JeanneA

Has anyone got the same problem with their autistic young adult as I have? My son who is 27 has been in independent living for 4 years, has 2:1 24 hour care. The problem is there has been a high turn over of staff during the past 18 months. I went to visit again after the covid lockdown, while the first visit went well with 2 new carers there, the next 2 visits went really badly, he became extremely agitated, hit out at staff and me and the property, staff managed to get him to his room but this behaviour continued until he starts to calm down but not for long, I’m told to leave as they don’t want the behaviour to escalate further. In the past the visits have been varied but these recent ones have been far the worst overall in the 4 years. I really don’t know what to do, any help would be grateful. Thanks

Hi Nikki, sorry to hear of what you are going through. My son Glen sounds very much like yours, he is 23 now, but he went to a residential school when he was 17, we were recommended this placement via Glen's clinical psychologist and social worker. We agreed with the placement after having a visit from the manager and director of the placement, we were very pleased with what they had to offer so haven't been in your position. However, you do need a good social worker, sounds like your's isn't doing the best of jobs by keep cancelling appointments, why don't you complain to the manager of your social services, demand to speak to him/her. Also has your son got a clinical psychologist/educational psychologist, as these are the professionals that can be very helpful. I really do feel for you and hope you get the school that you want. Do you know if this school has places available/have you visited the school? Please keep in touch, private message me any time. x

Really good news :-}

Hi Paula I really feel for you, it's all laying on your shoulders. I think you have done extremely well, 23 years, I lasted just 17 years and sadly had to place my son into a care home. Although that didn't work, he is now going into supported living in about 10 days time I really hope this will work out. I think you are doing the right thing in getting him in supported living. Do let us know how it all works out. I hope your son has come home now by the way.

Hi Paula, just want to say how much I feel for you, why is it disabled people get penalised for being disabled, well that's how I look at it. You shouldn't have to show your son's bank account, pay slip details for a 1 hour a week job that he is, I think it's absolutely ridiculous. The system is so unfair and so stressful for disabled people and their families. I hope all works out for you both in the end as I'm sure it will (( ))

Hi Paula, I hope all works out and your son is awarded the PIP benefit. Was he receiving the mobility part of DLA as well? My son Glen, has been awarded the higher rate of care and mobility for PIP he only got the higher rate of mobility because he is registered blind now. Let us know how you get on.

Thanks very much, most helpful.

Hi, my son Glen has been awarded the enhanced rate for living and mobility recently. He is moving into supported living where he will be looked after by 2 carers 24 hours a day. He needs transport so with being awarded the enhanced rate for mobility is entitled to a mobility car. I just wondered what the procedure is, has anyone else been through this, how long does it take to get a car? I have heard that 2 people car go on the insurance to drive the car which means it will have to be the carers and not myself. I presume I can still order a car though as I do have deputyship now for Glen's welfare and finance. I would appreciate any advice thanks.

Thank you very much, I appreciate your help!

Hi, yes I know you are unable to get the money until you have left hospital, at least doing it now I can then let them know when Glen leaves hospital and moves into the bungalow so that they can then start paying the benefit. On the form the declaration, I will be signing it as I am doing this on behalf of my son Glen. Do I print my name or his?

6 months is a long time but I thought it would take a long time. Glen is still in a mental health hospital so they will help regarding the forms, they will write reports etc. Glen is hopefully moving into a specialist supported living accommodation next year and will need a mobility car, so I'm hoping he will be awarded the enhanced rate for daily living and mobility.

Thanks very much for the info. I have had the phone call and I am now awaiting the form to come.

Hi, my son has had a change in circumstances, he is on DLA, higher rate for care and lower rate for mobility, I have been told by my son's social worker to ask for the mobility part to be looked at again as he will be moving into independent living in the near future and needs the higher rate for mobility to enable him to have a mobility car. I have been told that he will now have to be assessed for PIP. I am awaiting a letter form PIP after contacting DLA. I was told it will take up to 10 days to receive a letter which will then tell me to ring PIP, so how long will all this process take? My son is now blind in one eye and has very little sight in the other which the ophthalmologist from Moorfields Eye Hospital has said his sight in this eye will gradually deteriorate, he can only see light and shapes now, and needs guidance from staff to get around in the hospital he's currently in which is why the social worker thinks he will qualify for the enhanced rate for mobility.

Hi fade, I just wanted to say you sound so much like my eldest son who is 31 and has not been diagnosed for ASD or Aspergers, but I do feel he is on the spectrum, but I haven't brought this up with him. He has problems interacting with people, he hasn't any friends, and all his says at work is 'Good morning' and 'Good night' that's it. I agree with Trekster, an Asperger group sounds ideal. I hope you contact the one that he mentioned. I think you are doing well, it will take time but I'm sure you will get there especially with the help of the group. Please keep us updated. I wish you well.

I do feel for both of you ladies. I know only too well what you are going through. I have been through it myself with my youngest son Glen who has ASD and very challenging behaviours. He is 22 now and has been in a mental health hospital for 16 months. He is not doing well at all. A placement is being sought for him, but funding is an issue. I wish I had kept Glen at home, but then again I was struggling with his aggressive behaviour and would not have coped much longer. He sadly went into a residential home at the age of 17. Anyway, I do hope things get better for you both, I don't really have advice I could offer except keep pushing for help for your sons. They deserve as much help as possible. Sadly due to funding cuts etc things are not very good at the moment. Thinking of you both.

Hi, I attended a CPA meeting at the hospital yesterday, it was very positive. The O.T.'s and speech therapist are devising a plan which includes a means of communication and sensory diet for Glen. Their main aim is to provide Glen with appropriate coping strategies to lower his anxiety levels and hopefully reduce the number of incidents of physical aggression and self-injurious behaviours. Glen had a sensory session on Tuesday and really enjoyed it. Glen has trashed his room lots of times when he lived at the care home and yes it does happen very suddenly often without no warning. He has broke his door at the hospital and the water cooling machine. What staff have found can help Glen is at these times holding his hands or stroking his hands, it calms him down, but no you can't hold/hug him, staff are aware of that. So many times through the years I've wanted to just hug him but I know that I can't as it could make the situation worse. It is best to leave Glen in his room if he's had a melt down, he does calm down most times. I do agree Sally Glen could well be getting something out of his aggressive behaviour, professionals involved with Glen have always said that they have felt that he is always in 'control' of the situation. Yes Glen gets very frustrated and anxious he always has been like that. The hospital have definitely made progress with Glen since he's been there, he now gets dressed every day, whereas at the care home he hadn't got dressed in nearly a year. Glen has all his meals in the dining room or garden and not in his bedroom. I did not agree with the care home staff letting Glen have all his meals in his room I think that made him more isolated than ever from everyone else. I am pleased what the hospital staff have achieved in 2 months.

Thanks very much for your comments. Glen is still quite aggressive so not sure if the propranolol is really helping with that. He is also very anxious. Glen's been taken off diazepam, he just has lorazepam as a PRN.

Thanks for what you've said it does make a lot of sense. Glen is doing a little better than he was he had a reasonable weekend. The propranolol has really helped lower his pulse rate which was over 100 and is now down to a more normal 70. They are hoping the propranolol with help with his aggression, time will tell.

Thanks special talent I'm so pleased the propranolol helps with your panic attacks I'm helping it will do the same for Glen. I guess it's still early days as yet, although he has been better over the weekend, his anxiety has decreased staff were telling me.

Thank you very much for your comments, much appreciated.

Has anyone got experience with Propanolol? Glen was prescribed this medication just over 2 weeks to go to help with aggression. I have read up about it and it sounds really good. Unfortunately this week Glen has been particularly aggressive, but of course it's early days. I would appreciate any comments thanks.

Thank you so much for your replies, it does seem like hitting yourself is a sign of frustration trying to communicate how you are feeling.

Just a thought but if there is any other parent on here with a their who hits themselves particularly their head with force please let me know, have you any ideas why they do this, is it just their way of trying to communicate? That's the only thing I've come up with. Or is it just something an autistic person has to do as a sensory need. Any ideas, I would really appreciate it. thanks.

Hi, Glen had an MRI recently and results came back today, it was all clear, nothing showed up, I am of course very pleased and relieved but I honestly thought something would show up to explain why Glen hits the right side of his head with such force, so it's back to square one. Glen is still having on-going assessments hopefully someone will come up with something.

Thanks, makes sense, Glen probably does need to be reassured that he won't go back to these places. They did tell him that at the care home when he said he didn't want to go to School and now he's going on about respite, I will have to mention this to the hospital staff to reassure him that he won't be going back to respite.