Autism from an adults perspective – “It’s a horrible feeling of vulnerability and helplessness to know that the non-autistic world sees you as seriously impaired”.

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Bitterness is a trap Aspies and Auties can easily fall into; it’s entirely understandable, but it doesn’t help the healing process. There is something that can be quite embittering for many of us on the autism spectrum, something appallingly undermining. For a start, there’s the stigma, the social taboo, the fact that to some people, you are now an embarrassment, and some of them show it.

On the inside, it’s a horrible feeling of vulnerability and helplessness to know that the non-autistic world sees you as seriously impaired, and there are a million and one ways it will try to make you feel as if you are not a fully functioning human being. At best, you know you’ll never be quite “normal”; and in a herd-mentality society that subsists on the fragility of social acceptance, this knowledge can a times indeed be a bitter pill to swallow.

This feeling of being vulnerable, confused and a bit lost, still happens to me every day, even  after more than forty years of dealing with it.

I was not diagnosed as having Asperger’s syndrome until adulthood, but well before that I did not produce appropriate emotional responses on meeting other humans, and that led to a disastrous cascade effect – I lost contact, became withdrawn, and fell off the cumulative ladder of social-emotional learning.

To this day, I have significant degree of impairment with social-emotional skills. I can’t be sure I am reading people’s signals accurately. Indeed, often I know I haven’t, even before they become guarded and then pissed off – I’m not at all sure I fully understand what they are saying, especially if they are “being polite” or trying to imply something rather than saying it straight out. I need direct, literal communication: and on this cagey, dodgy planet I seldom get it, which means that much of the time I can’t be sure that I did in fact “get it”.

I often have to ask for clarification, which can lead people to think that I am a “please explain” duh-brain; it also leads to conflict because they think I’m just being awkward in not accepting what they think they have said, or not coming back with what they deem the appropriate emotional response.

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At such times, my underlying high IQ is not obvious to the casual observer. This can all add up to a very embittering feeling of insecurity – the feeling that I am condemned to a position of permanent and humiliating disadvantage, of seeming to be a bit of an idiot.

Bitterness can set in when living with autism or Asperger’s syndrome. But is it possible to leave the bitterness behind, to work through it to a sunnier place? I hope so. I’m still working on mine: here are some ideas I’ve found helpful.

The first point is one that actually elongates the process rather than shortening it. I have often been told that I need to forgive, to let go, to move on. That is true: but it is utterly pointless trying to do that unless we have first fully, honestly and laboriously worked through all the negative feelings, all the grief we have about not fitting into this world. It is vital and indispensable that anyone who is on the autism spectrum has the absolute right to go through our own grieving process in our own time, and let go of it all only when we are REALLY ready to do so.

Forgiveness is not an instantaneous action, a simple stroke of volition. It is a difficult emotional process, and it simply doesn’t work if we try to jump stages. It is easy to say we must forgive, let it go. Yet we cannot forgive until we have let the anger up to the surface and expressed it. And don’t ask whether or not your feelings are reasonable – feelings are never reasonable. They are not meant to be reasonable: feelings are feelings, not rational ideas. Don’t get the two confused, they are very different phenomena.

Thus, to get to the stage of being able to let go of our resentments, we must work through all the powerful stages of grieving – the denial, the depression and hopelessness, the slowly mobilizing anger, the growing reconciliation to our new, impaired daily reality, the radical reassessment of our goals, life experiences and interpretations. It takes time, often a lot of time – and we need to allow ourselves to do it in our own impaired time, not on a schedule suggested by well-meaning (or otherwise) helpers.

At all times, I try to keep one guiding principle in mind and that is that the fact that I am an Aspie does not make me less of a human being.

Nor does it detract from my indelible human rights – including above all the right to make a positive contribution to the betterment of the human condition in whatever ways I can.

I may be different but I’m still a human being and just like every other human being I will have my good days and my bad days and my own unique ways of processing past hurts.

Rising to meet the challenges of understanding ourselves as Autistics in a non-autistic world.

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A major challenge that is presented  to many Autists in today’s society is choosing just where it is they wish to stand within the Autism spectrum.

I can proudly claim my right to be an Aspie and not see this as a disability, or  feel the need to change at all to fit into a non-aspergic world.

I can meet with others over the Internet, find a job where I don’t have to socialize with others, and indulge my favorite obsessions without messing anyone else’s life around.

At the other extreme, I can humbly acknowledge my crushing disability, and make extreme efforts to learn compensatory strategies that will help me become as “normal” as possible to fit in with everyone else.

Neither of these extremes suit me, and I’ve taken a middle position on the spectrum, which makes sense considering that I have a spectrum disorder!

I’m not sure whether or not having  Autism is something that I should bother to analyze rationally by seeking a legally framed story of cause and effect to explain it away, or whether it’s just one of the unavoidable hammer-blows of fate?

Or even, perhaps, as some see it, a challenge from the gods, designed to shift me into a different mode of functioning?

I guess in a lot of ways, the difficulty of rising to meet the challenges of understanding ourselves, is no different for us auties and Aspies than it is for the “normal ones” .

The normals still have the luxury (or obstacle?) of being able to hold on to their comforting views of the world, of themselves, of the purpose of life: whereas we are foreigners in a strange world in which we are reminded a hundred times a day that we are visitors to this strange place.

But, could that become a strength?

We may be able to think outside the square – let’s face it, we have little choice, since the square may now be closed to us. My need for literal and straight communication meant I had to be skeptical about anything anyone said to me, go back to first principles and seek truth with logic – an unpopular quest in a social milieu where the admission ticket consists of already knowing and accepting the consensus view, however illogical or untruthful it may be.

Can we, whom the gods have chosen to bless with this challenge, make any positive sense of being on the autism spectrum, and painfully carve out a new direction? Was it a divine intervention to force us to learn a very different way of being to the way of most on this planet? Is it all karma for actions we perpetrated in a past life? Can we learn from our dire experiences some new compassion for the suffering many?


I haven’t yet completed the long process of making sense of it all, and it will probably take me some years.

But I have found that it helps to keep myself open to the possibility that I needed to learn something, probably many things, from the many unpleasant things that happened over the years – bullying, taunts at school, abusive father, social alienation, constant sacking from jobs to name a few. I hope to gain insights that will make me a better person in a spiritual sense, perhaps that the direction I had been headed in during my recent incarnations was in need of change, and that I needed to take on board some painful humility about the common suffering of humanity which will help me become a more giving, forgiving and compassionate person in the end.

I ALREADY AM A HUMAN BEING – Written BY Judy Endow

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“I do not know if you have ever thought of it this way, but it is a step up that today autistics have the opportunity extended to prove themselves human.

As bad as that is and wrong in ever so many ways it is a step up from 50 years ago when I was a kid and we were not even given any chances to try to convince anybody of our worthiness as a human being much less our intelligence. It is all so wrong and such a slow-moving shift it is sometimes difficult to remain positive.

This past week I read two news articles on the same day that made me wonder if anything at all is changing in the attitudes of the general public in terms of knowing and accepting autistics for the human beings we are – YES, AUTISTICS ARE HUMAN BEINGS. Even when we do things differently based on our different neurology WE ARE FULL-FLEDGED HUMAN BEINGS. We do NOT need to first be made to act neurotypical before you grant us the status of HUMAN BEING because WE ALREADY ARE HUMAN BEINGS. I get so weary of reading sentences embedded in autism related news articles that seem to be based on an assumption that we are not truly human, but perhaps can be made into a human being by being forced to behave like a neurotypical person. Here are a few examples:

EXAMPLE 1: This study “examined the relationship between loneliness, friendships and well-being in 108 adults with autism aged 18 to 62 years. The study found that people with autism who have a group of good friends are less likely to feel lonely, depressed and anxious than those without many close friends.”
From: http://sfari.org/news-and-opinion/blog/2013/adult-focus

MY COMMENT: If the presumption is that autistic people are human beings why do we need a study to show that autistic people, just like human beings, feel less lonely, depressed and anxious when they have friends?

EXAMPLE 2: “A diagnosis of autism does not eradicate the essential desire in people to need intimacy. The desire is present, even if the means to achieve the desire – such as confident eye contact, an appropriate smile, looking and not staring – requires intervention by sources that understand autism. The main problem reported for the current lack of tools to help autistic people romantically is funds.”
From: http://www.autismdailynewscast.com/romance-and-autism-dating-is-more-than-possible-for-people-with-asd/3880/ashleyisaacson/

MY COMMENT: Autistics have human desires because WE ARE HUMAN BEINGS. The means to achieve intimacy (or to achieve anything at all connected with our own quality of life enhancement) does not depend on funds to create programs with interventions that force us to act neurotypical.

It is burdensome to have to continually try to convince so many people that AUTISTICS ARE TRUE HUMAN BEINGS. I so much appreciate my autistic friends and allies especially on the days I feel down about the way I am perceived as not quite a real human being. This is why we so much need each other – so we can take turns holding the space for one another when it seems personally hopeless. And onward we go living our lives to the best of our abilities sometimes taking the tickets others extend to us to be part of their world.

And when people don’t willing give me a ticket to participate in the human race – well I hate to say this, but I have learned how to sometimes steal tickets and force my way in at times. I hate stealing, but sometimes it is better than being denied access. The devil part of me wants autistics to go to stealing tickets classes rather than social skills groups. It would be great to learn to take our place in the world being who we are rather than being made to act the part of who we are not as the only way to be allowed access to membership in the human race.

Inclusion is great when it happens, but it puts me in the position of being dependent upon your benevolence to extend it to me. Even though inclusion is meant to be a good thing, and it often is, inclusion also practically turns out to mean that you get to decide when, where, if and for how long I will be given the ticket to be part of humanity.

I am near retirement age and tired of needing to continually wait for society to bestow my own humanity upon me and to act as if that is really theirs to extend to me when in fact it is not! Because you see, regardless of what you believe or how you act – I ALREADY AM A HUMAN BEING.”

If you have enjoyed reading this piece of amazing writing from Judy Endow you can follow her on Ollibean here or please feel free to show your support by  visiting her web site at  http://www.judyendow.com .

 

The Onus of Acceptance – Written by Jean Winegardner

“I recently got an email pitch from a company with a social skills product that claimed the product, “will enable [children with special needs] to be accepted by their peers throughout all aspects of their lives.”

I’m not actually sure what the product was because that sentence stopped me in my tracks.

“Be accepted.” I can’t stop thinking about that. “…will enable them to be accepted by their peers…”

I don’t even remember what the pitch was for because it made me so upset. Why the passive structure on that sentence? Why is the onus on the disabled to be accepted? Why is it our job to make you accept us?

Shouldn’t the real issue here be how to get the typical children to accept special needs kids?

I look at my beautiful, perfect, weirdo autistic son. He is not like his peers. He is also not always accepted. It would probably be easier in the long run for him to learn to “be accepted.”

Yet I look at him and the most damaging thing I can imagine saying to him is, “Maybe you should act like everyone else so kids like you more.”

Yes, I’ve put my son in social skills groups. Yes, I teach him about neurotypical society. Yes, I teach him how to navigate the world as it stands. But no, I do not teach him that he has to change so that the other kids will accept him. I tell him that I love him exactly the way he is. If kids are mean to him, I tell him that the problem is with them—not him.

I am a perfect example of someone who has adjusted her behavior to be accepted. At this point it is almost unconscious. I don’t know that it has been terribly damaging to do that. But it has been exhausting. And it is unfair.

I hear people making the argument all the time that people have to work to be accepted. I hear parents of typical kids, parents of autistic kids, and neuro-typical and neuro-diverse people alike say that you have to change yourself to fit in. To a degree, they are right. Most people work to get along with other people. We dress a certain way in business environments. We tend to alter our behavior based on the situation in which we find ourselves.

But these ways of fitting in and the fact that everyone does them doesn’t change the fact that society asks autistic kids and adults to change most of their behaviors and to deny their natural instincts for the purpose of becoming more palatable to the neuro-majority. Society isn’t asking autistic people to make the same adjustments as everyone else. Society is asking autistic people to suppress who they are almost all of the time.

Asking someone to change who they are to be accepted isn’t okay. It’s like asking a woman to learn not to be raped. It’s like asking a child to learn not to be abused. It’s like asking a victim to learn not to be bullied. I know those analogies aren’t exactly right, but that is what it feels like. If you want something to happen, you have to teach the actor—not the recipient.

I am happy that I hear more and more parents defending their kids’ rights to be who they are, society be damned, but I know that I also hear a lot of parents telling their kids that it is their job to fit in. I wonder if all parents—of both typical and autistic kids—stopped trying to help their kids fit in and just told them to be who they are—consequences be damned—if maybe those consequences would disappear.

Maybe the time has come to stop teaching our autistic kids to mold themselves into what society wants them to be. Maybe the answer isn’t to change autistic people until we are palatable to the world at large. Maybe we don’t need to keep working to “be accepted.”

Maybe the answer is to put the onus on everyone else to accept us.”

 Article sourced directly from http://autismwomensnetwork.org/node/1634

 

Finding the Positives – Women with Asperger’s Syndrome at peace with being different – An Interview with the Indomitable Rose Guedes and Iris Gray -Written by Richard Watts

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“Even as a child, Iris Gray knew she was different. Her parents always told her she was bright, but she still felt out of place.

She had few friends and was chronically clumsy. Other children would delight in loud noises, such as jets flying overhead. But Gray would run into the house, hands clamped over her ears, crying “too loud.” One night she even overheard her parents discussing whether to get her psychiatric help.

So it was a big relief to find out eight years ago, with a clinical diagnosis, that she has Asperger’s syndrome. It refers to a disorder on the autism spectrum characterized by problems with social interactions, difficulty with non-verbal signals or obsessive, repetitive behaviours.

“I always knew I was different,” said Gray, now 45 and living in Esquimalt with her three cats.

“I just didn’t know why I had so much trouble making friends, or why I always said the wrong things, or why things bothered me that didn’t bother other people.

“So it was such a relief” to receive the Asperger’s diagnosis, said Gray, a provincial civil servant.

October is Autism Awareness Month. Also, from Oct. 1 to 6 on the Sunshine Coast is the fourth annual International Naturally Autistic People Awards convention and festival.

Gray is also an organizer with the Asperger Meetup Group, a support group for anyone, diagnosed or not. Friends and family are always welcome.

She said the group has proved such a relief, a meeting place where people won’t judge or be turned off by behaviour that others might consider inappropriate.

Rose Guedes is also a member. The Victoria writer and mother of boys age 7 and 5 is in the running for a literary prize at the Naturally Autistic People Awards.

Guedes writes prose and poetry, blogs and maintains a website. She has a book, A Girl Outside the Box, expected in print in the coming months.

Unlike Gray, who presents as extremely introverted, Guedes is almost manic in her personability. It’s different but no less awkward.

When a co-worker, for example, complains of a headache, instead of offering simple empathy, Guedes said she is more likely to deliver a long harangue on the common causes of headaches and an equally long discourse on naturopathic cures.

“I want to try and fix things,” said Guedes, 28.

She didn’t learn she had Asperger’s syndrome until her eldest son was diagnosed as autistic. With that came questions and queries and the realization she was affected with the same disorder.

Growing up, especially in her late teens, Guedes said it was difficult because she found herself unable to set boundaries in social situations. At times it was altogether unsafe, especially for a young woman.

She held jobs, but they could be tricky.

As a young teen she worked at McDonald’s, which was easy since the work was routine, and movements and responses were pre-established. But working in retail, she found it difficult to establish an effective rapport with customers.

As she grew older, she found herself over-coping, obsessively demanding perfect social performances from herself. She even needed medication to keep herself calm.

“I was on the verge of a collapse,” Guedes said.

But with her diagnosis, she has learned to set boundaries and abide by her limits. For example, Guedes now doesn’t allow herself anything more than three tasks in any one day. And if she finds her emotions running too fast, she gives herself some quiet time.

“My writing these days is very therapeutic for me,” she said.

To learn more about Guedes’ writing, go to agirloutsidethebox.com. Information about the Asperger Meetup Group is at meetup.com/aspergers-209. To learn about the International Naturally Autistic People Awards, go to naturallyautistic.com.

Richard Watts / Times Colonist
September 9, 2013
© Copyright 2013

Sourced from http://www.timescolonist.com/life/women-with-asperger-s-syndrome-at-peace-with-being-different-1.618024

At last a good news story on Women with Asperger’s Syndrome that I just had to share.

 

No Longer Invisible Darling Girl

seventhvoice:

No Longer Invisible Darling Girl….. a beautifully written expression of what it’s really like for a mother to walk alongside her daughter on the pathway towards a diagnosis of Asperger’s Syndrome……

Originally posted on A View From My Summerhouse:

It’s been bad. It’s heavy. Bring on whatever it has to be, I can take it, but please don’t let my daughter suffer.  There is nothing worse than watching your children go through the hell of despair.

Today I wanted to write a light-hearted post about the birds visiting my garden, about my cats, about the lovely rain and the sunshine, but I cannot.  The words evade me.  I am lost inside a murky shadowland, staggering about looking for some kind of light, any kind of light.

My daughter suffers, entrapped in a world of isolation, hopelessness and yes, rage, that only someone with Aspergers can understand.  I am her mother and I think I understand, but I don’t, not really, though Lord above, how I try.

I try to explain to people what it really means for her to have Aspergers.  Yes, she went to school, gained a handful…

View original 1,477 more words

Imagine What Your World Would Feel Like…….

tumblr crying girlImagine,

What your world,

Would feel like,

If you could turn,

All of the pain,

Of invalidation,

Into the celebration,

Street angel

Of  living,

An accepted,

And powerful,

Female,

Life.

Do You Love or Loath the Autism Label ? – Jeanett Purkis’ Journey

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Loathing and Loving the Autism Label

Description: Jeanette Purkis

Posted by Jeanette Purkis on Sunday, 15 September 2013 in Adults on the Spectrum

Description: http://aanmag.com.au/images/easyblog_images/42/2e1ax_hako_entry_17811635_meyepencil.jpg

I was diagnosed with Asperger syndrome in 1994. I was among the first wave of adults diagnosed with Asperger’s in Australia, the condition being relatively unknown in the English-speaking world until the early-mid 1990s.  

This may seem strange to some, but at the time I got my diagnosis I really, really didn’t want it. It was not, as some others describe, a relief and a revelation and it did not cause a rush of understanding or self-acceptance.

The reasons for my not accepting the Asperger’s label were myriad, but mainly boiled down to the fact that I was obsessed with fitting in and being ‘cool.’ I was a prisoner at the time – I equated cool with the kinds of things that most people would be horrified by. I also thought that my parents would go to great lengths to let themselves off the hook for the way I had turned out. I felt rejected and neglected. I was an embarrassment who needed a diagnosis to explain away my inadequacies.

As time went on, my mum would tell me all about Asperger syndrome (at least,her somewhat incomplete understanding of it). I was encouraged to watch videos and read autobiographies of people on the autism spectrum. I rejected all of this of course and found myself getting rather irritated and feeling ambushed with my overzealous parents and their attempts at educating me about autism.

One thing was very telling about my rejection of my diagnosis. I didn’t really like myself or accept myself. I found myself feeling very strange when I watched any of the documentaries my parents kept subjecting me to. Deep down, I knew I actually did have Asperger’s but I could not consciously accept this. I found that being confronted with information on autism or even worse, meeting people who had it, was incredibly challenging.  To accept that I had autism would mean accepting myself, and I was not prepared to do that on any level.

 

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By my second year of university I had started to develop an appreciation of myself. At the end of second year I started searching through my things, looking for an important piece of paper: my Asperger’s diagnosis. As soon as I read it, I joined the local autism organisation and borrowed books and videos so that I could find out more about my diagnosis.  I accepted it without question, as by then I had gone some way to accepting myself.

Many people tell me that their diagnosis is a turning point. It is an opportunity to understand themselves and accept themselves. The moment of learning that they have Asperger’s is valuable and poignant. They know where they fit in the world and who they are. And they have the added bonus of belonging to the ‘club‘ – the many thousands of other people like them in the world.  It is a liberating moment, getting that little piece of paper which describes our unique take on the world and our particular perspective on life.

I had that liberation, but I had a delayed version of it. The moment that I accepted my Aspieness, some seven years after I was diagnosed, was a watershed moment in my life. Three years after accepting who I was, I wrote my autobiography, Finding a Different Kind of Normal, a book about having Asperger’s. I went from being unable to utter the words Asperger’s and autism to being published internationally as someone who identified with the label.

My diagnosis has been a journey of self-acceptance and developing self-worth. I hope that everyone who needs one continues to get the opportunity to access that same sense of acceptance and belonging through having a diagnosis of autism spectrum disorder.   

Tips for Aspies:

  • A label is not an actual thing. It is simply a way that doctors and clinicians describe a number of similar qualities.
  • The autism or Asperger’s label can change your life. But it can lead to issues. Make sure you remain independent and self-motivated even if you have a diagnosis. After all, it’s not an excuse to rely on others, it’s a means to be the best you you can be.
  • A lot of adults find out they have an autism spectrum disorder after their kids are diagnosed. This is great and can build amazing bonds within the family.
  • I view autism as a club. It includes a bunch of people with similar experiences and interests. Use your diagnosis to feel included in the club – seek out others with a similar label and chances are, you’ll make some great friends.
  • Some people are self-diagnosed. This can be challenging for people with the official diagnosis to deal with. I would encourage those of you who are self-diagnosed to go and get the official label, to put your mind at rest.
  • There is no such entity as ‘an autism’. It is simply a description of experiences and  characteristics. Also, different psychiatrists have different opinions. If you are unhappy with the treatment you receive from one doctor, look for another one who better suits your needs – they are your employee after all!
  • Use the label to your advantage – make it help you rather than hold you back.

 

Don’t Box Me In

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We need to share more love in the world.

Not hate.

“I am tired of people continually putting others into boxes based on made up ideas of how they should be or what they should do.

We are all people, on different journeys with different values, ideas, different interests, sexuality, abilities/disabilities and neurology.

We are diverse.

And we are all worthy of love and acceptance.

I’m tired of conditional love and acceptance.

Let’s celebrate our differences and move towards acceptance of each other regardless of our differences.

Unconditional love all the way!

♥ stuff the boxes that others try to place us in!”

This post was written by a lovely woman whose had being judged by others up to ears. So open your hearts and listen to what it is she has to say. She’d like nothing more than for her message to go viral so please feel free to reblog and share this in as many places and as many times as you can. Thank you K for you wonder full words.

  • Gomer (evangelhome.wordpress.com)