To ask for advice re husbands Aspergers

[Sunny525]

My husband was diagnosed a few years ago, by chance, when he happened to be treated by an expert due to an unrelated emergency situation. Since then he/we have had no support.

We are in an underfunded area and have been told there is no support available. We keep going back to the GP saying we are about to have a crisis and clinging on but all they ever say is they will look into what is available and get back to us (and never do).

He is incredibly depressed and although he puts on a very capable (if a bit odd at times) face to the world as soon as he is alone with me he crumbles and it all falls apart.

We are at breaking point, he won't seek any help as he is too depressed and feels that it's pointless. I can see why he feels like this after years of no support but just don;t know what to do. He would hate any kind of informal support group and won't 'waste' money on therapy. If I suggest anything he gets angry and I am becoming the enemy.

How do you find support for an adult diagnosis of Aspergers? I think the diagnosis has been a double-edged sword...

Sounds like he needs support for his depression.

I have mild aspergers (and ADD). What support does he want? I don’t get any formal support for those two, it’s just how I am.

There is AFAIK no support for functioning adults with ASD.

But you can get help for depression and anger-management. If your dh is open to the idea of talking therapy, how about asking your GP for a referral for CBT for depression?

One of the challenges of ASD is the rigid thinking. Similarly with depression. CBT challenges that and helps you understand your world and relate to it better. But you have to be open to it.

Anti-depressants may also help, in combination with CBT.

Have you googled Autism ?
They are incredible in our area at providing support to those on the Autism spectrum and Aspergers and their families.

What support exactly do you think he is in need of?

Agreeing with Violette you need to try to get the depression under control, this is coming from another adult diagnosed with Aspergers later. Being autistic has always been a part of me, I only struggled majorly when I was depressed/anxious.

CBT helped a lot but you need to go into that from a fairly strong position

Contact the National Autistic Society on 0808 800 4104. They are so supportive and will tell you your local branch details.

Get your GP to refer you to a psychiatrist.

Ask about anti-anxiety medication (not antidepressants). In our family we have found Quetiapine to be extremely effective.

This will made a huge difference to how he copes with the overwhelming stress of everyday life.

It's usual to present with depression as a consequence of not coping with anxiety. In my experience if you can lessen the anxiety, the stress of having to cope with all the sensory input and the deciphering of social cues becomes manageable.

The trick is in finding a psychiatrist that understands the impact of high functioning autism, and can appreciate how much this can affect the lives of not only the diagnosed, but the family too.

Once anxiety is controlled, appropriate therapy is definitely an option. It needs to be Autism related as the needs are so different.

I wish you and your husband well, there is help available, but it's not an area many people know.

Quetiapine is an antipsychotic and is, in my opinion, awful. Makes you feel flat.

I should add, the psychiatrist is the suggested professional because only they can prescribe anti anxiety medication.

The GP can offer antidepressants but it doesn't treat the problem, only the resulting symptoms.

moving that’s not antianxiety. Antianxiety medication doesn’t exist, your three options are an antidepressant long term, an antipsychotic long term or a benzodiazepine short term, although this one is unpopular.

Describing any of these as antianxiety is disingenuous.

Violette a small dose can be extremely effective. Whereas we have found long term use of antidepressants made everything flat.

I expect its trial and error, different things work for different people.

I agree some people find it helpful but I think calling it antianxiety downplays the serious nature of the drugs.

For me, the only thing that works is occasional benzos, but good luck trying to get anyone to prescribe that.

movingtowardsthelight I've known plenty of GPs prescribe anti anxiety medication...
And Quetiapine has always been a last ditch attempt because it's an antipsychotic, my family have had it for a number of reasons including depression, epilepsy and anxiety.

The medication was prescribed by an understanding psychiatrist and getting really good results.

It's not a general treatment, it's low dose, but surely one that's worth consideration.

In our family it's been life changing.

It is worth considering.

I find practical support is more helpful than anything else. So having family members who can help me with documents (I’m rubbish at admin) or who can help me with a task I’m struggling with, although I appreciate not everyone has this. Mine is fairly mild though, no one would know.

What it is about his Aspergers that is causing the depression? Was he depressed before the diagnosis? Aspergers isn't an illness, it's a behavioural issue, so there is no treatment. It's just a matter of understanding and developing coping strategies to deal with difficult situations.

I was diagnosed a few years ago in my late 40's. Just knowing there was a reason why I did certain things, why I was different, etc was a great relief to me. It has given me the freedom to just be myself as most of my anxiety of the past decades was down to simply not understanding why I behaved as I did and lamenting the fact I had few life long friends, hated social events, became stressed meeting people etc. Quite simply I spent too long worrying about things, spent too long stressing at social events/meetings, constantly evaluating my actions etc. Now I've been diagnosed, it's a great weight off my mind, and I now freedom to be myself, I no longer question everything I do, I don't try too hard to fit in at social events, etc. I am now free to be who I am and not who I tried to me.

I got no professional help - I just did a lot of googling and internet reading to understand about Aspergers.

It isn't easy to find the balance and there are so many medications to try, for example my DNan takes antihistamines for anxiety, they work very well for her (she has dementia)

Finding a psychiatrist in the first place can be hard enough unless you go private so I would agree with practical support but again that only works with a half decent mindset.

Quetiapine is an all rounder. It’s an antipsychotic that also happens to assist with generalised anxiety disorder and major depression (although it is recommended that it is used in combo with a traditional antidepressant if treating depression). It’s mainly off label for anything other than traditional antipsychotic uses, not because it doesn’t work for the other stuff but because $$ wise it’s not worthwhile registering it for these uses. Enough trial data exists though that psychs will happily prescribe off label. As with all meds it’s not a fit for everyone, different strokes (meds) for different folks and never more so than in the mental health arena.

OP, it sounds as though the problem is not Aspergers as such but the specific symptoms that need to be addressed. In this case the depression, someone has to sort that out and as PP said it may well be the anxiety component may be kicking that off, or not. That’s what psychs are for, to tease that out and prescribe accordingly.

I’ve also got an Aspie myself and as they have passed through childhood and entered the world of responsibilities and expectations their management/treatment had to change to adjust to this. They are currently on a combo of antipsychotic (split low dose) and an ADHD med. at times they could definitely benefit from a benzo but that’s limited to exceptional circumstances. They generally trundle along ok but things evolve and their management has to change with that.

The GP can offer antidepressants but it doesn't treat the problem, only the resulting symptoms.

It's easier to accept CBT and work towards changing your thinking habits when the symptoms are treated with ADs

I wish I knew the answer to this one as it is a problem for 2, if not 3, members of the household. Charities like Autism West Midlands have a support chat line that might be helpful to ring - if only to let off steam. They run some courses and support groups also that might be helpful. Medication hasn't helped the members of my family affected but is worth considering. Reducing anxiety and demands certainly helps ds2 and dh although is not a complete solution. We also find that the depression is contagious - by which I mean that one depressed member of the household is likely to trigger the low mood of another! So one of the best things you can do is make space for yourself to preserve your own mental health. If you are in a good mental health state you will be better able to support your dh

What support would you/ideally like? As others have said, there isn’t much!

I find melatonin to help me sleep makes a huge difference (its stops that lying-awake-mind-racing thing, and makes things easier to cope with things generally when I’ve had some sleep). As others have said CBT could be a good option. In some areas you can self-refer.

Thank you so much for all of your replies. I'm reading them on one tab and answering on another so hopefully, my reply won't be too disjointed.

He is on antidepressants and has recently changed and although they did seem to be better he has slipped back into low mood, he is on a high unlicensed dose too.

We keep going in circles with CBT referrals but nothing is happening, we have an appointment next week so I might ask for the psychiatrist referral if they still haven't done anything about CBT.

I think he is starting to suffer with anxiety too, he won't answer the phone or speak to people most of the time and is twitching/tapping which he has not done before. Bizarrely at work he appears overly cheerful and works overtime takes on extra shifts etc.

I think the Aspergers side of things is because he can't cope with people doing things 'wrong' or lying about things. He can't understand why people say one thing and do another, I think he finds it exhausting and maybe feels that he doesn't fit in, he has to second guess himself and everyone else all of the time...

I suppose I'm not really sure which bit to ask for help with first, it's been 5 years now and things are not getting better, I feel they are slowly getting worse, we are just existing... He is depressed and anxious and has Aspergers, he is on anti-depressants but not keen to take them and feels that it's all pointless anyway, the GP is very nice but just says he will look into it and we can see him anytime, nothing seems to move forward...

Does he have any kind of hobby? Is there something that he can do as a self-soothing behaviour?

My dh runs. The rhythmic physical activity, that he is in complete control of, grounds him. He also likes running the Hornby trainset, and doing the puzzles in the newspaper. (Yes, we are an unashamed, out and proud family of geeks .) I leave him strictly alone when he's running trains, but the good thing about the puzzles is that it's an activity that we both like doing, we can join each other and do it side by side. and so it helps both of us to come back out of ourselves and back into interacting with the family.

Avoid quetiapine at all costs!!!
I was on it two years, I gained 8 stone and was a potato. No life at all

My husband has aspergers and suffers from depression. It was very bad a few years ago, he was suicidal, hardly got out of bed. He has been on quetiapine and citalopram for about 4 years now and these keep him stable. He now works full time, has had a few promotions in that time and we are actually a happy family now with lots of laughter something I never thought was possible a few years ago. He tried many anti depressants before settling on this combo and this is what works for him.

His aspergers still makes things more difficult for him and us but I give him a lot of support and we have worked out ways to deal with issues that arise together. It's not roses all if the time and I take on and problem solve most of the stresses in our lives because stress is something that he just can't deal with but for now it is working and we are mostly happy.

I will say don't forget to look after yourself in all of this. Once we were through the other side with my dhs depression and things got easier my mental health took a turn for the worst and anxiety is something I struggle with now. I had put so much into taking care of him I had completely neglected myself and it was only once we were past the worst of it my body seemed to register how stressful and awful it had been for me too and I fell apart.

I was diagnosed with autism 6 years ago and I have recurrent severe depression. I've been referred to my community mental health team and I have a CPN, psychiatrist and CBT therapist. The package for CBT therapy you get when referred through the CMHT is much better as it's 36 sessions as opposed to the quick 6 sessions you'd get when self referring. I'm on quetiapine and lofepramine and I don't find I've put on weight, I'm on a very low dose though (25mg quetiapine) which helps me sleep and takes the edge off my anxiety. I have tried a lot of other antidepressants over the years (been in the system for 25 years) - it really is a matter of trying lots of different options before finding the right combination for your DH, although a good psychiatrist will help (and can prescribe the more unusual/expensive options).

I've found the specialist services for autism pretty poor - my mental health is treated separately from my autism and I often end up having to educate professionals about how my autism affects me.

I've found self-help groups more useful for autism, I've also been part of some research studies which also put me in touch with some autistic adults which has been helpful. There's a lot of information and books out there as well, by self-advocating autistic adults, although often I find I don't relate to them as they have a different profile of needs.

I am too disabled to work and I get PIP and ESA, which helps pay for activities which help my mental health, e.g. sports club and gym and creative arts. I've found that more useful than paying for therapy.

Chilledcoke my dh is on 25mg of quetiapine too and says the same it helps him sleep and take the edge off. He takes it before bed every night and is out like a light. He used to be awake until all hours before that.