Hi all I need some help. My dd is 21 with moderate autism and other diagnosis . I was told she would never take exams or leave home. She took exams passed some with a* * art, music,* so more creative the rest low passes . She has just moved home after three years with her ex partner. But although she lived alone she still needed me at phone anyway I’m waffling
She has been home three months her relationship broke down and was obviously very hurt . But now I’m really struggling to motivate her . She isn’t getting dressed , she doesn’t help round the house . She has never really worked but did college rather than nothing . I’m trying to motivate her to look at jobs but she says she has no desire for one I suggest interest courses again she says no . I have worked with autism for twenty years am a qualified sen teaching assistant and have no clue what to do . I know your all thinking depression but it’s not that she takes meds for that I make sure she does or she really doesn’t cope. But she is laughing and happy on her computer to " friends" trouble is she lives on it I have woke up and she is just coming off .
I’m so scared she is not going to be all she can be and even more scared she doesn’t seem to want to be more . Her bedroom is a mess ,her computer room is a mess ,it’s like she doesn’t see her surroundings . I don’t know whether to place demands on her I.e we need to do job searches/ college .I have been suffering really bad panic attacks and although capable she won’t even go shop for me as she is immersed in her computer . I know this is her new obsession and I know she is struggling with the relationship breakdown but I’m not sure how long I let her stew in it before I say this isn’t healthy . I don’t want to break her by placing demands but I feel negligent and a bad mother for letting her live this way . I was going back to work full time but not now instead I’m now working for myself from home so I can be here as god knows what mess I’d come home to as she hasn’t got the ability to envisage what needs doing without instruction. I’m not sure if this is autism and the inability to think ahead regarding own future or laziness . I am sure she has suffered a huge blow and I have sat all days and nights going over and over it but how long is it healthy to allow for the hurt . I know her difficulties and inability to think how cleanliness look played a part in the relationship breakdown . Her anxiety is really bad but it seems like the anxiety is only bad for work and education . It’s hard to get she can get on stage and sing and go out with friends . Has anybody had this ? I tried speaking last week and I got was " I couldn’t give a f&&k about a job or college it doesn’t bother me" . I’m scared , I’m lost , and maybe in a way the doctors were right in the she won’t live alone in that she doesn’t see the importance of cleanliness or work and education and will always need support . All I know is I haven’t felt this lost since diagnosis 16 years ago . Any help appreciated .
Hi Margot,
It sounds like she has reverted back to being a teenager living at home.
I would ignore the professionals - they often have such low expectations. It might be that she will always need prompting with household and hygiene tasks - but that person doesn’t need to be you. It could be a paid support worker visiting her in her supported living flat etc Needing prompts is not unusual in those on the spectrum.
Is she claiming benefits and is she contributing financially to the household? She needs to be.
At the moment she has everything she needs - a warm bed, meals and access to the internet; so she has no need to make changes.
Whilst indulging her obsession with the internet is no doubt helping her cope with the break up, she does need to start getting on with life.
Start with one thing - e.g her own laundry or accidentally forget to buy her favourite breakfast cereal etc - prompt her to do her washing or buy her cereal etc - if she does it great; if she doesn’t- then she has a naturally occurring consequence (these are just examples.) Ideally you are working towards establishing new routines eg laundry on Wednesday or whatever.
Alongside this, start researching local supported living options etc and refer her to social services.
Melly1
Hi thank you so much for your reply . You are absolutely right . I have been a support worker for yp with autism I’m own homes so as a professional I know this is how you continue , I think I am so close to the fire I couldn’t see the flames . I absolutely agree their seems to be a regression and I’m allowing it . Yes I will start with some small changes . I had forgot some things such as I asked her to empty the litter tray Into a bin bag which she did but didn’t think to refill with clean litter as I hadn’t fully instructed . Yes she does get benefits and no she isn’t which I am going to address . I really appreciate the advice I think I had kinda forgot the behaviours , thought patterns while living away from home so now I’m back to almost learning the process again . Thank you x
Hi Margot,
It’s not so easy when you are emotionally involved and totally immersed in the situation.
(Our situations are similar, as I care for S who has autism and am also an SEN teacher and have taught children with autism for many years.)
Writing out a plan/ your strategies/ lists might help.
Melly1
Hi Margot and welcome to the forum.
My son (age 28) has similarities to your daughter. He has never been able to hold down any job for more than 3 or 4 days. He is very untidy - his room is always in a mess and he spends hours gaming.
When he was in his teens he was diagnosed as having mild Aspergers. He has social anxiety especially when it comes to things like job interviews or appointments etc.
However, my son does help to care for his elderly gran who lives locally and he often stays with her ( which is a great help for me! ) I’m pleased to say they get on very well). My son got good GCSE results and went to college so he certainly is intelligent enough to work but just hasn’t got the confidence.
I used to tidy and clean his bedroom for him but I soon realised that this was not the answer. Now when his room needs cleaning we tidy it together. For example I’ll empty the over flowing bin and vacuum the floor while he picks up the clutter from the floor. Sometimes he wont want to clean his room so I accept that and leave it for another day.
I read an article once about young adults too anxious to work and the advice given was to encourage them to have a good social life to enhance their social skills. This makes sense and this is what I’m trying to do for my son (now that the covid restrictions are being lifted).
It’s great that your daughter loves going out with friends and enjoys karaoke - again that’s something my son loves too!
Perhaps your daughter needs a bit more time to come to terms with the relationship breakdown and moving back home. What about her friends - are they working?
Dear Margot_2107
I am sure that fellow carers on this forum will be able to help you come to decisions about your daughter. Im sure they will be able to help you. I think one of the fellow carers suggested you phone up Social Services and get your daughter referred over for supported accommodation that might be a good idea for you to think about. I think it would help your daughter think about some kind of future for herself if she was in supported accommodation and had some responsibility like learning to pay her bills. I think that would be a very good idea for you.
What i would like to say is Welcome to the Forum! You are not alone in your caring role as I am sure that many on here will understand exactly how you feel and will offer you support like they have already done. Caring can be very lonely and the pandemic has made caring responsibilities challenging as many carers have been socially restricted and unable to attend social groups etc if you have done this before the pandemic.
Carers UK are running online weekly meet ups for carers and you can find the information on how to register at Care For A Cuppa-https://www.carersuk.or/help-and-advice/get-support/onlined-meetups. Then there is another one called Share and Learn-Share and Learn | Carers UK.
Our telephone number is 0808 808 7777 which is open from Monday to Friday 9am-6pm. and the email address is (advice@carersuk.org).
They provide information and guidance to unpaid carers. This covers:-
-Benefits And Financial Support
-Your Rights As A Carer In The Workplace
-Carers Assessments And How To Get Support In Your Caring Role
-Services Available To Carers And The People You Care For
-How To Complain Effectively And Challenge Decisions
Best Wishes
Kristie