28 February 2006

"Autistic like me"

Is it possible for non-autistics to truly understand what it means to be autistic? Can we really grasp the major effort that it takes to do the things that we take for granted? I think the answer to these questions is an unqualified, “No.”

If you’ve not read On fitting in – a response from ballastexistenz to my recent post On being different – please take a look. The post provides an insight into what it must mean to be autistic that those of us who are not autistic can only pretend we understand. (Another excellent post from her is On (not) being considered a woman.)

Here is what ballastexistenz has to say on how the world treats her:

I could and have for instance just by looking the way I do get sent to the emergency room and given drugs that I have life-threatening allergies to.

The way I look doesn't just get people looking at me funny, it gets people trying to figure out what group home I got out of and surrounding me and detaining me and doing other unpleasant things to me.

It means that I have to have someone with me who looks "competent" just so that I will be seen as being "supervised" even if I don't need "supervision".

It is dangerous for women to walk outside alone in some places (not where I live, but where I used to live) but that is not accepted the way the danger to me is accepted.
Is it possible for non-autistics to truly appreciate what autistics experience as they interact with the world around them? I think the answer here may be, “Yes, kind of.”

Many years ago (too many) in high school I read John Howard Griffin’s Black Like Me, in which he details his experiences as a black man in the Deep South. The catch here, in case you’re not familiar with the book, is that Griffin was a white man who changed his appearance (through hair cuts, medicines, and skin coloring) to become a black man.

More recently, actresses in “fat suits” have done something similar, going out in public and observing how they are treated. I remember an interview with Gwyneth Paltrow when she was filming “Shallow Hal” where she said she was brought to tears by the way she was treated when in costume away from the movie set.

Several actors/actresses have portrayed autistics in a wide range of movies, from Dustin Hoffmann in “Rain Man” to Leonardo DiCaprio in “What’s Eating Gilbert Grape” to, most recently, Sigourney Weaver in “Snow Cake.” But they did not have to experience the negative treatment of society, mainly because too many people know who they are and would know they were just ‘acting.”

What kind of experience, what kind of insight, could a non-autistic person gain by “passing” as autistic? More importantly, what kind of insight could a non-autistic person who did this pass along to the rest of us? And would we listen?

From the wikipedia entry for Black Like Me:
Because communication between the white and black races was particularly strained at the time of the book's writing, neither race really knew what life was like for the other. Griffin felt that the only way for a white man to know what blacks experienced was to become a black man and then travel through the South.
To understand someone, walk a mile in their shoes….

tagged as: Autism, Asperger's Syndrome, Black Like Me, John Howard Griffin, Fat Suits

Achievement carries no timetable

In No Pessimist Ever Discovered the Stars, Estee Klar-Wolfond takes a moment to discuss her journey so far with autism. I think many parents of autistic children will find familiarity in her experiences, especially in this little bit:

Over time, in researching autism and running my son's team as my full-time job, I stopped listening to the “experts” and turned to people with autism. It is through them that I am at a wonderful place on this journey – learning to absorb, live with, and continue to try and understand autism perspectives.

I have come to view it as another marvelous way of being and I believe this benefits Adam and my entire family. Adam continues to learn as we respect his many needs. I believe he could have become aggressive, banged his head – and he might if he meets the wrong teacher. I know that it is because we acknowledge his frustrations and help him through them that he is a “well-adjusted” kid – he seems to be developing good sense of self and a healthy attachment to me.

There were signs early on that this could have been quite a different scenario. Had I listened to the experts, we would not be at this point today.
Estee then goes on to provide 10 lessons she has learned along the way. Check them out.

(btw - the title of this post comes from #8 on her list)

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27 February 2006

My dogs are jealous of my computer

I recently received a copy of Temple Grandin’s latest book, Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior, to review. I’m about a third of the way through, and will post a full review once I’ve finished, but I wanted to write about an “ah-ha” moment that came after reading one of the early chapters.

I spend a lot of time at the computer; basically all day, and sometimes into the night. Occasionally the dogs (two big Old English Sheepdogs) will be in the house and come into the office to keep me company. They’ll come in, ‘let’ me pet them for a while, and then lie down and relax. If I’m reading, talking on the phone, or leaned over the desk writing (with pen and paper), they are content to lie around.

As soon as I pull out the keyboard drawer and start typing, however, they invariably get up and come running over to the desk. They take turns sticking their heads in between my hand and the keyboard. Sometimes I’ll have one on each side of me.

At first, it irritated me. Now it amuses me, and I’ll pet them for a few strokes before shoo-ing them away so I can type. But I couldn’t figure out why they did it. Until now.

I think that my sheepdogs are jealous of my computer, more specifically the keyboard. When I pull out the keyboard and start typing, I believe that they think I am “petting” the keyboard!! Their behavior is exactly the same as if I were petting one of them and not the other. They always jockey for top position in getting there head scratched, and I think they are just trying to prove their ‘dominance’ over my keyboard.

From my perspective, their behavior is confusing. From their perspective, it is perfectly reasonable. In fact, from their perspective my behavior is probably confusing.

A lesson, I think, that applies to interpersonal interaction as much as interspecies interaction.

tagged as: Autism, Asperger's Syndrome, Animals in Translation, Temple Grandin, Old English Sheepdogs

26 February 2006

Indulge your (kids) obsession

Indulge your (kids) obsession

I spent Saturday afternoon this weekend at a Yugi-oh regional tournament with my younger (non-autistic) son, who is 13. Though he was not the youngest duelist there, he was one of a handful of kids under 15 in a group of 80+ duelists. (In case you’re not familiar with Yugi-oh, participants are duelists, not ‘players.’) The ages ranged all the way up to 40+, with the bulk of them in their late teens through early twenties. All duelists were male, save one.

I have the feeling that if you were to observe many of these guys in a ‘normal’ environment – say your local high school – your first impression would be “outcast,” “nerd,” or something similar. They have long unkempt hair and a preference for black t-shirts. They keep to themselves, or a small group of like-minded friends. They are not the ‘social butterflies’ that seem to be demanded in that environment. In a word, they would appear to be “non-social” (ok, maybe that’s two words *-).

Put almost a hundred of them in a room together at a tournament where everyone is trying to prove they are the best duelist in town, though, and what you get is a room full of ‘social butterflies.’ As duelists finish their match, they congratulate each other on a match well played. They walk through the room, soaking in what others are doing. In between rounds, they seek each other out, talking strategy, asking about the cards they have (Yugi-oh is what they call a Trading Card Game). It doesn’t matter if you are good are bad, new or experienced. The only thing that matters is that you are interested (I should say obsessed) with the game.

The thing is, many parents I know don’t understand – and thus discourage – their kid’s obsession with this and other similar games. These parents can’t grasp the hours and hours their kids spend learning each card’s abilities, their strengths and weaknesses, how they can be used together, and how they can be used in response to an opponents actions, or the many more hours (and $$$) spent acquiring and sorting through cards to build the perfect deck. And of course, the many many hours spent practicing by dueling with friends, or in solo practice.

Wait a second. Those things sound an awful lot like what most kids go through when they find their obsession. Take a sport like football. Kids spend hours learning playbooks. They spend hours after school every day of the week at practice, sometimes on the weekend. They gather for games in the hope of proving they are the best. It’s just that these ‘obsessions’ are ‘mainstream’, so their parents proudly refer to them as their children’s ‘passions’ or ‘talents.’

Luke Jackson said it best (I’ve quoted this before, but it seemed worth repeating):

Q: When is an obsession not an obsession?

A: When it is about football.How unfair is that?! It seems that our society fully accepts the fact that a lot of men and boys 'eat, sleep and breathe' football and people seem to think that if someone doesn't, then they are not fully male. Stupid!

Girls are lucky enough to escape this football mania but I have noticed that teenage girls have to know almost every word of every song in the charts and who sang what and who is the fittest guy going, so I suppose an AS girl (or a non-AS one) that had interests other than that is likely to experience the same difficulties as a non-football crazy boy.

I am sure that if a parent went to a doctor and said that their teenage son wouldn't shut up about football, they would laugh and tell them that it was perfectly normal. It seems as if we all have to be the same.
Though I hate to engage in arm-chair neurology, I’d be willing to bet that if these duelists were ‘evaluated,’ quite a few of them would show up on the autism spectrum, likely as Aspies. That is, if they were evaluated in the general context that those types of evaluation are done – against the ‘norms’ of society today. Conduct their evaluation in the context of their world, the world in which they can indulge their passions, and I think they would show up as perfectly normal (whatever the hell that means).

In my thinking over the last week or so on what it means to be different, I seem to keep coming back to the same point over and over: it’s not our kids that have a problem; it’s the world they must live in that has the problem.

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22 February 2006

On being different

Our differences are to be celebrated. Just look at Apple Computer's Think Different campaign. It is through our differences that we as a society grow. At the same time, it is our similarities to one another that allow us to continue to exist as a society.

Since posting Disabled? Or Different? a few days ago, I've been thinking more about what it means to be different in the world today. Wade Rankin has helped me focus these thoughts with this excerpt from his post Our children are smart. Now what?

[She] correctly argues that autistic individuals should not be forced to think or act like so-called “normal” people. Nevertheless, the human race has a social construct that favors those that are able to use their individual gifts in ways that benefit society as a whole. We may struggle to change the negative views that have traditionally been assigned to autism, but humankind’s basic social nature will not change. Even for someone like [her], who has overcome adversity and prejudice to a remarkable extent, making a contribution is not easy.
No one should be forced to act "normal", but the fact is those who don't will always be isolated somewhat from society. If I walk down the street and turn a circle every couple of steps, people are going to avoid me. No one's forcing me to walk a straight line down the sidewalk, but if I don't then I must be willing to accept the consequences.

I agree wholeheartedly that society needs to learn to be more accepting of those who are more than just a little different, but at the same time I think those who choose to be different (is that flame-bait, or what?) need to be more accepting of the "normalness" of the world around them and realize that if they want that world to accept them they have to at least make an effort, no matter how small, to "fit in."

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Accomodation and tolerance are two-way streets

As we all know, there is a lot of talk about accomodation and tolerance of people's differences. It seems to me, though, that most of the accomodation/tolerance being preached is one way: That person/culture is different, so you should be accepting of those differences and accomodate them.

We all tend to look at things through our own lens, focusing those things that matter to us while de-focusing those things on the periphery. We all expect others to be 'tolerant' of our way of doing things, but don't always recognize that others expect the same from us. Of course, this can be taken to the opposite extreme.

I remember a conversation in a business class I was taking related to negotiations. At the time, the US and UN were trying to get Iraq to comply with weapons inspections. Secretary of State Madeleine Albright was the chief negotiator. One of my classmates made a comment along the lines of, "The Arabs don't respect the role of women in this kind of situation. We should send a man to do the negotiation so we don't offend them." My eyes bugged out and my jaw dropped to the floor. What?!?

Consideration for others goes both ways. It doesn't matter who is "right" or "wrong", or who is "privileged" or not. If you expect others to accept you, and tolerate you, you need to be willing to accept and tolerate them.

10 February 2006

Planning for the future: Special needs trusts

I've written before about the need for parents to think about the future for their autistic children. (See, for example, Support and Services for Autistic Adults, Planning for the future: Reality check for parents..., and It's never too early to start planning for adulthood.)

The more I learn the more I realize I don't know nearly enough, so I take every chance I can to learn more. A program being offered by the St. Louis County Special School District is helping me along that path.

Entitled Dealing with My Greatest Fears, this three-part workshop is designed to provide information to students and their families about the transition process and issues that cause anxiety for parents when planning for the post-school years. Families will get the necessary information to put in place a comprehensive transition plan. Last night I attended the first session:

Session 1 - Feb. 9 — SSI, Estate Planning and Guardianship

This session answers, “What will happen to my son or daughter if I am not here?” and addresses issues of guardianship, estate planning, SSI/government assistance and long-term planning.
For this post, I'm going to focus on the estate planning topic, I'll try to provide some thoughts on the guardianship and SSI/gov't assistance topics later.

The estate planning topic was presented by Gerald Zafft, a principal at Blumenfeld, Kaplan & Sandweiss, P.C here in St. Louis. He first learned about the need for special needs trusts, as he put it, "the hard way" (Gerry has a now 35 year old son with Down Syndrome and has been involved with the Midwest Special Needs Trust (formerly known as the Missouri Family Trust) since its creation nearly 15 years ago.

Some key thoughts from his briefing materials and presentation (emphasis his):
The first consideration for planning is to determine the needs of the beneficiary (in our case, our children). Planning should take into account the needs of the beneficiary now and in the future, especially what the needs will be for supplemental income after hte parents' death. Resources of such plannign are available from the Arc of the United States.

The second major consideration is to identify the source of funds for the trust and how and when these assets will be transferred into the trust. Many types of assets can be used to fund the trust, including cash, property, stocks and bonds, certificates of deposit, and life insurance policies.

A special needs trust enables assets to be held for an individual with a disability without negatively affecting eligibility for government benefits. First created in the early 1970's, Social Security Administration regulations now govern them. Trusts which meet the SSA regulations are not counted as a resource for determiniation of eligibility for SSI or Medicaid.
A lot of things to consider, many more than I can cover here. The Midwest Special Needs Trust site has a wealth of information, as well as links to many other resources. Many, many things to consider and plan for.

If you live in the midwest, I also encourage you to check out the services the MSNT provides.

Bottom line, as I've said before, it is never too early to start thinking about this.
- - -- --- ----- --------

If you are interested, the next two sessions in the Dealing with My Greatest Fears workshop are:
Session 2 – Feb. 16 — What Happens After Graduation

Session answers, “What will my son/daughter do once they have graduated?” and addresses the vocational, post-school enrichment programs and recreational/leisure options available to students after school.

Session 3 – Feb. 23 — Getting the System to Work for Me

This session answers, “How do I get the system to work for me? And addresses the many issues involved in working with the system to access quality, post-school programming.
If you live in the St. Louis area and are interested in attending, you can call 314-989-7807. There is also on-line registration for SSD programs*, but this one is no longer listed. (A lot of other good stuff coming up, though.)

* Be warned, this registration site only supports Internet Explorer.

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07 February 2006

Disabled? Or different?

I started a draft of this post several months ago, but just couldn't quite get my thoughts together on exactly what I wanted to say. This morning I came across Is Asperger’s syndrome/High-Functioning Autism necessarily a disability?, presented by Simon Baron-Cohen in January 2000, which presents the case for viewing AS/HFA as a difference, not as a disability

Here is the abstract [emphasis is mine]:

This article considers whether Asperger Syndrome (AS) or high-functioning autism (HFA) necessarily lead to disability or whether AS/HFA simply lead to 'difference'. It concludes that the term 'difference' in relation to AS/HFA is a more neutral, value-free, and fairer description than terms such as 'impairment', 'deficiency' or 'disability'; that the term 'disability' only applies to the lower functioning cases of autism; but that the term 'disability' may need to be retained for AS/HFA as long as the legal framework only provides financial and other support for individuals with a disability. Two models are summarized which attempt to define in what way individuals with AS/HFA are 'different': the central coherence model, and the folk psychology-folk physics model. The challenge for research is to test the value of such models and to precisely characterise the differences in cognitive style.

We have grown familiar with the idea that autism is a 'psychiatric condition', a 'disorder', a 'disability' or a 'handicap'. Ever since Kanner's description of the 'aloneness' of these children , psychiatry has labelled and categorised them as abnormal, ill, and deficient. Through the changing definitions of autism enshrined in successive editions of both DSM (Diagnostic and Statistical Manual, published by the American Psychiatric Association) or ICD (International Classification of Diseases, published by the World Health Organisation), we have had a single view of autism thrust upon us: an essentially negative view in which children or adults with autism are characterised as 'impaired' .

This article challenges the received view through a subtle but important shift of emphasis. Rather than conceiving of autism as a deficiency, it instead considers if autism might be better characterised as a different cognitive style. This important idea can be traced to Uta Frith's book , and has been recently discussed in relation to 'central coherence' theory , but deserves a fuller discussion because of the massive implications of this shift of emphasis. Using the term 'different' rather than 'deficient' may seem unimportant (after all, both words begin with 'd', end in 't' and have 7 letters in between). But this small shift could mean the difference between whether the diagnosis of autism is received as a family tragedy, akin to being told that the child has some other severe, life-long illness like diabetes or haemophilia, or whether the diagnosis of autism is received as interesting information, akin to being told that the child is right or left-handed. In this millennium special issue of Development and Psychopathology, the intention is to highlight this as an issue for the agenda.
And the summary:
In a world where individuals are all expected to be social, people with AS/HFA are seen as disabled. The implication is that if environmental expectations change, or in a different environment, they may not necessarily be seen as disabled. As we have known in relation to other conditions, concepts of disability and handicap are relative to particular environments, both cultural and biological . It may be time to extend this way of thinking to the field of AS/HFA. We could imagine, for example, people with AS/HFA might not necessarily be disabled in an environment in which they can exert greater control of events. The social world is very hard to control, whilst the technological world of machines is in principle highly controllable. Equally, people with AS/HFA might not necessarily be disabled in an environment in which an exact mind, attracted to detecting small details, is an advantage. In the social world there is no great benefit to such a precise eye for detail, but in the world of maths, computing, cataloguing, music, linguistics, craft, engineering or science, such an eye for detail can lead to success rather than disability. In the world of business, for example, a mathematical bent for estimating risk and profit, together with a relative lack of concern for the emotional states of one's employees or rivals, can mean unbounded opportunities.

It is hoped that this article, at the dawn of the new millennium, will open the debate towards identifying if there are any arguments for necessarily viewing AS/HFA as disabilities. In this article, none are found to apply persuasively to AS/HFA, even if they may apply to the 'lower-functioning' cases. In contrast, the arguments in favour of viewing AS/HFA as a 'difference' are more compatible with the 'continuum' notion, and may be morally more defensible. The sole reason for retaining the term disability in relation to AS/HFA may be to ensure access to provision; it may be the legal system that needs revision, so that a child whose autistic 'difference' leads them to have special needs, will still receive special support.
I encourage everyone to read the full article.

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06 February 2006

Enjoying the scenery

Sometimes our kids surprise us. We try and try and try to get them to do something, understand something, say something. They go for a long time, apparently ignoring (avoiding?) all of our best attempts. Then, all of a sudden, when we aren't really looking (or when we've kind of given up), the do it, understand it, say it.

At those moments we feel good, not just for our kids and their accomplishments but for ourselves. Sometimes it is hard to put in the long hours, day after day, never quite knowing if it will pay off or not. This is especially true for the parents of autistic kids. But what can you do?

Here is a quote from George Leonard's The Way of Aikido that struck a chord with me as I've been thinking about parenting and autism.

What we call "mastery" can be defined as that mysterious process through which what is at first difficult or even impossible becomes easy and pleasurable through diligent, patient, long-term practice.

Most learning occurs while we are on the plateau, when it seems we are making no progress at all. The spurt upward towards mastery merely marks the moment when the results of your training "clicks in."

To learn anything significant...you must be willing t spend most of your time on the plateau. [T]o join the on the path of mastery, it's best to love the plateau, to take delight in regular practice not just for the extrinsic rewards it brings, but for its own sake.
Another way of looking at it comes from a saying I heard a while back, but can't remember where:
A truly happy person enjoys the scenery on a detour
How's the scenery on your detour?

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03 February 2006

It's never to early to start planning for adulthood

From the article Web site debuts to help disabled make transition:

While in public school, students with disabilities have individual education plans designed by parents, their class- room teachers and professional teams that include a psychologist. The plan is renewed annually, and the final plan is supposed to include a transition plan.

But the shift after school still is a jolt to many....

'... the reality is, you have to take the initiative,' Lund said. 'You have to understand it on your own. This [Web site] will be one more tool.'
I've emphasized what I think is the key point here: There are plenty of people and organizations out there that will help you plan the transition, but no one is going to do it for you.

It's never too early.

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In support of the Northern Ireland Autism Act

I'm not exactly sure what the Northern Ireland Autism Act entails, but I really like what supporter Robert Coulter has to say in support of it:

There is a place for people with ASD in society and they must have their worth recognised and their rights guaranteed. They are not mentally ill people and they have a tremendous contribution to make.

If we fail as politicians to deliver this Act, if Autism Northern Ireland fails to generate the necessary lobbying in our community, then the NI Mental Health and Learning Disability Review could condemn thousands in our community to a life of uncertainty and increased stress for their loved ones.
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02 February 2006

The words we use make all the difference

How we describe things, how we label them, makes all the difference in how what we are trying to describe is perceived.  Sometimes how we label and describe things we are in favor of is meant to portray opposing views in a negative light (just look at the terms used in the abortion debate: pro-choice vs. pro-life).  

Have you ever heard of dihydrogen monoxide?  Should you have?  Here are some facts:

  • Dihydrogen monoxide is colorless, odorless, tasteless, and kills uncounted thousands of people every year.

  • Most of these deaths are caused by accidental inhalation of DHMO

  • Prolonged exposure to its solid form causes severe tissue damage.

  • Symptoms of DHMO ingestion can include excessive sweating and urination, and possibly a bloated feeling, nausea, vomiting and body electrolyte imbalance.

  • For those who have become dependent, DHMO withdrawal means certain death.

What is this horrible, lethal substance?  Why hasn’t it been banned by the government?  If you remember your high school chemistry, you have already figured out that dihydrogen monoxide is nothing more than plain old H2O – water.  But spin it the right way, and it is B-A-D bad.

What is your initial reaction when you read these symptoms?

  • Lack of abilility to spend time in the company of oneself for a long duration

  • Preoccupation with being with others, especially in social events

  • Preoccupation with oneself, one's career, one's material and physical image

  • Preoccupation with one's social status, fame and income

Or this description of life from someone who ‘suffers’ from this syndrome:

  • I do too many things and don't really focus on one. Instead of just focussing on one thing at a time, like I would like to do, I try to do too many things and it seems like I've got it all figured out, but I really don't. "Inability to focus intensively on one interest," is a definite symptom.

  • Judgement. I judge everyone. I judge based on whether you are like me or not like me. I expect everyone to blend together, to homogenize. If there is any difference, I become afraid and have to send that different person away. "Persistent intolerance of others," is another symptom.

  • I am highly impatient. I guess that's why I don't really think that hard about anything. It takes up too much time when I have to get my hair done. Not to mention impatient with others. I don't have time to listen to your bla bla!

  • I take things for granted. Um hum. Big time. I don't take time to "smell the flowers" or watch the rain fall... Who has time? I need to stand in line at Starbucks while I'm rushing to get to work!

  • It says in this manual I read today, that " there is also a strong fascination for social belonging to the point of chronic lying...In most cases, there is an associated diagnosis of depression, substance-related disorders, sedative dependence, and other behavioural symptoms including inability to listen carefully to others, difficulty with empathy, and a deep fear of heterogeneity."

Sound like anyone you know?  You, maybe?  The symptoms are, in fact, of “Neurotypical Syndrome” as identified by Estee in a thought-provoking post of the same name.

In the same way I believe that the words we use to describe autistics are unnecessarily negative.  Are there negative aspects to autism and Asperger’s?  Absolutely.  Is that all there is to people diagnosed as such?  Absolutely not.  

I’ve been told many times through the years that perception is reality.  If you perceive a thing negatively, it will have a negative influence on your life, on your reality.  If we perceive autism in our children as only a negative, a bad thing, then that is how it will play out in our lives.  

If, on the other hand, we can see the positives – of course while acknowledging the negatives – the impact on our lives will be correspondingly positive.  

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