Published on 12, July, 2020
Hello everyone,
One of my siblings is in their early 72s and is sole parent for their autistic child now in their early 20s. The young adult (K) was diagnosed as autistic when they were 11 and was in and out of various schools. They have no qualifications. My sibling (M) has tried hard to get K into voluntary work but it has never worked. Although K is high-functioning, they have major issues (sensory etc) which means they find it extremely hard to get on with anyone. They have always lived at home and M looks after them. However, what's going to happen in the future?? Is residential care an option?? How would they cope in a shared house?? Has any other parent or carer been in this situation? I apologise for vagueness but I don't want to give anything away about their identity. They live in Cambridge.
Or does anyone know a forum like this for parents and carers of young autistic adults who are high functioning but unable to live independently?
Thanks in advance for any help anyone can offer.
Mary
I started searching the Internet for forums tonight for the first time as me and my wife are very lost now with supporting our nearly 15 year old daughter. Your message caught my eye because we too are very concerned about her future independent of us. She is desperate to move out at the first chance but as it stands her sensory issues would probably prevent her coping in a kitchen or shared accommodation. We are younger parents, both early forties so not facing the same problem as yourself. We have followed our instincts mostly with no support but recently in the last two years our relationship with our daughter is becoming more and more strained as our seemingly good intentions to help her in life seem mostly to make things worse. Really I'm just looking for thoughts and ideas for general support from other parents. Sorry I have nothing useful to comment about your original post but its drawn me to reach out for help too.
I've finally got back here and it looks like the helpline has been closed unfortunately. I have contacted the Cambridge NAS branch and hope they will have some ideas.
Form what Michelle says, it looks like the key is asking social services to look at contingency plans. My niece already has had an assessment which basically says what she needs but everything is currently being provided by my sister. There's nothing in it about alternative provision, so I guess tht is what I'm going to have to look for.
Thanks for everyone's contribution.
Good luck Mary and don't back down. It is really important to have a contingency plan in place that is realistically going to be available, so the LA really do need to contribute to it so you know what is possible and what may not be funded.
You may have a wait for it unfortunately because LA'S allocate to social workers based on urgency and unfortunately there is so much demand just for crisis support that forward planning often gets stuck on the back burner until the case becomes a crisis situation itself.