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My daughter won’t let us see her at all

NAS71186

Hi there, my daughter was diagnosed with autism and sensory processing disorder 3 years ago, it all got a lot worse once she started puberty, I always knew she had autism but I found it incredibly difficult to get a diagnosis. Since my daughters body changed she started to hide, it’s been over a year now since I actually seen her, she’s almost 14 now and hides completely under a thick blanket and won’t let anyone into her room unless she’s completely covered, things got really bad 3 years ago so she’s never been able to attend high school. I’m just wondering if anyone else has experienced this and if anyone has any advice, I’ve mentioned to her health care team that I do suspect some kind of body dysmorphia but then again, getting answers these days isn’t easy. Advice, tips and any similar stories would be much appreciated. 

Thanks Slight smile

  • Hello

    I wish that I had some concrete advice and experience to offer you in your difficult situation.  My first thoughts are about books. Would your daughter read anything? I bought my recently diagnosed 17 year-old daughter, Siena Castellon's "The Spectrum Girl's Survival Guide. How to grow up Awesome and Autistic". My daughter was already past most of the useful information and personal history regarding puberty but it could be very relatable for your daughter. Her website contains good information too. Your daughter may like receiving information from another teenager/young woman who has autism as opposed to an adult, her mother, ASD specialist or health professional.

    https://www.qlmentoring.com/

    There is also The Girl with the Curly Hair Project, whose books are super relatable too. The website has lots of resources, training sessions, webinars etc but I have only read her blog and books so far. This is a social enterprise set up by another young woman with ASD, Alis Rowe. She has written a book specifically abut puberty. Again super relatable for a young person, and me too! I am learning a lot about what it is to be my daughter through her first book.

    https://thegirlwiththecurlyhair.co.uk/

    https://thegirlwiththecurlyhair.co.uk/product/aspergers-syndrome-and-puberty/

    I don't know if this is a stupid idea but would she wear a massive hoodie, that she could hide in? It might be a first step to getting the blanket off her and getting her to wear something that is midway between a blanket and clothes in front of you. Someone on this forum wrote about a company called kudd.ly. Their hoodie blankets are very expensive and I have not bought from them myself so I can't recommend them personally like I can the books. I am sure that you could find something similar elsewhere but they sure are big.

    Good luck and please make sure that you are looking after yourself too so that you can in turn look after your daughter.

    F

  • That must be so painful for you. It did make me think of the book I'm reading, The Protective Shell in Children and Adults. Not an easy read full of psychoanaltical concepts and I doubt of practical help, but might bring some sollace or sensemakingfor you. It also made me think of Dibs, In Search of Self. I definitely had a lot of body angst, I was in my late thirties before i could take my tshirt off at the beach, and still it's hard. ASs can have a difficult relationship to their body but I've read it's different psychologically from classic dysmorphia. A lot of eating disorders are ASs, we're over represented. Gosh, what a worry for you.