Saturday, July 3, 2010

The Danger of Allowing Aspergers to Excuse Wrongful Behaviour

Aspergers, it seems, is permanently in the news these days. Unfortunately, it's usually for the wrong reasons.

It seems that many people consider aspergers to be a great excuse for poor behavior.

For every great "suspected aspie" like Bill Gates or Albert Einstein, it seems that there are several "Gary McKinnon's", "Martyn Bryant's" or John Ogren's and for every positive generalization (like Savant), there's several bad ones (like Sociopath and emotionless).

I'm not here to debate whether the schools, parents or special education did enough to help these people. Nor am I here to say whether or not they should have been allowed to read Stephen King books, watch X rated films or even be allowed near computers.

The fact is that in all three "bad" examples mentioned above, Aspergers has been used as an "excuse for bad behavior" when it is clear that there are other forces at work. The perpetrators had other conditions such as bipolar and sociopathic disorders but these get ignored and aspergers takes the rap.

There are two things that I want to cover in this post;
  • Maintaining a Positive view of Aspergers
  • Not Accepting Aspergers as an Excuse for Bad Behavior

Maintaining a Positive view of Aspergers
Regardless of what happens around the world, our children are stuck with the aspergers label (or, with DSM V, autism). The label loosely "describes them" but it does not dictate their actions. They are all individuals with freedom of choice. They can choose to be good and they can choose to be bad - and they do know the difference between right and wrong.

Articles and false claims (because many of them are false - Martyn Bryant's diagnosis was eventually revoked) don't help anyone. All they do is make people wary of the label. Wary of our children and wary of us. They take away from individuals with aspergers the concept of being innocent until proven guilty.

As such, I feel that it is the duty of every parent of an aspergers child and every advocate of aspergers to correct these negative viewpoints as and when they arise. I'm not talking about walking around with placards or defending serial killers - though if you can respond in comments to news articles and highlight other issues, other conditions, environmental factors and wrong choices, I think it helps to take the focus of aspergers.

This time however, I'm talking at a personal level. I'm talking about other parents, work colleagues, doctors and teachers who repeat the myths of aspergers. These myths need correcting.


Not Accepting Aspergers as an Excuse for Bad Behaviour
The other half of the problem is that we often accept aspergers as an excuse for bad behaviour. Sometimes we even do this automatically. It's something that we need to stop doing.

A Visitor Example
It's a well known fact that a lot of social contact is uncomfortable for people with aspergers. This becomes even worse when the aspie is put into a noisy crowded room. At home, in a controlled environment, things are quite different. If things get too uncomfortable, your child can always retreat to the comfort and safety of their room.

Imagine that you have an early-teen child and that an important family visitor is coming. You may find that your child wants to stay in their room. Maybe they'd rather be reading or playing computer games than talking with this visitor. Sometimes they'll use your sensitivity to their aspergers difficulties as an excuse to get out of social contact.

Don't let them do this. Social contact is important and the more practice they can get, the easier they'll find it to adjust to. Allowing them to run from the problem all the time might actually increase their social anxiety.

Now, don't get me wrong. Sometimes your child really will be overwhelmed. You need to learn to recognize the truth in your own children. You can't force what doesn't come naturally and if they show serious discomfort, you need to allow them to retreat. Whenever possible though, you should try to get them to spend a just a few uncomfortable minutes practicing social skills before letting them off the hook.

Not being welcoming to a visitor is bad social behavior. We spend so much time teaching our kids good table manners, to say please and thank you and to wait their turn for things. Why should social lessons be any different.


Adult Examples
Then there are the adult examples. It feels like hardly a week goes by without me reading some kind of sob story about someone who is in an unhappy relationship with an aspie. They often talk about the lives that they've had to give up and the emotional abuse that they're subjected to.

This is not simply an aspergers problem.

The fact is that aspies who are capable of getting into a relationship are usually quite capable of communicating at least rudimentary emotions. Sure, it's hard work and sometimes we just want to be lazy but it was our choice to be in a relationship - so it's our responsibility to do our share to keep it working. It's also the responsibility of our partners to not accept anything less and to make sure that time is set aside for work on our relationship.


Finding Balance
My relationship with my wife would be much worse if she didn't pull me up every now and then and remind me that I need to be paying more attention to her, spending less time on the computer and spending less time at work. If she took the pressure off, our relationship could easily degenerate into a hotel-style relationship where we all become so self-obsessed that we seem not to care about each other.

She understands that aspergers can sometimes make these things difficult but she doesn't accept that it will make them impossible - and consequently, neither do I. She won't push me too far and we both know that I have social boundaries. Sometimes places are too overwhelming for me and I can't stay long.

For example; when we go shopping, we usually "split up for an hour" and shop separately because it gives us the freedom to shop without stress. We will still get back together for the important bits, like lunch and furniture shopping but it means that I don't need to hang around sensory nightmares (like the perfume counters) and it means that I don't bore her to death going into bookshops.

I know some people on the spectrum who can't (or won't) go shopping at all. Sure, there is sensory overload but there are ways to reduce it. Headphones are one of the best ways to overcome noise overload and dark sunglasses can often reduce the social problems. We have to be on the lookout for our issues (and those of our partners). Sometimes they'll need to do things alone but to do everything alone because of aspergers is to allow the condition to excuse bad behavior - and that is not acceptable.

58 comments:

Foursons said...

Thank you for writing this! This is how we try to raise our son on a daily basis.

The Rambling Taoist said...

Such an important post! Too often, as you state, we EACH like to find excuses to sort of sweep away why we've acted like an ass toward someone else. As you wrote, being an aspie or bi-polar or an alcoholic simply is no excuse.

As an adult -- one who must deal with having Asperger's -- I'm still responsible for who I am and how I comport myself in the social world. I may encounter challenges that the vast majority may not face regularly, but no one said this life is fair!

Every human being I have ever known or met has their own set of challenges, be they neurological, physical, emotional, mental and/or behavioral. If a person wants to live in the grown-up world, then we must find ways to overcome our challenges. It's as simple as that.

Shae said...

Great post! I agree. It's one thing to ask for understanding and empathy, and quite another to use it as an excuse for bad behaviour. I admit I do dodge certain social situation more than I really should, but I also make a concerted effort not to let myself get away with too much of that. Thanks for posting this.

ShirePerson said...

I guess there are two issues there. Does Asperger's excuse bad behaviour? i.e. do people with Asperger's syndrome think it is OK not to try to modulate and communicate emotions, mix with other people, etc using the claim "I've got Asperger's" as a justification? Is Asperger's an excuse to "slack off" in the more difficult social and emotional tasks?

And the other issue (more a problem with the media): does Asperger's "cause" bad behaviour? i.e. is it inevitable or highly likely that people with Asperger's will behave badly, even criminally, simply because of having Asperger's syndrome?

My impression is that the latter is a myth suggested (though not stated outright) by media articles that dwell on diagnoses ("Person P did this bad thing AND person P had condition X" - hinting that having condition X somehow makes it more likely, even probable, that a person would behave badly that way).

A common view is that "normal" people do "normal" things and "abnormal" people do "abnormal" things. When some unusual criminal act takes place, people often try to rationalise it by saying "The criminal did this abnormal act because they are an abnormal person". Any diagnosis - especially one not well understood by the average person - will be seized upon as evidence: "What could you expect? They had condition X, no wonder they did such a terrible thing". The sub-text is: people who do terrible things are "not like us". I think Asperger's syndrome is just a convenient "condition X" to pick on. It could also be schizophrenia, ADHD, bipolar, etc.

(Greetings from another person in Sydney, BTW - but deep south in the Shire)

ShirePerson said...

Just to clarify: what I meant is - "excuse" has to do with moral justification (or lack of it); while "cause" has to do with psychological (scientific) explanation.

So one issue is a moral issue - should people with Asperger's be allowed to "slack off" when they are capable of handling a situation, but don't want to.

The other issue is a "scientific" issue - or an issue with unscientific prejudice: are people with Asperger's syndrome (all else being equal) significantly more likely to commit offences, etc? Is it an important factor in the causes of bad behaviour? Or is the linking of Asperger's to bad behaviour, even criminal offences, more a case of prejudice ("They're not like us!")?

Riayn said...

This is a great post. Asperger's/Autism is never an excuse for bad manners or bad behaviour. It may take as longer than an NT to learn the correct behaviour and that road may be difficult but it is never impossible.

Apples and Autobots said...

Thank you so much for this post! I don't have Asperger's, but my 8 yr. old son does. We have very clear cut rules for what is and is not allowed. However, I do tend to let him slide on some social things, and you've reminded me why I need to not do that. I try very hard not to punish him for things that he can't help, but sometimes it's hard to tell. Now you've got me thinking that maybe it doesn't matter. If something is wrong, does it matter whether or not the behavior is a result of Asperger's? Most adults with Asperger's that I know did not become aware of a diagnostic label until they were older. I wonder if having a diagnosis will be something that my son does try to use as an excuse. Any thoughts on how to avoid those pittfalls?

DanielBT said...

As another fellow Deaf Aspergian, I’ve never once wanted to use my disability as an excuse for my behavior. However, due to my lack of experience, there have been times where I’ve strayed into inappropriate reactions solely because of missing information.

When I’m confronted with something I have no prior idea of how to handle, my first instinct is to panic. I chalk up my entire existence up to my knowledge from comics, books and movies I’ve seen. When my computer fan broke down, I was in complete disarray because there was nothing I’d read in any media about that happening, and had no idea how to cope. Sure, there were stories about computer viruses, but nothing about computer fans. What we need are stories that can cover EVERY possible thing that can go wrong. And that’s a never-ending pitfall of despair - it’s IMPOSSIBLE to think up every possible permutation, which is why we worry so much.

It’s only been recently that my family’s stopped being lenient with me and started pointing out when I’m doing something wrong. They said they were going to stop enabling my behavior, and so far, I’ve managed to keep my cool even in the more stressful kinds of situations. Of course, I’m now worried that I might be losing something even as I’m no longer allowed to have controlled outbursts.

One good coping mechanism would be to read more books with people with Asperger’s. House Rules has been recently touted around, and was a real eye-opener for everyone my Mother’s given it to, even though I felt it suffered from Can Not Spit it Out syndrome.
http://tvtropes.org/pmwiki/pmwiki.php/Main/CanNotSpitItOut
Lisbeth Salander of The Girl with the Dragon Tattoo fame has very Aspergian tendencies that make her stand out from the rest of the crowd.

Incidently, what is it about the Port Authur massacre that’s Aspergian? The Wiki entry on the man himself is more informative.
http://en.wikipedia.org/wiki/Martin_Bryant

Gavin Bollard said...

Thanks Daniel,

I'll have a look for "House Rules".

The wiki on the Port Arthur massacre has been updated. Originally, during his trial, Martyn Bryant (the killer) claimed "aspergers" and had actually been diagnosed as such.

The claim was revoked by the court when subsequent doctors found no evidence to suggest that he had it.

bob's bs said...

Gavin - Thank you so much for pointing out the problems with assigning labels to those of us with genetic aberrations or other defined syndromes. Your description of "helping to describe" a condition is what we'd all like to ascribe to. I have Klinefelter Syndrome; I was diagnosed only last November, and am 53 years old. Quite a relief to have found out a "description" of why I was the way I was. But after a consultation with my genetic counselor, he warned me to not use it as a crutch or as an excuse. I think I'll be using the term description from now on. Thanks so much!

Anonymous said...

Speaking as a person with Asperger's, I have never had a problem with communicating emotions. I've never had anyone say to me "I have no idea how you feel when I talk to you!" I have, however, noticed people explaining away social problems I have by calling them "symptoms". I would much prefer that they actually talk to me about them rather than saying to me months later "Well, I just figured it was because of your Asperger's." Just because some people have a disorder doesn't mean they don't have to interact with other people. What if the problem isn't Asperger's-related? What if it is Asperger's-related, but can be fixed by bringing it up?
As you say, social disorders like Asperger's should not be an excuse for bad social behavior.

Stephanie said...

"The perpetrators had other conditions such as bipolar and sociopathic disorders but these get ignored and aspergers takes the rap."

You are reinforcing a stigma very similar to the one you're trying to stop in this statement. Bipolar or sociopathic disorders do not necessitate these behaviors any more than Aspergers does.

It still comes down to choice and the bad examples making the wrong ones. Our society likes to describe its villains and its criminals in terms of mental disorders. This is bias. It excludes from public awareness the people who share the same diagnoses who aren't criminals.

Pinning the behaviors on a different diagnosis instead of individual choice just perpetuates the same bias, with the added caveat "it's not us, it's them."

Rachel Cohen-Rottenberg said...

I agree with you, Gavin, that no one should ever excuse bad behavior for any reason. However, I think it's important to note that the abilities of autistic people can change from day to day, and not always consistently. For instance, some days I am more or less capable of expressing myself verbally or following a verbal conversation. When I'm having a fairly nonverbal day but I'm in a fairly good mood, I'll give a smile and a wave to people I meet when I'm out walking, but I won't engage in more than a hello. If I'm completely overloaded, I might just walk quietly and not engage at all (although if I come home and see a neighbor, I will always acknowledge them kindly).

I don't force myself into social interchanges when I don't have the energy for them, and I don't believe in forcing anyone else to. That isn't using autism as an excuse. It's taking care of myself. I think that it's important to encourage kids to take care of themselves in the course of encouraging their social abilities. Otherwise, you get someone who fulfills the expectations of others but can't read their own signals. A balance is very important.

Gavin Bollard said...

Stephanie,

I was wondering when someone was going to pick up on that line - and I'm glad you did.

I can't claim the same amount of familiarity with other conditions that I can with aspergers but I do have several friends with those conditions.

The people I know with Bi-polar disorder very frequently attempt suicide. They also tend to, at least verbally/written, attack people whom they call friends during their good moments. I'm not entirely certain how much self-control they have when they are at the bottom of their trough. I don't know if they're capable of inflicting harm on others without meaning to - but I have to admit that it's a possibility. Sometimes I see them acting and reacting without thought.

The same goes for the people I know with Schizophrenia. Many of them self-harm "with a vengeance" and often they seem to "drop out of reality altogether". The possibility has to exist that someone in this state could unintentionally harm others. For example, if someone were to intervene while they were stabbing themselves with scissors.

That said, although these can obviously be dangerous conditions, none of the people I know have harmed others - only themselves.

So, unless they're obviously dangerous, why shouldn't they be given the right to be innocent until proven guilty?

It all sounds great until something goes wrong.

I'm not saying that either choice is right or wrong. I don't think there's a correct answer.

As you imply, everyone needs to be taken on individual merit - not on their diagnosis.

Rachel Cohen-Rottenberg said...

I wholeheartedly agree with Stephanie. There are people with Asperger's who also have violent meltdowns, become suicidal, etc. Does that mean that we should get tagged as being a danger to ourselves or others? Or course not, and neither should people with any other atypical condition. The vast majority of people with schizophrenia and bipolar and autism do not do violence to anyone. In fact, most of the people out there who have violent meltdowns, become suicidal, and otherwise do harm to themselves and others are on the neurotypical end of the spectrum. Does that mean being neurotypical predisposes a person to violence? No, of course not.

Please take care about making generalizations based on the people you know. It's akin to saying "I can speak about Jewish culture because I have Jewish friends." You can't know unless you inhabit the world you speak of. In my opinion, people should speak for themselves, and themselves only. Making any kind of generalization about a group you don't belong to runs the risk of perpetuating stereotypes. It also tends to discourage anyone who belongs to the group from becoming part of the discussion, and that doesn't move anything forward.

Caitlin Wray said...

I'm having some difficulty with some of the discussion.... I think we have to understand that while human choice is great, not all of us have it all the time. The fact is that there ARE diagnoses that mean you DID NOT HAVE A CHOICE and those are generally the mental disorders that result in a 'not guilty by reason of mental defect' (as it's called in Canada) instead of a criminal conviction.

Mental health advocates spent decades lobbying to have criminal codes all over the world modernized to distinguish between those who perpetuate crimes because of criminal intent, and those who were mentally ill and could not make a choice.

This takes us to the definition of "mental illness" - if you are bipolar or a sociopath, you have a mental illness. If you are Autistic or have Aspergers, you do not - you have a neurological difference.

My mother had a serious mental illness so I have lived with it's effects my whole life - I can say "mental illness" loud and clear without cringing - but most people cannot. It is a dirty word - and that's ONE thing it shares with Autism.

My mother did not have control over her delusions - they never led to any violent acts but if they had - she would NOT have been responsible for them and yes - it would have been her diagnosis that "excused" her. There is nothing wrong with that - it is simply acknowledging the very real difference between a choice, and an illness that robs you of your choice.

Caitlin
www.welcome-to-normal.com

Caitlin Wray said...

I also wanted to address Apples and Autobots' comments about social challenges with young kids who have Aspergers. I think having Aspergers absolutely does excuse a child from UNDERSTANDING and QUICKLY ADJUSTING to social rules and norms. It doesn't excuse them over time from learning how to manage that 'defecit' - where they are adequately supported and encouraged to do so.

So, it's not ok as a parent to constantly disregard or overlook your child's social flubs (although I don't feel it's necessary to swoop in and rectify every single one either) but the goal is not to punish or discipline your child for doing something that was socially 'wrong' - the goal is to educate them in how to recognize, memorize, and respect social rules and norms where appropriate and required.

For NT kids this process is mainly developmental, meaning it happens 'naturally' and if they are not behaving appropriately then discipline may be warranted. However, for kids on the spectrum, this is less a developmental process and more one of education - which is why I stipulated that you can only expect kids on the spectrum to learn how to navigate social rules if they have the proper support system. For our kids, it's important to ensure they really understood what the social situation was/what they did 'wrong' - before determining whether discipline is required.

Many times with my son I find it really is not appropriate to discipline him because he didn't 'get' what was going on, and he didn't 'get' why he was doing something unacceptable. In these instances it really is fair to say his Aspergers 'excuses' him from taking responsibility for his actions - it just doesn't excuse him from learning over time how to manage similar situations and at that point, take responsibility for mistakes.

So I think it's important to acknowledge that understanding and navigating social rules is a process - and until a child is at a point where they have gone through enough of that process - you cannot hold them responsible for a neurology that led them to muck up a social situation.

Caitlin
www.welcome-to-normal.com

Caitlin Wray said...

I also wanted to address Apples and Autobots' comments about social challenges with young kids who have Aspergers. I think having Aspergers absolutely does excuse a child from UNDERSTANDING and QUICKLY ADJUSTING to social rules and norms. It doesn't excuse them over time from learning how to manage that 'defecit' - where they are adequately supported and encouraged to do so.

So, it's not ok as a parent to constantly disregard or overlook your child's social flubs (although I don't feel it's necessary to swoop in and rectify every single one either) but the goal is not to punish or discipline your child for doing something that was socially 'wrong' - the goal is to educate them in how to recognize, memorize, and respect social rules and norms where appropriate and required.

For NT kids this process is mainly developmental, meaning it happens 'naturally' and if they are not behaving appropriately then discipline may be warranted. However, for kids on the spectrum, this is less a developmental process and more one of education - which is why I stipulated that you can only expect kids on the spectrum to learn how to navigate social rules if they have the proper support system. For our kids, it's important to ensure they really understood what the social situation was/what they did 'wrong' - before determining whether discipline is required.

Many times with my son I find it really is not appropriate to discipline him because he didn't 'get' what was going on, and he didn't 'get' why he was doing something unacceptable. In these instances it really is fair to say his Aspergers 'excuses' him from taking responsibility for his actions - it just doesn't excuse him from learning over time how to manage similar situations and at that point, take responsibility for mistakes.

So I think it's important to acknowledge that understanding and navigating social rules is a process - and until a child is at a point where they have gone through enough of that process - you cannot hold them responsible for a neurology that led them to muck up a social situation.

Caitlin
www.welcome-to-normal.com

Stephanie said...

"I can't claim the same amount of familiarity with other conditions that I can with aspergers but I do have several friends with those conditions."

I, too, know people with both diagnoses. When they are receiving appropriate treatment (i.e. treatment that works) and are being treated as human beings, then their behavior becomes much more predictable and much more under their own control. When they are assumed to be less than normal people, they are less likely to receive appropriate treatment and are obviously not being treated as human beings, and their behaviors (in relation to their symptoms) are less under their own control and therefore less predictable.

The problem, as I see it, is that when we as a society tolerate prejudice and bias (like that of the journalists reporting on these cases) to undermine their humanity, we create a situation where people with these diagnoses are less likely to get the care they need and are more likely to be dangerous to themselves or others because of that lack of care. Further, I would say this is true of human beings in general, and doesn't require a mental health diagnosis. When people are systematically de-humanized, they tend to become less civil.

"So, unless they're obviously dangerous, why shouldn't they be given the right to be innocent until proven guilty?

It all sounds great until something goes wrong."

If if someone is obviously dangerous, he or she has the right to be innocent until proven guilty. A marine is dangerous, but that doesn't mean a marine has committed a crime. If that marine were to commit a crime, it isn't because he or she is a marine, regardless of the training the person received; it's because the marine made a choice. I would contend the same logic applies to people with mental illness.

For example, my husband is diagnosed with bi-polar disorder. Several years ago he was frustrated because he couldn't get the seat belt out of the van door. It was stuck. The door wouldn't close. It was very frustrating. He was off his medication at the time and he beat up the van door severely enough that the door itself had to be replaced (but he got the seat belt unstuck). Was his bi-polar a contributing factor? Yes. Was it why he beat up our van? No. He could have chosen to let it go and ask someone with more mechanical skills to assist. He did not. He chose violence and he knew the choice was wrong.

In our married life, my husband has not assaulted a person. He did before. And he's come close. But he chose not to.

The people in these stories chose to act as they did. To emphasize anything less puts others at risk.

Caitlin Wray said...

I understand your viewpoint Stephanie, but I don't know if the people in these stories chose to act as they did, because I don't know the people in these stories, or what mental illnesses they are (or are not) living with. That's really why the courts make that determination on a case-by-case basis.

Here's what I do know:

An individual in a manic or bi-polar rage, unmedicated, may do things that they have no control over. That is the purpose of medication - to give them back their control.

A scitzophrenic who is utterly and completely lost in a world of delusions, is not making choices about what they do, say, where they go or even what they see.

My mother wanted the microchip removed from my son's brain. Trust me - she wasn't making a choice to believe he had one in there. Her illness was robbing her brain of it's ability to make rational choices - that is why the criminal code distinguishes between criminal intent (choice) and mental illness (lack of choice).

This is not to say that every single person with a mental illness is not ever responsible for their actions - but it does mean that determining when they are responsible and to what extent, becomes MUCH more complicated.

All this is of course unrelated to the point that those with Aspergers make choices and need to be accountable (Gavin's point). But it does help to delineate the difference between a neurological difference that makes life more challenging, and a mental illness that makes your life no longer your own without proper treatment.

Caitlin
www.welcome-to-normal.com

Caitlin Wray said...

This is the most heart breaking example of someone who perpetrated the most gruesome act, and did not have a choice: http://www.theglobeandmail.com/news/national/article700732.ece

The article was written before the 'attacker' was identified and his background discovered. It was therefore reported as a "random act of violence" and because of how profoundly gruesome it was, it made headlines around the world.

Vince Lee is the man who committed this act just outside of the city where I live. He is schitzophrenic and was having a delusion at the time, believing that the young man was secretly plotting to kill him. When Vince Lee came out of his delusion after being medicated in jail, he BEGGED for the guards to kill him, because he could not live with what he had done. My heart breaks for the victim but also for Lee because the public here sees him as an evil, demonic figure. They see him and all schitzophrenics that way - as inhuman - because they believe he chose to do this.

This is why recognizing that a mental illness can rob you of your choice, is the only way to ensure the mentally ill ARE seen as human beings.

Caitlin
www.welcome-to-normal.com

Gavin Bollard said...

As I see it, there are two issues with the Vince Lee article;

1. That the man was carrying a "large hunting knife" on a bus which suggests that the idea was at least expected even if not necessarily premeditated. The guy appeared normal enough at the time to get on a bus, so why, during his lucid moments didn't he realise that it was wrong to carry such a weapon.

2. That by allowing Vince his freedom, the state cost someone else their life.

It may be that in this case schizophrenia "excuses" this "bad behaviour" but if that is the case, doesn't it follow that schizophrenics need to be regularly checked to ensure that they are still on their medication - and that it's effective. If they refuse their medication and are considered dangerous then restraint might be the only option.

People with aspergers are unmedicated. They are not considered to be dangerous and they are considered to be generally responsible for their own behaviour.

Although it's true that aspies generally lose control during a meltdown, they do remain conscious of their acts even if control over them is somewhat limited. This is quite different from what schizophrenics experience.

I've never heard of an aspie meltdown having a similar effect to the Vince Lee incident but if it happened, I think that it's certain that the diagnosis would offer no protection.

Caitlin Wray said...

Hi Gavin, that's not really how schitzophrenia works. For unmedicated individuals, at a certain point, there are no "lucid moments" where they can decipher delusion from reality. Schitzophrenia is a degenerative condition, it becomes progressively worse and worse over time unless treated.

He carried that knife not because he was premeditating a crime, but because he believed there were spies everywhere plotting to kill him, and the voices were telling him he needed to behead that man. There is no choice in the midst of those kinds of delusions. The calm resolve with which he floated through that unimaginable scene, contrasted against his complete despair when medicated and told of his actions, is testament to the depth of his illness.

The other important point is that the courts did not allow him his freedom - quite the opposite. They did what mental health advocates have ensured courts would do in these cases - they sent him to a secure mental health institution and forcibly medicated him. So the point I was making about responsibility is that there is a distinction between criminally responsible, and physically responsible. He was physically responsible for that act and so steps needed to be taken to protect the public, but those steps were not adding him into the criminal population, because he has an illness that requires treatment and he won't get that in jail.

To answer your question about 'shouldn't all schitzophrenics be monitored' - no. In fact, there can never be a blanket state requirement that all schitzophrenics be medicated. To do that, or to forcibly monitor all of them when the vast majority have never caused anyone harm, is to ignore their human rights and move a country closer to one that cannot call itself free. It is similar to the idea of sterilizing women on welfare who continue to birth babies they cannot afford - we would rather they not be able to keep having babies but to step in and force them to do something to their bodies would be a huge step backward in the evolution of human rights and freedoms. Are their consequences like slain bystanders due to the unmedicated mentally ill, or unwanted babies due to the irresponsible and impoverished womem? Yes. Are they considered bad enough and frequent enough to warrant sending society back to the 1800's? No. The solutions are not state-imposed sanctions and a reduction in freedom. The solutions are less stigma and more education.

But again, I completely agree that this is an aside to the point that those with Aspergers do NOT have a mental illness and do have the freedom of choice. My point in all this was to recognize that there ARE some diagnoses (not Aspergers or Autism) that genuinely affect a person's ability to choose their actions.

Caitlin
www.welcome-to-normal.com

Gavin Bollard said...

Thanks Caitlin,

Like I said I can't really talk about schizophrenia. I'm not familiar enough with it. My best friend of 29 years has it and I know that it's difficult when he's unmedicated and that he doesn't fully accept that his voices aren't real.

I would hate to see my friend's freedom affected and he seems to be not dangerous (but has been to himself in the past).

Unfortunately, since my friend lives alone, there's no family monitoring of his medication. If he suddenly decides to stop taking it, nobody would know until an incident occurred.

If something were to happen as a result, we'd all be affected (and guilty).

Personally I'd like to see mandatory medication status checks in place for him even though I understand that they'd affect his freedom.

Of course, what if he decides that he doesn't want to take his medication? Surely nobody has the right to force-feed them to him - or further restrict his freedom based on his personal choices.

I don't know. It's all such a difficult question. As an aspie, I seek black and white answers and in this case there are none.

Caitlin Wray said...

"As an Aspie I seek black and white answers and in this case there are none".

You are lightyears ahead of most NT's in your wisdom my friend.

Stephanie said...

Caitlin,

You said: “An individual in a manic or bi-polar rage, unmedicated, may do things that they have no control over. That is the purpose of medication - to give them back their control.”

I would contend that a person in a manic or bi-polar rage (with or without medication) may do things they have extremely limited control over. In my experience, how that person relates whether or not they had any control is directly related to how empowered they have felt in their lives. People I know who have been taught they have no control over their mental illness will exert no control over their mental illness. People I know who have learned they have some control can exert that control to both stave off rages and re-direct their rage when in the grips of it. My husband used to be the former and has become the latter.

Then, there is the “before” period. I have known people who choose to go off their medication; the resulting loss of control is directly related to this choice. I also know people who choose to ignore certain directives in their care; the resulting loss of control is directly related to this choice. I know people who settle for inadequate or inappropriate care; this also results in negative consequences.

I have also been in the grips of mental illness myself (depression, in my case) and know personally that the choices you do make, the choices you can make have a dramatic effect on the outcome.

This is, of course, not to say that the choices available are always good or easy or recognizable. Nor is it to say that our perception of the choices are not affected by outside forces, such as how we are raised or what medical services are available or how effective those services are. Choice is certainly not the only factor, and as a society we have a responsibility to fix those parts of our social and economic system that are broken. But by denying the choices people with mental illness do have, we perpetuate the circumstances where they are incapable of making good choices when they are available, and we deny them their humanity.

“A scitzophrenic who is utterly and completely lost in a world of delusions, is not making choices about what they do, say, where they go or even what they see.”

The one schizophrenic I know who descended that far into delusions started down the path by choosing to get off her medication—that’s an important choice. I don’t know, once the delusions had taken a hold, how much choice she had to ignore the voices that told her to do things. But I have talked with other schizophrenics who have “fought” the voices and “won” sufficient self-control to obtain medical care and prevent disaster. I have also talked with some schizophrenics who would hide their symptoms from family, friends, and medical providers for as long as they could, preventing others from helping them get the care they needed before that care became a need for temporary institutionalization. Choice isn’t the only factor, but it is a significant factor.

As an aside, none of us make conscious choices about what we see, hear, touch, feel, ect.

(continued below)

Stephanie said...

Caitlin (continued),

“…that is why the criminal code distinguishes between criminal intent (choice) and mental illness (lack of choice)”

I agree there is a distinction, but I’m not sure that lack of choice is the right distinction to make—it’s far more complicated than that. Choices that affect the outcome are made. I’m not saying that, when one is in the grips of mental illness, rational intent is present when they commit criminal acts. Nor am I suggesting that people with mental illness who commit criminal acts should be subject to the same response that those without mental illness are subject to. What I’m saying, which relates to what Gavin wrote, is that by denying people’s choices we deny their humanity; by saying they committed criminal acts because of their mental illness (versus because of the complex circumstances that led to the acts) we do an injustice to all the people who share the label who do not share those complex circumstances, whether that diagnosis is bi-polar, schizophrenia, or Asperger’s.

“But it does help to delineate the difference between a neurological difference that makes life more challenging, and a mental illness that makes your life no longer your own without proper treatment.”

And that is exactly the perception I’m challenging. It is not mental illness that is making their lives no longer their own, but our perceptions of mental illness, our society’s prejudice against the mentally ill, and our society’s inappropriate and counterproductive responses to mental illness.

“My heart breaks for the victim but also for Lee because the public here sees him as an evil, demonic figure. They see him and all schitzophrenics that way - as inhuman - because they believe he chose to do this.”

I’ve met very few people who try to justify their inappropriate treatment of people with illness based on an assumption that the people with mental illness chose to do whatever they did that the other person didn’t like. Those I’ve met justify their callous response based on assumption that a) people with mental illness can’t be helped, and b) that they’re not worth helping.

Stephanie said...

(I apologize for the lack of linearity in my responses; I missed some comments and went back.)

Rachel,

You said: “Please take care about making generalizations based on the people you know.”

That’s a very important statement. For many of us, becoming informed starts with the people we know, but it has to go beyond that in order for one to become informed.

For me, it started with my children being diagnosed with autism and searching high and low to discover what that meant. Learning more and more, it made me question our perception of what my husband’s bi-polar disorder meant. That, in turn, made me question other learned assumptions I had about a variety of people with mental illnesses I’d interacted with over the years. Being informed requires a lot of research and a willingness to listen to the people who have been there and done that.

“In my opinion, people should speak for themselves, and themselves only.”

That I have a much harder time agreeing with. While I do not try to speak for others, I do use what I know from the experiences others have shared with me and what I’ve researched to address broader issues. If people did not develop expertise and use their expertise to inform others all we would have would be individual anecdotes and memoirs—which are valuable, but not exclusively so.

Gavin,

“It may be that in this case schizophrenia "excuses" this "bad behaviour" but if that is the case, doesn't it follow that schizophrenics need to be regularly checked to ensure that they are still on their medication - and that it's effective.”

It’s more complicated than that. Our society has, in the past, exerted a tremendous amount of control over people with mental illness because they were perceived to be dangerous simply because they have a mental illness. Forced institutionalization, force sterilization, abuse, torture. These events are real and they happened in “civilized” countries. We’re still not past that history.

At the same time, our social services for people with mental illness are inadequate. I’ve yet to read about a country that real provides these services well.

The solution you suggest would be, in my opinion, a step backward, infringing on hard won freedoms and rights. Which is not to say what we have now is working either—we have to balance individual freedoms and public safety without sacrificing either. I believe there is a step forward, but I don’t know of any country or state or city that has successfully made it yet. I couldn’t tell you what it will look like, but there are people in a lot of different areas trying to find the answer.

“It's all such a difficult question. As an aspie, I seek black and white answers and in this case there are none.”

And that’s a great step forward. Part of progress is admitting we don’t have the answer and that the answers we do have aren’t good enough.

Caitlin Wray said...

I think we are at odds Stephanie in our definitions of "choice". A schitzophrenic who is so ill they cannot adequately advocate for themselves and therefore have "settled for inadequate care" is not in my view, a person making a choice to be delusional or ill. They have had their ability to make good choices taken from them by a serious mental illness. The fact that they are deep in a delusional state cannot be "blamed" on their choices - it must be blamed on their illness. To me, your example is tantamount to saying a person with cancer who doesn't know how to recognize their symptoms and seek out care, is making a choice to die. I don't buy into that definition of choice.

Many schitzophrenics who choose to go off meds do so because of a combination of two factors: first, the meds are causing them UNBEARABLE side effects, and second, their ability to foresee the consequences of going off their meds is already significantly impaired by the mental illness they have in the first place (ie, they often do not believe they are ill in the first place - and it's the illness that is preventing them from seeing it - the most tragic of catch 22's). Is that really a "choice" by the definition that healthy people use? Not to me.

We will have to agree to disagree on the issue of "responsibility", but I am right there with you on the issue of maintaining the dignity and freedoms of those diagnosed with mental illnesses.

Caitlin
www.welcome-to-normal.com

Rachel Cohen-Rottenberg said...

What a great discussion! It's 96 degrees in the shade right now and I feel like my brain is melting, so I hope the following makes some kind of sense:

I just want to add that the dividing line between a neurological condition and a mental illness is not clear cut to many, many people. It's not unheard of for autistic people, especially women, to be initially misdiagnosed as schizotypal or some other variant. Autism is still in the DSM, which covers "mental disorders," and when you apply for disability in the US on the basis of autism, you are categorized as "mentally ill" rather than "neurologically disabled." I was misdiagnosed with depression and anxiety for decades until it became clear to me that the "anxiety" was actually masked CNS overstimulation and the "depression" was actually my need to shut down my senses in order to recharge. In other words, while I do become anxious and sad, it's because I'm autistic in a world that's difficult for me. No mystery there.

Moreover, I have a great aunt who died of TB in a state mental institution during the '30s at the age of 25. She was diagnosed as schizophrenic (which, at the time, was called "dementia praecox," or premature dementia), but from what I've gathered of her history, she was almost certainly autistic.

So I think it's very dangerous to try and create "us-them" categories when it comes to conditions, like autism and schizophrenia, that are commonly misunderstood and feared, and to talk about forcibly medicating or restraining people. I agree with Caitlin that we simply can't go back there. It should go without saying that schizophrenic people are far more often the victims of crime than the perpetrators, and that we really shouldn't be focusing on a very small and vulnerable minority of people when most of the violent crime is committed by so called "normal" folk.

Stephanie said...

Caitlin,

"We will have to agree to disagree on the issue of "responsibility""

Sometimes that's the best we can do--that and be thankful we're discussing the issue with someone else who can do that! ;-)

"but I am right there with you on the issue of maintaining the dignity and freedoms of those diagnosed with mental illnesses."

A lot of progress has been made, more much more progress needs to be made.

Rachel,

"So I think it's very dangerous to try and create "us-them" categories when it comes to conditions, like autism and schizophrenia..."

I agree. The distinction is not broadly perceived and to have those within these categories emphasize it is destructive to what I consider the larger goals.

The fact is that people with autism and ADD (neurological differences) face some of the same hardships as people with mental illness--fear, stigma, shame, inappropriate education and forced medication for the convenience of others.

Another thing is that since we know so little about what causes these differences we don't know how real the distinction is. I know less about schizophrenia in this regard, but the supposed causes that I've been exposed to of bipolar and depression and ADD and autism are all in the realm of theories at best and baseless speculation at worst. Perhaps someday we will find that at least a portion of the people who experience depression or bi-polar or schizophrenia or any of the other mental illnesses are neurologically different and would fare better with proper adaptations. I don't rule that possibility out precisely because of the history of autism.

spunkykitty said...

absolutely! i couldn't put in more - you've said it perfectly.

Being Nearly Human said...

Good discussion of the issues. It bugs me when people try to blame "Asperger's" for all kinds of behaviour problems, especially violent ones. While it may contribute to the conflict, it's not as if an "Asperger's Demon" jumps out and "makes them" commit crimes, and hurt people. It can be used to help understand someones motivations in a crime, but never as an excuse for a crime.

Owen said...

Lumping Gary McKinnon in with a couple of mass murderers..
And you've been doing so well up to that point. Shame.

Gavin Bollard said...

Owen,

I only "lumped" Gary McKinnon in with his present company because I couldn't think of anyone else quite so "infamous and yet not necessarily guilty" offhand.

I'm not suggesting that he's "the same" and in fact, I needed an example which was less extreme than a serial killer. Gary fitted the bill perfectly.

The post really wasn't intended to be about killers. It was supposed to be about general "bad" behaviour. In fact, I was thinking about husbands who just don't participate with their families when I wrote this.

Enjie said...

Your article give more information about aspergers symptoms. People with Asperger's need more empathy from us. They not sick, just need to understanding

Anonymous said...

Screw you.

-Someone with Aspergers

Anonymous said...

My sibling was just dx (she sought out Asp. expert) and now says he has it. Mid 50's. Been self-serving, narcissistic, selfish a-hole all his life, now he has justification!And he is so excited to go on ADA and not have to work a despised job like the rest of us. I don't buy it for one second, I am sorry! Even the DSM folks say it is radically overdiagnosed.

Anonymous said...

Hey - I am really glad to find this. great job!

Anonymous said...

I never thought my shopping .burnout could be sensory overload, but maybe it is.
Thanks for writing this

Anonymous said...

This was interesting. My best friend in high school always treated me so poorly and whenever I confronted her, she would bluntly say, "I have Aspergers. It's a license to do whatever I want." Eventually I cut contact with her in my adulthood because she refused to acknowledge her rudeness. Years later I met another girl with Aspergers who was so much nicer. I now know she really was just being flat out rude.

Anonymous said...

I know this is an old post but I cannot help but agree. I've never broken a law in my life, or even considered it, I was diagnosed with aspergers several years ago (before it was cool :P)

I actually had a woman whos son had stolen from the store I worked at try to excuse is theft on the fact he has aspergers.

If my supervisor hadn't taken over I probably would have been fired for the response I was ready to give.

irene petty said...

I recently began involvement with an Aspie. I feel he uses this as an excuse for exploiting me.

If he doesn't get his way with me he harrases me for an explanation. When I give the explanation he continues to say he is confused, promting more explaining, which i must do in the calmest and politest of manners. He will argue that my explanation is insufficient. After 2 hours of explaining I am exhausted. He pursues dominating all of my free time( or what he determines is my free time). I am supposed to be occupied with studies. I feel that the endless explaining is a way to draw me away from my tasks and satisfy his consant need for attention. If i give up explaining he drawls on and on about his aspergers preventing him from understanding things. He denies that he is invasive to my boundaries and claims innocently that he is only trying to love me. Yeah love me to death! And drain my finances and time!

Anonymous said...

I disagree with the bit about forcing your child to welcome visitors.

I can see your point, however, that would have triggered me. At the same time, explaining what would probably happen before the visitor came and explaining what to do in case I need to leave would give me the self-confidence to meet them and welcome them.

I have Asperger's. I'm a woman, 29 years old, and while I used to meet the diagnostic criteria when I was a kid, I don't think I meet them anymore because of how many issues I've worked through, *in my own time* (and of course my family had no idea Asperger's even existed, so it's not like they were helping me), so admittedly there probably are people with a smaller inner motivation to be able to communicate with others. I'm just describing how it wouldn't have worked for me, in fact, it would have had the opposite effect.

Moreover, I don't think anyone has to be polite. It's necessary to know how to be polite and to be able to freely decide if you're going to be polite or not.

Anonymous said...

Thank you for this post! I've just come across this. I've just started working with a primary school Aspergers child. They are violent, shout, scream and don't like not having their own way. And yet, they know exactly what theyre doing and know right from wrong.
I agree that some Aspergers children have their behaviour blamed on Aspergers when it clearly isn't. Of course there are those who can't help it and I'm not saying that that isn't true. It frustrates me when an illness is used as a cause of behaviour, when it may only be a very small factor if not related at all. I wish I could find a way to make this child I'm with behave, but it's proving so difficult :( got a long road ahead and I'm not sure I can do it :/

Thanks again for the post! I don't feel so alone now with my view.

Myrtone said...

Another question, does asperger's (whether exlpicitly or implicitly) excuse claimng (intellectual) high ground?

Anonymous said...

Myrtone said...
Another question, does Asperger's (whether explicitly or implicitly) excuse claiming (intellectual) high ground?

No. There are plenty of people who have Asperger's and have obtained Master's and PHD's. Check out this link of Colleges welcoming students with Asperger’s. http://www.mercyhurst.edu/files/learning-differences/philly-paper_may-9-2011.pdf

Anonymous said...

people with Asperger are dangerous look what happen at sandy hook schools. i have bipolar but violent crimes are commit by people with Asperger and other forms of autism

Gavin Bollard said...

Anonymous;

I weighed up my comments policy carefully before deciding to let you comment through.

I don't agree with it but I do believe that these things need to be discussed.

There are lots of characteristics of these type of killers. We could pick on any of them and make a case but it wouldn't necessarily make sense.

For example many are deeply religious. We all know what cold blooded killers religious people are - we've got years of evidence and millions of dead as proof.

Most of these killers seem to be white males. Does that suggest that we should stamp out the population of white males and stick to black women instead?

Most of the killers have used guns. Perhaps the guns should be removed?

No answer covers all possibilities and all profiles can be reversed.

Most of these killers have a disconnection with society.

Most people with aspergers have a disconnection with society.

It does NOT automatically follow that people with Aspergers are killers.

This is the same as saying all fish live in the water.

Dolphins live in the the water.

Therefore, dolphins are fish.

Clearly they're not.

Generalisations tend to lead us towards wrong answers.

Generalisations which victimise entire groups have a way of leading to genocide.

Rachel said...

It saddens me when people with different disabilities end up trying throw one another under the bus. In the autistic community, you often hear people say, "We're not school shooters! We're not mentally ill!" as though mentally ill people are somehow predisposed to mass murder. And now you've got someone on this blog who is bipolar saying that people with Asperger's are predisposed to mass murder.

We need to get together on the truth.

Fact: Most mentally ill people do not commit violent crimes.

Fact: Most autistic people do not commit violent crimes.

Fact: Mentally ill and autistic people are far more likely to be victims of crime at the hands of so-called "normal" people than so-called "normal" people are likely to be the victims of crime at the hands of mentally ill or autistic people.

One group stigmatizing the other doesn't help either of us, because the larger culture is perfectly happy to stigmatize both of us.

Anonymous said...

My lover is an Aspie. We are on again/off again because he gets very reclusive and also very angry when I ask him to pay attention to me more than once a week. He is also online constantly and it's more important to him than I am- certainly online gets his attention 6 days a week, I get less than 24 hours a week. Right now, he is shut down and completely ignoring my one week attempt to sort out and smooth over a misunderstanding. He will eventually say he was overwhelmed and couldn't deal with it but I think he's just being intentionally cruel. It's four days before Xmas eve and he won't even soften up to work out our problems before Xmas. Bad behavior for sure which he will excuse as downtime. It's frustrating and devastating for me cuz I adore him and he can just shut me out for days/weeks/months at a time as if I no longer exist. When he comes back, he's all loving like all is forgiven/forgotten but then when he gets angry again, it's just weeks of no contact from him no matter how much I beg. Hurts.

Anonymous said...

Finally DSM 5 has punctured the Aspie balloon. No more EZ excuses for bad behavior. No more hiding behind a phony diagnosis, to explain away the sometimes dangerous and often obnoxious actions of people who don't recognize anyone's feelings but their own.

ASPIE123 said...

My 11 year old nephew was diagnosed with high functioning aspergers. He has violent tendencies toward my 7 year old son, and he is very competitive with him also. I try to understand and accommodate as much as I can, but when is the line drawn between bad behavior and autistic behavior? I feel like it has been used for years to excuse his bad behavior. Its to the point where I don't want my son around him. Am I being too harsh? I don't think this is something I can just deal with any longer. This behavior goes on in school also. He has been suspended and expelled from numerous schools for this behavior. Is the only answer that I need to keep my son away from him? Please help.

Anonymous said...

what is wrongful behaviour? Is it only wrong if the individual in question intends it to behaviour in a harmful or hurtful way? Is a punch in the face ok if a friend does it to you or is it only OK during a boxing match? What are we excusing? The behaviour, the outcomes, the specticale? My primary school aged son has AS, personally I will not allow my son to use his AS as an excuse/explaination for anything at all...I do however encourage him and support HIM to learn about AS, the effects it CAN have on him and his behaviour and WHAT he can do about it. As parents of children who often draw negative attention from others (often people WE want to impress, our kids couldn't care less)we feel the pressure to explain why WE as such "wonderful people"have children who behave in such ways. In my experience it is often ones own embarrasment or shame that causes AS mums and dads to excuse away...! We need to accept our children as they are, love them and teach them right from wrong...violence and aggression are WRONG ...lets not make any more excuses and help our children learn this. Stop worrying about yourselves and help YOUR children stay safe and happy.

Anonymous said...

So true! I have an adult Aspie in my life who tends to lie and manipulate people to get what he wants. ANY attempt to correct his behavior is met with either a defiance and an outburst or with a shutdown and a refusal to speak. Unfortunately, he has found several enablers to approve and validate his bad behavior every time. He says that others are 'mean' to him and 'bullying', and then plays the poor, pitiful disadvantaged boy routine. It works on his enablers. They pity and protect him. But I don't let that stop me from speaking out against some of his bad/abusive behaviors. Nor should anyone who has an aspie in their life. True love gives them strong boundaries and helps them overcome their limitations, it does NOT enable and let them remain in their dysfunction.

Anonymous said...

I am being made ill by my husband of almost 19 years. He has high functioning autism. He lies and twists everything to his advantage. As a doctor he thinks no one is as clever as him. He is making me so depressed. He argues and wants reasons for every little thing. He doesn't enjoy conversations unless it is about something he is obsessive about and he doesn't acknowledge how cold his behaviour is. he has got us into financial problems 4 times in a row. He is working again now but we are still not getting anywhere because he is so rigid about everything. I have physical disabilities and in the past I put up with years of insufficient care because of his "decisions". All I want is out! I feel so trapped. Why can't he see how he is making me feel? He never accepts he is responsible for any problem - but just agues the point. I have tried so hard but now I just wish I had somewhere to go to get away from him or that he would leave and make my life easier. I have asked him to leave enough times. He just thinks I should be happy to stay in this torture and says it is illogical to part because there is our home to think off. I just want a life - freedom before it's too late. The author of the article is obviously aware of his challenges and is really trying to keep his relationship a live and well and show's his wife respect and kindness and love. Good luck to you both! I hope you go from strength to strength. My husband can't see how emotional cruel his behaviour feels!

Gavin Bollard said...

Anonymous, I am sorry that you are going through such pain with your husband.

I guess my points here are simply that having Asperger's does not mean that someone lacks empathy or can't be supportive or can't change. Usually it means that communication has to be a little different and that a person needs to be taught how to give their loved ones what they need.

In the end though, all people are different and just because someone is capable of learning to be a good partner, it doesn't automatically follow that they will be willing.

Sometimes these things work out and sometimes they don't.

Anonymous said...

In general I am tired of people hiding behind labels to excuse poor behavior, poor attendance, etc. The more we enable these behaviors the more we really do make someone disabled. A legitimate learning issue or diagnosis requires a strategy to advance; real help that teaches or guides on how to address obstacles...colleges/universities do students a great disservice is this regard. Giving a letter from the disabilities office is not going to do anything other than give more time on a test or quiz. Most students just love a label so they need not really accept challenge...we need to teach grit.