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'm an autistic adult but happen to also have been a social worker for adult social care until recently. Your sibling can contact your local authority for a care act assessment. This legislation covers the eligibility for support from social care services via the local authority. A lot of LAs are now setting up autism teams because the demand is increasing and quite often autistic people don't fit within traditional learning disability or generic adults teams - they need support from people with good awareness of autistic needs.
If there is no autism team yet then depending on whether they have a diagnosed learning disability they will be put on the waiting list for the most appropriate team to wait for a social worker to be allocated. Then with their help they'll support you all to create a support plan including contingency planning.
Just to add, the waiting lists can be very long and there tends to be a lack of consistency in experience of LA services as they can vary greatly across areas and even social worker as we don't always work in the same way as each other. If you end up with a generic social worker, please don't be put off if they don't know a great deal about autism. You as a family are the experts of your loved ones autism and the social worker can look at those needs and support with finding the right services for you. I certainly didn't know lots about autism when I started, or even now when I'm recently diagnosed myself, but most of us will work tirelessly to try to understand and support you all.
Hi Hoookaduckduck, thank you for your response and thank you nas72623 for asking this question. Although my child is still young, I do worry about the future. My child has not been assessed by social services. I never asked for it. He is very high functioning, quite intelligent, but cannot go out on his own, doesn't do chores and has mobility and sensory issues and does suffer anxiety. Does the child need to meet a certain threshold in order for social services to carry out an assessment?
No, you only need to appear to be in need of services (usually determined by health conditions diagnosed). Some LAs do some initial screening at their contact centre which is based on the Care Act criteria (basically your daily routine broken down into "outcomes" like nutrition, personal care, social needs, access to community, work and learning support (there are more). It needs to be clear when going through these needs that you are concerned about contingency arrangements as a carer should anything happen to you, so although needs may be currently fully met by you there would be issues without someone else in place to take over should you become ill or die. They should also offer you a carers assessment to identify if you have any needs to be met to sustain your informal caring role.
This applies to adult social care. I'm less familiar with children's services.