 No one to contact when autistic person's parent dies
Barbara MacArthur (27 May 2003 17:00)
Now I am 77 I worry who my son can contact when I die. The local neighbours are young students who come and go. We have no relatives or friends. I have contacted all the usual agencies, government (social Services etc.) and voluntary, but there appears no one who can or will offer to be a contact in such an emergency. My son will have his home so he will not need accommodation. However, he would be unable to make the usual arrangements such as cremation etc. He is unable to care for himself. He goes to pieces when his routine is interrupted. Those in authority seem to be frightened and shy away from the problem. There must be many, many families in the same situation. When my son was a child there was not only no help available, but also positive hindrance as we were looked down upon as an uncontrollable, naughty child and an inadequate mother. Now he is an adult there is help for autistic children, but seems to be none for the adults.
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Bereavement
Brenda Misselbrook (28 Aug 2003 18:42)
Dear Barbara,
Your son will need support to maintain his structures as you rightly say. As an adult with asd, I would say that he should be planned for by adult services disability team (social services).
They have a duty to make plans for your son for support etc, if you do not get any answers, make a complaint through the local authority and to the head of social servoices and copy it to the leader of the council. If you live in Wales also write to the Welsh Assembly. GOOD LUCK
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No one to contact
sheena (30 Sep 2003 22:26)
You should insist that social services write up an advance care plan, to not only help him in such an event but also to provide for him in the future.
You will of course have a will, how about talking to a solicitor about setting up an overseer of his affairs.
My daughter is only 10 but we have a care plan written up with currents needs and one written up incase something happens to us both in the future.
SS weren't too please about having to write up both, but after our insistance they had no choice.
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Autistic Adults
Kirsteen Clark (15 Oct 2003 19:31)
Dear Barbara,
I am also a parent of an adult autistic son who is now 25years old. My son is looked after by myself and carers within his own home, next door to my own. But we live on an estate and there is little understanding let alone tolerance of his condition. We are desparate to get him into an isolated setting so that we are not permanently on edge lest he upset a member of the public!
Do feel free to either e-mail me or phone on 01981-590405. I live in Hereford which is near the Welsh borders.
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gandalf (31 Oct 2004 21:13)
there is no local authority support for adult autistics in wales, unless violent in which case social services will apparently help
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No support when parent of autistic person diesdies
Barbara MacArthur (26 Oct 2005 15:51)
I have made more enquiries only to confirm how right you are.
Barbara
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Enquiry
Judaline (1 Sep 2005 17:35)
Dear Barbara,
I am from Malaysia, and we have had families in the church with similar problems, and what we did was to encourage people to think about/pray about 'fostering' or 'adopting' one of these special needs people. Obviously, this requires a great commitment, and we decided to have at least 2-3 foster brothers/sisters for one special needs person, for the same reason (that when the parent dies, they have someone who loves/cares for them).
Just for curiosity sake, whereabouts do you live?
Regards,
Judaline Lau
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When parent of autistic person dies
Barbara (26 Oct 2005 15:57)
Thank you Judaline.
There is no such scheme here. Circumstances are different and it would not work here.
I am seeing an experienced (but expensive) solicitor to look into a Trust scheme for my son as he will be so vulnerable on his own.
We come from Cardiff, capital of Wales, UK.
Barbara
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Finding an appropriate home for a violent autistic
cherry gilmartin (30 Oct 2005 11:34)
My son has become more and more unstable during the past two years. He is 30 years old and we are trying to find an appropriate home for him while we are still alive. Our lives, at the moment are a nightmare of rollercoaster days, not knowing how he will react to any given situation. He has persistent compulsions like using a toilet roll up in one go, emptying a litre bottle of shampoo onto his head if I forget to put a little in a small bottle, squeezing soap until it is broken up and generally shouting to get his own way. Life for Carers of any handicapped child is not easy but with autism it is horrendous. Social Services are restricted by government legislation and lack of funding. I was told that we had three options if our son attacked us again. 1 we were to call 999 and get the police to arrest him and put him in a cell. 2. We declare him homeless and Social Services would put him into a hostel. 3 we have the Consultant Psychiatrist declare that he needs to go into an Assessment Centre with all the other Psychotic people for two weeks. We both felt that in a civilised society neither of these options was appropriate for a handicapped person and we are struggling on to find a home. It's a disgrace in this country the way we are all treated and someone should fight for us and we are all too worn down by our predicament.
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Finding an appropriate home
Barbara MacArthur (31 Oct 2005 15:42)
Reading your message almost reduced me to tears. I know how physically and mentally exhausting your situation must be. My son is 51 now and I am 79. He used to be so hyper-active. Once I picked him up out of danger and he head-butted me. He cracked 2 of my front teeth. Another time he wanted to get my attention when I was sleeping and hit me in the eye with a Corgi bus. I had such a shiner and a swollen red nose for days and days. However, I was lucky in that he grew out of that stage. He became a much more calm, thoughtful, affectionate person. I do hope that you have some such luck - it seems that it is long overdue.
Barbara
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social support
Kirsty (7 Mar 2006 23:56)
Hi Barbara,
I have just stumbled across this site and don't know if you are still accessing it.
I manage supported living services for adults with learning disabilities and asds so i have quite a lot of knowledge about support, benefits etc. There are several ways your son may be able to access support but I am unable to comment as I don't know your circumstances.
If you woud like to e-mail me please feel free to do so.
kirsty398@hotmail.com
Yours,
Kirsty
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Help me donate to the National Foundation for Autism Research
James (28 Dec 2007 16:57)
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