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.

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.

 

Old Child

My fate, it seems, was assigned to me at birth by the distinction of my gender. Though times are said to have changed, I wonder sometimes when I look at my daughter, her life, and her circumstances, whether or not any of it has truly changed at all. The designation of humanity based on what is or is not between one’s legs apparently continues.

Oh, I see proof of life’s entitlements being more evenly displayed and yet, the divide between what is and what should be, seems merely to have changed shape. It hasn’t gone away at all. Instead of going upward, it now grows out in a more controlled, yet somehow more disguised way. There seems to be more of an un-naturalness to the world than there ever was before. The puppets may have fewer visible strings but they are still dancing.

And then of course there’s Lilly. Named after a flower renowned for its purity. A symbol for the celebration of life most often found in graveyards. How terribly apt  some would say my granddaughters name has turned out to be. I wonder if she, like me, is sometimes simply acting her part. I have always acted as if I knew what I was doing, but I didn’t know a thing. Not a single thing. I’ve simply followed the rules of life laid out before me.

To the casual eye it would seem that  I have done all of the appropriate adult things at the  appropriate times but inside I am still a child. Less developed, less whole than those who purport  to have it all. To have understood the mysteries of life.

Sometimes I wonder if I am the only old child in the world. If other’s feel the way I do then they hide it exceedingly well. No one I know seems to question the way of things. Questions seem to be a child’s domain only. Adults are supposed to know the answers, aren’t they? I am still asking questions. I suspect I will always be asking them. I seem to know no other way of being in this life.

Still, all of my outward actions are the imitations of a well studied student. I don’t actually do any of the things I want to do. I am playing, always playing at being a grown up but never feeling like one. I wonder if Lilly feels the same way. If in her silent world, she plays all the invisible parts of herself out, over and over again.

I wonder if she ever doubts a thing. I know I doubt everything I do. I am sure that someone somewhere will one day look at me and know that I am not the image I portray myself to be. There are some parts of me that are so very adult, too adult it would seem. But it is my experience that adult hood is the death of the inner child. My inner child has not yet died. I keep her always inside of me.  

For all of Lilly’s idiosyncrasies  I admire that about her. No matter how locked in she may appear to be, her inner child is alive and her adulthood will never, ever truly arrive. No matter how hard we encourage its appearance.

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 are 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 its many aspects, is being  ignored?

 

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.

Time Spinning into Infinity

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Time sat himself on a ledge.

His fingers spinning minutes endlessly.

From the seconds of skin,

Flaking from his back.

Pricked and pinned like daisy wheels,

Minutes formed chains of hours,

Inter knotted and woven hours formed days,

Days that linked into others’ creating months,

Months which ran into years,

Decades on and  stolen.

Time no longer had any idea what he was actually doing,

For time was depressed,

Down hearted and bereft of all his joy.

The idea of creating the very measure of life itself.

No longer appealed to his sensibility.

In point of fact time had a great deal of that.

Too much in fact to suffer the inequities of his own makings.

Time understood his role in life the universe and all such things.

He knew every minute of life allotted,

Ultimately must at some point stop.

A life stopped when ever he stopped spinning.

Yet every time he stopped,

And a chain dropped,

There were always millions of other chains,

To dutifully keep spinning.

Deflated and tired time thought,

He probably should have taken the devils’ job,

Yes that would have held much more job satisfaction,

Secretly he wished that God had have made wasting time more of a sin,

Instead of greed

Avarice

Or lust,

Or any of the others.

For Time was tired of feeling the emptiness.

Of his own days,

While counting down the  hours of others.

Time was longing for a challenge.

Or at the very least a good cup of tea.