Published on 12, July, 2020
My sister lives at home with my Dad, she has never been officially diagnosed due to a reluctance on my parents' side to diagnose her when she was a child. She has many issues including anorexia which she was hospitalised for shortly after our Mother died over 10 years ago. As a result, she will not engage in any therapy, suggestions of help etc. She is bright, full of ideas and could do so much but she is angry, aggressive, compulsive and frustrated. I'm trying to work out how to get her diagnosed, into a 3 month residential programme and possibly a new way of living. I suppose what I'm asking is, is how would you suggest approaching the subject with her? Any advice, opinions or suggestions are welcome. Thank you.
Thanks Dave.
Hi Pixiefox, I completely agree with you re safety and familiarity and I don't know for sure if this programme is right for her. It's more independent living in a community rather than being in an institution for 3 months which is the reason I like the look of it. She lives at home, doesn't work and has no real interaction with the outside world so something needs to change. I'll have a look at the documentary which sounds like a great way to start a conversation. Getting a diagnosis and an open conversation started are the holy grail. Thank you for your help and perspective.
AQ50 https://psychology-tools.com/test/autism-spectrum-quotient
or a short version
AQ10 https://www.nice.org.uk/guidance/cg142/resources/autism-spectrum-quotient-aq10-test-pdf-186582493
I'm a female with AS. I am able to live independently, but even if I wasn't I would hate the idea of being put into a residential programme. Autistic people need to feel safe and familiarity is comforting. Being sent somewhere with a load of strangers may not help. However I am not an expert or healthcare professional and I do not know your sister, so this is just my point of view. But I wonder why you think she needs a residential programme? Why can she not be supported in her own home?
It can be difficult to approach the subject of autism. I saw a documentary that featured an autistic woman who I identified with, then went online and took the AQ50 diagnostic screening test (Google it - it was designed by one of the leaders in autism research, Professor Baron-Cohen at Oxford University) perhaps you could start a conversation about an article you've read about Autism and relate some of her behaviours to it, or both do the AQ50 test together as a quiz just for curiosity? If she scores highly (32 or more) that would be a starting point to approach her GP, and you could offer to go with her if she wants, but you should not try to force her her.
You don't say if she works or not. Another way of encouraging her to get a diagnosis might be to point out that she would be able to get support in a job, or other financial benefits if she cannot work, giving her a bit more independence. There are also support groups where she could meet other autistic people and make friends. But I believe she will need a formal diagnosis first, certainly for benefits anyway. See the relevant advice pages for adults in this website for information.
Hope this is helpful
Hi Dave, thank you so much for your advice and reply. Luckily, there is a residential programme near us who would be willing to take her but we need a diagnosis and referral. Self diagnosis is something I hadn't thought of as a starting point and I think it would appeal to her, is there any particular test you'd recommend?
You will need to get her interested in the idea and seeing some benefit for herself and the family and wanting to go into this. Also to know the details of what is available in your area/ country.
A 3 month residential programme will need to exist (I don't think it does easily in UK), so you will need to research that out and availability/ cost.
Self testing online may be a starting point if she is willing