Getting a diagnosis asa a woman who masks by default

Does anyone who masks most of the time have any experience of getting a diagnosis? 

My daughter was diagnosed 5 years ago and 2 psychologists at the time suggested that I’m also autistic  Since then, I’ve read loads and realised that I am, which makes sense to my husband and family too. I now want to get a formal diagnosis but am worried that I’m so used to masking and relying on scripts and with anyone not immediate family, that whoever assesses me will miss it. Im 51 and a woman who works as a journalist so I’m used to talking to strangers and have developed all sort of strategies for hiding who I really am.

I’m just worried I’ll be told I don’t present as autistic so am wondering how to get an assessment with someone who understands and can see beyond sophisticated masking techniques that I’ve developed over decades. 

thanks 

  • Oh this is ABSOLUTELY fantastic!  

    I feel all of the above tho- how exactly do you have an escape nest under the stairs no one knows about!? Amazing. 

    I grew up in the states, have tried numerous times to get help and no one seemed to know a thing about autism tho my mother asked if I had Aspbergers (we’re not close) and I was livid she thought I had enough money to get help. 

    I have had lessons and disciplinary training in all kinds of things which helped me camouflage my way through life (until I kept getting let go from jobs). Ballet, gymnastics, geometry (my distance, navigation and calculation are rather exacting), Logic!! And various acting/improv and yoga classes.

    apparently I come across “intelligent enough” to be able to “figure it out” Rolling eyes So I’ve been told. 

  • yes the Lorna Wing Centre is really good it was mentioned at the top just emphasising it i guess

  • Thanks all. I can relate to your beer theory Michelle. I can maintain and turn ‘on’ to do what I need to do (mostly) but it’s exhausting and doing it for too long means I end up struggling to even do basics or just shut down (I become physically unable to speak, even at work or with people I know well, or it can be like my senses start to blur and I can’t see or hear properly, it’s like I’m in a vacuum and the room is spinning).

    I also have meltdowns when I’m exhausted by it and find it very hard to control my temper or regulate my responses as I normally would. I’ve hurt myself when that happens and get scared by the total loss of control, especially when it’s triggered by a seemingly little thing like my husband interrupting my bedtime routine.

    I manage at work by controlling my environment and limiting my exposure to people and input (before Covid, I would book meeting rooms to avoid seeing people and make sure I wasn’t disturbed by noise, lights or smells, and even then I’d still use headphones).

    When I’m feeling overwhelmed, I go into our downstairs coat cupboard and lie in the dark in a nest I’ve created (and which no one else knows about) 

    i don’t socialise, though I’ve learned enough scripts to do it if I have to. The anxiety doesn’t go away, though, and I often spend time hiding in the bathroom or just make excuses to leave.

    I guess I feel like I have a split personality and am so used to behaving a certain way in public that I honestly don’t know how to reveal who I really am inside and feel like I’ve been hiding. 

  • Find a reputable place where you can get assessed. Look on the NAS website for accredited and recommended places near you.

  • Same here ,my son was diagnosed 3 years ago ,  there is lot of things between us in common ,he looks like me , he is behaving like me , my speech delayed as well 

    I always say if I was in this country in my childhood they would know that  my speech delay and had autism 

    I would always say why I am different from others ,why I feel shy making friends , I don’t know how to start conversation 

    I used to eat only one veggie (potato ) when I was young 

    I always hide what I am and pretend that I am like others 

    I hope o could find someone who could help to know if I am autistic too 

    Thank you 

  • I work with people too so I had similar worries, but the energy it takes to maintain that type of work usually has an impact on other areas of my day. 

    If you have ever heard of spoon theory it's quite useful, but I liked a different version of it better based on pints of beer. 

    Your tipsy but not drunk limit may be 8 pints. 

    Some days you may be able to do 10 pints but be ill the next day. 

    You can likely not sustain too many days in a row of 8 pints without also getting ill. 

    Some days you definitely need 0 to recover. 

    It goes like that. Probably was more eloquently written in the article I read (I saw it on Linkedin) but it really helped me to understand my limitations and that we ALL have them, just some of us have a higher or lower limit than others.

  • Your post seems to concentrate on the positives - but how do you fail?   How does the autism present itself?    How do you deal with stress and anxiety?    When do you meltdown - what causes it?    Do you have any strange hobbies or subjects of interest?      How does your mask fail - and in what circumstances?      How do you feel in social situations?     Are the draining?    How is your time keeping?     Do you get stressed about appointments?      Always early?    Late?

  • This is a common worry because we, as women on the spectrum, usually mask more than men do. As a general rule, any professional worth their salt will understand this and will be looking beyond the outer shell. Are you looking to go through the NHS or private? If you decide on the private route, the Lorna Wing Centre are known for their knowledge of women on the spectrum. The NHS route is more of a lottery but more and more professionals are now  understanding the differences in how the sexes present (in general). Have you read Odd Girl Out by Laura James? She's a journalist who was diagnosed in her early 40's, and she masked well. Having a career and seemingly being capable means nothing. They'll dig deep, very deep.