Forum

Coping with MS and Autism.xxx

Hi all just wondering if there are many of us out there dealing with both MS and autism. Im a 30yr old mom of two, diagnosed with MS 8yrs ago and my son (6) was diagnosed with autism 3yrs ago. My sons behaviour is becoming more challenging and my body’s a bit more naff these days, if there is any1 in the same boat I’m after some coping better tips :slight_smile: xxx

Hi

I too have a son with autism but he is 18 and becoming increasingly independent so therefore doesn’t impact on my ms as much as it would have done if I’d been diagnosed when he was your sons age.

If it helps, it does get better and it does get easier.

Are you receiving any help or support? Do you get respite care for your son? My son doesn’t get any respite care now but it was a God send when he was younger. I don’t know how we would have coped without it and I wasn’t dx back then.

I know I having been much help but please let me know how you’re getting on and get.in touch if there’s anything at all I can help you with. Even if you just need to chat.

Caring for an autistic child is not easy, I know!

Take care.

Ann Marie

Hi Anne Marie thankyou for replying :slight_smile: we do get a bit of help from our parents but on the whole it’s just myself and my husband. My husband works nights however so in the week it’s just me and we also have a 3yr old little girl aswell. Who is it that provided respite care when ur son was younger? Jamie is going through a phase at the moment where he’s angry quite a lot which is new to us. So there’s a lot of tantrums and defiant behaviour! It’s very intense but I take comfort in you saying that it gets easier! Jamie is v hyper and my energy levels don’t match! We have found an autism support group that we are starting on Monday, think that’s 1 of the hardest things not really having any1 who understands the challenges of autism on a 24/7 basis! How long have you been diagnosed? I am starting to worry about the future because I see how my conditions changing, I never feel ‘well’ anymore whereas before between relapses I’d feel really normal. How are you’re symptoms?xx

Hi, My eldest (now 13) was thought to have autism because of his behaviour at school. He would crawl under desks during lessons and generally show lack of attention. We spent 4 years going through the system and in the end was told that he didn’t have autism but aspects of his behaviour have autistic traits. As he’s got older, things have got easier, but when he was younger he suffered from separation anxiety and would go hysterical if he suddenly found himself in a room on his own, even if I’d told him that I was just popping to the loo. It was very stressful and distressing for me. He’s now my main carer when my husband is away and I wouldn’t be without him. Heather

My son (16) has aspergers, its tough isn’t it!. He’s been on his new course since Monday and I’ve been sat by the phone all day as he was near shutting down this morning, if you have people you can trust let him go to them sometimes to give yourself a break, ive had my son home for a few months and I’m near breaking point , if his course doesn’t work out I don’t know what we will do. Give yourself head space when ever you can, its hard enough coping with ourselves, is there anything in particular that’s worse at the mo x

Thankyou for your replies ladies :slight_smile: I think I just need to remember that my son is still very young so fingers crossed it will get easier and he won’t be quite as demanding as the years go on. He is currently goin through a bit of regression I think so old habitsvresurfacing. Sleep issues have returned so that’s hard, noise sensitivity which makes goin out , constantly needing to know what we’re doing next and as I say just generally very hyper. It will get easier I know and I love him more than anything, just hope my body stays well so that I can always give him the level of care he needs.xxxxx

Hi Tamara It’s just coming up for a year since I was officially diagnosed though it looks likely that my first symptoms were probably about twelve years ago. The respite we received was funded by social services and was provided by a local nanny agency. We had a lovely girl come to our house every Saturday afternoon for four hours and she would either stay in with Conor so I could go out with our younger daughter or she would take him out so I could enjoy some time at home. In fact we are still in touch with her now though she stopped looking after Conor about ten years ago. Do you receive DLA for your son? We have received DLA for Conor since he was 3 years old. I know it doesn’t seem like it now but it really does get easier. I think the hardest time for us with Conor was when he was about age 4 - 6. Once he was settled into full time education things definitely started to get easier. He’s 18 now and you wouldn’t recognise him as the same child he was back then. He’s doing really well. He left school in June and has just started a full time course at our local college. If some one told me back when he was six that he would be doing all these things I wouldn’t have believed them. Take care Ann Marie

There is someone on this forum whose son has autism. Her family was featured on a television programme - and her son did eventually get placed in a residential specialised home. He looked as if he was going to do well there. l have wondered how he is now. They seemed a wonderful family. l have forgotten her name - but she did post to remind us to watch the series.

l wish you all the best.