Autism – What will I gain from being diagnosed later in life? It won’t change anything for me, so why should I bother?”

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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.

Autism – We Share A Label – Not A Life

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Each and every person lives a life that is unique to them. Therefore, even though we may all experience life with Asperger’s / Autism, it does not automatically follow that we also experience every  aspect of  ‘life’ or Autism, or even ‘life with Autism,  in exactly the same ways.

One person’s lived experience, knowledge and truth, is exactly that.

One person’s.

We are all born into different circumstances.

We all have different experiences, learn different lessons and gleam different aspects of knowledge and truth, based on these experiences.

Sharing similar ways of interpreting or understanding the world around us, is not the same as ‘living the same life.’

We share a diagnostic label, not a life.

Please recognize and respect this fact and stop trying to ascribe the understandings, beliefs and personal preferences of one individual with Autism, to all individuals with Autism.

We are not mirror images of each other.

We are all different.

And we deserve to have our differences understood and treated with respect because our differences matter.

For example, the experiences of an adult female, diagnosed later in life, will be very different to those of an adult male, diagnosed early in life.

Whilst one may have grown up feeling ‘lost’, ‘alone’ or made to feel ashamed of her differences, the other may have grown up with all the benefits of self-understanding, self-awareness and being encouraged to take pride in his ‘different-ness’.

While each individual’s experience needs to be understood as being equally valid interpretations  and expressions of what it is to live an Autistic life, they also equally need to be understood as being validly different.

The act of preferencing one set of experiences over the other, leads to the negation of not just one narrative, but to the negation all narratives that do not fit neatly within the confines of that which becomes the preferred story of the‘ Autistic experience’.

Just to be clear on this, there is no correct way to experience Autism.

There are instead, many equally valid, equally real and equally genuine ways to experience Autism.

Yet some within our society continuously seek to preference and promote only one particular version of Autistic life.

We cannot and should not allow either ourselves or others, to fall into the trap of ‘negating’ the many difference to be found within in the Autistic experience, simply because it’s being presented to us under the guise of ‘creating Autism awareness.

All Autistic experiences are valid regardless of age, gender or socio-cultural and economic influences.

To believe that any one experience is any more important or worthwhile than another is to perpetuate both the myth that there is a ‘correct way’ to experience Autism, and that all ‘Autistic people are the same.’

We’re not.

We share a diagnostic label.

Not a life.

Autism – Absurdities and Atrocities

Artwork by JudasArt

Artwork by JudasArt

Voltaire once wrote: “ Those who can induce you to believe in absurdities, can induce you to commit atrocities.”

Nowhere is this statement more relevant than when looking at the many perceptions of the causes of Autism.

For example, consider the following two statements regarding Autism.

  • People with Autism experience the world differently due to the impacts of a disease process. This disease process can be cured. Therefore Autism is a condition that we, as a society, have a duty to either eradicate or overcome.

  • People with Autism experience the world differently due to neurological variances that are hard-wired within them at birth. Autism is not the result of a disease process which can be cured. Therefore Autism is an aspect of life that we, as a society, have a duty to seek to understand, respect and accommodate.

Which of the above statements do you believe to be the least absurd?

If you agree that the first statement is the least absurd and therefore, (in your eyes, most likely to be true), then chances are that you will do and try almost anything to either cure or rid yourself or your child of Autism.

The past 50 years have shown that attempts to cure “the autism” out of a child or an adult have had disastrous results.

Yet attempts to cure “the autism” out of a child or adult continue. Some involve relatively harmless and repetitive therapies that do appear to help assimilation.

However, some attempts involve subjecting children and adults with Autism to debilitating, humiliating and ultimately mentally and physically harmful forms of abuse.

Such as forcing persons with Autism to drink bleach, delivering painful punishments, such as kicking, punching, whipping or starvation, to persons with Autism for displaying undesirable behaviors or subjecting them to intense isolation and deprivation of liberty by locking them in rooms or cages.

All of which should be considered crimes against humanity and therefore seen as atrocities.

If you agree that the second statement  is the least absurd and therefore, ( in your eyes), the most likely to be true, then chances are that you will do and try everything you can to be better understand and accommodate for either your own or your child’s Autism.

Over the last 50 years the voices of those with Autism have continuously cried out for understanding and acceptance.

A key aspect of accepting the potential that children and adults with Autism process the world differently involves making the attempt to understand what those differences are, how they impact the individual with Autism and then accommodating for them respectfully.

Accepting and making accommodations for adults and children with Autism , whether that be providing them with safe, quiet places , pressure blankets, clothing without tags, or specialized educational programs, is both respectful and beneficial.

The practice of providing acceptance, respect and accommodation breaks no laws, perpetrates no crimes against humanity and therefore does not induce anyone to commit atrocities.

I prefer statement 2.

How about you?

P.S  I am aware that some may argue the possibility of a third statement in which Autism could be considered a curable disease whose sufferers should be treated with both consideration and respect whilst they are experiencing its disease effects. However, the propensity of those who support statement 1 toward the overall aim of ‘curing autism’ places many adults with Autism, who not only accept their differences but are increasingly proud of them, at odds with such beliefs.

Women with Autism – Beware we wear masks (well supposedly anyway).

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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?

 

Do you experience anxiety, extreme shyness or have trouble making friends?

 

Artwork by Jason Limon

Artwork by Jason Limon

Are you experiencing:

“Crippling social anxiety?

EXTREME shyness?

Trouble making casual friends?

Feeling isolated?  

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.

You are always welcome to come and join us at  WASP Women’s Asperger’s Syndrome Awareness Page to learn more. http://www.facebook.com/waspwantsyou

 

Autism/Asperger’s Awareness in Women – A Teenagers Perspective – Written by Marnie

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“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.

Go figure.

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.

And Why?

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.
Marnie”

“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

 

Women and Autism – How one woman’s letter to a psychologist finally helped her receive an ASD diagnosis after years of personal invalidation.

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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.

Yours sincerely

Amanda”

 

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