Before I begin … I can only speak from my own experience; from a standpoint of being an adult; of having language, speech, communication skills, and a considerable life-time of getting on with people. Well, that’s how others see me, and when I began to tell those closest to me about my diagnosis 99% said they’d never noticed anything that would even hint at it. That’s 99% of a half-dozen people as I’ve never been anyway close to 100 friends or acquaintances!
As for my husband, it’s been a very steep learning curve for him. For the first few months after diagnosis my shutdowns / meltdowns would still take him completely unawares and the following conversations about them would often end with him saying “I forget that you have a serious condition – you always seem so normal”.
How do I see myself? How do I feel about the world? Being within this world?
It’s tough. Not just tough being out there. Tough being inside me.
Yes, I have language. I love language: the rules of it, the spelling, grammar, idiosyncrasies. But I don’t always follow the spoken language. I take things literally.
Yes, I have speech. And boy can I talk: but I don’t know when to just shut up, when what I say is inappropriate, if what I say is too soft or too loud.
Yes, I have communication skills. I’ve given talks on my Personality Disorder and on my Sensory Integration Dysfunction: but I don’t find it easy to do ‘small talk’, to engage with people in ‘low-level’ chat; I’m only comfortable with a good discussion about things I’m interested in.
Yes, I get on with people. But it tends to be superficial. I can be what people expect from me; I mirror them in order to learn; I wear a mask that is adapted for them; and then I’m in for social overload when it’s over. This may be shutdown, or full-blown meltdown depending on how draining or stressful it’s been.
To return to my starting point, how might you behave?
Ask them
When I’m in shutdown I need to be left in my own headspace for 10-15 minutes, maybe upwards of an hour. Sometimes I take myself to bed and sleep. However long I need for my head to re-boot my husband now knows to leave me. Then I’ll need the physical assurance of a hug that I’m back in a good place. That process didn’t evolve overnight. We talked about it, discussed it, tried it. And now we have something that works. No questions. No discussion. No post-mortem.
When we are out and I’m obviously struggling, I’m able to ask that we move on or go elsewhere. Previously that would have been met with ‘Why?’ ‘What’s wrong?’. Now it is understood that I need do. End of.
The most difficult situation is one that does need to addressed before that situation arises. What to tell people who may visit, ones who are likely not be their friends and we’ve had this scenario recently when an old family friend of my husband visited. Within a couple of months of my diagnosis my husband asked what I felt about telling people. Well, I’m absolutely fine with it. It’s certainly not anything I’m ashamed of.
Almost as important as your asking, is their knowing that you care.
I know that when I’m asked ‘Do you have your headphones?’ when going out that it is asked from a point of caring that I’m OK. My walking stick goes in the car.
If you’ve read my blog on stimming you’ll know that Norm is my constant companion. If you haven’t, well he’s a hedgehog (not a real one but I don’t tell him that) that I’ve had for 24 years. He spends most of the day by my armchair in the living room, which happens to be the room we ‘live’ in – armchairs, dining table, computers. When we watch TV my husband takes him into the sitting room; when we go to bed, Norm comes with us. He travels with me, he goes to hospital with me. I don’t have to ask.
I hope that these few pointers have set you thinking. About them. About you.
If you’d like to ask me about this … I can’t guarantee anything above and beyond my own experience … but I’m happy to try.
Ask. Care. Ask. Ask. Care. Ask.
marilyn unmasked 