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New here - Diagnosis seems like a can of worms.

Eowyn

My son (16 years) has been diagnosed with ASD about a week ago.  This wasn't a huge surprise - but what is a surprise is the fact that it seems to have opened a can of worms.  Instead of feeling like my husband and I (and our son) are going to be well supported, it seems there is very little support/advice.  Hopefully, I'm jumping to conclusions and it's early days, but I don't want to be naive to the reality that we're going to have to fight a lot harder for our son than we at first realised.

So thankful for websites like this one.

  • Thank you, that's useful advice.  Appreciate you explaining all that for me.

  • As your son's carer, you are entitled to an assessment of need by social services.  From that you can get respite.  You can also apply for DLA for him (Disability living Allowance) and also for yourself, you can apply for Carer's Allowance.

    Social services will be the most likely place of support, and  they can signpost you to other services as well as liaise with other services for support for both of you.

    Having home-educated both my ASC girls for the last 3 years (one now back in school and the other due to start) I do know how very challenging it is.

    Home-educating probably means social services will be more inclined to look into respite because you get no break.

    Also, if you have any health issues yourself you can also request an adult social care assessment which may go further with support than a carer's assessment.

    Your local parent partnership organisation may be able to offer advice and signpost you to other support too and don't forget there is also always Citizen's Advice.

  • Evening,

     

    I must admit, I'm truly shocked at what I'm reading.  My main reason for seeking a diagnosis for my son (we've been 99% sure what the problem was) was so that both he and I (because I'm kind of going round the bend dealing with his 'funny ways'!) could get support.

    Appreciate your comments.

  • Evening :)

     

    Yes, I'm in England, yes my son is still in full time education - however I home educate him, which I fear is going to complicate things.

    Appreciate your thoughts and ideas.  Thank you

  • Even for young children with ASC there is virtually nothing.

    Our 8yo is awaiting CAMHS support for anxiety and they haven't supported her.  I had to fight for her place in an ASC unit.  The school promised 1-2-1 in mainstream and then decided to lie about funding not being available, and expected her to manage in mainstream with nothing.