Not Even Wrong

Understanding Autism: Starting with a

Presumption of Competence

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¶ Behaviour is communication

What do you think autism is?

http://www.youtube.com/watch?v=Wv49RFo1ckQ

Watch this carefully (please).

What Is NT? Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity. Neurotypical individuals often assume that their experience of the world is either the only one, or the only correct one. NTs find it difficult to be alone. NTs are often intolerant of seemingly minor differences in others. When in groups NTs are socially and behaviorally rigid, and frequently insist upon the performance of dysfunctional, destructive, and even impossible rituals as a way of maintaining group identity. NTs find it difficult to communicate directly, and have a much higher incidence of lying as compared to persons on the autistic spectrum. NT is believed to be genetic in origin. Autopsies have shown the brain of the neurotypical is typically smaller than that of an autistic individual and may have overdeveloped areas related to social behavior. http://isnt.autistics.org/index.html

INSTITUTE FOR THE STUDY OF THE NEUROLOGICALLY TYPICAL

How Common Is It? Tragically, as many as 9625 out of every 10,000 individuals may be neurotypical. Are There Any Treatments For NT? There is no known cure for Neurotypical Syndrome. However, many NTs have learned to compensate for their disabilities and interact normally with autistic persons. http://isnt.autistics.org/index.html

INSTITUTE FOR THE STUDY OF THE NEUROLOGICALLY TYPICAL

To oppose the idea of an autism "cure” Part of the problem with the "autism as tragedy" point of view is that it carries with it the idea that a person is somehow separable from autism,

and that there is a "normal" person trapped "behind" the autism.

Being autistic is something that influences every single element of who a person is - from the interests we have, the ethical systems we use, the

way we view the world, and the way we live our lives. As such, autism is a part of who we are.

To "cure" someone of autism would be to take away the person

they are, and replace them with someone else.

http://www.aspiesforfreedom.com/

Also, funding for "cure" research is unlikely to ever produce a result. In the meantime, support services for autistic people are

underfunded. This money would be far better used to help existing autistic people.

The cure mentality also influences cultural treatment of autistic

people. Many parents focus on the idea of finding a cure for their child, and may neglect actual help and support in the process. Also, teaching children that they are "broken" and need to be "fixed" has

long-term consequences for their mental health.

Aspies For Freedom opposes the idea of an autism "cure", as a real cure would be unethical, and the current myth of the cure is harmful.

http://www.aspiesforfreedom.com/

We Thought You'd Never Ask: Voices of People with Autism

http://www.youtube.com/watch?v=dKj9NDHo8bg&feature=mfu_in_order&list=UL

If you know one person with autism,

you know ONE person with autism.

(Kluth, 2003, p. 2)

Common Characteristics of Individuals with Autism

« Movement differences

« Sensory differences

« Communication differences

« Socialization and interaction differences

« Learning differences

« Interests or fascinations

Please review Blackboard notes for further information about each of these differences.

http://www.kitonline.org/html/about/publications/Supporting-Children-with-Autism-Disabilities/index.html#/8/

Kids Included Together Sample communication strategies

Kids Included Together

Training Instructional Videos Using picture and object schedules

http://www.kitonline.org/html/training-individual/elearning-video-visual-support-nfar-qcom.html

This website is worth a look (I don’t really like the staged nature of the videos, but the strategies

demonstrated are sound and can be effective for all students). Check out TRAINING: INSTRUCTIONAL VIDEOS and FAQ.

AAC Photo Cards http://www.senteacher.org/Worksheet/6/PECS.xhtml

Language Dictionary

It may be helpful to develop a language dictionary with and for someone who is reliant on nonsymbolic means of communication.

This may help to spare the person the frustration of having new staff/people try to guess what s/he is communicating. By having communication partners ‘learn her/his language’, the person is more likely to have some control over her/his life.

It may be as simple as: Gesture What we think it means How to respond

appropriately Blinks once Yes Act on the ‘yes’.

Michael Nagle for The New York Times FIRST TIME Owen Cain in August with his new iPad.

His mother, Ellen Goldstein, and brother, Nathaniel, helped. By EMILY B. HAGER

Published: October 29, 2010

http://www.nytimes.com/2010/10/31/nyregion/31owen.html?_r=4&scp=2&sq=ipad&st=cse

IPad Opens World to a Disabled Boy

Shock tactics: Treatment or torture? Ed Pilkington visits the Boston school that uses electric shock as a treatment for children and adults with severe autism or emotional problems Ed Pilkington The Guardian, Saturday 12 March 2011

The entrance to the Judge Rotenberg Centre, in a suburb of Boston, is a riot of bright colours and surreal designs. The receptionist greets visitors from a deep purple chair in front of yellow and pink neon panels. Corridors are lit by elaborate chandeliers and lined with 6ft models of Bugs Bunny and Daffy Duck. There is a meeting space, called the Whimsy Room, that has a purple shag-pile carpet, and pink, mauve and lime-green walls hung with carnival masks. But the decor is far from the most unusual aspect of this establishment. It is the only school in the US, perhaps the world, that uses pain as a treatment for children and adults with severe autism or emotional problems. Residents at the school carry small rucksacks, trailing wires that lead under their clothes and end in electrodes attached to their skin. Each rucksack contains a box, operated by staff members via remote control. When a button on the controller is pressed, a signal is sent generating a charge that delivers an electric shock to the skin. The teachers regularly inflict electric shocks on students, some as young as eight, zapping them for up to two seconds on their legs, arms or stomach. http://www.guardian.co.uk/society/2011/mar/12/electric-shock-school-matthew-israel

External pockets, triggered by remote control, are used at Matthew Israel's Boston school in treating aggressive hand movements. Photograph: Rick Friedman

“Electric shocks only work as long as you are receiving them.

They don’t teach you how to change your life”

(Hilary Cook, 22, spent 3 years at Judge Rotenberg Centre). http://www.guardian.co.uk/society/2011/mar/12/electric-shock-school-matthew-israel

KEY POINT!!!

Punishment does not usually teach

people alternative, ‘more appropriate’ positive behaviours that are more powerful than the original

‘inappropriate’ behaviour/s.

My daughter is severely autistic. She bites herself, makes herself sick, scratches others, bites them, throws food ... She is a loving intelligent

girl who likes to please. With care and attention her behaviour can be improved and we find negative behaviour tends to only occur when she has a very good

reason for feeling the need to bite or whatever. So it is easy to tackle and manage her behaviour by talking to her,

explaining what is going on, reassuring her. We started doing this when she was very small and now that she is a

very big. strong 11 year old she has reasonably good behaviour. Giving electric shocks is disgusting and completely unecessary. It is

torture of the most vulnerable and the essence of cruelty. To an autistic child the world is frightening and confusing, bothering

to help the child make sense of that world is what these people should be doing. Making a frightening world into a living Hell is evil.

MadUpNorth 12 March 2011 6:18PM

http://www.guardian.co.uk/society/2011/mar/12/electric-shock-school-matthew-israel

KEY POINT!!!

Behaviour

IS COMMUNICATION

Therefore…

We need to try to work out what purpose a behaviour serves for

someone, then

support the person to learn new/positive ways of behaving

that are more powerful/effective than the old behaviour.

You’ve got to have something

to eat and a little love in your life before you can

hold still for anybody’s

sermon on how to behave.

(Billie Holiday, cited in Lovett, 1996, p. ix)

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Positive behavioral supports are not a quick fix or a set of rules and procedures for disciplining students with

behavior problems. The supports are based on a philosophy that places the development of

positive relationships and participation in daily life at the heart of any effort to help people with difficult

behaviors.

Positive behavioral supports are respectful of individual choices and utilize interventions that are normalized,

preventative, educational, and individualized. Nearly any specific behavior change strategy is

doomed to fail unless provided within the context of warm, caring adult-student relationships and a climate

of respect. (Janney & Snell, 2000, p. 4)

In the event of any person’s distressing behavior… We are often so ready to identify children’s ‘challenging/problem’ behavior, isolate its characteristics, measure it, and design a program to reduce it that we forget to ask the basic questions we would hope someone would ask of us, were we limited to asserting ourselves through our behaviors. These are questions such as:

?  Who is this person?

?  What important needs are unmet for him/her?

?  What would s/he change about her/his life?

?  What has changed about her/his life that may not be consistent with what s/he would have chosen?

?  With whom does s/he have meaningful relationships? (Weiss, 1999, p. 21)

The goals of positive behavioral support are…

Not simply ‘decreasing’ or ‘eliminating’ ‘problem’ behaviors, but also focus on helping students to:

q Develop new communication, social, and self control skills

q Develop more positive relationships with classmates, teachers, and other community members

q Take more active roles in their classrooms, schools, and communities

(Janney & Snell, 2000, p. 2)

Positive Behavioral Supports involves: 1. Define the problem and make decisions about priorities

2. Gather information Individual’s background/lifestyle Specific behaviors (e.g., A-B-C observation form)

3. Develop a hypothesis

4. Design a plan for positive behavioral support Prevention strategies Teaching positive alternative behaviors Responding effectively to behaviors

5. Use the plan

6. Evaluate the plan

Children's ‘challenging’ behavior can be reduced with support, not punishment

Once adults understand what children are communicating through their behavior, they can respond better. When children feel respected

and have their needs met, there is no longer a reason to use challenging behavior to communicate.

Yelling at or punishing a child for a behavior may stop the behavior for the moment, but it does not give the child support or provide

alternate ways to act in difficult situations. When adults use punishment, they are sending the message that anger is a good way to

solve problems.

When adults help children find positive ways to communicate their needs to others, children learn important social and

problem-solving skills that will help them throughout their life. http://www.pbs.org/parents/issuesadvice/inclusivecommunities/challenging_behavior2.html

CALM IN CRISIS This is difficult but it may be the best option for getting out the situation quickly and without escalation. I find that many teachers I work with agree that being calm and gentle is important but they may not always have a way of communicating and sharing this philosophy with everyone on the team. I often suggest using the CALM "checklist"- you can post this in the classroom somewhere to remind adults of helpful habits during crisis. Calm stands for: C-- calm down & try to relax as much as possible; A-- avoid physical contact (except for gently holding or hugging); team members should remember that restraint is a last resort and should be avoided whenever possible; L-- low voice: others in the room may be able to hear the child's voice but they should not be able to hear the voice of the adult; adults should whisper and be gentle with their words; M-- Manage the space and the team: If only one team member needs to respond to a crisis than only one team member needs to be in the space. Keep extra adults away and preserve the person's dignity. Have a code word or gesture to indicate calmly "I need help". Keep in mind-- the one goal in crisis (and the one goal that will profit everyone involved) is to get out of crisis-- it is not to teach, enforce or reinforce. http://www.facebook.com/photo.php?fbid=421537097360&set=a.270879632360.139442.270873272360&theater

C omfort

A void contact

L ower voice

M anage space & people http://www.facebook.com/photo.php?fbid=421537097360&set=a.270879632360.139442.270873272360&theater

http://www.google.co.nz/imgres?imgurl=http://2.bp.blogspot.com/_ISSia8AAv_w/ScGWHgT8KCI/AAAAAAAAAjU/2gyoTD8PeWw/s400/Keep%2BCalm%2Band%2BCarry%2BOn%2B%28red%29.jpg&imgrefurl=http://thegentlerant.blogspot.com/2009/03/keep-calm-and-carry-on-nothing-to-

see.html&h=400&w=336&sz=26&tbnid=6UO9qH7t5u_N6M:&tbnh=124&tbnw=104&prev=/images%3Fq%3Dkeep%2Bcalm%2Band%2Bcarry%2Bon&zoom=1&q=keep+calm+and+carry+on&hl=en&usg=__K_H49KmUyOfjpW1qRT-2Jdgt96I=&sa=X&ei=nxmZTf--GIe4vQOFk636Cw&ved=0CFMQ9QEwCQ

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s In my shoes http://www.inmyshoes.co.nz/index.html Kids included together (kit) http://www.kitonline.org/index.html Kluth, P. (2003). “You’re going to love this kid!” Teaching students with autism in the inclusive classroom. Baltimore: Paul H. Brookes. Paula Kluth http://www.paulakluth.com Temple Grandin http://www.templegrandin.com/templehome.html SEN teacher (useful AAC pictures) http://www.senteacher.org/Worksheet/6/PECS.xhtml

Kamran Nazeer

Paul Collins

Jodi Picoult

Temple Grandin

Although most people with autism will you that “it” is real, that they do experience things in different ways, that their

bodies are uncooperative, or that they have sensory or communication problems, it might also be suggested that

autism is in some ways exacerbated by an inflexible society.

That is, autism is a social construction; it is a phenomenon that is created and recreated through culture, interaction,

and social circumstances ….

Jonathan McNabb, a man with autism, suggested that “neurotypical” individuals (people without autism) stop

assuming that difference means deviance and start understanding the autistic experience from those who live

with it. (Kluth, 2003, p. 19)

http://www.youtube.com/watch?v=Wv49RFo1ckQ

Watch this carefully (please).

“…the obligation of educators is always to

presume competence or educability and then to discover ways a student

may achieve it.” (Biklen, 2000, p. 446)

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The rest of the slides are for students’

information/interest. J

Movement differences may involve:

Excessive, atypical movement and loss of typical movement, which may affect a person’s:

«  posture (e.g., walking with uneven gait)

«  actions (e.g., rocking, hand flapping, pacing)

«  speech (e.g., unintentional, repetitive)

«  thoughts, perceptions (e.g., difficulty knowing when to start or stop activities), emotions, and memories.

Movement differences

Such differences may affect

«  communication and

«  mask a person’s competence (e.g., an observer may misinterpret movement differences for inattention or inability to understand).

I never really know when sounds are coming out of my mouth or when my arms need to move or when my legs need to run and jump. I also have a hard time controlling my thoughts when someone is not helping me focus. You see my mind is very active and thoughts jump around like popcorn being popped. I have very interesting thoughts. It’s just that they keep firing off so fast that it’s hard to stop them unless someone helps to focus my attention on something. You can imagine how hard it is to get anything done with a roller coaster mind without any clear destination.

My eyes are unable to move up and down and left to right at will without me moving my head in the directions I’m facing. I can see things really well from the corner of my eyes. When I look at someone facing me sometimes I see three eyes instead of two, and it looks scary so I avoid directly looking at people sometimes. This makes it hard for people to know whether I’m paying attention.

(Fihe, 2000, cited in Kluth, 2003, p. 12)

Sensory differences may involve:

« Increased or decreased sensitivity to sound, touch, smell, sight, or taste, or difficulty in interpreting or processing a sense.

« This may lead to anxiety or fear (e.g., of particular sounds that may seem benign to most people).

One common effect of these heightened senses is that autistic people are vulnerable to sensory overload with continued

low-level bombardment. This may also result from too much emotional or social stimulation. Autistic people may become overloaded in situations that would not bother (or might even entertain) a normal person. When overloaded, autistic people have trouble concentrating, may feel tired or confused, and

some may experience physical pain. Too much overload may lead to tantrums or emotional outburst. Another result of too

much overload may be “shutdown,” in which the person loses some or all of the person’s normal functioning.

Shutdown may feel different to different people, but is extremely unpleasant.

(Blackburn, 1997, cited in Kluth, 2003, p. 13)

Communication differences may involve:

« Little or repetitive speech.

« Difficulties with expressive and/or receptive communication.

« Difficulties in following language “rules” (e.g., using pronouns, jokes, metaphors).

« Use of augmentative and alternative communication devices (e.g., picture symbols, typing).

Being mute is like having your brain gouged out. Autism/apraxia took away my voice, and a world that equates

muteness with stupidity took everything else. Yes it really is as if my brain were gouged out. It hurts so much I want

to scream. Pouring all my pain into my voice I want to scream till that searing sound fills my body, my soul and my world shattering us all into a million fiery shrieking

pieces.

As an experiment, just try keeping your mouth shut for a day. Just try keeping your mouth shut while they talk about you, telling your mother to put you away in an

institution. You want to scream “no no no” but you are mute.

(Rajapatirana, 1998, cited in Kluth, 2003, p. 114)

Just because we don’t speak doesn’t mean we

don’t think.

Socialization and interaction differences may involve:

« Difficulty in reading/interpreting social signals.

« Difficulty in initiating social interaction.

« Ambivalence in developing relationships (e.g., a person may want to be with people, but finds the noise of crowds and/or understanding the rules of social interaction stressful).

For me, successful “social” contact depended on someone else interpreting my own signals. Some of my attempts at communication were fairly conventional, as when I put my arms up towards a person with my hands stretched up because I desperately needed to be picked up or lifted over an obstacle. However Jay noted that if I turned my hands outward when I put my arms up to her, I was asking for a boost for a somersault, rather than some help in climbing up. If she interpreted wrongly, things could get very noisy. (Blackman, 2001, cited in Kluth, 2003, p. 16)

Over the years, I tried to contain my excitement and joy over life’s happenings and watched to see what makes other people happy or sad. If they laughed or were unmoved, then this was my signal that it was alright for me to do likewise. This process was hard work and although it helped me to be more observant of others, it robbed me of spontaneity and enjoyment of the richness of my own experience. (Lawson, 1998, cited in Kluth, 2003, p. 99)

Learning differences may involve:

« Difficulty in processing material

« Difficulty with memory

« Assumptions being made that the person is “incapable of understanding”

Messages can be sorted inefficiently so that they are related badly. This is like putting a call through to the wrong number or the next-door-

neighbor’s house instead of your house.

These are what I call “misfires.” Some examples of these in my own life have been where I’ve come up with words or names that have a similar shape, pattern or rhythm to one I am trying to recall without being similar in meaning. I’ve had this trouble with names such as

Margaret and Elizabeth because they seem to have the same feel and seem similar to me.

In the same way, I’ve said things like “I want my shoes” when I meant “I want my jacket” and been surprised to get things I apparently asked

for. (Williams, 1996, cited in Kluth, 2003, p. 16)

Interests or fascinations may involve:

« A deep interest in one or a variety of topics (e.g., trains, computers).

« Misinterpretation of such interests by others, who may try to curb an interest, rather than use it in positive, constructive ways.

« Identification of the “good and bad parts of obsessing”, to help individuals “live in concert with their interests” (Kluth, 2003, p. 18).

I have a question for teenagers here.

Q: When is an obsession not an obsession?

A: When it is about football.

How unfair is that? It seems that our society fully accepts the fact that a lot of men and boys “eat, sleep, and breathe football” seem to think that if someone doesn’t, then they are not fully male. Stupid! (Jackson, 2002, cited in Kluth, 2003, p. 17)

At the base I have to wonder, are we so very different from marathon athletes, corporate presidents, bird watchers, or new

parents counting every breath their newborn takes? It seems lots of people, NT [neurotypical] or otherwise, have an obsession of sorts. In my mind, that reality rests as a good one, for obsessions in and out of themselves are not bad habits. There is much good

about them.

Obsessions take focus and tenacious study. They are stuff greatness needs. I have to believe the best of the remarkable—

the artists, musicians, philosophers, scientists, writers, researchers and athletes—had to obsess on their chosen fields or

they would never had become great. In some respects, then it must be said that obsessions do not have to be considered

handicaps. (Willey, 2001, cited in Kluth, 2003, p. 17)