Tuesday, March 10, 2009

Autistic children in tiny, windowless rooms

Two UK sources, here and here, report the same story: a young autistic girl, Melanie-Rose Wichmann, was "shut in a tiny, windowless room for getting upset at school." She "begged to be let out." She "has suffered anxiety attacks since the incident in February last year."

A judge ruled that shutting Melanie-Rose in that "tiny, windowless room" was discrimination based on her disability. An autistic child "should not have been left, even briefly and for the best of motives, alone in a small room from which she could not get out."

Melanie-Rose's mother is quoted as saying: "I know that despite what anyone says, regardless of their disability, you don't treat children like this. I wanted to fight this no matter what. I wanted to fight for her and for all the other kids out there in similar situations."

Not so long ago, the Boston Globe reported on practices at the New England Center for Children, a school that uses ABA-based interventions with autistic individuals. The NECC is one of the most admired, most popular, most important, and most influential (in research and practice) ABA schools in the world. Here is how the Boston Globe story starts:

When a particular student acts up, Amy Giles sometimes places the girl in a tiny, windowless room and closes the door. Then Giles stands outside the closet-like chamber, waiting patiently until the child settles down.

If it were another child, it might seem cruel. But Giles, a Westborough resident, is probably that student's best chance for a quality education. Giles teaches at the New England Center for Children on Route 9 in Southborough, a school that is at the forefront of educating children with autism, a neurological disorder that dramatically inhibits the way a child learns.

"We don't want to be the biggest program for autism," said Judy Cunniff Serio, director of administration. "We want to be the best."

27 comments:

MalchowMama said...

"If it were another child it might seem cruel." But it's an autistic child, so that's OK.

Nix said...

I suspect the ABA people don't grasp the fundamental distinction between *choosing* to go into a small quiet room on your own, and being forced in there and locked in.

One wonders if they recognise the distinction between a school and a jail... or whether, as MalchoMama suggests, they might recognise it *only in non-autistics*.


(and it's great to see you blogging again!)

Michelle Dawson said...

In response to MalchowMama, for an autistic child, being shut into a "tiny, windowless room" at the NECC is "medically necessary" treatment, so long as it's within an ABA program.

In response to Nix (thanks for the kind words...), when an autistic child was shut into a "tiny, windowless room" in an ABA program in a famous ABA school, this was regarded as the child's "best chance for a quality education" within a school "at the forefront of educating children with autism."

But I was interested to see that elsewhere, a judge ruled that this same practice, shutting an autistic child into a "tiny, windowless room," is unacceptable and constitutes discrimination on the basis of disability.

AnneC said...

What's also incredibly disturbing are some of the comments on the Daily Mail article. Like one which says, "Many autistic children feel no empathy for others or guilt for wrongdoing." Some of the comments are reasonable but overall there's a veritable showcase of negative stereotypes about autistics and what we supposedly "need" in order to (I guess) not "take away from the education of normal students" and be properly "controlled".

Autism Reality NB said...

You are misrepresenting ABA by trying to tie it to this situation.

Your anti-ABA obsession is not helping autistic children who have benefited from ABA instructon.

Joseph said...

You are misrepresenting ABA by trying to tie it to this situation.

How so, Harold? Elaborate. Is the New England Center for Children not a good ABA school?

laurentius rex said...

It is not just autism either, institutional abuse is rife and largely ignored by OFSTED who seem like the three wise monkeys in this respect

An investigation into the methods of handling pupils at a Milton Keynes school for boys has revealed children were regularly forcibly restrained.

http://news.bbc.co.uk/1/hi/england/beds/bucks/herts/7920124.stm

A girl with special educational needs who was repeatedly restrained by school staff has lost a discrimination case.

http://news.bbc.co.uk/1/hi/education/6433695.stm

Both of these cases are in Bedfordshire but if you type in schools and restraint into the BBC site you will reveal many more examples.

Something is rotten with the state of Education in this country.

Michelle Dawson said...

I too would like to know where, according to Mr Doherty, I have "misrepresented ABA" in this blog post.

Mr Doherty has taken the position that accurate reporting (which can be verified from primary sources) from the ABA literature is an "anti-ABA diatribe" (see the comments here).

Now is Mr Doherty saying that the NECC is not a popular, highly-regarded, influential ABA school? Or that it is, but in the current era of autism advocacy (of which Mr Doherty is an important leader), it is an "anti-ABA obsession" to say so?

KeithABA said...

I know nothing of this school in the reports, but I do know of the NECC and will continue to support their use of time out as long as other less restrictive interventions have failed.

I think it is also far less traumatic for a child to be in a time out, than to be spanked or physicall restrained.

Finally, no one discusses the other children and disruption of the learning process for them. Should the teacher change the lesson plan because 1 student became upset? Should they allow the child to disrupt the class and just wait until she is ready to go on with the lesson plan? When does a behavior problem become significant enough to warrant a punishment procedure?

Your not an advocate unless you advocate something. So where are all the proposals as to what the teacher should have done instead?

KeithABA said...

It's also clear from the article, that this teacher doesn't have or use many other strategies to deal with challenging behaviors as evident from this statement:

"In one incident in October 2007, Mrs Pearson tore up one of Melanie-Rose's certificates for good behaviour in front of her and the class, Mrs Wichmann said. On another, she locked Melanie-Rose outside the classroom during teaching time, later admitting her actions had been 'inappropriate'."

Use of Time out at the NECC is systematically done, faded out and not the primary strategy for reduction of the behavior, never done for 10 minutes, and data is also collected to assure it is effective for the behavior that is targeted for decrease.

KeithABA said...

one final note, I retract the statement about never done for 10 minutes. I have no data or way of knowing the duration, but the general reccomendation for time out is only a few minutes.

Clair Robertson said...

Hi

My name is Clair Robertson and I am currently involved in a community project entitled El Portavoz (The Spokesperson) - a free monthly newspaper that publishes topics in the field of disability in Costa Rica, Central America.

We currently celebrated our first year anniversary of being in print and our team consists of 11 people, 8 of which have a disability.

Thanks to the work of various collaborators, who have a disability and other people that share our vision of educating the public to the right of equality, we have created a successful organization, where the voice of people with disabilities is heard and respected.

Our team of collaborators covers various news topics internationally and we were told about your webpage.

We feel that your work is of great importance for the community and of great interest here in Costa Rica.

For International Awareness Day for Autism on the 2nd April we are looking to include an article.

Would you be interested in writing a small article of about 300/400 words. It could be about your opinion relating to stem cell research in Costa Rica regarding autism?

We will of course send you a copy of the edition.

Thanking you in advance for your kind colaboration.


Clair Robertson
cmrobertson@elportavoz.com
info@elportavoz.com

Michelle Dawson said...

In response to Keith ABA, mostly, I'm not an advocate. But I am concerned (as a researcher and human being) about autistics being denied the benefit and protection of recognized standards of science and ethics.

Keith ABA's position is familiar, similar to what was stated in Lovaas (1987) and related papers (Lovaas et al., 1987; Lovaas & Favell, 1987) about the necessity of hitting preschool autistic children (and hitting them "hard"; see Leaf & McEachin, 2008). Is an intervention for preschool autistic children effective, and ethical, if it requires hitting these children "hard"?

Similarly, is the NECC's ABA intervention program effective, and ethical, if it requires that young autistic children be shut into a "tiny, windowless room"? Keith ABA says, yes it is. I disagree.

Keith ABA also takes the position that the only possibilities for autistic children are: restraints, aversive procedures (hitting the autistic child), or shutting the autistic child into a "tiny, windowless room." Here again I disagree.

KeithABA said...

You should write for a newspaper Michelle, because you are so good at taking what I said and twisting it to fit your motive.

"Keith ABA also takes the position that the only possibilities for autistic children are: restraints, aversive procedures (hitting the autistic child), or shutting the autistic child into a "tiny, windowless room." Here again I disagree."

I did not say that at all. In fact during my career I have been a primary proponent of getting institutionalized autistic adults out of restraint.

I have repeatedly stated on your blog that I am opposed to physical coercion, but yet you lump me into a category with Lovaas.

Finally, I also have stated many times, but you continue to ignore, that time out is only used if other less restrictive inerventions are not effective. That includes a range of reinforcement based procedures including: NCR, increasing mand repetoires, FCT, DRA, DRO, and DRI. NONE of which include a punishment procedure, and all of which have been shown to be effective through years research with within subject designs.

Michelle Dawson said...

In response to Keith ABA, that is some impressive mentalizing, re my "motive." Unfortunately, what I wrote was entirely based on Keith ABA's statements, including:

"I think it is also far less traumatic for a child to be in a time out, than to be spanked or physicall restrained."

And:

"I do know of the NECC and will continue to support their use of time out as long as other less restrictive interventions have failed."

Nor did I put Keith ABA in a "category." Views very similar to his re the necessity and acceptability of shutting autistic children into a "tiny, windowless room" have been expressed in the ABA literature with respect to the necessity and acceptability of hitting preschool autistic children "hard." This can be verified by reading the sources I provided.

Several papers in the ABA literature report the use of punishment (including the use of basket holds, which have been fatal, as punishment; Fisher et al., 1993; Hagopian et al., 1998; Fisher et al., 2005) with FCT, just to give one example.

I'm not sure whether Keith ABA is saying that all behaviour analysts involved in publishing FCT-plus-punishment studies (that would include authors, funders, reviewers, journal editors...) were grossly unethical, given that punishment, including extreme forms like basket holds, was totally unnecessary and therefore gratuitous.

Also, the procedures listed by Keith ABA have been shown to be "effective" (by ABA standards) only in research that, in areas other than ABA and autism, would be regarded as overwhelmingly poor quality (quality encompassing standards of science and ethics), both as individual studies and as a body of research.

But if Keith ABA is claiming that all these ABA procedures are effective (by ABA standards), it is unclear why he also supports the shutting of autistic children into a "tiny, windowless room" at the NECC, a famous ABA school.

KeithABA said...

Re post:
Finally, no one discusses the other children and disruption of the learning process for them. Should the teacher change the lesson plan because 1 student became upset? Should they allow the child to disrupt the class and just wait until she is ready to go on with the lesson plan? When does a behavior problem become significant enough to warrant a punishment procedure?

How about an answer?

KeithABA said...

"I think it is also far less traumatic for a child to be in a time out, than to be spanked or physicall restrained."

And what is wrong with that statement. You forget that in the real world, (not internet fantasy land) children and adults are being restrained. Children and adults are being physically hit by their parents or gaurdians to stop problem behaviors. So, when I have to consult with these parents, I would much rather them use an EVIL UNETHICAL time out, than corporal punishment or restraint.

But you won't respond to that either will you?

Michelle Dawson said...

In response to Keith ABA, I disagree that a good response to an upset autistic child (one who is crying) is to shut that child into a "tiny, windowless room."

Keith ABA wrote, "But you won't respond to that either will you?"

I already have. If the ABA-based intervention provided by the NECC necessitates shutting autistic children into a "tiny, windowless room," as seems to be the case, then there is something seriously wrong with that intervention. But I'm repeating myself.

momofsteven said...

my son's autism comes from his father, uncle, grandfather and great-grandfather. It is hereditary and the only way to eliminate autism in the family is to sterilize everyone in the family. Sounds like Nazism to me.

Michelle, I have read your paper "The Level and Nature of Intelligence in Autism", is there some way I could contact you (email) so I can talk more about the paper?

Michelle Dawson said...

In response to Momofsteven, you may have meant to post that comment here, in which case I could have pointed out that in Alberta, individuals deemed to be disordered, inferior, abnormal, etc., were force-sterilized, up to the 1970s.

Among other places, you can find an email address for me from every article (scroll to the bottom...) on this site.

Dr Chun Wong said...

That is more than time-out, it's solitary confinement and is not right for any child. It is sad that the teacher has to resort to that type of behavior management.

Anonymous said...

I think this sums it up best about the rote, dated procedures used at NECC and Keith sounds like a typical rote, brainwashed NECC therapist.

What a disturbing place. Does NECC even look at the function of the behavior before throwing the kid in the windowless closet? For a school that claims to use strict data based procedures (which is their reasoning for refusing biomedical intervention there) these clueless wonders should know that there is NO data to support the use of exclusionary time out.

Thursday, August 30, 2007
August 2007 Opinion and Commentary
Isolation: It's not punishment; it's "removal for reinforcement"

Commentary by Jennifer Searcy
August 2007

From the Boston Globe:

School expands on mission to aid autistic children

When a particular student acts up, Amy Giles sometimes places the girl in a tiny, windowless room and closes the door. Then Giles stands outside the closet-like chamber, waiting patiently until the child settles down.

If it were another child, it might seem cruel. But Giles, a Westborough resident, is probably that student's best chance for a quality education. Giles teaches at the New England Center for Children on Route 9 in Southborough, a school that is at the forefront of educating children with autism, a neurological disorder that dramatically inhibits the way a child learns.

"We don't want to be the biggest program for autism," said Judy Cunniff Serio, director of administration. "We want to be the best."

So when Giles sends her student into that tiny room, it isn't punishment. It's a treatment called "removal for reinforcement" for a girl with autism who exploded because it was time to move from one lesson to the next. Without the serenity of the room, Giles's student might never regain the focus she needs to continue a day of learning.

"She has a little difficulty with transitions," Giles said, not without compassion.

Click link for full article: http://www.boston.com/news/education/k_12/articles/2007/08/09/school_expands_on_mission_to_aid_autistic_children/

There are a few upsetting things about this article. First is that this school seems to think it's ok to place children with autism in isolation rooms, because after all, they're autistic. They can't be expected to be treated with the same dignity and understanding as "neurotypical" or even other nondisabled children, because they're "autistic" (sarcasm fully intended).

For the record, "autistics" aren't the problem; it's individuals who don't know how to communicate with them that's a problem - either unintentionally or deliberately - and that's understanding that a child with autism may react with aggression when met with aggression. It's because the people who worked with this little girl refuse to learn how to speak "her language" [credit to Amanda Baggs, a "nonverbal" adult with autism] that this little girl is punished for behaviors directly related to her disorder, which, by the way, is illegal.

Next, how is "isolation" therapeutic in this incidence? The little girl in question has been identified as having difficulty with transitions, as do many idividuals with autism. As a person with autism, she also has difficulty communicating in a way that "neurotypicals" understand, and so uses "behaviors" to communicate. If they know she has "a little trouble with transitions" and communicates the feeling of discomfort, unreadiness, or unpreparedness by "acting out," why aren't they using that knowledge to develop a "functional behavior assessment" to determine what "positive behavioral interventions" and techniques could be used to ease her into transitions, such as the use of a timer or countdowns, frequent verbal reminders, a pictorial schedule which she personally can use (PECS, etc.) or other techniques that are proven to be effective in addressing transition issues, and provide her with alternatives to communicating her needs, such as how to say she isn't ready to "transition," or maybe she just needs more time to process what was asked of her, rather than adult, teacher-enforced isolation, which research does not prove to be as effective as positive behavioral interventions, interventions which are to be used in accordance with IDEA law?

Using isolation is not going to address two of her core deficits: a problem with changes in routine and communication. How is she ever going to be a productive member of society if she's not given the "tools" or "skills" to become better adapted to change? No, let's just treat her like a common criminal and lock her up in this tiny room until SHE calms down.

Putting her in this room may only be reinforcing the very behaviors they wish to "extinguish." Maybe she's come to associate transitions with isolation, and so communicates her fears the only way she knows how, by exhibiting "behaviors" relating to the natural "fight or flight" instinct, or maybe she's communicating by exhibiting "behaviors" to "explain" that she's not appropriately prepared for a change in routine at that time, but maybe would be with appropriate preparation; instead, they "treat" her "behaviors," her attempts at "communication," with isolation. They've said it themselves, "removal for reinforcement." They are using isolation to "reinforce" negative behaviors instead of "reinforcing" and "rewarding" positive behaviors. This child is destined for failure under this plan.

I'm tired of children and adults with autism being blamed for their "behaviors." Those "behaviors" are their way of communicating with us. Are they always appropriate? NO. Can we always figure out what they're trying to communicate? NO. Can we give them tools and skills and other methods to communicate more effectively? YES!!! But we "neurotypicals" who work with children with autism also need to take ownership of OUR OWN ACTIONS and yes, even OUR INABILITY to understand what they're trying to say, THEN we will see change for the better. It's time to stop "passing the buck" for OUR inadequacies and blaming individuals with autism.

Sorry, but if this school wants to be the "best," they need to try harder and stop punishing kids with autism by putting them into seclusion. Sounds like they're doing a lot of things right, but they also have a ways to go.
Posted by FamiliesAgainstRestraintandSeclusion at 10:57 PM
Labels: Commentaries and Opinions

Anonymous said...

Their restraint procedures in the group homes sound great too. (sarcasm) Unfortunately this kid died as a result.

Anonymous said...
And when the kids get so out of control isn't wonderful to know that places like this (NECC was called New England Center for Autism back then) resort to such restraint that the child dies. Completely sickening.

COALITION AGAINST INSTITUTIONALIZED CHILD ABUSE
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Database
http://www.mentalhospitalabuse.org/web%20docs/Courant/death_data.htm

Data Key:
N/A -- Information not available
P -- Physical restraint hold | M -- Mechanical restraint | S -- Seclusion
H -- Hospital | R -- Residential facility
(list has been modified to reflect only children and young adults ages 6-19)

Name
Age
Sex
State
Date
Method
Institution
Type
Notes on death
Cause of death


Bogrett, Jeffrey
9
M
MA
12/1/95
M
New England Center for Autism
R
New Hampshire boy died in restraints at a Massachusetts group home.
Sudden death during restraint

Tue May 13, 10:05:00 AM EDT

Anonymous said...

NECC is a research based institution and a child seems to be nothing more than a piece of raw data to them. I have had parents tell me that once they are in NECC the lack of good clinical oversight and poorly trained teachers is common. Reactive techniques seem to be a favorite there--such as placing a child in a windowless room rather than painstakingly teaching a child to communicate and looking at the real reason for the behavior in the first place. That would take too much time and energy. Easier to just put them in a time out room. They seem to forget that most behaviors are driven by an inability to communicate so how does NECC think locking them in a time out closet is going to help decrease the problem behavior? Rote ABA from 20 years ago--that's NECC in my opinion (and that of many others in the industry!) But hey, keep adding attractions like new pools NECC since marketing is the name of the game there.

Anonymous said...

This comment sums up NECC.

September 8, 2007 - 1:50pm.
Both Gina Green and Brian Iwata are hypocrites because they both have been affiliated with the New England Center for Children (NECC), which is even worse than the J. Rotenberg Center (JRC). At NECC they have a staff-intensive unit for children with self injury - the problem is that most intakes into the staff intensive unit come from other least restrictive units at NECC. That means that they are the ones reinforcing self-injury. Then after they have built up a huge history of reinforcement for these behaviors over the years, and the kids become bigger and the behaviors less manageable, who do they call to take these children? - The Judge Rotenberg Center.

Ettina said...

"Finally, no one discusses the other children and disruption of the learning process for them. Should the teacher change the lesson plan because 1 student became upset? Should they allow the child to disrupt the class and just wait until she is ready to go on with the lesson plan? When does a behavior problem become significant enough to warrant a punishment procedure?"

Well, it certainly has to be more severe than just crying and hand-flapping.

Firstly, *was* her behavior disrupting the class? Did anyone actually ask the other students if they found it harder to concentrate? Did they observe a reduction in educational output or time on task? Or did they just assume?

Secondly, *why* was she crying? In my work with autistic and other children, I've found that asking 'why' is crucial to managing any behavior. And most negative behaviors, if you understand them, can be prevented.

Thirdly, sometimes the autistic child is the 'canary in the coal mine', protesting something that other kids silently put up with. So maybe the teacher should have changed the lesson plan because one student protested.

And fourthly, does punishment actually do anything to prevent this behavior? It seems not. In which case, they're just putting a child through suffering for no good reason. If a behavior is problematic, punishment can reduce it and the possible side effects of the punishment are outweighed by the benefit, then I support punishment. But if the punishment doesn't work, then it doesn't matter how severe the behavior is - it doesn't warrant an ineffective treatment. If nothing works, you may settle for containment if the behavior is severe enough (I'm talking potential to harm self or others, not just disrupting class). But chances are, if you get out of the rigid 'punishment-only' mindset, you'll find *something* that works.

Anonymous said...

Anonymous said...
One of the best descriptions of NECC that I have ever seen. What a hell hole:


I have to pipe in about NECC as well.

From what I've seen over the past four years as a resident of Massachusetts with two effected children, NECC seems to be the enemy. It seems to be the kind of place where some families can feel they're having a benign, even helpful experience while horror is going on just down the hall. The use of drugs, restraint and food reinforcements known to be toxic to our kids is part of it, but it's also the fact that NECC emits a distinctly malevolent "political" and ideological influence on autism services in the state. Here's a sample of NECC's research newsletter entries: http://www.necc.org/research/newsletter.asp

Note the number of anti-biomed/vaccines-really-really-don't-cause-autism articles, and the one I particularly like for it's "sophisticated ironic play" on David Kirby's book, an entry entitled "Evidence of Harm"-- to describe the child who died from chelation. This is not the publication of an open minded, non-politicized organization that will ever change its mind or its tact on cause and treatment of autism. Stick a fork in NECC, they're cooked and the world would be better off without it.

We've had to fire more than one private ABA therapist because the anti-biomed brainwashing they received at NECC made them literally dangerous to our kids. In one situation, the BCBA deliberately wore clothes soaked in fabric softener to follow up her written protest against our request that therapists not wear strong perfume because of our kids' serious reactions to synthetics. One therapist received such a scary brow beating from the NECC-trained director of the service over our children's biomedical issues (the director was yelling that our kids "have no medical issues") that she had to quit and decided to return to school so she could get out of ABA altogether.

Though I've met parents who have their children at the school who opt out of drug treatment, NECC pushes and prescribes antipsychotics and other drugs routinely. And when the children don't improve from the Skittles reinforcements and Risperdal regimen, the center has referred the failures to the Judge Rotenberg "shock" Center (page 3 of JRC's own "executive summary" on some of NECC's referrals: http://www.judgerc.org/posonlyprograms.pdf ; then go to page 7 for details of NECC students being drugged and restrained up to 70 times per week ).

JRC is the repository for children so drug damaged that they'd die if they took another pill but who's behavior has become so problematic that no other institution will take them. I view places like NECC as a kind of "feeding tube" for places like JRC, both because NECC exerts its considerable influence in preventing further research on environmental cause and because of its practices. So much for NECC's "positives only" philosophy if they drug and restrain to this degree and if the end result is landing at JRC. Positives only is a mischaracterization.

NECC is funded in part by Dunkin' Donuts, so I seriously doubt they'll ever change their credo on GF/CF and biomed. I would run steer clear of anything that NECC was intrinsically involved in. I don't particularly care how "great" they are at providing ABA (and I question this because of little things like the fact the school would rely on antipsychotics and would *RESTRAIN A CHILD UP TO 70 TIMES A WEEK BEFORE IT WOULD EVER TRY GF/CF*-- sheesh)considering the other drawbacks in their philosopy and approach.

Posted by: Mass protest November 24, 2009 at 12:25 PM