Rising to meet the challenges of understanding ourselves as Autistics in a non-autistic world.

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A major challenge that is presented  to many Autists in today’s society is choosing just where it is they wish to stand within the Autism spectrum.

I can proudly claim my right to be an Aspie and not see this as a disability, or  feel the need to change at all to fit into a non-aspergic world.

I can meet with others over the Internet, find a job where I don’t have to socialize with others, and indulge my favorite obsessions without messing anyone else’s life around.

At the other extreme, I can humbly acknowledge my crushing disability, and make extreme efforts to learn compensatory strategies that will help me become as “normal” as possible to fit in with everyone else.

Neither of these extremes suit me, and I’ve taken a middle position on the spectrum, which makes sense considering that I have a spectrum disorder!

I’m not sure whether or not having  Autism is something that I should bother to analyze rationally by seeking a legally framed story of cause and effect to explain it away, or whether it’s just one of the unavoidable hammer-blows of fate?

Or even, perhaps, as some see it, a challenge from the gods, designed to shift me into a different mode of functioning?

I guess in a lot of ways, the difficulty of rising to meet the challenges of understanding ourselves, is no different for us auties and Aspies than it is for the “normal ones” .

The normals still have the luxury (or obstacle?) of being able to hold on to their comforting views of the world, of themselves, of the purpose of life: whereas we are foreigners in a strange world in which we are reminded a hundred times a day that we are visitors to this strange place.

But, could that become a strength?

We may be able to think outside the square – let’s face it, we have little choice, since the square may now be closed to us. My need for literal and straight communication meant I had to be skeptical about anything anyone said to me, go back to first principles and seek truth with logic – an unpopular quest in a social milieu where the admission ticket consists of already knowing and accepting the consensus view, however illogical or untruthful it may be.

Can we, whom the gods have chosen to bless with this challenge, make any positive sense of being on the autism spectrum, and painfully carve out a new direction? Was it a divine intervention to force us to learn a very different way of being to the way of most on this planet? Is it all karma for actions we perpetrated in a past life? Can we learn from our dire experiences some new compassion for the suffering many?


I haven’t yet completed the long process of making sense of it all, and it will probably take me some years.

But I have found that it helps to keep myself open to the possibility that I needed to learn something, probably many things, from the many unpleasant things that happened over the years – bullying, taunts at school, abusive father, social alienation, constant sacking from jobs to name a few. I hope to gain insights that will make me a better person in a spiritual sense, perhaps that the direction I had been headed in during my recent incarnations was in need of change, and that I needed to take on board some painful humility about the common suffering of humanity which will help me become a more giving, forgiving and compassionate person in the end.

Why Are Children with Disabilities Still Being Bullied and Marginalized within Education?

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“Many disabled children fail to reach their full potential because they continue to be marginalized in schools, health and social care, according to new research funded by the Economic and Social Research Council (ESRC).

“We found that disabled children often experience discrimination, exclusion and even violence,” say Professor Dan Goodley and Dr Katherine Runswick-Cole, who implemented the study at the Manchester Metropolitan University. “The biggest barriers they meet are the attitudes of other people and widespread forms of institutional discrimination.”

“Disabled children are seldom allowed to play and act like other children because of concerns about their ‘leaky and unruly’ bodies. But our study shows that many children who don’t fit the narrow definition of ‘normal’ have untapped reserves of potential and high aspirations which can be fulfilled when their families receive effective support. There are also many amazing families who should be celebrated for the way they fight for their children.” continues Professor Goodley.

The aim of the Does Every Child Matter, post Blair? project was to find out what life is like for disabled children and young people in the context of policy changes set in motion by the New Labour Government after 1997. The Aiming High for Disabled Children policy agenda was intended to enable disabled children to be ‘healthy’, ‘stay safe’, ‘enjoy and achieve’, ‘make a positive contribution’ and ‘achieve economic well-being’.

The findings, which are based on a series of interviews with disabled children and their families, reveal numerous barriers to these goals, for example:

  • Disabled children are often perceived by educational and care professionals as “lacking” and as failing to fit in with the image of ‘normal’;
  • Families who do not match the norm are frequently excluded from friendships, education and work;
  • The support system is complicated and there are gaps in provision, particularly during the transition to adulthood;
  • Physical access and transport barriers to sport and leisure activities result in segregation, while participation in art and creative activities is limited;
  • Widespread discriminatory attitudes threaten to create a culture of bullying;
  • Families of children with life-limiting/threatening impairments often experience isolation and poverty

The researchers call for a change of attitude towards disability so that diversity is not only valued, but promoted. “There is an ‘epidemic’ of labelling children as disabled,” Professor Goodley and Dr Runswick-Cole warn. “Parents are repeatedly under pressure to talk about what their children can’t do in order to access services and support, but sometimes the label can obscure the individual. Families should be asked what support their child requires, not what is the ‘matter’ with him or her.”

Their report recommends that policy should prioritize enabling disabled children to break down barriers by supporting their participation in education, the arts, leisure and their communities and by meeting their communication requirements. “We need to re-think the culture of individualism and performance which pushes disabled children out” continue the researchers. “Pressures on schools are getting worse. We found a case where parents of non-disabled children petitioned to exclude a disabled child. What does this say about the meaning of education and community?”

The study found that bullying is often accepted as inevitable when disabled children are perceived as vulnerable. There were several layers of violence, from manhandling in school to psychological bullying, which often goes unnoticed by adults. Some children do however stand up to bullies and refuse to be limited by labels that are imposed upon them.

One young person insisted on attending Brownies meetings alone, despite health and safety rules that required her mother to accompany her. “Kids seem to enjoy challenging people’s expectations about their limitations,” the researchers commented.”

Originally sourced from http://www.esrc.ac.uk/news-and-events/press-releases/18605/disabled-children-do-matter.aspx

 

Autism and Reverse Discrimination – When Special Needs Equates to A Lack Of Consideration

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I went to collect my almost 17-year-old son from College today, only to find myself being dragged into an impromptu meeting with the head supervisor of his Special Needs Unit and the parent of another 19-year-old student.

So what crime had my son and the other student committed that had the Special Needs Unit in such a tizz?

Well, my son and his friend, had decided that they‘d had enough of being surrounded by people all day, so they’d cut their last class and were found sitting, talking quietly together outside the SNU on a bench.

Oh my god!!!!!!!!!!

What an apparently, absolutely awful and completely inappropriate thing for two young adults with Autism to choose to do!!!!!!!!

How dare they even try and act like “normal” young adults who are capable of making their own decisions regarding their state of mind and choose to take up a small piece of quiet time at the end of the day for themselves, instead of entering once again into a noisy class room.

For making this choice, both my son and his friend were not only hauled over the coals, but both had their parents snapped up in the College car park at pick up time and dragged into an overly serious meeting regarding the “consequences” of said actions”.

I’m sorry but  personally I felt embarrassed to be there, in that meeting, with those people, who were all condemning my son and his friend, for  making the very choices and taking the very actions that they undoubtedly see every other non-autistic student at that College  being able to make for themselves every day, without so much as receiving a second glance by their teachers, let alone suffering the indignity of a reprimand from their head supervisor in front of their parents.

My son chose to go to a main stream College for a reason and that reason did not include him being treated as if he should hold fewer personal rights than any of the other non-autistic students at that campus.

He chose to go to that College because he wanted to continue his education in a ‘normal’ environment and be viewed as a ‘normal’ student.

Yes he has Autism and so does his friend, but that shouldn’t automatically mean that they both forfeit the right to act autonomously occasionally, should it?

Neither left the College Campus.

Neither committed any acts of vandalism nor even tried to do anything particularly wrong.

Neither were being loud or in any way disrupting the learning experiences of  other students.

Neither were being inappropriate with each other in any way.

All they were doing was talking, quietly, on a bench that could be easily seen right outside the window of the SNU.

In comparison to some of the actions of the  ‘normal’  students on that campus  whom I’ve seen walking around swearing loudly, pushing into each other and even in one extreme case punching holes in the wall, my son and his friend were thoroughly tame, well-mannered and despite being without ‘teacher supervision’, were well-behaved.

Yet both my son and his friend found themselves being spoken too as if they were naughty 6 year olds instead of being 17 and 19 years old respectively.

Never once, despite all of the things I’ve seen on that campus, have I ever seen any other students there, being spoken too as if they were an errant child instead of a young adult, by the staff .

So I sat in that meeting, much like my son, cringing from the injustice of it all and realizing silently that speaking up, in this environment,  would simply never be an option at all.

I watched my son grow  paler and paler as the head of the Special Needs Unit grumbled on  and on at him and wondered why it was that this supposedly educated and well seasoned disability support worker could not see the enormous and incredibly negative impact that his words were having on my son.

My own  sense of hopeless sadness growing as the effects of the blows that each negative word, spoken to  my son, had on him.

Taking from him the strength of a head held high and reshaping  his body with deliberately hunched shoulders and a bowed head that averted his gaze from everyone in the room and instead remained stoically focused on burning holes into the floor, with his sad, angry eyes.

When the grumbling had finally come to an end I asked my son if he had anything that he’d like to say but his mouth had formed itself into a thin hard-line.

His words were once again locked inside of him.

He was going into shut down mode and all he could do was glare at the floor and shake his head.

Now, instead of looking forward to going to College tomorrow, as he normally would,  my son is terrified that he might once again make the mistake of thinking and acting for himself and perhaps risk being expelled because of it.

He is equally as terrified that when he goes to College tomorrow that his friend may no longer want to remain friends with him.

It seems the tirade of today has done nothing but reinforce the sense that there is some kind of invisible separation between the rights of my son and the rights of other students at the College.

The reactions of the staff  have done nothing but induce fear within my son.

So accordingly, I can’t help but wonder just where the equality is to be found in any of their dramatic over reactions?

I agree that ideally, my son and his friend should not have ditched their last class, but, what College student isn’t equally as guilty of occasionally doing the same thing, only without all the encumbrances of the embarrassment and fear, that my son has now experienced?

Doesn’t anyone there understand how amazing it is for my son to have a friend that he feels he can genuinely share his time with?

Why does it always seem, that the very measures that are put in place to help my son, too often end up hindering him?

That instead of giving  him a sense of empowerment, these measures end up robbing him of the right to direct his own personhood?

External Hearts

As parents of special needs children,

We  have to learn to stand back,

To let our lovely ones,

Learn to begin to climb their own walls.

Yet this is so much easier said,

Than it ever will be done.

For having a child with Autism,

Is like living a life,

With your heart,

Constantly beating,

Outside of the safety,

Of your chest.

We are always so emotionally exposed.

No matter how strong we think we are,

Just a few unkind words,

Uttered toward or about our child,

Can pierce us in all of our softest places,

In ways,

That others may never,

Understand.

Perhaps this is why every barb,

Whether intentional or otherwise,

Leaves it’s mark.

So please understand that it’s hard for us,

All of this stepping back,

And letting go,

For our children are not just,

 A part of us,

They are,

Our very,

Hearts.

 

Special Discrimination

Television content rating systems

My son no longer finds safety,

In your heavily sanctioned,

Familiarity,

He longs to break free of your rulings,

Designed as they are,

For small-minded children,

And not for young adults,

With thoughts and desires of their own,

Disabilities or no,

My son is a young man of clarity,

With hopes and goals,

And dreams of his own,

Why must you seek to contain him?

Isn’t it your job to help him to grow?

I give you his days in the trust,

That you will honor your obligations,

How is ignoring his voice when he speaks it,

Upholding your charter to promote,

Understanding, support and humanity?

When you stop becoming part of the solution,

You inevitably become part of the problem,

My son deserves better than being trapped,

In just another endless version,

Of educational  bureaucracy,

If he’s smart enough to know,

That the way you are treating him isn’t right,

Then he’s smart enough to grow,

And walk well beyond your light.

So please be advised that we will not be beholden,

To yours or anyone elses,

‘Well meaning’ forms,

Of  ‘special’ discrimination.

 

Parents of the Past

One thing that strikes me as being  so very wrong within the disability community is the overwhelming lack of recognition and respect afforded  to the parents of the past.

Over the past 4 decades inclusion has been achieved primarily through  the efforts of multitudes of parents, who have turned their hearts and  their minds, to the task of creating social and educational equity both for and on behalf of their children.

These brave parents of the past battled against levels of discrimination and prejudice that thankfully we can now only imagine.

They were the first to call for the recognition of their children’s basic human rights.

They were the first to confront the lack of knowledge, awareness and acceptance of their children within mainstream society.

They were the first to throw their shoulders against the walls of segregated education.

They were the first to rally around and raise awareness of the need for greater educational support, teacher aides  and social skills learning programs in schools.

The parents of the past were the ones who knocked down the very first walls.

They are the ones who  have  constructed the gateway to the  social and educational inclusion that so  many of us now gratefully walk our children through.

Over the last 4 decades they have been joined by successive waves of parents equally as committed to  taking on the challenge  of creating open hearts and minds.

Yet these parents of the past, to whom we owe so much, are rarely acknowledged or even mentioned within either the disability community or  society as a whole.

It’s time we paid homage to those who have gone before us.

Our generation did not begin the process of inclusion.

We were not there at the start of the fight.

We need to acknowledge that our current successes in gaining support and understanding for our children simply, would never have happened, without the courage, persistence and strength of the parents of the past.

So if you know an older parent of an adult with a disability, please do not disregard them as if they are irrelevant because they may be no longer in the fight…..

Instead, take the time to thank them for their contribution to the laying of the  path, you are now fortunate enough to be walking on.

 

The Techniques of Bias

Everything we read and take in has been shaped by a writers own bias.

This is true regardless of whether or not we are reading fiction, an article in a popular magazine or scholarly academic research.

As readers it’s up to us to spot the techniques of bias being applied and to recognize that our views are at times being carefully shaped by the language choices of authors.

For instance, if I were to present an academic article under the guise of being an “objective researcher”, I would still be choosing the language I use to frame certain elements within my article to either reflect, designate, or support both my research hypothesis and quite possibly subconsciously, my own unspoken opinion.

But….. research is meant to be objective…. Isn’t it?

These word tricks are not supposed to be part of the deal in academic papers,  are they?

Well the simple truth is, regardless of whether or its intentional not, writers of academic papers can be just as guilty of employing  the power of language in order  to sway their audiences toward their own perspectives, as any other writers are.

This became apparent to me two years ago when, whilst researching my thesis, I came across a book filled with academic studies on the state of  disability rights  within Australia.

For the most part this book held many outstanding and thought-provoking arguments.

However there was one chapter that stopped me  dead in my tracks.

A chapter concerning the bodily human rights of those with severe disabilities as presented through the linguistic lens of  the authors.

Sounds pretty straight forward right????

Most of us agree that disability or not, there are certain human rights that are, or at the very least should be, considered mandatory.

However this chapter championed the rights of those outside of the families of young adults with severe disabilities, ( basically strangers), to decide what’s best for the young adults concerned.

This point of view means essentially that the families who are providing  their young adults day-to-day care, will in certain instances  literallybe having the conditions under which they live and care for their teenagers, effectively dictated to them by those who hold potentially  little to no general awareness of the realities of their day-to-day life.

One of the issues being “studied” surrounded  the practice of sterilizing  teenage girls with severe disabilities without their express consent.

When phrased liked that, many of us would declare that no one should have the right to have these young women sterilized against their will.

Let alone their families.

But lets take a look at the language being used here.

Firstly, no where within the research was there any evidence provided that the young women discussed were either  cognitively able to give their consent or had indeed refused to do so.

Secondly, they failed to disclose that some of the severe cognitive disabilities experienced by  the young women they were championing  involved being not only entirely non-verbal but also entirely unaware  or scared of their own bodily functions.

Thirdly, the term used by the authors, that of sterilisation not only provided their readers with  a clinical, cold, medical and detached description of  an operation that is, under any other circumstances, and in any other section of the community,  considered a valid  personal right for a female to have her internal reproductive organs altered or removed for either health reasons or in extreme cases for reasons of convenience to prevent conception and menstruation.

Normally we’d call such an operation a hysterectomy.

I’m not sure about you but I can’t recall the last time a friend said to me that she was going in to hospital to be sterilized rather than saying  she was going in “to have hysterectomy”.

So as you can see,  the difference between the imagery that the two words conjure up are quiet  significantly distinct.

Sterilization = bad, enforced,  a violation of human rights.

Hysterectomy= good, personal health choice, a validation of human rights.

As you can see, the chapter concerned stated quiet plainly that the authors were against sterilization,  but not because it may not be the right decision for the person concerned, but rather solely because they felt that parent’s  should not have the right to choose sterilization on behalf of their severely disabled daughters.

Now if I had read this study without applying an analytical eye, if I’d have taken it purely on word value alone,  I would  have whole heartedly agreed with the authors, if not on their initial premise that at least on their argument.

Who wouldn’t?

But….. then they went one step further and used a very particular case study to hammer their message home.

Nothing wrong with that in and of itself as it is often a tactic academic writers apply. It’s done so often that it’s almost formulaic in many academic circles.

It’s pretty simple really, pick one specific case study that expediently allows you to apply all of your theories in one nice neat little package in order to demonstrate  the correctness of you conclusions (AKA- showing how right you are).

And if I didn’t know better, I probably would have bought the whole hypothesis, lock stock and barrel.

Except I did know better.

At least in this case.

It turned out that I personally knew the family being held up and crucified as the epitome of why parents should not be able to decide on a hysterectomy for their daughters.

Only in this instance, I knew that all of  the researchers suppositions were wrong and that the idea of sterilization for sterilization’s sake was the last thing that this family wished to engage in.

Instead, they wanted nothing but the best quality of life for their severely autistic, 6 foot tall and incredibly physically mobile 16-year-old daughter whose level of  cognitive acuity hovered somewhere around that of  a 2-year-old that they could possibly attain for her.

They had told me that she became so highly distressed by her periods that she regularly engaged in acts of self harm whenever she menstruated.

These acts included throwing herself at walls, bashing her head repeatedly against the toilet bowl at the sight of her own menstural blood, and becoming so hysterical that medication was required to calm her down.

Her family, though absolutely exhausted were also completely dedicated to ensuring that all those around their daughter upheld her human rights to be treated with care and dignity at all times.

For them, this included doing their best to alleviate what they considered to be a great  source of both  physical and psychological suffering which their daughter did not medically need to continue to be endure.

They were not asking for a hysterectomy for their daughter for their own convenience or because they believed she didn’t have the right to have children.

They were asking for a hysterectomy for their daughter based purely on her own destructive and distressed state when ever menstruation occurred.

And they had tried other avenues but their daughter had experienced significantly life threatening reactions to some of the  previous medications they had tried to prevent her menstruation.

These parents were stuck between a rock and a hard place and were fighting against the idea of having a stranger, with possibly no prior knowledge and very little understanding of  either their daughters condition or her reaction to her own menstruation, dictate to them what they could and could not do to alleviate their daughters suffering and discomfort.

Not such a straight forward proposition is it anymore? This idea that parents shouldn’t have the right to choose what’s best for their disabled daughters medically.

This case study, as abhorant as I found it to be,  allowed me to fully perceive the disparity that had occurred  between that which  had been academically studied and written about, and that which I knew to be  the true  lived reality for the family.

As a result of this I began to more fully understand just how carefully  my opinions on the entire issue had been shaped by the unique mix of language and specific logic applied by the authors.

The other very clear point this laid out for me was that these authors had an audience who would undoubtedly follow in their potentially logical,  though ignorantly biased, understandings of the complexities involved for such families.

It also struck me as significant that the family concerned in this instance, had no one to speak for them within the academic field.

They were given no voice and no right of reply within the context of either the study or the assertions made about them by its authors.

They weren’t even aware that their personal struggle to choose the best outcome for their daughter had been used in such a publicly disparaging way against them.

I view this situation as not just biased and unfair, but also as being in itself, a violation of the families basic human rights to be treated with honesty, integrity and dignity.

I feel that the researcher’s involved fell down horribly in their responsibility to treat both the issues at hand and the family discussed with the honesty and respect they deserved.

What’s your view on this topic?