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lost in the whole asesment diagnosis procedure

rebs11

Hi im Rebecca im a 27 year old mother of two ,I have a 11 year old daughter with aspergers traits and a 8 year old boy .My Daughter has recently been assesd and no diagnosis was given however she had difficulties in areas known to aspergers syndrome im so confussed ,i have no support and im at my wits end Primary school have shown little intrest or support in my daughters welfair and they have been non too forth coming with information . Her behaviour over the summer holidays has plumited she will not play out or interact with other children and my boy is now copying her behaviour .i only have a limited financial budget to do activitys which she will participate and going to parks and such they just sit by my side and and are unintrested which then causes her behaviour to become challenging if i take her to her freinds houses she rarly interacts with them and complains she is boared other children find her odd and soon tire of her she constantly falls over and complains she is in pain however after test nothing comes back i wonder if it is her sensory problem??? when she is tired she crys she is unwel everynite when i can see clearly she is tired  this goes on till 3am most nites .  due to her lack of co ordination and difficulties organising she  still needs help dressing and with simple tasks im often late for work and struggling to cope in all areas any advice would be greatfully recieved .

  • If your daughter doesn't want to socialise with other children, then that is perfectly fine. She, and I'm sure you too, will feel better for it. Forcing people with autism conditions to socialise is almost like being told to do a job you are not very good at, while held at gun point. It is incredibly stressfull, and the after effects take a long time to recover from. I once read a quote, that "to cure Asperger's syndrome in a child, leave them alone in their room". I may not have quoted it word for word (from memory), but the essence is there. Help her to channel her energy into something constructive and educational (which I'm sure she will love!!). You don't neccessarily need a big budget. Just ideas. And knowledge.

    The diagnosing of autism conditions is still relatively new, as opposed to, say, a broken arm. A lot of professionals are still learning about the conditions, and what there is to learn is constantly changing, too, as more gets discovered. You familiar with the term "medical practice". When knowledge is ever evolving, you can only practice. It's only when something stops changing that you can become a master.

    Just realised i'm "waffling" on. Sorry.

    Try and get a second opinion, from someone else.

    Regardless of if/what/when the outcome, read books on parenting children on the spectrum. Even if you still don't get a diagnosis, there's nothing stopping you from using the techniques found in these books. Especially if they work (which I'm sure they will).

    And lastly, don't be afraid of letting her be by herself. Suffocate her, and she will fight free (what's she's doing now). Watch from the sidelines, and she'll do what makes her happy, and you will see it when she get's absorbed Smile

    Sun Tsu (greatest strategiest of all time), once said, "Know yourself, Know your enemy, Know your environment."

  • Hi Rebecca I'm Shelley, mum to an adult son with Aspergers, Dyspraxia and ADD. I really feel for your situation, I'm facing trials of my own at the moment but that's another story.

    I had problems with my son and sleep when he was younger too, although he usually fell asleep before 3am that must be so difficult. Has your daughter got a Statement of Educational needs? I can't remember how we got ours but I know either you or the school need to request it. Is there a Special Needs Co-ordinator at her school? If so, perhaps you could ask to speak to them about how to proceed, and share your daughters school issues with them.

    Have you applied for Disability Living Allowance? This is a benefit that doesn't affect any other benefits you get so it's really useful and the extra money will make things easier.

    My son is always complaining of feeling unwell and then when I ask him his symptoms it boils down to feeling extra tired. I'm guessing your daughter's sleep problems cause the fatigue. She may have Dyspraxia too which makes her clumsy and prone to falling.

    Definitely the way forward though would be to see the SNC at the school as a first step if you haven't already done so. I know life with a child with an ASD is hard but coming on here and knowing you're not alone is a big help too.

    Good luck