Saturday, 25 April 2009

Autism - Olly's Tale

To highlight that April is Autism Awareness Month this is Olly's Tale.

Olly was diagnosed with Autistic Spectrum Disorder, 'Asperger's Syndrome' High Functioning, Possible Pervasive Developmental Disorder and Nocturnal Enuresis just before he was nine years old. It had taken 7 1/2 years to get to this conclusion, many assessments, meetings with SENCO's, Councilors, Psychologists, Doctors, just to name a few. Nobody was willing to offer an opinion or any help.

Olly was labelled a 'trouble-maker' from the unbelievable age of 18 months.

He spent three afternoons a week at a local Nursery, (my daughter was almost a year old, so I had two babies under two, plus a teenager), so for a bit of respite, Olly attended the Nursery.

One day we had a call summoning us to an emergency meeting, so we raced down there and was shown a playroom, which they had left exactly as it was, so we could see the damage that our son had done.

Our 18 month old toddler had flung chairs across the room, breaking one of them and his rage was so bad that he had ripped up paper, chucked paint around and made a huge mess on the floor. They had had to isolate him from the rest of the children. I could not believe my eyes nor my ears! How could this tiny little human have created all this chaos?

The Manager asked us to remove Olly from the Nursery. Basically they were expelling him. I received advice from someone who was quite high up in child services who said that the Nursery were not allowed to do that; they were not allowed to just take the 'good' children, especially as we were paying a fortune for the privilege of a place.

After flatly refusing to remove Olly, the Nursery were obligated to bring in a SENCO team that helped and advised them. They put up rotas and charts, not just for Olly, but for all the children, so everyone knew what they were doing and when. This team were on hand for a good year or two, implementing new procedures and advising the Nursery constantly.

Olly can still remember that dreadful day and used to get very upset about it, but I used to say, that it was a good thing it happened because it not only helped him but in the end it did help other children as well.

This kind of disruptive behaviour and the labelling of 'trouble-maker' followed Olly through his school life, until he was diagnosed. The primary school previous to his current one was dreadful, because they really did not have a clue how to handle him. I was being called to this particular school three times a week, every week, to have meetings with the Headmaster, and various SENCO people because they were at a loss as to how to deal with him. He was excluded (suspended) from school on many occasions.

Eventually, we were referred to a Consultant, and after many more assessments we went to meet her and she concluded her diagnosis. Immediately afterwards she got up and rushed off to a meeting leaving Olly and I sitting in the room watching her leave! I called out after her 'Oh, have we finished then?'

Olly was really upset and crying and I was furious with the way it was handled. We both had so many questions. Now we know what it is, what do we do about it? Who is there to speak to? What do we do now?

Somehow or another I managed to get in touch with some experts and put myself on a course so I could understand the 'theory' of autism and the workings of it. It was extremely interesting; the way Olly's mind works, how he thinks, why he reacts as he does, why his speech is as it is and I shall always be grateful to Dr Hayley Pringle - the young slip of a girl, who helped me tremendously during those first few months. She knew the 'theory' inside and out, and passing on her knowledge gave Olly and I a better understanding, and the ability to cope with certain situations much better.

We moved house again and changed Olly's school. His current school is brilliant, very supportive, they implement certain things for him and he feels safe and happy. Nothing is perfect and it still has its moments, but when we all work together; the school, the parents, Olly, the doctors and the professionals it does create an environment that is tolerable for him, and because of this he has been able to excel at most of his subjects.

Because he is high functioning he is academically quite clever, but he just cant understand the world we live in, the way it functions and why everything is so haphazard. There is no logic.

Olly's mind and that of others on the Spectrum work logically - like computers. If you think of how a computer works or shows you data, everything has it's place and it is just where you left it. It has to work in a process. If it is disrupted or moved it doesn't like it and occasionally it breaks down, but when it works it is phenomenally brilliant.

Another way of looking at it is the Autistic Spectrum is rather like a triangular piece of cheese placed on its side. People can be anywhere on this spectrum - at varying degrees - although the underlying line is the same. Hence why there is differing abilities and why each person on the spectrum is different from the next.

You hear so many negative things about Autism, but it brings
wonderful things too.

When Olly gets upset and rages about his 'Arse-burgers' as he calls it, I say to him that it is like a metal sword. One side is dull and murky and things are unclear, but the other side is dazzling bright, it enables you to do things the rest of us only dream about. To see the world differently, to have no fear, to think differently, to be honest, to have incredible ideas, to be creative, unlimited and unique in ones thought processes. Surely being able to look at the world from a different perspective is a much greater gift?

Or would you rather just be a plain metal sword?

There has been much written about famous people who were believed to have been on the Autistic Spectrum, and they are such because of their unique perspective on life or for discovering something the rest of us just couldn't see.

And I for one wouldn't be without it.



  1. Thank you for sharing this; the sword analogy is beautifully put (especially for a boy to understand and be encouraged by! :)
    I am just finding out that my 4 1/2 year old has SPD, which is undecided whether or not this falls on the spectrum or not. I'm just figuring out what all of this means for us.

  2. Hi CanCan. Thanks for your comment. I've just had a look at SPD on the NAS website. SPD is on the outer spectrum. I'll try and send you a link to your website so you can have a look.

    RM x

  3. I can't believe it too so long for them to diagnose Olly - you poor thing. You've handled it so well... By the way, I've tagged you over at mine. Hope you don't mind!

  4. My brother is autistic and never spoke until the age of 5. He just came out with fully formed sentences. He is also blind, with epilepsy and other health problems. Amazingly, at the age of 40 he lives in his own flat. His childhood was incredibly traumatic and he did many compulsive things. He's calm now and not medicated. I call him the buddha of the family because is he so wise.

    On another point, I'm so glad to see that Autism Awareness is so high profile this year. When I grew up, I spent a lot of time raising money for autistic adults. I got sick of people asking why we needed to raise money for my 'artistic' brother...

  5. I can't believe it took so long to diagnose too, you must have been very, very frustrated. Good for you for figuring it out yourself. My nephew has Asperger's-- he too is very bright.

  6. Nix,
    Thanks for your comments; Autistic people have the most amazing gifts, like your brother, but it must have been really hard for all the family as 40 years ago nobody knew a drop what is known to today - so thank heaven for progress! We're still a long way off, but we're getting there.....

    Thanks MM. It took too long a time, but we got there eventually. Never a dull moment with Asperger's - always keep an encyclopedia handy, so you know what their talking about!

  7. Funny you say that, it was very unusual not to put austistic kids in a home and it was called a middle class malaise, much as ME was in the 80s



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