Diagnosed with Aspergers late in life mother and wife (Dec.07)
When first diagnosed back in July.07 to help come to terms with having Aspergers, I wrote an article regarding awareness of aspergers syndrome and I received so many insightful, informative and supportive emails in response.
It inspired me to build my own web site Aspergers Parallel Planet, as when first diagnosed I had some strange comments like is it a disease, why didn’t you tell me before. As for being a disease no its not, it’s part of me and who I am. Would it of made a difference knowing, to me yes and it has already helped me to understand so much, but really I’m still the same person.
I soon realized that my real problem with having Aspergers was in fact not being understood by others. So decided to continue writing and hence my web site grew, instead of becoming frustrated and to stop the feeling of being isolated, as no real support was available to me.
Unfortunately have found quite often the so called “normal world” often see us as outsiders and keep us at arm’s length.
Since being diagnosed it feels like I am studying for a degree in Autism, it has taken over as I need to know and understand myself. After years of feeling like the outsider, knowing I was different but not knowing why, having to live in your world, but feel happier in mine. Suddenly when diagnosed everything seem to make sense, and at last able for the first time in my life to be my real self.
What I have realized is our symptoms are in fact ourselves Aspergers is just the way I’m wired, we are all different and have different symptoms, on the spectrum or not. The way I now explain things is that NT’s (neurotypicals) see and think one way and Aspies (individuals on the autism spectrum) see and think another way and our wires continually get crossed.
Article: Awareness of Aspergers Syndrome (July.07)
After a lifetime of seeing the world differently and not knowing why, Alyson Bradley has been diagnosed with Aspergers syndrome. Now, she offers some insight into her life
Aspergers syndrome? You may well ask. I did not think or even know about it until recently. I'm in my 40s and have just been diagnosed with Aspergers syndrome. I also found out I have other associated conditions like Dyslexia and Dyspraxia, this helps to explain some of my learning difficulties, never like driving Dyspraxia, writing things down near impossible…my mind works too fast and muddles thoughts – computers have helped change that. I also had Clutters a speech disorder when youinger among other things…
Anyway apparently, often people with Aspergers will have other learning difficulties. Dyslexia alone would be bad enough (but I think about 10 per cent of the population have it to some degree). Right now, though, I'm still trying to get my head around being an Aspies. All of a sudden, it's like not being who you thought you always were.
I have always been different but I never really knew why. Anyway, not so long ago I saw a TV program about dyslexia and could relate to so much of it, I decided to find out more – which led to me being diagnosed as a dyslexic, dyspraxia adult, who also has Aspergers. I never really thought about or knew about it before. That's why I'm writing this – because I'd hate to think of anyone else having to be so misunderstood for as long as I have been.
I'm attempting to give you an insight into what it is like being me, and explain what Aspergers syndrome is – as I see it anyway. Then, maybe, if you have a child or know someone who is a special gifted unique individual, you will be able to understand them a little better.
Aspergers is known as high-functioning autism (HFA). One person in 100 has an autism spectrum disorder; this includes people who have Aspergers syndrome. About 40,000 people have autism spectrum disorders in New Zealand. Everyone is affected differently, as we are all individuals. You really need to live with it to fully understand.
Whatever their general intelligence, everyone with the condition shares a difficulty in making sense of the world. However, IQ tests often show superior intelligence and high memory capacity. Aspergers is found among all races, nationalities and social classes. It affects four times as many boys as girls, but that amount keeps changing as more females come forward (it could be 50/50 who knows!) and in case you're wondering, yes, I am a female, mother and wife.
Emotionally, at times, I just do not get it. I'm not even sure if I love and feel like you, and that hurts. Over the years, I think I've learned to act like everyone else. But things just do not always seem to really feel right. At times I can be quite emotionally detached; needing my space and the thought of being touched by anyone can be unbearable – even by my husband.
I can go through emotions robotically, but feel no warmth, just cold and distance. At times like this, my expressions of affection and grief are often short and weak. It's not that I have no feelings – I seem to push everyone away, but inside I am desperate to be hugged and loved.
I might not react to situations the same way as you. When I was younger I could at times totally over-react and be out of control. When I was quite young, my twin brother and I would be laughing when everyone else was crying or sad. But these days I do not react much at all. I just want everyone to go away, so that I can deal with things in my own way without being judged wrongly.
It can be so lonely at times – unable to discuss how I feel – because most of you just don't get it. I have tried to explain, but others seem to think I'm naive, living in a fantasy world. So over the years I have tried to change, to make sense of things and be like you, even if it means deep sadness for me.
However, I do experience emotions, and, indeed, have a tremendous sense of humor – just one that you may find hard to relate to. Music helps to blank out my muddled thoughts. No matter how bad I feel, if I go up my local hills alone, so it is just me and the world, it really helps to calm and refocus me and everything seems OK for a while.
But what really makes me happy, right now, is painting, which I pour my emotions into. Yes, I can truly say that when I'm painting and playing music, I'm very happy. I also spend as much time as possible helping out at the local school, because the children are a real joy to be around. The Aspie community and websites is a place where I now feel a connection to, my new family it seems.
I have always had problems with speech. As a child no-one could understand me. Now, especially if I'm meeting new people, my speech can become muddled and fast. I blurt out whatever first comes to mind. When I'm nervous I can be awkward and clumsy (hold on to your glassware). I have no problems with heights, unless balance is involved – what's that? I have never ridden a bike. Forget interviews – my mind goes blank.
Noise also really affects me. My husband eats normally – you could say quietly – but to me it can seem really loud. Just odd little noises, even breathing, can at times affect me and I can feel myself becoming stressed and I just want to shout "stop" really loudly to release the emotional build-up.
I can be too honest and insensitive to the feelings of others. I'm not so good at keeping friends because when I have a low, I can offend and pester them far too much and not always say what I mean, being quite rude at times. This can lead to paranoia, which is another big one. I often misread what people are saying or thinking. I tend to obsess on things until I'm 100% sure about them. When I start something, I can get quite fixated by it and think about it all the time, using up all my energy, to the point where I become quite obsessive.
At times my mind seems to race, jumping from one thing to the next. It's like a nervous energy – words in my thoughts turn to chaos. That's when I want to withdraw. It's at times like these when conversations can get confused, when talking about one thing and I go off on another subject. I can mix up words and conversations, and sometimes not quite make sense to others, only half saying things and wondering why they do not understand me. I find it hard to listen to other people. Once I get the point, which is usually quickly, I will lose interest and want to talk about something else.
I find I become bored easily, so I try to always keep busy, otherwise my mind will race off in all directions. I feel like an actress playing the part at times, wanting to do and say one thing, and at the same time having to control my real self and thoughts – unlike when I was younger and could get away with crazy fun moments. I remember once just talking very fast all day long without hardly stopping, to the despair of my brothers.
Having continuous racing thoughts means I find it hard to sleep and as soon as I wake up, I have to do something. I have to be totally organized to cope. I hate not being in routine – any change seems to elevate my stress to out-of-control levels – even if my husband says "let's just go out".
As I get older, certain things have changed and I can gain control to a point. When I was younger I could never look directly at anyone and socially found it hard. I was prone to egocentric behavior – the person everyone remembers for the wrong reasons. But however hard I try now, deep down, I know I'm different and always have to make that extra effort.
It's not all bad. Apparently I have strengths that most of you do not, such as the ability to process information automatically and quickly. My fluid reasoning gives me the ability to form concepts and solve problems using unfamiliar information or procedures.
I have a wonderful gift for being able to see the whole picture, but that can complicate things. For instance, if I'm told about a new procedure, I can usually find any error or possible changes it needs straight away. I have no concept of figures of authority – even if you're the prime minister, I will challenge and correct you, if I feel you are wrong.
All of this, at times, leads to exhaustion and I can get quite anxious. This is when I just want to withdraw into myself and release all the mixed-up hurt and pain, hideaway and be safe. In fact a lot of the time I like being in my own space, not having to deal with other people's ways.
I have found I often prefer being around children, older people and animals because they are not so judgmental. Adults can be hard work. As hard as I try to please, I'm continually misunderstood for being me. It's like I have a hidden secret, which most of you will never fully be able to understand.
I have found that I can connect with animals it’s like with have an extra sense, and have heard asperger people be compared to cats “Cats have Asperger Syndrome, because they do not like being told what to do, intelligent, independent and hate change!.”.
When first diagnosed, the worse thing was knowing that there is no fix, that I will never be like everyone else. But I now see it in a positive light. I have found out other members of my family have Aspergers; my children and theirs could also have these special traits, which has been behind some of the greatest human achievements to date.
By writing this I'm not only trying to help you understand me, I'm also trying to understand myself. Because It really feels right now, at times like there are 2 parallel planets, and the wires are so crossed it would take a miracle to untangle them..
The problem is having to pretend everything is OK, when my world feels like it's tumbling down in front of me and wondering who is the real me. But knowing and being able to understand myself gives me so much more hope and courage. By having a better understanding of Aspergers and associated conditions hopefully I can stop others from having to suffer for as long as I have had to, as I know only too well what a lonely existence you may be leading.
For now I can at least celebrate having a fast, complex brain, and start to feed it the right information, setting me and my family free to be ourselves. The one thing that will never change is my special boys, Jack and Stuart, who truly are the best thing that ever happened to me. I like my world – it's fun – and right now it is where I want to be.
All I ask is that others try to accept me for who I am – a person who does not conform and fit into their world. Does anyone have the right to choose, or decide what or who is right in this world? Aspergers is just a part of who I am, we are all born as different unique individuals, and can have various associated conditions on the spectrum or not. My associated conditions are not autism, autism is just the way I am.
Being diagnosed is not easy, and anyone thinking of doing so, please get advice. At first it really can seem like you are no longer the same person and have to grieve the lost of the old one and except the new one!
If you suspect an autism spectrum disorder, a specialist diagnosis and assessment should be arranged through a GP, the Child Development Unit or a clinical psychologist.
Copyright © 2007 Alyson Bradley (Aspergers Parallel Planet)
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02 Mar 2008, 6:10 pm
