The struggles of University and living independently- newly diagnosed 21 year old daughter

Hi - I'm new to this site and would appreciate any advice or insight.

My daughter is 21, has always been shy, socially awkward, anxious. A gifted musician who is a beautiful witty person inside but you only get to see inside once she knows and trusts you. (Bullied at school, low self esteem etc) She delayed going to uni for a year, wasn't ready and that was all fine. She has always felt she wanted to do a degree in music and started in September 2016 at the age of 19. Moving away to live independently highlighted far more difficulties than the average first year student. Long story short she wasn't coping with her time management, cooking, washing, shopping and study. Her sleep pattern was erratic and she lost days in bed where she couldn't lift herself enough to get up. Academically the work is not a problem but her motivation and organisation was awful, she was missing lectures regularly, not meeting deadlines for the essays and she was losing ground and was ultimately given anti depressants for depression and anxiety and she took a leave of absence half way through.

University were helpful(eventually) in that she was assigned a mental health advisor and a reasonable adjustment plan was created ready for her return to start again in September 2017. She qualified for disabled student allowance which provided a laptop with some helpful mind mapping software, a voice recorder for recording lectures and a mentor one hour a week to help her plan her work.

she has always "felt different" has few friends and is very sensitive, when she came home on leave of absence a family friend, herself a psychologist suggested that Liz may have Aspergers, after much back and for we were eventually referred to our local adult autism service and her diagnosis was confirmed - in terms of her DSA allowance she will now be given the "Brain in Hand" app which may hopefully help her planning and time management.

Simce her diagnosis I have read as much as I can to help me understand so that I can help and support Liz effectively, ( I found the book Aspergirls by Rudy Simone particularly helpful) I am struggling at the moment to know how best to handle the day to day living issues that the university cannot help with - Liz has triggers that seem to stop her in her tracks and derail her progress for example, student accommodation is never wonderful but her housemates are nice girls and the closest friends she has had for a long time so she wants to live with them but Liz has (what I now understand to be) sensory issues, she doesn't like hair on bathroom floors and in plug holes, this can stop her physically showering for a couple of days until she can face cleaning it, which in turn leads to her not leaving her room, therefore missing lectures. She doesn't eat properly because the girls don't wash up well enough for her, and she can't stand the smell of rice (a student staple) she gains weight because she eats rubbish, ordering pizza to be delivered which from a budget point of view is not sustainable.

if she could do this degree at a uni near home she could live at home but this is not available to the (high) standard that she demands for herself, so she is 3 hours away which makes it difficult to be able to help with the day to day stuff.

It seems to me that living away from home has suddenly amplified her difficulties and I realise that when she was at home I was her safety net, and her PA so these difficulties were not as apparent. Her late diagnosis has meant that we haven't had time to understand what her triggers would be, and build up confidence and routines to deal with the adult stuff of living independently

Has anyone else had similar issues at university? Any advice gratefully received - thank you

  • I didn't know I had ASD when I was at uni but I found living with others excruciating. When I completed my PGCE I lived in a studio flat which was a lot better. The flat was in a student only building so there were others I could build friendships with but I had my own space that I had complete control over.

    Has your daughter applied for PIP? This could help to provide her with an extra income each month to help her tackle the things she's finding difficult at the moment. For example, she could use the money to subscribe to a healthy meals service if she is struggling with cooking or she could use the money to pay for a cleaner. It sounds like burdening the load for your daughter as much as possible would be sensible so that she can focus her energy on her studies.  From what I've read its typical of people with ASD to struggle as more and more demands are placed on their time. This is certainly the case with me. To cope with the sensory overload at work and the difficulties I experience with communication I only work 4 days and week and use my PIP payment to support me with this.

    If your daughter does receive PIP she may be entitled to extra benefits, such as housing benefit etc. Your local council may have a benefits officer who can help with this, alternatively, you could contact the Citizens Advice or any the benefits advisory service at your daughter's uni, if they have one. It sounds like your daughter would have a lot of evidence to accompany her application, such as the DSA award, her ASD report and copies of her leave of absence paper work etc

    Your daughter may also be entitled to an autism mentor through the DSA who could work with her in establishing a routine and developing coping strategies.

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