Monday, 30 August 2010

A. A: A's Autism pt.1

I had been wanting to write a post on autism for a while now but had been swithering over what to say, what to write about, what point was I trying to make by posting on the subject and so kept putting it off. The truth being I still do not know what to write about autism and our experiences of the condition. I suppose I should use this time and safe to talk about how it has affected us, how we cope with it and what it means to us. Now, when I say us, I refer to us as a family unit but I'm not writing from a self centred viewpoint it's just that A finds it difficult to articulate how he sees himself in relation to his peers, how he thinks or perceives that his autism affects him. It is precisely this issue i.e A's self perception, that has got me thinking about A's autism over the last few weeks. Now seeing as this is the first I am really mentioning about A's autism, this may take a while... bear with me!

When you have a child with ASD in the mainstream education system, autism sits like a cloud over your head. When your child is not 'autistic enough' (I'll come back to this!) to warrant being educated in a specialist school the condition is like a cloud, or that is certainly how I perceive it to be. I can imagine when you have a child on the 'severe' end of the spectrum that the condition is like a shadow and one that you live in for the duration. This is not as dour as it sounds but in the sense that it's shadow is a constant presence and something that you adjust to because of this. In contrast to this I feel that having a child at the other end of the spectrum is like clouds, that you have days that are grey, completely overcast and some that have clear skies and sunshine. This can either manifest itself on a day to day basis or it can happen at specific point during his life. A's diagnosis and arranging nursery education was one such cloudy spell.

So from the top! When A was eighteen months the health professions worried about the development of his speech. By the time he was two he was being given various tests by various professionals, looking for the cause of his lack of speech.

NB: I should interject at this point to say that A excelled way beyond his peers at all of the developmental stages from birth to eighteen months so later speech development didn't appear to worry anyone for a while.

At age two and a half, the finally pulled me into a very dim office and said the immortal words "we think your son is autistic". Stunned by this revelation (I thought we were going in for more tests that day), I asked them to repeat what they had just said, just in case I had misheard them "we think your son is autistic". The conversational momentum had clearly gained speed so they continued; " we very much doubt that he will ever comprehend anything that you will say to him", "He will need educated in a specialist school", "He will never be able to fend for himself". I became hysterical, tears were streaming down my cheeks and the specialists in the room became puzzled by my reaction. "Erm...are you alright? Do you need a tissue?" I felt like a complete arsehole! Was I the only parent to have reacted like this to such news? Had they not seen a parent grieving as they life that they had planned out for their child flashed before their eyes? I knew nothing of autism and what this held for A's future. So that was the beginning of all of this and what ensued over the next few years was pretty intense.

Specialist after specialist came and poked and prodded at him and I decided to up my hours at work and start another job so I could send him to a private nursery when he turned three rather than rely on the education board to get their act together. I was prompted by a conversation with a woman at the hospital who ran a private nursery in the city. She said that she had worked with severely autistic children and all sorts of disabilities overseas as a teacher and now that she was running this nursery she would love to meet A to see if he was suitable for the nursery. After meeting A and taking my bank details, she decided he would fit in well and assured me that they would do everything to support him to make his time at nursery enjoyable and educational. I was urged to leave him and go and get a coffee for an hour. When I came back she said that he did really well and enjoyed his time there. Over the next few weeks we built up his time and everyday I was met with reports about how well he was doing. After the October break, I asked if I could spend a day observing how A interacted with the kids as I was planning on implementing a behavioural programme I had attended a training course on. This programme was about reinforcing correct socially behaviours in autistic kids, not correcting bad behaviour, about tackling that moment when in M&S Foodhall, your child points to a rather 'portly' lady and shouts at the top of his voice "would you look at the size of that woman! Mum! Mum! Come and see!" So I sat in the room while they continued their day. After the morning arrival, the children were ushered into the reading corner to get a story to start off the day. While all of the child made their way to the corner, A was sat down at a table with a member of staff while he played with some toy soldiers. When story time was finished I enquired about why exactly A was excluded from this activity, to which I was told, "Oh, he won't behave for a story so we make him sit it out". Despite my insistence that they include A in everything and arranging for specialists to come in to talk with them about strategies for autistic kids, he spent a good few months more at this establishment 'sitting it out' until I demanded yet another meeting with the manager. This same woman sat me down and said "you know, I have lots of experience of working with kids with disabilities and it is my opinion that A is not autistic but merely a bad boy". After going ballistic, we left and I reported the establishment and the management to the local authority. I spent the next few months teaching A at home and taking him to the playgroups and nurseries I worked at, waiting for another solution...


  1. I cannot even begin to articulate how shocking that is! Poor A! Poor you!

  2. What an emotional post and how frustratingly maddening it is to hear how you and A have been treated! As a teacher (and former TA) I have worked with a number of autistic children and I have to say that the training avaialble is simply not enough. Too many teachers are unaware of the best strategies to deal with children on the spectrum and those that can are very badly paid. Such a shame. I hope things have improved now?
    Ps thanks for linking up to facebook friday, will check out your page now!

  3. I had the opposite experience when it came to trying to get Max diagnosed. I knew by about 18 months that his speech was way behind, along with him having various behavioural... issues... but the health visitor and dr just kept saying "he's just taking his time" etc.
    It wasn't till my mum reminded me there's deafness in the family that I went to them saying I didn't think he was hearing as he never responded to me, and told them about the deafness in the family, that they eventually took me seriously.
    I'm not sure how his nursery are handling him at the moment... time will tell. He absolutely adores it there, and some of the older children seem to have taken him under their wings, and like to spend time with him.
    Time will tell I suppose...

    I can't believe what they said to you when they initially said A may be autistic... what a horrid way to break it to you! :(

    Just as well he's got a great mummy to be there for him. :)

  4. @GhostWriter: Thanks! Its getting better now. Swings and roundabouts. He has good spells and bad ones and is now gearing up to leave Primary school and go to High School. I don't know if I feel that he's ready thought.
    The FB Friday is a great idea. xxx

  5. @Marylin: I hope nursery works out for the wee man. I love reading up on his progress and I can relate.

    A too had hearing issues and has had four sets of grommets inserted and so that intensified things for him. Even now, years later he is still very visual instead of aural which is making the upper school difficult.

    It was a horrible way. What shocked me most was their presumption that I knew this was coming.



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