tag:blogger.com,1999:blog-86345533561470502682024-02-20T10:11:36.203-08:00ALL ALONE AUSSIE ASPIEI'm a 65-year-old Australian woman diagnosed with Asperger's Syndrome five years ago. I also have incurable cancer. Virtually every day of my life I am assaulted by words and behaviour of insensitive so-called normal people. The pain of so much rejection needs to be expressed and released. No more suffering in silence.Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.comBlogger16125tag:blogger.com,1999:blog-8634553356147050268.post-22209491096326949262015-03-02T15:40:00.000-08:002015-03-02T15:40:12.963-08:00THE RUNAWAY BRAIN<div dir="ltr" style="text-align: left;" trbidi="on">
I found an interesting book, The Runaway Brain, by Christopher Wills. <br />
It is mainly about evolution and genetics, but on page 279, there's a bit about the autistic brain.<br />"Autistics, savants in particular, cannot shift their attention to that great range of inputs from the surrounding world that occupy much of the attention of normal people."<br />
I can really identify with that. <br />
I'm so much aware of it. <br />
It's like the cogs inside my brain are rusty and cannot turn quickly enough. <br />
So I cannot flit from one thing to another and then back again. <br />
I have to do things, serially, one at a time. <br />
But instead we have a singleness of purpose, a great quality to have.<br />
</div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-32039825874298327992015-03-02T15:29:00.000-08:002015-03-02T15:29:18.538-08:00BULLY & BAD PHOTO<div dir="ltr" style="text-align: left;" trbidi="on">
This blog is my therapist. <br />
It enables me to vent about anything that is upsetting me. <br />
To get it off my chest instead of bottling it up inside and creating the at times unbearable condition of 'sensory overload'.<br />
<br />
Today I'm upset about two things.<br />
A group photo taken at a local business group meeting that I attended with my carer.<br />
And being bullied by my Housing NSW client service officer. <br />
<br />
My 'aspiness' is very visible in group photos. <br />
Compared with the others in it, I have a blank, fixed facial expression, and rigid body. <br />
I am also grossly overweight, wearing a jersey dress with a too low neckline showing cleavage. <br />
I was shocked when I saw it, in public view. <br />
<br />
The Housing woman is authoritarian and dictatorial, incapable, it seems, of relating to me in a normal, respectful way. <br />
Every time I have dealt with her either in person or on the phone, she has fired orders and threatened to take me to the tenancy tribunal. <br />
At first I am filled with fear and anxiety, then I become angry. <br />
I've reached the stage now where I can't bear to have anything to do with her.<br />
It's like a phobia, except that a phobia is an irrational fear and mine is perfectly rational.<br />
I'm afraid of being kicked in the guts by her again.<br />
I already suffer from PTSD so her brutal behaviour puts me instantly into the 'flight or fight' mode.<br />
In psychological terms it would be called a 'conditioned reflex', a response that has become an automatic aversive reaction to her. <br />
I couldn't even bear to open a letter from her recently. <br />
That's how bad it has become. <br />
<br />
I have complained about her, but nothing is ever done. <br />
Complaints by tenants about public housing staff by are invariable dismissed.<br />
They just play on the negative stereotype, the false premise, that the tenant making the complaint is probably crazy.<br />
I have the right to protect myself from further abuse by this woman.<br />
<br />
What to do?<br />
<br />
</div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-61550718263783531232015-02-24T22:30:00.000-08:002015-02-24T22:30:22.611-08:00GOOD BYE ASPERGER'S, HELLO AUTISTIC SPECTRUM DISORDER<div dir="ltr" style="text-align: left;" trbidi="on">
Just learnt today that I no longer have "Asperger's Syndrome", but instead "Autistic Spectrum Disorder" (ASD).<br />
Good. That makes a lot of sense.<br />
This change has been made in the new DSM-5, a book containing standard psychiatric conditions, used as a reference book by psychiatrists throughout the world. <br />
No more do I have to explain the meaning of the word "Asperger's", where it came from, and the nature of the condition the Austrian paediatrician of that name first recognised back in the 1940s. <br />
I'd invariably say: "It's a form of autism", a word most people recognise. <br />
I don't have to do that any more.<br />
It's the good old KISS principle at work: Keep It Simple Stupid.</div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-27870673646953082712015-02-24T19:27:00.003-08:002015-02-24T19:27:34.850-08:00CANCER DISCLOSURE<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
In the past I've been concerned about whether to tell a prospective employer about my Asperger's Syndrome or not. <br />Now I'm finding the bigger issue is to whether to tell them that I have cancer. <br />
Surely it's no big deal these days, with one in three Australian women getting it, and one in two men.<br />
I went for a job last week and wrote it on the form wanting to know about my medical history. <br />
You're in a bind if you answer it truthfully, or if you do not. <br />
I really want the job, but haven't heard back. </div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-58661232195208632592015-02-24T19:23:00.002-08:002015-02-24T19:23:27.104-08:00CANCER ALL CLEAR<div dir="ltr" style="text-align: left;" trbidi="on">
My cancer is now officially in remission. <br />
Has been since I started taking a daily Arimidex tablet some 12 months ago. <br />
It is designed to block the oestrogen stored in my muscles which feeds my type of hormonal cancer. <br />
Two amorphous masses of cancer cells visible in 2013 can no longer be seen. <br />They hiding in a bunker just waiting for an opportunity to come out and wage war on me again. <br />
I've been told to lose weight, 20kg in fact, and amazingly, have just lost 5kg simply by being conscious of what I put into my mouth.<br />
I'm no longer a mindless eater! <br />
What a different this had made to my sense of having some control over my life.<br />
And to a new sense of achievement and 'can do' attitude. <br />
I'm inspired to lose the other 15kg now and will do strenuous exercise to shift it. <br />
Another positive outcome has been that my sense of taste has returned, no longer deadened by constant intakes of sugar and salt. </div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-60122711463558945372015-02-24T19:14:00.000-08:002015-02-24T19:14:46.632-08:00LONG TIME BETWEEN POSTS<div dir="ltr" style="text-align: left;" trbidi="on">
For people with Asperger's Syndrome, the organising and planning part of the brain doesn't work. This means I'm constantly floundering about, without any sense of purpose or direction. <br />
Rather, I have lots of different purposes and directions, always going off on different tangents, and unable to stick to the one thing. <br />
I once described it well in a poem I wrote: 'Like a rudderless ship not yet sunk.'<br />
This defective 'executive function' of the brain makes it impossible to be successful in life, in a career or in finding a marriage partner. <br />
I'm not complaining about this, just explaining it. <br />
I fully accept I have Asperger's Syndrome and would never try to change myself. <br />
I'm shocked when someone says to me, "Isn't there some type of pill you can take for it?"<br />
Then I want to laugh. <br />
A woman who recently said this to me has a son diagnosed by a psychiatrist with ADD, Attention Deficit Disorder. <br />
It struck me that this is a false 'disorder' created by the society in which we now live. <br />
Back in the 19th century, a 13 year old boy disinterested in school and unable to focus there could leave and work on the family farm or business with his father. <br />
This would have been considered perfectly normal. <br />
Now there is too much emphasis placed on fitting into the school system and doing well there. <br />
It's simply the wrong time and place for this boy, not a psychiatric condition. </div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-80716605456868708922013-09-28T19:32:00.001-07:002013-09-28T19:32:42.421-07:00TRANSITIONS<div dir="ltr" style="text-align: left;" trbidi="on">
I am becoming more aware of how my inability to make quick mental transitions impacts adversely on my life. <br />
Sometime I just don't 'get' something because my brain gets overwhelmed with information overload and my thought processes get spun out. <br />
If someone says something offensive to me, it takes days for my thoughts and feelings about it to come to the surface. <br />
This means I can't do anything about it at the time which I need to be able to do in order to defend or protect myself. <br />
Knowing this does not make any difference to the process. <br />
I need to have someone supportive who knows about AS with me when I see doctors, but I do not have such a person.</div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-65107569849129558232013-09-28T19:26:00.001-07:002013-09-28T19:26:36.087-07:00DR QUINN, MEDICINE WOMAN<div dir="ltr" style="text-align: left;" trbidi="on">
This morning I was flicking through my local free to air digital TV channels when I came across a movie about a disabled boy being rejected by an entire small town!<br />
He was mute, would not make eye contact, and was sad and withdrawn. <br />
It looked like Asperger's Syndrome. <br />
I found myself crying as I identified with his pain caused by unrelenting rejection and being constantly discounted by others.<br />
The town's barber refused to cut his hair because, he said, his other customers did not want to be in the same room as an imbecile. <br />
The only person supporting him was a woman I identified as actress Jane Seymour. <br />
There was talk of sending the boy away and putting him into an institution, but then his father, the local publican, was found and he had another protector.<br />
As with many aspies, the boy had a special gift - he was very good at drawing. <br />
When the movie ended, it felt like there was hope for him in the future.<br />
I wanted to know about this show. <br />
Turned out to be a re-run of an old American TV series called <em>Dr Quinn, Medicine Woman</em> that was produced between 1993 and 1998. <br />
The role Jane Seymour played was that a young single female doctor, Dr Quinn, who had moved to Colorado Springs from Boston to practise medicine there. <br />
At first, she too was totally ostracised, like the disabled boy, because she was a woman. <br />
The entire series appears to have been a study of prejudice in all its various forms. <br />
There is more information about in on Wikipedia.<br />
</div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-7743905695288415842013-09-16T16:46:00.001-07:002013-09-16T16:46:12.350-07:00<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
There is no government support for adults with Asperger's Syndrome in Australia. <br />
The peak autism organisation in the country, ASPECT, is just a couple of kilometres away from where I live, yet it is of no help.<br />
It only supports children with AS and their families. <br />
There is an organisation dedicated to assisting aspies, but it is in another state, in Brisbane, Queensland. <br />
They organised a workshop in Sydney earlier this year with Temple Grandin as the keynote speaker which I attended. <br />
But I need some one-on-one 'hands on' help.<br />
Before my health started to declined, I needed a mentor, someone to help me get my thoughts in order, so I could stop floundering through life like a rudderless ship.<br />
I find it hard to get things done and keep going around in circles because the 'executive function' of my brain does not work properly. <br />
That is a characteristic of AS. <br />
Now I need a carer.<br />
The former Labor government's National Disability Scheme has been launched in pilot form in the Hunter Valley, but I've been told by the time it gets to Sydney, I will be ineligible because I will be over the age of 65. <br />
Surely there are university students doing special needs courses who could assist adult aspies as part of their coursework and training. <br />
Maybe I need to make this suggestion to the relevant academics.<br />
</div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-9495790024525107552013-09-16T16:35:00.001-07:002013-09-16T16:35:10.913-07:00<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
I am phoning my local community aged care support services, trying to get some assistance.<br />
I need someone to visit me once a week to check I'm OK, and come with me to doctor's appointments.<br />
It's so hard.<br />
With an ageing population, there is a big demand for these services and I have to wait in line. <br />
I have a low frustration tolerance, so this is hard for me to do.<br />
I've been wanting and needing this support for so long and I want and need it now.<br />
Patience.</div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-44406475794232782462013-09-16T16:32:00.002-07:002013-09-16T16:32:38.165-07:00<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
I went and saw my local priest about my aloneness and need for some support. <br />
His response was to tell me the office needed some filing done and that I could do that.</div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-78567092972523666622013-09-16T16:30:00.003-07:002013-09-16T16:30:26.049-07:00<div dir="ltr" style="text-align: left;" trbidi="on">
Tomorrow I will go and see my cancer doctor who will carry on again because I don't have anyone with me.<br />
I've told him I'm completely alone in the world, I have no one to bring, but he doesn't get it.<br />
I've even given him a copy of a very good summation of AS behaviour, but he probably hasn't bothered to read it. <br />
Doctors are among the worst offenders in regard to lack of understanding of AS, and the need to treat aspies with dignity and respect. <br />
I've been made to feel by some doctors that I am some sort of alien needing to be studied and examined at arm's length.<br />
If I say anything that to them sounds a bit weird, I am relegated to the box marked 'mentally ill' and not taken seriously.<br />
It is such an insult, such an outrage.<br />
All done behind closed doors.</div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-47074544307128183222013-09-16T16:10:00.001-07:002013-09-16T16:10:12.364-07:00SLOW THINKING & SUMMING UP<div dir="ltr" style="text-align: left;" trbidi="on">
Having Asperger's Syndrome means I am a slow thinker, a slow cognitive processor, which means I am not good at thinking on my feet. <br />
I need time to process information.<br />
This makes it difficult to protect myself from verbal abuse.<br />
The man who got stuck into me the other night about never having married did not know I had AS, but he must have picked up on my vulnerability.<br />
I think 'normal' people are constantly sizing each other up, both consciously and unconsciously, working out if others are safe, able to be taken advantage of, etc.<br />
This self-protective or predatory behaviour is not part of my make-up, probably because I cannot 'tune in' to other people.<br />
It's an emotional thing, and my emotions have been shut down, permanently frozen I believe since my traumatic birth.<br />
Now that I am aware of it, however, I am consciously observing people in the street, tuning into their 'energy', and trying and read it. <br />
It's been a real eye opener and exciting to finally discover a level of communication I have known nothing about.</div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-50061097140720204862013-09-15T19:54:00.002-07:002013-09-15T19:54:59.366-07:00CONCEAL VERSUS REVEAL<div dir="ltr" style="text-align: left;" trbidi="on">
After I was given my AS diagnosis, I told everyone, thinking it would make my life easier because other people would now 'understand' me.<br />
Silly me!<br />
My bad boundaries had kicked in again. <br />
I've found telling people I'm an aspie is just as fraught with danger for me as not telling.<br />
Telling is probably worse because I am usually <em>instantly</em> rejected instead of it taking a bit longer to occur.<br />
This rejection mainly takes the form of being talked down to, treated like I'm mentally defective.<br />
Never mind that I have post-graduate university qualifications and have worked as a teacher and journalist. <br />
I also have about a dozen Google blogs, mainly about Australian family and local history.<br />
But people I've just met don't know this about me, so they take me at face value.<br />
At what I tell them about myself.<br />
Most people's perception of the nature of Asperger's Syndrome is very hazy, and their opinion about it because of ignorance is negative.<br />
I'm realising that some people make me very aware of who they are when I first meet them. <br />
Like their ego, their sense of self, and their sense of self-importance, is very strong. <br />
Maybe I need to do that, but after a lifetime of rejection my self-esteem is very low and I would find that hard to do. </div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-40859444224615090462013-09-15T19:42:00.001-07:002013-09-15T19:42:29.466-07:00BAD BOUNDARIES<div dir="ltr" style="text-align: left;" trbidi="on">
One of my biggest difficulties in life has been protecting myself from abuse by others. <br />
I understand this is caused by me not having a strong sense of self, and therefore having weak boundaries.<br />
Others sense this and punch right through.<br />
A classic example happened last week.<br />
I was at a function where I didn't know anybody and a man a bit older than me started talking to me.<br />
Or rather, asking me questions. <br />
Interrogating me.<br />
He wanted to know why I wasn't married. Why I had never been married. <br />
Was it because I was a Catholic and had less choice? <br />
Was it because I was too choosy? Oh, yeah, that was it, he was sure. <br />
And what did I do in response to this verbal assault on my person?<br />
I tried to defend myself!<br />
Instead of telling him to go away, that my personal life was none of his business, I kept coming up with excuses to justify myself.<br />
That night when I got home I felt like I'd been raped. <br />
I will try to do better in the future if such a situation arises again, but chances are I will act the same because of my poor sense of self and resulting bad boundaries.</div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com0tag:blogger.com,1999:blog-8634553356147050268.post-3116098914302646132013-09-15T19:20:00.001-07:002013-09-15T19:32:52.683-07:00<div dir="ltr" style="text-align: left;" trbidi="on">
Most days now I'm happy to stay at home, isolated and lonely, but safe from criticism and rejection. For most of my life I couldn't understand why it kept happening to me, people putting me down or taking advantage of me. <br />
Then I saw the light. I got my diagnosis of Asperger's Syndrome.<br />
Sitting at my computer, I'm overwhelmed when I recall these painful experiences. <br />
Even with my ageing memory, there are too many to bear. <br />
I've tried and put on a happy face, but now I see that I have to rid myself of this baggage by talking about it.<br />
A blog is a great form of therapy. <br />
Even if nobody is reading it or listening to me, I can finally get all this stuff off my chest.</div>
Pamela Mawbeyhttp://www.blogger.com/profile/07994284028819508292noreply@blogger.com3