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Chronic Loneliness Syndrome

by | Aug 25, 2020

It hit me like a ton of bricks! Of course! Autism and chronic loneliness go hand in hand, whether you are the individual with ASD or someone in their family!

That means that the loneliness I experience as a parent of 2 kids with ASD is a perfectly sensible response.

Where I’m at in Life

I am in a season of difficult change for my family of origin as we prepare to lose one of our elderly parents.

It’s no surprise that the resulting responsibility lands primarily on my shoulders, since I am the only sibling local to the house where I grew up. But being the responsible one comes naturally when you are neuro-typical in an ASD household. Like many other people with ASD in their families, many things seem to fall back onto the family member who does not have autism.

The other day I came home exhausted from visiting at the nursing home.

When my 24-year old Asperger son came in from work, he recognized my level of exhaustion, and asked me how I was doing. I commented that I was tired.

Tired of so many things – the stress of losing a parent, the long drive to visit with someone who can no longer communicate, COVID, cooking dinner, and navigating life in an attempt to help improve the sadness, difficulty and stress we are experiencing in our house.

My son said he was tired too. And he asked if I wanted to know what was making him so tired.

I said sure, not expecting him to produce a 100-item list that he had created for himself.

His list included being tired of not being appreciated at work, of his brother making noise in the middle of the night, of the dog who doesn’t want to reliably potty outside. He is tired of social situations, people who undo the work he does (he works in a Walgreens stocking shelves), tired of being patient with others, its too draining. Tired of being impatient with others, because that’s not the kind of person he wants to be. Tired of people complaining and the negativity. Tired of people complaining and not looking for an answer but just festering in their unhappiness – and the list went on from there.

He had some really good, inciteful points! I was impressed by both the depth and the contradictions his list detailed!

But then, one thing that he said really stuck with me …

He was tired of being lonely.

Understanding Loneliness

It really resonated with me for two reasons.

First, I have been feeling my own share of loneliness as I prepare my parent’s home of 62 years for sale, and say goodbye to my mother every time I leave her side. The loneliness that is a natural reaction at this juncture both triggers and compounds the bone-deep, autism-driven chronic loneliness.

Secondly, my other son had expressed to me, just a few days prior, how lonely he was feeling. Having autism and feeling lonely also seem to go hand-in-hand. It makes perfect sense that we all feel lonely when you consider that autism creates difficulties with emotional connection.

The real kicker to all of this is? … we are all feeling lonely even though there are 5 people living in my house, and numerous friends flowing through it every day. There is always someone around.

“Autism and loneliness are a real thing. Autism parenting and loneliness also is a real thing.”

That afternoon, when my older son mentioned the loneliness, initially I wondered if I was just a crappy parent who didn’t teach my kids how to have relationships.

Then I began to feel like we were a sorry lot – all of us in one state of difficulty or another.

Then I considered that maybe we were all just a bunch of losers!

And that’s when the realization hit home; I had an epiphany!

Of course, we are lonely! Our family has autism, and that is a social disability! Autism and loneliness are a real thing. Autism parenting and loneliness also is a real thing. Because our family has autism in some members, we struggle with all manner of social interactions and relationships!

Relationships, particularly satisfying ones, are hard to come by in a home where most of the members have autism.

And for some of us, this special brand of loneliness that comes with autism becomes a way of life.

What Makes Our Loneliness Different?

Let’s unpack that last statement, because I think there are a few things behind it that help to define the unique type of loneliness that family members of someone on the spectrum experience.

It’s a chronic loneliness, deep in your bones.

No amount of people around you can relieve it.

It comes from a lifetime of not feeling completely connected emotionally. It’s like living with an itch that never gets scratched.

One factor that may contribute to this is being raised by a parent on the autism spectrum. If a woman is raised by a father with ASD (whether it was ever diagnosed or not) she learns a particular brand of “normal” in relationships. One that she may carry into adulthood and may very well duplicate because of the sense of familiarity with the lack of emotional connection. Thus, attracting and choosing a mate who is also on the spectrum.

No big surprises there – I think that it is generally accepted that we learn “normal” from our family of origin.

Raising Kids with ASD

Another factor may be when you are raising kids with ASD.

There are 2 lines of thought about this.

First … if you are raising a child with ASD, you are participating in many therapies and other activities that demand much time and energy, and reduce both the energy reserves and the free time needed to drive and to manage your own social life.

When you simply don’t have the time or energy to pursue or nurture relationships, it contributes to that loneliness!

Second … many parents with a child on the spectrum also feel it is too difficult to engage in some social situations and simply opt out because of the difficulties they (and their kids) face in certain environments, the risk of meltdowns, the need for explanations, etc.

“Autism and chronic loneliness often go together.”

That creates a compounded level of autism parenting and loneliness.

One other factor may be that if you are a person who is married to someone on the spectrum, and you have kids on the spectrum, suddenly you may find yourself in the neurological minority as an individual whose brain is neuro-typical. That may mean that you become more like the other members of your family as a part of assimilating and belonging.

In addition, it wouldn’t be a stretch to also recognize that as a loving parent of a child with ASD, you desire to get into their world and that may also contribute to your adopting different norms and expectations.

Many of us live with a constant level of difficulty and turmoil that we become accustomed to, so like the fish in the water, we don’t even recognize our difficulties until some unique perspective makes them apparent to us.

The bottom line is that for those of us who have lived with ASD for generations in our families, have numerous influences which can cultivate the particular brand of deep-in-the-bone-loneliness that I became so aware of when my son and I compared notes on what made us tired!

It’s not pleasant.

But please know that if you’re experiencing it too … it is understandable!

Autism and chronic loneliness often go together.

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