Bereaving with autism

[SquidleyDidley]

Hello. I am an autistic woman and have been masking my whole life. Now I’m approaching 40 and dealing with a bereavement and I’m not really sure what to do.

I hope that makes sense.

It feels like I fake 99% of my life/reactions/emotions and have done for so long that I now don’t really know how to feel. I don’t think I’ve dealt with it at all and my brain has just removed the person from my head/daily life. I can talk about them and it isn’t like I ignore their previous existence, but it’s like it’s not real. I also spend time in a fantasy world in my head so that doesn’t help either.

On the rare occasion I actually think of them, and realise they are dead, and I’m not going to see them again, I feel like a huge wave of emotion break inside, but I immediately stop it and close it down.

Sorry to ramble on here, I don’t really have anyone to talk to about this and I think I need a counsellor but I don’t think they will understand how my brain works. This has also been going on for a year so I’ve had quite a long time not knowing what to do. Do autistic counsellors exist?

Sorry for your loss. I had a similar experience when my first dh died. I just went into auto pilot and couldn't cry or process the grief. It was horrible. I eventually used to put some very emotive music on and force myself to cry and face the loss. I eventually got better. I did have some bereavement counselling as well.

I think bereavement counselling might help as it's pretty non judgemental and I find, as an autistic, I like to process things on a cognitive rather than an emotional level first. Do you think this might be a useful of doing it for you?

So sorry for your loss. It’s hard. Definitely speak to your gp and tell it as you have here or, write your feelings down and hand it to reception before your appointment, if it’s face to face.

I’m late diagnosed and completely understand what you say. Take care

Sorry for your loss. I feel very much the same following the bereavement of a parent 18 months ago. I kept waiting for the death to properly hit me but it didn’t, or at least not as I expected it to. It also just feels like I have been able to remove them from my life, my parents lived a few hours away so I didn’t see them often and so my life has mostly just carried on. I feel like I should miss my parent but I don’t, that’s not to say I don’t feel sad when I think about the fact they’re gone but it just comes in occasional waves and, like you, I can usually just shut it off. I know others who needed a lot of time off work following bereavements but I felt fine to get back to my normal life within a few days of the loss, which was sudden/ unexpected.

I don’t have autism but I suspect I have ADHD (awaiting an appointment to go down the formal assessment/ diagnosis route) and also feel that I have didn’t most of my life masking. I recently read that it is common for people with ADHD to struggle with remembering things if they’re not in front of them, as in things tend to be out of sight out of mind. (In some cases I’ve seen it written as issues with ‘object permanence’ although I don’t think that’s strictly true. I know there can be some overlaps between adhd and autism so I wonder if it may be the same for you, that it’s hard to remember or feel connected to things when they’re not right in front of you.

I’m sorry I don’t really have any advice but I just wanted to say that I understand as what you’ve described sounds similar to my own experience of being bereaved. I have tried to accept that is just how I will experience the grief although I admit I do feel guilty sometimes, as if I obviously didn’t love my parent enough; it sounds so awful to admit that I don’t really feel as upset as I probably should have done and that day to day I hardly even think about the fact they’re gone but that’s the truth of it.

I'm sorry for your loss. Regarding autism counsellors, yes they do exist.

But finding an autism specialist is some times tricky, finding an autism specialist who will also deal with bereavement might be even harder. I would start at www.bacp.co.uk/ and look for an autism specialist in the first instance.

I am sorry for your loss.

My mum is autistic. These are the notes I took when her sister died on how to relate to her.

In particular she had very heightened sensory reactions (e.g. hearing the neighbours in a terraced house made her jump) and couldn’t understand my perspective (it was shocked as it was unexpected for me).

Autism and grief

Reactions

• May react with very practical concerns as they search for ways to make life predictable again and reinstate routine
• May wonder if the same thing will happen to them or others that they know
• May have a hard time expressing their feelings
• Want to attribute a cause to the death
• Sensory overload may intensify (Hard to focus, put relationships together, make sense if things visually) this is a type of meltdown.
• Other people’s denial and bartering may not make sense. May not understand nuances of other people’s emotions (happy/sad/anger/fear)
• Might have a different relationship model

I'm so sorry you're going through this, you're not alone. I find funerals and mourning stressful because I can't "perform" grief. I don't cry, I'm quite matter of fact and tend to take on things like readings and eulogies because I'm so calm. However, I then get the questions about how I can be so calm about it and some snidey comments about it from friends and family.

I sometimes wonder whether our autistic place in evolution and history is to carry out some tasks for our communities that others can't do, like funeral rites - it seems like as we've become indoor beings working in people-facing service industries we're having more problems!