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"Female" autism and "coming out" at 40

Asparagus

Hello future friends,

I'm here because despite having a satisfying family and social life (to date), I'm surrounded by NTs and completely alone in my autism journey. 

I'm a few weeks into realising I'm autistic and will have a diagnosis in about a month. Since I've realised I'm autistic and started the "coming out" process, I've had waves of relief, aha moments, upset, feelings I can't name, confusion, meltdowns, shutdowns and just generally all over the place. 

I had all the signs - very few close long term friends, relying on my husband's social life, book smarts, landing good jobs that then lasted only a year, meltdowns and shutdowns, social awkwardness ("she's so quirky"), weird sensitivities, burnout from having young children. My psychiatrist suggested I had autism, I didn't really think much about it, until I saw a TikTok, and it all started making sense. I then listened to the Devon Price audiobook which - despite being left leaning and gender queer - really resonated with me. But now the aha moments are over, and I'm waiting for the diagnosis / management plan that will probably take weeks to fall into place.

Here are my questions:

1) The journey: How did other late diagnosed / middle-aged people react to realising they are autistic? How long does it take to feel yourself again, or re-orient to the new reality?

2) Unmasking: How have late diagnosed / middle-aged people unmasked to their partners, kids, friends, at work? I can't really get my head around what unmasking entails. The Devon Price book suggests being as unapologetically weird as you want, but I can't, I've hidden so much for so long, the thought of doing my weird things even in front of my husband or close friends makes me die on the inside. I do my weird things in front of my kids but they are very young and I will probably stop once they start noticing. Can anyone else relate to this and if so, how do you move forwards from here? 

3) "Out of body" experiences: Does anyone else have these glitches or fleeting sensations where, you're at a pub or a shop, or even alone in your back garden, and suddenly you feel like you're performing in a play, or being observed, but by noone in particular. And sometimes everyone else around you is a part of that play also, sometimes its like you're performing for them. Since I've realised this is an autism thing, I've begun pointing out to my husband whenever it happens, and, to be sure, he does not share this experience. Does this happen to you? Do you know why? Does this go away with unmasking? 

4) Kids: I suspect my 2 year old is a bit like me. It may be a while yet before a diagnosis. In the meantime, what would your advice be on doing the best thing for my child, even without having a diagnosis? 

Would love to hear from your experiences 

x

Parents

  • Hi Asparagus 

    I am quite new here approximately 18 months to 2 years.
    I can give you some brief experiences of my own but just know that things may well be different for you. I am not in a great way at the moment as I’m in hospital with an abscess inside my throat and have been very anxious with lots of meltdowns and very emotional. 
    I will try my best.

    Most of what you talk about I can very much relate to, unmasking is difficult when you have used it for so long. I truly believe you lose your identity and that’s a journey I guess to rediscover that. I have found unmasking easier with strangers but as controlled as I can make it. Small steps for me. I can unmask with my youngest son as he is also autistic. 
    My partner does not know I have a diagnosis, she is quite controlling and uses anything she can to better her position in the relationship. 

    Q1

    The diagnosis has taken from 26th June to this day so far for me to be able to part process but not entirely. The main sticking point being who is the real me? The masked version I chose that took over many years ago or the unmasked one that remains I imprisoned in your head until it’s safe for you to let it out?
    The assessment based on my family life was a very stressful build up and the assessment itself I found completely exhausting and emotional. I had no clue how I represented myself but I was able to unmask partly. I supplied them with everything that goes on with me beforehand so they could base some of their questions on my experience.

    Q2

    Think I covered this before Q1 but I believe for me this is going to be the difficult one for me personally. I hear of others that have dropped the mask to a degree but remember we do need that mask sometimes to remain safe in certain circumstances. 
    I try to spend time alone and ask myself does this genuinely bring me pleasure or do I feel comfortable. It does help. 

    Q3

    It is fair to say I experience this and after a few hours I tend to make an unannounced exit and care a little less about if that appears rude. I do feel like I’m playing the part of a very uninteresting person who mostly wants to ask questions so that I don’t get pressured to answer their questions. I have challenges with keeping up and delivering the words I cannot find in my head sometimes which attracts negative attention from others, asking questions diverts that as typical people generally like to talk about themselves. 
    For me I don’t know if unmasking is possible in those situations, remember that neurotypical people mask but I suppose for different reasons. What is possible for me is to limit my social expectations and remove myself when necessary to stop it all spilling over. I have often felt exhaustion after these events as well as uncontrollably crying and going over what I did and said with who. I try to find a balance but ultimately I would probably choose for myself not to attend if that was an option. 

    Q4

    Collect information to learn and observe and better understand your child’s needs. 
    Journalling has been the best method I found to identify triggers and patterns of behaviour with my youngest (diagnosed last December age 9).

    I used these notes to give my sons therapist an insight into what was happening for him after his last session and before his next. 

    I wrote a manual for my son for family members so they can at the very least have the information to understand him better and try to accommodate him. 

    Probably try in the future some parent workshops, there are loads of free stuff through the local authorities and also charities.

    I hope I have helped? I could have gone into more detail but I have had a challenging day and need to sleep now.

    Good luck anyway and you are not alone. 

Reply

  • Hi Asparagus 

    I am quite new here approximately 18 months to 2 years.
    I can give you some brief experiences of my own but just know that things may well be different for you. I am not in a great way at the moment as I’m in hospital with an abscess inside my throat and have been very anxious with lots of meltdowns and very emotional. 
    I will try my best.

    Most of what you talk about I can very much relate to, unmasking is difficult when you have used it for so long. I truly believe you lose your identity and that’s a journey I guess to rediscover that. I have found unmasking easier with strangers but as controlled as I can make it. Small steps for me. I can unmask with my youngest son as he is also autistic. 
    My partner does not know I have a diagnosis, she is quite controlling and uses anything she can to better her position in the relationship. 

    Q1

    The diagnosis has taken from 26th June to this day so far for me to be able to part process but not entirely. The main sticking point being who is the real me? The masked version I chose that took over many years ago or the unmasked one that remains I imprisoned in your head until it’s safe for you to let it out?
    The assessment based on my family life was a very stressful build up and the assessment itself I found completely exhausting and emotional. I had no clue how I represented myself but I was able to unmask partly. I supplied them with everything that goes on with me beforehand so they could base some of their questions on my experience.

    Q2

    Think I covered this before Q1 but I believe for me this is going to be the difficult one for me personally. I hear of others that have dropped the mask to a degree but remember we do need that mask sometimes to remain safe in certain circumstances. 
    I try to spend time alone and ask myself does this genuinely bring me pleasure or do I feel comfortable. It does help. 

    Q3

    It is fair to say I experience this and after a few hours I tend to make an unannounced exit and care a little less about if that appears rude. I do feel like I’m playing the part of a very uninteresting person who mostly wants to ask questions so that I don’t get pressured to answer their questions. I have challenges with keeping up and delivering the words I cannot find in my head sometimes which attracts negative attention from others, asking questions diverts that as typical people generally like to talk about themselves. 
    For me I don’t know if unmasking is possible in those situations, remember that neurotypical people mask but I suppose for different reasons. What is possible for me is to limit my social expectations and remove myself when necessary to stop it all spilling over. I have often felt exhaustion after these events as well as uncontrollably crying and going over what I did and said with who. I try to find a balance but ultimately I would probably choose for myself not to attend if that was an option. 

    Q4

    Collect information to learn and observe and better understand your child’s needs. 
    Journalling has been the best method I found to identify triggers and patterns of behaviour with my youngest (diagnosed last December age 9).

    I used these notes to give my sons therapist an insight into what was happening for him after his last session and before his next. 

    I wrote a manual for my son for family members so they can at the very least have the information to understand him better and try to accommodate him. 

    Probably try in the future some parent workshops, there are loads of free stuff through the local authorities and also charities.

    I hope I have helped? I could have gone into more detail but I have had a challenging day and need to sleep now.

    Good luck anyway and you are not alone. 

Children
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