Autism – We Share A Label – Not A Life

1947840_743458935686043_57909901_n

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.

Acknowledging the Rights of Young Adults with Autism to Feel and Express Love

heart exploding abstract

Dear Support Services,

It has come to my attention that there’s an aspect of providing support for Young Adults with Autism that you clearly, as yet, do not fully comprehend.

So let me enlighten you.

Young Adults with Autism are first, and foremost, Young Adults.

This means that like all Young Adults everywhere on the face of this earth, they will be experiencing the same confusing hormones, feelings and emotions, that combine together to create the mystic soup called ‘Love’.

Young Adults with Autism are no different to anyone else.

They wish to both give love and to receive love in return.

There is nothing, what so ever, wrong, with their desire to do so.

The only area of ‘wrongness’ in this situation can be found within the barriers, rules and regulations support organizations try to put in place, specifically to ‘curtail’, the very normal responses of a group of Young Adults who all spend time with each other on a daily basis.

Young Adults with Autism, or indeed Young Adults with any form of recognized ‘disability’, are not criminals serving ‘hard time’ for crimes against humanity.

They are Young Adults and just like every other Young Adult in the world, they are simply trying to navigate their way through life.

Their desires to love and be loved do not constitute criminal offenses.

So why do so many support organizations display such an overwhelming propensity towards ‘revoking’, ‘denying’ or ‘banning’ the very human rights of the people they are supposed to be supporting?

And who decided that support organizations should have the capacity to ‘ban’ any and all expressions of a Young Adults need to feel loved?

It is clear to me that such antiquated ‘fear mongering’ in the form of ‘rules that seek to deny Young Adults the right to behave like Young Adults,’ actually do nothing to support the growing needs of the first en mass wave of Young Autistic Adults now entering our society.

For this reason it is crucial that we speak up.

We cannot, either as a society or as individuals, encourage the belief in our Young Adults that they have the same rights as everyone else whilst allowing support agencies to continue to put strategies in place aimed at negating our Young Adults rights to express Love.

It’s up to us to speak up.

To say to those who are working within Support Agencies:

Please stop trying to ‘legislate against’, ‘contain’, ‘remove’, ‘ban’ or in any other way stymie or deny the rights of Young Adults with Autism to ‘Fall in Love’, ‘date’ or ‘fraternize’ with each other, within your organizations.

It is not your job to ‘prevent’, ‘curb’ or ‘deny’ Young Adults with Autism, their very human right to engage in, or experiment with, their desires to experience romantic Love.

It is, however, your job to provide them with the additional supports they require in order to be able to spread their wings and fly independently within every possible area of their lives.

And not just those areas of their lives that support agency staff feel comfortable in acknowledging.

Young Adults with Autism hold the capacity and the desire to both love and be loved.

Isn’t it time we demanded that our support services acknowledge this truth and work accordingly to both accommodate and support our Young Adults with Autism in every aspect of their lives.

Is life easier for Autistic Women than it is for Autistic Men?

15079_10151651506248531_2092842529_n

I’ve just read yet another post stating that women with Autism have it easier than men with Autism because they are better at ‘masking’ their behaviors.

This is a gross over statement.

Not all women with Autism are brilliant at ‘mimicking’ others.

Not all women with Autism engage in ‘masking’ behaviors.

The continued, unquestioning, promotion and legitimization of the notion that all women with Autism willingly comply with such stereotypical codes of behavior does us no favors at all.

If anything, one could argue that such ideas do little more than create another rod for our backs as they are fast being employed as yet another diagnostic benchmark to determine whether or not a woman has Autism.

The problem with these ideas is that they avoid or sidestep the simple truth that women were not allowed to express feelings of difference in any positive, meaningful way, prior to the understanding that women could experience High Functioning Autism (Asperger’s Syndrome) right along side men.

In other words, prior to the discovery that women could have High Functioning Autism, Autistic women had to ‘pretend to be normal’ or else risk being labelled with some catastrophic mental health disorder and possibly locked away.

Given the same choices today, pretend to be normal or be prepared to be locked away, most women would choose to pretend.

However, the need to pretend no longer exists and it no longer exists because psychology has finally caught up with our current day reality, and in our current day reality the need to pretend no longer exists because we’re no longer going to be locked up simply for being female and different.

It’s a horribly circular argument, but  the point is that in the past women with Autism may have had a  perfectly logical rationale for pretending to be normal.

Today that same rationale no longer applies.

Many of us don’t feel the desire to ‘mask’ or ‘conceal’ our behaviors.

Some of us have rarely, if ever, intentionally ‘masked’ our opinions or feelings simply for the sake of wanting to appear as though we ‘fit in’.

It is true that sometimes I will choose to remain silent on a topic, but that’s about as close as I get to engaging with, what some might call, ‘masking behavior’.

The strange thing is, that whenever I deliberately choose to remain silent, I’m not doing so to fit in.

I’m usually doing so out of respect for other people’s feelings.

For example, if person A is talking about a topic that I recognize they have a strong emotional connection too, then even if I do not agree with, or fully understand their point of view, I will choose not to say, as I would if we were discussing a topic to which they had no emotional bond, ‘I don’t agree with you.’ Or ‘you are wrong’.

I may still be thinking it, but I will not express it , as to do so would be to challenge, not just their logic, but also their emotional responses to the topic.

I, like most people, do not like having my emotional responses to things challenged.

It hurts.

Given that I know that it hurts, I choose in-turn, not to hurt another by engaging in an action that I know hurts me.

This to my mind, does not provide evidence that I am engaging in ‘masking’ behavior.

To me it indicates that I have the ability to show empathy, respect and compassion for another person.

The fact that I am not so ‘mind blind’ that I’m unable to consider another person’s feelings, regardless of whether or not I share their opinions, does not mean that I am engaging in ‘masking behavior’.

To me, the act of showing compassion is not, in and of itself, ‘masking behavior’.

It’s human behavior.

And to be perfectly frank, the ability to show compassion does not make it any easier for me to understand why people choose to cling to faulty logic in times of need.

Nor does it explain to me the reasons why people become so tied up in their emotions that they fail to follow clear and logical thought process during the very times that they most need to.

So in reality, I’m still just as confused by people’s lack of logic, or their inability to apply logic when it’s most needed, as males with Autism are.

The only potential difference that gender may make in this circumstance is that, as a female, I am sensitive to the prospect of causing emotional harm to others.

This is because I know exactly what it feels like to be on the receiving end of anothers thoughtless ‘emotional harm’.

So too, do the thousands of women who’ve endured the ‘emotional harm’ that the denial of the truth that women, as well as men, experience Autism, has caused them.

Is life any easier for women with Autism than it is for men?

No, it’s not easier but it is getting better.

It’s getting better because we no longer have to pretend to be anyone or anything other than who and how, we are.

Understanding the Calculus of Communication – Counting the Cost of Getting Lost.

chalk_outline_by_madam_top_hat-

Do find yourself becoming bored when others talk excitedly about ‘sales’, ‘the latest fashion trends’, ‘bargain basement make up prices’ or ‘who said what about whom’?

Do you often feel like you’re the only person in the world who doesn’t understand why family, friends and large pockets of society become excited over minor events or inconsequential trends?

Do group conversations confuse you?

Do you find yourself still pondering the first topic of conversation while those around you move on to talk about other things?

Do you either miss or misinterpret sudden changes in tone of voice, facial expression or body language?

Do you sometimes feel as if you are always the last person in the room to get the joke? Especially if it’s illogical or cruelty dressed as humor?

If you’ve ever felt, even one of these things, then perhaps you’ll be able to understand (or calculate) just how confusing and disparaging social interactions can be for someone with Asperger’s Syndrome.

For many years I used to tell others that I had a low ‘social IQ’.

The problem with trying to explain my social difficulties in such a way were two-fold; either people wouldn’t understand the concept of having a ‘low social IQ’ or they’d assume that I’d tried to make some kind of awkward joke.

I’d often wonder why it was that people would believe that I’d waste my time making fun of, what for me, was (and still is) a very real difficulty.

This inability to stay afloat in social situations, despite working so hard internally to do so, alongside the social expectation that I should always be seen to be able to do so (pretend), or risk rejection as an inept social outcast, still bugs me.

Sometimes it felt as if everyone else has been born with some innate social rule book hardwired into their brains.

Everyone that is, except me.

Yet, whenever I’ve analyzed these feelings of ‘being different’ of not knowing the rules, I’ve found that the analogy is not entirely true.

Because, if the ability to communicate socially were simply just a matter of learning the right rules, which is a task that I am usually good at, then I’d be able to learn those rules, internalize them and move on in much the same way that I’d learned and internalized academic concepts.

Therefore, social interactions are not just about knowing the rules or knowing when to nod in all the right places or learning when to send forth a smile or scatter a frown here or there.

numbersThey appeared to be both so much more complex to me and yet somehow so much easier to navigate, than understanding calculus is, to others.

So I decided to draw on the calculus analogy when trying to explain just how difficult I found social interactions, particularly in group settings, to my family and friends.

I’d ask them if they’ve ever thought of math whizzes as people who have somehow been born with an internal calculator.

One that not only instantly enabled them to recognize what sort of math problem they’re dealing with but also simultaneously provided them with exactly the right formula to apply in order to solve any given mathematical equation within seconds?

Then I’d ask them to imagine how they’d feel if they suddenly found themselves sitting in a room full of math whizzes who are all busily going about their day, solving their respective math problems and chatting to each other about the life of Pi?

How would they feel about their own math skills if they were to find themselves in such a situation?

Would they try and convince themselves that they are just as good at maths as every math whiz in that room or would they admit that they feel like they’re in the wrong room and there’s no way they could keep up?

Most people, I’ve found, seem to be able to relate to the experience of feeling lost, if not awkwardly confused, or completely disinterested in performing or talking about the joys of mathematics.

So, once they’d admitted that they’d feel awkward, lost or disinterested, I’d tell them that I find social interactions, especially in group settings, every bit as difficult as they’d find it to be in a room full of math whizzes, because to me, trying to keep up with the flow of their ideas, as well as trying to interpret the tone of their voice and the meaning of their facial expressions simultaneously, was just like being expected to suddenly solve a complex mathematical equation whilst discussing Pi.

It’s hard work for me.

I can’t instantly look at someone who’s smiling and know if it’s a real smile or a false smile.

I have to work it out.

In just the same way that most people admit they’d be bored witless and unable to participate if they were surrounded by people who only wanted to talk about Pi, I can’t see the point of participating in a conversation that I can’t understand or view as boring.

When it comes to social interactions, particularly conversations, I don’t have that internal social rule book, so to me conversations can be hard work.

As much hard work as it would be for most people to sit a spot calculus exam.

Yet it seems, everyone else still has the advantage because only one of us is being constantly expected to be delighted with both the prospect and the reality of having to sit that spot calculus exam every single day.

Social communication obviously isn’t as difficult as engaging with calculus to most people, if it were; they wouldn’t continue to do it.

Nor would they expect others to treat them differently simply because they lacked the ability to fully understand, appreciate or enjoy chatting about, calculus.

And yet……..

Asperger’s Syndrome in Women – Different not less

Art by Igor Mudrov

Art by Igor Mudrov

I have noticed that whenever women with Asperger’s Syndrome try to speak up and share the fact that they often experience greater levels of discrimination,

medically, in terms of receiving an accurate diagnosis at an early age and socially, in terms of having their diagnosis recognized and understood by others,

they are also often accused of suggesting that men with Asperger’s Syndrome must therefore, somehow,  have an easier life.

This is simply not the case and it irks me so that women with AS,

who seek simply to share their truths,

are so consistently having the validity of the expression of their own personal experiences

twisted and therefore,

disregarded in such a way.

Women with Asperger’s Syndrome  – Different not Less.

 

As I see it – Society treats males with Aspergers Syndrome differently to females with Aspergers Syndrome

Art work by Elena Vizeskya

Art work by Elena Vizeskya

I know there are many male Aspies who feel that there are no differences between their experiences of Asperger’s Syndrome and women’s experiences of Asperger’s Syndrome.

On one level I understand this realm of thought because essentially, if you’re only talking about the way in which we experience being socially overwhelmed, yet at the same time feel socially isolated, or being constantly misunderstood, or socially awkward and confused, then, yes these feelings/experiences are the same.

However, where they differ, is the way in which these experiences are being both understood and accommodated for by others and the consequences of that.

In simple terms, women can never truly know what it feel like to experience all of the social expectations that being a male of the species involves just as males can never truly know what it feels like to experience all of the social expectations that being a female involves.

In most areas of life this male/female binary differentiation is understood, accepted and endlessly theorized over as to how it came about.

Yet somehow, when it comes to the experience of living a life with Asperger’s Syndrome within a society in which it is already well recognised that this gender division impacts on such things as financial outcomes, employment opportunities, and still in many areas of the world, civil rights, let alone personal subjective experiences, some still seem to insist that women with Asperger’s Syndrome must experience their Asperger’s Syndrome in the same ways that males do.

From my experience this is simply not true.

My brother, for example, has always been excused from attending family occasions, a friend’s party or any form of public gathering, without a word of criticism.

More often than not, other family members can be heard willingly offering up excuses for him. ‘Oh you know Al, that’s just the way he is. He’s never liked being around crowds (including being in a room with more than 4 family members at one time).

Yet, if I feel that I do not wish to or am unable to attend a family occasion, a friend’s party or any other form of public gathering to which I’ve been invited, I am bombarded by words of criticism.

‘Oh, she’s snubbing us’. ‘How rude of her not to bother to attend.’ ‘I suppose she thinks she’s too good to bother with us,’ or the good old ‘She’s always so disorganized’.

In this instance, both my brother and I may have the same reasons for not wanting to attend whatever it is we’ve been invited too, i.e., there will be too many people, too much noise or we’re feeling too personally overwhelmed to deal with a group of people we don’t know, or we’re afraid of being socially awkward – again, of we’re simply already worn out from having had to deal with other social occasions.

Yet despite the fact that we may choose not to attend these social gatherings for the same reasons, the judgements and criticisms of others towards us as individuals can be and are very different.

My brother doesn’t have to put up with being treated as if he has done something terribly wrong or highly offensive by others if h chooses not participate because of his Asperger’s.

Whereas I, on the other hand, due to my Asperger’s, am continuously being placed in a position in which my integrity as person and my loyalties as both a family member and a friend are constantly being questioned.

I believe that the only explanation for the disparity between the ways in which it’s seen as acceptable for my brother to avoid social gatherings, whilst I experience being berated for the same behavioral need to avoid social gatherings, is gender.

He’s a guy, therefore its okay for him to not always want to be social.

I am a gal, I’m supposed to live for social occasions, to enjoy them, to want nothing more than to celebrate a reason to get all glammed up and engage in chit-chat.

Wrong.

I don’t enjoy social occasions, I don’t want to have to get glammed up just to stand around and have to try too hard to make small talk with people I may or may not know.

I am as socially awkward as my brother,( who incidentally is also never expected to get whatever the male version of ‘glammed up’ is), yet these facts are constantly being ignored and I think they’re being ignored simply because I’m a woman with Asperger’s Syndrome and apparently women with AS are supposed to be able to cope.

We’re supposed to be able to successfully mimic the social niceties of others so well that we can “pass ourselves off as being normal”.

And more than that, we’re also supposed to want to “pass as normal”.

It’s what we live for.

It’s what we take pride in.

Apparently there is no greater compliment for a woman with Asperger’s Syndrome than – “oh, I never would have thought there was anything ‘wrong/different’ about you. You don’t look/act like some with Asperger’s Syndrome.”

Wrong.

When it comes to Asperger’s Syndrome and gender, let me tell you that I hold as little interest in having to play the social game of ‘passing as normal’, as my brother has.

The key difference between us on this score is that only one of us is being accepted for the social differences/difficulties that our Asperger’s causes us, and it’s not me.

If you feel that you can offer up an explanation for this binary phenomenon between acceptance of the AS experience in a male, yet not in a female in the same family, other than gender of course, then I’d love to hear it.

Chalk Word Lines of Separation by Judy Endow

chalk_outline_by_madam_top_hat-

“Sneaky words, said with a smile,
While holding a piece of chalk,
To draw the dividing line,
Made by words,
Sounding alright on the surface,
But laden with,
Otherness.
Less Than
Different
Not US
And sometimes Not Quite Human

We are the people you call

  • Special
  • Low Functioning
  • High Functioning

You say we are in need of a

  • Peer Buddy
  • Peer Pal
  • Good Friend from Mrs. Jones Program

We are the

  • Inclusion Student
  • The community service hours other kids need

We sit

  • At the Peer Buddies lunch table
  • The Special Ed table in the Inclusion Room
  • On the Special Ed bench waiting for our short bus

During the school day you will find us in the

  • Inclusion Room (when it is our turn because they can only take one of us at a time)
  • Cognitively Delayed Room
  • Behavior Room
  • Emotionally Disturbed Room
  • EBD Room (Emotionally Behaviorally Disturbed)
  • Special Ed Room
  • Special Needs Room

We are so doggone “special” that after school we attend

  • Special Olympics
  • Special Arts
  • Special Night at the YMCA
  • Special Needs Social Group

Where every participant is just as special
And those who are not special are our helpers

 When we grow up we live in

  • Special Housing
  • Some of us in Section 8 rentals
  • Some in group homes
  • Some in county care facilities
  • Some of us are so special that there isn’t even a special enough place for us so we stay living with our parents.
  • Some of us are not quite special enough to get on a housing list and yet cannot maintain on our own so we stay living with our parents.

As adults too many of us spend our days

  • In Special Programs (if our county has them)
  • At ARC (if our town has an ARC)
  • At Sheltered Workshops (if one is available)
  • In Supported Employment (if we qualify)
  • Looking for a job (on the days we are able to)
  • On the couch in our parent’s home (because other options are not available)

Because we are so deficient
In ever so many ways
Whenever we do something ordinary
like zip up our jacket, ride a horse, or answer Jeopardy questions you describe us as

  • Awesome
  • An Inspiration

I don’t understand this. If my friends and I are such awesome inspirations to the rest of you

  • Why is it that we are in two distinct groups – US and THEM?
  • Why is it that your group always holds the chalk?
  • Why do you keep using your chalk to draw lines that divide us?
  • Why do you want me on the other side of your line – away from you?
  • And why do you think this is good?”

By Judy Endow

This is just an abstract from her amazing poem, “Chalk word lines of separation”, I encourage you to read it in its entirety on her blog site at http://www.judyendow.com/advocacy/chalk-word-lines-of-separation/