Autism — Keria Fulton-Lees

Autism – The Curse of Awareness, the Foxhole Problem, and the Cost of Loneliness

Category • Autism • Kicker Autism — Keria Fulton-Lees • Title • Autism — The Curse of Awareness, the Foxhole Problem, and the Cost of Loneliness • Subtitle • Author • Keria Fulton-Lees • Published • 29 August 2019
= Artfully Autistic Medium Publication =-
Circular Words ©AraN Outer Logo by Author
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The Curse of Awareness

My awareness of my Autism has become a curse. I used to think: “If I can see it, I can fix it”. Yes, now I can see it, but can I fix it? Well, Autism itself can’t be fixed, per se; nor would we won’t to.

So, now what? Control or manage it? That’s where I’ve been for a long time…

What that means is I spent each and every moment of each and every day hyper-aware of my environment in a state of perpetual hyper-vigilant control, prevention, management, mitigation, elimination, retreat, or recovery from my environment.

The Foxhole Problem

The world of Autism is a Battlefield and we Autistics become so weary of the battle. Time after time of retreating to the nearest foxhole and time after time jumping back into battle, unprepared for and outgunned by the enemies of Autism — ADHD, Depression, Sensory Issues, Loneliness and Isolation, problems with Social Initiation, problems Social Conversations, General Problems with Social Skills. Problems with Change and Transitions, Insistence on Sameness, Narrow and unusually extended attention to these Interests, Unusual Prosody when speaking. Insistence on specific Routines and Rituals that cause them to suffer extreme distress if these Routines are disturbed, Problems with Speech, Meltdowns, Seizures, PTSD, Panic Attacks, severe Social and Generalized Anxiety, problems with Cognitive Empathy, problems with Executive Functioning, and many more depending on the individual. as Autism is a Spectrum Disorder..

But even in the foxhole, the bullets are still flying close by over your head, so you jump into a deeper and deeper foxhole until you are so far down that you can no longer hear or see the battle. You finally feel safe. It is quiet and cozy in your little foxhole world. And you wait. And you wait.

You wonder if you are strong enough to fight again. You think: “No, I’m still outgunned. I was sent into battle with not enough weapons. All my weapons are defensive. I was not given the offensive weapons to beat the enemy like the other soldiers were.”

You radio command and ask for better weapons. You are told you will never have those weapons. You ask why? You are told: “Because you are Autistic.”

Now, you realize that it would be better to wait longer. But, the war never ends, unless you choose to remove yourself from it. You’ve been closed off in this foxhole far too long, and it’s too small. You’re safe, but isolated. It’s too lonely in the foxhole.

Then you decide it’s better to be in the fight than spend another minute in this hellhole. You’re losing your mind in this foxhole. You must get out at all cost. You try to get out of the foxhole, but you can’t. Then a tidal wave of realization and horror washes over you. This foxhole is so deep you will never get out.

You were not given enough rations to stay in a foxhole this long like the other soldiers were. You radio command for help, for backup, a plan, strategy, a map, more rations, a ladder or anything that would help get you out of this foxhole. Each time you are told you will get nothing.

Command stops listening to your pleas. Then you radio just to hear the sound of your own voice. They have completely stopped talking to you at all. Finally, your radio goes dead. You know you will die in this foxhole, and you know you will die in this foxhole soon.

This foxhole is Autistic Shutdown – A total withdrawal from your environment. You’ve been in too many battles warding off Autistic enemies: The relentless Anxiety, Socialization Challenges, Isolation, Meltdown Triggers, Sudden and Unexpected change, Hyperfocus on Detail, Chained to Rituals and Routines, the Masking, the Different Reality you Experience, the Sensory Issues, and that’s just the tip of the sinking iceberg.

The bullets have ripped through to your soul. You can never really totally withdraw, but your world becomes smaller and smaller. That seems better at first – but only at first. Isolation and Loneliness are killers and you’ll die sooner because of it.

The Cost of Loneliness

The life expectancy for those of us with Mental Health Issues like Depression and Anxiety is significantly shorter than the general population. The same is true for Autism, and the suicide rate for those with Autism is also significantly higher too.

Loneliness increases the odds of a Premature Death by 26%.

(Compare that to Depression and Anxiety, which is associated with a comparable 21 percent increase in mortality.)

It is reported that Loneliness is more dangerous than smoking…

High degree of Loneliness precipitates:

  • Suicidal Ideation
  • Parasuicide
  • Alzheimer’s Disease
  • Other dementias
  • Adverse effects on the Immune System
  • Adverse effects on the Cardio-Vascular System
  • Higher levels of Stress Hormones and Inflammation, which in turn can increase the risk of Heart Disease, Arthritis, Type 2 Diabetes, Dementia and Suicide Attempts.
  • General decline in well-being which has an adverse effect on Physical Health, possibly through Immunologic Impairment, Neuro-endocrine changes, and even impairment at a cellular level

But For Some, this is NOT a problem

There is a correlation between Loneliness and Social Interaction, but not in everyone. It may be simplistic to suggest to people who are lonely that they should try to interact more with others.

“Social Isolation denotes few Social Connections or Interactions, whereas Loneliness involves the Subjective Perception of Isolation – the discrepancy between one’s desired and actual level of Social Connection.”, they wrote in the journal Heart.

¹”In other words, people can be Socially Insolated and not feel lonely; they simply prefer a more hermitic existence. Likewise, people can feel lonely even when surrounded by lots of people, especially if the relationships are not emotionally rewarding.

²“All of which raises the question of how loneliness and Social Isolation might be countered to help ward off Cognitive Decline and other Adverse Health Effects.”

³“Suggestions for Lonely or Socially Isolated Adults typically have included taking a class, getting a dog, doing volunteer work and joining a senior center.”

These again are ineffective, over simplistic, and demeaning suggestions for such a serious problem.

Program Solutions That Didn’t Work

⁴“A British program, called Befriending, involves one-on-one companionship by a volunteer who meets regularly with a Lonely person. While such programs may show modest improvement on measures of depression and anxiety, their long-term significance is unknown. In a study of 14 trials of befriending, the results showed:”

⁵“No significant benefit overall was found on measures of Depression, Quality of Life, Degree of Loneliness, Self-esteem and Well-being.”

“Another program called LISTEN, developed by Laurie Theeke at the School of Nursing at West Virginia University, is a form of CBT (Cognitive Behavioral Therapy) to counter loneliness. It entails five two-hour sessions of small groups of lonely people who explore what they want from relationships, their needs, thought patterns and behaviors.”

Unfortunately, researchers concluded that:

⁷“It is doubtful, however, that such an approach would be practical on a scale large enough to meet the need for cognitive restructuring of Lonely Adults nationwide.”

Average Life Expectancy and Autism

⁷ “Between 1987 and 2009 scientists from the Karolinska Institute looked at more than 27,000 people in Sweden diagnosed with Autism Spectrum Disorder (ASD).

This group was compared with a group of 2.6 million people without ASD.

During that time, less than 1 percent of the general population died. The mortality rate for the group with ASD was 2.5 percent.

What the researchers also discovered was that Average Life Expectancy for the general population was about 70 years old. In the ASD group, the average age was about 54.

Perhaps more startling, people with ASD that also had Cognitive Disabilities had an Average Life Expectancy just under 40 years old. (36 actually)”

Final Thoughts

Being Autistic myself, I find all of this alarming, disturbing, and self-defeating.

But does anyone care?

If you are Autistic, you definitely do, but does the American system of Mental and Physical Health Professionals, (typically Neurotypical themselves) care?

It seems not.

Autism support ends when you turn 18, and after that? It is literally nonexistent. You are on your own. Put bluntly, you are: “Sh*t out of luck”

When will help arrive for Autistic Adults?

Category • Autism • Kicker Autism — Keria Fulton-Lees • Title • Autism — The Curse of Awareness, the Foxhole Problem, and the Cost of Loneliness • Subtitle • Author • Keria Fulton-Lees • Published • 29 August 2019
= Artfully Autistic Medium Publication =-
Circular Words ©AraN Outer Logo by Author
Inner Image by fliegenwulf / shutterstock.com

Citations

[1..6] From The New York Times. The Surprising Effects of Loneliness on Health. Retrieved, August 29th, 2019, from https://www.nytimes.com/2017/12/11/well/mind/how-loneliness-affects-our-health.html

[7] From Healthline Media. Why People with Autism Die at a Much Younger Age. Retreived Auguast 29th, 2019, from https://www.healthline.com/health-news/why-people-with-autism-die-at-younger-age#1

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Keira Fulton-Lees

Keira Fulton-Lees

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Artfully Autistic Advocate for Autism, Writer, Editor, Artist, Musician, Owner of the Medium Publication: Artfully Autistic: https://medium.com/artfullyautistic