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My wife received her diagnosis a few months back at the age of 40. Now what?

Walter

Hi all,

My wife and I have been married for almost 13 years, and she just received her diagnosis in September 2018 at the age of 40. She has had ongoing struggles with social interaction and sensory processing, plus anxiety and depression all of her life, but no mental health professionals ever spotted the signs that autism may be a factor, and so she only began to suspect that she might be autistic in the past couple of years.

In a way, it has been good to get the diagnosis (although she has had the reportedly quite common experience of feeling very angry about having not been diagnosed much earlier in life), but now we're both somewhat at a loose end about what happens next. 

She is very dependent on me, on both a financial and practical day-to-day basis. She has not earned any money for a significant length of time, having had to quit any previous employment due to anxiety and depression. She has struggled to work as a freelance writer for a number of years but that requires a great deal of motivation, which she just can't muster. We are fortunate that I can afford to support both of us through my job, but my concern is about what would happen to her if something serious happened to me and she had to fend for herself. I have life and critical illness insurance but I don't know how well that would support her, or if she could even motivate herself to negotiate the process of claiming the funds. She also depends on me to make sure she is eating and taking care of herself. If I am not at home she will either not eat or only consume what can be eaten straight from the packaging.

A good day for my wife currently is if she can drag herself out of bed, do a couple of chores around the house, and maybe walk over to the local cafe.

She is on medication to help with the depression, but that is only keeping her from feeling suicidal. She still wishes that she was not alive, but has no intention to act on those thoughts. She does have a psychiatric appointment scheduled soon, but that really tends to focus on her current mood and whether the medications she is on are working. What I feel like we both really need is some idea of what other practical autism-specific resources are available to her to help her motivate herself and become somewhat more self-sufficient.

Is anyone else having a similar experiences? Or have you been through this and found useful strategies for moving forwards?

  • Hi there

    A diagnosis doesn't change anything really. If anything I found I had access to less help afterwards.

    It sounds like your wife is struggling a lot at the moment. It might be useful to seek help from local mental health services to first help you both come to terms with the diagnosis and then look at ways your wife can better manage the anxiety and depression. I didn't have any support and it made my post-diagnosis process very difficult.

    As for mental health, from my experience the depression and anxiety never really goes away - it's just a case of how well prepared you are to deal with it and how you minimise the impact it has on you. Easier said than done and it is a bit of a rollercoaster.

  • in reply to Candlewax

    Yes, from what I've seen it does seem that there is a lot more support available for children than for adults.

    My wife is American and does not yet have indefinite leave to remain, so she does not qualify for any public assistance. Fortunately I am able to provide all of the basic care she needs right now.

    I did just find the details of an autism mentor who operates in our area, so that might be something worth us pursuing in the short term.

  • I was diagnosed in August last year and immediately dismissed from primary care of the psychiatrist. I asked her at the time "what happens now?" and was told there is no cure, so nothing that can be done. She asked me what I expected but I was in too much shock at being told I have severe autism rather then the mild autism I was expecting.

    Since then, there has been nothing. No help whatsoever. However, from reading around and spending hours on google, I think the next step for me is to have a social care assessment - I don't really need any care at the moment - I am aware that times in my life I should have had it, but it puts me in the system if there is a time when I do need it again. 

    It's taken that time to recover from the shock, get over the anger/loss of childhood, etc. It really is like experiencing a death - the death of the child I could have been (I had my weirdness beaten out of me as a child), loss of the adult I could have been before I turned 46, etc.

    Add to that, the hell that is PIP/ESA (I haven't had the F2F for ESA yet, and am expecting the 0 award notice for PIP this week), all comes to a really crap 5 months lost. 

    Getting the social care assessment seems to open doors for other resources generally not available.