Published on 12, July, 2020
Hi everyone,
I'm just wondering if anyone has any advice.
Today has been a difficult day for both me and my partner. The focus was to visit the doctor in hopes of putting on some sort of medication to help with anxiety, but also he's been feeling a lot of empty sad feelings as well and has been feeling extrrmely lost.
The doctors appointment didn't end up going to plan, we were very organised having written a list and were very clear on the plan considering he has been advised medication by his support worker and mental health professionals (he is waiting on therapy we have been waiting a year now). The doctor ended up reducing his antidepressant dosage, saying that it is just the ups and downs of life and our climate and saying he thinks that his dosage was too high and therefore has not been working. (This of course is a plausible option but I did point out that my partner has been on this dosage of medication for years and has never had a problem with it, and bearing in mind this doctor tends to just anything wrong down to whatever meds you are on at the time since both my mum and I have been in this situation with the same doctor).
Having not gone to plan, we came out of the office and my partner went into a silent meltdown the whole walk home, and then we got home and he broke down, done his thing of running to bed and was in a very bad situation. (We can't pinpoint whether it was down to the fact the appointment didn't go to plan, or whether he just really hates the way he is, maybe both). We went through a very difficult time then, with some very awful things said. He really struggles to understand himself, and I know he will get therapy on how to cope later with technniques. He despises himself and it is so incredibly hard to watch.
He says he feels like his mind is separate from his body, like there is someone separate controlling his brain who takes over and says things he doesn't want to. He also says most of the time his brain doesn't work, like someone is taking over and blocking it, he doesn't know what to say, when to say something, he also has constant questions in his head on what to do in every situation. The only example I can remember (I previously posted on having trouble approaching my partner for sex which in comparison doesn't seem like as much of a problem at this point), we've tried sex a few times since that post and we have had to stop because he gets overwhelmed by being hot, he also has questions in his head of what he should do, he doesn't know what to do. we have agreed I will write him a list of things that will help us. Other than that he just really doesn't understand himself guys and its honestly so sad, He is in a constant fight with himself, he detests himself, says he doesn't know what to do and that he wishes he wasn't the way he is.
I've kind of lost track of the point of this post if im honest, my head Is just so overwhelmed. I think I need help on getting him to understand himself, excepting himself, learning its ok to be himself and he can get through it. coping mechanisms, some sort of home treatment until I can get him to see someone, the stress is just overwhelming him because he isn't able to know why it all happens and what happens to him is his so called normal (What Is normal anyway, i just want to say that because there isn't such a thing but its the only way I can explain it). Also is this classed as sensory overload? Thanks, Beth
Just found this on the website, sounds very much like what I’m trying to get across to you. So my overall worry is, is it possible to train the brain to not think of these obsessions when not relevant? Sounds like a lot to ask I know, and it may sounds horrible but I promise that is not my intent. We both just don’t like how it takes over.
Hi everyone, was wondering if I can toggle your brains again. My partner is still waiting for therapy which is getting quite tough for us both now. I’m interested to hear your input on the situation of being fixated on something. A subject or multiple subjects at once, brain overload. My partner and I are able to live quite a normal life. We get by and adapt where possible. I think we are doing well considering the lack of help we’ve had. There’s one thing we really struggle with, it’s him being fixated on something/things. If I ask him to do something he might forget straight after because his mind is blocked by things; he said explains it to me as his brain being fixated on anything and everything and he can’t get past it. I can get past the daily tasks etc that don’t get done, but sometimes (even though I know the reasons and support him) I end up getting upset because I feel unwanted and initiate things more than him, he says the thoughts and feelings are there but his mind is fixated on other things and doesn’t let him get to the other stuff. This might be a long shot, and I’m not looking to change him at all, I just want to know if there’s anything we/ he himself can do to intervene these distractions? Or do I just get used to being the one that’s more affectionate and initiating things in the relationship?
I’m so sorry @Trogluddite I really appreciated your answer and never got round to replying. All of this makes total sense. My partner suffered with the depersonalisation all the time. Thank you so much for your input, i read it to him and it made him feel better.
Bethanie96 said:He says he feels like his mind is separate from his body, like there is someone separate controlling his brain who takes over and says things he doesn't want to
In psychologist's lingo, these would be called "dissociation", which is usually broken down into two forms; "derealisation" - the feeling that the world around us isn't quite real (as if it's a computer game or movie), and "depersonalisation" - the feeling that our physical presence or thoughts might not be our own. It seems to be quite common for autistic people to experience dissociation (I have episodes of it myself regularly), and as others have indicated, it's much more common when we're feeling burned out. Dissociation can also be a symptom of the problems with executive functioning which autistic people (and those with AD(H)D) experience - that is, the part of the brain which turns our thoughts and plans into action is impaired, making us feel robbed of a sense of agency (the feeling that our motivations lead to the desired changes). Notably, these are all things which I've found can be made worse by high doses of anti-depressants, due to their sedative effects - so there is a chance that a reduced dosage may help somewhat, albeit that the GP has maybe done the right thing for the wrong reasons.
His confusion about his own identity is quite common too, especially for those of us who've recently received a diagnosis relatively late in life. The reason is quite simple, and is hinted at in what you've said already. Since our instinctive reactions to social situations have often been deemed "wrong" throughout our lives, we try to find ways to correct for this - using conscious analysis and explicit memories to compensate. This is what we usually call "masking". Because we've often been doing this since infancy, we can end up with a very weak sense of self, because our every action is dictated by our analysis of what we think others expect of us, which can become ingrained to the point that the masked version of ourselves is the one which we most identify with ourselves. We can get to the point where our own internal motivations and feelings seem completely moot, as we're never going to allow ourselves to act upon the answer anyway. Hence, post-diagnosis, many of us go through a period of feeling that we don't know who the "real me" is.
The best advice I can give you for the short-term would be to encourage your partner to participate directly in forums such as this one. Following my diagnosis, nothing helped me more than to know that I wasn't alone in experiencing these kind of problems, and to talk to other autistic people who were at various stages of the process of recovering their sense of identity and agency. Most importantly, such advice comes from people who have actually lived with these experiences, which, however well-meaning professionals might be, they usually haven't - their answer is often to try to modify the behaviours without understanding the motivation behind them, which at it's worst can actually be extremely frustrating and counter-productive.
As you put it yourself, the key is to learn that it is OK to "be ourselves" much more than we're used to - even if it's only when we're in a safe sanctuary such as at home, it greatly relieves the exhaustion and frustration which masking can cause.
Best wishes to you both.
It's frustrating that there's so little support out there.
I'm glad you were able to get some support from the mental health service - hopefully CBT will really help (I'm finding it very effective for my OCD). It's good that he has his employment advisor supporting him too.
I can tell that you really care about him. Ignore the people who tell you it won't work - opposites attract sometimes (I actually think it's better that my partner is neurotypical... our brains work in different ways, so we complement each other, and we can support each other in different ways).
Thank you x
I just wanted to share this interesting article I just found
nakedbrainink.com/.../
Thank you Kerri-Mod I will keep this in Monday
Hi Bethanie96,
I am sorry to hear that you and your partner are struggling with so much at the moment.
There's information on our website for partners of autistic people here: https://www.autism.org.uk/about/family-life/partners.aspx
You may like to contact our Autism Helpline team. They can provide you with information and advice. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). The Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor. There's more information about the Helpline here: https://www.autism.org.uk/services/helplines/main.aspx.
I hope that is of some help.
Regards,
Kerri-Mod
BigD I'm so sorry its got to that, its awful. I hate to admit but sometimes i forget myself and get angry with my partner but at the end of the day im sure your partner is in the same situation as me in that they just want the best for you. I hope things get easier for you, get all the family support you can get incase its a while before you get professional help. My partner hasn't been in work for a number of years due to not knowing what was happening with him, and even now he has his diagnosis he will not be in work until he is absolutely ready.
I know what you mean about lack of support. I was diagnosed ASD a couple of weeks ago, now I’m in limbo. I started a new job on Monday night, tonight a had a breakdown and couldn’t go. My partner doesn’t understand what’s going on with me, she gets frustrated and angry, and makes me worse, I’m now at the wishing myself dead stage. Keep looking for somewhere to get help for both of us, it’s not easy to find.
Hi DuckBread, Thanks for your reply.
We have a formal diagnosis yes, diagnosed Nov last year. We don't have much support in our area to be honest, as I'm sure is the same most places. We are waiting on one to one support and i was told about SPELL training but i can't have access to it because its only used for teachers in an educational facility which i am quite disappointed at as we thought it would really help.
Yes we got a lot of that with the doctor too. We self referred with our local mental health team too and thats what got us somewhere too. I believe we are waiting on CBT, i hope councellinng will be involved to although the info we have about the future help is vague. We are due to be helped roughly Dec time.
The most helpful person we have been in touch with so far is his employment advisor, although he is not ready for work yet she is kind of a personal councillor, gets him in touch for local classes to help with budgeting and things which i am grateful for as it takes the pressure off me a little.
Will take a look at the autism pack so thank you for that. And it is really lovely to hear someone aknowledges the help i give other than him. Its also nice to hear another couple who are half neurotypical have a strong relationship, considering most people i have been in touch with including family have told me it wont work and we won't survive.
Thank you for your input and we wish you the best too. x
Graham Slight Return Thank you, we will take a look!
Hi, Bethanie. I'm really sorry to hear your partner is struggling - it sounds like a very overwhelming time for both of you.
Meltdowns can happen as a result of sensory overload. Sometimes, they can also happen due to information overload (e.g. if he's hearing lots of info from his doctor and struggles to process it all).
Does your partner have a formal diagnosis? I'm just wondering whether this would help him to get access to better, autism-specific support (I'm still waiting for my diagnosis, so my hope is that I'll be able to get support in future, but I don't have any experience with that yet).
My GP was also really unhelpful when I went to speak to him about my mental health and my need to pursue an autism diagnosis. He was so dismissive and uncaring (thankfully, I've since found a much better doctor). In the end, I self-referred to my local NHS mental health service online. The mental health nurse who assessed me was really helpful; he got me access to counselling for my anxiety, which then led to cognitive behavioural therapy (CBT) for OCD. The nurse also helped me to successfully build a case for my autism assessment, even though it isn't a mental health condition. He was the person who referred me and I've been told that I will get an assessment; it's just a long waiting list.
I wonder whether this information might be useful for your partner's GP surgery? You could also try asking whether any of them have autism experience: https://www.autism.org.uk/get-involved/media-centre/news/2016-07-25-gp-autism-packs.aspx
It sounds like you're a really caring partner who listens to his needs and is taking the time to understand him. My (neurotypical) partner had to take things quite slowly with me, but it's helped us to build a really strong, trusting relationship, where we both take care of each other.
I hope you both get the support you need to move forward - it's lovely to hear that you're coming at this from a completely supportive place.
Hello,
Your partner might like to read this.
https://queenofthedrowned.com/2019/05/26/resources-for-burnout-recovery-featuring-the-autistic-social-network/