Thursday, 31 March 2011

I never thought it would happen to me but it did...

For those who do not know on Saturday it is World Autism Awareness Day 2011. This is why I have been flooding your newsfeeds, your Google Reader and Twitter feeds with autism related stories and events. So what does it mean to you and to me?

Well, not a lot really. No radical changes to legislation will be made. No lives enriched by it. No action will be taken, spurned on by this one day event. This sounds a bit harsh but is it true.

World Autism Awareness Day simply put is all about making people aware of what autism is, how it affects those with the disability and how it affects the lives of those around them. So raising awareness is key to the event and all that is required of you, the reader. I feel as do many parents of kids with ASD that too little is done to promote awareness of autism and it's related disorders. While the press may occasionally pick up on a story once in a while, these stories often related to tragic tales or to one off incidents. Not all kids on the spectrum are severely impaired by ASD, some, like my son Alfie appear, to all extents, normal. No kid on any part of the spectrum will ever lead a normal life. Will ever sail through life without facing hurdles due to their complex needs.

All I am asking to achieve from now until Saturday day is to have one person like this post. Just ONE person. Whether it is by retweeting it on Twitter, Liking it on my personal and blog Facebook pages or to leave a comment here. If you do that then I will know that I've done my bit, that just a tiny bit of difference has been made because one person, even if it is just one person has acknowledged the existence of autism. 

One step up from this very meagre goal is to help you to understand what autism is. Eleven years ago, I knew nothing about autism. I'd heard the word mentioned but because I thought it wouldn't affect me or my family, I had no reason to learn what it meant. I learned the hard way. I discovered that autism is very real and I had no choice but to accept that I would spend the rest of my life learning what being autistic actually entailed. If Alfie hadn't been diagnosed with autism, perhaps I would have sailed through life, not knowing and not needing to know the complexities this condition brings. If it doesn't affect you, the general attitude seems to be, what's the point in worrying about it?

Here is information from the Scottish Autism site that details what autism is and how is manifests itself in some individuals. I know it is wordy and heavy reading but please take five minutes to read this or read this leaflet HERE.

The autism spectrum is the collective term for a range of conditions that impact on an individual’s social communication, social interaction and social imagination and flexible thinking . Individuals on the spectrum are also likely to have sensory and information processing difficulties that can range from subtle to complex .

The autism spectrum encompasses individuals across the cognitive ability range. In other words, a person may be on the autism spectrum and have a learning disability or may be of average to sometimes, high intelligence.

 People often associate autism with that which they can see and observe, in other words a person’s behaviour. It is however important to recognise that autism is not a behaviourial problem and that observable behaviours arise as a result of a range of complex and interacting factors.  

Autism is associated with “qualitative impairments” in three areas, namely, social communication, social interaction and social imagination and flexible thinking. It should be noted that a growing number of people on the autism spectrum reject the term “impairment”. It is used here to reflect the terminology used in the current diagnostic criteria.

The implications of each of these areas will vary across the spectrum and from person to person. These examples are intended to be indicative rather than prescriptive and are given to illustrate the diversity within each area of the triad across the spectrum. It is also important to bear in mind that the impact from each area is not distinct and that a degree of challenge will be evident in all three areas.
Some examples of Social communication issues are shown below.
  • Limited or absent verbal language
  • Difficulties using and understanding appropriate body language
  • Limited motivation to initiate and sustain conversation
  • Limited original or self generated language and or use of learned or echoed words and phrases with varying degrees of relevance to the context
  • Literal understanding of language
  • Strong desire to verbally interact but with a focus on restricted interests, individuals who have such tendencies are likely to attempt to dominate conversations and are often very able to divert any conversation back to their preferred topic.
John is 7 and has autism. He has no verbal language but seems to understand some words and very simple instructions. He is especially responsive to language based on activities that are motivating for him such as swimming. John has been taught to make vary basic choices by introducing him to a visual communication system.
Sarah is 15 and has Asperger’s syndrome. She is very talkative and can have long and detailed conversations. However she has very little interest in conversations that are not focused on her current passion which is the Roman Empire. She will respond when people try to have a conversation with her however she will very quickly introduce her subject regardless of what has gone before. Sarah will approach unfamiliar people in shops and at bus stops to talk to them. She becomes very confused and distressed if they do not respond.
In terms of social interaction the following may be observed.
  • An apparent lack of desire or motivation for social engagement
  • An apparent lack of understanding of the feelings, intentions and motivations of others
  • Initiation of social interaction is rare but may respond and comply to approaches
  • May have a strong desire for social engagement but be unaware of social rules and how to apply them depending on the context
Kirsty is 5 and has Asperger’s Syndrome. She has just started school. She is happy to be in the playground with the other children but has very fixed ideas about who should play, what games should be played and how. She finds it difficult to take turns and becomes very distressed if the other children want to do things differently.
Ann is 24 she is an adult with autism and severe learning disability.  One evening she was lying along the sofa unwrapping and eating sweets. Due to her difficulty in understanding the needs of others she would not usually share them with others. It was therefore surprising when she reached out and tugged the hand of a member of staff who was sitting close by. However it became clear that the purpose of this was not socially driven and instead of being given a sweet she formed the staff member’s hand into a cupped shape and then proceeded to push the empty wrappers into it, finishing by giving it a push in the direction of the waste basket.
Malcolm is 36 and is a very able individual who lives independently. He greeted a visiting professional returning from his holiday by saying ‘Peter, I know I’m meant to ask you if you had a good holiday, because I’ve been told that you will like being asked this, but I don’t understand why I should say this because I’m not actually at all interested in your holiday’.

The idea of social imagination is complex; we can be sidetracked by thinking that imagination is limited to creative, aesthetic or play activities. For people on the autism spectrum difficulties can be noted in such areas but the implications are more pervasive. Some examples are that individuals:
  • May find it difficult to adjust their behaviour and respond to different situations
  • May find new and unfamiliar experiences stressful, threatening and confusing
  • May resist change or exposure to new experiences due to limited ability to generate a concept or form an idea without a point of reference.
  • May find it difficult to recognise emotional expressions and body language in relation to the social context.
Sally is 6, she has autism and a learning disability; she loves to go to the local park close to her home. She enjoys playing on the swings and other equipment. Much as she loves this activity she becomes very distressed if her parents or teachers try to take her to an unfamiliar swing park. This can result in very distressed and difficult behaviour that can have an effect on the rest of the day. Sally has a similar reaction when her mum tries to take a different route to school in the car or goes round the supermarket in anything other than the order Sally is used to
Kenny is 17 years old and has Asperger’s syndrome. His dad suffers from severe headaches which are exacerbated by Kenny’s loud and repetitive questioning on his favourite topic. It was only when Kenny could see his dad in bed that he was able to understand that he was unwell. It appears that Kenny could not innately understand and empathise with his dad’s condition, however if he actually saw dad in bed in the day time Kenny then had a concrete cue that he was unwell and was then able to adapt his behaviour.

Now I know that all of this is a lot to take in. That even after all of the years we have lived with this, we still find new things and at times struggle to understand autism. So if you glossed over that section of this post, then read my blog to see how autism affects our lives on a near daily basis.

There are other things you can do:

You can TWEET for autism

and you can LIKE my ASD related posts. There will be plenty to choose from in the run up to Saturday.

Thanks for reading,

Fran. xx


  1. Super in-depth post to raise awareness Fran. My Sister looks after children with Autism so it's close to my heart although not directly in my life x

  2. Even with a diagnosis, and evidence of Nipper's autism in front of me every day, I still struggle to get my head round the 'triad of impairments'. This explains them really well.
    I'll be in town doing a 'tin shake' for our county autistic socity tomorrow. Hope it doesn't rain!

  3. I've just written a very brief note on my blog about WAAD, scheduled to be published tomorrow (on Tilly Tatas). I've added a link to this post as you have highlighted everything so well. Hope that's ok. If not then do let me know.

  4. Thank you for helping me understand more about autism. There really is such variance to the condition, far more than I had realised.

  5. so complex, excellent post - does exactly what it sees out to do - raises awareness, increases understanding - thank you

  6. A well written and informative post. One of my cousins has autism, so this is a cause close to my heart too. Thanks for sharing this with us for the Maternity Matters Meme xxx

  7. Thank you all for your lovely comments. xx


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