Being Autistic and Having Aging Parents
Let’s talk about it
No one seems to talk much about it.
Autism and aging parents.
My parents are both rock stars. My dad goes and works out at the gym every day. My mother is as social as ever and has never been happier. I am privileged to have wonderful parents. I realize many people, including autistic individuals, have had codependent or abusive relationships with their parents, and an article like this could smack of entitlement to some readers. I acknowledge this at the outset.
I am an only child, a bit of a blessing and a curse. While I have lived chiefly independently for much of my adult life, I have support needs — technically, you cannot be autistic if you do not have support needs.
Saying autistics have support needs is a bit loaded, isn’t it? After all, every one of us has the same needs which must be met. At the very least, we all need homeostasis, security, and community. If some of us get lucky or are considered valuable in the consumer culture of capitalism’s hierarchy, we can self-actualize our talents — perhaps at a psychological and physiological cost to ourselves. What will it profit a man if he self-actualizes yet burns out? Fewer and fewer people, neurotypical or otherwise, find it easy to self-actualize these days unless it is in a monastery where all needs are provided for, including the rent.
But I digress.
(Yet autistic people legitimately require support because the ins and outs of life do not come naturally to us. We need advocates at times when others could go solo.)
As our star dims with each passing year, we all inevitably experience various life changes to our body and cognition. I am already beginning to notice these changes myself in my mid-40s. Consequently, my parents have not surprisingly experienced a few predictable changes as they have aged, too.
Without siblings, my parents have been my prominent support people. They have been my Rock of Gibraltar. They have helped co-regulate me through many meltdowns and shutdowns. They have steadied my ship through incredibly rough waters and helped me make crucial decisions while respecting my autonomy. They have been there for me when, at times, I felt utterly abandoned.
As a child, my dad was larger than life in my mind’s eye. He was Superman. He still is.
It is scary for me to think about them aging. It is much easier to think of my own death than the death of my parents. This is not a passive suicidal statement, so please do not take it that way. It simply conceptually takes less effort to imagine for me.
The literature says that people like me are less likely to understand grief or dying because of our alexithymia, while other studies feel the need to point out “problematic behaviors” that come with the grieving autistic people experience. (Puh-lease!) Other sources point out grief can be experienced differently among autistic people due to how we process information. I do not doubt this is true. Which is why I think I am experiencing anticipatory grief much sooner than most people would. I am trying to process now what I won’t be able to process when the time comes. I’ve gone through the Kubler-Ross cycles of grief before anything has actually happened. Having a close friend die of cancer earlier in my life has had a way of priming me for this future rite of passage.
Anticipatory grief
Anticipatory grief is actually not unusual, but mine may be starting much sooner than it does for most people. According to Dr. Judy Ho, who quotes fellow Doctor Allison Werner-Lin:
Anticipatory grief, also referred to as anticipatory loss or preparatory grief, is the distress a person may feel in the days, months or even years before the death of a loved one or other impending loss. “It’s the experience of knowing that a change is coming, and starting to experience bereavement in the face of that,” says Allison Werner-Lin, Ph.D., a licensed clinical social worker and associate professor at the University of Pennsylvania’s School of Social Policy and Practice in Philadelphia. Many of us have experienced anticipatory grief without realizing there’s a name for it, she adds.
Usually, when I write an article about a topic, I acquaint myself with the literature, but it has seemingly very little to say about the experience of anticipatory grief and autism. So, I will have to resort to personal experience.
As I encountered middle age while my dad was in the later stages of life, we undertook various role reversals. When we go on a trip, I have to guide us everywhere— and I enjoy doing so. But sometimes, he can be a little forgetful, triggering a fearful reaction in me. Inside, I am saying to myself…”Focus! Don’t lose concentration now! Be the Superman I always knew you as. I want you always to be here.” This is magical and wishful thinking. And it’s not fair to him.
What’s happening is that I don’t want to lose a person I love so much who also happens to be my support person. And I am hypervigilant of the signs of it happening. Fortunately, my parents take outstanding care of themselves, but that does not stop me from worrying — mainly when a cognitive issue arises. Granted, as stated above, it is not fair of me to hold my dad to the standard that he be like he was when he was fifty. And he isn’t like he was. Instead, he and my mother are both more loving, kind, and supportive than they were thirty or forty years ago, and they were all those things then. But they are aging. And just as it is true in politics, you cannot reframe or deflect away the issue of aging. It is what it is.
A cognitive reframe
Earlier, I spoke of how I envision my own end more easily than my parents. This may be a crisis of imagination on my part and one where I am willing to intervene on my behalf. Autistic people tend to be a little rigid, and here, my brain needs to engage in some creative problem-solving and neuroplasticity.
There is a lot I have done in life that has not directly involved my parents. I have advanced degrees and have written published books. I have spoken at over a hundred conferences and served on multiple boards of directors. I have taught tennis for over fifteen years in what feels like a prior life. I have co-written peer-reviewed articles and consulted with lawyers and police on issues surrounding autism and the criminal justice system. I have gone to universities to train the trainers. I have done paralegal work for autism defendants. Yes, my parents were there, but I did all these things!
This has shown me that I can be resourceful like Templeton the Rat and learn to ask for help. Like many autistics, asking for help feels like we are being put in a one-down position where someone might judge us for not knowing how to do something. Many of us don’t like to do it, especially if we have a PDA profile. But just as Buddhists routinely ask the Buddha for guidance or Christians may try to commune with God in their hearts, I, too, will find ways to obtain the recommendations and counsel I need.
And I will take care of my parents from now until the end. We spend a lot of time together, and I savor their company. I will not let my anticipatory grief sour my relationship with them.
I believe in you.
I write this article because I know I must not be alone regarding this issue. Some autistic people are married; some have helpful siblings, but some have no family. When the time comes to face this world as an orphan, I will miss the love and support of my parents. But my anticipatory grief is serving as a way to mourn in advance so I will be able to move forward when the time comes. I will weep and mourn when my parents die, absolutely. It will be surreal and incomprehensible to me beyond what words can describe. But I am determined to be resilient and resourceful when this horrible moment in time has to occur.
To those facing a similar situation now or in the future, I see and hear you. Your thoughts, feelings, and anticipatory grief you may be experiencing are entirely valid, whether it’s for a sibling, spouse, or parent. Feel your feelings. But also know that you have probably been resourceful to get this far in life by overcoming many obstacles. And if you have, then I believe in your resilience. You are a gutsy human being, and you deserve to know it!
By coming this far in life, you have proven that you can go the distance.
