Whose Planet Is It Anyway?: One book...

Wednesday, August 30, 2006

One book...

Redaspie tagged me to write a meme about books, which seems just the thing for a quiet, dreary evening when (oh, the barbarian shame of it!) I haven't been to the library recently and have no good books to read at the moment.

One book that changed my life

I thought about this for quite some time, and I'm not sure I have a good answer. My life has been shaped and molded in many ways over the years by thousands of books, but I've never had a conversion experience or anything like that, and I can't pick out one specific book as a defining moment. There are two broad categories of books that had a major influence on my life as I was growing up: Biographies of autistic scientists and inventors, which taught me that it was OK to be eccentric and to obsess over one's work, and stories about people who struggled against oppression, such as those who helped runaway slaves, resisted the Nazis, and so forth. Growing up in quiet suburbia, I was foolish enough to think that all the great struggles for freedom and civil rights already had been fought and won. How little I knew.

One book that you've read more than once

When I was a child, I often read books more than once. They were my good friends and my companions in adventure. I had a set of illustrated children's encyclopedias, which was always good to wander through. One of my favorite entries was about a volcano that suddenly emerged from a cornfield in Paricutin, Mexico, sending the terrified villagers fleeing. Sometimes, instead of paying attention at school, I looked longingly out the classroom window in the hope that a volcano would pop up out of the parking lot and save me from the tedium. Alas, no such luck.

One book you'd want on a desert island

I'll give this one a logical aspie answer—a book of practical survival skills.

One book that made you laugh

When I'm in a mood for a good laugh, I'll read books of comic strips, such as Calvin & Hobbes.

One book that made you cry

The Bean Trees by Barbara Kingsolver. Actually, just about anything by Barbara Kingsolver. She has a wonderful ability to create believable characters and situations from the smallest details of everyday life, and she gets the emotional nuances just right.

One book you wish you had written

I've never wished to have written any particular book, although I spent a lot of time as a child wishing that I could be my favorite characters in books.

One book you wish had never been written

The Diagnostic and Statistical Manual of Mental Disorders, in all its various editions. 'Nuff said.

One book you're currently reading

I'm not currently reading any books. I've been spending too much time reading blogs instead. Bad me.

One book you've been meaning to read

Foucault, Madness and Civilization. It's a history of psychology as a tool of social oppression. I've read various discussions that mentioned it, but I never got around to actually reading it.

People to tag

I'll go with Joseph, Kassiane, and Mum is Thinking. (No offense intended to anyone not mentioned!)

Thanks Redaspie. :)

Labels: blogging

59 Comments:

...One book you wish had never been written

The Diagnostic and Statistical Manual of Mental Disorders, in all its various editions. 'Nuff said....

Ther are 13 pages in the DSM -IV on Pervasive Developmental disorders, autism, Rett's syndrome, and Asperger's, out of almost 900 pages. The rest covers an entire spectrum of well documented and real mental, neurological, and psychophysiological disorders. Do you only disagree with the part that applies to you, or the whole manual?

Either way, not 'nuff said. Why?

Behavior analyst

By Anonymous, at 11:51 PM
Oh, I like your list!
I'm going to read some of those books about great men and women who were autistic, to my children.

I love your comment about wishing for a volcano to pop out by your school, 'Alas, no such luck.' LOL!
That puts such a great picture in my mind!

I notice one of the categories is 'one book you wish you'd written'. When I was tagged, it was 'one book you wish would be written' which makes no sense. Your version is better!

By Sharon McDaid, at 5:32 AM
Behavior Analyst: That's a fair question. I disagree with the concept that there is such a thing as "normal brain development" and with categorizing the hundreds of millions of people whose brains naturally develop in other ways as "disordered." In my view, that's not much different from saying that anyone whose skin isn't white has a disorder. Our society understands and respects other kinds of diversity in human development -- why not diversity of thought?

Sharon: I remember reading about Archimedes, Marie Curie, and Einstein, among others. They weren't described as autistic in the books, but as people with great curiosity and a passion for their work.

By abfh, at 8:23 AM
...I disagree with the concept that there is such a thing as "normal brain development" and with categorizing the hundreds of millions of people whose brains naturally develop in other ways as "disordered." In my view, that's not much different from saying that anyone whose skin isn't white has a disorder. Our society understands and respects other kinds of diversity in human development -- why not diversity of thought?...

From your own philosophical standpoint, your arguement is fairly logical. but from an adaptive-biological perspective, you are way off base. As I have said in other posts, culture and society should accomodate those with differences, but at what point do you allow those differences to impede on the safety, wellbeing, and quality of life of all others? Do you feel that the man who drove the SUV through crowds in San Francisco the other day and killing and injuring them should be respected for his "diversity of thought"? How about the woman in Texas who drowned her 5 children? John Hinkley? Charles Manson? I could go on for years...

You obviously have some personal issues with the classification of people with ASD, and that is fine, but I think you are overgeneralizing when you include all other forms of psychiatric disorders, especially when those disorders clearly cause a great deal of personal distress to the people who suffer from them, and to the rest of society. The DSM-IV is an invaluable (albeit imperfect) tool for clinicians and clients, allowing open communication, understanding, and collaboration between the people who have those disorders and their caregivers. Without it, mental healthcare would be in a much worse state.

Behavior analyst

By Anonymous, at 3:02 PM
"Growing up in quiet suburbia, I was foolish enough to think that all the great struggles for freedom and civil rights already had been fought and won. How little I knew."

I don't think *any* of the civil rights struggles have been won. Women are still treated unequally, homophobia continues to rum rampant, and the fate of the black people of New Orleans after Hurricane Katrina and the current wave of Islamophobia in the West is final proof that racism continues to exist *and* to be exploited by the ruling classes for their own purposes.

By Redaspie, at 3:12 PM
Joseph: As I recall, you suggested some time ago that the DSM-IV should be replaced with a "Neurodiversity Manual" that would describe various configurations of the human brain, using neutral and nonjudgmental language. I agree with you that such a book would be helpful for understanding differences in behavior, while avoiding the stigma and prejudice that exist at present.

Behavior Analyst: Your inflammatory reference to mass murderers is just another straw man argument. How does the DSM-IV assist the criminal justice system in preventing murder or punishing criminals? It doesn't. Trying to explain criminal behavior in terms of psychological labels does nothing but hinder justice when premeditated killers like Karen McCarron plead not guilty by reason of insanity.

By abfh, at 4:10 PM
...Your inflammatory reference to mass murderers is just another straw man argument. How does the DSM-IV assist the criminal justice system in preventing murder or punishing criminals? It doesn't...

I did not mention one mass murderer. Hinkley shot two people, both survived. Manson never killed anyone, but he convinced others to do it. The SUV guy killed one person, and the Texas lady commited 5 counts of infanticide, so she comes close. All of them have been determined to have some form of DSM-IV disorder, and all have been removed from society. None are quite on par with Hitler, Pol Pot, or Gacy, huh?

The DSM-IV empirically identifies labels behavior patterns that in many cases are historically known as precursors to dangerous acts. By treating people with paranoid delusions, you significantly reduce the likelyhood that they will act out in delusional self defense. You may also prevent mentally unstable people from taking their own lives while they are in a state of altered consciousness due to temporary neurotransmiter imbalance, or is allowing that to happen "OK" in terms of celebrating neurological diverstity? I call "bull" on that.

...It contains a list of phenotype classifications. Labeling those are "disorders" is opinion and a cultural construction, no more valid than labeling left-handedness or homosexuality a disorder. (Incidentally, homosexuality was well documented and real there until 1973)...

when the majority members of a culture or society reach a consensus agreement on what you refer to as an "opinion" (Redlight=stop, green light=go, people who are excessively sad are suffering from "Depression", etc.)it becomes a social norm. I know y'all hate the concept of "norms", but it is what it is.

So a person with Alzheimer's disease is just a "phenotype" to you? They are a human being in need of support and care to me. I am well versed on the issues of the social construction of mental illness, having read tons by Torrey, Szasz, and Laing. And while I agree with the problems inherent in the psychopolitical realm, my 28 years in mental health services tell me that for a vast number of people these problems are real. Mental illness (or "neurological diversity" and phenotypes, as you call it) causes great distress to the majority of people who experience it, and I have only met a very few people who have actually stated that they would prefer to be living with mental illness than going through treatment and taking meds to make them "more normal". I respect that choice, but it is a very small minority. I still feel it is socially and culturally necessary to intervene when that person exhibits patterns of behavior that are dangerous to themselves and others, which is often poorly defined, but more often as clear as a bell. In order to make that decision to intervene, there needs to be a clear understanduing that there is some impairment of thought process.

This all ties in with my feeling that the neurodiversity movement sometimes appears to be rather resentful or apathetic when it comes to the roles that mental health caregivers play in providing the sort of supports that some people need to survive. Please explain to me how providing services to people with autism who cannot feed themselves, dress themselves, bathe or toilet themselves, earn money, buy a home, go grocery shopping, blablahblah... is a problem for you all. If it is the notion that they are identified as having "deficits" - WTF? According to the social expectations of our culture, they have deficits!!! In order to provide these services, their needs have to be identified and their "differences" have to be assessed so that the proper care and support can be given. What's the problem in that? I ask again, what do you want?

Interesting tangent, BTW.

thanks,
Behavior analyst

PS: The fact that Homosexuality was dropped from the DSM many years ago should be seen as an indicator of the power of social and political influences on mental health practices. I think that is a good thing, and I am curious to see what changes in the next edition. You can bet money that Autism will still be in there, for a long time to come. The battle rages...

By Anonymous, at 5:10 PM
Foucault pendulums notwithstanding and fine geezer though he might have been was a victim of memes himself, have read said book, and do qoute it oft but he was mistaken in taking the metaphor of the Narrenschiff as a literal thing in medieval Germany which it never were, and besides that he got a lot of his historical facts wrong and out of context when one compares France and the UK.

But then he was an ideologue not an historian, however his basic thesis I agree with even though he was not the most assidous or accurate academic and indeed in his own time a leaner towards the frauds of freud not the freud of fried (freiheit notwithstanding) if you catch my drift (which nobody ever does)

By Larry Arnold PhD FRSA, at 6:36 PM
...As far as treatment of something like depression, suggesting to the person that they suffer from a brain dysfunction is not likely a good approach (and I presume many cognitive therapists might agree). That's something that I feel is a contradiction in the psychology profession and it's something that the field needs to work on...

Actually, no. The best clincal research on Depression indicates that the most effective treatment is a combination of medication AND CBT. This suggests to me that it is imperative that the client know and understand that part of their condition (I like your use of that word) is due to brain chemistry. It certainly alleviates a lot of the guilt, at least it has in my clinical experience. Keep in mind that in most cases depressionis a treatable condition. Autism is not. But the "socially defined" challenges that people with autism face can be addressed.

...Either way, the DSM-IV does not distinguish between something you are and something you have. You have depression. You have anxiety. But you are autistic. You are ADHD. You are bipolar. You are left-handed. You are homosexual...

I think that is possibly your way of looking at it, as your distinctions appear quite arbitrary to me. And I don't know any psychologists worth their degrees who feel that way. I certainly don't. I see people with autism, people with ADHD, people with Depression, etc.

BTW, I am left handed, but I am hetero. These are quite different from anything listed above, and do not interfere with my ability to function independently in the world. Why can't you see that?

thanks,
Behavior analyst

By Anonymous, at 6:42 PM
BA: "If it is the notion that they are identified as having "deficits" - WTF? According to the social expectations of our culture, they have deficits!!!"

"According to the social expectations of our culture....", eh?

And the culture is always right?

Maybe it's likely that the culture is wrong and - by holding those expectation - has become a very major cause of the disabling aspects of (in this blog's case) autism!

David N. Andrews BA-status, PgCertSpEd (pending, being subsumed into MEd degree due to be awarded Dec 2006)

By Anonymous, at 7:02 PM
I'd like to clarify one point here: Neurodiversity is not the same as anti-psychiatry. Yes, we object to the stigma associated with the use of psychiatric medications, as well as to their coercive uses, but not necessarily to the meds themselves. Indeed, there are some pro-neurodiversity bloggers (such as Janna, who comments here on occasion) who write enthusiastically about how helpful certain medications have been for them.

I have stated my views on medication in a previous post, and rather than repeating myself in detail, I'll just say that I believe a person ought to be able to take psychiatric medications, if he or she so chooses, without being stigmatized as mentally defective or a potential murderer. There should be no more stigma attached to taking Prozac than to taking vitamins or aspirin.

I am left handed, but I am hetero. These are quite different from anything listed above, and do not interfere with my ability to function independently in the world.

If that's what you believe, then I have a challenge for you, Behavior Analyst: Tell me, without any reference to arbitrary cultural prejudices, how being autistic interferes with my ability to function independently in the world. I don't think you can.

By abfh, at 7:22 PM
BA: "I think that is possibly your way of looking at it, as your distinctions appear quite arbitrary to me. And I don't know any psychologists worth their degrees who feel that way. I certainly don't."

So who died and put you in charge of placing a worth on anyone's qualifications? Don't tell me that you can't see the arrogance embodied in that statement! I think we can all see what your mission here is: you have 28 years' experience of working in mental health settings and so your word is truth, and the rest of us who choose to put forward a view that differs from yours (and that of those who trained you) can go and piss on lightbulbs, isn't it?!

David N. Andrews BA-status, PgCertSpEd (pending, to be subsumed into MEd degree due to be awarded Dec 2006),
Applied Educational Psychologist,
Kotka, Finland

By Anonymous, at 7:28 PM
...I'm familiar with that. But is there research where one group is told 'you have a devastating brain disorder' and the other group is told in a non-judgemental way, that brain chemistry is normally altered when people are depressed. I'm guessing not...

Of course there isn't, that would be unethical. And where you impressed me with the use of the word "condition", you lose points for the rather egregious use of the term "devastating brain disorder" as if it would come up in a clinical consultation regarding Depression. You loaded that statement in a way that essentially invalidates your arguement. I know from reading these blogs that those specific words are often used to inform parents that their child is autistic, and that saddens me. While I don't believe the statement is wrong per se (depending on the severity of the autism), but there are better ways to communicate such life affecting information.

...Independent functioning is not what decides whether you have or you are something. What decides that is probably innateness...

I don't know what you are talking about here. Please elaborate.

...But really, when people who are autistic prefer to think of themselves as autistic and not as having autism, that's a pretty good indication of what the proper way of looking at the condition is...

Sure, for those certain individuals who are capable of that level of self-awareness. But not every autistic, or person with autism, feels that way, or has the communicative ability to express that feeling. In those cases, us normals have to figure out what they want and need, and that is a challenge.

...Tell me, without any reference to arbitrary cultural prejudices, how being autistic interferes with my ability to function independently in the world. I don't think you can...

The way you phrase the question, I can't, but neither can you. We do not exist in culture-free vacuums, and you are asking a question that is impossible to answer. It's also very unrealistic, which seems to me is one of the pervasive features of the neurodiversity movement - unrealistic expectations and beliefs within a cultural context. I think I made a very powerful statement (which nobody has responded to) when I asked "Please explain to me how providing services to people with autism who cannot feed themselves, dress themselves, bathe or toilet themselves, earn money, buy a home, go grocery shopping, blablahblah... is a problem for you all."

Nobody has addressed that issue, and I am wondering why. Do you not concern yourselves with the needs, wants, and rights of your fellow autistics if they are so low functioning that they cannot be an active contributor to your meurodiversity movement? If not, why not? Don't they deserve a voice? If you think they do, then why don't you provide that voice for them in a realistic manner? And if you don't then why do you get angry when someone like me (I think I have proven myself as a sincere human rights advocate even though I challenge some of your beliefs and practices) takes on that responsibility?

...So who died and put you in charge of placing a worth on anyone's qualifications? Don't tell me that you can't see the arrogance embodied in that statement! I think we can all see what your mission here is: you have 28 years' experience of working in mental health settings and so your word is truth, and the rest of us who choose to put forward a view that differs from yours (and that of those who trained you) can go and piss on lightbulbs, isn't it?!...

Mr. Andrews, I realize that you have some type of autism, and your method of interpreting statements may be a little "different" than what I am used to. you are completely off the wall here, and your misconceptions are absurd. I guess you are still pissed off at me calling you out for unethically claiming credentials you dont have... YET! Take a chill pill and contribute something meaningful, OK? Until you do, I will simply ignore your silly tirades.

One of these days, I will take the time to write an essay about how I spend my working time. Just as a teaser, today I travelled 75 miles to help get a severely disabled man with autism get out of a state institution, into a community based host home, and asked the psychiatrist to stabilize his meds in a way that would make the transition back into the community as easy and safe as possible for him. I just called the new home, and he is settling in and doing ok, so far. I thought about the things I have read on these blogs almost the entire time I was dealing with this situation, and what I have learned here has had a significant effect on how I conceptualize the challenges my clients and I face each day. I sincerely thank those of you who respond to my posts with thoughtful and educational remarks, and I want you to know that I have learned an immense amount about the nature and function of autism through these dialogues. If I am seen as an intruder or a troll, please let me know and I will curtail my participation. But if there has been any mutually beneficial dialogue, I will be happy to continue participating.

Thanks,
Behavior Analyst

By Anonymous, at 10:28 PM
"I guess you are still pissed off at me calling you out for unethically claiming credentials you dont have... YET! Take a chill pill and contribute something meaningful, OK? Until you do, I will simply ignore your silly tirades."

So you are here to be the great teacher!

Right.

I'll teach you a little about the way we do things where I live.

Here, we measure our qualifications by the number of academic credits we have achieved. It is not uncommon to see people having completed 120 study-weeks' worth of credit and being referred to as BA or BSc. In fact, it was done that way with my wife, when I was married: her university advertised her as BSc, even though she had no such degree; you see, Behaviour Analyst, in Finland, we didn't take the bachelor degree because the way of doing things here is to go straight on with the Master's degree.

Of course, you being on a mission here to be our great white hope, forgot to ask questions before coming out with this "I'll set you all on the right track" stuff you've been coming out with. After I finished my 120 study-weeks at Oulu (in Finland), I transfered to Birmingham, in the UK. And from there, upon completion of the requisite amount of study (basically 20 study weeks) I got a piece of paper from the University stating clearly that - should I wish to leave my studies - I would leave with a post-graduate certificate in special education. Since I am about to submit my MEd thesis, I do not feel like quitting my studies, just to satisfy your sorry-arsed demand to stop stating what is in fact the truth. I have BA status with a university, being a postgraduate psychologist there. I also have (by virtue of having the credits for it) a pending award of PgCertSpEd, which is pending because it is to be subsumed into the MEd that I should get in December.

Had you not been so arrogant, and instead ASKED why I used those qualification designations (which, incidentally, the University of Birmingham does not object to in the least, which begs the question: what fucking right do YOU have to object?), you might have learned this earlier. Instead, like you typically seem to do, you come in... all arrogant and so correct; and this time, pal, you fell flat on your arse. If my university has no objections to what I say about my qualifications (and those designations go on every paper I submit to the university), then - quite frankly - your opinion has as much clout as a wet piece of dog turd.

And I think that I can be sure that the vast majority of posters here would agree.

Now you just got found out for not being such a good psychologist as you think you are. You ought to know that your first job in interacting is to find things out, not to say how things are.

For all we know here, you may actually have a PhD from a diploma mill! How do we know?

And I'm certain that - in my time training in applied educational psychology - I have yet to meet a psychologist with as little clue how to find out about people (without raising people's hackles) as you seem to have.

Did you not like that you were sussed out? I have yet to see anything like a question about the autistic experience, and yet... you come on here with this sort of claim: "My experiences in those settings were a strong impetus for me to choose my career path - I knew something had to be done differently, and it took getting an education and becoming an advocate." (from another thread)... you don't get even close to asking us about our experiences, and yet you claim that you could be an *advocate* for people like us? How can you possibly claim to advocate for people whose experiences you have never actually bothered to ask about?

If anything pisses me off about your actions here, it would be this:

1) you come here assuming you know more than we do about what we experience (evidenced by the lack of a single sign of interest in what *we* experience);

2) you insult us all in your first post, and fail to accept that there was no *if* about anyone being offended;

3) you then attempt to attack my claims of qualification without even understanding the culture in which those qualifications are claimed;

And 4) you continue to provoke antipathy in every post you make, purely by demonstrating a dogged insistence that you are right (not once have you even considered that a point made by any of us might have any validity).

Dunno about any others here (although I reckon that I could make a pretty good guess), but I would not want you advocating for *me*, or for my ex-wife or for *my* daughter. You are way too far away from having earned either the the trust or the right.

David N. Andrews BA-status, PgCertSpEd (pending, being subsumed into the MEd due to be awarded in Dec 2006),
Appled Educational Psychologist,
Kotka, Finland

PS.

For slow-to-learn PhDs on the blog:

*BA-status awarded on admission, by implication, as postgraduate:

** Psychology 61sw
** Mathematical Sciences 30sw
** Archaeology 20sw
** Finnish Language 9sw

** Total- 120sw = BA in Finland (i.e., we don't get the paper; we use the letters and, if PhD behaviour analyst had been reading correctly, s/he would know that I use BA-*status* instead of BA)

*PgCertSpEd (pending):

** Understanding and Working with the Continuum of Need 7sw
** Intervention, Care and Education 7sw
** Special Study in Educational Psychology: psycho-educational assessment 7sw

(all topics tackled within the 'educational psychology' part of the "Inclusion, Special Education and Educational Psychology" field in which these studies were taken)

This is the substance of the Postgraduate Certificate in Special Education - which I lay claim to as a *pending* award, because I have carried on with my studies to get the MEd.

I actually have documents for all of the above.

It does rather cross my mind that this Behaviour Analyst may actually be saying what s/he is saying about my credentials just to get a reaction from me. Which begs another question:

Who here, knowing that, would want the Behaviour Analyst to advocate for them or theirs?

By Anonymous, at 11:22 PM
Behavior Analyst:

I've been staying out of the discussions because I don't always know if I have anything to contribute, and often the others say it so much better than I do.

I was diagnosed with ADHD in February 2005, at the age of 28. I do take Strattera to help control my symptoms (as abfh mentioned earlier in this thread), and I'm currently considering a meds adjustment because I'm not totally sure it's doing what it's supposed to do at its current dose. And eventually I'll figure it out, and someday I might even get to wean myself off my meds completely. (Of course, if I get married and pregnant - in that order, thanks - I'll go off 'em completely, regardless.)

I am ADHD. In an e-mail I sent my family, just after my dx, I said, ...nothing has changed - I am still me. There's just a label for what makes me who I am.

Do you get that? Do you see the distinction there? ADHD makes me who I am. It's not something that can ever be separated out from me, from my identity, from the way in which I exist in the world. The medication that I take doesn't make me "not-ADHD", it just slows my brain down long enough that I can actually catch one or two of the thoughts that are continually flitting around in my brain.

I used to be an ABA therapist. I still do respite for a few families now & again, but I work as a church secretary during the day.

I did ABA (primarily in-home programs with children as young as 2 and as old as 13) for just over six years. By the end, I was so stressed out from the combination of (a) trying to maintain a decent enough caseload that I could make a living, (b) trying to integrate my evolving philosophy regarding autism and disability with the philosophies and purposes behind what I was doing, and (c) keeping everything straight in my mind all at once, that I think I'm lucky I didn't have a complete nervous breakdown (I did come quite close a few times).

I'll tackle the question you asked now, and the others can correct me if I'm wrong.

You asked, Please explain to me how providing services to people with autism who cannot feed themselves, dress themselves, bathe or toilet themselves, earn money, buy a home, go grocery shopping, blablahblah... is a problem for you all.

Basically, to my mind, it comes down to choice, control, and independence. Is the autistic person choosing the services being provided? Are those services actually required by the autistic person in question? Are the other needs of the autistic individual being taken into account?

By "other needs", I mean sensory processing issues, "wind down" time, and other such things that for some reason are rarely allowed for in the lives of autistic people. I myself have sensory processing differences (certain sounds cause me physical pain, for one thing) and require a lot of "wind down" time after a day at work (which is, I have finally figured out, the main reason why my things aren't all that well organised - believe it or not, I am a naturally well-organised person, though my home is rarely tidy).

How much of what you've listed as things that are services being provided (by you?) to autistic people are things that are actually necessary for life? I helped a parent fill out a behaviour scale assessment last year (I forget which one, but I can probably find the name of it if I can locate the right folder), and some of the things on that assessment are things that hardly anyone actually does, but supposedly we need to teach this ten-year old boy how to do them? The two of us (meaning the parent and myself) thought it was ludicrous, but completed the full form because we needed it to file for continued funding of his home program.

I will note that there is a false distinction made by you (and many professionals) between "low functioning" and "high functioning" autism. There are a few people on the Hub who are "low functioning" and receive several of the services you say you provide. You may not realise who they are, because they don't bring such things up in every post. I've worked with "low functioning" kids whose main problem was that they had no reliable way of communicating much of anything beyond what they wanted to eat or play with. That is not their failure, it's the failure of the professionals and the system who seem bent on proving that "low functioning" autism = inability to function in the world, inability to learn, and inability to think. Not true.

Finally, in response to this: I sincerely thank those of you who respond to my posts with thoughtful and educational remarks, and I want you to know that I have learned an immense amount about the nature and function of autism through these dialogues. If I am seen as an intruder or a troll, please let me know and I will curtail my participation. But if there has been any mutually beneficial dialogue, I will be happy to continue participating.

It takes a bit of time to "win them over". It takes time to build trust and relationship. I've had problems in the past because of my occupation, but if you stick it out and deal with everyone with respect (even if you don't feel they're being respectful to you), eventually you'll become "one of the crowd".

Heck, just last week, over on alt.support.autism, I posted some suggestions to a parent and got told off by a complete stranger, and then about four or five of the other regular (autistic) posters jumped to my defense. But I've been posting there since 2002 or something, so there's history, even though I'm not as active as I once was.

Keep posting, keep trying to wrap your brain around the fact that these autistic people are just that - people - and that they have different ideas about how you ought to be doing your job. It's a toughie, but it's worth the effort.

I promise.

By Jannalou, at 11:34 PM
Oh, and another thing for the behaviour analyst....

The old rules for Graduate Membership of the British Psychological Society allow that a bachelor's degree (or a foreign equivalent) with 50% studies in psychology gave eligibility for 3 points on their aggregate points system; a PgCert in a psychological subject was worth 1 point; and that a further point could be awarded for each of any single full-time year equivalent of supervised work in applying psychology (e.g., teaching, research, designing training packages, conducting assessments and making recommendations on the basis of these, designing informational materials, talking/lecturing at conferences and seminars, and so on): I have about 2 ftye's worth of practical work experience in psychology, in all of those areas, under Glenys Jones' supervision (my - er - supervisor at Birmingham).

Make me eligible, according to the points table, for 6 points.

Eligibility for 5 points means one is considered by the BPS, under those rules) to be a 'psychologist'.

Nothing unethical about what I do.

There is a very unethical quality about provoking angry responses in someone who might justifiably claim could be part of your client group, albeit at a very great distance, but then.... autistic is autistic: I am autistic, and you have stated that you drove 75 miles to work with an autistic person. So such a claim could be made. If anyone is out on an ethical limb, Behaviour Analyst, it is you.

By Anonymous, at 11:45 PM
Janna,

You're no troll.

I was interested to read what you wrote. Very accurate, is what.

David :)

By Anonymous, at 11:54 PM
Janna, thanks very much for your thoughtful and well-written comment. You definitely have something of value to contribute; please don't ever worry about that!

On the issue of services: No one here has a problem with providing necessary services. In fact, you'll find many neurodiversity activists arguing that more services are needed. What's in dispute is the nature of the services, as Janna mentioned, as well as how the services are provided and how their recipients are treated. Once again, it's the broader cultural context that we are addressing.

Every person in today's society needs a tremendous number of services just to survive every day. Not one of us is truly independent. We don't grow our own food or build our own houses as our ancestors did. If a sudden natural disaster forced us to rely only on our individual abilities, the vast majority of the human race would starve.

Most of the services provided by our society have been categorized as "normal" services for "independent" people, while others are regarded as social services for the disabled and needy. These distinctions are almost entirely arbitrary. Often, the same service is put in a different category depending on who receives it. Food preparation is a good example: if an agency staff worker cooks meals for an autistic person, that's a service for a dependent person, but if a rich family hires a cook, that's considered normal.

One of these days, I will take the time to write an essay about how I spend my working time.

Feel free to post it here, Behavior Analyst. I would be interested to know.

By abfh, at 11:37 AM
Joseph, to Behaviour Analyst: "As to those who cannot communicate, you can only guess at their wishes, so that doesn't validate your position."

Actually, the fact of having to guess has serious implications for both the reliability and validity of the imputations it is possible to make in such people's cases.

Having to guess in itself reduces reliability of the information obtained; that reduction in reliability leads to a problem...

The validity issue is about the shared variance between a predictor and a criterion measure. And this is usually quantified as the square root of the product of the reliabilities of the prediction measure and the criterion measure. On a qualitative level, guessing (pre-supposing, without actually asking for information) is a serious enough threat to reliability of predictor for all bets to be off, even with a reasonable reliability coefficient for the criterion measure. This is where a great many clinical studies fall down, when an attitude of "only objective measures are worthy of consideration" guides the protocol. Often, with the case of autism, there is too much guessing. That reduces the reliability of the criterion measure (as based on the prediction measure, which is the guess), which is the validity.

Shit... I am just SO good at this!

David N. Andrews BA-status, PgCertSpEd (award pending, to be subsumed into the MEd that will be awarded in Dec 2006)
Applied educational Psychologist,
Kotka, Finland

By Anonymous, at 3:49 PM
...But not every autistic, or person with autism, feels that way, or has the communicative ability to express that feeling.

Can you cite an autistic person who doesn't feel that way? I'm just curious - I'm sure there must be a few....

I can't find it right now, but if I recall correctly the young lady in the Creative Loafing story seemed to be more than willing to surrender her autism. I think she had come to terms with it and was basically comfortable with it, but she seemed to have some desire to not be autistic. It's a tough question, and probably unanswerable in every case. I will think about it.

...As to those who cannot communicate, you can only guess at their wishes, so that doesn't validate your position...

Regarding their identification as an atustic person, we obviously don't know what they are thinking, but regarding their wants and needs for services and survival, we try our best to make educated guesses. It often boils down to playing "20 Questions", which increases the frustration of the client and often leads to the caregiver giving up. It sucks, but it's all we have right now. I know for a fact that without us clinicians and caregivers playing 20 questions and ultimately figuring out what some of my clients want and need, most of them would die. Some of them do.

...On a qualitative level, guessing (pre-supposing, without actually asking for information) is a serious enough threat to reliability of predictor for all bets to be off, even with a reasonable reliability coefficient for the criterion measure. This is where a great many clinical studies fall down, when an attitude of "only objective measures are worthy of consideration" guides the protocol. Often, with the case of autism, there is too much guessing. That reduces the reliability of the criterion measure (as based on the prediction measure, which is the guess), which is the validity.

Shit... I am just SO good at this!...

At what, academic regurgitation? How tangential can you get? Even the best scientific controlled studies in the world still accept <0.05 as valid. How do you think those folks in the 0.05 category feel when they are informed that their reality is wrong? (Sound a little like the autistic dilemma, doesn't it?)None of what you rattled on about has any real bearing on applied behavior analysis. We do single case design work, and leave the statisitcs to the cognitive and experimental people. We address the threats to reliability and validity in operational terms, and control what can be controlled. One of the luxuries of single case methodology is being able to avoid statistics. The other is we deal with real people in real situations, and acknowledge the uniqueness of those people. And we make "educated guesses", which are quite different from whatever you were talking about.

As I said before when dealing with noncommunicative autistic clients, we often have to guess, but that encompasses what I call making "educated guesses" based on past observations, patterns of behavior, awareness of current states of deprivation, and an awareness of what's going on in the current environment (that is esentially a "functional assessment"). No good BA goes into a situation and just pulls a solution ("guesses") out of the air. We extensively analyze as much as we can about the situation, then draw the best educated conclusions we can. Does that sound like "pre-supposing, without actually asking for information" to you?
Skinner always talked about behavior in terms of "probability", which is a wise way to look at things. When you state things in terms of the probability of occurrence, you allow for the effect of what confounding factors you cannot control. ABA is imperfect, just like everything else, but it is the best fit practice I have found for my own work.

Yeah, we still have to guess, but our guessing is driven by knowledge. Would you rather we just said "the hell with it" and abandoned people?

thanks for the responses,
Behavior analyst

By Anonymous, at 5:14 PM
"At what, academic regurgitation? How tangential can you get?"

Excuse me? Now you ARE being an offensive idiot, aren't you? You cannot accept that a guess (which seems to be all you ever do, based on your behaviour here!) is not really a reliable method of working, can you? You can't accept that you really need to ask a lot of questions before you can come to any conclusions, can you? Now I'm having difficulty believe that you went to any APA-approved PhD course. Wouldn't that be part of the training? It was certainly part of mine!

Or is your issue about the idea of an autistic psychologist?

"Even the best scientific controlled studies in the world still accept <0.05 as valid."

That's a probability issue, not a reliability thing.

"How do you think those folks in the 0.05 category feel when they are informed that their reality is wrong?" (Sound a little like the autistic dilemma, doesn't it?)"

Like I say, I was talking about a reliability issue, not a probability one. You seem intent on failing to understand anything I say.

"None of what you rattled on about has any real bearing on applied behavior analysis."

If all you can do is guess, it has plently to do with ABA. Didn't Skinner say that, "in order to fully understand the public events, one has to understand the private ones?"

"We do single case design work, and leave the statisitcs to the cognitive and experimental people."

Cop out. I wouldn't if Jonathan or Janna would agree with you there.

"We address the threats to reliability and validity in operational terms, and control what can be controlled."

Isn't a guess without any information a serious threat to reliability? I was taught that. Just about any decent text on research methods and statistics (i.e., one approved by staff at a university) would say so. Without reliable information, all bets are off.

"One of the luxuries of single case methodology is being able to avoid statistics."

Statistics is important even in single case designs... certainly of one is to detect any sort of meaningful pattern in a group of single case design studies. And ultimately, the detection of patterns is what helps to find things out.

"The other is we deal with real people in real situations, and acknowledge the uniqueness of those people. And we make 'educated guesses', which are quite different from whatever you were talking about."

You yourself just seem to make guesses. You haven't asked a single significantly useful question about the experience of any person here. Yet you come in with this attitude that you know everything and can teach us. Not a good sign, really.

"Yeah, we still have to guess, but our guessing is driven by knowledge. Would you rather we just said 'the hell with it' and abandoned people?"

Your guessing here is not driven by any knowledge: if it were, your first post would have been much less offensive than it was. As for the question you posed there, that's just a straw man tactic.

You have a lot of issues and it is disturbing that someone with those issues has come here.

David N. Andrews BA-status, PgCertSpEd (award pending, to be subsumed into MEd degree to be awarded in Dec 2006),
Applied Educational Psychologist,
Kotka, Finland

By Anonymous, at 11:58 PM
"No good BA goes into a situation and just pulls a solution ("guesses") out of the air."

That is exactly what you seem to be doing in your interactions here...

DNA

By Anonymous, at 11:59 PM
...You can't accept that you really need to ask a lot of questions before you can come to any conclusions, can you?...

What part of "I do extensive functional assessments" do you not understand? All of it? And I read a whole lot about these topics before I posted on this site, talked to my clients, and observed.

...Now I'm having difficulty believe that you went to any APA-approved PhD course. Wouldn't that be part of the training? It was certainly part of mine!...

Your seem to have this incessant need to point out what you think are shortcomings in my training, when you are completely missing the point of my comments. I know you are proud of your academic achievements, and rightly so, but "award pending... to be subsumed... to be awarded..." are all future tense. You don't have it all YET!

...Or is your issue about the idea of an autistic psychologist?...

No, my issue with you is that you started our dialogue by cursing me out (very unprofessional), then you challenged my credentials (which are legitimate, believe what you want), then when I respond to you like I would a peer and argue back at you, you play the "autistic" card and question my professionalism and ethics. My issue is that you seem to want to play both sides of the game at your convenience - the educated intellectual, and the autistic victim. THAT is unethical, and exposes your own agenda. Pick one and stick to it. If you are so dang proud of your education, use it appropriately.

...You yourself just seem to make guesses....

I have said that several times, and I clarify it by making "educated guesses" and explaining several times what that entails. If that concept is too dense for you, then give it up.

...You haven't asked a single significantly useful question about the experience of any person here...

For the 5th, 6th, or 7th time "What do you want?"

...You have a lot of issues and it is disturbing that someone with those issues has come here...

Ah, the last defiant act - pathologize me because you don't like what I say. That doesn't work. You lose.

Behavior analyst

By Anonymous, at 1:32 PM
"What do you want?"

Acceptance. Respect. Integration. Equal opportunity. Reasonable accommodation for differences. Basically the same things any other minority group wants. It's not that complicated.

By abfh, at 2:19 PM
...Acceptance. Respect. Integration. Equal opportunity. Reasonable accommodation for differences. Basically the same things any other minority group wants. It's not that complicated...

Thank you, thank you, thank you. I have been trying to get an honest answer to that question since I began posting, and it validates so much for me to finally get it.

My only question at this point is regarding the issue of "Reasonable accommodation for differences". I am very much in support of that, however the parameters of what is "reasonable" seem to be one of the toxic issues on these blogs. I would be interested to hear what some of you think is "reasonable" in terms of accomodations, and what you think crosses the line.

Thanks, I really appreciate your answer.

Behavior analyst

By Anonymous, at 12:31 AM
My only question at this point is regarding the issue of "Reasonable accommodation for differences". I am very much in support of that, however the parameters of what is "reasonable" seem to be one of the toxic issues on these blogs. I would be interested to hear what some of you think is "reasonable" in terms of accomodations, and what you think crosses the line.

Reasonable accommodations are anything that seriously levels the playing field.

I wear corrective lenses; without my glasses (or, shortly, contact lenses), I would not be able to see much besides coloured blobs. I also take medication for my ADHD; without it, my brain bounces all over the place and it's difficult for me to focus on things the way I want to.

My meds and my corrective lenses help to level the playing field.

When I started my job at the church, I ended up having to get physiotherapy for my tendonitis, because it flared up to the point that my entire right arm, shoulder, and back were in constant pain (and my left was catching up quickly). My tendency towards developing an RSI required accommodations in the form of a proper chair to sit in when working at the computer (which is where I spend most of my time when at the office).

That chair levels the playing field.

One of the agencies I used to work at had mainly disabled staff. The computer tech guy was deaf, and one of the computer instructors was in a wheelchair and had limited use of her hands. We wrote our requests down for the computer tech guy, and he wrote things down for us. The entire office had wide doorways so that the wheelchair would fit through easily, and I believe her computer used voice recognition technology.

Those accommodations leveled the playing field.

"Reasonable accommodations"? What do you consider to be unreasonable accommodations?

Well, we do see one instance in another thread, where you've noted that someone who cannot work a full 8 hour day obviously cannot do the job. Which is, as was pointed out on that thread, "bollox". Why the longer shift can't be split into two part-time positions I don't know.

My ADHD challenges my ability to maintain organisation and structure within my day if I don't have an external schedule imposed upon me. If I weren't allowed to use a PDA (which the church is going to pay for, amazingly enough) to keep track of tasks and projects, things would likely fall apart fairly quickly. If I weren't allowed to have a set of shelves directly above my desk, where I keep often-referenced books and materials, I would be less effective because the distractibility factor (of getting up and walking around to go get something) would be increased exponentially.

Those accommodations level the playing field (and they weren't made with the knowledge that I have ADHD, either).

I need a lot of time to decompress after a day at work. I have to come home and spend time by myself, doing my own thing, before I go to spend time with friends. My friends, who are all aware of my diagnosis, know and understand this. They allow me that time.

This accommodation levels the playing field, because it means that I am actually able to interact and be somewhat capable in the social situations I get myself into with my friends.

"Reasonable accommodations" - the autistic people posting on this thread can probably give you more examples.

Oh, and definitely read through Joel's blog and web site especially the page about employment.

By Jannalou, at 1:35 AM
On the 8 hour day issue: Not so long ago, many men argued that women couldn't handle full time employment because child care and "female problems" would seriously interfere with working an 8 hour day. As we all know, that argument turned out to be groundless. Businesses had no trouble accommodating mothers of young children with arrangements such as telecommuting, flextime, and job-sharing. The pharmaceutical industry developed effective medications for menstrual discomfort. The ability to work an 8 hour day turned out to be a total non-issue.

I suspect that the mental image you have of an autistic person who cannot be accommodated in the workplace, Behavior Analyst, might be someone who is extremely sensitive to noise and other stimuli and, if she feels overwhelmed, suddenly could start banging her head on her desk or something like that. But you know what? Such people can and do hold full time jobs, often with very minimal accommodations. Read Zilari's comment on this post on Joel's blog. Zilari is college-educated and has a full time professional job. Last year, she was having sensory meltdowns at work because of noise. Then she bought an iPod (presumably with her own money, although the comment doesn't specify that). Problem solved, at no cost to her employer.

By abfh, at 9:01 AM
Behaviour Analyst...

"I know you are proud of your academic achievements, and rightly so, but "award pending... to be subsumed... to be awarded..." are all future tense. You don't have it all YET!"

So fucking what" Actually, the PgCertSpEd is awardable now, but I do not intend to leave my studies just to make you happy. Stuff that. And the letter of achievement basically states that, to all intents and purposes, I HAVE THE PgCertSpEd. So, stuff you.

"Ah, the last defiant act - pathologize me because you don't like what I say. That doesn't work. You lose."

Um... Actually, you tried it on me first, so you lost then... by your own reasoning.

Get real.

I'm happy to enter into dialogue, really. But not with someone who assumes that s/he has the answers and I have nothing but questions.

The minute that you treat me like an equal, you'll get my respect.

"My only question at this point is regarding the issue of 'Reasonable accommodation for differences'."

Okay. I'll bite on this one.

Reasonable accommodation is that which overcomes structural discrimination, or which compensates for aspects of the teaching/learning environment and/or methods that would ordinarily leave the student (in my capacity as an educational psychologist, I have to define things in terms of educational settings) at a substantial disadvantage. That is as far as I can come up with a definition without having to rely on specifics.

My thesis deals with the case of a young chap who applied to do a BEng degree in Energy Technology, hoping to specialise in Environmental Engineering. He is (from the investiagtive work we have do over the past 18 months) clearly Asperger-autistic (having fulfilled the criteria as operationalised by Gillberg in 1989). In addition, when his responses to the ASDI were cross-referenced to the criteria developed purely for adult dx by Tantam, they matched there also; we concluded from this that the chap is Asperger-autistic: F84.5 as opposed to F84.

At no point in his application process did this chap get any counselling - either at high-school or at the polytechnic - regarding his rather naive choice of degree for which to study. His leaving certificate profile from high-school did not contain enough background studies in mathematics or physics (8 courses out of something like 50-odd for the 'lukion päättötodistus'). A reasonably competent occupational psychologist or careers counsellor or admissions officer would have spotted that.

He passed an entrance examination, which - in Finland - has about as much reliability as a Lappish summer night has darkness. So, the poly let him in, without calling him for an interview.

His grades were monitored (as they are required to be when someone is on state student support payments), and yet it took the polytechnic THREE YEARS to intervene. The intervention: stopping his payments, despite the fact that he was talking to a psychologist well-acquainted with educational issues for autistic persons in higher educational settings.

On examination, this chap was found to experience difficulties learning mathematical and physical concepts. He was also found to have difficulties using language (although his colleague in the Green Party, a Communications major with a post teaching academic Finnish at another branch of the polytechnic, had been in a position to help him to improve his academic-linguistic skills to the level where anything he submits to the local newspaper is immediately published).

Even so, his mathematical skills let him down, and he has definite dyspraxic issues going on (measured using DTVP-A); his verbal IQ in Finnish is at least 115 but his PIQ suffers from the problems he has either with movement or with planning courses of action and computing consequences of actions.

It was also clear that this chap has a working memory problem: his ability to do mental arithmetic tasks was severely compromised, and - given the emotional sensitivity element to his make-up, coming up in the next paragraph - was severely jeoparised in high-stress situations (even the testing situations proved nerve-wracking for him).

A personality assessment showed him to be highly sensitive to his own emotional state and quite adversely influenced by it, as well as being a not-very-socially-oriented person. His social circles are few and have very subject or topic specific foci, which subjects/topics are centred on his special interests.

There is a number of points at which interventions should have been conducted during his academic career at the polytechnic.

Firstly, his study counsellor at high-school fucked up: this person should have questioned him on his choice of course, on the basis of his background studies.

Secondly, the admissions officer at the polytechnic should have called him in for interview to ask why he'd chosen that course with the background he had. At any point where it became doubtful that the chap would succeed, the admissions pfficer should have rejected the application.

Thirdly, the polytechnic - after monitoring his grades for three years - failed to intervene even after the second year's poor performance, let alone the first year's. Had there been a study support network in place at the polytechnic, this chap could have been directed there at the end of his first year's studies to get remedial support for his mathematics skills (during the three years, his failed courses almost entirely were in the fields of mathematics, physics and engineering technology). The polytechnic's approach was essentially a too-little-way-too-late approach. The polytechnic, in order to get money for having this guy's arse on one of its seats, had wasted three years of his life AND wasted three years of his study support entitlement... just for him to fail as expected (there is no evidence that the expected him or wanted him to succeed... ).

In his case, reasonable accommodation would have been something like:

1) additional time in examinations (and/or - for maths/science/technology exams - the requisite formulae on a card);

2) printed lecture notes given a few days beforehand, so that he could have built up some idea of what was going to be dealt with... lectures being conducted too fast came up a lot in interview with this chap;

3) separate examination facility, with opportunity to take a break when necessary;

4) opportunity to undertake project-based assignments instead of examinations (or at least to do occasional similated project-based assignments, as a means by which to provide corrective information about his actual abilities, rather than his abilities under conditions that prove way to stressful for him;

5) other recommendations to be determined after further interview and testing.

I would not expect the polytechnic to allow someone else to do his work for him, and nor would I expect the academic standards to be lowered. but, given the clear discrepancy between what this chap is capable of (in a suitably sympathetic study environment) and how he has performed (in a completely negligent one), it is clear that accommodations at least commensurate with my recommendations above are necessary.

I have gone out on a limb here, Behaviour Analyst. I have made an effort at dialogue. I expect, in return, for you to accept that a pending award of PgCertSpEd (for which the work HAS ALREADY BEEN DONE) and BA-status (on the basis of a BA's worth of study), and at least a full-time year equivalent work experience, supervised by a BPS recognised psychologist in my chosen professional field, is enough for me to call myself a psychologist: the BPS has no issue with this (it can't, since the points scheme it use to operate allows me to be called a 'psychologist', as I have previously detailed). Moreover, my claims of qualification are within what is allowed in Finland, which is where I practice. Do not impose the US culture on my current one.

I am not claiming expertise that I do not have, although I have got that expertise by following an unorthodox route. The above should at least give you SOME clue about that.

Ball's in your court now.

David N. Andrews BA-status, PgCertSpEd (award pending, being subsumed into MEd degree to be awarded Dec 2006),
Applied Educational Psychologist,
Kotka, Finland

By Anonymous, at 11:20 PM
ABFH:

"Read Zilari's comment on this post on Joel's blog. Zilari is college-educated and has a full time professional job. Last year, she was having sensory meltdowns at work because of noise. Then she bought an iPod (presumably with her own money, although the comment doesn't specify that). Problem solved, at no cost to her employer."

Interesting that you mention this.

For my small-scale research project case-study client (which was for the PgCertSpEd), my, my supervisor, and the School of Education were able to put together a study support network for the chap in that study (different from the one in my response to Behaviour Analyst)... at practically no cost, should have have taken the place offered to him by Birmingham University, instead of trying again for Helsinki University (he had good reasons for trying at Hki, but getting an offer from B'ham was instrumental in informing him that he was able to get into a university).

David N. Andrews BA-status, PgCertSpEd (award pending, being subsumed into MEd degree to be awarded Dec 2006),
Applied Educational Psychologist,
Kotka, Finland

By Anonymous, at 11:26 PM
David: I agree that better academic counseling would be very helpful in keeping autistic students in school and matching their interests and abilities to careers where they can excel. Because counseling is a service already provided by the schools, there would be very little additional cost involved in training the guidance counselors to work with autistic students.

By abfh, at 12:22 PM
"Because counseling is a service already provided by the schools, there would be very little additional cost involved in training the guidance counselors to work with autistic students."

I agree entirely. There are teachers involved in this activity, but what came from my study was this preponderance (sp?) of teachers being shoved into the job by the schools because of not being thought of as any good for anything else. This is actually quite damaging for the students, and the teachers; but it has further-reaching effects: without appropriate counselling (for anyone having issues with career selection, not just autistics), a person could end up in entirely the wrong job for them purely because the money's supposed to be better (many Finnish medical practitioners get into the idea that way, and this has had horrible results for many patients).

David N. Andrews BA-status, PgCertSpEd (award pending, MEd degree to be awarded Dec 2006),
Applied Educational Psychologist,
Kotka, Finland

By Anonymous, at 5:04 PM
Janna Hoskin is a former autism mental health caregiver. David Andrews is currently an autism mental health caregiver. I don't know who you are, anonymous "Behavior analyst," or specifically what you have done, so it is a little difficult to respond to your request for appreciation and validation for the role you play in the autism community. Not every autism professional is entitled to that.

I think your belief that autistic self-advocates do not include or even care about "lower functioning" autistic people and their needs shows that you have not taken the time to study the neurodiversity movement in any depth. If you did so, you might agree with some other autism professionals, such as Dr. Laurent Mottron, Dr. Morton Ann Gernsbacher, and Dr. Darrold Treffert, who do not seem to find the idea of autism acceptance unrealistic or threatening.

I also don't see why you, as simply a person with anonymity, are setting yourself up as a spokesperson for mental health caregivers and so-called low-functioning autistic people. Especially when some of the people who you claim are dissing mental health caregivers are themselves mental health caregivers or "low-functioning" autistic people.

Whoever you are, if you are indeed an autism professional, I think you owe it to the autistic people you work for not to dismiss out of hand the idea that they have rights to dignity and self-determination.

By Anne, at 7:36 PM
Anne...

I can only assume that Behaviour Analyst hasn't encountered Amanda yet.....

LoL....

Incidentally, one of the things I like about Janna and Jonathan is that they give their names... that's being a person, that is.

David N. Andrews BA-status, PgCertSpEd (award pending, MEd degree to be awarded Dec 2006),
Applied Educational Psychologist,
Kotka, Finland

By Anonymous, at 10:55 PM
What has happened to the Behaviour Analyst...? Not seen him/her for some days now.

Not really missing him/her, but curious...

By Anonymous, at 4:16 AM
Hello again,

I apologize for not folowing up on these very interesting and informative comments about "reasonable accomodations" and other topics. I was in a self-imposed "time out" with the Labor Day holiday and just destressing from a very busy month. Thanks for the mostly civil responses, and when I get a little free time (hopefully this evening) I will post a comment addressing these points.

In general, I feel that most of the accommodations you have listed are pretty standard stuff and basic common sense that should be incorporated into just about anyone's situation if the need is there, and a lot of what you suggested does not really stretch the parameters of the ADA. They are still good points and suggestions, but honestly I have addressed most of those issues in the past with my clients, even the 8 hour work day. I guess that since a lot of my work is with Autistic individuals who cannot focus on an external stimulus for more than 2-3 seconds and who may exhibit severe SIB when positively prompted to do so even in the most benign manner, I was hoping for some suggestions that were less obvious. For example, I work with a young autistic man who has an intense fixation on fire extinguishers and electrical outlets, and it is literally impossible to take him anywhere if these items are in the environment, which is everywhere. How do I get him a job?

Finally,
...Whoever you are, if you are indeed an autism professional, I think you owe it to the autistic people you work for not to dismiss out of hand the idea that they have rights to dignity and self-determination....

I never did this, so why are you saying it?

Thanks, and I will be back soon.

Behavior analyst (male)

By Anonymous, at 9:41 AM
Hello again, Behavior Analyst, I hope you had a good holiday.

I work with a young autistic man who has an intense fixation on fire extinguishers and electrical outlets, and it is literally impossible to take him anywhere if these items are in the environment, which is everywhere. How do I get him a job?

Hmmm... my first thought is that he might enjoy working as an occupational safety and health inspector. Maybe he could get an entry-level position inspecting the fire extinguishers, electrical outlets, and other required devices in factories and office buildings.

I hope you don't mind if I point out another unstated assumption in your use of language. When you say that you want to "get him a job," there's an underlying implication that he is not responsible for, or capable of, getting his own job. Indeed, he may not know how to find a job, but your task is to guide him through the process, not to make his career decisions for him.

This point may seem nitpicky to you, but when I was a young girl, I read a children's book about a visiting nurse. The book had a very racist chapter about a "negro" who was unemployed supposedly because he lacked any useful ambitions and couldn't focus on a job long enough to keep it. The kindly (white, of course) visiting nurse thought about what sort of work would be suitable for him and "found him a job."

The same patronizing tone often exists when professionals discuss job training and placement for autistic workers. As Anne mentioned, this raises significant issues of dignity and self-determination.

By abfh, at 12:44 PM
Behaviour Analyst,

I don't know what you intend to say about what I posted regarding reasonable assumptions for my client as part of my thesis. However...

"For example, I work with a young autistic man who has an intense fixation on fire extinguishers and electrical outlets, and it is literally impossible to take him anywhere if these items are in the environment, which is everywhere."

Now, this one is a toughie, I'll admit. I like Janna's idea of using that intense fascination as a tool to get leverage for learning to do a job based on it, but I do think that it rather depends on what the young man in question can actually make of what happens around him, and how much of that he can assimilate into his own schemata... it might well be a slow job. Or it may be necessary to work in avoidance of settings that have too many of these fascination-keepers, at least until he can be taught to handle his fascination for them somewhat better.

"How do I get him a job?"

You don't. You can't. Not because I'd doubt your skills, but purely because - as Janna's said already, it's not really for you to do. Ideally, it might be better to set up learning situations for him based on all the areas of 'being in places' that currently pose problems, so that he can be guided to some sort of better response to being in them (either purely at a conditioning level or, if cognitive development allows, at a level where he can understand why he has to behave in certain ways in certain settings). That would be a situation in which a clinical psychologist and an educational psychologist would each have very useful input, and maybe come up with a psycho-educational (teaching) programme based on promotion of learning and development of skills and abilities (the educational psychologist's side) for enhancement of his prospects in working and daily life, based on what a comprehensive assessment of needs might reveal (the clinical psychologist's side).

You might find some educational psychologists with whom your could work (in the US, you might be used to differentiating between 'educational' and 'school'; where I trained, the distinction doesn't exist).

Just a thought. And I have no idea what you'll think of this, either...

David N. Andrews BA-status, PgCertSpEd (award pending, MEd degree to be awarded Dec 2006),
Applied Educational Psychologist,
Kotka, Finland

By Anonymous, at 4:34 PM
Since I don't like taking others' credit...

That was abfh who suggested that. But I agree with her!

By Jannalou, at 5:19 PM
Oh, bugger :/

Sorry, abfh!

*bows down in contrition and utter repentance*

Well, I agree too....

David N. Andrews BA-status, PgCertSpEd (award pending, MEd degree to be awarded Dec 2006),
Applied Educational Psychologist,
Kotka, Finland

By Anonymous, at 6:12 PM
Don't worry about it, David, I guess I was being so nice and polite that I was unrecognizable, LOL.

By abfh, at 7:41 PM
Hello again,

Thank you all for the very thoughtful suggestions and comments regarding the case I presented regarding my client with the fire extinguisher/electrical outlet fetish, I sincerely appreciate your efforts and suggestions. There have been so many interesting and important issues brought up over the past several days that I regret having to let my response to most of them slide, particularly discussing Mr. Andrews' very intriguing thesis, which I would like to know more about. There are some methodological/generalization issues I would like to pursue, but that will have to come at a later time.

...When you say that you want to "get him a job," there's an underlying implication that he is not responsible for, or capable of, getting his own job. Indeed, he may not know how to find a job, but your task is to guide him through the process, not to make his career decisions for him...

I wish providing the best support for my fire guy was as easy as supporting him through an application-hiring-training process, but the intensity of his aberrant behaviors is such that he is basically incapable of exhibiting any of the prerequisite tasks needed for a supported work situation. He is nonverbal, but communicates fairly well with idiosyncratic gestures and actions if one takes the time to pay attention to him. I believe he has very god receptive communication skills, although he is not getting the sort of community support he needs to capitalize on this skill. In the state where I work, adult services for the DD/autistic population are dismal, and it is a constant struggle for me to get anyone the services and support they need and deserve. In my initial meeting with this young man and his home provider, the provider started listing a litany of inappropriate behaviors, which the young man immediately acknowledged by grunting, nodding, and exhibiting the behaviors she described (self biting, face slapping, etc.). I immediately terminated the discussion and asked the staff to call me later. When I spoke to the young man directly, it was obvious that he had a great need to express himself, but lacked the ability/augmentative devices to do so. It was incredibly frustrating for me and him.

Now, the problems - If I may be graphic, his obsession with fire extinguishers is overtly sexual (and thus socially inappropriate), and his almost immediate reaction to seeing electrical outlets is to attempt to open them and take them apart (and thus a safety risk). One of my initial clinical suggestions was to get him a part time supported employment situation in a fire station, where he would have (controlled) access to these fetishes, and hopefully he would learn some degree of socially appropriate interaction with these devices. It was attempted a few times, but due to communication breakdown he was not taken back to the fire station. Not his fault.

By my second round of interviews he had been moved to another home provider, a person with even less training and knowledge regarding autism and how to provide supports for people with special and unique needs. This is a typical occurence for individuals with challenging behaviors - they get passed around from provider to provider, until they end up with the least skillful person who will put up with their behaviors, for the monry. I made it clear to the agency that unless he was placed with support staff who were able and willing to work with him, things were just going to get worse. And they have.

I am at a loss regarding what to do for this young man, as my "state regulated, person-centered, proactive, non-punitive" behavior support plan is not working. Not because the plan is faulty, but because the implementation at the most basic level is inadequate. I know where the problem lies, but the state system is too much of a monolith to actually incorporate the required changes needed to support individuals like him. As I have stasted several times on this blog, I try to make small changes that eventually grow into big changes, all in support of the individuals I serve. But sometimes I just can't make the mountain move.

Thanks,
Behavior analyst (BTW, my name is James)

By Anonymous, at 9:32 PM
BA/James:

It sounds like you already know what the problem is: the system.

We are trying to change the system. If we can do that, then people like your client will be able to have the services that they really need.

It sounds to me like he needs a reliable & functional communication method, something that will work with people who don't want to take the time to understand his grunts etc. You can't expect to get anywhere until he has that. I suspect that once he has it, the other professionals involved in his life will find themselves somewhat shocked at the sudden decrease in "problem behaviours".

Is the staff he is now living with simply uncaring, or might you be able to teach them some things that would help the situation? Because that's probably going to have to be the first step - he needs to be with someone who cares enough to learn and implement strategies that will actually have a positive impact on his life.

If these two things can be dealt with effectively, the possibility of him actually being able to have a job opens up a lot wider.

Basically, I'm saying that I'm not surprised that he wasn't able to keep the job he had, since he didn't have a dependable communication method and the people he was with apparently didn't care enough to learn how he did communicate.

By Jannalou, at 10:48 PM
James,

I think Janna, from the work practice point of view, has more to share with you (in that she worked as a behaviour analyst for some time with a similar client group, whereas my work practice is somewhat different, and with a different type of client group). However, it does seem to me that what you and Janna and I have in common (apart from our varied background training in applied psychology) is this one factor that never seems to be ackonowledged by the system as a hindering factor: the system itself. Ultimately, this is what resulted from my dealings with the client in my thesis (essentially, case study... not generalisable unless I end up with more such clients all having the same sorts of difficulties, which would allow me a good sample from which to observe whether there are any patterns emerging - one reason for the project I hope to set up with the local adult education college at which I teach two hours a week).

In Finland, autism issues - particularly in the Asperger-autistic part of the spectrum - are poorly understood at the clinical and educational practitioner level: few teachers know anything, and many have very errant knowledge; same with clinical/medic personnel. And even when the diagnosis *can* be given, there is little to refer the client/patient on to, since nobody has adequately researched these matters here. Finnish research on autism, except for a couple of examples, has a tendency to reflect the rather authoritarian attitudes of the service providers than any aim to support the development of life-skills in childhood, let alone organise services and develop support systems in higher education (my main area of work, until my training post wound up; funding stops when the training comes to an end).

"But sometimes I just can't make the mountain move."

Frustrating, isn't it? In Finland, it's been up to the adult Aspies to develop things ourselves, since our own lobby organisation (the Finnish Association for Autism and Asperger Syndrome - yes, they want our subscriptions but don't want to do anything for them) has been very notorious for failing to advocate for Aspies :(

David N. Andrews BA-status, PgCertSpEd (award pending, being subsumed into MEd degree to be awarded Dec 2006),
Applied Educational Psychologist,
Kotka, Finland

PS: http://www.bourgeoisie.ca/ <- the Empowerment Conference Trailer tells a little about how the national organisation stiffed us.

By Anonymous, at 5:04 AM
"We are trying to change the system. If we can do that, then people like your client will be able to have the services that they really need."

As I said to James, I find that this is what we all run into... that is, I agree: it's basically systems not responding appropriately that brings about much of the problem stuff we get asked to work with in our various ways.

David N. Andrews BA-status, PgCertSpEd (award pending, being subsumed into MEd degree to be awarded Dec 2006),
Applied Educational Psychologist,
Kotka, Finland

By Anonymous, at 5:09 AM
I agree with Janna that communication is the key issue here. A person who is trained to do a job by rote, when he doesn't understand its purpose and can't communicate his wishes, is not doing meaningful work. To the extent that coercion is involved, it can be a violation of human rights. (See this post that I wrote about NAAR's use of institutionalized autistic adults, some of whom had been subjected to behavioral aversives, to stuff its solicitation envelopes.) Even without any overt coercion, it's demeaning to treat a nonverbal person as if he were a mule or other draft animal.

I'm guessing that this fellow has not been given access to a keyboard because of his fascination with taking electrical devices apart. Would it be possible to give him a robust battery-operated keyboard as a means of communicating, perhaps one intended for use by children, which he could not disassemble or break easily?

By abfh, at 11:11 AM
...Would it be possible to give him a robust battery-operated keyboard as a means of communicating, perhaps one intended for use by children, which he could not disassemble or break easily?...

It would be the ideal thing to do, but first we have to get a formal Speech and language assessment in order to determine his "level of need", then once a treatment plan is developed, Medicaid/Medicare has to decide if he even "qualifies" for Speech Therapy (they won't even allow me to call it "communication training"), and what they will pay for. then you have to purchase a device from a short list of "approved adaptive equipment", most of which are utterly useless to the individuals who need augentative devices to support their communication training needs.

In addition, there have been times when I went and bought those simple chldproof talking machines (toys) for clients, only to have an undereducated, underpaid, ego driven person-centered brainwashed sheep called a Support Coordinator come into the home and take it away from the client because he or she deemed that it was not "age appropriate". Back to square one.

As you can probably tell, I have been hitting some walls lately, and my frustration is getting the best of me. But I will keep trying.

Thank you,
Behavior analyst

By Anonymous, at 11:28 PM
James,

"As you can probably tell, I have been hitting some walls lately, and my frustration is getting the best of me."

Feeling known, pain well understood...

Wishing you best of luck getting through it (the systemm that is; not meanign to pathologise the frustration... that is natural when systems are involved).

David N. Andrews BA-status, PgCertSpEd (pending, to be subsumed into MEd degree due to be awarded Dec 2006),
Applied Educational Psychologist,
Kotka, Finland

By Anonymous, at 7:05 AM
James: Your story illustrates what we're talking about when we say that the system needs radical change. If a deaf kid who could not speak had grown up without being taught to sign, write, or communicate in some other way, everyone would be horrified at the abuse and neglect. But when it's an autistic kid, many people just don't care.

You have my apologies for the unwarranted assumptions that I made about your motives and the nature of your work in my previous post. It's clear from your comments that you are not the type of behavior analyst I was attacking (that is, the ones who happily profit from the system as it is).

Have you looked at Ballastexistenz yet? I think you would find it informative. The author is a young autistic woman who has very little speech and uses a keyboard to communicate. Before she learned to type, she spent time in institutions with unhelpful (and sometimes abusive) staff. Another autistic person taught her to communicate.

I wonder if you might be able to find an autistic adult in your community, perhaps someone who uses an augmentative communication device, who would be willing to volunteer as a mentor/tutor for your client? (Ideally, such people should be paid for their efforts, of course, but that's probably not happening any time soon.)

By abfh, at 9:43 AM
James, it's obvious that communication is the first issue for your fire guy.

Your description of "age inappropriate" communication devices being confiscated is a good example of why autistic adults are complaining about others deciding what's good for 'em. It must be maddening.

Is the young man you are talking about in that kind of environment? And BTW, does he read?

The bureacracy is hard to navigate for everyone, let alone a person with communication difficulties. It's good that you're there to identify what needs to be done.

In some areas there are assistive technology programs that are independent of public assistance. Anything like that around you?

By Anne, at 11:35 AM
James,

ABFH said: "You have my apologies for the unwarranted assumptions that I made about your motives and the nature of your work in my previous post."

I should like to add mine to hers. Your post about what you are actually getting frustrations about, because of a client who needs what a system refuses to provide, showed a side of you that I have rarely seen with many behaviour analysts who come into fora like these and interact (usually in offensive ways) with autistics, as do - in fact - many others too; you'll get to see those from time to time. Not an excuse, but in time you'll be able to see how it explains my reaction at the start.

*offers hand....*

David N. Andrews BA-status, PgCertSpEd (pending, to be subsumed into MEd degree due to be awarded Dec 2006),
Applied Educational Psychologist,
Kotka, Finland

By Anonymous, at 12:50 PM
No apologies needed, but the gestures are greatly appreciated. Looking back, my comments were quite arrogant and uninformed, and your reactions were mostly appropriate. Please accept my apologies for barging in the way I did. From reading some of the other threads, you have some pretty vicious folks to deal with, and I do not want to be in that category. I will strive to be more civil and openminded in my future comments.

As far as my fire guy goes, I will keep your excellent comments and suggestions in mind as I work with him, and will keep you posted on our progress. He is just one of many who are buried by a useless and archaic system.

The gentleman I helped get out of the institution recently is doing very well, living in a home with one male provider and no other clients. He is able to engage in his rituals without causing any distress for anyone else, and the staff have accepted a lot of his unique behaviors without pathologizing him. I am very surprised, but relieved. It goes to show that doing intensive pre-admission training and autism education for the staff can make the transitions much more successful.

Thanks again for your kindness, acceptance, and understanding, I will catch up later.

Behavior analyst

By Anonymous, at 7:37 PM
Hi James...

For my part...

"No apologies needed, but the gestures are greatly appreciated. Looking back, my comments were quite arrogant and uninformed, and your reactions were mostly appropriate."

Dunno about appropriate, but I'd say pretty natural, according to the conditioning histories we end up getting. You've seen what I mean now, I'm sure.

"Please accept my apologies for barging in the way I did."

*hangs head' Don't worry about it, James. Let's leave it all where it is, yeh?

"From reading some of the other threads, you have some pretty vicious folks to deal with, and I do not want to be in that category."

Indeed we have, and I've been routinely singled out by one or two for really vicious stuff; JBJr for one (you'll meet him around here I'm sure... )

"I will strive to be more civil and openminded in my future comments."

As will I.

"As far as my fire guy goes, I will keep your excellent comments and suggestions in mind as I work with him, and will keep you posted on our progress."

That'd be nice. I'm glad someone is doing as much as they are (namely, you, doing what you're doing). He's actually one of the lucky ones, like my client... many don't get to meet people who will end up banging our heads against these walls on their behalf.

"He is just one of many who are buried by a useless and archaic system."

I so hear you on that one. My thesis client is in the same situation... buried in a system that should have gone when Lenin did...

"The gentleman I helped get out of the institution recently is doing very well, living in a home with one male provider and no other clients."

Ah. Nice. Well done!

"He is able to engage in his rituals without causing any distress for anyone else, and the staff have accepted a lot of his unique behaviors without pathologizing him. I am very surprised, but relieved."

Surprised.... yeh, me too! But that is go good to hear. Enjoy that feeling of relief... I reckon that neither of us gets to feel that all that often :/

"It goes to show that doing intensive pre-admission training and autism education for the staff can make the transitions much more successful."

Bingo. That's actually one of my major roles just now, through my ex's business. We're trying to get Finnish providers to take up the courses that our university in the UK provides on autism issues, especially for those who work with adults. Even the top providers in Finland have no autism specific training, and I found out - much to my cost (emotionally and financially) - what the impact of that is going to be for any adult needing support services from that organisation. Turned out that, even at the time (having just got my PgCert), I was actually a more competent practitioner than was my support worker... that should *never* be possible. True, it was a unique situation, but it got to the point that, with appointments with them, I'd be getting incredibly anxious. That also should never happen. If it does, then the provider's doing something wrong.

"Thanks again for your kindness, acceptance, and understanding, I will catch up later."

No problem. You too, and thanks for joining us.

I hope that what you've done for your client(s) doesn't get undone by some tit in a suit somewhere... gotta always keep a watch out for tits in suits.

"Behavior analyst"

Applied Educational Psychologist ;)

By Anonymous, at 8:53 PM
Thesis is in.

MEd by Dec 2006 :D

DNA

By Anonymous, at 12:34 AM
Good job David -- I hope all goes as planned! Yay for you!

By abfh, at 11:14 AM
Thanks ABFH :)

Just back home from my second lesson with my current set of course participants... they loved it! Lots of humour, bit of psychology... lot of fun :)

Me very tired... me go bed soon... :/

I'm very happy though.. :)

DNA
MEd by Chrimbol! :)

By Anonymous, at 2:58 PM
Just wondering how James is....

(seemed to be frustrated beyond belief last we heard)

DNA, etc.

By Anonymous, at 7:39 PM
I'm OK, thanks for asking. Fortunately, since I am a freelance consultant I have the luxury of clocking out for as long as I need to to refuel. Over the weekend I slept for 24 out of 48 hours. Sadly I had to cancel a trip to see the future in-laws, who I really like a lot. That sort of sleeping pattern happens about once every 2-3 years for me, so I must have been at the bottom of the tank.

Today was good, got my energy back and was inspired to set up several appointments and plans to travel to two other cities for all-day consults. I have 5-6 new clients who need behavior support plans (in addition to the 12-15 I have to update), so my month is going to be busy.

I will see what tomorrow brings, and do whatever I can to make things better for someone who can't do it themselves.

And congratulations to David on getting your work turned in. I know what a good feeling that is.

James

By Anonymous, at 11:41 PM
James....

"I will see what tomorrow brings, and do whatever I can to make things better for someone who can't do it themselves."

Best wishes with that... not easy, as I have reason to know... even for the higher academic ability clients, getting institutions here to recognise their difficulties and help by levelling out the playing field is like trying sense out of John Best Junior (practically, an impossibility).

"And congratulations to David on getting your work turned in. I know what a good feeling that is."

Thanks, James... certainly is a good feeling... followed by a serious anti-climax when you get to thinking "so - what am I going to do now?"

Quite a laxative, I find....

David
who, according to current knowledge on the matter will be MEd by Chimbol :)

By Anonymous, at 2:32 AM
Well....

Thesis was accepted by the University.

I shall definitely get a Master of Education degree in December... only question is if it'll be with distinctions... my work to date suggests it may well be.

I'm 44 years old, and - had anyone said to my parents "David's going to get his Master's degree" - they'd have told that person to "fuck off".

I was never expected to get as far as I have already got.

David N. Andrews BA-status, PgCertSpEd (award pending, MEd degree to be awarded Dec 2006),
Applied Educational Psychologist,
Kotka, Finland

By Anonymous, at 1:25 PM

Whose Planet Is It Anyway?

Wednesday, August 30, 2006

One book...

59 Comments:

About

Contributors

Comments Closed

Previous