Parents of children with Autism beware of Facebook Forums…… They are fast becoming the places of choice for ‘professionals’ trolling for business.

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Recently, whilst participating in a Facebook forum meant to have been created for parents, by parents, I had the unfortunate experience of engaging with someone whose method of response I found to be nothing short of well-articulated academic bullying.

So what’s so unusual about that you might ask?

Well I guess, in and of itself this person’s style of academic bullying may not be that unusual.

Nor if it were occurring in any other forum, necessarily a big deal.

But in a forum that’s meant to provide a safe place for parents of children with Autism to openly exchange information,  discuss issues  and share opinions, I found  this persons method of response both confronting and out-of-place.

One of the aspects of this person’s response method, which I found  particularly disturbing, was that although I am reasonably intelligent,  this person continually addressed me as if I, as both a parent and a mother, held no intellectual capacity what so ever.

I found this to be a highly unusual response approach. Especially considering that these responses were meant to have been coming from another parent.

I know that I, and many others, regardless of our academic or professional status’, engage in parent forums first and for most as parents.

As such, we speak from our hearts and not as untouchable academics with text-book answers for everything (no matter how out of date those text-books may be).

Which is why I find that on the whole, most parents in these forums  do as I do whenever they are confronted by an issue that they either do not agree with or do not understand.

They withhold criticism and accept that whatever the topic or the opinions expressed, (no matter how much you might disagree with them),  they are still the valid views and experiences of another parent struggling to find peace within whatever given situation they are in.

As such they are treated with respect and dignity.

The responses therefore are usually ones of compassion; sprinkled with suggestions that other parents think might help.

So to come up against a person whose chosen response method was adversarial, showing little to no genuine degree of personal understanding, was somewhat unusual.

Feeling that something wasn’t quite right, I decided to scroll through the forum and read this person’s responses to other posts.

What I found was  that not only did this  person regularly offer the same form of detached academic response over and over again, but that some of the parents within the forum seemed to be looking up to this person and taking their words and opinions, almost  as gospel.

Another thing that struck me as being particularly odd was the fact, that in all of said person’s responses I’d read, they at no time made mention of, or even alluded too,  actually having a child on the autism spectrum.

The most common phrases they used were “parents need to understand that autism isn’t about them” and “parents should put their child first”, “parents need to listen to fact”.

There were no, ‘as parents we need too,’ statements to be found only  the detached and somewhat authoritative ‘parents should’ variety of commandments being issued forth.

This all seemed to sound just a little too strikingly familiar to me, as it smacked of the Doctor/ God complex that I’d  encountered far too many times  over the years.

This piqued my interest  so I decided to check this person’s Facebook profile and guess what I found?

The person concerned is indeed a practicing psychologist and their Facebook page both promotes their clinic services and provides full contact details on how to make appointments with them.

And guess what area of practice they claim to specialize in?

Autism.

Now call me naive, but just when exactly did parent forums become the feeding grounds for professionals trolling for new clients?

No wonder I found this persons remarks and cold academic way of dealing with the legitimate concerns and situations of real parents to be so disturbingly detached.

It’s because they were never responding as a parent, only ever as a professional.

So the next time you find yourself in a forum where something or someone just doesn’t feel right, listen to your gut instincts and check it out.

You may just be as surprised as I was by what you find.

 

Those who have the pivilege to know…….. AS and PDA….Is it a comfortable fit?

Seeking the opinions and advice of others regarding Pathological Demand Avoidance as it relates to Asperger’s Syndrome has shown me that there is a world of debate out there regarding the  relevance of seeking to apply yet another label to the behaviors of those already defined as being on the Autism Spectrum.

As the mother of a child who’s currently going through what can only be described as a very challenging time without the benefits or understandings that an accurate label/explanation can bring, I’m going to have to put my hand up right now and admit that I’m at the point where I’ll take whatever accurate labels/explanations I can get.

But…..I will only accept those labels and explanations if they both make sense and can accurately explain my daughter’s behavioral needs.

I won’t ignore the wisdom and understandings being offered to me on this subject  by those  living with Asperger’s Syndrome, who argue that PDA  like behavior is, and always has been, a facet of their AS experience and as such does not require its own specific and fragmented label.

As such, many feel that the addition of yet another label such as PDA to the Autism Spectrum, is an un-necessary attempt  by some professionals to further eradicate or seek to re-define AS as a personality disorder.

Given the changes taking places within the DSM-V one would be wise to at least ponder the potential of these arguments.

However, at the same time, I have to acknowledge that I am coming at the whole PDA side of things from a mother’s point of view.

And from a mother’s point of view, I can’t help but feel that a diagnosis of AS alone, although it may be accurate to a large extent, still does not provide me with enough of an explanation as to why my child behaves so aggressively and manipulatively at times.

Yes children with AS get overloaded with social stimuli, yes they have meltdowns,  yes they can  be aggressive, yes they like to be in environments that they are both familiar and comfortable with, but on the whole, do they willfully  seek to manipulate, confront or act physically abusively  toward people?

These are the things that I do not, as yet, know.

At the moment a diagnosis of AS alongside a diagnosis of PDA provides me with a far clearer picture of what it is that  my child may be experiencing.

As a mother my goal is to try my best to understand and help my daughter.

I’m not trying to right the wrongs of the world in one foul swoop.

Nor argue semantics over whether or not PDA, as  a conceptual diagnosis on the whole, is either correct or valid for every individual with AS, as I suspect indeed, it is not.

And I have found that there are many parents out there who find the explanations that PDA offers a valuable way of helping and understanding their children.

So is PDA, as an explanation for aggressive behavior in children with AS a worthwhile path to go down?

As yet I’m not 100% sure.

But what I do know is this;

It is better to have a mother who is trying to help and understand her child, than to have a mother who is not.

It is better to have a mother who seeks information and accurate explanations, than to have one who blindly follows whatever the current bells and whistles of the day may be.

Am I wrong to question the worth of attaching any possibly incorrect label to my daughter?

Am I wrong to logically seek to weigh up the pro’s and con’s behind an explanation that seems to fit, yet others find so irksome?

Am I wrong to consider the opinions and life experiences of others?

To ask those who have the privilege of knowing the PDA debate from the inside out how they feel and what they think about it?

No, I don’t think so.

I think it would be wrong of me to do anything  otherwise.

Too Many Words

Too many words,

Written in haste,

Serve to castigate,

Denigrate,

And differentiate,

The abberent form,

Too many words,

Seek to define,

And divide,

Our shared humanness,

As if Disability and Ability,

Were issues separated,

One from the other,

In some seemingly distant,

Mysteriously held,

Genetic planet.

This constant search,

For an un-caused effect,

Ceaselessly runs through my universe,

Without pausing once to consider,

The processes of due care,

Or  the consequences,

Of  un-scripting nature,

With  such reckless,

Discontent.

 

Language Of The Soul

A poet’s words,

Are not just written,

They are an inscribed,

Razored calligraphy,

That enters the skin,

Allowing words,

To be worn forever,

From the outside,

In.

 

The Power of the Unspoken

A touch,

A look,

A frown,

A hand-held up,

In silent gesture.

Concerns formed,

Through the soundless motions,

Of stifled exhalations,

A natural exchange,

Of Silent emotions,

Where all that remains,

Resides,

In the realms,

Of  the perpetually,

Unspoken.

 

Rural Life’s Silent Sentinels

The landscape stands,

As a Sentinel,

Silently,

Awaiting,

The birth,

Of another,

Day.

About this photo: This image when I viewed it through the lens struck me as somehow haunting. It seemed almost as if the landscape itself were standing, silently, like a sentinel, awaiting another day.

 

Beaded Web

 

Winter’s morning,

Beads of dew linger,

Enhancing the beauty,

Of a spider’s web.

Making it appear,

As if the barbed wire ,

Were adorning itself,

 With a necklace,

Of  the most extraordinary,

Design.

About the photo: Once again I was struck by the unique beauty and skill with which nature re-makes the detritus  or human waste into something other.

Tackling Autism’s Myths. My son has empathy for others. My son has a heart. My son has an imagination

Empathy (software)

There are many myths surrounding the perceptions of what individuals with Autism can and cannot do, or more specifically what those with Autism can and cannot feel, think, or experience.

For instance many people still believe that individuals with Autism are incapable of feeling empathy for others, or that they are incapable of either feeling or reciprocating love, or engaging in imaginative play of any kind.

Of all of these erroneous beliefs, I find the first one the hardest of all to contend with, as I believe this particularly nasty diagnostic myth (lack of empathy), feeds directly into the second idea that those with Autism can’t feel love.

My son has a great degree of empathy for others.

He may not always express it in a way that others can readily interpret as empathy, but none the less, it is there.

The day one of his friends at school broke his leg on the trampoline, my son came home and after slamming a few doors, promptly burst into tears.

After a phone call to the school, the drama of the day was revealed and I was then able to talk to him about it.

It turned out that he was worried for his friend and he needed to be reassured that his friend was no longer in pain.

After those facts were established.

He then wanted to know why he wasn’t allowed to go in the ambulance.

He did after all have his first aid certificate, he reasoned, and he might have been able to help.

Besides the ambulance had lots of cool things  inside  of it and he’d long been fascinated by items such as defibrillators.

So for the next few weeks, our household was bombarded with requests for my son to be taken to the hospital to check on his friend and make sure the hospital staff were doing things the right way.

My son cried when the whale got sick in Free Willy.

He cried with the dog died in Marley and Me.

He cried when he realized that ET couldn’t ‘phone home’ and insisted on sleeping with the phone next to his bed just in case he needed to phone me in the middle of the night.

In short he has empathy.

He expresses his empathy in ways that may focus more on what he can do to fix a situation, on in ways that get caught up within the smaller aspects of bigger events, (ie he now won’t go on the trampoline at school for fear of breaking his own leg),  but all of these expressions are evidence of his ability to feel empathy for others.

As for love, well, anyone who knows my son, also knows about his mandatory requirement for seven hugs a day.

He loves the people in his life without reservation.

His love is a no holes barred approach.

People stare at us in public because he is 16 and still holds my hand and hugs me as if I’m going away and he’ll never see me again every morning at the bus stop.

If anything, his Autism makes him love indiscriminately.

He will try and engage with anyone and everyone who will take the time of day to try and understand him.

He will even hug complete strangers if  there’s something about them that looks nice to him.

And lets face it, just occasionally, wouldn’t we all like to do that?

Yet the myth that children with Autism can’t or won’t express affection, has become so strongly accepted, that  at the beginning my son’s diagnostic process, we were told that he probably didn’t have Autism because he was too friendly and  affectionate.

Never mind that he couldn’t walk or talk  by the age of four, or constantly lined up everything he could get his hands on, or would attempt to eat rocks and other inedible objects, or couldn’t look you in the eye,  apparently the fact that he could express love for those around him, meant that he couldn’t possibly be Autistic.

Well that assumption turned out to be quite plainly wrong.

And as for imagination, well, as far as I’m concerned, any individual, child or adult, who can spend multiple hours lining up their possessions in rapt fascination, or gazing adoringly at sunlight reflecting on a window for hours, or quoting verbatim entire lines from TV shows and movies, is indeed expressing a form of imagination.

What ever it is they are seeing and feeling whenever they are caught in those moments of delight is indeed an aspect of their own imaginations every bit as powerful as a religious conversion.

Sure it may not provide them with the same  kind of imagination that enables ‘social play’  but in their world  it is  still an expression of imagination.

Case in point, I remember taking my son and his friend, Miss E, (who also has Autism)  to a Special Children’s Christmas Party one year, not at all expecting things to go particularly well, what with all of the noise and commotion of other children running around,  only to find that both of them, hands entwined, spent the entire two hours we were there, spell-bound by the fibre optic flashing lights on a larger than life Christmas tree.

So in front of that tree we stayed.

His friend Miss E, kept saying over and over again, “isn’t it so beautiful” in the kind of slow monotone voice usually reserved for someone who is stoned.

My son for his part, just gazed and gazed, eyes straight ahead, a smile bigger than Texas on his face.

At that moment in time they were both  high.

High on life.

High on whatever it was they were seeing within their mind’s eye that enraptured them so.

I joked with Miss E’s mother afterward that our children had been engaging in ‘parallel play’ as they were indeed standing side by side while they were lost in their own unique miraculous minds.

Flash forward to now and my son’s favorite thing to imagine is that he’s directing the eighth episode of ‘Buffy the Vampire Slayer‘. A show which he both loves and adores with every Vampire Slaying ounce of his being.

I kid you not. For years he really thought that he could, should the opportunity arise, slay a vampire.

I was forever finding twigs and the odd bit of wood under his bed.

So he clearly has the ability to engage with  imagination.

He also clearly has the ability to feel and express empathy for others.

And he has always had the ability to feel and express love for others,.

Check, Check, And Check.

Or, as they say on yet another one of my son’s favorite TV shows.

“Autism Myth – Busted“.

 

Field of Dreams

As I wandered through a friends farm,

I couldn’t help but  wonder,

At this hidden structure,

With its arms,

Bound by twisted twine,

Yet still rising up,

To greet the winter sun,

What was it there for?

What had it signified,

To whom ever built it?

Was it a symbol of protection?

Hope?

Or rejection?

An element designed,

To keep the birds at bay?

Or a child’s fantasy landscape,

Complete with the phrase,

‘If you build it,

They will come,’

What ever it was installed for,

It struck me in that moment,

As a landmark of time,

Hauntingly and unexpectedly,

Beautifully desolate,

Rising up as it was,

Like a forgotten arrow,

Amidst a disused field,

Partitioned  off only,

By a broken fence.

 

A Change Of Theme

Which theme page do you prefer?

I’m looking for a new one but can’t seem to find one  that’s the  right fit.

What would you recommend?