41 year old daughter on the spectrum and with learning difficulties had a fall while out alone and has lost her independence

Hello to all, I'm new to this forum and am very worried about our daughter so am hoping you can offer a bit of help or guidance which would be really appreciated.

Daughter used to be very confident and independently walk to the shops in our village, catch the bus into town, catch the bus to various activities and each weekend would very happily walk about 5 miles in the countryside with husband and I, up and down the hills close to our home. She was happy and confident and seemed very content with her life and we were all working towards her living independently with support.

Then the pandemic arrived. She really struggled during the pandemic and became anxious (as we all did) and couldn't understand why she had to stay home. After the pandemic she was still very anxious and worried about lots of different things - sadly most of her activities had to permanently close. A couple of winters ago she decided against our wishes to walk to the village shop in the snow - she was very determined! She eventually returned home in tears with the support of a kind neighbour - she had fallen in the snow and struggled to stand up. From this point on she has worried about leaving the house and will cling onto someone's arm just to get to the car - she still does this now even though she using a walking stick for support. She will walk to the shops with me/husband but clings onto one of us for dear life - if it's windy she won't leave the house - if it's raining she won't leave the house - she also visits the toilet about 4/5 times before leaving the house. She says she can't go anywhere on her own any more. If she gets worried while out she will sometimes try to sit down on the floor wherever she is - once she sat down in the middle of a busy road which was soo distressing for all involved.

I've taken her to our GP several times and she's had an eye test which showed perfect vision. She's had an assessment at a Neurodivergent clinic this January (it took over one year to get the appointment) and they promised that one of their psychologists would work with her weekly starting in March - we're still waiting and I've phoned several times but to no avail.

We've both attended a Keeping Calm course at a local private Health and Wellbeing Centre where we tried controlled breathing, Yoga, Tai chi, meditation, pilates,sound baths and we're both soon to have massages. We have duffusers around the house with lavender, we listen to calming music, drink camomile tea, have a Tibetan singing bowl which we use daily.

What else can we do? Our GP has advised against her using any kind of prescribed medication eg antidepressants,  as it could cause other problems too. She takes magnesium, omega 3, a night time herbal relaxing tablet.

We just want our happy confident daughter back - the one who loved to walk up and down the hills, get on the bus alone, visit her friends alone, and laugh every day. 

Sorry for the lengthy post and fingers crossed that someone can offer suggestions. Thank you in advance .

A very worried and weary parent.

  • Thank you so much, I'll have a look at all of the links you've suggested.

  • Hi there 2Wellyboots, welcome to the online community.  I am so sorry to hear of the difficulties your family, especially your daughter, are experiencing.  It can be really difficult to experience something that makes you feel unsafe out in the world, but it's wonderful that your daughter has such a supportive parent willing to do so much to help her try to regain her confidence.

    I'm sure our community will have some tips and advice for you, but in the meantime you may also like to have a look over some of the NAS guidance pages, in case they are of any help to you.

    Anxiety 

    OCD - you didn't mention OCD specifically, but it might help with some of your daughter's behaviours when she is distressed.

    PTSD - same as above.

    You mentioned that you've tried therapies and wellbeing activities together - which is wonderful - so I'd like to point you in the direction of our Autism Services Directory as well, where you can search for professionals and services available in your local area who have adapted their services for or are specifically tailored to autistic individuals.

    And please remember to take care of yourself as well.  You are a brilliantly supportive parent, but it can be hard and tiring to support an autistic family member.  You might find our Parent to Parent service valuable for your own wellbeing.
    The Parent to Parent Emotional Support Service provides emotional support to parents and carers regarding their autistic children/grown-up children. The service is provided by trained volunteers with personal experience as the parent of an autistic child or adult. Our focus is on emotional support and understanding what it is like for you as a parent. We offer empathy, understanding, and a safe space to talk through your feelings and experiences. To request a call, complete a web enquiry form here: https://www.autism.org.uk/advice-and-guidance/help-and-support/parent-to-parent-helpline

    Thank you so much for reaching out to the community, and best wishes to your family going forward.  Please feel free to get back in touch if you need any more help and support, or to let us know how things are going - the online community is always here for you.