“You can’t possibly have any understanding of yourself and be Autistic at the same time. That just doesn’t happen’.
Well actually, yes it can and it does happen.
Individuals with Asperger’s are hyper aware of their feelings, their environment and those around them.
So hyper aware in fact that we experience sensory over load.
Yet every time we, as people, try to share our understandings of ourselves with others and attempt to have our own personal views and needs both met and respected, we run into a brick wall of prejudice.
One that ensures that instead of being listened too, we’ll constantly have to deal with having our personal truths questioned simply because of the mistaken belief that we are a particularly insular and self-absorbed type of person.
Due to this, instead of being listened too when we try to talk about our feelings, we usually end up being told things like:
-‘Why do you always look so sad? You should smile more”.
Well here’s a tip.
Why not try believing us when we tell you that we’re not sad we’re just so completely and utterly lost in thought that our faces automatically relax.
This process of relaxation means that our mouths and lips relax too.
And just in case you’re not up to speed with anatomy, it actually takes muscle contractions to create a smile.
So if a person’s face is completely and I do mean completely relaxed, there will be no muscle contraction, hence no smile.
Besides, we are aware of the fact that we’re always having our facial expressions read by those around us, as if they were some kind of social barometer that might, potentially, give the reader some kind of insight as to what we’re feeling.
We’re also equally used to being blamed for an observers inability to read us due to our perceived lack of facial expression, whenever such exercises in futility fail to succeed.
Which is, once again, why you should believe us when we tell you that we’re not sad, just lost in thought.
Perhaps a far kinder thing to do would be to try asking us what we’re actually thinking about.
By approaching us in this way you’ll give us an opportunity to bring you a little closer to our world rather than pushing us away with false observations that only serve to make us feel even more self-conscious than we already do.
-‘You should get out of the house more. You’ll feel better for it.’
For those of us who are feeling overwhelmed due to sensory overload, the last thing we need to be told is to “get out of the house’, or to ‘go out and be around people’.
What we really need when we’re feeling overwhelmed is to be left in the peace and quiet of our own surroundings and to be allowed to withdraw into our own safe space, without any ensuing argument or being accused of being anti-social.
So please, please, please try to understand that when we insist on the need to have our own space and to take things at our own pace, we’re not trying to be willfully stubborn or malignantly anti-social.
We’re simply trying to do whats best for us by being mindful and respectful of our own needs so that we don’t end up in a full on ‘meltdown’.
Usually it takes years for us to learn how and when to walk away from situations before they escalate into a ‘meltdown’ so please understand that doing so is a sign of our maturity, and not our immaturity.
Please spend a little more time trying to love us and a little less time trying to judge us.
People often ask me: “What will I gain from being diagnosed later in life? It won’t change anything for me, so why should I bother?”
Well, my answer as to whether or not anyone should “bother” to get diagnosed is this.
Firstly, on a purely personal level, it depends entirely on what your personal circumstances are and what the biggest issues are that you’re facing at any given point in time.
If you’re a person who’s main problem is that you’re always feeling misunderstood or blamed by your family member for being the way that you are, then perhaps receiving a formal diagnosis may help your family members to comprehend and accept that some of the onus for understanding both who and how you are, falls upon them to make more of an effort to accept you as you are, rather than allowing them to continue to always view you as being the one who needs to change.
Secondly, if you find that you may be in need of some form of formal support or assistance, then receiving a diagnosis may help you to better be able to access whatever support systems are in place within your area.
A diagnosis should also, at the very least, help others around you to become aware that you are genuinely more in need of care, understanding and support than they had previously thought.
Thirdly, if you want to increase your own levels self-understanding and awareness or further seek to validate your own understandings of yourself as being both true and accurate, then receiving a diagnosis may also provide these assurances for you.
But, if you are a strong-willed person who is confident enough to be able to self-identify with having Asperger’s, without feeling any twinges of doubt about it what so ever, then you’ll most likely feel that either the seeking out, or the receiving a diagnosis, is not for you as it holds little potential to offer you any great benefits.
And that’s okay.
But for me, I have found that those who benefit the most from older women such as myself coming forward and being diagnosed, are the generations of girls who are yet to come and the generation of girls and women who are still today, young enough to incorporate this deeper understanding of themselves as females who are Autistic, into their daily lives and move on.
At my age, receiving a formal diagnosis offers me purely the ability to understand myself better and enables me to finally ask for the things I’ve known for so long that I’ve needed all of my life, things such as solitude, peace and quiet, but have never been made to feel as if it were okay for me to ask for these things, because I am a woman and women are supposed to love company and to always want to be social creatures.
I had no way of explaining to anyone, let alone myself, why I’ve always felt that I needed so much time alone.
Yet for girls of my daughter’s age, receiving a diagnosis is offering them so much more.
It is offering them the opportunity of being able to grow up with the gift of truly knowing not only who they are, but also understanding how they are, and that they’re okay.
That it’s okay to be different.
And this to me, as both a woman and a mother, is the gift of understanding that I truly believe is worth fighting for.
I am so glad that there were women in the past who had the strength, courage and forethought, to lead the way forward and to lay the foundations that so many of us today are now standing on, by arguing, on our behalf’s, that High Functioning Female Autism is a very real phenomenon.
Believe me when I tell you that I am all too aware that if no woman had ever dared challenge the male based status quo of the understandings of Asperger’s Syndrome of the past, that neither my daughter nor I, would now be diagnosed.
So how exactly does receiving a diagnosis later in life help anyone and what does it solve anyway even if you do get one?
Well, for one thing, it is likely to allow many women to make sense of their pasts.
To knit all of the previously unresolved elements of their lives, their personalities, their characteristics and their traits, into some semblance of a perspective that will finally make sense to them.
So if that one singular perspective that makes sense of your life is the one thing that you’ve been missing, then getting a diagnosis, even at a much later stage in life, can still provide you with a huge feeling of relief.
In terms of gaining greater access to benefits and assistance, if you are already financially secure or successfully working, then no, receiving a diagnosis later in life, may not help you in any way in terms of on the job support training and alike.
But what it will do, is benefit your children, and your children’s children.
And if you’re not a mother yourself, then please understand that your actions and your choices, may end up benefiting your sister’s or your brother’s children.
The knowledge and validity that we as women gain from receiving a formal diagnosis, could well prevent future generations of girls from having to put up with the kinds of constant bullying that are caused by male bias ignorance.
This will enable them to grow up holding all of the answers to all of the questions that we once, as children held locked inside of our own heads, like fragile eggs, and were too afraid to ask why it was that we were so different from everybody else.
If being diagnosed later in life can help to take away from another child, that awful sense of confusion and self-loathing that comes from knowing that they don’t belong, without ever fully knowing or understanding why, then I’m all for it.
So whilst a formal diagnosis may not seem to be such an important deal individually, in the grand scheme of things, I can see how each and every woman and girl, diagnosed today, can help create a stronger, better defined and more brightly lit path, for our Autistic girls of the future to walk upon.
Unlike us, they won’t have to spend over half of their lifetimes stumbling around in the deep and uncertain dark, and that’s a good thing.
I’m not sure whether holding ideas like these makes me a dreamer, or simply yet another deluded fool.
Either way, the more women and girls who are diagnosed today, the harder it will be for the powers that be, to dismiss the needs of Autistic Women in the future.
I understand that this way of looking at things is not everybody’s cup of tea, but it certainly is mine. So comment and let me know whether or not you agree.
“I looked at the world and the world looked at me for 50 years. Then I was diagnosed with Asperger’s. Getting the diagnosis had a profound effect. Over the following weeks, a thousand shards seemed to rush together to form a single mirror. I could see myself at last. There were no distortions, no ‘missing pieces’. So I could stop searching for them.
If you’ve ever beaten yourself up about your ‘failings’ you might begin to comprehend the sense of relief. After a lifetime seeking that elusive ease that other people seem born with, I suddenly realized that they were born with it, and I was not.
I’d often watch people in an attempt to work out how they’d go from being strangers to being close. I remember seeing two people sitting on a bus. He glanced at her, then reached up and pushed a strand of hair off her face. She looked at him and smiled. How does that happen I’d wonder.
I’m told that when younger, my inability to read signals left a small succession of men feeling rebuffed and vaguely puzzled. I’m flattered and bemused. I hope they were good-looking.
Some years ago I was in a relationship. He had to practically club me over the head and drag me into the cave before I realised he was interested. To anyone else, that might have been a warning. But people with autism tend to trust what we are told because we don’t speak body language. I spent our first year together discovering how manipulative he was and the next three looking for an exit strategy.
There is a vast gulf between being alone sometimes and being alone in the bubble of aloneness experienced by many people with autism. I go out every day, to be among people, but do not try to engage with them. I sit with my book or crossword, conscious that I am being part of society. If someone took a photo of me in the coffee bar, you wouldn’t spot the Aspie. And I might not be the only one.
Social isolation is not just about having mates to socialize with. It’s true that if I go to the cinema I go alone. I eat alone. I go on holiday alone and when I get home, everything is exactly how I left it. But it is more profound than that. If I am ill, no-one will bring soup or take me to the hospital. At the end of a working day, there is no-one to talk to about the stresses or the highs. If I am anxious, I stay anxious. I have no friends I can call to cheer me up. I know nobody with a car. If I want to buy something bulky, I have to pay to have it delivered. Join a club? Been there, done that, learned new skills, went home.
I know all the things I ought to do and how to access information. I don’t require kindly advice – I simply can’t do it because I work full-time and just getting through the day is too tiring.
I have a parent and an Aspie sister and we form a good support group. We have other siblings, without Asperger’s. They are happy with their families, however I wish they would make some attempt to understand autism. Not for myself, but because they have children and their children are beginning to have children.
I have read books by other Aspies and trawled the internet forums. There is a lot of emphasis on young people with autism. I was never a young person with autism, as I had no idea I had it. I was a young person with problems. I am now a middle-aged woman learning for the first time to recognize my problems as Aspie problems and look for interventions. I have the problems, but there don’t seem to be any interventions available to people of my age.
So I review my life alone. No change there. There are problems I haven’t been able to rectify, but I know how to be kind to myself. When I get home, electric lights go off and I light candles. I burn oils because they calm me. I am learning how to slow down the chatter that runs through my head and I am looking for the key to a full night of sleep. I might never be at ease with you, but I am more at ease with myself.
I have plans that are based on who I am, rather than who I think I ought to be. I spent my first half century trying to fit in and now I have stopped. If anyone questions my oddness, I tell them it’s because I’m odd.”
This amazing story which so aptly reflects the maze of confusing emotions and experiences that so many women, who are diagnosed later in life with AS describe encountering along the rocky path toward self-awareness, understanding and acceptance , was written by “Manda” .
I spent years desperately seeking help for my daughter’s increasingly out of control behavior and, up until recently, found little to no help at all.
One of the biggest problems I’d faced in my efforts to garner any form of professional assistance for her is the genuine lack of belief that a child of her age could act out so violently or manipulatively without cause.
Now when I say ‘without cause’, what I actually mean is that all (bar one health care professional), 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 at times manipulative, abusive and aggressive, then it must be because I, as her mother am also manipulative, abusive and aggressive?
Or so the story goes.
Well, just for the record, I’m neither abusive or aggressive and probably couldn’t manipulate my way out of a paper bag if my life depended on it.
I’m the kind of person who’d much rather run from a fight than jump up and start one.
As a matter of fact, I’m an extremely quiet person and I love peace and harmony.
I’m also big on following rules, have a strong sense of social justice and adore having a daily routine in place.
For me, having a routine, affords me great peace of mind and comfort.
However with my daughter there is no such sense of routine possible.
She does not always enjoy the same thing today as she found comfort in yesterday.
She flies in a rage whenever she is asked to do anything, even if it’s something as simple as putting her clothes away.
Whenever this happens all bets are off and she can and will do anything to both express her anger and to avoid doing whatever it is that she has been asked to do.
Now I know that she has Asperger’s Syndrome, but so do I, and we are not the same when it comes to engaging in the basics of life.
Despite this, many involved in the assessment of Asperger’s insist that her ‘meltdowns’ are occurring as the result of her increasing inability to cope with a world that she’s struggling to comprehend.
From my point of view such explanations form a yes but…. no response.
I undoubtedly agree that she has AS, and that she finds the world overwhelming but I had already adapted many of the routines in our life to compensate for that,…. but,….. and here’s the big but,…… she can 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, or is unwilling to do, is understand and accept that other family members have rights and needs that need to be addressed 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 has AS but is she now so spoiled rotten because I’ve instinctively sought to compensate for that, that she’s suddenly forgotten how to appropriately behave whenever it suits her?
Have I been such a bad parent that by pandering to her needs, I’ve inadvertently created in her the expectation that she should always get her own way?
And does she even know any longer what her own way is because nothing and I 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.
Therefore, I can not stop her rages from occurring.
Nor can I bring her out of them.
Nothing it seems can bring 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.
So it’s not simply a matter of “I’ll misbehave until I get what I want” because she no longer even seems to want whatever it was that set her off in the first place.
There is simply no logic to it all and I doubt very firmly that she is either in control of, nor understands, why she’s doing what she’s doing.
I must even admit that there have been times when her 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 own way, then why won’t giving her what she wants calm her down?
“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.”
After reading this my jaw dropped, for this is exactly what I’d been seeing in my daughter’s odd set of behaviors.
One minute she’s my lovely girl, and she’s calm and rational, the next minute she’s blowing up at me over the loss of a hair tie (of which we have a jar full, all the same size and all the same color).
“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.”
And the pennies began to drop, and drop and drop.
The blog post I’d been reading then went on to say:
“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…. 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 finally could.
“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.”
“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.”
Got it in one.
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.
It’s called Pathological Demand Avoidance.
And it’s real and I am not alone in being subjected to it.
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.
I can only hope that in turn, by passing on your information, that this post may one day do the same for someone else.