of the manual. Of course, everyone knows that you can't trust everything you read on the internet and just as we have difficulty distinguishing between real professionals and "quacks", readers on the internet have no idea whether or not people really have the conditions they describe or whether they're simply "self-diagnosed" or, incorrectly diagnosed.

There are two major types of places on the internet where recent changes have driven "social reformations" in terms of the perception of aspergers and autism. The first of these are forums, such as WrongPlanet, Aspies for Freedom, Asperger and ASD UK Online Forum, Asperger Services Australia).

There are also other types of forums, specifically to do with medicine, psychology, parenting and special needs which have large sections dealing with aspergers. (examples include; Natural Parenting, MedHelp, PsychForums).

All of these forums are collecting and concentrating the experiences of groups of individuals of all ages with aspergers, parents of children with aspergers, teachers with special needs asperger pupils and people involved in various support services for people with aspergers.

In the days before such forums, doctors who were handing out diagnoses and advice might find that only a very small percentage of their interactions with special needs people were with aspies. Since appointments are often quite far apart, it's unlikely that many comparisons between the same individual over time were possible - and certainly, comparisons with others on the spectrum only occurred in research, not in day-to-day practice.

Now, the same doctors can spend an hour per day reading through these forums and get the concentrated feedback and experiences of hundreds of people on the spectrum at once. More importantly, parents who regularly read these forums are likely to find themselves considerably better informed than at least the doctors of the recent past - perhaps even, the doctors of today (depending on how much reading and specialization they do).

The other major internet influence on the aspergers knowledge is blogs, like this one and like many others (Try a google search).

Unlike Forums which collect and concentrate the experiences of large numbers of people, blogs tend to collect and concentrate the experiences of an individual over time. Of course, one of the best things about blogs is that the comments against specific entries provide a great "reality check". After all, if the majority of the commenter's disagree with something then it's likely that it's not part of the aspergers condition but results from either a comorbid, a environmental factor or something else entirely.

The other thing about blogs is that you can quickly sort out the honest ones from those which carry a heavy bias. After all, if you find false or biased information on a blog, you can always stop "following" it.

The main point I'm trying to raise here is that due to the internet, discussion on this revision of the manual is reaching a far wider audience than ever before and it's this which is driving the controversy.

Moving On.
In my next post, I'll be covering the different points of view and examining the reasoning behind them.

Saturday, February 13, 2010

Some thoughts on Intolerance

It wasn't an Aspergers Spectrum Disorder which prompted this post today but it was an equally unusual incident which made me think about the wider implications of intolerance.

We're all familiar with the concept of intolerance. Generally it's applied to people of different races, religions or sexual persuasions. Sometimes, as is sometimes the case with religion, the quality which is "intolerable" is chosen rather than unavoidable. Usually however, the victim has no control over their status. Sometimes, even the qualities which appear chosen are unavoidable. Young children, for example, cannot choose their religion separately from their parents. In this sense, although a religious difference is usually a choice, it's clearly unavoidable for many people.

Intolerance deals with the way our own behavior towards others makes them feel unhappy.

There are so many levels to intolerance which range from simple dislike through to full blown genocide. All are examples of intolerance and all although the range is wide, the path from one type of intolerance to another is relatively short.

How Aspies Sometimes Convey Feelings of Intolerance
Although I started this post intending to talk about intolerance towards people with ASDs, I think it's important to accept the fact that people with ASDs can also be intolerant. It is after all, a human condition. I'm not going to go into depth about normal intolerance from aspies - I think it's the same as it is for NTs. Instead, I want to look at the ways in which the reactions of people with aspergers syndrome can sometimes be wrongly interpreted as intolerance;

  • Social Cues: People against whom acts of intolerance are frequently perpetrated develop self-esteem issues and will see intolerance everywhere - even where it is not intended. Sometimes the eye contact issues or the lack of social interaction on the part of people with aspergers, can mislead people into thinking that they are disliked. If the other person has self-esteem issues, they will generally take this as a sign of intolerance.

  • Directness: Aspies usually don't attempt to "beat about the bush" when discussing issues. Directness is our main approach. Hence, aspies can sometimes make comments about a person's appearance without intending harm. For example asking someone directly about a skin blemish or remarking on other aspects of their appearance or heritage. These are not usually intended as insults but they almost always end up being taken as such.

  • The Use of Outdated Language: Aspies often have a wider vocabulary than most people. They love new words and are always keen to try them out in discussion. This doesn't usually cause too many problems when a rarely used word is simply unknown to other people but sometimes words which are no longer used, aren't being used for a reason.

    This is particularly true of a variety of racial slurs. I can remember using them as a kid without intending harm, simply using a new word from a novel like Huckleberry Finn. In some cases, I'm probably lucky to still be alive. I know that my parents were often shocked and embarrassed by the things I said.

  • Special Interests: There's no denying that the special interest is one of the main driving forces of aspie behaviour. Imagine the consequences when an aspie with a special interest in the holocaust begins talking to someone from Germany, or a Jewish person. Similarly, aspies with a fixation on health can cause great offence to people with weight issues.

Intolerance towards People with ASDs
There are lots of different ways in which intolerance can be expressed without resorting to physical harm. As parents of children on the spectrum - or as people on the spectrum ourselves, we need to keep an eye out for the less obvious forms of intolerance. It's a steep and slippery slope from the minor to major forms of intolerance and the only solution is an intolerance of intolerance itself.

Some of the less obvious forms of intolerance towards people on the spectrum include;
  • Exclusion, from games, playgroups, teams, employment and organisations.
  • Name calling, teasing and all other forms of bullying
  • Curebie Hassling and Disciplinarian Hassling
I really want to touch on the two types of "hassling";
  • Disciplinarian Hassling: This is where a person who doesn't really believe in autism thinks that all a child needs is a good smack. The kinds of people who engage in this often say things like "give me a week with him and I'll have him behaving".

    These people are very dangerous and violent. It's probably true that you curb a lot of bad behaviors through violence but it isn't a good idea. The traumatic side-effects of negative behavior modification have far-reaching consequences and can in fact make it more difficult for children to lead normal lives.

  • Curebie Hassling: This is also a very dangerous practice. On the one hand, there is an effort to remove all autistic traits from the gene pool by aborting babies who show signs of the condition. Often the "culling" is unnecessary because the results aren't accurate. I have friends who were told that their child had a 90% chance of downs syndrome but their child is completely unaffected.

    Even if it were possible to be entirely accurate, who's to say that we have the right to deny these children life? So much of modern science has been developed by people on the spectrum that it seems they have specific roles in society. Remove the deep thinkers and you potentially remove innovation from society as a whole.

    Then there's the other side of curebie hassling. The side that deals with children and adults who have already been born. In this case, people have identified them as different and not to be tolerated. They've put them into institutions, drug and disciplinary programs - all with the aim of making them "normal".

    Quite often, the worst curebie hasslers of adults and children on the spectrum are the child's parents themselves. It must be a very painful thing to not be accepted by ones own family. Surely, when everyone else around you is being intolerant, the one place you should be able to find acceptance is at home.

Acceptance instead of Intolerance
The problem is that people with differences, regardless of whether they are colour, race, religion, sexuality, biological, appearance or neruological all suffer at the hands of the "majority". They are aware of their differences and often feel compelled to hide them. This isn't always possible. Sometimes they express the desire to be normal.

People with a difference generally know that they are different. They live with their differences everyday and with the constant disapproving stares and unthinking discriminations of others. They need no reminding of their differences. Simply acceptance.

If the problem were racial for instance, modern social values would suggest that the affected person stop "trying to be white" and instead understand that there is no difference. We are all the same and all as good as each other. The problem in black/white prejudice isn't that a black person is the wrong colour but rather that a particular white person has not accepted them.

This is true for people on the spectrum too. The problems don't lie with the person on the spectrum but in the intolerance of others for that person's differences.

Disclaimer: I've deliberately stayed away from the original reasons for this topic so as not to upset anyone. I've used race in several examples here only because it's probably the best understood form of intolerance. I hope I haven't offended anyone but if I have, my apologies are most assuredly offered.

Thursday, February 4, 2010

FTF: Post 1: A Jaw dropping experience" by Marla Roth-Fisch

The first article of the series is now available online;

by Marla Roth-Fisch
(author and illustrator of Sensitive Sam - Amazon Link)

I won't spoil it by publishing any details or comments here.

FTF: An Introduction

I'm honoured to be part of an inspirational new series of blog posts developed by Hartley Steiner (from the blog Hartley's Life with 3 boys)this year. The series is called First things first and it's about... well, I'll let Hartley explain;

“The series is dedicated to reminding parents that they need to take care of themselves. A renewal of our commitment to take the time required to nurture not just our children, but ourselves. We have dedicated all of our energy to making sure our children are taken care of, but now is the time to remember to focus on our own physical, mental and emotional health, our spirituality, as well as our relationships with friends and our spouse. This year, I want to encourage all of you to take care yourself. And I hope each month our guest writer will inspire you to do just that.” - Hartley Steiner

I'll announce each of the articles on this blog as they appear and give you the appropriate link to Hartley's blog. Since Hartley is the originator of the idea, it makes sense that she should receive the traffic. I'm also terrified of mucking up the formatting.

I'll be using the banner above to announce posts. I know it's not the best but it is my drawing so I don't have to worry about copyright issues. My wife has already told me that the man looks like Michael Myers.

In the meantime, here is a link to a great article which introduces the series;

February 2, 10:53 PMDouglas County Special Needs Kids ExaminerGina St. Aubin