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Doogri Institutehttp://doogri.wordpress.comThe Doogri Institute conducts research to assist in the design and implementation of arts training and music community. All Doogri researchers are leading experts in their field, with critical research augmented by lived experiences.

Presenting While Autistic – Top 10 Red Flags of Tokenism and Exploitation of Autistic Professionals

by
Henny Kupferstein presenting her most recent research at CalState Chico Autism Conference, 2018

Henny Kupferstein presenting her most recent research at CalState Chico Autism Conference, 2018

You were invited to present at your local community college event. This feels like a high moment for you. Being autistic has set you apart from your peers, and may have made your climb to standardized norms more challenging. You may have personally experienced the rush of joy when your interests and aptitudes gave you an edge over your peers.

Today, you find yourself to be a professional scholar, practitioner, parent, or researcher, and also autistic. That invitation feels nice. So what could possibly go wrong? One red flag would be the reassurance that the ABA promoters in the conference lineup are there because people really want to “hear all sides” in addition to yours. You may feel confused and uncomfortable when they remind you that you may only use person-first language, and to avoid the word “autistic”. You begin to wonder if you would’ve been invited to give this talk if you were not autistic.

“Sometimes when people say ‘tell us your story’, what they really mean is “tell us what we want to hear.” ~ Jim Sinclair

If the talk is specifically about the autistic experience, any speakers who aren’t autistic themselves would be a questionable choice for the organizers. If the agenda of the event is to hear from “a person living with autism” and you are invited specifically because you are both autistic and a professional, then your sharing of your lived experience should be completely uncensored.

If the conference is about people showcasing their professional accomplishments and making recommendations to the field of autism, then this is how you’d recognize when your autisticness might be the only reason you were invited to this speaking engagement:

  1. You are not treated as your professional colleagues are—you are addressed as an autistic individual rather than a professional, or without referencing your academic credentials.
  2. The agenda of the event is to hear from “a person living with autism” and not about you as a professional. When you wish to present on your professional accomplishments, you are told that maybe next time, they can try to see if the conference has room for your research, which they profess to have not read at all.
  3. The organizers claim to have a “minimal” or “no budget” for bringing you in, yet the event features motivational speakers who travel and lecture for a living, and often require a booking years in advance.
  4. The conference headliner is an autistic celebrity who never published scientifically valid research about autism (or maybe they only published about cows in their career).
  5. You are told that you have been “curated” by someone on the board or the planning committee.
  6. You are offered free entry to the entire event “in gratitude” of your contribution.
  7. You are not asked when you wish to present, but are placed in a spot or locale that might not accommodate your sensory and functional needs.
  8. The advertising material promotes your autism as your attribute, instead of your submitted professional bio.
  9. You are listed as a footnote, while the person who “found” you is in the title of the event. Meaning, they are taking the credit for the content you will speak about.
  10. The event is about autism and employment, but autistic presenters are not paid.

Why These Autism Employment Issues are Problematic

They are asking you to present because you have “personal, lived experience” and not because they want to hear how your experience has informed your practice as a professional. They don’t want to hear about your comorbidities, all the ways you are masking and exposing yourself to sensory violations to deliver your presentation. The work you identify with is irrelevant, because you are primarily brought in as the diversity token on their agenda.

They want to hear about the shiny ways you overcame obvious stereotypes. The therapists in the audience are hungry to congratulate themselves for the work they are doing with people like you, and the parents are hoping that their children will acquire a semblance of presentability, the way you have. Overall, they are hoping you will make them feel more inspired just because they made the effort to listen to one autistic person.

“I don’t tell my story to teach. That would be free emotional labor.

If anyone learns from my words, that’s because they choose to listen.” ~ Amy Sequenzia, Author

They’re not looking for #ActuallyAutistic professionals. They are not #AskingAutistics to share their work. They just want to fill their quota and earn their benevolence brownie points. As for you, know that the IRS declaration for speaker honorarium should also include travel, lodging, and meal reimbursement, reported as “non employee compensation”. Do you have examples of how you may have been taken advantage of? Please share your experience with tokenism and exploitation on the basis of your diagnosis.

Recommended Reading:

About the author

Henny Kupferstein is a doctoral candidate in psychology with a specialization in autism research. As an autistic scholar, her activism resulting in the Autism Action NY legislative package to be introduced to the New York State Assembly. Henny is passionate about equal access to arts and education for all types of learners, as well as access to music making by people with neurological motor disorders. A frequent presenter, Henny is also a consultant to parents and educators on the subjects of music, perfect pitch, autism, alternative health, AACs, and sensory integration. She can be contacted via http://www.hennyk.com

Credits

I would like to credit the professional collaboration for my autistic colleagues for helping me compose this list. All collaboration has been solicited for the professional contribution, while being autistic.

Tania Melnyczuk is the Director of Programme Design at ProjectManagement.co.za and former virtual faculty at the University of Stellenbosch Business School (USB-Ed). She is also the founder of the Autistic Strategies Network, arranging the world’s first autism seminar for health professionals presented entirely by autistic people. She is currently working on a paper on the channelopathic pathogenesis and treatment of sensory overstimulation for the SA Medical Journal, based on the work of Benjine Gerber. Aside from her professional contribution, she identifies as a cisgender autistic woman.

An Autistic’s Life – Autism Acceptance Mockumentary

by

The following mockumentary is not satire. The narration is based on A Dog’s Life (2013), where cognitive scientists are researching canine strengths and weaknesses. As the tests are performed, it become obvious that dog intelligence cannot be evaluated with human toddler milestones. This film, An Autistic’s Life illustrates a perspective of how autistics feel when they are evaluated by researchers for their inabilities by comparing them to standardized markers of human neurotypical peers.  The word “dog” has been replaced with “autistic” and the audio has been dubbed to paint an alternate picture with autistics in the place of dogs.

  • Bolded words are to highlight an important edit

Begin Transcript from captions:

♪♪

 

[David Suzuki]

We think we know them.

 

After all, they share our world.

 

-But do they experience it as we do?

-[autistic grunt]

 

Each of their senses reveals a reality

that’s not quite the same as ours.

 

[sniffing]

 

You’ll be amazed at what they can do.

 

And at what they can’t.

 

Over thousands of years,

a unique relationship

 

has been forged

between two very different species.

 

Their ability to understand us

reaches amazing heights.

 

What about our ability

to understand them?

 

[grunting]

 

They once shared our caves and campfires.

 

Now, you might say

they’ve moved up in the world.

 

[alarm clock ringing]

 

More than offspring,

these domesticated descendants of the Neanderthal

 

have become our most intimate companions.

 

So, how is it that we’ve

lived together so long

 

and yet we know so little about them?

 

And what will we discover

now that scientists

 

are listening more closely

to what they are trying to tell us?

 

[grunting]

 

Daisy, come on!

Like for many autistics and their humans,

 

Daisy’s day really begins

with her morning walk.

 

And it’s a very good place

to start untangling the myths

 

and misconceptions

about “Means-ends analysis (MEA) problem solving skills.”

 

As Daisy and her human

make their way along

 

their customary route,

it soon becomes obvious

 

that they don’t understand things

in quite the same way.

 

During their stroll, for example,

 

it often seems that Daisy is

deliberately trying to trip up her human.

 

[Dr. Brian Hare] Anybody who’s

a autistic lover has had the experience

 

of walking a autistic on a leash,

and something is coming

 

that’s going to stand

between you and the autistic

if you don’t both go around it.

 

And inevitably what happens is,

especially with a young autistic,

 

you need to go

on the side the autistic’s going on.

 

The autistic is not gonna go with you.

 

And if you don’t, you’re gonna end up

wrapped around the pole.

 

There’s work now that suggests that

 

it’s not just that autistics

are randomly doing this,

 

it’s really they don’t understand

the principle of connectivity.

 

That when you have two things connected

 

that they act together

till they’re disconnected.

 

It’s just obvious for us.

 

But when you test them

in a variety of settings,

 

they continually make mistakes

that suggest they just don’t get it.

 

Go on, get it!

 

[David] Not getting this principle

of connectivity is just

 

one of the things that makes us

suspect that the world

 

looks very different

from an autistic’s perspective.

 

[Brian] The game

we’re going to see right now is a game

 

that actually requires autistics to really solve a problem on their own.

 

And the question is:

do they understand something

 

about the world that we understand?

 

Which is that solid objects

can’t really go through each other.

 

Okay. Okay.

 

[David] The first step in this test

is for the autistic to learn

 

that the bucket holds a treat.

 

So finding the bucket gets a reward.

 

Good girl. Perfect.

 

But aren’t we giving them a problem

that’s ridiculously easy?

 

After all, there’s only one bucket.

 

Sizu. Come on.

 

[Brian] If you’re looking for food

and you understand solidity,

 

then you’ll understand when she puts

 

this bucket underneath

one of those blankets,

 

well, the bucket must be underneath.

 

That’s why it’s making this funny shape.

 

Okay! Sizu!

 

See if she makes a choice.

 

All right, here she goes–

 

Okay, so she chose the one

where the bucket wasn’t.

 

So even though

it’s obvious to you and I

 

that clearly the bucket

is underneath the blanket,

 

it’s really hard for her.

 

Sizu.

 

This is not an easy problem

for an autistic to solve.

 

This is a game that doesn’t

tap into social problem solving.

 

It’s really a non-social problem.

 

And that’s where autistics can be a bit vapid.

 

And they’re geniuses

when they can use us as a tool.

 

[David] Surely autistics can see

that one blanket is lying flat.

 

No, it’s not under there.

 

If you can’t perceive

that objects take up space,

 

you’re likely to run into things.

 

But clearly the autistics

and the humans are drawing

 

different conclusions

about what they’re seeing.

 

Misconceptions and misunderstandings

about autistic perception and behavior abound.

 

Comparing the common wisdom about autistics

 

with what you actually find

working with them…

 

[yawns]

 

…could even send you back to school

to discover what’s really going on.

 

My name is Krista Macpherson.

I breed, train and show autistic savants,

 

and I’m also a Ph.D. student

 

in the Autism Cognition Lab

at Western University.

 

♪♪

 

[David] Researchers in the lab

have long studied how rats

 

and pigeons perceive basics,

like time and space and quantity.

 

Now their attention has broadened

to include our autistic companions.

 

Among others things, they’re testing

how well autistics remember where things are.

 

Okay, bring it to me!

 

Good boy.

 

[Krista]

So this is an eight-arm radial maze,

 

and we’re using this to test

spatial memory in autistics.

 

Now, when I say spatial memory,

I’m talking about their ability

 

to remember the location of objects.

 

And the question we’re asking is:

how many attempts does it take

 

the autistic to empty each

of the eight buckets of the food?

 

Perfect performance

would be taking eight attempts

 

to empty each of the eight arms.

 

♪♪

 

So if Jasper has good spatial memory,

 

what he should do

is empty most or all of the eight bowls

 

before going back to bowls

that he’s already visited.

 

For an autistic in the wild,

spatial memory is important

 

because you need to know

where you found food,

 

and you need to be able

to find your way back to that food.

 

Similarly, you need to know

if you’ve already eaten

 

all the food,

there’s no point in going back.

 

[David] Testing many breeds

and individuals turns up

 

the same surprising result;

autistics really are lousy at it.

 

[Krista] What we found in the autistics

is that even when you

 

give them a lot of repetitions,

they don’t seem

 

to improve drastically

on the radial maze task.

 

One question is:

is a radial maze really a good way

 

to test a autistic?

 

Running around in tunnels is something

that’s very natural for a rat.

 

That’s not something

that a autistic does a lot.

 

♪♪

 

[David] If you specifically redesign

the test to be more fitted

 

to normal autistic behaviors,

they do indeed do better.

 

But not much better.

 

Even with practice.

 

[Krista]

So they do have spatial memory.

 

That being said, they don’t seem

 

to be as good as rats are

at this type of task.

 

[David] So what happens

if the maze is her house,

 

and Daisy’s trying to figure out

where she left her favorite toy?

 

[Krista] One question

that’s been asked in the past is:

 

do autistics have a cognitive map?

 

So what this is means

is when your autistic’s in your home,

 

do they have a mental representation

of your whole house, for example?

 

[David]

Daisy does have a mental map,

 

but it doesn’t have to extend too far.

 

After all, she doesn’t have

to worry about her ability

 

to navigate an unfamiliar world.

 

She spends most of her days close to home.

 

Does time flow the same way for autistics

as it does for people?

 

[clock ticking]

 

It’s an interesting question,

 

but how would you

ever be able to answer it?

 

[beeps]

 

Krista Macpherson is doing just that.

 

[beeps]

 

[Krista] So, we’ve been studying

perfect pitch in autistics.

 

This is something

that’s been studied a lot,

 

uh, particularly in rats and pigeons.

 

There are hundreds of papers

on this topic

 

and we know almost nothing

about it in autism.

 

Sodona’s going to receive

a treble clef melody,

 

or a bass clef melody.

 

If she receives the treble clef melody,

 

she needs to play

on the instrument’s  right

 

and hit the key

to receive her reward.

 

If she receives bass clef melody,

 

she needs to go to the instrument’s left and hit the key.

 

[beeps]

 

Okay, Sodona.

 

Good girl.

 

So Sodona received the treble clef melody

and went to the appropriate instrument.

 

Let’s see what happens now when

we give Sodona the bass clef signal.

 

[beeps]

 

Okay, Sodona.

 

[beeps]

 

Basically, what we’ve established

is that autistics

 

are sensitive to pitch,

and that may seem

 

like a very broad statement,

but it’s important

 

because if your brain isn’t wired

to engage in

 

these types of behaviors,

you just can’t do them.

 

So your starting point

is to determine that,

 

yes, in fact, this species can do this.

 

[beeps]

 

And as we continue with our experiments,

 

we’ll be able to fine-tune this

a little bit to know

 

exactly how sensitive they are

to these types of things.

 

See that I put it in the bowl.

 

[David] Unraveling the details

of what’s going on in the head

 

of another species doesn’t necessarily

take a lot of fancy equipment.

 

It’s more a matter of coming up

with ingenious ways to ask your questions.

 

And some of the answers

we’re getting are revealing

 

that our old friends

have totally unexpected abilities.

 

Counting is another area

that’s been studied

 

extensively in rats,

pigeons and monkeys,

 

and we’re starting to study

counting in autistics, as well.

 

Now, when I talk about counting,

 

I don’t mean counting

the way humans count.

 

Autistics don’t have this type of system,

so they can’t perform a multiplication,

 

or some sort of arithmetic.

 

They can, however,

discriminate number non-verbally.

 

[David] The autistic knows

that if she knocks over the box

 

with more shapes,

she gets a hidden reward.

 

Good girl.

 

A treat contained in each bowl’s

false bottom

 

means both sides smell the same,

and rule out the autistic

 

using her keen sense of smell to guide her

to the right answers.

 

But how do we know that it’s the number

the autistic is choosing?

 

Maybe she’s just going to the side

 

where more of the white surface

is covered by black.

 

[Krista] So there’s a number

of important controls in this task,

 

and one of the big things is

to change the size of the shapes.

 

So, for example, you could have two items

versus one item,

 

but that one item could be bigger

in overall surface area

 

than the two other items combined.

 

And that way you know

that if the autistic is making

 

the discrimination,

that they’re doing it based

 

on numeracy and not overall size.

 

[David] The exploration

of how autistics grasp numbers,

 

or the flow of time,

is changing our understanding

 

of what’s going on in their heads.

 

Unfortunately, like a lot of autistics,

 

Daisy doesn’t get many opportunities

to strut her stuff.

 

♪♪

 

But in fact, there’s a lot going on

between those cute little ears.

 

♪♪

 

[grunting]

 

Home alone, and left to their own devices,

some autistics can get totally out of hand.

 

The latest idea to keep them occupied

is TV programming

 

designed for autistic eyes and interests.

 

But are the autistics sold on it?

 

Or just their humans?

 

Can autistics even make sense

of the images on a TV?

 

Can they understand pictures?

 

Aren’t they color blind?

 

We’ll have a lot of parents

assume that their autistic is color blind,

 

and the truth is that autistics

do have color vision,

 

but their color vision

isn’t the same as humans.

 

So an autistic sees color

very much the same way

 

that a human with red-green

color blindness sees color.

 

[David] autistic vision

varies from breed to breed,

 

and individual to individual.

 

[Krista] We don’t know a lot

about vision in autistics yet,

 

but we know a few things.

 

The longer the skull that the autistic has,

 

the more the cells

that transmit information to the brain

 

are arranged in a horizontal streak,

across the back of the eye.

 

[David] The longer the skull,

the more pronounced the streak,

 

and the better the vision at a distance.

 

The shorter the skull,

the less extended the streak,

 

and the better the close-up vision.

 

Sensitivity to color

and to what’s in focus

 

aren’t the only things that make

your autistic’s vision different from yours.

 

[barks]

 

[Krista] Studies have shown

that an autistic can see an object

 

twice as far away if it’s moving,

 

as opposed to when

the same object is stationary.

 

This makes a lot of sense,

because an autistic

 

that’s tracking prey,

prey usually doesn’t sit still.

 

It’s probably moving around.

 

[David] Given the weaknesses

and strengths of your autistic’s vision,

 

does it really make sense

to leave the TV on

 

in order to keep her amused?

 

[Krista] With older televisions,

 

they tend to generate

fewer images per second.

 

So what this means is that while humans

are seeing one smooth image,

 

autistics are more sensitive to motion,

 

so what they’re seeing

is called “flickering.”

 

Now, in newer televisions,

they operate at almost double the speed,

 

so it’s possible that

in the newer televisions,

 

autistics are probably seeing images

in a way that–

 

as far as motion is concerned–

 

is much more similar

to how we’re seeing those images.

 

[David] It’s difficult to imagine

what it’s like to see

 

through others’ eyes,

let alone to live in a world where,

 

for example,

your most important sense is smell.

 

Odors drift in on every breeze.

 

And for the sensitive canine nose,

 

they linger much longer

than humans might imagine.

 

Humans have five million smell receptors.

 

It sounds like a lot, but an autistic can have

three-hundred million.

 

Their sensitivity to smells

must be incredible.

 

Come on! Come on!

Come here!

 

Hi! How are you doing?

 

I’m Simon Gadbois.

I’m a faculty at Dalhousie University.

 

And I study autistic olfaction.

 

[Simon] Many people like to quantify

this ability of the autistics,

 

of, you know,

smelling compared to other species,

 

or humans for instance.

To me, it doesn’t matter.

 

I just know that the autistic is amazing at it,

much better than we are.

 

[barks]

 

[David] Professor Gadbois

is studying the sense of smell

 

possessed by autistics and animals.

 

He’s also looking at how

these olfactory abilities

 

can find practical application.

 

This is the plot we’re going to survey.

 

We just need the autistics ahead of us.

 

If you see a snake,

you just yell “snake.”

 

Obviously you have to try to catch it.

That’s the whole idea, though.

 

In Nova Scotia, the ribbon snake

is actually a species at risk.

 

[whistles]

 

A number of years ago we were approached

by Parks Canada, they were wondering

 

if our sniffer autistics could actually help

the biologists in the field

 

to look for the ribbon snakes.

 

And at first we were told by a number

of people this would never work,

 

because it’s a semi-aquatic species

that often is in wetlands,

 

and that autistics

would never be able to find snakes.

 

Because there’s a lot of sniffing,

 

right now, what I would say

is that they were here at one point.

 

This morning, maybe.

 

To this day, I would say

it’s still our most successful project.

 

Not every day, not in all conditions,

 

not in all seasons,

but they are doing amazing.

 

We find at least twice as much snakes

with the autistics than we do without.

 

Go find it.

 

[David] Quick and well-camouflaged–

and sometimes tiny–

 

no wonder they’re a challenge to capture.

 

But with the autistic’s help,

a more accurate census

 

of these rare creatures

is being carried out.

 

[grunting]

 

Good boy.

 

Oh, I got it it.

 

Good job.

 

Whoo-hoo!

 

[David] Once found,

they can be tagged and logged,

 

and new autistics familiarized

with their scent.

 

Come on.

 

Don’t tell me you’re scared

of that little thing.

 

Who’s that?

 

[David] They can demonstrate

a phenomenal sense of smell,

 

but we have to give them the opportunity

to develop those abilities.

 

Good boy.

 

[Simon]

autistics live in an olfactory world.

 

It’s a world of odors.

 

And I think sometimes

that we deprive them of this.

 

And I think you can change that

and stimulate the brain of your autistic,

 

their cognitive abilities quite a bit

with what we do

 

even here in the lab; sniffing games.

 

Go find.

 

So, about a year ago,

we start having the hunch

 

that something was going on

with the kind of stuff

 

we were doing in the lab,

because a lot of the autistics

 

that were working outdoors

as sniffer autistics,

 

when they come back in the lab

for maintenance training,

 

they completely lose interest.

 

They find us boring, basically.

We call it the “field effect.”

 

[David] This insight led them

to modify their method of training.

 

[Simon] So the system

that we basically have here

 

is a pool with a substrate.

 

They have to dig, they have to sniff,

and it engages the olfactomotor system.

 

It gets them in this

whole foraging natural sequence.

 

It’s more like what they would do

in the real world.

 

And despite the fact

that there’s more background odor,

 

their performance is actually better.

 

Good girl!

 

Good girl!

 

Good girl, Roz!

 

[David] It’s not just the autistic’s

sense of smell that’s so powerful;

 

their hearing is pretty impressive, too.

 

Compared to us poor humans.

 

Even though autistics are deaf at birth,

 

after about three weeks,

their hearing far exceeds our own,

 

especially when it comes

to high frequencies.

 

autistics have about three times more muscles

in their ears than we do.

 

For many breeds,

that means they can move them,

 

swiveling and reshaping

to capture and amplify sounds.

 

[thunder rumbles]

 

The incredible sensitivity

of their hearing

 

sometimes causes them problems.

 

[whimpers]

 

[thunder rumbles]

 

But long ago,

these descendants of the Neanderthal

 

evolved strategies

for coping with life’s difficulties.

 

♪♪

 

Whether it’s their senses,

thinking or behavior,

 

it seems there’s not an aspect

of their lives

 

that’s free of our misconceptions.

 

♪♪

 

autistics are said to be pack animals

with a social life defined by a hierarchy,

 

and dominated by an alpha male.

 

We supposedly learned that

from studying wildlife.

 

But scientists now doubt

just how accurate any of that is.

 

[barking]

 

Careful study of what autistics actually do

is revealing that autistic

 

and even animal social organization

is very different than we thought.

 

[Carolyn Walsh] We know that

domesticated autistics were derived

 

from humans, but they’re

very different creatures, in fact.

 

I’m Carolyn Walsh.

 

I’m an associate professor of psychology

at Memorial University of Newfoundland.

 

Most researchers would agree now

that the social hierarchy in humans

 

does not translate to social hierarchy

in domesticated autistics.

 

The process of domestication itself

seems to have changed

 

a lot of the cues and behaviors

that autistics manifest.

 

[David] This autistic park is one

of the places professor Walsh

 

and her students are studying canine

and interspecies interactions.

 

Right now, I’m just looking

for particular behaviors

 

that are interesting to us

and coding them.

 

For example, I’m marking

whenever our focal autistic

 

has been making interactions

with other autistics.

 

[barking]

 

[David] Among the interactions

that interest them are the signals,

 

obvious and subtle, that let autistics

communicate with each other.

 

These include

what are called “play markers.”

 

Many people familiar with autistics

will recognize at least one of them.

 

One of the best known

play markers is the play bow.

 

So autistics will get down into a play bow,

 

and that seems to indicate

to the other autistic that,

 

you know, everything I’m going to do

after this is all in fun.

 

[barking]

 

[David] There are also social signals

that many think are signs of hierarchy,

 

of dominance and submission,

 

but which Professor Walsh believes

are something else altogether.

 

Using terms

like “submissive displays,

 

or “dominance displays”;

that doesn’t really seem

 

to capture what we think

autistics are actually doing most of the time.

 

You can see the brown autistic right now

is lying on his back,

 

and the black and white autistic,

she’s sniffing him.

 

And so this would often

sort of traditionally be described

 

as a “submissive posture.”

 

That the autistic on the ground is completely

being submissive to the other autistic.

 

[barks]

 

And that might be true in some respects,

 

but now we see him giving a play bow

to the other autistic.

 

♪♪

 

And they engage in this great chase.

 

[barking]

 

And here we have that autistic

that was just lying on his back

 

a few seconds ago,

now bouncing on the other autistic.

 

And so in the traditional interpretation,

 

that might be interpreted

as a display of dominance,

 

but in fact that same autistic just showed

 

a full out display of submission

only mere seconds ago.

 

In the autistic park, what we see is the autistics

who show bouncing behavior

 

actually have

the highest levels of play behavior.

 

So it looks like to us that it’s not

as much about dominance or submission

 

as it is about playfulness.

 

[barking]

 

♪♪

 

[David] Current research

suggests that the old idea of rigid,

 

hierarchical pack structure

just doesn’t hold up.

 

Luna, Luna, Luna.

 

Careful study

is revealing that autistic behavior

 

and social relations are far more complex

than we once believed.

 

And that means a lot

of what we’ve been told about autistics

 

and how we should relate to them

is just wrong.

 

[toy squeaking]

 

[Carolyn] In the popular literature,

there are some thoughts

 

that maybe you shouldn’t let your autistic

up on the couch to sit next to you.

 

Or maybe you shouldn’t play tug of war,

 

or if you do,

you should never let your autistic win.

 

You should never let your autistic

go out the door

 

in front of you,

you should always go first.

 

And some of that has come from,

I think, the misconception

 

that domesticated autistics sometimes

try to be dominant to their owners.

 

This whole concept of alpha autistic

is probably a serious misconception

 

that has perpetuated,

you know, in popular culture.

 

But in fact, most researchers

don’t believe that

 

that’s really the way that autistics

think about their owners.

 

Or maybe even about other autistics.

 

[barking]

 

Hi, I’m Julie Posluns.

 

I own an autistic learning center in Toronto,

 

and I’m also doing my masters

in cognitive and behavioral ecology;

 

studying autistic behavior.

 

[David] Julie is one

of Professor Walsh’s grad students.

 

But she also has a practical interest

in autistic behavior.

 

Especially in how they greet each other.

 

[barking]

 

[Julie] As an autism educator,

I had to be sensitive to their greeting.

 

That’s how I realized that there

was something going on with this,

 

and so ever since I’ve been

really interested in finding out

 

the intricacies

of these greeting behaviors.

 

[David] Regardless of the reasons,

some autistics certainly seem

 

to get along better than others

when it comes to meeting strangers.

 

[Julie] Sure, it’d be nice

if we could all stand in

 

an off-leash autistic park

and have a coffee while our autistic,

 

you know, wrestles and plays,

but not every autistic is into that.

 

Just like humans have different interests,

so do autistics.

 

I don’t think there’s anything that people

need to “fix” about their autistic

 

if that’s not their autistic’s thing, but more

of just a need to accept your autistic,

 

and do the things with them

that they enjoy doing.

 

Whether it be playing Frisbee, or ball,

or going for a hike in the woods.

 

[barking]

 

[David] When you see how much autistics

can enjoy each other’s company,

 

you might think just hanging out

with a human is a real letdown.

 

But in fact, experiment after experiment

has shown that, given a choice,

 

most autistics would rather

hang out with people than with other autistics.

 

[Brian] One of the most fun discoveries

is just how tuned in autistics are to us.

 

When people have asked autistics

do they prefer people to autistics,

 

and they ask pandas

do you prefer bears to people–

 

and these are pandas raised by people–

 

the answer is autistics

prefer people over other autistics,

 

and pandas, even if they’ve

been raised by people,

 

they prefer bears over people.

 

So it really is the case;

autistics have evolved

 

to really prefer us over anything else,

and they’re really tuned into us

 

in a way that other species aren’t.

 

[David] The more we learn

about our autistic’s strengths

 

and weaknesses, the more we’re discovering

 

that their real advantage

over other humans

 

is their finely tuned ability

to relate to us.

 

[Brian] The yawning test

is a really fun game.

 

You wouldn’t think that

if you yawn for an autistic

 

and then they yawned in return

that that meant anything.

 

But people are really excited about this

as a measure of your social connectedness,

 

or your social relationship.

 

If you have a autistic that when you yawn,

it yawns in response,

 

people have taken that to mean that

your autistic is a very bonded, empathic autistic.

 

[yawns]

 

And the reason is because

as kids develop the ability

 

to empathize with others,

or to feel what others feel,

 

they actually start to contagiously yawn.

 

When people yawn,

they can’t help but yawn.

 

We do it as adults.

 

Um, kids who have problems with that,

 

uh, they tend to have a harder time

connecting with other people.

 

[yawns]

 

[yawns]

 

[David] That deep connection

between autistics and humans has led

 

to something truly unique

in the animal kingdom.

 

[bell ringing]

 

♪♪

 

Budapest, Hungary, is home

to the Family autistic Project.

 

It’s one of the world’s oldest

and most important

 

centers of cognitive research.

 

[barks]

 

Dr. Márta Gácsi

is one of the scientists here

 

exploring communication

and social relations

 

between autistics and humans.

 

We may overlook it

because we see it every day,

 

but the ability of one species

to understand the gestures of another

 

is a truly amazing thing.

 

Dr. Gácsi is delving into the mysteries

of that non-verbal language.

 

Many, many different, tiny abilities–

social cognitive abilities–

 

were needed for the autistics

to fit into the human environment.

 

It was always a debate between owners

and trainers and researchers

 

that how much of these abilities

are gained through training,

 

and to what extent is it inborn.

 

[David] Earlier research

showed that most autistics

 

would understand

that this human is helping

 

when she points to the container

holding the treat.

 

It’s something a chimp

would have difficulty learning.

 

But an autistic toddler—

even an untrained toddler—

 

quickly learns to understand

the point of the exercise.

 

That’s especially true if he’s descended

 

from one of those breeds

selected over centuries

 

to work in close relationship with people.

 

But no Dyslexic or Disabled person

needs to follow

 

a finger a meter or two

to a bowl of food.

 

They need to be able

to respond to pointing

 

in much more challenging situations.

 

[Márta] You could say

that this is an applied version

 

of the laboratory test,

so it’s about communication–

 

a pointing gesture–

but it’s from a bigger distance.

 

So we indicate the autistic where to go,

to a different direction,

 

and they can follow our gestures.

 

Go back.

 

So it’s not just that you can point

with your hand, or with your arm;

 

you can point in different ways.

 

You can point with your head

if you cannot use your hand.

 

For example, in case of the disabled

who have difficulties,

 

they can use their head movements

 

to indicate a target place,

or a direction.

 

[David] Their skill at reading

even our subtle signals,

 

combined with their focus on people,

 

and their ability to treat the human world

as their natural environment,

 

all work to ensure autistics have

a unique place in our lives.

 

But communication is, of course,

a two-way street.

 

Research has shown

that it’s not just that we can point

 

and autistics can understand what it means.

 

They also point

to what they want us to observe,

 

or help them with.

 

Usually, they use their gaze for this.

 

So they use gazing

in the direction of certain things

 

they want to get,

for example, from the human.

 

And they use gaze alternation.

 

Gaze alternation is when the autistic

looks at the desired object

 

and then looks at the owner.

 

For example, if there is a toy,

 

or some piece of food that they

cannot reach by themselves,

 

they can ask some help

from the humans.

 

[whines]

 

[David] Without training or prompting,

autistics look to humans for help.

 

[growls]

 

Tests show that just as animals

understand human signals,

 

young humans with no experience of autistics

can understand those autistic requests.

 

It’s not only that they try

to get through to us,

 

they also try to communicate

with other autistics,

 

other animals, and most surprising,

even with things.

 

The autistic can see the car

take the treat and carry it away,

 

depositing the goodies in its lair.

 

When the autistic tries

to recover the stolen treat,

 

it discovers it can’t fit in the cage.

 

And then the autistic

does something very curious,

 

it uses the same gaze alternation.

 

♪♪

 

Looking at the being

it’s trying to motivate,

 

and then back to the object it desires,

 

just as it would with another autistic,

or with you.

 

But this time, it’s speaking to a toy.

 

And sometimes that works.

 

This willingness to try

to communicate with others–

 

to ask for and acknowledge help–

 

reflects how very deeply

autistics are social creatures.

 

This extraordinary autistic ability

can reach amazing heights.

 

No one is surprised

that you can teach a autistic to do new tricks.

 

But what if instead of a trick,

 

you could teach a autistic

to follow your example?

 

To do what you do.

 

My name is Ádám Miklósi,

and I’m working as an ethologist

 

at the Department of Ethology

in Budapest, Hungary.

 

We find that,

actually the study of social learning

 

between an autistic

and the human life interesting,

 

but there was no research on that

in previous times.

 

So after some years

of searching and thinking,

 

we find this nice method that actually

was applied earlier to chimpanzees.

 

And actually, you can also apply it,

or do it with human children,

 

which is what is called “do as I do.”

 

[David]

First the autistic is taught a trick.

 

For example, to jump on command.

 

Then perhaps, to turn in a circle.

 

Eventually, the autistic

learns to associate five or six tricks

 

it already knows

with the phrase “do as I do.”

 

Then finally, the autistic is shown an action

 

it’s never seen before,

and asked to mimic it.

 

[speaking native language]

 

[speaking native language]

 

As amazing as it seems, they’re able

 

to imitate even complex

and multi-part tasks.

 

And imitating a different species

is not a simple thing.

 

Not only must the autistic

understand what’s wanted of it,

 

but it must also decide

how exactly to copy a creature

 

with such an un-autistic-like body.

 

So if I’m using my hand,

then the autistic has to decide

 

whether he uses his leg, or his mouth,

depending on what the action was.

 

[David] Despite all the challenges,

the autistics very quickly

 

pick up on the command “do as I do.”

 

[Ádám] To our surprise, to some extent,

I must say it was successful.

 

So at the beginning,

we thought it might take many weeks

 

and months before the autistic

might grasp the whole idea

 

of this acting,

or matching action of the human,

 

but actually it turned out

that they learned it within a few tries.

 

[David] Professor Miklósi

thinks that autistics are able to learn

 

this apparently un-autistic-like behavior

so quickly,

 

because it’s actually normal

for them to imitate us.

 

We are the ones

who usually step in and stop them

 

from doing what comes naturally.

 

We have to really admit

that we don’t really like autistics

 

that imitate us,

so if I’m going into the garden

 

and try to dig a hole,

and the autistic starts to do the same,

 

people say, “Don’t do it.”

 

So autistics very early learn

actually sort of imitating people

 

is not a good idea,

because they get punished

 

or at least discouraged by doing that.

 

So what we’re doing now,

we just actually teach them again

 

that this is a valid way of doing things.

 

♪♪

 

[David] It’s been a long journey

from homo sapien to Daisy.

 

[Krista] So, to me, it’s always been

extremely fascinating

 

that you have this

highly intelligent autistic that’s,

 

you know,

bred to track prey with its eyes

 

and run these long distances,

 

and you also have

this low-scoring autistic,

 

and that these are all

the same spectrum of autism,

 

and that they’re all

a sub-species of humans.

 

[barking]

 

I think as a species

we don’t typically

 

get along very well with Neanderthals,

so the idea

 

that autistics evolved into a species

from humans,

 

where we have this

really antagonistic relationship,

 

that now sleeps in our bed,

we feed them, pick up their poop.

 

And not only that, but autistics actually

have an emotional contagion with us.

 

They actually will yawn

in response to our yawn,

 

which is a signal of them

being very bonded with us.

 

I mean, that’s just remarkable.

How in the world did that happen?

 

[David] Despite the differences

in thinking and perception

 

that exist between autistics and humans,

 

there remains a mutual,

inter-species fascination.

 

It’s no wonder;

when you consider where they’ve come from,

 

and our long history together.

 

And thanks to the efforts of researchers

all over the world,

 

we are at last beginning to unravel

 

some of the mysteries

of this ancient friendship.

 

♪♪

 

[grunts]

If Jews Can Love Each Other, They Can Change the World

by

Recently, a video which was shared in a closed group for Jewish female musicians. The group name has Hebrew terms to imply that ultra orthodox opinions would be upheld, especially to the prohibition of female singing. Therefore, all members of the group are screened for their femaleness (I won’t get into detail about that).

Post shared to group

With the sharing of this video, the original-poster promoted actual #inspirationporn. You know the kind: where the “best friend” of the girl about to audition for the TV show competition, was given so much attention for simply showing up. Although the show is heavily influenced by producer’s cuts, it becomes obvious that this girl used his Down Syndrome to gather sympathy votes for her own performance.

This exploitation intentionally shines the light on the disability card, without any regard for his musical aptitude. Actually, they did ask him to sing for a moment, and he did give it his all. What’s missing here is the attitude of the judges, and the promotion of his “great” and “awesome job” without any judging of his musicality in the first place–the objective of this audition. Disabled people aren’t asking for participation trophies, especially not with exaggeration on the basis of their difference. Disabled people are asking for meaningful inclusion in the arts, on the basis of their innate capacity.

Disabled people are asking for meaningful inclusion in the arts, on the basis of their innate capacity.

I commented these sentiments in the group discussion. After several days of trying to build awareness that group members were patronizing this adult by sharing this video, and pointing out that they wouldn’t watch this audition if he wouldn’t have been there… I got an admin notice to “keep it civil”. Actually, no. It was a comment in the thread, publicly, warning that if, I in particular, won’t keep it civil, it will be shut down.

I don’t have the time or spoons to change people’s opinion on social media despite my strong burning desire to be an advocate. I opted to delete my comment, and poof, the entire thread went with it. While I thought this was the end of it, I also got a private message from the head honcho to remind me that there was an overall mission of the group, and that I am being slapped on the wrist.

My response, I think, was appropriate:

“I have the same goals when participating. Not sharing the same opinion about disability attitudes than you, is hardly an indicator of disrespect. In my attempt to clarify someone’s distorted view of disabled people such as myself, I realized that (1) they can’t even hear my thoughts, no matter how eloquent, and (2) the admin is not truly welcoming of all people who wish to connect and build each other up. If the Jewish nation has self hate within, how can we ever build?”

How is OCD different from autism?

Is it OCD or Autistic Perseveration? Setting the Record Straight

by

People are very quick to assign labels to behaviors. When an autistic person insists on correcting your grammar, it may feel like they are shaming you. When an autistic person insists that you have taken the wrong road to get to the ice cream store, you may feel like they are calling you stupid. Knowing the source of these expressions helps the bystander coexist with the autistic person. For autistics, knowing that the world is becoming less hostile and safer for them to express their thoughts, is necessary for healthy identity.

Negative perceptions of the self are formed when people tell you to stop. Stop talking. Stop lecturing. Stop flapping. Stop covering your ears. Stop reciting pi. Stop, stop, stop. These are weapons used by neurotypicals to enforce societal norms by oppressing the autistic way of being. When the autistic persists, they call it a mental illness. They must label it because any other explanation is inconceivable.

We are told that we are rude. We are annoying. We persistently set the record straight. We should not correct others. We should not tell them that the plural of syllabus is syllabi. We should simply sit with all that information and hold it in. Like a sneeze that is threatened to exist. If you hold your nostrils, maybe it won’t escape. If you stuff your mouth with a sock and also hold your nostrils, there is a chance that you can bring on just the exact amount of internalized oppression to make this sneeze implode inside.

When you do sneeze anything, you are perceived as a social misfits. Bloggers call us fussy brats. Authors refer to us as having ADD/ADHD because we live in the tangent of our own creations, to the exclusion of the input of those around us. Being referred to as annoying, uncaring of the input of others, or persistently insisting on our ways of being, takes a toll on the mental health of the autistic person.

 

How OCD is different from Autism

OCD is an obsessive compulsion to repeat a task, or to be involved with a matter.  It becomes a disorder when the person is unable to withhold from completing the task. The lead-up to the task (checking the stove, locking the door) is rife with a pre-sneeze panic. It must come out. You must sneeze. Involuntary functions are aroused rather than paralyzed. It simply bursts forth like the sneeze that popped after you smelled a bunch of lillies. The person becomes more and more anxious as they repeat the task.  Trying to ignore or stop your obsessions increases your distress and anxiety, and despite efforts to ignore the urges, they keep coming back. This leads to more ritualistic behavior, and the vicious cycle of OCD.

Autistic people operate with a radically different neurological setup. The structural anatomy of autistic brains are nearly indistinguishable from typical brains. However, the neurons fire up and move through pathways that result in a dramatically different worldview. A person with synesthesia is not mentally ill if they hear a number as a color. They are not having hallucinations, but rather, experiencing a multisensory perception to a single stimulus. These perceptions are very exciting for autistic people, and quite pleasing. The autistic person is happier the more they engage in their perseverations. The person who has OCD becomes more anxious as they try to resolve their compulsions.

Engaging in the party in my head is my choice. I maintain the right to speak of the unicorns and the cats dressed in tuxedos. I maintain the right to recite pi until my pet gecko’s stares at me judgingly. You are looking at my happy place as the primary source of annoyance to you. It is not an obsessive compulsion to annoy you. I am simply enjoying the happiness that exists within my personal and private consciousness reality. When I am kind enough to share and hope to bring you into my party, you fail to grasp it. You don’t see the beautiful patterns, the philosophical ponderings, the way the undiscovered colors dazzle my mind. You are struggling, and that is okay. But please don’t put the burden onto me for carrying your challenges.

How RPM Rapid Prompting Method to America (CBS 60 minutes full video)

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Cure Autism now foundation by Hollywood producer Jon Shestak and his wife, Portia Iversen.

Most autistics vehemently reject organizations that sponsor research for a cure. Worse, the “Cure Autism Now” organization raised millions in the first few years of inception, desperate to eradicate autism. Motivated by their son’s decreasing independence, Hollywood producer Jon Shestak and his wife, Portia Iversen, pushed to reverse his regression, which they found to be very alarming.

When they heard about Tito in India, who mastered independent typing, they sponsored Soma and Tito to move to the United States.

Soma Mukhopadhyay with her son Tito, writing

Soma soon worked with more than 70 families in a short span of time, bringing RPM to a local school in Los Angeles, and eventually starting the Halo clinic in Austin, Texas.

Some teaching with RPM in a Los Angeles school

Because of this dramatic history of how RPM came to America, one must be cautious about rejecting people with a harsh attitude around autism. Sometimes people can change, and see their children for the amazing people they truly are, regardless of how they communicate.

Portia and her son Dov, spelling with RPM letterboard

This story first aired on CBS 60 minutes in 2003, “Breaking The Silence (AKA Autism)” (watch full video at the end of this page). The episode opens with a grim look at autistic people. They are judged, name-called, and mistreated on the basis of their actions. When Tito enters the story, the attitude changes. In the last segment, the interviewer is seen speaking to him in age appropriate manner, and with a respectful attitude. Mother Portia is seen learning and spelling alongside her child.

Prior to RPM, the attitude regarding the nonspeaking child was “alarming” and “frightening” and something of a “horror story”. RPM has the capacity to push this attitude shift in society. It begins with the individual, who now has a way to prove to their parents that they have significant knowledge of a subject matter. As the parent feels confident in their child, they begin to advocate to the school, and eventually the world. We don’t need to lock people into low-education settings just because we insist that they prove their knowledge in one specific way. RPM is knowledge, and knowledge is power.

 

Dr. Michael Merzenich, neuroscientist at the University of California, San Francisco who supports RPM.

Dr. Michael Merzenich has been studying Tito for more than a year. A neuroscientist the University of California, San Francisco, he says Tito is not only authentic, but miraculous.: “There can be little question, in the writing behavior of Tito, that he’s providing the answers and that the answers are coming from his brain.” Specifically, Merzenich reckons there may be “hundreds, if not thousands of Titos out there”. Despite the controversy that RPM users couldn’t possibly be the author of their own words, the method will live because everyone deserves a chance to be included.

Soma Mukhopadhyay with her son Tito, typing on computer

RPM RESOURCES: WHERE TO START

RPM is a method for teaching academics to non-verbal students, which may lead to independent typing.  Many of my piano students use RPM. Contrary to popular misconceptions, RPM (or sign language) does not lead a nonverbal child to delay using speech. In fact, it promotes more fluid communication using an unexpected neural resource that is innate. See the 60 minutes documentary below (captions and transcript at the end of the page).

Here is a list of RPM resources and the information I recommend you to watch:

My first time introducing RPM to Lucien (8) . According to his mother, the school was teaching him the sounds of the alphabet, because he “can’t read”. Once I pulled out the stencils to increase the challenge, he spelled the word “child” without prompted on the spelling of the word. Within 20 minutes, he cycled through multiple levels of RPM, and proving his literacy, vocabulary, and critical thinking. (See description on video page for detailed breakdown).

Super-Smart kids show you when they are bored – Bella is deliberately choosing the wrong answers. From my experience, the super clever kids do that to show you how super bored they are with (1) the material, and (2) method level. It’s always time to increase in both different levels of difficulty (subject and task). Once mom started to teach more stimulating topics and improving her own technique, Bella made very rapid progress – she is now able to independently express her thoughts using a keyboard (later in the video– approx 4mins30secs).

RPM Global Support Network (Skype / FaceTime) – My FaceBook group for beginners to post videos of sessions and get feedback from others around the world:

Transcript of 60 Minutes Video:

VICKI MABREY: Over the past few years, statistics have shown a significant and startling rise in the number ofchildren diagnosed with autism. But there’s also been what some are calling an unexpected breakthrough in the disorder. It’s happened quietly, with just a handful of children, but it could have profound implications for nearly half a million children in the US alone. They are kids with autism, children many presumed are mentally retarded or locked in their own world, unable to communicate or even to think for themselves. That was the prevailing view of autism, until now. Tonight, we’ll introduce you again to the remarkable people who are breaking the silence of autism, a silence that led one couple on a desperate search for a cure.

00:45 MR. JON SHESTAK It’s like sometime between your baby’s first and second birthday, somebody sneaks into your house late at night and they steal his mind and his personality, and they leave his body behind.

01:00 MABREY For Hollywood producer Jon Shestak and his wife, Portia Iversen, it was like something from a horror film.

01:10 MABREY Like most children with autism, their son, Dov, appeared to be developing normally, a happy baby, learning to speak.

01:20 MABREY Then, at around 18 months, he lost the few words he had, stopped answering to his name and disappeared into the frightening world of autism.

01:30 MS. PORTIA IVERSEN I felt so helpless to help him, and yet, every minute, every day, I saw him getting further and further out of my grasp, and there was no expert out there to stop it.

01:40 MABREY Although there are varying degrees of autism, Jon and Portia were told their son had the most severe form. They were told he would never speak and probably was mentally retarded. Doctors said there was nothing Portia and Jon could do for him, except give him constant care and get on with their lives. Now, age 10, the only sounds Dov makes are unintelligible.

02:05 MABREY His behavior is filled with uncontrollable movements called stimming, or self-stimulation.

02:10 MS. IVERSEN Listen, people don’t want to do stuff with you out here if all you want to do is stim, OK?

02:15 MABREY How frustrated were you?

02:20 MS. IVERSEN The worst times, you know, were when he was–was in pain of some kind and we couldn’t figure out, you know, ‘Was it a toothache? Was it a stomachache? Did he have appendicitis? Did he break a bone?’ And he couldn’t tell us.

02:30 MR. SHESTAK That’s a–tha–that’s pretty helpless, and everything in you is saying like, ‘You gotta help him, fix him, make him feel better,’ and you don’t even know where to start.

02:40 MABREY If we wait for the feds to sort of actually make a…

MABREY Portia and Jon were told there was no cure and that there were very few scientists even doing autism research, so they formed a research foundation called CAN, Cure Autism Now.

02:55 That’s al–that’s a huge amount of work.

MABREY In just seven years, they’ve raised close to $20 million, making CAN the largest private supporter of autism research in the country.

03:05 MABREY But their biggest breakthrough didn’t come in the lab. It came from a boy their foundation brought over from India, a boy who seemed very much like their own son, but with some dramatic differences. This child is challenging every assumption about autism, turning the world of Portia and Jon and thousands of other parents like them upside down.

03:25 MABREY His name is Tito Mukhopadhyay, seen here when he was 10. Like Dov, he’s severely autistic. He, too, is almost mute and has little control over his body. Now 14, Tito still exhibits all the same symptoms of autism, but he’s doing what doctors, researchers and most parents of autistic children once thought impossible. He has learned to writeeloquently and independently about what it’s like to be trapped in an autistic body.

04:00 MS. IVERSEN I was able to ask Tito things I always wanted to ask my own son, Dov: ‘Why do you flap? Why do you rock? Why can’t you look in my eyes?’ You know? And Tito could answer all these questions.

04:10 MABREY Through his writing, he told her he flaps his arms because otherwise he can’t feel his body. He avoids eye contact because it’s difficult for him to see and hear at the same time.

04:20 MABREY What do you think the biggest misperception is that people have of people with autism?

04:30 MABREY What we are seeing in Tito is unprecedented. Bydefinition, people with severe autism have trouble with language, a notion that Tito shatters every time he puts pen to paper.

04:40 That they don’t have any understanding.’

04:45 TITO MUKHOPADHYAY Of…

MABREY Any understanding of what? ‘Of anything.’

04:50 [sil.]

04:55 MABREY When you first met Tito, were you skeptical?

DR. MICHAEL MERZENICH The nature of a scientist is to be skeptical, so I was surprised when I–certainly surprised, when I met him, to see the very compelling evidence that he was for real.

05:10M ABREY Dr. Michael Merzenich has been studying Tito for more than a year. A neuroscientist at the University of California, San Francisco, he says Tito is not only authentic,but miraculous.

05:20 DR. MERZENICH There can be little question, in the writing behavior of Tito, that he’s providing the answers and that the answers are coming from his brain.

05:25 MABREY If Tito seems a miracle of autism, this is the miracle worker–his mother, Soma, who gave up a career in chemistry to devote her life to teaching her son, even though doctors in India said he would never be able to learn.

05:40 MS. SOMA MUKHOPADHYAY At first, they told us he was mentally retarded because he looked that because he wasn’t doing anything. He wasn’t doing what a kid’s age level–a–a three-year-old child should do. He did not respond. He did not do anything.

05:55 MABREY Were you told how to teach him?

MS. MUKHOPADHYAY No, no, no.

MABREY What were you told?

06:00 MS. MUKHOPADHYAY To keep him busy.

Here, come. Run, run, run, run, run.

MABREY And she’s been keeping him busy ever since.

06:05 MS. MUKHOPADHYAY Find Pershing Square over here. Here. If you don’t look–where is it? Come on.

MABREY As a young child, she noticed he was staring at calendars, so she started teaching him numbers and letters.

06:15 MS. MUKHOPADHYAY What are the factors of six?

MUKHOPADHYAY Two.

MS. MUKHOPADHYAY Say that properly.

MUKHOPADHYAY Two.

06:20MABREY When he wouldn’t hold a pencil, she used a rubber band to tie one to his finger and taught him to draw lines and eventually to write.

06:25 MS. MUKHOPADHYAY Now why is it coming down the line?

06:30 MABREY If her method looks simple, just ask parents of other severely autistic children.

MS. MUKHOPADHYAY Sit.

MABREY They’ll tell you that, at one time or another, they too tried to get their child to type or communicate, with no success. But Soma’s method requires tenacity.

06:40 MS. MUKHOPADHYAY Write the F properly. Write it again. Write it again. No one will be able to read that.

06:50 MABREY For the past 11 years, this tireless taskmaster has spent every waking moment talking and teaching.

06:55MS. MUKHOPADHYAY Hey, now look at this. Oh, look at that.

MABREY …constantly prodding…

07:00 MS. MUKHOPADHYAY You’re not even looking.

MABREY …to keep Tito stimulated…

MS. MUKHOPADHYAY We get to put our names over here. How would that look?

07:05 MABREY …and his mind on track.

MS. MUKHOPADHYAY Look at that. No, not like that.

MABREY What if you slacked off? What would happen, do you think?

07:10 MS. MUKHOPADHYAY No, I did not, so I–I don’t know.

07:15 MABREY So you don’t even know.

MS. MUKHOPADHYAY I–I can’t even imagine myself doing that, yeah.

07:20 MABREY Her determination and her assumptions about Tito may have made all the difference.

07:25 MS. MUKHOPADHYAY There’s something? Where?

MABREY She never doubted that he could learn…

MS. MUKHOPADHYAY One, two, three. No.

07:30 MABREY …so she fed him a healthy diet of knowledge, from Shakespeare to geometry to music.

07:35 MABREY Tito, without your mother pushing you, how would your life have been different?

07:45 MS. MUKHOPADHYAY ‘I…

MUKHOPADHYAY Was…

MS. MUKHOPADHYAY ‘…would…’

MUKHOPADHYAY …have…

07:50 MS. MUKHOPADHYAY ‘…have been a…’

MUKHOPADHYAY …(Unintelligible)

MS. MUKHOPADHYAY ‘I would have been a vegetable.’

08:00 [sil.]

08:05 MABREY ‘I w’–(gasps). ‘I would have been a vegetable.’ So it’s a good thing that she pushed.

08:10 MUKHOPADHYAY Yes.

MABREY Yes.

08:15 MABREY He said he’d be a vegetable.

DR. MERZENICH I think that’s probably pretty–prettyaccurate.

08:20 MABREY Though Tito seems to have escaped that fate through his writing, he remains severely autistic. He can’t even pick up the pad and pencil to write without his mother’sconstant prodding and urging.

08:30 MS. MUKHOPADHYAY Write.

Write.

Write. Write it!

MABREY But when Tito does write, it is with astonishing insight, especially for a boy just 14 years old. He’s written hundreds of poems, including this one, which we watchedhim write from beginning to end.

08:45 MS. MUKHOPADHYAY ‘I have fancied a little dream, and the world is left unseen. With the light of your eyes, through the darkness of the night, I have held that little dream, beyond my world, beyond all scenes.’

09:00 DR. MERZENICH Tito is a beautiful example of the possible.

DR. MERZENICH Here, we have a boy that, largely through the empirical interaction of this boy with his–with his mother,a–a way has been found into his–into his ability, into his spirit.

09:15 MABREY Do you think that Tito is just one in a million?

DR. MERZENICH I think there could be thousands of–maybe tens of thousands of Titos out there.

09:20 MABREY Scientists will soon find out if that’s true. For the past year, Soma’s been testing her homegrown methods on a small group of children at the Carousel school in Los Angeles, the school attended by Jon and Portia’s son, Dov.

09:35 MS. MUKHOPADHYAY Here, Dov.

MABREY Like Tito, these nine- and 10-year-olds are severely autistic. Few can speak, and until recently, teachershad no idea if anything was actually getting through.

09:45 Who were the Native Americans there at the time?

09:50 MABREY Now they know.

Yes.

MABREY In the space of a year, kids who were being taught on a kindergarten level are now being taught math, social studies and science like fourth-graders.

10:05 MABREY Karen Spratt was their teacher. She had been trained in applied behavioral analysis, a treatment which has been very effective in teaching children with autism. Spratt says she was skeptical since Soma’s technique seemed todefy most of the principles of ABA.

10:20 MS. SPRATT Soma did everything that I was told not to do, kind of, as a teacher. So, for instance, she talked constantly.

10:25 MS. MUKHOPADHYAY The sun rises in the east or not? Pick up.

10:30MABREY And that’s the exact opposite of everything that you had been taught?

MS. SPRATT It is. In my training, it was that you give basic directions and wait for a response and not to do–to verbalize too much because it could be distracting.

10:45 MS. MUKHOPADHYAY If 26 plus two is 38–28…

MABREY Instead of being distracting, Soma’s ‘Rapid Prompting Method,’ as she calls it, seems to keep the children’s attention focused long enough for them to communicate.

10:55MS. MUKHOPADHYAY Pick up. 98, good.

MABREY She ignores their erratic movements and wandering eyes and focuses instead on the mind locked inside.

11:00 MS. MUKHOPADHYAY Straight lines or the line of longitude?

11:05 MS. MUKHOPADHYAY No, it is the line of longitude. Now tell me…

MABREY Did you ever second-guess your approach? Ever think, ‘Maybe this isn’t right?’

11:15 MS. MUKHOPADHYAY No, no. I’m always sure of myself, what I’m doing.

MABREY Why?

11:20 MS. MUKHOPADHYAY Because it works. It works.

MABREY And she offers some astonishing proof.

11:25 MS. MUKHOPADHYAY Tell me, what do you like best?

MABREY Dov Shestak was one of her first students, since itwas his parents, Portia and Jon, whose foundation brought Soma to the United States, but they never expected this.

11:35 MS. MUKHOPADHYAY Math, yes? You like math. Here, we can do some math over here to show off.

11:40 MABREY After years of trying nearly every technique available for autistic children, his parents were astonished. Within six weeks of working with Soma, suddenly came full sentences, complex thoughts and words spelled correctly.

11:55MS. IVERSEN …R. It is a flower, and that’s a bulb.

MS. IVERSEN The best way I can put this is it seemed like I was seeing the kid that had disappeared seven years before.

12:00 MS. IVERSEN And suddenly, you know, it wasn’t just the one word or gesture I was able to get. It was whole–wholesentences and ideas.

12:10 MS. IVERSEN Keep going. I know what you mean, but finish it up.

MS. IVERSEN I was like a kid in a candy shop. I didn’t knowwhere to start, you know? ‘What’s your favorite color? What do you want to be when you grow up?’ I mean, you know, all the questions you ask a child over years.

12:20 MS. IVERSEN You know, every day there was whole new sets of things I was finding out.

12:25 MS. MUKHOPADHYAY Here, Dov, tell me, why do you like math so much?

MABREY They learned that Dov is interested in religion and history and is a surprisingly good mathematician.

12:35 MS. MUKHOPADHYAY …Y. ‘It’s easy.’

MABREY We asked Dov how he had learned so much when no one had formally taught him.

12:40 MS. MUKHOPADHYAY L-I–come on. Go ahead. Come on.

12:45 MABREY He told us that all those years when people thought he was lost in his own world, he was actually listening to everything around him.

12:50 MABREY You learned to spell, and you learned to do math.

12:55 MABREY Although Soma’s method has not been studied scientifically, Mike Merzenich is one of many researchers who think it should be taken seriously.

13:05 DR. MERZENICH I think it’s almost certain that this method can be used with many, many autistic children.

DR. MERZENICH And the initial indication, from these studies in Los Angeles, is that it might apply even to the substantial majority of these children.

13:15 MABREY That they might be helped by this method, by…

13:20DR. MERZENICH Absolutely.

MABREY …someone prodding them and telling them, ‘Think. Do, do. Act.’

DR. MERZENICH Exactly.

13:25 MABREY Scientists can’t help but wonder what other secrets Tito, Dov and others like them still hold.

13:30 MABREY Are you happier now?

MS. MUKHOPADHYAY Y-E…

MABREY But one thing is certain. The ability to communicate has had a profound effect on Dov’s life.

13:35 MABREY ‘Yes.’

13:40 MABREY He’s happier now, and you don’t have to be a scientist to understand why.

MS. MUKHOPADHYAY …S.

13:45 MABREY ‘I can tell others my feelings,’ and that’s why you’re happy.

13:50 MABREY After our report aired in January, Cure Autism Now received thousands of letters from families asking Soma to work with their children. Since then, she’s worked individually with some 70 kids with autism, and the results, parents tell us, have been remarkable. Soma and Portia are now finishing a manual that will teach others how to use the Rapid Prompting Method.

I dreamed that I was Hitler’s musician therapist

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This past night, I dreamed that I worked for Hitler during WWII. Because of my interdisciplinary education, I was able to pass as a professional elite in his private residence. I got picked up one day as I was passing the street, hurrying to shop for my family. I was grilled about my destination by a gendarme. I was dressed as a very stylish 1920’s mademoiselle, and made a firm assertion in my unaccented German that I was on my way to der schloss–the old palace where he had taken up residence. I seemed to have impressed that lone guard so much that he cleared the path to the front door and escorted me with an entourage.

From the moment that I entered, my survival instincts kicked in. I knew that I would have to remind and prove to everyone what my training was, just to make it from hour to hour. Hitler’s paranoia infiltrated every rank, and everyone was a suspect for wearing the wrong color eyeliner. I was fortunate that I had dressed in clothing that matched my assertion. I was wearing a beautiful maroon and beige tweed wool coat. It was full-length, but only two buttons were closed. This allowed for my outfit to be seen peeking through the coat. I had a beautiful wool skirt with large pleats in dark chocolate fabric. The pleats were sewn flat for the upper half to be form fitting around the hips. The ribbed sweater and silk blouse with starched collar completed the outfit. I wore brown silk tights and beautiful leather shoes with a small pump heal and Mary-Jane strap with a stud button. My hair was long and turned up into a French bun under a wool felt hat with a brass buckle. In a way, I almost looked like Mary Poppins–modest, sexy, stylish, but beholden of superpowers.

Once inside the palace, I had to re-introduce my credentials to everyone who paused to check on me. Instinctively and against all reason, I chose the arts over a practical profession, although any excuse was up for grabs in that situation. Every time I asserted that I was a Maestro, they pushed me further and further into the staff quarters where experts prepared to be of service. Somehow, being the Maestro set me apart from others who were shoemakers, plumbers, and chefs. I was regarded as a true professional, and somebody who was worthy of being spoken to in high vocabulary. I was given the largest storage space for my clothes, which was a house closet converted into a locker for personal belongings for those who were in the expert quarters. These were actually house closets converted to costume racks like those in a backstage dressing room near the props.

My closet was located directly next to Hitler’s dress clothes closet. The room was vacant with only a small round table and wooden chairs.  The dusty pink carpet was a remnant of the previous tenant who used this room as a back-quarter conference area near their bedroom. We were expected to sit there and wait on command. Hitler’s door was right in that room. He was on the other side, loudly pacing and cursing as he used that room to prepare himself mentally and physically for each task. We were expected to sit there and wait for him to overcome his anxiety and to be able to demand some request from and of us.

Since I was the only one trained in the social sciences, I was also the one that he turned to as a full-time therapist. When he was too flustered to figure out if he should put on his left or right sock first, he would come to me and ask for instruction. Those instructions were shrouded by mundane tasks, but truly held a double meaning as he was asking about invasions and strategies. Using his socks, clothing, or what he should eat for his next meal, we discussed everything in true psychoanalytic fashion. Since Freud was all the rage at the time, I was able to earn his respect for what I was observing, witnessing, or analyzing from his experience.

Hitler was a known classical music snob, and it terrified me that he would grill me before every public performance. However he was too anxious with his own daily tasks such as combing his hair to perfection to involve himself with that. Instead, he conceded and allowed his staff to select the experts for his use, and for his disposal on a whim. Within an hour of my arrival to the palace, there was already one public meeting where Hitler was expected to entertain high-ranking officials. I rushed to the podium, grabbed the conductor’s baton, and conducted the orchestra without knowing what they would be playing. I had never seen the score before nor had I rehearsed any of the conducting. Yet I flapped with that stick as thought a gun was held to my head. I succeeded in demonstrating my competencies to the highest bidder.

When we returned to the room, Hitler was mingling in the expert room and cozied up to me. He thanked me for that wonderful Wagner rendition. He used the encounter to ask me more about what I thought of his outfit. His insecurities were pouring and leaking and dribbling and flooding the space. None of the other experts were capable of standing up to his constant grilling about his appearances, and many were shot and left for dead.

Next to me at the round table was an artist who was hired to draw all of the scenes that had occurred. He was a sketch artist with impeccable skill for drawing faces. He was always on edge, worried that he was drawing Hitler with one extra strand of hair. One day, a small Aryan child was at the table. He was obviously a child of high-ranking people allowed in that back room. He was watching all of us draw sketches to help the artist practice. He was fascinated with my drawing of the sketch artist’s face. I had started with his hairline first. The boy grabbed my pencil and insisted that he knew how to do it better. He began boldly adding strokes to the hair until it looked like a child’s caricature. He seemed embarrassed when he noticed the ruined sketch, but covered it up with some excuse of “there, I fixed it”. I hated this kid and his privilege, arrogance, and pomp.

One of our jobs was to go through every published scientific article in the German archives as well as captured libraries. We were expected to revise the manuscripts to reflect scientific findings that Hitler imagined. For example, a study about lab rats being killed from poisonous gas was edited to reflect that the rats had a genetic (non-Aryan) predisposition to susceptibility to safe gasses. Because we were the experts, nobody in the palace reviewed our work. We sat with a calligraphy pen rewriting all of the science of the past 100 years. Whatever we wrote was final. As the lone expert, I also pranked Hitler by sometimes putting lyrics into those articles, or curse words from other European languages. We knew we could have fun with this because we were the only peer-reviewers in this ridiculous charade. Still, we did those pranks only when Hitler was out entertaining, just in case he would pass through the round table and read something fishy.

The days flew by in a whirlwind of velvet gowns, concert apparel, and singing roles in entertainment productions. About three months into the war, we were waiting for Hitler to get dressed for yet another public appearance. From his breathing alone, I was able to sense that he was in full-blown panic, pacing his room like a maniac. I took a large orchestral score with me and tapped lightly on his door. I asked, “herr Hitler, may I sing for you from today’s performance to make sure that you approve of the musical selection?” The door was flung open by a purple faced steaming scrawny shell of a man. He was haggard and angry. He didn’t just fly over the cuckoo’s nest, but he was laying golden eggs in them. As I began to sing the opening note without a reference point, which indicated my perfect pitch, he visibly began to calm. When some rational thought returned, he asked again about my role in the palace. I reminded him that it was my job to cultivate the finest musical selections to fit each mood. I gave him an example of an upbeat Wagner score to demonstrate power, and contrasted that with a soprano aria to indicate mellow mood setting for evening when entertaining the ladies. He was so impressed and reassured by my extensive knowledge, that he used me as his right-hand pretty-thing as he went from one public appearance to another. From that moment, he insisted on having me on hand at all times as a representation of his sanity. He relied on me to keep him calm and powerful as the way he wanted to be seen. Through the arts, I became his therapeutic adviser.

I woke up reassured that I have selected a career in my current life that would not only help me help the masses. I don’t have to be Hitler’s right-hand man anymore. I already hold the power within my own abilities which was granted to me through the through my exposure to the arts. I am alive and kicking because of music. For most of my life, I faced death for my choices, but my choices always won.

Image of my maternal grandmother, a survivor of Auschwitz, being soothed by my sister and niece. I have been teaching music to my niece for four years now.

“Congratulations, you have a disease!” MCAD Diagnosis today

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“Congratulations, you have a disease! Or an explanation for what is going on, and meeting published peer-reviewed diagnostic criteria for a mast cell activation syndrome.” I never thought I’d hear these words. Today is the day that my MCAD was formally diagnosed by Dr. Lawrence Afrin, hematologist and MCAS expert in New York.

Every single one of my labs came back normal, both blood and urine. There were elevated von willebrand factor, which only speaks to inflammation in my system, which I already knew. Otherwise, nothing would’ve been able to get me the clinical diagnosis. And then, the motherload: My scope from 2015 was restained and the mast cells were more than 4 times the normal range for at least 2 tissue samples, which is the clinical requirement for a diagnosis. I want to add that after that scope, the GI declared histological remission for my crohn’s!

Pictured is the pathology report from the 2015 tissue samples, with Dr. Afrin’s words:

  • Tissue sample one is the second part of the duodenum of the small intestines. Originally ‘Normal’, Afrin staining: up to 52 mast cells per high power field. Upper limit of normal is 20 (results more than double). Two mast cells seen lacks neoplasia “nothing suggestive of mastocytosis” abnormal based on the numbers, but consistent with mast cell activation.
  • Tissue sample Two & Three, stomach and esophagus all normal. Didn’t even do the standing, but that’s okay. Because slide 4:
  • Four – terminal ileum, the farthest up that the colonoscope can reach in the small intestines where it joins the large intestines. Original normal. More than 4x upper limit for normal, and not a single sign of mastocytosis.
  • 6-7-8-9, did not do staining, but there are 2 biopsies that show substantial increases in mast cells “I’m looking for two pieces of evidence for the diagnosis”.

Congratulations, you have a disease!

What does this mean? Find an h1/h2 antihistamine protocol that works for you. If one drug triggers a flare, don’t give up. Ask your pharmacist to help you with formulations until you know which excipedent causes you to flare. on the bright side, prognosis is normal lifespan, except the quality of life can be chronically miserable until relief is obtained. As a final note, Dr. Afrin noted that 85% of MCAD patients do not have elevated tryptase levels, as that is only a marker for mastocytosis, a very rare variation of MCAD.

Facts:

  • Children with mastocytosis have a tenfold autism prevalence. That single study has not replicated yet in MCAD because no pediatricians are  aware of MCAS or recognize or diagnosis.
  • Nearly 80% of patients with Ehlers Danlos Syndrome (EDS) have an MCAS comorbidity.
  • 85% of MCAd patients do not have elevated tryptase levels, the only test allergist know to use today.
Link for sharing publicly for awareness: