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,………..
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.
- Warning of Tragic Funding Consequences For Those With Autism/Asperger’s Syndrome Under the DSM-V (seventhvoice.wordpress.com)
- Temple Grandin on DSM-5: “Sounds like diagnosis by committee” (salon.com)
- 4 important facts and misconceptions about Asperger’s syndrome (msbenjibooks.wordpress.com)
- Welcome to my blog! (asperger1.wordpress.com)
- Nobody wants to be an Aspie (marickstudioscincinnati.wordpress.com)
- “The Autistic Brain” (ireport.cnn.com)
- Social Media…a potential minefield to an aspie (jimplunkettcole.wordpress.com)
- Partnering with an Aspie (annaraven.blogspot.com)
- Coming Out With Autism: Welcome To The Spectrum (writingstrange.wordpress.com)
- Daughters, Dishes and Cats. No we’re not Aspies at all in this house…… Reality Blogging (seventhvoice.wordpress.com)