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Hi from Jo!

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jo


Hi from Jo!

Sat 14 Mar 2009 8:08am

Hello everyone, 

Im jo, mum to Alice (15) and Fabian (Fab).

Fab is  3 years old, and despite having been assessed, and us having been 

referred (and almost finished) the Earlybird course, he is without a diagnosis.

This is because he is a happy, and to a certain degree, quite willing (if not

very able) to engage with others for a limited time. The consultant says that we must wait until he

is 6 years old before he will have developed sufficient language to be properly

tested, but for the meantime will say he has 'autistic traits'.

Fab is able to speak but uses language 'differently'. He used to 'lift' language 

phrases from Bob the Builder, (he used to break everything so we could 'fix it') 

but he currently uses Dora the Explorer (everything gets lost so we have to 'find it!')

'Off the record', he has been diagnosed by an Ed Psch, and senior Speech Therapist,

who were unwilling to go over the head of the consultant...

I don't want to become a tormented soul, looking for answers all the time, loosing 

sight of the lovely little boy that we have. That's not what I want, but I need more

answers than I have. I'm hoping that other's have perhaps similar situations, and maybe

know some of the answers.... 

  

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4 Comments

  • NickyB's picture

    Hi Jo

     My son is 6 and has high-functioning autism, and he uses phrases from tv programmes too. At the moment, he's communicating mainly using noises from the film Wall-E, which was sweet at first but it's now becoming difficult to engage with him in any other way. He can use normal words and phrases. but only in a limited way, and usually when he wants something!!

    He can be engaged in conversation, but we have to use his obsessions to start with (numbers or cars) and then try to steer him gradually onto what we actually want to talk about. The teachers use this approach as well, when they are trying to get him to do his work. He's gradually getting the idea, but it is a very slow process.

    I agree with you that it is very easy to become focussed on the autism, and lose sight of what a wonderful individual he is. We try to do something at weekends which allows us to just have fun and forget about his condition, like just going for a walk in the woods, or doing some cooking together.

    I hope you find some of the answers you are looking for soon,. Take care.

    Nicky x

    Nicky - Community Champion
  • jo's picture

    Hi Nicky! 

    Thanks for your post... your son sounds like he may use language a bit like Fab.

    He's a little older at 6 years, and I'm wondering if you have known his diagnosis of

    high-functioning autism for a while, or if this has just happened (we have been told we

    won't know until Fab is 6 years old). It's not that I'm ever so impatient, it's more that

    it seems some people know and can't tell us, and some people don't know so can't tell us.

    And I think I know but can't get anyone to say. This all matters because we already know that

    working with the LEA is going to present with difficulties. Given that we heard last week at 

    a meeting that only 25% of children with a diagnosis of autism have a statement in Devon,

    it makes me wonder how we will get the support without the diagnosis (autistic traits doesn't

    feel like a diagnosis.... certainly not one the captures the essence of the difficulties he has in

    making sense of the world).

    Thanks for your reply, again, sometimes I feel like Fab's condition is alien to those that are supposedly

    expertise in autism, and yet, I'm beginning to think Fab's difficulties are not exclusive to him...there may be 

    others a little like him out there...  (and that is not such a lonely place for me.) 

    Thank you Nicky.

    Jo  

     

  • NickyB's picture

    Hi Jo

    S was diagnosed when he was 4. He was initially referred whe he was only 3 by one of the staff at his nursery school, and no-one ever said that he was too young to diagnose. His problems with communication and social interaction are very obvious, and I was not surprised at the diagnosis at all, even though I'd only done a little bit of research at that point.

    All I can suggest is to keep pestering the specialist, and get as much information as you can about the condition - they seem to take more notice if you speak to them in 'their language' if you see what I mean. The National Autistic Society website is a good source of general information. I don't know what it's like in Devon, but I know it's possible to get a private diagnosis in Kent (although it's very pricey, and I'm not sure how much weight it carries).

    As far a statementing is concerned, it's not necessary to have one in order to get the help he needs at school - S is on a support program (School Action Plus). I don't think he even needed a diagnosis for that. Having said that, we are now in the process of (hopefully) getting a statement for S as his needs have become more complex as time has gone on and the school feel they need a bit more help.

    Hope that helps

    Nicky x

    Nicky - Community Champion
  • MarcoS's picture

    Hello Jo,

        Welcome to the boards.  My son was also using (and sometimes still does) sentences from TV programs.  Actually, I can tell you, my son could probably recite most of the commercials if he thinks you'd find it funny.  His speech has improved a lot since then, but I think it is somethine pertinent to a lot of kids with speech issues.

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