Autism : Extreme Love – Louis Theroux’s Documentary

This documentary follows the experiences of families and teenagers with Autism and Asperger’s Syndrome as they go about their daily lives.

It takes a very honest and powerful ‘warts and all’ look at the Autism experience and openly incorporates the perspectives of both teenagers with autism and their parents.

Theroux does more than just talk  to teenagers and parent’s, he actively follows and engages with them in their schools and their homes. His portrayal covers both the extreme love and dedication that parents of teenagers with Autism experience alongside the very real day to day issues of exhaustion, frustration, fear and concern for their teens as they become young adults and step forward into the world.

In doing so this documentary explores life with Autism from just about every angle tackling many of the issues that are often hidden or under-represented within mainstream media.

It is by far the most balanced and revealing documentary on the Autism experience  I’ve seen in a very long time.

I thoroughly recommend it and would love to hear your thoughts on this or any other  documentaries, movies or books you would recommend?

Bait and Switch Boys….. Bait and Switch

Omen of the Birds (1964) ...Miami Vice -- Dead...

Smoke and mirrors,

Myths and lies,

It’s not our product,

It’s the way it’s applied.

Cigarettes don’t cause cancer,

Though consuming them might.

Immunizations don’t cause autism,

Though injecting  too many of them,

Might.

Tis’ the same old crime,

Of bait and switch,

It’s not our product,

It’s the way it’s applied.

 

Press This, Reblog, Like, View & Follow: Questions from a Novice Blogger

facebook like button

So I’ve been blogging for a little while now but I’m still unsure about how some of the functions on this site work and why I should use them.

For instance ”Press This” – What happens when you Press something? What’s this function for  and what are the benefits of  ‘Pressing’ something?

Reblog – I get how you reblog another persons post but I’m not sure what the point of  reblogging is or what the benefits of reblogging are. So are there benefits?

Like- Is this just a way of saying I’ve read your post and I like it? I’ve noticed there are some brilliant posts out there that don’t have the Like button ticked but do have lots of comments. So what’s going on there? Is it better to comment rather than Like?

Views and Follows- This little blog has had 600 views with only 50 followers so how and why does this happen? Is it meant to be a good thing that people are viewing posts if they don’t then choose to follow?  Does it mean that people have looked at  the post but not liked the posts?

How do you use these functions and why do you use them?

Cheers Seventh.

A Call To Action

As the parent of a child with autism I don’t need a pat on the back for all that I do.

Nor do I need to be placated with the odd carer’s lunch.

I don’t need to go to workshops every week,

Or wear a gold name badge to tell me I’m important.

 I don’t need to be invited to meetings

To serve as the token parent of a child with a diffability

Just  to make you look good.

Chances are I’ll be far too busy looking after my son to attend.

If you really had any understanding of the issues that parent’s of autistic children face

You’d already know that

Wouldn’t you?

Or perhaps that’s what you are counting on.

Either way I don’t need to be the only person in the room not being paid

To sit through yet another round of dead-end discussions

That  skillfully fail to address the real issues.

So let me make this clear

I don’t need to attend carer’s workshops

I don’t need someone condescendingly telling me to take care of myself

Whilst  simultaneously denying me access to a living wage

I don’t need any more bureaucratic solutions.

To what is in essence a very human condition

So please stop waving your over-designed justification

Of your  compulsive need

For economic rationalisation at me

I’ve got some economic rationalisations of my own

Carer’s save tax payers billions of dollars every year

Given that cost benefit analysis

Are you seriously going to try to tell me

That the country can’t afford to pay parent/carer’s

Even so much as a sub-standard wage

For all of the work that they do?

While you’re  mulling that one over here’s a list for you

The things I need

I need society to pull its head out the sand

To stand with me and make a sincere commitment

To providing  our son’s and daughter’s

All of the help they will need

To respectfully be

Who ever they are

In the best

Most humanly honourable way.

This means more than just standing by

And watching as policy makers offer our families

 A maybe

In 7 years time

We might pop a few measues in place

My son will be an adult in 4 months

He can’t wait 7 years.

He shouldn’t have to wait 7 years

Just to be heard.

So please

If you do nothing else for the rest of your life in the area of disability advocacy,

Where ever you are in this world

Please stand up for disability rights

Stand up for disability reform

Be one of those rare few people who

Help to create change.

In our life times.

Autism: In reality does it matter how it’s defined?

Autism (journal)

The medicalised understanding of  Autism as a disability has become so ingrained within our society that access to support systems  designed to assist those with Autism now hinges almost entirely on a medical confirmation/diagnosis before  any assistance can be given. For many children and their families, remaining undiagnosed equates to being shut out of the valuable resources they require.

Already the current lack of clarity and professional understandings as to what Autism actually is, and the physical symptoms and sensitivities involved, as well as the broad ranging disparities experienced both between levels of intellectual ability and functionality, can be seen to be creating the splintered and inconsistent access to support services that those with Autism and their families report experiencing.

We know, for instance, that  misdiagnosing a child drastically reduces their capacity to access  early intervention.  What we haven’t known until now is that the flow of misdiagnosis has been so wide-spread.

The emergence in recent years of newly diagnosed adults illustrates the folly of placing too much weight on professional medical definitions and understandings of Autism.

The rise in the number of adults being diagnosed with Autism  also begins to illustrate the vast social and personal issues  yet to be addressed within the areas of defining, diagnosing and adequately supporting those with Autism within our communities.

The gender disparity issue within the diagnostic rates between males and females with Autism  now stands as yet another example of how falsely constructed and  uninformed professional definitions of Autism  have failed so many within our society.

The artificially constructed absence of women within the Autism arena is only now beginning to be addressed. As such the past failures of the current system of diagnosis should not be going unheeded.

The continued ramifications of relying on a poorly framed definition of Autism, along with the lack of acknowledgement of  the string of  co-occurring physiological conditions it can entail, is having a devastating effect on all concerned.

When I look at my son’s behaviors it is hard to deny that he has Autism.  Yet those who do not know him assume that because he looks ‘normal’ physically he must also be ‘normal’ in all other ways.

Strangers sometimes think he is playing with them when he speaks to them. As a result they very rarely take him seriously when he tries to address them. When I explain that he has Autism people still fail to take this in, as by conventional social understandings of Autism, my son’s attempts at polite sociability  often fail their “in your face” autism rating scale.

The implications of such reactions for my son are huge as they equate to a social denial  and misrepresentation of his personhood.

His Dyspraxia (difficulty with physical co-ordination and speaking clearly) I view as an element of his Autism.

Yet his Autism is not viewed as an element of his Dyspraxia.

Currently Autism is medically considered a neurological condition of “unknown origins”. While Dyspraxia is understood as  a purely physical condition caused by  a neurological dysfunction .

I find this play on words hard to understand when the two conditions occur in tandem and together shape my son’s way of being.

I also find it hard to understand why his sensitivities to food textures are currently medically considered to be due to his Autism (no known origin)  yet his sensitivities to the ingredients in some foods are considered to be a physiological issue (of known origin).

To me these things are one in the same. They are merely being understood in different and exclusionary ways.

I do not understand why  either condition is being understood and defined as having a different method or pathway of biological interaction by the medical community?

The refusal of those within the medical community to view Autism and it’s co-occurring physical conditions as a whole, routinely downplays the intensity of  the sensory issues that Autists experience while at the same time creating the very measures that continue to deny the reality that Autism encompasses both physical and neurological sensory experiences.

Sensory issues are not psychological. They are physical. The misrepresentation of Autists as always being emotionally shut off, anti-social and incapable of pleasant interactions may be a broader reflection of the misunderstanding of the impacts of sensory issues on Autists.

So yes I think it matters greatly how Autism is being defined.

Reasons to Question Current Definitions and Understanding of Autism (part two)

Autism Awareness

In recent years there’s been a lot of talk about an Autism epidemic. The term epidemic is usually reserved for diseases/illnesses such as the black plague.

So is Autism then to be understood as a disease?

If so a disease of what…?

The brain?

The immune system?

The digestive tract?

Past studies have searched for a connection between both   immunological  differences, digestive tract disorders and Autism.  Andrew Wakefield’s discredited study is perhaps the most common example used in terms of this.  Yet whilst it has been well documented that Wakefield’s study, which attempted to provide a causal chain of evidence between digestive disorders, MMR immunizations and Autism, has been discredited, there is still a high rate of symbiotic occurrence between those who experience Autism alongside auto-immune conditions and gastro intestinal difficulties.

Though it has been common in the past to perceive sensory issues as only impacting on the externalities of bodies the persistent link between autism and food sensitivities and digestive and intestinal disorders indicates the potential to view the sensory issues of those with autism as a whole organic experience.

If we add to this understanding the unusually high level of sensitivities and reactions to medications, foods, materials, smells, sights and sounds  that those with autism experience we can begin to see an overall whole body experience emerging. One that does not just implicate either a neurological disorder or an immune system disorder but an entire body experience.

When viewed as a whole, the conditions those with autism describe experiencing indicate that the sensory issues they endure, may be occurring on multiple cellular levels of bodily interaction. This would suggest the validity of investigating how the multiple sensory sensitivities that those with autism express experiencing both internally and externally interact to create the complex and as yet poorly identified or defined, overall sensory difficulties and medical symptoms, experienced by those with autism.

Such an undertaking could potentially give rise to a holistic approach to the medical treatment and understanding of autism. It may also lead to the recognition that autism may not be a set of disparate symptoms, so long they are called a spectrum, but instead, a series of intimately connected and inter-related cellular experiences. This is an understanding that genetic studies are leading toward.

Genetic understandings of Autism are significantly indicating that Autism has a bodily impact far greater than once believed. Several studies are pin pointing specific differences in the ways in which those both identified with genetic discrepancies  and autism absorb key vitamins and minerals, such as calcium, within their bodies at a cellular level (- these studies center around CACNA1A karyotype and chromosomal deletions).

Differences in the ability to absorb key vitamins and minerals create physical, immunological and neurological sensitivities.

As far as I understand this form of research, Autism cannot not be said to be just one aspect of a wider auto-immune system disease. Nor, when sensitivities are taken into account can it be seen as entirely neurological if the same factors that influence absorption and digestion are at work.

So if Autism were to be classified as a disease then it would have to be seen as disease that affects the entire body, not just the brain, at a very advanced level.

A level involving the minute key elements of physicality found within mitochondrial and genetic cells.

Trap-Estry

A frosted tapestry

Of invisible theft

Resonated

Through their bones

Engagingly at first,

Until

The lost skill of decoding

Silences

Returned to murmur

In their ears

Self interest began

to writhe up inside

Devouring good intension

On its way

Antagonism solidified

And fed

On their fear

Run,

Said their inner voices

Internally driven

With survivals

Base instinct for

Life

Struck between duty

Like statues of doubt

Caught

In their own

Incompleteness

They waited

Boys

Half grown men,

Awaiting

The nightmare

Of war.

 

Reasons to Question the Current Definitions and Understandings of Autism – (part one)

Autism Awareness

Autism is a condition that’s been described as both a Neurological Disorder and a Disease but what if it’s something else entirely? As the parent of a teenage son with Autism I believe that there several good reasons to question the way in which Autism is currently being defined and in turn understood by society.

Our current understandings of what Autism is and how it affects people are based on  the medical model of disability which defines disability as any condition arising from a significant level of  bodily dysfunction. Under this understanding neurological conditions such as autism, global and cognitive delays and pervasive developmental disorder not otherwise specified (PPDNOS) are increasingly being viewed as disabilities.

This places medical practitioners on the front lines of both defining and diagnosing Autism within our communities. As leaders in their field we expect doctors and psychologists to be able to detect and assess children for autism yet studies consistently reveal that both children and adults on the autism spectrum are being misdiagnosed.

Over the years there have been many books, studies and articles that all confirm that parents of children with Autism often have a significant level of awareness that their children are already responding to the world in different ways before seeking a medical diagnosis. Yet despite this, many parents describe that their attempts to have their concerns and observations regarding their children  taken seriously, are often met with a lack regard and professional understanding.

Over the years many parents have also described the roller-coaster ride of misdiagnosis that both they and  their children have endured due to inappropriate professional understandings  of their children. As a consequence many children with autism have initially had their early needs negated by the medical community.

To my mind the number of parents who have reported having had these experiences raises several as yet unanswered questions.

If doctors are our frontline in terms of defining and diagnosing Autism, why are so many of them still getting it wrong?

If Autism is purely a neurological condition then why are parents still being ignored when they seek medical help for their children?

What is it about the way Autism presents that medical professionals are missing?

If Autism is so hard to define in reality then how can it possibly be classified as having only one particular form of medical etiology? (i.e. neurological disorder)

What if Autism isn’t just a neurological condition?

What if it is part of  a whole body experience, which due to the compartmentalization of it’s many aspects, is being  ignored?

This Waking Life : Learning how to Swim in The Ocean of Autism

She wanted to hear him speak. To say the word“Mum” instead of “nnnnh”. She wanted to be more than just a sound in his mouth. She wanted to be a whole noun.  She wanted the nuance and the meaning of it to fill her ears and let her know that he at least knew who she was and that she did indeed mean something to him. She wanted to hear joy and laughter falling from his lips. Not the sounds of anger and frustration that too readily constituted his vocabulary.

She wanted so much for him, of him, from him. But most of all she simply wanted to know him. To feel his emotions and understand his thoughts. She wanted to run her hands through his mind. To untangle all the misplaced knots that held him so bound up inside himself. To reconnect all the disconnected synapses that short circuited his world and left her floundering in a sea of unknown origins and misunderstood currents. She wanted to swim in the tide of her son. To be a part of that which no moon held sway over. For he seemed to her to come in and out of himself on a whim.

She found no rhyme or reason for his demands, fears or peculiar likes. Everything about him to her was a compound mystery. She constantly felt he was a haunted house. The structure, the main body of which, was sound but that something un-named was adrift in the attic. Shaking the foundations of his life. Sending furniture like thoughts flying around his head, following their own kind of bizarre and intricately crafted, maze of other worldly logic.

She used to dream that one day he would simply look up at her and say one complete and glorious sentence. Bang, out of the blue. Just like that. But he never did. Even the act of smelling flowers was a mystery to him. He constantly put the flower under his chin. As if he really believed that his chin was the part of his body that could best enjoy the flowers fragrance rather than his nose.

She bowed her head as she watched him aimlessly pulling up fist fulls of grass, mechanically, one, after, the, other from the ground.  She found herself thinking again how truly lovely it would be to be able to walk into the garden of his mind. To hear his thoughts and to really know his fears and joys instead of always having to guess at them and hope that she was reading him right.

‘How much easier life would be if it were just like in the movies,’ she thought, as a tear traced its way down her face. She wished she could somehow plug into his universe. Then he could show her his world from the inside and she, in turn, could show him the world as she saw it. But life wasn’t a TV show and she knew no amount of wishing would make it so. The only actor in this play was her.

She presented to the world a jovial face and a warm smile, while inside, she felt every single dream that she had ever held for her son dying as the beginning of acceptance wound its way around her heart. He was different. He did have autism. She knew this first moment was always going to be hard. She hated herself for feeling as if her son were missing. She hated that there was no reason for his condition. She found herself staring resentfully at other mothers wanting nothing more than the assurances of health and safety  that their ‘normal’ children gave them. So many resentments in so little time. Their layers falling like blankets over her.

She was at a loss as to know how to explain, even to herself, why the world that she so dearly wanted to share with her son felt so totally gone. The passing down of her favourite child hood stories and the sharing of the animated version of ‘Kimba the White Lion’  seemed somehow to be more than far away.  Such simple things and yet….

She tried to blink back her tears of loss and frustration but they kept flowing. Following the crevices of worry already etched into her skin like the tattoos of belonging. Her mind kept asking, ‘how could life distort itself so?’ She felt like she’d been thrown in to the deep end of life and all she’d been able to do was tread water and try to stay afloat. She didn’t want to float. She didn’t want her son to live a life of floating. She didn’t want him to live a series of rote-learnt achievements, or role-played scenarios. She didn’t want him to only ever know his world through a set of computer- generated pictures velcroed to a carpeted board. That was no way to learn any thing. Let alone a life.

In that small moment of clarity, buried so deeply beneath all of the things that she didn’t want for her son, she found herself to be a mother. A mother who knew that she needed to thrash her arms and kick her legs.  A mother who knew that she needed to learn how to swim in the ocean of autism. That simply floating was never going to work. That her son too was afloat and he needed her to teach him how to swim.

Suddenly it didn’t matter that he couldn’t call her ‘mum’. It didn’t matter that he smelt flowers with his chin. It didn’t matter that their life together would be different. All that mattered was teaching him how to swim.

The Devil

So time bemoaned the devil his dues

While the devil himself,

Intrinsically bored with the commonality of crime,

And the constant lack of imagination that made up 99.9% of his job

Sat and begrudged humanity its inability to be creative.

Oh sure he’d had fun for a while

Especially with his invention of the internet,

Whereby for the first time in the eternity of his life,

He’d felt as if he’d truly created

A new

More interesting way

To show humanity it’s capacity  to deceive

Given the chance to communicate their ideas en-mass

Humanity had made him proud of the way their deceit and lies

Followed so swiftly on after simple truth

Had been dispensed with.

Yet, now 40 years on,

When all that had previously been un-thought,

Had been done

He sat wantonly flicking flies

And longed for the life of Time,

Who, although his  hands were always moving

Had at least been given the luxury of a mind

Free to think about more

Than just the next big soul catching thing.