Autism, depression and exhaustion

Specific disabilities and conditions
1

Hi All,
I am new here. I am not sure what I am looking for other than an opportunity to express my frustration/exhaustion and maybe some advice.

Background: I met my partner a little over five years ago. We have gotten on very well for most of that time and for at least the first couple of years had a real easy going relationship. Over the last three years however, she has become more and more in need of support to the point that I consider myself to be providing her with care. My partner has a range of difficulties, she was diagnosed with autism a little over a year ago, she has very sever eczema, had a very traumatic childhood (including domestic violence and periods of homelessness) which left her with some serious emotional problems and is currently being treated for long term depression.

I have read a few threads here about autism carers battling against a system that seem set up to ignore the needs of the person the care for; and that is very familiar to me. I spent the best part of a year trying to access diagnostic services, another year lobbying her university to take her case seriously and I am now in the middle of another battle with mental health service to provide support for her depression that takes her autism into account.

At the same time, it is very clear that she has given up. She has no faith in other people to help her and is very resistant to access help or taking steps to improve her wellbeing. It feels like I am constantly caught between trying to keep her head above water by reducing the immediate stress she is under and trying to take steps to address her underlying problems.

All of this is taking place whilst I am in the middle of a PhD and have very little support in caring as my partner has no support from her family and is very resistant to support from outside the relationship. I am running out of energy to keep this up and it is very difficult to express this in the relationship as any acknowledgement of the stress I am under leads her to feel incredibly guilty.

I did not enter this relationship with any sense that I would be in a care role. However, I have never felt resentful of this shift in our roles. She is a very caring, intelligent and passionate person; I really want what’s best for her. What it comes down to is, I am tired, I am just really tired.

Reading this back, I am not sure what advice am looking for really. Maybe just, do you have any advice on how to stay positive when the person you are caring for is refusing to engage?

All the best,
Ben

2

Hi Ben
I have a relative who is autistic and now nearly 40. If there one saying that annoys me is the number of so-called professional who seem to expect him to “engage”. In my experience that word should not exist in relation to anyone autistic . You are, imho, on a hiding to nothing to expect her to engage. “Engage” is such a 'Neuro typical 'concept that has so little relevance to the different way they think that you will be forever setting yourself up for disappointment.

Yes there are topics and times when she may be interested and relate for a while, but full ‘engagement’, no, that is too much to ask.

Yes, you are right to try and get the depression treated and the trauma addressed but both things will be running so very very deep in her that it may take a life time, and still not be fully cleared. Unfortunately few people in the mental health teams I have come across have any understanding of autism, and even less how that complicates MH issues.

As you can probably tell, you’ve touched a raw nerve here and I’m not sure how much more to say.
You have been a great support but your exhaustion is telling you something. You can continue to try pushing a stone up a hill, or you can step aside, having put a prop in place so it doesn’t roll back, take a breather and consider how much longer you can carry on for. Either others ( family or professionals ) must step in or she must take some of the weight herself (remembering her depression may prevent her doing this). I think you have already worked out for yourself that this situation cannot continue if it is going take 2 of you down.

Kr
MrsA