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such, we speak from our hearts and not as untouchable academics with text-book answers for everything (no matter how out of date those text-books may be).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