Is it time we asked for help...young adult daughter — Scope | Disability forum
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Is it time we asked for help...young adult daughter

nomy Member Posts: 7 Connected

So we're parents of a 19 year old daughter who was diagnosed with Aspergers 5 years ago. She started Uni last year but she's struggling so much. Stays in her room and won't go into the shared kitchen terrified in case she sees anyone and is starving herself as a result. All the predictable stress of moving from lecture to lecture etc and the in your face feeling that she's not fitting in. The Uni are really good and she has a student disability award, but she seems to be slowly sinking despite this. So we are starting to think we should give up trying to encourage her to develop into a life she just doesn't feel a part of and bring her home. It's breaking our hearts.

Now we know nothing about what she may or may not be entitled to, but there is no way on earth she could hold down a job. She needs total support from us and always has. Are there any benefits that she may be entitled to in the hope that eventually she just may be ready if we can take away the stress for her and maybe find some treatment or medication that works for her? 

Thank you.


  • poppy123456
    poppy123456 Member Posts: 31,142 Disability Gamechanger

    As she's a student then unless she's claiming PIP or DLA then she won't be entitled to any benefits in her own right. This is because students who are in uni usually have student loans and whether you take the loan or not, it's still counted as income for means tested benefits.

    If she doesn't claim either PIP or DLA then it will be PIP now because this replaced DLA in 2013. PIP isn't awarded based on a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors. Evidence will be needed to support her claim and a face to face assessment is most likely because most have them. See links.

    For a more detailed explanation i'd recommend you look at this link because it will give you more of an understanding of the descriptors, what they mean and the criteria.

    For help for your daughter has she has a needs assessment? You can refer her yourself for this and then someone will visit your home from social services to complete an assessment. This will then determine what help and support they can offer, if any.

  • nomy
    nomy Member Posts: 7 Connected
    Thank you so much for such an informative and thought out response. I've been away all day and only just had chance to log in. I'll give all the links a good read and try and take it all in.

    Much appreciate the time you gave to this reply.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @nomy, I understand that your daughter might find it really difficult around new people, but she could be entitled to a Personal Assistant who can assist her and hopefully over time make her more comfortable. I don't know your daughters needs and if this could work, but here is more information about it.

    If you have an further questions then please do let us know. :)

  • nomy
    nomy Member Posts: 7 Connected
    Thank you for all the advice. I've now done a lot of reading and think we'll go for a needs assessment first. It's now looking more and more likely that she will have to drop out of Uni. Things are just piling up now for her and she simply cannot cope. It's all a kind of brain overload for her. It's so sad to see and we just feel helpless.
  • Adrian_Scope
    Adrian_Scope Posts: 8,576 Scope online community team
    I'm sorry to hear that @nomy.
    I'm going to tag in @melaniethorley, our disabled student adviser who might be able to make some suggestions for you.
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  • melaniethorley
    melaniethorley Member Posts: 138 Pioneering

    Good morning everybody. I am sad to hear that your daughter is struggling at university @nomy but I do have a few suggestions:

    if she receives Disabled Students' Allowances - she can request a specialist autism mentor.

    she could access the university counselling and/or mental health services.

    join the university student union - either for a sports team and/or interest group.

    she can join our Facebook group - University of Greenwich STAART - this will put her in contact with many disabled students who may have other suggestions.

    the worst scenario is for her to move back home and transfer to a university close to home.

    feel free to email me if it would be useful:

    [email protected]

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @nomy, how are you and your daughter doing today? :)

  • nomy
    nomy Member Posts: 7 Connected
    edited October 2019
    Thank you for asking Chloe. 

    A little more info...

    Our daughter is in receipt of DSA and does also have a mentor in place. I was in uni yesterday and joined my daughter with her mentor meeting. So in short, the uni are providing a lot of support in so far as they can. But we are now getting very concerned for our daughters state of mind. She saw the GP last week who has started her on a low dose of sertraline (50mg i believe). But she seems to be going downhill even more. We have offered her ways out of the situation by deffering her degree, stopping altogether, home study, OU etc, but she seems consumed with confusion and conflict.

    As parents of a young adult we feel overwhelmed and helpless with nowhere to turn with little support. It doesn't help that we are hundreds of miles from family and friends up here in the NE of Scotland and as she is an only child I think we all feel desperate. And desperately lonely with no social life whatsoever. And that certainly doesn't help.

    We have looked for support groups, but even those options are extremely thin on the ground.

    Obviously we are prepared to do whatever it takes to de-stress our daughter, but have no idea how.

    I am so sorry to ramble on. I bet you regret asking now? ?

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @nomy, I am very glad to hear that the uni are trying to put support in place and that you were able to meet her mentor. I am however sorry to hear about her mental health, it cannot be easy to see her like this. 

    I do not have a child, but as a disabled young person myself I am in awe of everything my mum has done for me over the years and I am sure your daughter feels the same. As parents you are navigating the unknown, and being a parent of a disabled child does make it more complicated. However, you are doing an incredible job, you are fighting for her inclusion and her health. I know it might not feel like it, but you really are.

    I'm glad your daughter now has some options about how to progress in her degree and I am sure you will support her whatever her choice is.  <3

  • nomy
    nomy Member Posts: 7 Connected
    Thanks for the kind words Chloe. Family is everything. What is there in life if we can't nurture our own?

    I will keep this thread alive and report back when we have news. It's a kind of cathartic experience for me anyway. And if I can get down the words, it helps a lot! 

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    No problem at all @nomy, we'd love to hear how you get on and I am glad you find it cathartic. Please do writing things down on here whenever you need to. :)


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