Another diagnosis to deal with

Today has been an emotional day for me and my husband.  Today we have been told that our beautiful 9 year old daughter has aspergers syndrome.  I am not surprised that she is.  You see, ever since she was a baby there have been odd things here and there which didn’t really concern us too much at the time as she appeared to be meeting her milestones.  It was as she moved on into school that our concerns started to mount: the social difficulties, sensory issues, learning difficulties and her extreme shyness.  So, just as I had done with my son a few years earlier, I expressed my concerns to her school who a year ago placed her on school action plus and sought advice from our local education department.  Subsequent assessments showed low auditory and visual processing difficulties, so low that they thought she had a hearing problem.  However, hearing tests proved her hearing was within normal limits.  Next came a speech and language assessment which revealed a lack of expression and difficulties in verbalising her thoughts. 

And that would have been as far as the school would have gone if I hadn’t, once again, pushed for further assessment.  But ‘push’ I had to.  The school that had so failed my son a few years earlier were once again refusing to acknowledge my other concerns about my daughter - the social difficulties, the unusual responses to noise and crowds, rigidity, anxiety, her literalness etc.  So at a recent meeting when I read out from my list of worries, well aware that I was describing an autistic disorder, the SENCO (Special Educational Needs Co-ordinator) and the specialist teacher just turned on me and told me that my daughter’s behaviour was learned behaviour from her elder autistic brother and that I was an over-anxious mum. I was no longer prepared to tolerate such  unprofessional comments and I retorted that no parent would want to be sitting where I was then, talking about my special needs child and seeking support.  They went quiet and after a while they reluctantly agreed to our application for an assessment for an autistic spectrum disorder but you could tell that they didn’t see the point in doing this.  They made me feel like a time waster.

Well the assessment did happen.  It happened this morning; my daughter in one room undergoing various tests and me and my husband in another exploring her developmental history.  This afternoon we returned and were told about her aspergers syndrome.  They also expressed concern about her low mood and have referred us to CAMHS (Child and Adolescent Mental Health Services) for a check-up.  This worries me a lot.  At the same time discussion centred upon her education and how unlikely it would be that my council would give her a statement as her academic ability is apparently not low enough.  At the moment I am more upset about this than her diagnosis for I suppose I have got used to living with autism in my family through my son and I could see the triad of impairments in my own daughter, albeit differently.  Today was a confirmation of that.  Her diagnosis does not give me a sense of relief as I experienced when my son was diagnosed three years ago but a feeling of very deep worry for her because I have seen just how unsupportive our British education system is for children like my daughter.  What disturbs me most though is the attitude of my council who do not act for children like mine until they end up in crisis, either out of school or suffering from mental health problems.  Is it right that in the 21st century our education system exposes our children to greater emotional and mental harm just for the sake of saving some money?

It looks like I have another fight, this time for my beautiful aspergers girl.

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12 Responses to Another diagnosis to deal with

  1. Aspie in the family says:

    >Hello Tilly. Thankyou for commenting and apologies if I haven't replied to your comment till now; usually I'm really prompt with replying. Sorry to hear about the difficulties you are having. It really annoys me that the level of cognition is often cited as a reason for giving a statement. Yet, as you say, our children with sensory, ASD and processing problems can have a lot of problems coping in school. Many of them need much more support than they are getting.

    Hello Fi and thankyou for contributing to this post and for the lovely complement. Sorry to hear that noone is listening to you. Its horrible when people don't listen; so frustrating and unnecessary. It really annoys me that parents are treated like this, because I think many parents are the experts on their child. Its about time some professionals took this view and worked with us, rather than against us. Hope you get somewhere with your daughter. All the best.

  2. Fi-Wonderfully Wired Mum says:

    >Ooh OOh OOh!
    It's like you're writing MY story!
    My middle child – and 8 yr old boy has aspergers and my youngest son (5) was just recently diagnosed with AS as well. I have lost count of the number of friends/professionals who told me that it was copied behaviour…pffft!

    Our 11 yr old daughter is SO specrtrummy but no-one wants to listen.

    I applaud you for being such a wonderful advocate for your daughter and pushing for people to actually listen..

    You rock! Your kids are in fine hands :)


  3. Tilly says:

    >Thanks for stopping by my blog. We have also been told that our son won't get a statement as he is doing ok at a cognitive level. How he manages to get through the autism, sensory issues and his language processing problems is beyond me! Do you have a Parent Partnership in your area? They may well be able to help in any dealings with the LEA.

  4. Aspie in the family says:

    >@jazzygal – thanks for your lovely comment – it does seem that all of us are fighting for services. Very tiring. As you say, I've got to keep strong in order to support my daughter. xx

  5. jazzygal says:

    >A difficult time for you but already you have done a great thing for your beautiful daughter…. getting her diagnosis. So well done you! Unfortunately it seems the same the world over when it comes to services for special needs and mental health. We always have to fight, don't we?

    Stay strong, you're doing a fantastic job.

    xx Jazzy

  6. Aspie in the family says:

    >@ Steph – you aren't bossy at all; sometimes it is easy not to see the obvious when you are so close to something so I appreciate your comments. It is a very up and down journey isn't it being a parent of a special needs child.

    @ Esty – thanks for commenting and I shall pop along to you blog very soon. I totally empathise with your position and I hope things are better for you all now. I continue to be absolutely appalled at how parents (and their SEN kids) are being treated in this country. This is one of the reasons why I blog to try and be part of something that can change attitudes towards parents and our SEN children.

    @Looking for Blue Sky – thanks for the lovely support; not feeling to bad today but I'm sure it will take a bit of time to fully adjust to all of this.

  7. Looking for Blue Sky says:

    >Your daughter has a fantastic mum, I hope you're feeling okay today, it's really tough getting a diagnosis, even if you are half expecting it ((hugs)).

  8. Esty says:

    >Oh this sounds so familiar. Our 14 year old son was diagnosed with Asperger's 2 years ago. We had to go private because CAMHS told us there was a 18 month-2 year waiting list for the assessment tests. We were told that he wouldn't get to the top of the waiting list unless he was self harming or attacking people! Seriously! He was school refusing due to sensory and social issues and basically the school and LEA were pointing the finger saying we were bad parents, threatening to sue us and send us to parenting lessons! This despite the fact that my husband and I have been teachers for more than 13 years and damn well know the difference between a child who is being naughty and child with undiagnosed additional needs. When I pointed this out to them they more or less accused me of using my experience of working with two boys with Asperger's in order to know the symptoms and project them onto my son…as you say, and I did, like ANYONE would WANT their child to have these difficulties :( It wasn't even us who first suggested Asperger's, it was a lovely lady at CAMHS, where I had gone in desperation because I thought he had an anger problem. The school and LEA also didn't take any notice of the fact that our eldest son has 100% attendance and is top of his year academically. It seems England's 'professionals' like to point the finger at the parent first. I, too, have blogged our experiences on and off if only to keep a record of the appalling way we have all been treated. I found your blog after a friend re-tweeted something you wrote on Twitter. I'm going to go back and read it from the beginning.Best of luck to all of you xx

  9. Steph says:

    >This sounds like a difficult time for you, so remember to try and take some time for yourself and not push too hard constantly. you need to be in the right frame of mind to do the best for them. Sorry if that sounds bossy, and I know it's easier said than done – I go through those up and down cycles myself! But sometimes it takes someone not so close to point out the obvious to me….. I feel for you on the mental health front – that's probably my greatest worry as my girl gets older. As she's not yet 4 I can't give any helpful advice, just keep my fingers crossed all works out for you x

  10. Aspie in the family says:

    >@ Susan – thanks for your support and lovely comment – it is reassuring to know there are so many families like us out there.

    @ Applies and Autobots – thanks also for your lovely comment – its a horrible feeling knowing we have to fight again but I know that once we have come to terms with our daughters difficulties we will try our best for her.

  11. Apples and Autobots says:

    >Ah, I understand all too well. Hugs to you, internet friend, and I know that your daughter will be fine. She has a great mom to fight for her.

  12. Susan says:

    >So sorry to hear about the hard time you are having at the moment. C was diagnosed at the age of 3 in Scotland and we got a lot of support, early intervention, an auxilliary to go into nursery with him and he was in the process of being statemented. I moved to England just before he started school..and NOTHING! They will not statement him as he is too high functioning and have had to plead with schools to get him the help he needs. Every school has a special needs register and all pupils on that should get an IEP, whether they have a statement or not, so make sure that she is on it!

    Know its not easy but your children are very lucky to have a wonderful mum like you to stand up for their rights..and just remember, you are not alone.

    Take care xxx

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