Supporting elderly people with autism or Aspergers

[ASDResearch]

There's very little written about caring for elderly people with autism spectrum disorders. Perhaps because it is only in recent years that people have been formally diagnosed. However, autism is nothing new and there are many elderly people who are living with this condition.

I'm researching what is best practice in looking after elderly people (eg over 75 years old) who are somewhere on the autistic spectrum. This is particularly important as very elderly people can begin to lose some of their communication skills or memory, so cannot always tell you what they need.

Can you point me to any protocols on best practice care for elderly ASD people? Best practice guidelines would help carers, advocates and family members to plan better care that reflects the needs of the elderly person.

Elder care can move forwards into paliative care. Again, special guidelines seem to be needed here.

Many thanks!

[nssa]

I am a 38 year old with Aspergers. My late grandfather was never diagnosed but I really do think he has the same kind of neurological makeup as me. He displayed all the classic signs. In old age he was very vulnerable. I was his "secretary" as he called me. He found anything such as filling in forms and dealing with officials very difficult so I took on the role for him. When he was seriously ill he did not recognise that he was so unwell and did not call the doctor until he was an emergency case. He also limped around with a broken hip for two weeks before going to the doctor. He did not recognise his own needs very well partly because he had a very high pain threshold. Other family members did not really understand him and misunderstood him and his feelings. He was quite isolated and alone a lot of the time. He was an extremely loving person but he did not show this in the way other family members expected so relationships were sometimes strained. He did not have the support from family he should have had. I think family members should be educated as the the communication challenges faced by people on the spectrum. In his final days in hospital he was unable to seek the support he needed from the nurses in the hospital. I believe they felt he was depressed but a bit part of it was simply his difficulty in being in a different environment and also stress induced by being on a noisy ward( he had an oversensitivity to sound).I think Autistic people need to be in a private room due to sensory issues and also the problems associated with having to be sociable on a ward, this leads to anxiety and is exhausting. Nursing staff should carefully ask them about specific things rather than a general "how are you." My grandfather also fell prey to a couple of unscrupulous characters in his time and I was careful to make sure I knew who had been visiting so I could deal with this. He had always been very trusting and unable to recognise devious and manipulative behaviour in others. He was the most honest and kindest person and I have ever known and had lived an extremely difficult life. He had fought in the 2nd world war and was still struggling the the emotional impact of this, as well as his father leaving when he was young and subsequently being placed in an orphanage. I think elderly people on the spectrum may also need support with some of the emotional turmoil they have experienced, through events and also through having lived a lifetime being misunderstood. The latter part of his life was not as dignified and serene as I would have hoped for someone as wonderful as he was. I hope this helps.

[godmother2001]

lam going to a meeting of specialists and will bring this up then caring for aspie and autism spectrum elderly l am an aspie self diagnosed it would cost $600 plus for the Drs report... l am also an aged care sister in Melb Vic Australia