Another Brilliant Article from Donna ..........

[Guest guest]

" This is no time for autism gimmicks.

Another day, another gimick. We're gripped by a global recession,

people are losing their jobs and homes everywhere, Americans on or

hoping for benefits and services are worried will they lose them when

foreign countries foreclose on their bankrupt country already

trillions in dept. But in the email, those in the autism world are

told there is hope for just $240 with the purchase of the Original

Light and Sound Brain Machine, or if you like, you can get the ALL

NEW version for $295. What? Was the old version crap? Are they

flogging them off?

The advert so riled autism advocate Bernie that she wrote to me

wanting to interview me on my views about this kind of solicitation.

So let's look at what the advert says before I enter into an

interview about it. Here's the ad:

Can brain functioning be improved with flashing lights and

pulsing tones? Many seem to think so reports Siever, CEO of

Mind Alive and the inventor and developer of a unique patented audio-

visual device called the DAVID machine, which stands for Digital

Audio Visual Integration Device. The actual creation of this machine

in 1984 was driven by the needs of others at first to reduce stage

fright, stress and anxiety and later to help people cope with their

Attention Deficit problems such as concentration. For many years it

has been known that sound therapy utilizing strictly sound training,

which de-sensitizes the person with sensory issues, has been helpful

for many on the autism spectrum. By stimulating the auditory system,

and through it, by stimulating the brain, methods such as the Tomatis

Method has been able to reduce the autistic symptoms to varying

degrees.

Now whilst the Tomatis method was widely cited as a `cure' for autism

in books like Sound of A Miracle, the excitement was short lived when

studies failed to back up the claims of the company. Whilst the

therapists who had paid thousands for the equipment to become Tomatis

therapist claimed up to a 60% success rate, the studies found nothing

like this and there was always the possibility that what results were

had could sometimes just as likely to be placebo effect. They then

added nutritional element to their program. Why? Was their

technology alone not going to work?

Each autistic person is different and may respond differently to

this program. In some cases results are seen within a few weeks,

There are still good days and bad days but the trend is often upward,

especially when you look back over a period of a few months. In many

cases improvement has been noted in the following areas, decreased

hypersensitivity to sound, reduced tactile defensiveness, improved

language skills, improved appreciation for food and less picky in

food preferences, better self image, improved social skills, better

eye contact and less aggressive behaviors.

And of course hope and optimism are great healing forces in

themselves. But they don't have to have a price tag. You can get

them for free.

Combining a method similar to this auditory training technique

with the visual aspect of flashing lights also seems to have a very

strong impact on the minds of those with autism spectrum disorders.

The light and sound device consists of a set of earphones and eye

goggles. What makes this piece of equipment work is a series of timed

flashing white lights, coupled with intermittent pulsing tones that

graduate in intensity so as not to overwhelm the listener.

The same effect could be had for free from an hour a night in a wild

nightclub or games arcade and sensation-seeking people with autism

often use these things to overstimulate themselves into manic states,

to awaken themselves out of pre-conscious states and some will also

attempt to desensitise themselves sensorily (or to sound-

light/overload phobias) by taking small digestible doses of being in

such places. Others will learn they can advocate and modulate what

their senses can cope with in such places through the use of sound-

reducing headphones and sunglasses. And that doesn't cose $240 or

$295. And it really comes down to how the person with autism is

MOTIVATED to use sensory stimulation. If they aren't seeking to

desensitise themselves, then that's just not where they're at at that

time.

The actual process that take place is called brainwave

entrainment, which is exactly as the name implies that is, training

brain waves to fall into an specific pre-determined brainwave pattern

such as the alpha state. This is much like what happens during a

similar process called biofeedback, which helps the patient

concentrate to relax their minds. The results are even verified by

tracking brain wave patterns through a clinically administered EEG.

The same or even better results are achieved even though a different

process is utilized. The mix of the two sensory tools gently bring

the mind to a relaxed calm alpha state which is the state that is

achieved through years and years of training in the process of

meditation all in a single session. No wonder it has such a wonderful

effect on people. When my son was first diagnosed with

autism, I was so frustrated with him that I actually went " outside

the box " of traditional thinking and decided to give this unit a try.

We were desperately looking for something other than the typical

route prescribed by doctors of medicating our young child. This was

way back in 1994, which were most likely, a therapy ten years ahead

of its time. With the help of the staff of Mind Alive we managed to

get Jonny, then 3 ½ years old to try the DAVID. Placing the earphones

and eye goggles on his little head was no easy task. In spite of this

fact, we persevered. Later we discovered doing this once he was

sleeping was far more effective and less intrusive. We saw such

great results at first that we decided to run our own little " mini

study " on him. For a period of six weeks we slipped into his bedroom

after he had fallen to sleep and slipped the gear on his little head

three times a week. The changes were quite evident in the areas of

improved behavior, increased eye contact and more appropriate

interaction to mention a few observations. His doctor even

commented: " has been using a sound and light machine which

his mother and the program perceive to have been of benefit to him.

And he was 3. And his previously despairing parents had THEIR MOODS

lifted through BELIEF and EMPOWERMENT by investing their HOPE in an

idea. But I've seen children dramatically improve simply by getting

the parents to start playing with each other, being silly, laughing,

getting themselves into a space where they are not resonating despair

and depression every time they interact with their autistic child.

Having depressed parents is an incredible burden. Depression can be

deeply contagious when everyone feeds off everyone elses downward

spiral. But my parents experimented too. But they used things which

cost little or nothing - physical patterning, regimentation,

surrealism, mirrors, colored light bulbs, a record player, a

typewriter, an indirectly confrontational approach, gestural signing,

the use of representational objects, environmental adaptations,

reverse psychology, complete nutrition … We live in an age where

advertising subtly convinces parents that if they didn't BUY it, then

it's not SPECIAL, but much of what `herds cats' is `magic'

and `medicine' and much of that has no price tag.

Although there is no formal information available to support this

observation, there is certainly some informal information suggesting

that this might in fact be a useful therapy " It is certainly worthy

of further exploration and I will be in contact with the people using

the machine for further information about it " Pioneering new ideas

are what I tend to gravitate to though carving out new things is no

easy task. We were so impressed with the technology I decided to open

a clinic to help others called " The Wellness Center " . Due to the

sensory nature of the equipment the biggest challenge was getting the

children to have the gear so close to their faces though this

obstacle has since been overcome by using external light and sound

tools. As long as we were able to get the gear on the other children

with autism the results were typically good. . I then became pregnant

with my fifth child and after two years of operation closed the

clinic. The easiest alternative to the actual clinic is the portable

device carried by Mind Alive.

And I'm sure that saved on rent too. And these days of high petrol,

people prefer to buy at the click of a button and save their petrol

money as well as get reduced prices which don't incur the seller's

rental costs for their clinic. Thing is, you can even keep your $240

or $295 because you're really gonna need it this Christmas, you're

gonna need it for food, you're gonna need it for respite, you're

gonna need it for that first school camp, you're gonna need it for

the yoga class which might get you into a positive headspace. Most

of all, you're gonna need to keep that $240 or $295 because when you

feel your wallet, you'll remember, you are ALREADY the expert, you

are the visionary, the explorer, the inventor. Maybe its a bunch of

cardboard boxes to play in and tubes to make sound through. Maybe

it's a pile of dead leaves to throw about. Maybe it's just learning

to discover how to do FOR YOU so they can relax more. There's a

million medicines and most of them are free but it's often not what's

on the truck, but the way it's delivered, so deliver with respect.

Now here's the interview from Bernie , autism advocate, parent

of an autie adult and champion of families' empowerment:

BERNIE:

Ha ha, you know how obsessional I get so here is many questions, you

choose the most appropriate.

What is your take on all of this?

My immediate reaction for people with sensitivity to light was `oh my

gosh, how terrible'. I just think of when there are bright lights or

bright sun light how Zoe's eyes stream.

How Zoe gets the best information processing, communicates better,

etc when it is calm and dark?

Do you think that in the 21st century with all the information

available from you and others on `sensory issues' and `sensory

profiling' there should be a specific protocol that has to be used

before entering any child into this method.

DONNA WILLIAMS:

I think there should be a protocol for the PARENTS to screen for

depression and to examine how they've altered their own social

patterns with each other, with the rest of the household, with the

wider community, and help get THEM into a healthier, more empowered

head space. I think parents need preliminary screening as to WHY

they are spending money on any given therapy. If their child has

health or dietary issues have they addressed those? A brain will

process information better when a healthy gut and immune system gets

a good level of balanced nutrition to the brain. And what of

Dyspraxia. Brain Gym exercises are free on You Tube. Have you

thought about empowering children to use sunglasses and sound

reduction headphones to manage their own levels of overload? Because

once they realise they don't have to fear something they now have

control over, most will only use them when they need them.

And regarding protocols for the child before such a treatment? Well,

these businesses are profit making businesses, they're going to want

this client, this sale. So they'll see what they want to see.

For example, can they tell Rapid Cycling Bipolar from ADHD? 50% of

cases of ADHD are actually misdiagnosed kids with Rapid Cycling

Bipolar. Did they screen for unhealthy diets which could exacerbate

sensory disturbances or epilepsy which could mimic them? Can they

tell phobia from sensory hypersentivity? Can they tell sensory

hypersentivity from auditory and visual agnosias in which overload

happens because the person can't easily put MEANING to what they see

and hear. Can they tell B vitamin or omega 3 deficiencies from

sensory integration issues? Because lack of B vitamins will also

result in sensory hypersensitivities and slowed information

processing. Have they looked at the social role of hypersensitivity

behaviors in Separation Anxiety, learned helplessness, Exposure

Anxiety, Social Phobia or other emotional disturbances? If not an

unhealthy family dynamic remains. Have the looked at the role of

depression in sensory hypersensitivity and whether the family's own

depression-driven fixations with pathology and treatment contributes?

And even if they had the multidisciplinary knowledge and experience

to do such screening, would a salesperson looking to sell their own

product do any of this?

BERNIE:

Should there be a `dark room' and a `light room' that people with

autism could go into before they enter into this method and a good

recording of their responses before they are bombarded with " gradual

INTENSITY of tones through earphones " whilst also putting them

in `goggles whilst flashing WHITE LIGHTS in front of your eyes "

What about the percentage of autie people who have epilepsy that

perhaps hasn't yet materialised? Could this method induce epilepsy

for some?

DONNA WILLIAMS:

I'd think so. And there are many forms of epilepsy which are elusive

to test for.

BERNIE:

How `autistic' are the people they are using? Are they able to say

get those bloody lights out of my face?

Do they calm because they think the calmer I am the quicker I will

get out of this hell hole?

DONNA WILLIAMS:

I totally agree. One of the problems is that if a child is

distressed by the process, fixated despairing parents will often find

all the more reason to feel `a-ha, yes, they DO have sensory issues,

see?' And many selling a product will also take it this way because

their natural motivation is not to get rid of a potential sale and

they are often deeply invested in their own righteous justifications

for making the sale (I'm being of service, I'm helping).

BERNIE:

" Pioneering new ideas' is what is quoted and for some who experience

a buzz that may be true or is it just dam right torture for others?

Are there a percentage of `buzz' people who like the experience and

appear calmer for the buzz, then because they are calm of course they

will process information etc?

DONNA WILLIAMS:

There are those with epilepsy who will appear calmer after a

seizure. There are also those with Rapid Cycling Bipolar who will

calm after a bender and who may exhaust the triggering effect of a

particular stimulus from overdoing it. Like I used to go nutso manic

from pink streetlights and chandelliers and red patent leather and

green fluoro plastic but these days I'm just `pleased' by them and

some of that was just I over did them.

BERNIE:

It doesn't talk about what method is in place for those who need to

communicate `I hate this'? What do you think needs to be in place in

order for the child who presents as not be verbally communicative to

give an informed choice as to whether they choose to be used as

guinea pigs?

DONNA WILLIAMS:

That worries me, of course, but what worries more is the

psychological programming of the parents. It's the parents who are

the guinea pigs and often the family is in great need of some fun,

some respite, some re-programming to stop fixating and re-discover

their own identities. If they don't the family often ends up broke,

stagnant, rigid, or breaks up, and none of that helps any autie.

BERNIE:

The Autism Today article states: " For many years it has been known

that sound therapy utilizes strictly sound training, which de-

sensitizes the person with sensory issues, has been helpful for many

on the autism spectrum. By stimulating the auditory system and

through it by stimulating the brain, methods such as the Tomatis

method has been able to reduce Autistic Symptoms to varying degrees " .

Do you believe this to be true?

DONNA WILLIAMS:

No. It turned out to have helped SOME. I understand the percentage

was about 10% and it's not clear how much of that was placebo effect,

other life changes or things happening at the same time or because it

relieved severe Tinitus complicating the person's autism.

BERNIE:

The Tomatis method was invented 50 years ago by Dr. Alfred Tomatis, a

French ENT specialist. He was treating people with hearing damage

caused by noise and these people also had motor, speech and

psychological problems. (Henry Spinks Research Information Centre) Or

do you think with what we know now that these people were maybe

presenting as being on the autism spectrum.

DONNA WILLIAMS:

Look, certainly. Many things can present as `autistic'. Reactive

Attachment Disorder, undiagnosed deafness, agnosias, apraxias,

aphasias, Selective Mutism, mood disorders, compulsive disorders,

anxiety disorders, gut, immune, metabolic disorders, separation

anxiety and learned helplessness, deficient diet, poisoning, some

epilepsies, certain personality traits in disorder proportions.

Essentially, we've confused `autisic presentation' with `autism' and

observation alone isn't sufficient to tell how someone is processing

information. Even in testing, someone could perform badly on some

tasks yet outside of the testing situation these functions work

better. You can also get people who function outside of what we

expect for autism who on closer inspection are cognitively very

autistic. So it's not at all as straight forward as proclaiming all

of one's clients as autistic. For example, as a consultant, I've

had `autistic' clients who I see as having agnosias, dyspraxia,

aphasia, Selective Mutism, learned helplessness etc, and when I put

in place the strategies for those things, the child stops looking

so `autistic' and I'm asked 'so is my child really autistic?' And I

reply, what if autism is actually a social construct based on us not

thinking holistically? In other words because we can't understand

which collections of underlying things can combine to present

autistically? I'll also meet some clients whose personalities are

clearly autistic so it wouldn't matter how many `extras' you helped

them manage, the person will still be `autistic'. So my view is that

we think we're enlightened but we're actually the fools of tomorrow.

BERNIE:

They have claimed increased eye contact – but from my experience of

my daughter she maintains good deep eye contact, when she is

terrified. It is fear or concern one sees, not meaning full natural

eye contact. Do you think people really understand eye contact for

people on the autism spectrum?

DONNA WILLIAMS:

Faceblind children will avoid eye contact or stare through the face.

Those with visual perceptual fragmentation will flit from piece to

piece, unable to perceive the face as a whole or use peripheral

vision, look through their fingers or use tinted lenses to filter

enough incoming info their brains get enough time to more cohesively

process what's left. Some are so meaning deaf (verbal agnosia) they

have to watch actions to understand speech so the face is an

irrelevant distraction. Some are so meaning blind (visual agnosias)

they watch the objects and wait for the actions so the speech and

face are useless to them unless the person interacts via objects and

gesture. So we live in ignorant times. Yes, those with Reactive

Attachment Disorders, Social Phobia, Exposure Anxiety or some

personality disorders will also avoid eye contact, or, as you say,

stare at the face out of fear, but forcing eye contact doesn't solve

that and actually playfully avoiding eye contact can cause some

people to begin to seek it. So I think we need to get over this

cultural fixation about eye contact and the `abnormality' of avoiding

it. Clearly it is very normal, even sometimes healthy and beneficial

to information processing or involvement to do so and some cultures,

such as the Japanese or Indigenous Australians, it has been a culture

norm not to over-do eye contact.

BERNIE:

They claim: Children started to make sounds. Do you think the sounds

could be `get me out of here' or don't put me back in here' or even

I'll make the sounds that you want me to make so that I don't get put

back in there'?

Or could the sounds could be wow I am having a buzz and then if I

make sounds I can go back in there?

DONNA WILLIAMS:

Well, if the parents have become inspired, more hopeful people,

regardless of WHY, then the child may well become less withdrawn,

self protective, and begin to make sounds. But you could go get a

rock from your garden, imbue it with magical powers in some living

room candlelight ceremony, and agree to invest great hope in it and

behave accordingly and you may still find the child feels you've

lightened up and the heaviness has lifted.

BERNIE:

I think what I am asking is how would the people who advocate for

this method make sure that the person with autism is going to

experience a positive experience from this method rather than a

negative experience?

DONNA WILLIAMS:

They're sales people. We should expect from them what we'd expect

from a sales rep or salesperson. One of the problems is we're

hypnotised by the words `therapy', `treatment', 'success'. It's NLP,

neuro-linguistic programming, and it works on the parents. But it

also undermines their own expertise, it stops them exploring and

discovering what works best with THEIR child. It removes money from

their household which could have been used on respite, a trampoline,

swimming lessons, or even counseling for the parents.

Thanks for the interview.

Warmly,

Donna , Dip Ed, BA Hons

author, lecturer and autism consultant

http://www.donnawilliams.net "