Author Archives: seventhvoice

Words from a newly diagnosed Forty Something Female Aspie

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I call myself a newly diagnosed Aspie because although I have self identified as an Aspie for the last year or so, I hadn’t been formally diagnosed.

Now I am and suddenly my world has changed again.

Previously, in my naivety, I hadn’t thought that receiving a formal diagnosis would make any difference to me at all.

Being as I am a woman in my forties, whose already lived through the nightmare of constantly trying to figure out the hidden rules of social interactions and failing miserably at the task, I’d thought that reaching an understanding of myself, for my own sake, was enough.

And for some no doubt this is true.

Yet I also now realize that not being formally diagnosed held me back in ways that worked to my over all detriment.

You see, I never really felt like I could tell anyone about my own inner discoveries.

I held a constant fear that people would laugh at me or not take my self diagnosis seriously if I told them.

That they would instead peg me as just another maladaptive loser in life’s lottery looking for nothing more than a convenient excuse to explain my own social inadequacies.

I know now, beyond the shadow of a doubt, that receiving a formal diagnosis has finally laid all of these internal fears to rest.

It doesn’t matter to me any longer whether people believe me or they don’t.

It doesn’t matter to me whether or not some will choose to look down their noses at me for finally openly acknowledging that I am different.

Or that I view the world in a different way to that which others do.

Or that I’d rather stay home and read a good book over going out to dinner with a group of people who leave me either constantly lost or eternally bored by their conversations.

You see, I don’t care who’s getting it on with who.

I don’t care what the latest celebrity gossip is.

I don’t care how many shoe stores person A had to go to before finding the perfect shoes to match her outfit.

And I don’t care about shopping lists, hairstyles, the latest invention in anti-wrinkle creams or the newest foundation fades.

I’ve already grown so long past  tired of having to pretend that I care about any such mundane things in order to pass as “sociable” that these days I don’t even bother to feign interest in it.

I’ve been told so many times by so many different people, that I come across as being  “aloof”, “disinterested”, “superior” or just plain “rude”, that I’ve lost count.

Truth is, that while I may indeed at times be entirely disinterested in the conversations going on around me, it’s not because I don’t care for the people who are speaking their empty words at me, often times I care deeply about those people, I just don’t know how to connect with them and they never seem to notice that I need more than idle gossip to get me through my day.

As for being “aloof” well, I guess anyone who hangs back while conversations are going on around them at lightning speed and always chooses to take the seat closest to the exit allowing for the fastest get away possible, may indeed appear that way.

Yet I am not “aloof”.

Nor do I feel myself  to be “superior” to anyone.

I mean seriously, how on earth can anyone who struggles so much to understand the invisible realms of society, ever consider themselves to be “superior”?

Truth be told, I’ve spent a great deal of my life feeling absolutely inferior to everybody else and believing myself to be “dumb”.

Going to University as a mature age student was nothing short of a huge leap into the great unknown for me.

I felt for sure that I would fail every single class in my first semester and then that would be that and I would know for sure the problems I’d been having were all indeed because I was dumb.

To my great surprise I didn’t fail anything.

Well not academically, anyway.

I discovered that my analytical and overtly logical way of looking at the world did indeed hold more than some merit.

After this discovery, I then came to the conclusion that, whilst I wasn’t dumb, I never the less  had what I began referring to as  a very low social IQ.

It wasn’t until I’d begun work on my Honor’s Thesis that I first became  aware of the traits of Asperger’s in women.

I can not even begin to describe to you the feeling of ‘coming home’ that this awareness arose in me.

It was as if someone had finally connected all the missing dots of my life  that had puzzled me so and at last I was able to see the bigger picture.

Those discoveries were made almost 3 years ago.

Since then I have spent endless hours researching Asperger’s Syndrome in Women.

How it’s been denied as existing in women  in the past.

How it’s been a constant source of almost criminal medical negligence for far too many women who have been left at the mercy of a world that’s turned it’s metaphorical back on them.

How the inability and unwillingness of many within the medical fraternity to understand and accept that Asperger’s can present differently in women and girls than it does in boys and men, has caused entire generations of women to remain either undiagnosed or completely  misdiagnosed with errant and in most cases imaginary personality disorders.

For all of these reasons I’d decided that I did not want to seek a formal diagnosis by placing my life in the hands of  a medical establishment whom history had already shown had so consistently gotten the diagnosis of Female Asperger’s so wrong.

However, my line of thinking changed when I began to notice many AS traits in my own daughter.

I had to ask myself whether or not I could stand idly  by and watch her struggle valiantly to fit into a world that she could no longer make head nor tail of?

Could I stand by and watch as  sadness and confusion began to daily fill her eyes without doing anything to attempt to change it?

No. Despite my fears of  her being misdiagnosed. I could not stand by and watch my daughter fall into the very abyss that I myself had only just managed to crawl out of some forty years later.

The journey toward diagnosis for both of us has by no means been an easy one.

It has taken over 2 years of trying to get help for my daughter, of being told over and over again that my daughters reactions to this world can be explained away by either poor parenting,  my divorce or some other hidden form of family dysfunction, and that she did not fit the criteria for Asperger’s Syndrome simply because she wore make-up and cared about her appearances.

My pleas to the contrary, that she was merely trying to fit in the best way she knew how,  went unheeded.

It wasn’t until my daughter entered High School and not long after tried to take her own life, that someone out there finally listened to my many pleas for help and began instead to try to form a genuine sense of understanding as to what  it was my daughter was actually experiencing.

No child should ever have to feel so lost within this world that  they view taking their own life as the only way of taking away their suffering.

And she was suffering.

Yet even when I’d done my best to point this out to those who were supposed to help, they continually denied my daughter even the smallest pieces of understanding and instead chose to blame the very person who was laying themselves on the line by asking for their help in the first place.

It was obvious to me that her peers had moved past her capacity to socially keep up with them.

Despite this,  no matter how many times I tried to explain my daughters predicament to the professionals that be, I found myself   ignored time and time again.

Yet my daughter was lost and alone in the playground of  what she’d been told by others would be “the best days of her life”.

It’s little wonder, given this context, that she did what she did.

Fortunately I got to her in time and she’s now being given the help and understanding she required years ago.

She has been diagnosed as having Asperger’s Syndrome.

I can not even begin to tell you how much it angers me that it took such drastic action on her part before anyone saw fit to truly listen to her, to me, to us.

It saddens me that there are so many girls and adult women out there who are still suffering from this willful form of diagnostic neglect.

In my case, as an adult, I chose not to come forward out of fear of being misdiagnosed.

Yet when I did come forward, for my daughter’s sake, we both initially had our experiences marginalized and ignored.

It is this medical marginalization that very nearly cost me and my daughter, her life.

So if you are working in the medical profession as Psychologist, a General Practitioner, a Pediatrician, or even  simply working as a counselor…… please, please, please,………..

Listen……………..

Take action……….

It’s not always about dysfunctional families and girls do experience Asperger’s Syndrome………… and it’s got nothing what so ever to do with the ability to wear make-up!!!!!!

And if you are a mother and you think you may have Asperger’s Syndrome, be brave and take the plunge toward receiving  a formal diagnosis because you never know whose life you may be saving by doing so.

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The Miracles of Blogging

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One of the things that continues to amaze me about blogging is how a post written almost a year ago, can suddenly jump back up and find itself with a whole new audience of readers.

This has happened today with my post http://seventhvoice.wordpress.com/2012/05/23/dog-fox-field-the-history-lesson-behind-australian-poet-les-murrays-powerful-poem-on-disability/

I do not know who has picked up this post and twittered it out into the digital universe  once again for all to share but I am grateful to whom ever did so.

To me;

It is one of the miracles of blogging,

That words,

Penned so long ago,

Can still reach out,

And speak in the present,

To the minds of others.

To whom ever breathed new life into this post,

Thank you.

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A Childless Mother, Is still A Mother. Though her arms may be empty… her heart never will.

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Mothers Day has always been an incredibly difficult day for me.

Filled as it is with  mixed emotions but not for the reasons you might think.

It’s not a difficult day for me because I have a son with Autism or a daughter on the spectrum.

In many ways their presence here helps to counteract the whirlpool of emotions that this day normally stirs up in me.

Mother’s day is hard for me because I am, or at least I would have been, had everything gone to plan, the mother of seven children.

You see, four of my lovely ones never made it kicking and screaming into the light of this world.

So every Mothers Day I sit and I think about the babies that I never go to hold.

The faces I was never allowed to touch and love.

And I wonder what they would have looked like now as strapping young adults.

I wonder what their personalities would have been like and who they might now have been.

Would they have been artists or writers?

Would they have had that same broad grin that my middle son wears like a badge of honor?

Or those same amazing amber eyes as their sister?

Would they have been as tall as my living eldest son or more on the shorter side of life like me?

I guess it’s normal for mother’s like me to wonder and occasionally let ourselves dwell in the mystical land of ‘what could have been’.

I guess some would even say that I’m still grieving their loss and I yes, in a lot of ways I probably am and always will be.

I know that it has gotten easier with time.

Yet I will always remember that the awfulness,  of breathing my way through  every single Mother’s Day that left me unmarked and unacknowledged as a mother, during those years of enduring loss, were some of the most pain filled days I have ever known.

During those days I often used to wonder what to call myself.

After all what do you call a childless mother?

Common sense would say that there can be no such being as a childless mother and yet, there I was, every single Mothers Day for four years, struck numb by being exactly that  which logic dictated I should not be.

A childless mother.

Despite that I  knew, that even though I was a childless mother, I was still a mother.

Though my arms may have been empty, my heart was always full.

So to all the childless Mothers everywhere, I honor you, I recognize you and I declare with all my heart that;

You are now,

And you will always be,

Mothers,

Worth celebrating.

 

 

 

 

 

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Mum… don’t leave your Facebook logged in on my Ipad……

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My lovely daughter took over my Facebook for a brief period of time today.
If  any of you received any comments that you felt may perhaps  have been a tad bit unusual from me….
Especially those followed by an XOXO……..
Please know that my daughter enjoyed your posts immensely ……
And of course…..
She left me a message of her very own just to remind me never to be so absent-minded again as to leave my Facebook logged in and unattended.
Below is the message she left me.

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This is what I said to my doctors at the asylum ;) xo

P.S I got out 8 weeks ago today :) .
Mum don’t leave your Facebook logged in on my iPad…

Oh and just in case any of you are wondering…..
I have not just escaped from the asylum……
And yes….
My girl does indeed have a wicked sense of humor….

 

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Crappy Parenting is a Spectrum Disorder

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Reblogged from Laughing Through Tears:

Click to visit the original post

Dear Random Internet Strangers:

Please stop telling me that I don't love my children. It's sort of judgmental, considering how you've never met me. And while you're at it, please stop telling me that I'm a bad parent. That's just a given.

April's been a harsh month. It felt like everybody with an internet connection decided to honor Autism Awareness/Acceptance/Ambivalence Month by gracing us with their opinions about how badly we're ruining our kids.

Read more… 719 more words

This post is similar to the post I wrote a few weeks back......http://seventhvoice.wordpress.com/2013/05/01/love-me-or-hate-me-this-is-my-response-to-a-comment-that-to-me-tipifys-the-worst-aspects-of-the-autism-community/
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Sterilization whose decision is it? The fine line that parents of teenagers and young adults with severe cognitive disabilities must walk between honoring their childs human rights or committing ‘acts of violence’.

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A  new Senate inquiry into the sterilization of people with disabilities is reigniting a decades old debate within Australia.

One of the key questions this inquiry will be asking is whether or not anybody has the right to choose sterilization as a valid option for another person?

Especially if that other person doesn’t have the capacity to speak for themselves.

In one of my previous posts http://seventhvoice.wordpress.com/2012/05/21/the-techniques-of-bias/ I explored the ways in which the very distinct form of language used to frame and dictate the parameters considered valid within the sterilization debate, act as  gate keepers of thought, preventing even the most liberal or fair-minded of us from being able to make any clear distinctions as to just whom these laws should and should not apply too and how.

To which I stated:

“Most of us agree that disability or not, there are certain human rights that are, or at the very least should be, considered mandatory for all human beings.” The Techniques of Bias.

I still stand by this statement however,  I would seek to question just when it is that the human rights that we consider to be indelible and at all times in the best interests of those involved, cross the line into becoming inhumane rights?

Parents of teenagers and young adults with severe cognitive disabilities, particularly those with girls/young women are facing what can only be described as a double-edged sword that is continually slicing away at them within this debate.

The example I gave in my previous post in ‘the-’techniques-of-bias, regarding a loving family who had requested sterilization for their severely cognitively disabled daughter, and had been knocked back three times by the Guardianship Board, find themselves once again in the firing line within this debate.

They are being held up and accused once again of trying to steal their daughters human rights away from her by requesting that she be sterilized.

Yet no matter how cold heartedly these parents are being portrayed by those who wish to abolish the ability of parents to request sterilization on behalf of their severely cognitively disabled children , I know that the idea of sterilizing their daughter for sterilization’s sake, is absolutely the last thing that these parents wish to engage in.

They don’t want to have to be a part of this fight.

They just want to do what is right for their daughter.

Far from seeking to remove their daughter’s human rights by applying to have her sterilized, they perceive themselves as trying to add to their daughters human rights by giving her the best opportunity of improving the quality of her every day life.

As parents, they want nothing but the best quality of life for their severely disabled, 6 foot tall and incredibly physically mobile 20-year-old daughter, who has a disintegrative developmental disorder similar to that of  severe autism.

Although 20 years of age, her cognitive acuity hovers somewhere around that of  a 2-year-old.

She is non-verbal and requires 24 hour constant care.

For this family, achieving the best quality of life for their daughter, means alleviating the stress and the trauma that she experiences every time she menstruates.

Fortunately, most of  us are not faced with having to help a 2-year-old in a twenty year old’s body who becomes so highly distressed during her periods that she regularly engages in acts of self harm whenever she menstruates.

For these parents however, such acts include their daughter trying to eat her own sanitary pads, smearing her menstrual blood all over her body, face and home,throwing herself at walls, bashing her head repeatedly against the toilet bowl at the sight of her own menstrual blood, and becoming so highly agitated and hysterical that medication is required to calm her down.

Speaking out publicly about their situation they state that “as parents they have tried several less invasive options to try and prevent their daughter from menstruating including two different forms of contraceptive pills, implants,  and  a menstrual management program, all with “disastrous results”.

Her mother states that “the moodiness caused by the contraceptive pills we’d tried only further exacerbated our daughters anguish….. we’ve had broken furniture, scars from where she’s scratched and bitten us, and my other daughter had a whole clump of hair pulled out of her head”.

“No one should have to feel as angry as my daughter does and put up with having those side effects from medications. I just can’t imagine putting her through this for another 30 or 40 years.”

“To me, that’s cruel”.

“That’s inhumane”.

“There is just no dignity in any of this for our daughter. She doesn’t understand what’s happening to her and (having her period)   is stopping her from being able to enjoy those things in life that she would usually be able to enjoy.”

Both parents therefore viewed sterilization as their last and only hope of enabling their daughter to retain both her dignity and her quality of life and stated that being “knocked back by the Guardianship Board for this procedure has left their entire family traumatized.”

“Unless you have lived in this situation you don’t really understand it”.

“I just think it’s wrong that people can vilify you, criticize you and judge you,  when they don’t really know what it’s about unless they have walked in your shoes”.

“Any decisions we make about our daughter are about making her already incredibly difficult life easier for her. It’s not about us. It has never been about us”.

This mother’s bravery in once again speaking up and asking that her own daughters human rights be considered on an individual and a ‘what’s best for the person concerned’  approach, indicates that there must be room made within any legislation regarding this issue, that addresses the very complex and complicated issue of cognitive disabilities.

Especially considering that many within the disability community and activist groups view the sterilization of people with disabilities as “an act of  violence amounting to both torture and a form of eugenics designed to do nothing more than improve the human race” (Frohmander 2013).

When spoken about in these terms, sterilization becomes seen as “an abuse of a man or a woman’s fundamental human rights” (Frohmander 2013).

Given the terrifying history of sterilizing all people with any form of disability that has in the past, held sway, I can well understand why many in the disability community are pushing for a ban on the sterilization of any person with a disability within this latest Senate inquiry.

However, I do questions, especially given the situations of the parents I’ve outlined above, whether or not, in all cases, a parent requesting sterilization for the betterment of their child’s life, must always be seen as being equal to either “abuse” or “committing an act of violence” against their child?

As it stands in Australia right now, it is possible for a third-party, either a Guardianship and Administration board, or the Family Law Court, to legally uphold a parents request to have their teenager or young adult sterilized.

Given that there is a mountain of legality involved in making such a request the decision to press forward with any request of this kind is not one that is made  lightly by the  parents of teenagers or young adults with any form of disability, let alone a severe cognitive disability in which the body, for all intents and purposes is seen to “function normally”.

Yet this is no longer an issue that revolves solely around the rights of those with physical disabilities or mild intellectual disabilities, who can speak for themselves and whom I thoroughly agree must have every right to make their own decisions about each and every aspect of both their bodies and their lives, but it is also an issue that must enable those so endowed with making any final decisions on behalf of those with severe cognitive disabilities, the capacity to treat each request for sterilization, from a person centred, best outcomes approach,that encompasses a greater understanding and awareness of the needs, and therefore a broader understanding of what it is that encompasses the human rights of every  individual that comes before them, regardless of the form that individuals disability takes.

I’m yet to be convinced that we should be seeking to treat this very serious issue as if it were a one size fits all dilemma capable of being fixed by a one size fits all piece of blanket legislation?

What do you think?

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