I’m mum to a 20 yr old female who was diagnosed with Aspergers when she was 8. Life has always been challenging, yet as a family we’ve managed to cope-until now! I’m sure the covid situation is a contributing factor but many of the issues were there before but I put on a brave face & muddled on through, yet the reality is now I really cannot cope, but don’t know where to turn. Many issues appear to be pretty standard it would seem-she rarely leaves her room, games all day, resists showering, doesn’t tidy up after herself, over eats, refuses to help with small tasks around the house generally treating the place like a hotel. She can be sociable & chatty towards us one minute then angry & aggressive the next, wanting everything on her terms. She knows the basic house rules but is non compliant and basically does whatever she wants! She was supported throughout her school years with a statement/EHCP & scraped through her A levels and secured herself a place at our local university where her effort is minimal, often needing to re submit work that falls below the required pass mark. She had been in receipt of P.I.P, that followed on from her childhood award of DLA but that was recently ‘taken away’ from her on the basis that she attends university & therefore can manage the rest of her life! I have of course appealed the decision as this is not so! On a personal level I feel like I’m drowning!! All the support we had in place 2 years ago has been removed bit by bit and I may appear selfish when I say that I really cannot face the prospect of this situation carrying on indefinitely. Her last EHCP stated that she would ‘require substantial support to be able to live independently’ and yet there appears to be little out there that can help me, as I am that substantial support-the unsupported, unpaid carer! I’m by no means a bad mother, I have supported her & fought for her rights throughout her school years but I’ve reached the point now where I feel I could just turn her out on the street. Even though I feel this way, the prospect of doing so actually makes me cry......
You may find it useful to have a look at our Community Care page on our website. The page contains information about community care services, at home or in the community, that may be available to you:http://www.autism.org.uk/about/benefits-care/community-care.aspx
You may also like to contact our Parent to Parent service who offers emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism .
You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form: https://www.autism.org.uk/services/helplines/parent-to-parent/enquiry.aspx
You may want to search for services in your area that cater for people with an autism spectrum disorder on our Autism Services Directory: www.autism.org.uk/directory.aspx
All the best,