Autism plus complex needs in husband

For issues specific to autism / Asperger Syndrome.
So, my situation is a little different. I am physically disabled and my husband cares for me - my physical needs, along with carers who come in to help. I, in turn care for my husband who has autism and really complex needs. It's hard!

I feel awful for complaining because of what my husband does for me but I don't know what to do any more. My husband needs to be with me or near me all the time. He has severe anxiety issues and despite having his license for a year now, will not go out on his own. He needs prompts to eat and change clothes and shower. He needs prompts to do the same for me. It's not just 'it's morning, we get up, get dressed and have breakfast'. Lately he's been so high maintenance that I feel all of what I have is going into making life livable for him, decoding things and providing a really high level of emotional support. I feel like I have nothing left for me.

He has ADHD also, which we've just started medication for but the Dr has said that most of his difficulties will be life long, and it's really hit me! That was monday. Dr also said he had fetal alcohol syndrome but we're going to deal with one thing at a time!

Now I know autism! I have aspergers and my son does too (he's 17) so it's not like I don't know what to do and how, I just don't know if I have it in me. Really struggling!
Hi Vicky, welcome to the forum. Stop trying to be Superwoman and get some help. Start by asking for a Needs Assessment and a Carers Assessment for yourself. Then you can talk about what you have to do for your husband. It sounds like he's very dependent on you, my son has learning difficulties and you desperately need a bit of time to yourself. Come back here whenever you like, I know that there are an increasing number of people on the forum dealing with people with autism and aspergers.
Hi Vicky,
I care for S, he has autism and is 25. He needs a lot of reassurance and some prompts too. What I find most exhausting though is motivating him and the fact that he vocalises a lot and is very noisy.

I agree with BB's advice.

In addition, have you heard of the TEACCH approach? It's a way of supporting folk with autism to be more independent, it utilises their visual strengths and is a great tool to help them carry out routines independently. A lot of the best schools, colleges, residential services and autism specific support services use its philosophy.

Does your hubby like technology? There are some great apps that are aimed at helping folk (those without autism as well as with,) to follow a schedule.

Melly1
Thanks both. I need to be more of a regular here, having posted before, but the problem with husband always wanting to be glued to my side is that he also reads whatever I'm writing on my phone or computer.

It's been a hard day for me and I had to apologise after snapping because I'd repeated advice on how to do a thing 5-6 times and he did it wrong 5-6 times. Sometimes it's harder to stay patient and understanding than others, particularly when I have my own stuff going on.

I already employ the use of many lists on keep, which are shared, and a bunch of lists on the fridge. I have a whiteboard with our weekly itinerary but I organise all the home stuff; bills, shopping...literally anything that falls under the heading of faulting. The specialist did recommend the use of red cards so he knows when he's crossed the line with showing off and going over the top. Verbally asserting this in so many words is not effective. I also used to use PECS with my son, but my husband is 45. I don't want him to feel he's being babied or that I'm being incredibly pedantic.

He has such fantastic qualities and I love him so much, I just have to find a way to make this work long term. We've been together 5 years but things have gotton worse since he was made redundant 2 years ago. Since then he's been my full time carer but his issues have got that much worse!

I get direct payments for my own care so I think I will do as you say BB and make an appointment with social services to assess my husband and see what support there is available out there.

Much love to you both. Xx
This is a heavy situation and the sad part is that you cannot escape from this because it's genetic. I am just praying for you and the rest of the family.I can feel sadness in your house. Take care!
Vicky, was he more independent and confident and seeking less reassurance when he had a job? Would he engage with any thing like Aspire or other similiar programmes in your area? They are used to people with high anxiety. If he had a paid or voluntary job, even part time, it would get him out from under your feet.

I totally get the checking / needing reassurance thing S goes through phases of this being fine and then something will trigger a drop in confidence and he will seek it a lot more.

Over the years, I've realised if he's misunderstood, it's better not to say so. e.g. If I ask him to fetch a certain washing basket and he brings the wrong one down, I just thank him anyway and then ask him to go get the other one and later get him to take the other one back up. This way, it doesn't knock his confidence and require him doing lots of checking in the future.

PECS and Teacch are seperate. Teacch can be used at any cognitive level and is great for promoting independence, it's sounds like you are half way there already with your lists etc Since he is always reading over your shoulder, why not use it to your advantage. You could start using an organisational app yourself with the aim of getting him to follow its prompts instead of yours.

Melly1