So if you are one of those parents who think that acting like a hammer is going to change your child for the better, then please, please, please, think again.
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.
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“.
To my great surprise, many fellow bloggers read it, especially those with an interest in Asperger’s.
I say to my surprise because at the time, I think I had maybe all of 3 followers, so I certainly didn’t expect for my post to even be read let alone cause a stir in any way.
Yet cause a stir it did and in less than 24 hours of posting, it had received over 63 hits, and several not so nice comments.
Mainly from other bloggers who felt that my assessment of my acquaintance and her situation had been unfair.
Some felt that my post sought to attack those who either self-diagnose or self-identify with Asperger’s Syndrome.
My point at the time however, had been that applying the ‘label’ Asperger’s Syndrome to oneself does not and should not mean, that you suddenly expect an automatic exemption from taking responsibility for your debts and your own way of life.
After all, I reasoned, if you’ve made it to the age of 40 as an independent adult, why should a ‘label’, whether it be fitting or otherwise, suddenly preclude you from having to pay rent?
The post was essentially my way of trying to unpick a truth from a lie.
My truth. Her lie.
You see for me, gaining a fresh understanding of yourself, through identifying with Asperger’s syndrome or any other distinctive set of characteristics isn’t about opting out of life; it’s about finding new ways to opt into it.
It’s about discovering why you might find it hard to make eye contact all the time, or why crowds bother you, or why people might have assumed in the past that you were an aloof or unfeeling person, when you know in your heart that you feel deeply for others and that most of the time, what people misinterpret as aloofness, is really a reflection of your own level discomfort in social situations.
To me, gaining a new understanding of yourself should be used to enhance your life, not treated as an opportunity to avoid paying back rent and I simply could not understand why another person would choose to use Asperger’s in this way.
Many bloggers disagreed with me. Some bloggers even posted links to my page along with their own scathing responses to my honest and open questioning of the behaviour of another.
To be honest with you, having the meaning of my words miss-read and taken out of context in this way, scared me.
So too did the way in which my post was used to catapult the opinions of others.
As a newbie to blogging, I had no idea how linking posts or all the rest of it even worked. So I really was both stunned and hurt by the way it all took off.
After a few days I took the post down and seriously considered quitting blogging altogether.
I quite literally almost quite blogging before I’d even properly begun.
Never-the-less, I kept reading other people’s blogs to try to get a genuine sense of why so many people find blogging to be such a positive experience.
Sometimes I read posts that I could relate too. Other times I read about experiences that were so far away from my own way of being that they made my head spin and always, always, I read the comments that accompanied each and every post.
What I found was that the comments on other people’s blogs were, in general, positive, caring and supportive.
This seemed to be the case no matter what the topic of the blog.
This gave me hope that perhaps my blogging naivety had led me to address the issue in the wrong way and that the comments I’d received were a consequence of this.
I remained silent for a more few weeks, then began posting some of my poetry instead.
This is when I truly began to experience the level of care and support that being apart of the blogging community can bring.
Now I blog about anything and everything under the sun because like everyone else my life is made up of more facets than just one.
Yes my son has Autism and I will always write about our experiences together but my life is also filled with so much more.
I’m a mother, an academic, I’m a writer, I’m a feminist but most importantly, I’m a human being with my own set of eyes of my own unique way of taking in this world.
For all of these reasons my blog is a somewhat of an eclectic space. Filled not just with issues and concerns dealing with Autism, but also with experiences and imagination, hopes and the occasional clattering ring of reality.
I think because my blog space is so eclectic sometimes the responses I get to my posts are good, sometimes they are a bit hit and miss, sometimes there are only one or two, but always they are appreciated.
Either way I am so very glad that I didn’t let my first negative blogging experience prevent me from going on and enjoying all that blogging has to offer.
I have now learned that my only obligation as a blogger is to be honest.
I can’t take responsibility for how another interprets my words.
All I can do, all any of us can ever hope to do is to share our own worlds, as openly as we dare, with our own words.
What were your first blogging experiences like and what did you learn from them?
Firstly I’d like to say a big thank you to the following bloggers who all submitted a poem for me to share with my son.
Thank you all so very much for the emotion, love and understanding that you have all shared. As far as I’m concerned you are all winners.
The poems my son responded to the most were the ones that reflected his great love for all things Dr Zeus ……..
So the winners are…..
The beautiful Missus Tribble at http://rosewinelover.com/ with her poem….
From The River To The Sea
Words flow and babble in my mind
Chattering like a gentle brook
The swelling river comes to play
Taking my words to make them flow
Life’s words the river carries along
To make a story, or perhaps a song
Gentle as a lover’s touch
My words are bouyant and carried thus
My words reach out beyond the void
Reaching out to guide and teach
They fill the ocean, swell and grow
And wash up on a gentle beach
©Gemma Wright, 2012
And the wonderful Skipmars at http://skipmars.wordpress.com/ for his poem…..
All The Clocks Are Broken
All the clocks are broken,
Least, near as I can tell,
Oh sure, they look like they’re okay
But they’re not working well.
For instance, they begin to slow
Just ‘fore each special day
(Like Christmas, or the end of school,
Or near my next birthday).
A gear gets stuck, the clock hands crawl –
Ten minutes lasts an hour . . .
I’m telling you, as far as Time,
The clocks have too much power!
Like when you need some extra ticks
To take a test, or sleep –
Those hands fly round their circled field
Like dogs loosed from their keep.
I know it’s a conspiracy,
A mean and nasty plot,
To shorten or to lengthen
All the days and hours I’ve got.
It’s not just me. There’s others know
(Some grownups and some kids);
That tactics of time monitors
Have left us on the skids.
Like, when she visits every year
My Gramma says to me,
“My gosh, the time has sure flown by,
You’re taller than a tree!”
And Dad, when Mom and he are late
To some bigwig affair
Complains, “She sets her clock for turtle time,
We’ll never make it there!”
The problem is, near as I know,
There is no way to trace
The slowings and the goings
On any timepiece face.
When one speeds up they all agree,
There’s no clockwork dissent.
When one slows nearly to a stop
They concur and they consent.
So here we are, the lot of us
At the mercy of these fiends
That speed and slow at their cruel whim,
And dangle us like beads.
We could, of course, rebel and fight –
Resist the time regime;
Not worry ‘bout how long or when,
But sit back, quite serene.
Give Time its place and move along
As Life will lead us through;
And all the clocks, through ticks and tocks,
Will give us time that’s true.
The reality, it’s sad to say,
Is we won’t change one bit,
But continue on the status quo
And here, in Time, we’ll sit.
by L. Stewart Marsden
Once again ……Thank you all so much for being a part of our blogging community and for taking part.
If you’d like to go back and check our all of the gorgeous and inspiring poems that were submitted please feel free to follow the original link to do so.
With much warmth and appreciation,
Seventh and Son = )
Our societies system of assessing and coordinating services and supports to families and young adults with disabilities has been developed on the basis of a significantly misinformed analysis of what certain types of disabilities actually are and how they occur.
In short this system is fundamentally flawed at its very core. This in turn has caused the denial of services to those with misunderstood conditions such as Autism and Asperger’s Syndrome, particularly for women and girls. But it’s not all rosy for boys either, many of whom still miss out on receiving vital medical, educational, financial and workplace supports due to the fundamental errors this system makes in defining and deciding the level of functional severity required to qualify for support.
As a society we like to think that greater levels of recognition will create greater levels of support and understanding but in the meantime… we are now facing the largest en mass wave of young adults with Autism and Asperger’s ever to enter into our communities and those young adults need support services now.
It’s not good enough to say that the NDIS will come on-line in 7 years. We need those support services now otherwise we as a society will have to own up to knowingly creating “Autism’s Abandoned Generations”…. Those whose differences are noted by professionals yet not considered severe enough, by more professionals, to warrant the support that many parents and young adults themselves declare that they need. As parents many of us of have been shouting from every corner of the globe trying to raise awareness of the ways in which our children have been made to suffer the ignorance’s and intolerance’s of other people. We hoped that one day our children would be able to speak for themselves as adults and many of them now are and have been for quite some time….
The problem is… they are not being listened too any more than we as parents were listened too when we first spoke up and out for our children. Politicians and medical professionals continue to ignore the immense and continuously growing body of literature on Autism and Asperger’s written by adults and parents. It seems that the experiences and understandings of adults with Autism and the parents who deal with the needs of autistic children on a daily basis and who are more often than not well-informed and well-educated, are still not being heard.
The only time professionals seem capable of changing their opinions is after the personal experience of having a family member diagnosed with Autism and even then, for now at least, those brave enough to admit to it, remain either in the minority or are ostracized. So what will it take to amend this problem and why is there such a horrendous level of resistance toward acknowledging the diagnostic mistakes of the past (Refrigerator Mothers & other Autism Myths)? Do any of us really believe that reframing the method or manner of diagnosis within the new DSMV will do anything to address this? I for one think that it’s time that our young adults and their parents heard the words “Sorry… We got it wrong……What can we do to help”….. Wouldn’t that be nice?
(P.S. Yes I know… globes don’t technically have corners!)