Don’t water it down;
Don’t try to make it logical;
Don’t edit your own soul,
According to the fashion.
A few weeks ago I started a Facebook page and I must say that the entire process of doing so was an incredibly easy one.
At every stage along the way there where prompts reminding me of what needed to be done and even suggestions as to how to do them more easily.
Yet, whilst the mechanics of if have been remarkably easy, by far and away, the hardest part of starting up a Facebook page has been finding the right ways to express what it is exactly, you want your page to achieve.
Which in itself sounds fairly straight forward but in actual fact has proven to be far more difficult than I had at first thought.
So simply having an idea, whether it be specific or not, as to what you’d like your page to be about, still leaves you only half way there and this is because, even though you may have a clear concept of what it is you’d like to discuss, share or achieve on your page, others may have very different ideas as to how they perceive or wish to interact with your page.
For instance, even though my page is dedicated to primarily expressing and exploring the experiences of women with Asperger’s, it has been joined by several people who are either the parents of daughters with Asperger’s Syndrome or the partners of someone with Asperger’s Syndrome.
This is fine by me and for the most part I applaud parents for being open enough to listen too and learn from, where relevant, the experiences of women who have been in their children’s shoes, but, there are times when either I myself, or someone else, will share a post or a comment, that whilst not designed to hurt the feelings of non-Asperger’s women or parents, never the less, becomes perceived as doing so.
In such cases, the negative comments made by those who feel slighted, often effectively shuts down any and all further discussion surrounding whatever the topic of the post may have been.
This remains an issue that I am unsure how to confront, as even those people who run Facebook pages that have taken the time to make it very clear that they are designed first and foremost for a specific purpose, still find themselves in the predicament of having to try and clear up other people’s misconceptions of their comments or posts.
It seems that no matter what you do you can never please everyone, yet I’m still far from convinced that this fact alone means that one should settle for the potential of offending everyone either.
Another issue that has become somewhat of a quandary to me is the way in which “likes” for particular posts are being both attributed and distributed by Facebook.
For instance, running a much smaller page on Facebook I’ve found that often the bigger pages will pick up on one of my posts and “share” it on their own pages.
Now I don’t mind this happening at all, after all the aim is to spread awareness, and when it first began happening I thought it was a good thing as it was providing my page with exposure.
However this turns out to be less the case because in the process of the bigger pages doing so, the “likes” for whatever post they’ve chosen to “share” end up becoming attributed to their page’s alone.
This means that although it’s may be my post, from my page, that people may be “liking”, the fact that it is being distributed on a larger page means that those “likes” never make it back to or become attributed to, my page.
Normally this wouldn’t be so much of a problem, however, the way in which Facebook chooses to promote ‘not for profit pages’ makes it so, as the capacity of any such page to reach new members , depends entirely upon the amount of “likes” it receives.
The more “likes” a page receives, the bigger the page becomes and the size of the page decides how high up on the list of recommended pages, it will appear on Facebook.
The higher up the list a page appears, the more likely it is that it will continue to attract new members and therefore grow.
So, under this system, if bigger pages continue to be the sole beneficiaries of the “likes” they receive for “sharing” smaller pages posts, then effectively the bigger pages will continue to boom and the smaller pages will continue to remain just that, small.
This to me sets up a kind of dog eat dog system of promotion, which is something to bear in mind and be prepared for, if you are thinking of starting up a Facebook Page.
So although Facebook makes it incredibly easy to start your own Facebook Page, these are just some of the issues associated with starting up and running a Facebook page that you need to be aware of.
In the end, whether or not you choose to start-up a Facebook page, may well all come down to a matter of deciding what it is you want to achieve and whether or not that goal can best be achieved via Facebook.
When I think of my grandmother, I remember a woman who was very set in her ways, very regimented and extremely routine based.
As an avid gardener, she could always be found, out in her field of flowers, and when I say always, I mean always, as in each and every day, come rain, hail or sun blistering heat so hot that it could give a person sun stroke.
Yet despite her love of being in the great outdoors, she rarely left the comfortable familiarity of her own land.
If anything had to be gathered in from the outside world, such as groceries, she’d write a list and send my grandfather out to fetch them.
As a child, I had assumed that everybody’s grandmother’s behaved in this way and that older women simply did not like having to be bothered with such tasks.
It is only now as an adult, that I am able to look back and wonder whether or not her actions were driven by a strong inner need for familiarity, routine and the desire to avoid non-essential social contact.
I can’t help wonder how such a conversation between the two of us may have gone and whether or not we would have found our much-needed piece of common ground, upon which we could have stood together, while gazing out at all of her beloved flowers.
I think it’s interesting that many of the articles I’ve read all state, in one way or another, that girls and women on the Autism Spectrum are hard to diagnose because they “mask” their symptoms.
Yet when I look back on my life I don’t see any evidence that I “masked” any of my symptoms at all.
In fact, more often than not, my symptoms/differences were repeatedly pointed out to me and criticized by others.
So what I tend to see, when I look back, is the exact opposite of the claims made by others that women and girls “mask” their differences.
All throughout my childhood there is clear evidence that although those around me knew that I was ‘different’, no-one was prepared enough to take any steps toward understanding either how or why my behaviors were so different to those of the children around me.
So for me, I find the statement that girls/women on the Autism Spectrum “mask” their ‘differences’ to be both a very misleading and a potentially harmful one.
One that in a round – about kind of way, ends up placing the blame for the lack of awareness regarding females with Autism, right back at our own feminine feet.
After all, we were the tricky ones who were supposedly “masking” our own behavior’s in order to evade detection.
Is it just me or is anyone else beginning to feel slightly perplexed by the repetition of this very insidious form of circular reasoning?
Are you experiencing:
“Crippling social anxiety?
Trouble making casual friends?
You’re not alone ….
There’s a chance you may be among the gifted few,
Blessed with expansion-pack wiring.
Don’t suffer in silence ,
Explore the wonders of Asperger’s.
Find your tribe,
You’ll be relieved you did.”
Words by Kami Bee.
Yet we are not twisted and we are not bad….
We are all alone because too few have bothered to try and understand us……
So few in fact that we are often told that we need ‘fixing’…..
Yet deep inside we know that we’re not broken….
We are merely different….
Given all of that….
It’s little wonder….
That we have our moments,
Of feeling all alone,
Ever since I shared the article written by Maia Szalavitz in 2009 on the Markram’s Intense World Theory of Autism, which makes the claim that those with Autism do not suffer from a lack of empathy but rather an overabundance of it, I have been inundated with responses from people whose life experiences resonate deeply with the understanding that they, as individuals on the Autism Spectrum, regularly over empathize with the emotions of others.
However, at the same time, I’ve also received numerous messages from readers who disagree adamantly with the very concept that people on the Autism Spectrum are capable of feeling empathy.
To this end I’ve been accused of such things as spreading “harmful misinformation” by “promoting a theory that is irrelevant, old and misleading”.
In response to these negative accusations I chose to remove the post for a while in order to allow myself enough time to take a step back and genuinely consider the validity of the claims being made against me.
Yet within less than an hour of removing the post I began receiving messages from people wanting to know where the post had gone and requesting that I post it back up as they felt that the understanding that people with Autism not only feel empathy but experience high levels of empathy towards others, was an extremely important one.
And I have to say, that at the end of the day ( and in the beginning and middle bits too) I agree far more with those who believe that righting, even just one of the many misunderstandings that surround the experiences of those living with Autism, is more important to me than the harsh words and judgements of those who disagree with either the premises behind the Intense World Theory or the implications that the theory holds for providing a greater understanding of those with Autism.
And when it comes right down to it, the act of sharing what I consider to be valuable and worthwhile information is more important to me than the criticism I’ve received for doing so.
So let me make it clear, personally I do not care with the theory is called or how old it is.
What I do care about is exposing the simple truth that people on the Autism Spectrum can, and often do, feel an over-abundance of empathy towards others.
And that often these extreme feelings of empathy can be so intense for people on the Spectrum that they generate in them the need to remove themselves from people and situations, including loved ones and family members, in order to cope.
In fact, I care more deeply that the actions which were once mislabeled and misunderstood by so many, as being signs of aloofness, detachment or a lack of empathy, are beginning to be redressed and therefore more properly understood as actions that arise as a result of being able to feel too much empathy, rather than not enough of it, to pull the post.
So those of you who wish to accuse me of “spreading harmful misinformation” or of “promoting old dead theories” are just going to have to color me bad because both the post and the very important message of understanding that it’s offering to so many in the here and now, are both staying.
“I wrote this for an all-girls group I am part of and thought that maybe I should share it and see what others have to say. Be nice ok. It took a lot for me to be able to talk about this.”
“Autism and Asperger’s displays itself very differently in woman than it does in men.
Most Autistic traits in males are very obvious, they don’t hide them and it’s very clear.
With women, we actually subconsciously try to hide it, it’s in the female nature to fit in; you may find you mimic your female friends in different ways.
For example, you might copy certain phrases they use, figures of speech, accents, physical stances and behavioural habits.
I, for one, used to copy my friends self-harming and it wasn’t to get attention, it was because I assumed this was normal behaviour for other girls.
When I was in primary school I tried to fit in by soaking up every bit of knowledge about makeup and hair that I could because at the age of 7 years old I thought this would stop girls from picking on me.
It didn’t work; it made them hate me because I knew more than they did.
I ended up hanging out with all the boys, playing rugby, play fighting and developing a very masculine attitude towards sports.
I LOVED running, I ADORED horse riding and even at a young age I felt that the ache that you get after a long trek on horseback, was the best thing in the world.
Even at the age of 11 I had this attitude, hell I even secretly loved the smell of sweat.
I also loved the smells at my friend’s farm because it smelt right.
I was still trying to fit in with the girls though, so I started wearing a bra to get noticed and saying that I had developed a crush on the boys, even though I hadn’t.
To me, boys were just there to be jumped on and knocked around and generally enjoy a good old rough n tumble with.
When my only female friend and best friend moved down to England I changed.
I wouldn’t speak to anyone because I felt as though someone had wrenched something out of my chest.
The girls who picked on me realized that I was extremely vulnerable so they took me under their wings and then threw me in the dirt for fun.
So I turned to books and the Harry Potter books saved my life.
I would sit and read ALL the time, hell I learned to walk while reading, write and kick a ball all at once.
I had a talent for reading and literature at school and was a total bookworm but I couldn’t do maths if my life depended on it. This made school very difficult for me.
In primary school I had a very nasty, abusive teacher and this together with the fact that I lost all my grandparents in the space of 5 months, meant that I fell behind in my school work.
I was moved to the Secondary School in the next village because of how horrendous the bullying of me had become.
The school there was filled with kids who were mostly brought up out in the middle of nowhere, on farms, so I got on amazingly with them!
Unfortunately at this point I had stopped horse riding due to my parents using it against me to get me to do simple things like cleaning.
I got bullied for a while during my first year there but I soon learned to stick up for myself, realizing the teachers here would actually do something (the head in primary school ‘solved’ bullying with a group hug and when physical contact scares the shit out of you anyway, it does not help) and the teachers didn’t look down at you.
In second year I had a fantastic English teacher who figured out I wouldn’t do homework but if she gave me clear instructions during class and made it interesting, I could get it done in 30 minutes flat.
She was, and still is, my favorite teacher. She was feared by most students but I adored her, she understood me.
I still struggled with maths and it caused me many issues.
I adored art, I wasn’t good at it but I loved it, especially my friends artwork because it was beautiful and I liked to just sit and look at the seniors artwork because it never failed to amuse me in one way or another.
I didn’t do well in P.E. because it meant someone was telling me how to do sport and that someone would be watching my every move, but I was exceedingly good at skiing, badminton and running.
If a teacher suddenly changed what we were going to be doing, it often ended in a full-scale meltdown because it made me uncomfortable.
By this time, my parents had noticed that I was becoming withdrawn, depressed and generally not my usual self.
So, I was being looked at for depression but I had too many happy moments to be ‘properly depressed’. Then I was being looked at for Bipolar disorder and this is when things got really interesting.
The woman seeing me about this was puzzled, I showed all the right symptoms but in her eyes something didn’t match, there was something missing.
Sure, I had insane mood swings but I also had social anxiety issues, if I got stressed I became physically ill (usually cystitis).
I was exceedingly intelligent but the knowledge was there in dribs and drabs, it never encompassed the whole of anything, rather it was filled by all of the peculiar facts I clung to simply because I liked them.
I acted like a sponge for knowledge, though remembering that knowledge was a huge issue.
I showed signs of dyspraxia (Sp) and dyscalculia (sp) but not enough to make a definite diagnosis.
Then my little brother got diagnosed with Autism and they asked about me, mum said she had a light bulb moment and it all made sense.
Never getting over losing my one good friend, being easily distracted, not being able to handle large social groups, loud noises sending me into over drive and causing catastrophic melt downs, too much noise leaving me seemingly deaf, being scared of touch unless it’s invited by me, loving soft fluffy things, being overly sensitive to smells but not minding natural smells like body odour and farm smells, finding comfort in the company of animals more than people.
Well, the list goes on but it’s scarily hard to describe to a stranger what you are like when it takes 17 years before your problems are even noticed.
Simple, males with autism have very prominent signs because the ‘hierarchy’ within men isn’t so severe.
Us women will do almost anything to fit in and to try to seem normal, so the girls with autism or Asperger’s strive to be like the others, to be ‘normal’, so it masks the majority of the signs.
They used to think Autism was less common in women but recently they’ve realized that the problem actually is that girls get misdiagnosed.
They get accused of being Bipolar/Manic Depressive or having attention deficit disorders or of just being plain weird.
You are NOT weird if you have an Autism Spectrum Disorder/Condition, you are different, you see the world differently and you have an AMAZING eye for truth.
You take things literally a lot, can’t tell the difference between sarcasm or being bullied at times, sure but you know what?
All you want is the truth; you strive for people to be honest, you NEED control, perfection and order or it stresses you out.
Nothing wrong with that.
It makes you YOU.
There are many other ‘disorders’ that pile on after you find out you have this, please don’t worry, its part and parcel of this amazing gift you have.
You may be ‘weird’ and you may feel like you don’t excel in the things you want to excel in but do you know why? It’s because people like us, have a tendency to be truly talented at something amazing.
You get autistic people who struggled with literature and creativity but are amazing at science, maths and things really involving raw intelligence.
Then there are autistic kids (like myself) that struggle with raw intelligence but adore literature, writing and using your creativity in art or music.
I still haven’t accepted myself for who I am because when I got diagnosed, I lost all of my friends.
I found out the hard way that they were judgmental and easily lead by a bully.
You may feel weird but I promise you, you are an amazing person.
You have such a unique way of seeing the world around you; you don’t need to fit in with that crowd of popular kids because they are false.
You like the truth, you need it.
I know this seems like a ramble but it’s how my mind works. Due to having Asperger’s I don’t really answer questions straight up, I ‘waffle on’, as one of my other English teachers was fond of saying to me.
But please, never be ashamed of having Asperger’s or Autism or of being on the spectrum at all.
If you have family members who are on the spectrum, please respect them; be honest with them because all they want is the truth.
Don’t make promises you can’t keep, if you break a promise to someone on the spectrum, it’s kind of like you broke the law.
Respect that we can be very edgy about our ‘personal bubbles’ at times while at others you might end up with us scrambling onto your lap for a cuddle simply because we are cold and you happen to be warm and squishy.
Respect that we don’t like loud noises, we can’t concentrate on more than one sound like most people can and it will confuse us.
Respect that we may have habits like, rocking, spinning, jumping, dancing, humming, snapping fingers and making silly noises.
We don’t mean to be annoying but when we get excited or depressed these things calm us down or express our need to show you we are excited.
Respect that if you have something colourful and pretty we might take it from you or stare at it because we have become entranced by its beauty.
Respect that if you take us outside where there are flowers we will insist on running through them, touching them and we will get upset if you take us away.
Respect that if you smell good we might sit and sniff your hair or we might stare at our food simply because it smells amazing.
Respect that we might not eat something because it looks ‘funny’ or its texture is ‘squelchy’ or just plain wrong.
Sure we can be as weird as all get out, but I can promise you this, we will have you in stitches laughing at our oddities and tendency to turn around and whisper rather loudly “look at that woman’s make up! She looks like a walking talking orange!” or “You smell funny” and then walk off like nothing happened.
Don’t be offended, we don’t mean to be nasty; we are just honest and a little strange.
I hope this adds a little insight.
I hope you all read this and find it helpful or that it at least puts a smile on your face.
“DISCLAIMER: This is written from my point of view as a girl with Asperger’s Syndrome If you are a teenage girl please DO NOT SELF DIAGNOSE all of a sudden based on this information, please. It’s the worst thing you can do; having issues doesn’t make you cool.”
You can view Marnie’s original post and more of her amazing writing at: http://vampirefreaks.com/journal_comment.php?entry=8355153&fb_source=message http://www.wattpad.com/28148017-autism-apergers-awareness-for-woman
How is it that we can be so gifted,
Yet so challenged at the same time?
We see the details others don’t,
Yet can’t seem to find the right words
Or ever be sure of what to say,
Sometimes, because of this,
Life becomes nothing but a struggle.
Whether it’s a struggle to physically speak,
Or a struggle to interact,
It takes painstaking work for many of us,
To get even halfway close,
To appearing “normal.”
Sometimes when this struggle drains us,
Others judge us for being weak.
They tell us to just “toughen up”,
“To get over it”,
And everything will be Okay.
It’s as if the better we do,
The more people forget,
Or don’t register,
How ironic it is,
That we should become the victims,
Of our own success.
This amazing letter was written by a woman who suspected that she may be on the Autism Spectrum, prior to meeting her psychologist for the first time. Here’s what she had to say.
“Dear Dr L—
I hope in this letter I can give you a more thorough explanation of how I feel, the way these feelings affect me and why I think a diagnosis and continued support would be beneficial to me.
I have an over-active mind and experience high anxiety.
I constantly see things at multiple levels, including thinking processes and analyse my existence, the meaning of life, the meaning of everything continually.
Nothing is taken for granted, simplified, or easy.
Everything is complex.
Being serious and matter-of-fact has caused me many problems and I have been told on numerous occasions that I come across as rude and/or abrupt.
Every year my work progress development report says that I would benefit from some kind of people management course, which to date has never happened.
Making friends or developing relationships has always been and still is very difficult for me.
As a child, I was convinced that I was away the day everyone decided who they would be friends with.
This has always been an area that has caused me confusion.
I still have a constant feeling that I am misplaced, isolated, overwhelmed, and have been plopped down in the wrong universe.
If I had friends, my tendency was to blindly follow wherever they went and to escape my own identity by taking on theirs.
I dressed like them, spoke like and adapted myself to his/her likes and dislikes.
I have had a couple of “friends” in my life for a very long time but I mostly talk to them online as I do not like leaving the comfort of my safe environment.
Even with people I know well I do not like being in their houses as my anxiety levels hit the roof.
I get agitated and uncomfortable not knowing what to say, what to do, if I’ve over stayed my welcome or would it be rude if I left now, have I stayed long enough.
This leads to seriously high stress levels, nasty thoughts in my head, sweating, increased heart rate and a sudden urgency to flee.
When I know I don’t have to be anywhere, talk to anyone, answer any calls, or leave the house, I can take a deep breath and relax.
Even something as simple as a self-imposed obligation, such as leaving the house to walk the dog can cause extreme anxiety.
It’s more than just going out into society; it’s all the steps that are involved in leaving–all the rules, routines, and norms.
Choices can be overwhelming: what to wear, to shower or not, what to eat, what time to be back, how to organize time, how to act outside the house….all these thoughts can pop up.
I struggle when I’m out with sounds, textures, smells and tastes, which in turn creates a sense of generalized anxiety and/or the sense that I am always unsafe or in pending danger, particularly in crowded public places.
There have been times in crowded places like shops where the confusion and anxiety has gotten so high that I have had to just say “I need to go” and have walked out and straight to the car to gather my thoughts and calm down.
Counting, categorizing, organizing, rearranging, numbers brings me some ease and has been with me ever since I can remember.
Over the years I have sought out answers as to why I seemed to see the world differently than others, only to be told I’m an attention seeker, paranoid, hypochondriac, or too focused on diagnoses and labels.
My personhood was challenged on the sole basis that I “knew” I was different but couldn’t prove it to the world.
My personhood was further oppressed as I attempted to be and act like someone I’m not.
I have children diagnosed with ASD and am concerned that I am not doing the best for them due to my own inhibitions.
Still I question my place in the world, even more so now that my son has a diagnosis of ASD and I see so many similarities between what he’s going through and my own personal experiences.
How can I help them to adapt and learn when I don’t know myself how to deal with the situations that are causing them the most problems?
I would really benefit from help in learning to deal with my issues.
Now that I understand the Autism Spectrum and am convinced I am well within the spectrum, the hope is that I will get support and advice can benefit me and allow me to help my children.
My hope is that through diagnosis and the support that should follow; I will be able to work on the areas that I lack the necessary skills for dealing with society, in.
If I can get help for myself it will put me in a better position to guide and help my children.
Apologies for the lengthy explanation, I hope I have given you the information you were seeking. If not please don’t hesitate to contact me.
Amanda is sharing this letter in the hope that it may help other woman avoid some of the pain and confusion she’s experienced in her own life. Thank you so much for your willingness to help others Amanda <3