Asperger’s / autism and aging ~ I’m a little worried

(I’ll issue a Content Warning, in that this might be an anxiety/depression-inducing subject; we also have cats that we’re concerned about; please proceed with caution.)

I realize that, at age 39, I’m statically a little premature in worrying about this.  I’m barely halfway through the average life expectancy, after all.  At least, statistically speaking…

But my Aspie brain lives in the past and the future at the same time, so it follows naturally that this topic might cross my mind, and concern me.  In fact, as the years tick by like mile-markers on the side of the interstate, the issue of aging might elbow its way further into the spotlight (forefront).  My elderly years may be a long way off yet, but that doesn’t change the fact that they’ll be upon me before I know it.

That has me more than a little concerned.  My brain wants to know what that’s going to be like, what’s going to happen.  And it wants to know now.

My partner is nearly seven years older than I am, and we never had children.  I’m familiar with the sensical rebuttals to the tired old “bingo” we, the child-free by choice, have long tired of: “who will take care of you when you get older?”  (The answer is: the same people who take care of almost all older folks in this country; it’s not like the elderly typically live with their adult children much anymore.)

But who (exactly) are those caretakers?  And what do they know about autism and the various ways in which it can manifest?  What do they know about autism in adults?

Statistically, I will outlive my partner by [x] years, spending [y] years alone.  As unpleasant a thought as that is to follow to any sort of completion, it’s necessary to do so, for my own survival and wellbeing (well, as close to “wellbeing” as one can be, after losing their partner).  I have to imagine the worst case scenario and operate on the assumption that I’ll live out my last years as a widow.

What would become of me?  As it stands, he does the research, makes the phone calls, handles our accounts, stores all the passwords, and does all of the on-one’s-feet thinking.

If I suddenly found myself alone, where would that leave me?

Sure, we’ve taken all the basic steps.  We have our wills drawn up, and they’re current, as are our powers of attorney and all that.  He maintains the list of passwords on his non-password-protected computer, and he has indeed furnished me with a hard copy.

But I’ve leaned on him for so many years that I’m not used to making decisions on my own.  I’m not used to being responsible for running a household, even if it’s Population: 1.

I would almost certainly have to move into a senior community.  Luckily I’ve had the opportunity to watch my grandparents pave this path before me, so I’m not completely in the dark.  I might have to move back to where they live, though, or perhaps do my own legwork to find a similar facility here.

And then there’s the financial aspect: we live very thinly as it is, and haven’t been able to make that quantum leap into any kind of security, let alone comfort.  So would I even be able to consider such a place?

And if I couldn’t, then what?  Would I languish in my home like previous generations?  At least they typically had children, children who would make time to call and visit, children who would notice and step in to help if I found myself in some kind of trouble.  Children who could take me places.  Even my grandparents, in their senior home, rely heavily on my father’s two remaining brothers.  They act as surrogate advocates, guarding their best interests, with no strings attached or vested interest.

And if I could afford such a home, then what?

As of yet, at this point, I have no advocate, no whistleblower should I find myself in an abusive situation.  Who would keep tabs on me?  Who would walk beside me?  Who would stand up for me?

I see a potentially lonely road ahead.  The possibility of an agonizing situation is very real, and sometimes it frightens me.

Now let’s throw in my autistic status.  As if the aging process isn’t difficult enough, now let’s navigate those choppy waters through autistic parameters.

I need a specific environment; I thrive in compatible conditions and I wither in incompatible ones.  I’m concerned about what my environment might be like.  Would it be friendly to my sensory sensitivity?  Would I be comfortable?

Then there’s the food. I currently live with food reactions to gluten, a protein found in wheat and a few other grains.  It’s tough enough to scrutinize ingredient labels and make wise food choices “on the outside”, with every restaurant and “hipster” grocery store within my truck wheels’ reach; what’s it going to be like when my mobility and my options are severely restricted? 

And to complicate the situation, I don’t bleed out my bottom or get a tummy ache when I’m exposed to gluten; instead, it’s “all in my head” – my brain goes completely haywire.  A train derailing from the tracks.  I get severely depressed and extremely irritable.  I even experience a form of bipolar disorder.  My vision clouds over, little by little, and my nervous system becomes pathological.

In such a case, the tendency would likely be for the staff to think I’m being belligerent, obstinate, argumentative, angry, or even psychotic.  They might force me to be pumped full of meds when the real culprit is the food!  I’m also reactive to MSG; it makes my ears buzz more (tinnitus), and gives me a severe migraine headache.  It throws gasoline on the nervous system bonfire.  I become extremely anxious and hyper-excitable.  I become extremely sensitive to pain.

Then there’s the staff.  Would they be kind to me?  Would they hold their job positions for a long time, or would I constantly be trying to “break in” and get used to new people? 

Would they treat me with compassion?  Would they take me seriously?  Would they listen? 

Would they avoid me?  Would they dismiss me?  Would they write me off? 

Would they argue with me?  Would they restrain me?  Would they hurt me?

Would I flourish or languish?  Would it be cozy or cramped?  A dream or a nightmare?  Heaven or hell?

The truth is, I don’t know.  I’m anxious, yet scared, to find out.

“Anxious” doesn’t mean I’m looking forward to it; “anxious” means I want to nail it down, write a concrete plan, so that I know what to expect later, and so that I can plan, properly and sufficiently.  My autistic brain needs (plenty of) time for preparation, after all.

And yes, the transition, from living semi-independently (comparatively speaking), to living in a facility and having to relinquish a certain amount of autonomy.  Getting used to my new environment.  Getting used to the people.  Getting used to the rules and regulations.  Getting used to the policies and procedures.  Getting used to the schedule and forming a new routine.

All of this worries me, for so many reasons.

I can experience alexithymia.

I’m dependent upon my routine.

I have trust issues.

I need freedom.  I need control.  I would probably lose much of that.  I need my space.

I’m used to my current comforts.

I often get misinterpreted and misunderstood.

Sometimes I lose my words.

I don’t want to be on medication (it has usually caused problems for me).

I need my cats.  Oh god, what would become of them??  I would have to either be “between cat generations” or find a place where they’re allowed, or find a trusted friend or loved one to “foster” them for me and take me to visit them.  No, I definitely have to find a place that would accept my cats and me as a package deal, because I can’t live without cats.

The whole issue is so complicated a mental pretzel. 

It’s probably time to start doing some research and planning.  Maybe then, I won’t be so uncertain/unknown.  And if the uncertainty gives way to known options, then the anxiety goes away.  Knowledge is power, and all that.  Maybe comfort and even optimism will set in.  Maybe I can live even better in my later years than I am now.

But it’s up to my partner and me to make that happen–while we’re both still alive.  With the two of us working at it, I think we can do it.  We’re both relatively bright, imaginative, and resourceful people.  We think outside the box.  We blaze our own trail, laying down our own path.  We usually opt for the unconventional, and it serves us well.

It’s time to put that trailblazing spirit to use again.

(Image Credit: Mario Sanchez Nevado)

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