“ I looked at the world and the world looked back at me for 50 years. Then I was diagnosed with Asperger’s Syndrome and suddenly everything changed”.

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“I looked at the world and the world looked at me for 50 years. Then I was diagnosed with Asperger’s. Getting the diagnosis had a profound effect. Over the following weeks, a thousand shards seemed to rush together to form a single mirror. I could see myself at last. There were no distortions, no ‘missing pieces’. So I could stop searching for them.

If you’ve ever beaten yourself up about your ‘failings’ you might begin to comprehend the sense of relief. After a lifetime seeking that elusive ease that other people seem born with, I suddenly realized that they were born with it, and I was not.

I’d often watch people in an attempt to work out how they’d go from being strangers to being close. I remember seeing two people sitting on a bus. He glanced at her, then reached up and pushed a strand of hair off her face. She looked at him and smiled. How does that happen I’d wonder.

I’m told that when younger, my inability to read signals left a small succession of men feeling rebuffed and vaguely puzzled. I’m flattered and bemused. I hope they were good-looking.

Some years ago I was in a relationship. He had to practically club me over the head and drag me into the cave before I realised he was interested. To anyone else, that might have been a warning. But people with autism tend to trust what we are told because we don’t speak body language. I spent our first year together discovering how manipulative he was and the next three looking for an exit strategy.

1098119_10151923638169903_2089384885_nThere is a vast gulf between being alone sometimes and being alone in the bubble of aloneness experienced by many people with autism. I go out every day, to be among people, but do not try to engage with them. I sit with my book or crossword, conscious that I am being part of society. If someone took a photo of me in the coffee bar, you wouldn’t spot the Aspie. And I might not be the only one.

Social isolation is not just about having mates to socialize with. It’s true that if I go to the cinema I go alone. I eat alone. I go on holiday alone and when I get home, everything is exactly how I left it. But it is more profound than that. If I am ill, no-one will bring soup or take me to the hospital. At the end of a working day, there is no-one to talk to about the stresses or the highs. If I am anxious, I stay anxious. I have no friends I can call to cheer me up. I know nobody with a car. If I want to buy something bulky, I have to pay to have it delivered. Join a club? Been there, done that, learned new skills, went home.

I know all the things I ought to do and how to access information. I don’t require kindly advice – I simply can’t do it because I work full-time and just getting through the day is too tiring.

I have a parent and an Aspie sister and we form a good support group. We have other siblings, without Asperger’s. They are happy with their families, however I wish they would make some attempt to understand autism. Not for myself, but because they have children and their children are beginning to have children.

I have read books by other Aspies and trawled the internet forums. There is a lot of emphasis on young people with autism. I was never a young person with autism, as I had no idea I had it. I was a young person with problems. I am now a middle-aged woman learning for the first time to recognize my problems as Aspie problems and look for interventions. I have the problems, but there don’t seem to be any interventions available to people of my age.

So I review my life alone. No change there. There are problems I haven’t been able to rectify, but I know how to be kind to myself. When I get home, electric lights go off and I light candles. I burn oils because they calm me. I am learning how to slow down the chatter that runs through my head and I am looking for the key to a full night of sleep.  I might never be at ease with you, but I am more at ease with myself.

I have plans that are based on who I am, rather than who I think I ought to be. I spent my first half century trying to fit in and now I have stopped. If anyone questions my oddness, I tell them it’s because I’m odd.”

This amazing story which so aptly reflects the maze of confusing emotions and experiences  that so many women, who are diagnosed later in life  with AS describe encountering along the rocky path toward self-awareness, understanding and acceptance , was written by “Manda” .

 

 

Autism from an adults perspective – “It’s a horrible feeling of vulnerability and helplessness to know that the non-autistic world sees you as seriously impaired”.

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Bitterness is a trap Aspies and Auties can easily fall into; it’s entirely understandable, but it doesn’t help the healing process. There is something that can be quite embittering for many of us on the autism spectrum, something appallingly undermining. For a start, there’s the stigma, the social taboo, the fact that to some people, you are now an embarrassment, and some of them show it.

On the inside, it’s a horrible feeling of vulnerability and helplessness to know that the non-autistic world sees you as seriously impaired, and there are a million and one ways it will try to make you feel as if you are not a fully functioning human being. At best, you know you’ll never be quite “normal”; and in a herd-mentality society that subsists on the fragility of social acceptance, this knowledge can a times indeed be a bitter pill to swallow.

This feeling of being vulnerable, confused and a bit lost, still happens to me every day, even  after more than forty years of dealing with it.

I was not diagnosed as having Asperger’s syndrome until adulthood, but well before that I did not produce appropriate emotional responses on meeting other humans, and that led to a disastrous cascade effect – I lost contact, became withdrawn, and fell off the cumulative ladder of social-emotional learning.

To this day, I have significant degree of impairment with social-emotional skills. I can’t be sure I am reading people’s signals accurately. Indeed, often I know I haven’t, even before they become guarded and then pissed off – I’m not at all sure I fully understand what they are saying, especially if they are “being polite” or trying to imply something rather than saying it straight out. I need direct, literal communication: and on this cagey, dodgy planet I seldom get it, which means that much of the time I can’t be sure that I did in fact “get it”.

I often have to ask for clarification, which can lead people to think that I am a “please explain” duh-brain; it also leads to conflict because they think I’m just being awkward in not accepting what they think they have said, or not coming back with what they deem the appropriate emotional response.

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At such times, my underlying high IQ is not obvious to the casual observer. This can all add up to a very embittering feeling of insecurity – the feeling that I am condemned to a position of permanent and humiliating disadvantage, of seeming to be a bit of an idiot.

Bitterness can set in when living with autism or Asperger’s syndrome. But is it possible to leave the bitterness behind, to work through it to a sunnier place? I hope so. I’m still working on mine: here are some ideas I’ve found helpful.

The first point is one that actually elongates the process rather than shortening it. I have often been told that I need to forgive, to let go, to move on. That is true: but it is utterly pointless trying to do that unless we have first fully, honestly and laboriously worked through all the negative feelings, all the grief we have about not fitting into this world. It is vital and indispensable that anyone who is on the autism spectrum has the absolute right to go through our own grieving process in our own time, and let go of it all only when we are REALLY ready to do so.

Forgiveness is not an instantaneous action, a simple stroke of volition. It is a difficult emotional process, and it simply doesn’t work if we try to jump stages. It is easy to say we must forgive, let it go. Yet we cannot forgive until we have let the anger up to the surface and expressed it. And don’t ask whether or not your feelings are reasonable – feelings are never reasonable. They are not meant to be reasonable: feelings are feelings, not rational ideas. Don’t get the two confused, they are very different phenomena.

Thus, to get to the stage of being able to let go of our resentments, we must work through all the powerful stages of grieving – the denial, the depression and hopelessness, the slowly mobilizing anger, the growing reconciliation to our new, impaired daily reality, the radical reassessment of our goals, life experiences and interpretations. It takes time, often a lot of time – and we need to allow ourselves to do it in our own impaired time, not on a schedule suggested by well-meaning (or otherwise) helpers.

At all times, I try to keep one guiding principle in mind and that is that the fact that I am an Aspie does not make me less of a human being.

Nor does it detract from my indelible human rights – including above all the right to make a positive contribution to the betterment of the human condition in whatever ways I can.

I may be different but I’m still a human being and just like every other human being I will have my good days and my bad days and my own unique ways of processing past hurts.

Asperger’s Syndrome in Women: A Different Set of Challenges?….. By Chatherine Faherty.

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“According to Tony Attwood and other professionals in the field, women with high functioning autism and Asperger’s Syndrome may be an under-diagnosed population.  If this is true, some of the reasons may be attributed to gender differences.

Are there behaviors that are seen in girls with Asperger’s, but not in boys, that we haven’t yet identified as part of the profile… or certain gender related behavior that might fool us into ruling out the diagnosis?

What about the “pretend play” that has been observed in many young girls at our center, which on the surface appears to be quite creative and imaginative?

There seem to be many girls (on the spectrum) who are enamored with princesses, fantasy kingdoms, unicorns, and animals­­.

How many diagnosticians observe these interests and skills as imagination, and rule out a diagnosis based on these behaviors?

Might this interest in imaginary kingdoms and talking animals be more common among girls than boys, yet still exist alongside other autistic/AS traits?

And what about one typical response to confusion or frustration­­––hitting or other such outward expressions of frustration?

Does this type of acting out occur more often in boys with autism than in girls? Is confusion or frustration simply easier to identify in boys than girls because we already look for it?

Among the general population, it is commonly thought that boys do “act out” more than girls.  (You sometimes hear teachers complain there are too many boys in his or her class, and its impact on the class’ personality!) Is it easier to identify boys as having autism because these behaviors are more obvious, than girls who may experience inward or passive signs of aggression?

Professionals whose task it is to diagnose individuals with autism or Asperger’s need to learn more about the full range of qualities and personality differences unique to girls and women on the spectrum.

And what about the girls’ and women’s route to self-understanding?

Indeed, several women I have worked with who have Asperger’s have talked about the unique challenges they experience because they constitute a “minority” within this special group of society.

I believe that in order to gain self understanding, each person with – or without – autism needs to see his or her own reflection in the world. I call this ‘seeing one’s place.’

For people with autism or AS, who already are challenged in this area, it becomes imperative that they meet, listen to, talk with, read about, and learn from others with autism. What happens as a result of this coming together is that they are able to see their ‘reflection’ and better understand their own unique styles of thinking and being.

Women with autism, although benefiting greatly from getting to know other people with autism, often find that they might be the only woman (or one of a very few women) in the group.

When I asked the women we see at our center if they would be interested in being in a women’s group, I had hoped that the group could fill a gap in our services. I also hoped that I would learn more about what it means to be a woman with autism. The more I meet with these women, the more I realize we have far to go in understanding the unique challenges that women with autism or Asperger’s face.

One woman explained that, from her perspective there is subtle interaction between two sets of issues;

“Problems related to the [autism] spectrum are combined with problems of society’s expectations of women.  How one looks, what one wears, how one is supposed to relate socially, that a woman is supposed to have a natural empathy towards others, expectations about dating and marriage…”

 Women are affected by autism in the same ways as are their male counterparts; however, they are doubly challenged by the added assumptions that society places on the female gender.

At the risk of stereotyping, any man who is a rational thinker, and not emotionally in tune with others, is often thought of as having “typical male behavior” (think of the TV show “Tool Time”). A woman exhibiting these same personality traits might be regarded as odd, annoying, cold, or depending on the situation, even mean-spirited. Autism, with its particular effects on personality, causes one to appear more rational and less emotionally responsive or empathetic to others. Women with autism note that these expectations  indeed may weigh more heavily on them, just because they are women.

At the first meeting, the group members requested specific topics for discussion, topics that they encounter in daily life or ones which they are currently pondering.

These topics included issues that are relevant to women at large such as personal safety; dating and sex; or being taken advantage of when your car needs repair.  Other issues they raised were felt by group members to possibly be more significant for women with autism, but common to all––being pressured to conform by getting married; to “act like a lady”; and issues about one’s appearance––to have to “look a certain way”.

However, there were topics that all agree are a direct result of being a woman with autism, such as common behavioral and social expectations by the society at large.  At the top of the list were the expectations of being sensitive to others and displaying empathy.

Women with autism have expressed that they feel that more is expected from them than from their male counterparts, simply because of their gender.

Members of the group felt these expectations to be sensitive and empathetic, typically attributed to women, are unfair and difficult to meet.  Discussion centered on how these behaviors require skills like the ability to accurately read and respond to body language, along with the inherent desire to “take care of others, emotionally.” Interestingly, after discussing these issues, the first requested topic to explore was reading body language and how to tell if someone is trying to take advantage of you.

The topic that generated the biggest emotional response from the group was the personal experience of feeling like one was “being treated like a child”.

Parents, in general, are often more protective of their daughters than their sons.

Daughters with autism talked about feeling overly protected into womanhood.

In many cases, this is needed, although without understanding the parent’s perspective, the adult daughter can feel unfairly babied. Some women talked about the resentment they felt toward people, who for many years had been trying to teach them “socially appropriate” ways of acting.  “Enough already!” was a common response.

The desire to be respected as an individual, and as a woman, was voiced clearly and strongly. Although this desire is probably equally shared among grown men with autism, the women voiced these desires clearly, with deep emotion and passion, when talking with other women.”

By Catherine Faherty

Autism Asperger’s Digest | July/August 2002

This post originated from http://autismdigest.com/aspergers-syndrome-in-women/

 

Don’t Box Me In

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We need to share more love in the world.

Not hate.

“I am tired of people continually putting others into boxes based on made up ideas of how they should be or what they should do.

We are all people, on different journeys with different values, ideas, different interests, sexuality, abilities/disabilities and neurology.

We are diverse.

And we are all worthy of love and acceptance.

I’m tired of conditional love and acceptance.

Let’s celebrate our differences and move towards acceptance of each other regardless of our differences.

Unconditional love all the way!

♥ stuff the boxes that others try to place us in!”

This post was written by a lovely woman whose had being judged by others up to ears. So open your hearts and listen to what it is she has to say. She’d like nothing more than for her message to go viral so please feel free to reblog and share this in as many places and as many times as you can. Thank you K for you wonder full words.

  • Gomer (evangelhome.wordpress.com)

 

Child Bride

The Darkness

The child of two lost souls,

Still searching for an anchor,

Chosen as much for her vulnerability,

As her beauty,

She became fruit for his harvest,

Sun kissed,

Pastel dress,

Willowy and wholesome,

Yet bathed in the sin,

Of errant beliefs,

Her gifts transformed her,

Into his sacrificial lamb,

Patiently he’d watched her flesh grow,

As he’d secretly inhaled her youth,

Until this day,

When he’d make manifest,

His ancient  alchemical way,

Of transforming a girl child,

Into a physical gift.

Wrapped in the white,

Concealment ,

Of silken ribbons,

Behold,

The prophets new child bride.

Lost and alone,

Afraid and betrayed,

Encircled by those,

Who chose to obey,

Too blindly,

The well crafted lines,

Designed to conceal,

This,

His most contemptuous,

Theft.

Life mistaken for death,

And endless vulnerability.

On The Learning Curve

Original Art Work by M.Slater

I love my 12 year old daughter. She’s the most unique and fully observant  child I’ve ever  known,   and even though our lives together can occasionally seem like a string  of mismatched misunderstandings,  we none the less have an absolute ball trying to decipher the social world around us.

Yesterday we were discussing  some issues she’d been experiencing  “fitting in” at school.

We’d whittled down the broader issues of my daughter “feeling  out of place” and  her  overwhelming sensation that certain girls around her were “ghosts making annoying back ground noise with their talk”,  to one significant problem.

She never felt as if she understood whether the girls around her were being nice or, as she put it, ” being  sincerely nicely mean”.

So as much as possible, to avoid her own sense of confusion over this,  she’d begun to  try and block them out.  Hence her ghost girls analogy.

Original Art Work by M. Slater

Now the inability to understand the intentions behind other people’s comments is something  that  I also struggle with from time to time . So I told her to try a trick that I use when all else fails.

 If someone says something that I can’t make sense of or simply can’t interpret, I’ll  to ask them if they can explain to me, exactly what it is they meant by their comment.

After giving her this advice my daughter  replied,

‘Well mum, no offense and all but, I don’t think I want to do that then.’

Why?

‘ I just…..I don’t want people to think that spending time with me is “too much like hard work.”

‘Why on earth would you think that people would think that?’

‘Because that’s what ‘Sophie’s mother says about you’.

OK. So maybe my strategies for deciphering this world  do sometimes leave a lot to be desired.

None the less , I love the way that  my daughter ‘s  words and actions  gently remind me that, even though I’m her mother, I am still working my way along the same learning curve that she is. And that’s OK.

What do your children teach you?

 

A mother warrior is…

A Mother who hears there is no hope for her child and,
Instead of retreating and mourning,
Breaks down walls,
Weaves her way through obstacles,
Follows her intuition,
Even when people tell her she is crazy.
She is a mother who believes in hope.
A mother who believes in miracles and,
Is able to carry on with strength and determination,
Even when surrounded by those who doubt her,
And offer her no support.
She is a mother who never gives up,
Even when she keeps hitting dead ends.
These are the women who will continue to open the door,
So future generations of children won’t have to suffer.
These are the mothers with hearts of gold
And shields of nothing more,
Than flesh and bone.
These are the parents who fight,
Giants on daily basis,
And each in their own way,
Win new ground every day.

They are seekers of change.

Seekers of truth.

These are the warrior mothers,

I walk beside proudly,

And whose numbers I hope,
Will one day over flow.

The Medicalisation of Difference, Homosexuality, Women, Pregnancy and Birth

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Kate Cregan (2006), in her work “Mapping The Human Body”  sites the example of the non existence of  homosexuality until it was labelled and defined by the medical fraternity in the late nineteenth century as a clear and present example of the  very capacity of the medical system to both construct label and define it’s meaning.

 

“Homosexuality became known in a medico-legal way within particular knowledge systems that there after have controlled its meaning” (Cregan, 2006 :46). Deborah Lupton (2003) in her work  ‘ Medicine as Culture’ also draws attention to the way in which the medical establishments definitional power is at play in the twenty-first century siting the medical professions latest assertion that genetics may be able to predict illness as  evidence that“ the knowledge base of scientific medicine has encroached even further into defining the limits of normality and the proper functioning and deportment of the human body” (Lupton, 2003:1).

 

According to Lupton (2003) this desire for the control and regulation of the human body is particularly pertinent to pregnant women enmeshed within  a health system that  seeks “increasing  control over women’s bodies” through  medicalization and surveillance (Lupton,2003:158).

 

The regulational and  definitional power with which medical institutions control and regulate the female body can be seen clearly in Karen Lanes work on pregnant women.   Siting Ulrich Beck’s analysis of risk in the modern world, Lane shows how the very notion of ’risk’ has now, through a medically induced process, become synonymous with the biological acts of both pregnancy and of giving birth, so much so than women who choose not to give birth in a hospital setting are often accused of not caring for or risking the health of their unborn babies ( Lane, date, page).

 

The irony that  for hundreds of years giving birth has been regarded as a ‘natural’ biological act that has now been medicalized beyond the point of individual choice for the women concerned, indicates the immense capacity of  medicalised perceptions to invade and persuade social thought and individual behaviour (Lupton,2003: 159). As Norbert Elias noted  “this kind of dictum ignores the wide variability  of bodily development and leads to  the patholigisation of what are essentially natural bodily functions” ( Cregan, 2006: 30).

 

The control mechanisms set in place within the debate over the safety of homebirths are themselves defined by the medical establishment that provides the very power base with which it seeks to regulate and control the human body and clearly earmarks how in  “post modern embodiment, we have internalized the control mechanisms that are set in place by various authorities of delimitation institutionally legitimated epistemologies”  (Cregan, 2006: 59).

 

The fact that pregnant women even feel the need to seek medical permission to engage in a home birth  provides proof of just how medically regulated and controlled such biologically natural processes have become and reinforces Foucault’s initial observation that such definitional capacity “results in a more subtle and diffuse power by which we internalize regimes of control and learn to self-regulate our selves through the regulation of the body” ( Cregan, 2006 :41).

 

 

What’s the problem with Piggy Backing? A Very Specific Example.

 

In the course of my work I have spoken  with many parents  of disabled children. The issues and problems they face are enormous.  However the most common concern that parents of school age children raise involves  the lack of  recognition for funding and support their children receive within the education system.

Many parents are aware of the problems with funding but few parents are aware of the practice of “Piggy Backing”. Those that  are often remain unaware of the broader problems that this practice has created in terms of quantifying the current funding process.  

For me the health and safety issues alone associated with placing highly vulnerable or severely disabled children alongside children with ‘behavioural issues’ is enough to raise several red flags. These red flags also include wider moral and ethical issues regarding educational equity and civil and human rights violations.  

As an example,  when speaking with the parent of a teenager with severe ADHD and Anger Management Issues ,the parent explained to me that her son  had never qualified for funding or aide time due to his high IQ. Yet despite his high IQ her son was failing in several classes at high school. When asked why  she thought that might be the parent reported that her son had a strong tendency toward violent outbursts and that he was frequently being expelled because of this. She also commented that while in school her son found it extremely hard to concentrate for more than 5 minutes at a time and that often his teachers reported that his behaviour (up-ending desks and chairs, being verbally abusive to staff and students, threatening acts of bodily harm to self and others) disrupted the class.

 Despite all of these issues her son was still in school. I asked the parent how she’d managed to keep her son in school. She then revealed that her son, despite not qualifying for funding, did indeed have a teacher’s aide who worked with him daily within the school environment.   The individual support he received came via a teacher’s aide initially employed to work with a teenager with Down Syndrome whose level of funding allowed for a full time, one on one aide, for the entirety of the school day.

The parent then described how her son had been accessing the support of the teenager with Down Syndrome’s aide for the last 6 years.  This “Piggy Backing” onto another child’s aide began in grade 5 when despite placing her son on Ritilan as requested by the school, his aggressive behaviours continued. His teacher at the time, out of desperation, teamed her son up with the child with Down Syndrome and his aide as that child was often excused from being in the class room in order to take part in one on one activities with the aide elsewhere while the rest of the class worked on.  The parent reported that this worked for her son and that all concerned were much happier with his being able to leave the classroom.

It worked so well that the following year in grade 6 the parent specifically requested that her son be placed in the same class as the young fellow with Down’s Syndrome. The school happily obliged and the process of “Piggy Backing” continued.

When it came time to choose a high school for her son the parent admitted to asking the aide which high school the lad with Down Syndrome would be going too and ensured that her son enrolled in the same one. The parent also then had a meeting with the Principal at the new high school  to specifically request, once again, that her son be placed in the same classes as the “boy with the aide”. This request was honoured and the “Piggy Backing” continued unabated for the next 4 years,  during which time  the teenager with ADHD had been expelled from school for violent and aggressive behaviour no less than 6 times.

I asked the parent how the young lad with Down Syndrome reacted to her son when he became violent. The parent admitted that she had no idea as this had never been viewed as an issue of concern to her and she stated that the lad with Down Syndrome “didn’t seem able to learn or do much of anything so I don’t suppose it matters much to him”. I asked her if she’d ever met the other boy’s mother or spoken to her.  The answer was no followed quickly by the statement that , “Well really it’s nothing to do with her. It’s organised by the school.”

At this point I’d like to state that from all accounts, in speaking with this mum, she is a very loving and caring parent who is facing the challenges of raising a very demanding son  and trying as best she can to see that her son receives access to help and support within the school system.  In short she is playing the hand she’s been dealt to the best of her ability and few of us could criticise her for that. The fact however that the help and support her son receives may be coming at the expense of another child within an institutionally and systematically endorsed setting does however worry me.

Why should it be that in order for an aggressive and violent teenager with ADHD to receive support   within school, an otherwise vulnerable and placid teenager with Down Syndrome  has to  be placed within the line of fire of  such behaviours? This disturbs me greatly and I can’t help but wonder if the other mother knows that this is her son’s schooling experience?

One would hope that at some point during her sons IEP meetings that the situation of sharing an aide with an overly aggressive student might have been discussed but who knows? And who knows what behaviours and thoughts that teenager with Down Syndrome may have taken home with him? Was he distressed by his exposure to the other boy’s aggressive and violent behaviour? Did he and his family experience nights where the he could not settle as the result of that exposure? Did his vocabulary of swear words increase?  Did anyone check to see if the lad with Down Syndrome had been hurt in anyway during any of the outbursts?  Was the boy’s mother ever even informed of the arrangement that her son was being exposed to for past the 6 years?

 

The fact that parent of the teenager with ADHD has never once in 6 years spoken to or met the other boys mother bothers me because it means that in all that time there has never once been a consultative meeting process occur in which the needs of both boys together have been discussed in relation to the teaching strategies applied  to both boys in tandem within the school.

It indicates to me that there is a good chance that the other mother has never been informed of the situation nor given the opportunity as an advocate for her own child to voice her opinion regarding the situation.

This matter also violates several human rights issues. The key ones being the right to personal safety, to being fully informed of any and all institutional practices that impact on your child and the right to expect the invocation of fully informed consent before any such institutional practices are agreed to.

 Disability rights should include the rights of all disabled adults and children and their families to be safe, to be supported, to be informed and to have the issue of their consent taken more fully into account. I’m not sure the practice of “Piggy Backing” under such circumstances can be seen to uphold any of those rights for any of the people concerned.  Yet this is what is taking place within our schools and being sanctioned by our wider education system. 

Though this is a very specific example and there may be cases in which the format of “Piggy Backing” may convincingly be argued to have worked, the point still remains that “Piggy Backing” is a practice that has the capacity to expose the most vulnerable in our society to the most aggressive and all within a educationally sanctioned setting. 

Shouldn’t we at the very least be asking why this is being allowed to happen?