Autism – We Share A Label – Not A Life

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Each and every person lives a life that is unique to them. Therefore, even though we may all experience life with Asperger’s / Autism, it does not automatically follow that we also experience every  aspect of  ‘life’ or Autism, or even ‘life with Autism,  in exactly the same ways.

One person’s lived experience, knowledge and truth, is exactly that.

One person’s.

We are all born into different circumstances.

We all have different experiences, learn different lessons and gleam different aspects of knowledge and truth, based on these experiences.

Sharing similar ways of interpreting or understanding the world around us, is not the same as ‘living the same life.’

We share a diagnostic label, not a life.

Please recognize and respect this fact and stop trying to ascribe the understandings, beliefs and personal preferences of one individual with Autism, to all individuals with Autism.

We are not mirror images of each other.

We are all different.

And we deserve to have our differences understood and treated with respect because our differences matter.

For example, the experiences of an adult female, diagnosed later in life, will be very different to those of an adult male, diagnosed early in life.

Whilst one may have grown up feeling ‘lost’, ‘alone’ or made to feel ashamed of her differences, the other may have grown up with all the benefits of self-understanding, self-awareness and being encouraged to take pride in his ‘different-ness’.

While each individual’s experience needs to be understood as being equally valid interpretations  and expressions of what it is to live an Autistic life, they also equally need to be understood as being validly different.

The act of preferencing one set of experiences over the other, leads to the negation of not just one narrative, but to the negation all narratives that do not fit neatly within the confines of that which becomes the preferred story of the‘ Autistic experience’.

Just to be clear on this, there is no correct way to experience Autism.

There are instead, many equally valid, equally real and equally genuine ways to experience Autism.

Yet some within our society continuously seek to preference and promote only one particular version of Autistic life.

We cannot and should not allow either ourselves or others, to fall into the trap of ‘negating’ the many difference to be found within in the Autistic experience, simply because it’s being presented to us under the guise of ‘creating Autism awareness.

All Autistic experiences are valid regardless of age, gender or socio-cultural and economic influences.

To believe that any one experience is any more important or worthwhile than another is to perpetuate both the myth that there is a ‘correct way’ to experience Autism, and that all ‘Autistic people are the same.’

We’re not.

We share a diagnostic label.

Not a life.

Autism – Absurdities and Atrocities

Artwork by JudasArt

Artwork by JudasArt

Voltaire once wrote: “ Those who can induce you to believe in absurdities, can induce you to commit atrocities.”

Nowhere is this statement more relevant than when looking at the many perceptions of the causes of Autism.

For example, consider the following two statements regarding Autism.

  • People with Autism experience the world differently due to the impacts of a disease process. This disease process can be cured. Therefore Autism is a condition that we, as a society, have a duty to either eradicate or overcome.

  • People with Autism experience the world differently due to neurological variances that are hard-wired within them at birth. Autism is not the result of a disease process which can be cured. Therefore Autism is an aspect of life that we, as a society, have a duty to seek to understand, respect and accommodate.

Which of the above statements do you believe to be the least absurd?

If you agree that the first statement is the least absurd and therefore, (in your eyes, most likely to be true), then chances are that you will do and try almost anything to either cure or rid yourself or your child of Autism.

The past 50 years have shown that attempts to cure “the autism” out of a child or an adult have had disastrous results.

Yet attempts to cure “the autism” out of a child or adult continue. Some involve relatively harmless and repetitive therapies that do appear to help assimilation.

However, some attempts involve subjecting children and adults with Autism to debilitating, humiliating and ultimately mentally and physically harmful forms of abuse.

Such as forcing persons with Autism to drink bleach, delivering painful punishments, such as kicking, punching, whipping or starvation, to persons with Autism for displaying undesirable behaviors or subjecting them to intense isolation and deprivation of liberty by locking them in rooms or cages.

All of which should be considered crimes against humanity and therefore seen as atrocities.

If you agree that the second statement  is the least absurd and therefore, ( in your eyes), the most likely to be true, then chances are that you will do and try everything you can to be better understand and accommodate for either your own or your child’s Autism.

Over the last 50 years the voices of those with Autism have continuously cried out for understanding and acceptance.

A key aspect of accepting the potential that children and adults with Autism process the world differently involves making the attempt to understand what those differences are, how they impact the individual with Autism and then accommodating for them respectfully.

Accepting and making accommodations for adults and children with Autism , whether that be providing them with safe, quiet places , pressure blankets, clothing without tags, or specialized educational programs, is both respectful and beneficial.

The practice of providing acceptance, respect and accommodation breaks no laws, perpetrates no crimes against humanity and therefore does not induce anyone to commit atrocities.

I prefer statement 2.

How about you?

P.S  I am aware that some may argue the possibility of a third statement in which Autism could be considered a curable disease whose sufferers should be treated with both consideration and respect whilst they are experiencing its disease effects. However, the propensity of those who support statement 1 toward the overall aim of ‘curing autism’ places many adults with Autism, who not only accept their differences but are increasingly proud of them, at odds with such beliefs.

I know you will probably think I’m wrong but I’d rather see men marching against violence towards women than in celebration of past wars.

"North Hampton is a Domestic violence fre...

I’d rather see men marching,

Against violence towards women,

Than see them celebrating,

Openly,

Their male comrades,

Who’ve either fought,

Or fallen,

During our nations,

Past wars.

Every year on Anzac Day,

We are reminded,

To always show our respect,

For those who have gone before us,

Who have given their lives,

For our benefits,

But what about those who are still falling before us?

Whose lives aren’t being given willingly,

For some greater noble cause,

But instead are being stolen,

Within our own domestic war?

Isn’t it time we  see fit to dedicate,

The same amount of national space,

To the true survivors,

Of the on-going war,

Against domestic violence?

A war that remains,

Too silently,

Unacknowledged,

A war whose victims are too often,

Left defenseless,

By the very same governments,

Who foster,

Such National pride,

For its soldiers,

While it lets its women die.

Least we forget,

The many women who have fallen,

To the senseless acts,

Committed within domestic violence.

 

Breaking Point. The crisis facing parents of Young Adults with Special Needs in Australia.

Young couple with baby.

 

 

For some parents of special needs children, living the dream of having a happy home and family life, was simply never, ever going to be an option.

Last year SBS aired an ‘Insight’ forum discussion with parents of young adults with special needs  who have relinquished their child’s care over to the State as a consequence of not receiving the support they as individuals, carers, parents and families required to adequately maintain the level of care needed at home.

 

Many of the parents and family members who took part in the discussion stated that they had been calling for ” in home help” and support for years.

 

All to no avail.

 

Even on the rare occasions when  children had qualified for respite care, families were then told that the waiting lists for those respite services were months even years long.

 

One mother described dedicating months of valuable time having her child’s and her families level of need assessed, only to be told at the end of the assessment process, that although her family did indeed qualify for assistance there was no longer any funding available to provide the hours of  care support they had indeed qualified for.

 

Throughout this discussion families reported that their pleas for help and support went routinely unanswered and that the lack of recognition over their genuine need for support led ultimately to a state of crisis.

 

Parents found that it was only once they’d hit that state of absolute crisis and inability to cope with the daily care regimes of their special needs children that any help was offered at all.

 

By then however, the parents and families concerned, had often reached too deep a level of desperation and exhaustion to turn back from the relinquishing process.

 

Many stated that, if  instead of having their pleas ignored or told there was no funding, they’d received the support and respite needs they’d asked for over the course of many years,  then perhaps they may have been able to provide in home care for a longer period of time.

 

Though as one mother pointed out, that as young children with special needs grown into young adults with special needs, there will always be significant issues that parents as full-time carers will have to confront in terms of their child’s on going care needs.

 

Often this means confronting issues of personal safety as aging parents are left to care for adult children whose level of physical strength far out weighs  their own.

 

Parents also state that as full-time carers they literally cannot work outside the home. They therefore usually have no income other than the Carers Pension.

 

This means that they also have no Superannuation.  

 

So as  parental full-time carers of special needs children age, they very  often have little to no additional financial resources to fall back on.

 

This means that they can’t  ‘pay’ for private carers to help them and that unless their children/young adults  qualify for government support via support agencies, the parents are  placed in a position in which they have no option but to relinquish their children/young adults into State care.

 

As one mother says in relation to the charge that as families and parents they are failing in their responsibilities to care for their children…….

 

Our Children are not the burden. It is the broken system that is the burden not our beautiful children. If we could have gotten the help and support we needed to function as full-time carers, we’d still be doing it, but we couldn’t get any help until we’d reached crisis point and by then , for us as a family, it was too late.”

 

Another father wept as he openly admitted that he could never go back to the chaos, stress and daily depression he’d dealt with for years, while trying to get the support his family needed in order to properly care for his son at home.

 

Many parents who had relinquished the daily care of their young adults to the State also expressed that there was a sense in which the alleviation of the stress of having to maintain their young adults daily care routine, once again allowed them to become  parents who were able to fully delight in their child/young adult.

 

For families relinquishing care does not equate to handing a young adult over to the State and never seeing them again, as is the common understanding of relinquishing care. Instead it equates to the certainty of knowing that their young adult is receiving the daily care that they need.  The care is quite simply being provided outside of the home environment by people who are being paid to do so. This way of providing care enables all family members to maintain  full contact.

 

Though the expectation is that parents of children with special needs should automatically take on the role of full-time parental carers as their children grow into young adults with special needs, the experiences of some of the parents within this discussion  indicated that it is time to begin to address and challenge the many issues and inconsistencies involved with such an expectation.

 

The honesty with which these parents gave voice to an issue that is fast becoming a silent epidemic, shrouded in shame and personal blame is simply amazing.

 

I for one hope that discussions such as these continue to be brought out into the public arena so that those outside the experience of caring daily for a young adult with special needs can gain a greater understanding of the complexity of the issues facing not just young adults with special needs but also their parents as carer’s and their  entire family members.

 

Anyone interested in watching  Insight’s Breaking Point click on the link below.

 

http://www.sbs.com.au/ondemand/video/2272818399/Insight-Breaking-Point-Sarah-on-respite