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Support whilst waiting for a diagnosis support/guidance

Jazzy

Hi, I’m a guardian to my sister which is 14 and we believe she’s got autism . School have now back my thoughts and feelings up and put things In place to help with my thoughts and queries we’ve been on the waiting list for CAMHs now for quite some time, we’ve had 2 meetings now one to meet and introduce my sister and the second was a neurological assessment to be put through tho the neurological team for a decision wether they think the same. I’m really messaging today for some support regarding how we cope in the mean time, we struggling as a family with boundaries, constant fluctuations in behaviour, not realising when somethings wrong or realising when things have gotten too far on her side of things multiple arguments most days it’s just hard to cope with. For a family it’s all affecting our mental health and we’re clueless as of where to start. Anything will be much appreciated 

  • Jazzy said:
    I’m really messaging today for some support regarding how we cope in the mean time

    There is a lot to get your head around and Chloe has linked to some great resources.

    If you want to dig a bit deeper then there are quite a few books that can help:

    The Loving Push - How Parents and Professionals Can Help Spectrum Kids Become Successful Adults - Debra Moore, PhD, Temple Grandin, PhD (2016)
    eISBN: 9781941765296

    Asperger's Answer Book - The Top 275 Questions Parents Ask - Susan Ashley PhD (2006)
    ISBN 1402219776

    The following are more for your sister:


    Social Skills for Teenagers and Adults with Asperger Syndrome - A Practical Guide to Day-to-day Life - Nancy J., Ph.D. Patrick (2008)
    ISBN pdf eBook 9781846428449

    Social Skills Groups for Children And Adolescents With Asperger's Syndrome - A Step-by-step Program - Kim Kiker Painter (2008)
    ISBN pdf eBook 1846425190

    My recommendation is start with the links from Chloe then dig deeper with the books.

    If you have more specific situations or questions then you can probably get these answered well here, but for the sheer volume of information to process, the books are how I would do it.

  • Hello ,

    I'm sorry to hear that you are struggling whilst you are waiting for assessments. You may find it useful to have a look at our autism page on our website which has a vast amount of information. The page contains information on the basics of what the autism spectrum is, how it's defined in a clinical sense, and the characteristics of autism: 

    https://www.autism.org.uk/advice-and-guidance/what-is-autism 

    Individuals on the spectrum can often display behaviour that may be challenging. There will generally be a reason for this and it is important to try and understand the trigger for the behaviour when developing strategies. You may like to have a look at the following link for more information on behaviour and strategies: 

    https://www.autism.org.uk/advice-and-guidance/topics/behaviour 

     You may be interested in seeking some professional support regarding the behaviour. You can search for professionals in your area we are aware of on the Autism Services Directory: 

    https://www.autism.org.uk/directory 

    You might also like to take a look at The Challenging Behaviour Foundation website for further information and advice: 

     https://www.challengingbehaviour.org.uk.  They also have an information and support service which you can contact by phone or email – details can be found here: https://www.challengingbehaviour.org.uk/for-family-carers/family-support-service/ 

    All the best,

    ChloeMod