Getting Diagnosed as Adult Woman - Do Social Masks Hurt?

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Hi All - I recently had a question come to me from one of my readers about getting diagnosed as an adult. I can only share one perspective but would love to help her with more information so (with permission) I am posting her question below. Thank you in advance for any help you can give.

"I am in the middle of meeting with an Autism specialist to hopefully get my official diagnosis. Our first meeting lasted about 5 hours and included lots of questions and several tests. Before we started the exam she mentioned that she was putting down "generalized anxiety disorder" on the evaluation forms and might change it later. She also recommended a book to me about managing anxiety, but I really fear that she is barking up the wrong tree. I am 32 years old and am very good at blending in and worry that my chameleon act may be so good that I accidentally fooled my doctor. I meet with her for the diagnosis next week do you have any advice for how I should explain my "passing" abilities to her or do you think she knows? I am really worried my coping skills may land me with a misdiagnosis!"

Thank you all. Anything you share I will pass along.

With love,
Anna

I was diagnosed at 20 (I'm 22 now), and I was worried about this too. The mask you have created to help you get by in life has become so ingrained in your behaviour that you can't totally drop it, even when you want to. I was very open with my doctors and therapists but I was still worried they would misdiagnose me, especially as I have other psychological problems that often overshadow autism (depression, ED, anxiety, psychosis).

Giving specific examples can help if you find your general experience of life too hard to put into words. So, rather than say 'sometimes I get nervous in new situations', I gave an example of the first time I had to book a hair appointment for myself at 18 (my mother had always done it previously). I knew I had to phone the salon, but I couldn't do it because I didn't know what they would ask me, what I would say, etc., so I went on yahoo answers and asked people for a script, which I then used to help me book the appointment! It was an example that went beyond anxiety, into the realms of rigid thinking etc., and it helped me to get my perspective across.

I don't tell many people about my autism, but when I do I often worry that they will not believe me. Silly I know, but as a girl growing up with undiagnosed HFA I learnt to hide it very well. I get on really well with my mum, but when I told her I had got a diagnosis I could see she was not convinced. I think part of it was her not wanting to believe she could have missed how difficult I had found it growing up (she thinks she let me down, but diagnosis or not, she's always been the most supportive person ). I told a guy the other day (he wants to date me, I'm still not sure I'm up to it), and he accepted it; he said he could see I was a little different and as such it wasn't the earth-shattering revelation I had built it up to be.

My point is: sometimes people, especially those who don't know you very well, can catch a glimpse behind your neurotypical mask without you even knowing it. Strangers have always commented that I am 'interesting' or 'different', which is an odd thing to say when they don't know me, whereas close friends and family know my mask and my quirks so well that they are all indistinguishable parts of my character. As such, a stranger, especially a doctor looking for signs of autism, is likely picking up on more than you think (and your mask is probably not as effective as you believe; I know mine isn't! ).

Good luck with your diagnosis, I hope you get what you want, because you know your own experiences best and if you feel you are on the spectrum, then getting that confirmed will help you come to terms with yourself .

Social masks that a person may have felt pressure to develop in order to pass, fit in and get by in life, can have a harmful side even just in life, yes, I believe. But in diagnosis, the hope is that the diagnostician is skilled and experienced enough in late-diagnosis of, particularly, adult women, that part of their very process includes seeing through any masks the person has developed.

Unfortunately there are probably still clinicians not experienced enough in this to see past masks -- I'd be willing to bet there are missed diagnosis due to this, but to what extent nobody can know.

The best a person can do is to try to find a clinician whose experience is with adults and particularly adult females. Not all women even do masking, and that's a good thing as ultimately I don't think masking is entirely healthy. But many women on the spectrum seem to -- I'm one of them -- and it's important to make sure in the first place that your diagnostician has credentials that seem to show that he or she is experienced in seeing through older patients masks they've developed in the course of their lives in order to cope.

I relate very strongly racheypie666's experiences.

I have a deeply ingrained masking but I can't say that is not problematic, as I think it is.

I wondered about this before my diagnosis, but it really didn't become an issue.

In fact, I think I was diagnosed despite missing out lots of information!

For example, she asked me if I had any sensory issues regarding textures. I told her about them. Then she asked if I had issues surrounding touch, for example light touch or disliking the feeling of clothing. I don't, but I have the opposite where I constantly need to feel pressure! I didn't think to mention that because she specifically mentioned light touch.

She also asked me about whether I have any food issues. I said I didn't. My husband was with me and pointed out that I can't drink water. She marked that down. Again, I hadn't thought about it because she asked about food issues, not drink issues.

I think I actually came across even less autistic than I usually do (and I didn't feel like I usually seemed autistic), because I was telling her I DIDN'T have a lot of the symptoms she was asking about because the questions weren't worded quite 'right', and yet I still received the diagnosis and so I think there's more on the surface than we think there is!

These are all great comments! I will pass them along to her as I really did not know what to say.

People never believe that I am Autistic either - unless they know both me and adult Autism very.

I try to be a normal "Aspie" around people who accept me - funny noises, flappy hands,and all.

I didn't realize this for decades, because I was just doing it, but masking means you are at least partly focused on doing the masking. So, what are we unable to focus on because that's using at least some of our attention? For me, part of it seems to be having a good sense of my inner world and including it somehow in the conversation. I had some feelings when talking with others, but it's hard to explain, I was very used to only feeling some things when alone.

Since early in life, when I was developing the masking, it wasn't helpful or even safe sometimes to communicate many types of distress for various reasons, I really didn't develop skills for asking for support. It is hard to remember enough detail about incidents to tease this apart, I've been working on it, but my memory is good for systems, not sequences of incidents.

So, the mask kinda includes only a subset of a full set of human interaction for me. I didn't know what I didn't know how to talk about for quite a while. It's really isolating to have that kind of inner separate experience, even when I could "act normal" in many situations. The feelings were there though, and that inner part never had support.

Writing stuff down in a journal when alone, and sharing it with a therapist, really helped me start to connect the inner world a bit I think. Just starting though.