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 Adams 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 David 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 Jonathan 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: “Jonathan 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 Adams, 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 Williams, Dip Ed, BA Hons

author, lecturer and autism consultant

http://www.donnawilliams.net