Monthly Archives: November 2012

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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English: Parent Approved mark for use on the a...

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 I found  particularly disturbing was that although I have two degrees,  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As such, we speak from our hearts and not as untouchable academics with text-book answers for everything (no matter how out of date that text-book may be).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 may be dealing with.

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 the 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 ring just a little too strikingly familiar as it began  reminding me of the Doctor/ God complex that I’ve  encountered far too many times  over the years in many of my sons specialists.

My ire had been piqued 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 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 concerns and situations of parents so detached and personally disturbing.

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.

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

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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.

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Too Many Words

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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.

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Pathological Demand Avoidance. PDA. Could this be the answer to my daughters behavior ?

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2012 Behaviour Matrix copy

 

As some of you will know, I’ve been desperately seeking help for my daughters increasingly out of control behavior and, up until recently, finding little to no help at all.

One of the biggest problems that I’ve faced in my efforts to garner any form of professional assistance for her is the genuine lack of belief out there that a child of her age could act out so violently without cause.

 

Now when I say ‘without cause’, what I actually mean is that all (bar one health care professional), have sought to turn the ‘blame’ for my daughters behavior back on to me as a parent.

 

Clearly I must have been doing something wrong, like not standing up to her firmly enough, not providing enough discipline or maybe as a parent even failing to impart to her the correct and expected standards of behavior.

 

Perhaps, if my daughter’s behavior is abusive and aggressive, then it must be because I, as her mother am also abusive and aggressive?

 

Well, I’m not abusive or aggressive. I’d much rather run from a fight than jump up and start one.

 

I’ve not failed to impart to her the correct and socially expected standards of acceptable behavior.

 

As I have said before in previous posts, my daughter knows right from wrong.

 

Yet when she gets in a rage, or a ‘meltdown’, all bets are off and she can and will do anything to express her anger.

 

So after having it suggested to me that she may have Asperger’s Syndrome, by the one and only health care professional who took me seriously, and that her ‘meltdowns’ may be occurring as a result of her increasing inability to cope with a world that she’s struggling to comprehend, I thought well, I already know those things about her.

 

And I undoubtedly agree that she probably does have AS, and I have already adapted many of the routines in our life to compensate for that,…. but,….. and here’s the big but,…… she can when she wants too, cope very well with social situations and she can, when she wants too, be very agreeable, happy and easy to get along with.

 

What she can’t seem to do is understand that other family members have rights and needs too. Especially if those rights and needs conflict with anything that she wants to do.

 

So I’ve been left asking myself just what is going on here?

 

Yes she may have AS but is she now so spoilt rotten because I’ve instinctively sought to compensate for that, that she’s suddenly forgotten how to misbehave whenever it suits her?

 

Have I been such a bad parent that I’ve taught her to abuse others whenever she can’t get her own way?

 

And does she even know any longer what her own way is because nothing and mean nothing calms her down once she’s exploded.

 

Her behavior has reached the point where the slightest things set her off and there’s absolutely no rhyme or reason to it at all.

 

I’ve lost the ability to predict or fore see  where the time bombs are in her life.

 

I can’t defuse that which I cannot see.

 

Therefore, I can not stop her rages from occurring.

 

Nor can I bring her out of them.

 

Nothing it seems brings her out of her rage until she herself is ready to come out of it.

 

Any attempts to help her calm down once she’s in a rage are rejected and usually result in an escalation of her bad behavior.

 

I have quite literally being pulling my hair out trying to understand why she blows up at the drop of a hat and why once she’s up in the air, nothing can bring her back down.

 

Not even letting her have her own way with whatever it was that set her off in the first place will work.

 

This behavior has both scared and confused me.

 

Scared me because when she goes off she becomes incredibly violent.

 

Confused me because if it were just a matter of her wanting to always get her way, then why won’t giving her what she wants calm her down?

 

To me these things just did add up.

 

And then I read this post from http://bipolar-truth.com/2012/08/15/pathological-demand-avoidance-pda/   on Pathological Demand Avoidance and the pennies began to drop, and drop and drop.

 

“These children are said to resist the ordinary demands of life to a pathological degree using an abundance of tactics. They often have a Jekyll and Hyde type of personality with severe mood swings and can often exhibit severe behavioural difficulties. They may have a troubled educational history and the family may be in severe need of help and support.”

 

After reading this my jaw dropped, for this is exactly what  I am seeing in my daughters odd set of  behaviors.

 

One minute she’s my lovely girl,  and she’s calmly and rationally, though sadly accepting her father’s impending marriage,  the next minute she’s plotting to destroy him or blowing up at me over the loss of a her hair tie (of which we have a jar full, all the same size and all the same color).

 

And then I read the next part of the post;

 

“In contrast to most individuals with autism spectrum disorders, individuals with PDA appear to have an anxiety-led need to control, possessing superficial social skills and seem to have some but often significantly impaired theory of mind. They often engage in manipulative, domineering behaviour.”

 

Can you hear the sound of still more pennies dropping because for the first time, in a very long time, I think I finally can.

 

And then I read from yet another blog at http://islingtonhomeschoolmom.wordpress.com/2012/04/10/understanding-pathological-demand-avoidance-by-christie/ that;

 

“PDA is related to the autistic spectrum disorders (ASD), but varies significantly from most other syndromes on the spectrum. Unlike other ASD children those with PDA appear to understand emotions and communication…to the point of being manipulative.”

 

This was followed by the additional understanding that:

 

“These children do not recognize that they are children. And while they may fully understand the societal rules of behavior, they have difficulty applying those standards to themselves. Their deep need to control situations and their environment is born out of the intense anxiety that they experience when demands are placed upon them…even normal every day demands of life and school.”

 

Then from yet another wonderful blog http://alexcparsons.wordpress.com/2011/12/20/article-from-the-times-on-pda-extracted-from-pay-wall/I found the following information.

 

“

 

“Children with PDA essentially have an in-built need to be in control and to avoid other people’s demands and expectations, which raises their anxiety levels to an extreme extent…. They all shared an unusual resistance to everyday demands – even when related to things that they would enjoy. The children were superficially sociable but were often manipulative and lacked awareness of unwritten social rules. Their moods could switch very suddenly and they often confused reality and fantasy.”

 

Still more pennies  were dropping and then I read this, written by a mother about her young daughter:

 

“She was totally dictating our lives – what I wore, if I could make a phone call, who could come round.”

 

For me this was the clincher, the thing that’s making me believe that PDA could be the answer, because these are the behaviors that my daughter regularly attempts to apply to me.

 

She’s even gone as far as taking away my phone and my hiding my car keys so that I can’t leave the house or  call for help.

 

I know that to most people it sounds absurd that a child can create so much turmoil, especially a girl, especially a girl under the age of 13, but I’m telling you they can and I know now that I’m not the only parent experiencing this.

 

There is a term for it.

 

Pathological Demand Avoidance.

 

And I am not alone.

 

So thank you to each and every blogger out there whose posted on this topic and a special thank you in recognition and gratitude to those amazing bloggers whose words I’ve quoted.

 

You have all given me a much-needed source of information, hope and inspiration.

 

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Don’t Judge Me. Just Love Me. Asperger’s Diagnosis on the horizon.

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Being the parent of a son with Autism, has at times, been incredibly difficult.

Yet for every hard moment, there have been just as many, if not infinitely more, jaw dropping-ly brilliant moments as well.

And I am thankful for that.

But  along the way I have  always sensed that  awful  feeling that I’m  being judged as a mother.

That my son was being judged, first as a child, now as a teenager.

In a lot of respects I have always tried to push those feelings aside, as they are simply far too destructive and too hurtful to try to deal with on a daily basis.

Yes, in some ways I do advocate for the idea that ignorance is bliss (yes I know, generally a statement like this goes against everything I stand for).

However, right now  I’m wondering whether or not that form of ignorance wasn’t simply more  a bad case of bald-faced denial on my part?

Having to run head long  again into the whole Autism Spectrum Disorder (ASD) diagnostic process with my daughter is definitely dredging up some old and very unpleasant memories.

Memories that , no matter how hard I try, I just can’t make fit into the good old “ignorance is bliss” costume that they once wore.

That awful sense of being judged as a ‘bad mother’ who has somehow managed to turn a perfectly normal child into something slightly other, is back again.

The strange thing about all of this is, that  I was honestly Okay with my own personal recognition that my daughter may well be an undiagnosed Asper Girl, after all I’d made concessions for her and up until her behavior started becoming increasingly violent, we were bumping along life’s path pretty well.

So what is it about having someone else, a pediatrician to be exact, tell me that my daughter may have AS, that has made me feel so small again?

Is it because I know that we are both about to go through endless rounds of testing ?

Endless rounds of answering inane questions about family history?

“Does anyone else in the family behave differently?” or “Is there a family history of Autism?”

…….. Gee…. let me think about that one……. Yes a matter of fact…. her brother has Autism….. cue music……

Somehow, when I think about it, the whole diagnostic process back then all seemed so much easier the first time around.

Though in point of fact it wasn’t.

It was actually quite horrendous.

But at least back then, I could say, “no, there’s no family history.”

Where as now, I can’t say that.

I’m not sure why, but for some reason, that one sticky little point,  seems to be making all the difference as to how I feel about the journey my daughter and I are about to embark on.

Is it that there can be no more ignorance to hide behind now……?

Which, I guess, could explain why I’m finding it so hard to find any kind of   bliss (ignorant or otherwise)  while my daughter heads down  the path toward receiving an official diagnosis of Asperger’s Syndrome.

I know it’s going to be hard for both of us to cope with all of the questioning and well-meaning interference that engaging with any kind of psychological assessment brings.

She knows it’s going to be hard because she already doesn’t want anything to do with it.

She’s so far into denial that if you looked the word up in a dictionary there’d  be a picture of her right beside it.

Is her level of denial my fault?

No, I don’t think so. I’ve spoken to her about  AS regularly.

We’ve read “Aspergirls” by Rudy Simone together and she acknowledges that she has some AS traits.

So the idea that she may have AS is nothing new to either or us.

And yet…. somehow…. we both seem to be so completely floored by it.

And for some odd reason, that old John Denver song, “Some days are diamonds, some days are stones”, just keeps running through my head on its own constant irritating loop of logic.

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Language Of The Soul

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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.

 

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The Power of the Unspoken

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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.

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Rural Life’s Silent Sentinels

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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.

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Beaded Web

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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.

That Clattering Sound of Reality. AKA. A frustrated Mother’s Rant

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Mental Health

Tonight my daughter had another major melt down.

Once again she was yelling and screaming, kicking and smashing things in the house, as well as  threatening to end my life.

All of this begun because her brother had moved her Sims games whilst searching for one of his own Play Station favorites.

Upon discovering this almighty transgression my daughter flew into a rage of epic proportions, stormed into my son’s bedroom, and woke him up with a wave of unrelenting abuse.

Hearing this unholy commotion, I dragged her out of her brothers room and told her to stop all of her carrying on.

No harm had been done. Nothing had been broken. (Well at that stage anyway). There was simply no need for all of this fuss.

She then started screaming at me. Telling me that it was all my fault, that he knew he wasn’t allowed to touch her games, and that if anything, I should be telling  him off instead of growling at her for her behavior.

Naturally I refused to cave into that very particular and well worn  strain of  flawed logic.

So then she blew up like a time bomb whose ignition switch had prematurely been pinged.

Riding on her wave of fury she smashed anything and everything in her path.

She kicked the banister on the stairs so hard that it broke. Then yelled at me that it was all my fault and that I was to come immediately and look at what my thoughtless actions had caused her to do.

She then screamed and threatened me again with more expletives than a child her age has a right to know.

After an hour of being ranted and raved at, threatened and denigrated as the source of all of her  problems, I finally managed to get her upstairs and into her bedroom.

Once inside her room she began her usual process of slamming her wardrobe doors, punching and kicking at the walls,  all the while screaming for some non-existent person to stop talking to her, to shut up, go away and leave her alone.

Eventually the level of noise coming from her room subsided long enough for me to gather up some semblance of clarity.

Realizing yet again that I needed help with this, I grabbed the information pack that the mental health agency we’d been dealing with provided us  and called the 24 hour hot line they’d told me to call for advice if things got out of hand again.

So over the phone I explained my situation, only to be told by the man on the other end of the line, that they didn’t really deal with issues concerning children of my daughters age and that he wished the agency that had given me the hot line number would stop doing so, as  until a formal mental health diagnosis is made, there is nothing that they can do in any case.

He then told me, that from the sounds of the behavior I’d described, it was most likely that the real problem was that my daughters personality was starting to come out. In which case, her threatening and violent behavior would not be seen as a mental health issue at all but  possibly a personality disorder.

(But Hang on, aren’t they one and the same thing? I thought but didn’t say, after all who am I to know? )

The man then went on to ask me what form of help I’d received from the agency we’d been seeing. So I told him that we’d been due for a feedback session last week, but that it had been cancelled so I really had no idea as to what their assessments or recommendations for my daughter would be.

His reply was; “Well it seems like they’ve been no help at all to you, so by the sounds of it, I’d say your  well and truly on your own. So as a parent it’s up to you to either step up and take the fight right back to her, or withdraw for the sake of your own safety, which it sounds like you are currently doing.”

There was a pause after this last statement which was then followed by the words;

“Really it sounds like you are down to one of two options. Either you call the police if things start to get really out of hand (at which point I am thinking, what, only starting to get out of hand? OMG, just what do you think I’m calling a 24 hour emergency hot line for?), or he continued, get her to the nearest hospital anyway you can.”

These words were once again followed by another pause and something that sounded all too much like a sigh. Then came the rest of the happy news,

“mind you, even if you do manage to get her to the hospital they’ll probably just hold over in casualty all night and release her in the morning.”

“But she’s a child” I said, “what sort of help is forcing her to stay in A & E all night going to bring her? Especially if they’re not actually going to do anything to help her?”

“Well then it sounds like the police are going to be your best bet if you need any further help and really, at this point in time on a long weekend, it sounds like they are going to be your only option. I’m sorry to say this but there’s really nothing more that I can suggest to help you.

End of conversation.

So once again I find myself uselessly asking the night sky, why?

Why are the professionals, the people who are supposed to help, the people who have never once seen my daughter in one of her full on, completely irrational and highly agitated states, constantly telling me that there’s nothing they can or will do?

Just what is it going to take for someone to take this seriously?

I’ve already done all I can do.

I’ve swallowed my pride and admitted that this is something that I can’t deal with on my own.

I’ve put myself on the line and asked for the help that we need, but instead of getting any help all I seem to be getting is stonewalled .

Just what is going on here?

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