Parent of undiagnosed young adult

My 28 year old daughter is undiagnosed but we think autistic and other family members who have experience of working in this area think the same about her. She does have a job but  she works from home part time she has had about ten years of struggle - anorexia, dropping out of uni, going back to uni, trying to live in two independent flat shares and then being asked to leave or it not working out. She is socially isolated and is often dropped by anyone she meets, she cannot sustain relationships easily.

She does not speak to us and spends hours in her room and is a bit of a hoarder, her room is covered in stuff, can't see the floor. Things are getting worse as she gets older as she has very few friends and the ones she thinks of as her friends are drifting away doing normal stuff, travelling and getting married soon having children.

I did years ago mention autism to a psych she was seeing because of depression and anorexia and they dismissed this and told my daughter what I had suggested and she was very angry.

i am so sad and feel every day is such a strain living with someone who says almost nothing to me. I have thought of leaving so she can have my house and I go somewhere else. She has a strict routine of washing, eating and now its all meditation and yoga on her own. She does very little domestic work and hates any suggestion that she should do more. It took two years to get her to pay something to me regularly for bills and food - she was furious, angry and did not see why she should pay anything.

I do know of one or two people who are in the same position but they are not friends of mine but I would like to speak to others who have this existence, managing with an adult child who is not likely to live independently and who does not speak (she is verbal and does speak to others just almost never me and her father or younger brother - a lodger would say more to us).

I feel as if no one is in my position and as she has not had a diagnosis  I cannot get any support. I worry about my own life and health. I have looked into the diagnosis tests and for years I have been convinced she is autistic and the anorexia and depression happens when she cannot manage life, they are her sort of melt downs and her treatment for anorexia provides a routine of eating and meal plans which she feels secure with as she likes routine.

Its very sad to watch her life getting smaller and smaller and mine as well.  I do want to go somewhere and just have a good cry about this and also maybe get some help in what to do to help her and us.

thanks

Parents
  • Have you heard of Livia Sara? I was listening to her earlier today. She was sectioned several times for an eating disorder when actually she is autistic. Here's her website: https://www.livlabelfree.com/

    I'm wondering if she may have some useful advice for you. I was listening to her on Squarepeg podcast here: https://squarepeg.community/105-bonus-eating-disorder-recovery-autistic-self-discovery-and-releasing-ourselves-from-labels-that-limit-us/ I am autistic and so is my son. My son has been resistant to accepting his diagnosis and unwilling to learn about autism at times. One thing I've found helpful is just having podcasts on autism on in the house as I'm doing chores or work. Sometimes he wonders in to the kitchen as I'm listening, or whatever room I'm in and he can't help but hear snippets. Later on he may ask me questions about what he overheard. Another good podcast is 1800 Seconds on Autism in BBC Sounds. 

    It's very difficult to help someone in your daughter's position and you must feel very scared and exhausted. You cannot continue to sacrifice yourself this way. It's unsustainable. If your daughter is autistic then the usual treatment plans for disordered eating won't work for her, so I think your hunch is right and the psych was unethical to treat your concerns that way. Her behaviour sounds rigid in it's routines, which is certainly indicative of autism. 

    When services fail our children it's easy to believe that we are doing what any parent would do, but what you've described is beyond parenting and is actually care work. An option that may be for you is to ask for a carers assessment. Even if your daughter won't acknowledge or accept what is going on you do have the right to get appropriate support for yourself. https://www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-assessments/

    Its very sad to watch her life getting smaller and smaller and mine as well.

    I know this feeling well. Do go somewhere, do cry. Take that time for yourself. I'm wondering if there is a support group for parents near you, so that you can connect with people that understand your challenges. Keep coming here too if you want. And don't give up your house! It's yours! And it's your life too!! You are more than just a parent and carer. 

Reply
  • Have you heard of Livia Sara? I was listening to her earlier today. She was sectioned several times for an eating disorder when actually she is autistic. Here's her website: https://www.livlabelfree.com/

    I'm wondering if she may have some useful advice for you. I was listening to her on Squarepeg podcast here: https://squarepeg.community/105-bonus-eating-disorder-recovery-autistic-self-discovery-and-releasing-ourselves-from-labels-that-limit-us/ I am autistic and so is my son. My son has been resistant to accepting his diagnosis and unwilling to learn about autism at times. One thing I've found helpful is just having podcasts on autism on in the house as I'm doing chores or work. Sometimes he wonders in to the kitchen as I'm listening, or whatever room I'm in and he can't help but hear snippets. Later on he may ask me questions about what he overheard. Another good podcast is 1800 Seconds on Autism in BBC Sounds. 

    It's very difficult to help someone in your daughter's position and you must feel very scared and exhausted. You cannot continue to sacrifice yourself this way. It's unsustainable. If your daughter is autistic then the usual treatment plans for disordered eating won't work for her, so I think your hunch is right and the psych was unethical to treat your concerns that way. Her behaviour sounds rigid in it's routines, which is certainly indicative of autism. 

    When services fail our children it's easy to believe that we are doing what any parent would do, but what you've described is beyond parenting and is actually care work. An option that may be for you is to ask for a carers assessment. Even if your daughter won't acknowledge or accept what is going on you do have the right to get appropriate support for yourself. https://www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-assessments/

    Its very sad to watch her life getting smaller and smaller and mine as well.

    I know this feeling well. Do go somewhere, do cry. Take that time for yourself. I'm wondering if there is a support group for parents near you, so that you can connect with people that understand your challenges. Keep coming here too if you want. And don't give up your house! It's yours! And it's your life too!! You are more than just a parent and carer. 

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