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Autism: considering a family wake, funeral

August 27, 2015

I thought long and hard about attending Goostie’s funeral before concluding there was no way for me to show up and not upstage my uncle’s death.

{ Insert Complicated Logistical Nightmare of getting myself to SmallSuburb, IL from northern Maryland, and back. }

{ Dealing with my parents in any capacity would require a hoarder’s House of Spoons, packed to the ceilings. I… don’t have that. }

Spouse wouldn’t be with me, so I’m already at a huge disadvantage.

Will I be able to sleep at all? (Not likely.) Will the food make me sick? (Probably.) Will August in Chicagoland be uncomfortably hot? (Of course.) Am I going to be stinky-sweating from the stress? (Definitely.)

What if what people wear these days to Midwestern Catholic wakes and funerals is different than the clothes I brought? (Should I have worn nylons? Ugh.) My hair style is awful right now — does it at least not look disheveled? Do I appear cis femme enough?

Will anyone recognize me?

Will anyone want to talk to me?

Who will speak to me warmly about my parents, believing that I’ve either reconciled with them in this sad time, or not even realizing that we’ve been estranged since 2005?

How many times will I have to explain I’ve changed my first name? Will people tell me what a pretty name OldName is? Will they call me an old or new nickname that I don’t want? Will they argue with me?

Should I take Communion so it doesn’t cause comment (and apologize to God in my mind — wouldn’t be the first time!), even though I haven’t been Catholic since 1986? Do I even remember when to stand and sit and what to say during a Catholic Mass? (Last one I attended was a family wedding in 2008.)

Are many/most people still conservative and/or Republicans? I haven’t been following Illinois politics (usually a shitshow of corruption), but what comments might be safe to make about … local whatever?

Am I talking too loud? Too much? What I know about family members’ lives is generally 30 years’ out of date, but if I ask them questions (especially if I’m genuinely interested!), it almost always goes badly.

How much will the physical environment bother me? Fluorescent lights flickering, machinery humming, other ambient noises (some of which no one else will hear), noxious flowers and perfumes/colognes that will give me a headache, terrible coffee, ugly furniture that I’ll keep bumping into, colors depressing my mood further, everyone’s crying, will people try to hug me when I don’t want to, no dark and quiet room (with potted plants) to retreat to (parking lot with shade trees nearby in a pinch), etc., etc.

Besides all that, small talk sucks! Not just because autistic people often don’t know what to say, or how to respond in a way other people will accept as appropriate. But also because of our physiological difficulties with understanding speech in realtime, especially when we’re in noisy places — I lip-read all the time, and I still have to ask people (even Spouse!) to repeat themselves every day. (Talking on the phone is the worst.) Often I don’t bother: I just nod my head, try to respond similarly to whichever other people are around, and hope for the best. Oh, and holding eye contact is physically painful; if I manage to do it, I’m probably not catching most of what’s being said.

If I can find something to stim with (to soothe my spikes of stress), will people freak out?

What can I say about my job situation that isn’t going to be super awkward?

Unlikely though it is, if anyone asks for my contact information, what do I tell them? My parents and siblings don’t have that (by design). What is safe to share? (Especially when I’ll likely never hear from them again anyway.)

If someone says something triggering to me — let’s face it, very likely — I’ll already be so jangled with nerves that I won’t be able to stave off a meltdown [an involuntary physiological response to my senses being completely overloaded]. Not only are meltdowns wrenching to experience, but people trying to help can drastically worsen things. (My prior recovery times: hours, days, In a few cases, weeks.)

Maybe I sound like the most self-absorbed person in the world — what about my widowed aunt? My father? My cousins? Everyone else? Well, I’m thinking of them too! Nobody would want to read a list of every variable I’m juggling at all times — my executive function deficits mean that all of them feel equally primary. Concurrently, I’m exquisitely aware that everyone around me has (differing) opinions about how I should be behaving.

Too, I have my own value system, and it… doesn’t seem to overlap with the value systems of my family members. So even when I’m acting honorably and respectfully by my own carefully-thought-out standards, I’m probably pissing people off. Definitely some of them are going to let me know that. Probably in a way that pulls rank, too.

When/if a “scene” occurs, I will be scapegoated for it, even though I will actually have done my best to prevent it from happening.

There’s literally no way for me to ‘get it right’, which is why I’ve had meltdowns as often as I have.

And also why I… don’t attend family gatherings, for the most part.

= = =

The thing is, I’m pretty certain that there are autistic people on both sides of my family. There should be some allowable way(s) for me to be someone I recognize as myself and not be a pariah.

But I’ve never discovered them.

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