“ I looked at the world and the world looked back at me for 50 years. Then I was diagnosed with Asperger’s Syndrome and suddenly everything changed”.

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“I looked at the world and the world looked at me for 50 years. Then I was diagnosed with Asperger’s. Getting the diagnosis had a profound effect. Over the following weeks, a thousand shards seemed to rush together to form a single mirror. I could see myself at last. There were no distortions, no ‘missing pieces’. So I could stop searching for them.

If you’ve ever beaten yourself up about your ‘failings’ you might begin to comprehend the sense of relief. After a lifetime seeking that elusive ease that other people seem born with, I suddenly realized that they were born with it, and I was not.

I’d often watch people in an attempt to work out how they’d go from being strangers to being close. I remember seeing two people sitting on a bus. He glanced at her, then reached up and pushed a strand of hair off her face. She looked at him and smiled. How does that happen I’d wonder.

I’m told that when younger, my inability to read signals left a small succession of men feeling rebuffed and vaguely puzzled. I’m flattered and bemused. I hope they were good-looking.

Some years ago I was in a relationship. He had to practically club me over the head and drag me into the cave before I realised he was interested. To anyone else, that might have been a warning. But people with autism tend to trust what we are told because we don’t speak body language. I spent our first year together discovering how manipulative he was and the next three looking for an exit strategy.

1098119_10151923638169903_2089384885_nThere is a vast gulf between being alone sometimes and being alone in the bubble of aloneness experienced by many people with autism. I go out every day, to be among people, but do not try to engage with them. I sit with my book or crossword, conscious that I am being part of society. If someone took a photo of me in the coffee bar, you wouldn’t spot the Aspie. And I might not be the only one.

Social isolation is not just about having mates to socialize with. It’s true that if I go to the cinema I go alone. I eat alone. I go on holiday alone and when I get home, everything is exactly how I left it. But it is more profound than that. If I am ill, no-one will bring soup or take me to the hospital. At the end of a working day, there is no-one to talk to about the stresses or the highs. If I am anxious, I stay anxious. I have no friends I can call to cheer me up. I know nobody with a car. If I want to buy something bulky, I have to pay to have it delivered. Join a club? Been there, done that, learned new skills, went home.

I know all the things I ought to do and how to access information. I don’t require kindly advice – I simply can’t do it because I work full-time and just getting through the day is too tiring.

I have a parent and an Aspie sister and we form a good support group. We have other siblings, without Asperger’s. They are happy with their families, however I wish they would make some attempt to understand autism. Not for myself, but because they have children and their children are beginning to have children.

I have read books by other Aspies and trawled the internet forums. There is a lot of emphasis on young people with autism. I was never a young person with autism, as I had no idea I had it. I was a young person with problems. I am now a middle-aged woman learning for the first time to recognize my problems as Aspie problems and look for interventions. I have the problems, but there don’t seem to be any interventions available to people of my age.

So I review my life alone. No change there. There are problems I haven’t been able to rectify, but I know how to be kind to myself. When I get home, electric lights go off and I light candles. I burn oils because they calm me. I am learning how to slow down the chatter that runs through my head and I am looking for the key to a full night of sleep.  I might never be at ease with you, but I am more at ease with myself.

I have plans that are based on who I am, rather than who I think I ought to be. I spent my first half century trying to fit in and now I have stopped. If anyone questions my oddness, I tell them it’s because I’m odd.”

This amazing story which so aptly reflects the maze of confusing emotions and experiences  that so many women, who are diagnosed later in life  with AS describe encountering along the rocky path toward self-awareness, understanding and acceptance , was written by “Manda” .

 

 

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The Importance of Identifying Asperger’s Syndrome / High Functioning Autism in Adults

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“Growing up with undiagnosed Asperger’s Syndrome can be traumatic for many individuals.”

Many adults with undiagnosed Asperger’s Syndrome are usually keenly aware that they do not ‘fit in’, yet are unable to either express or understand exactly what it is that makes them feel differently to others.

For this reason many undiagnosed adults develop negative perceptions of themselves as “weird”, “crazy,” or “broken.”

Despite these negative self-images, many undiagnosed adults are able to hide their difficulties by developing coping mechanisms, such as mirroring or mimicking those around them in social settings.

They are therefore seen as being able to engage in the everyday routines of life such as working, having relationships, getting married and having children.

Yet though they have the ability to apply such coping mechanisms, many individuals with undiagnosed AS, are never able to shake off the underlying awareness of themselves as inherently ‘different’ to those around them.

Ironically, the very skill sets that adults with undiagnosed moderate to mild Asperger’s apply, in order to try and ‘fit in,’ have meant that they have flown “under the diagnostic radar”.

Other individuals with undiagnosed AS, who have not learnt such skill sets, may show greater signs of having social communication difficulties.

This can make them more susceptible to situations such as chronic unemployment and social isolation due to the fact that they may be mistakenly perceived as people who are deliberately anti-social, argumentative, objectionable or aloof loners who crave only their own company.

In reality, these people may be individuals who are displaying the lack of social skills required to communicate and act appropriately, that make up the characteristics or traits commonly described in Asperger’s Syndrome.

It is now well established that individual with AS may display varying degrees of some or all of the following characteristics:

A lack of social skills which manifest in inappropriate social approaches, responses or social awkwardness.

Difficulty recognizing the facial expressions or emotions of others.

Difficulties in considering or understanding others’ viewpoints.

Limited interest in friendships


Difficulties with being able to communicate their ideas, thoughts and emotions.

Difficulties in comprehending and following social reasoning and adhering to the status quo.

Difficulty with transitions and changes.

Hold a strong need for routines.

Narrow range of interests or idiosyncratic special interests.

Be overly sensitive to sounds, tastes, smells and sights.

Have motor coordination difficulties.

Experience difficulty managing their own negative feelings, especially anxiety, anger and depression

Adults with undiagnosed AS are susceptible to experiencing high degrees of stress, frustration, confusion and anxiety due to their awareness that they do not ]fit in’.

These additional difficulties have often been misinterpreted, misdiagnosed, misunderstood and mistreated, especially when their underlying AS is undiagnosed or not adequately understood.

Some of the most common additional difficulties include:

Angry outbursts (physical or verbal aggression, verbally threatening behavior)

Agitation and restlessness

Increase in obsessive or repetitive activities, thoughts, or speech

Low mood or depression

Apathy and inactivity

Unfortunately many professionals who are unfamiliar with AS often only focus on the surface symptoms and behaviors that an individual with undiagnosed AS may display.

This leaves individuals with undiagnosed AS at risk of being incorrectly diagnosed with conditions such as:

Personality Disorders

Psychosis

Bipolar Disorder

Obsessive Compulsive Disorder

Mood disorder

It is therefore essential, that in order to prevent individuals with undiagnosed Asperger’s Syndrome from being incorrectly diagnosed with conditions, treatment plans and medications that will not help them, that a thorough Autism assessment must be applied to adults who fall within this criteria.

A proper diagnosis of AS can better help adults put their difficulties into perspective and enable them to understand the underlying reasons for their lifelong struggles.

Correct diagnosis and effective treatment can help improve self-esteem, work performance and skills, educational attainment and social competencies.

More importantly a correct diagnosis can trigger both a journey of self-discovery and a healing process for the individuals concerned.