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Living with Autism Spectrum Disorder

Not all people diagnosed with Autism Spectrum Disorder consider themselves disabled. While the Medical model of mental illness sees Autism as a neurocognitive defect, the Neurodivergence model of ASD views Autistic traits as signs of a difference in “brain wiring”.  (Marschall)

 

“The human brain is stuffed with approximately 100 billion neurons. Each one of these neurons can have 10,000 to 100,000 synaptic connections on it formed from other neurons. Every one of these countless connections must be attached precisely between the correct neurons in the brain to form functional circuits. The sheer number of wires, called axons, that are required to connect 100 billion neurons into functional circuits is imponderable.” (R. Douglas Fields Ph.D., The New Brain. Brain Wiring, Psychology Today, June 21, 2011, https://www.psychologytoday.com/us/blog/the-new-brain/201106/brain-wiring)

Wiring differences

Brain wiring refers to differences in Executive Functioning, meaning we have difficulty distinguishing between or filtering out all the sensory information constantly bombarding us. So, we usually end up focusing on the things we’re passionately interested in, or sensory irritations, rather than whatever we’re supposed to pay attention to. For example, instead of listening to the person talking to us, we’re focused on how irritating the label on our shirt is.

Autistic adults live with feelings of anxiety, depression, and stress, which take a toll on emotional health, coping, and resilience to daily stressors. Many irritants stem from social expectations, which often insist that Neurodivergent people conform to Neurotypical demands.

https://www.verywellhealth.com/top-10-facts-about-adult-autism-4140671

Despite stories you may have read online, children accurately diagnosed with autism become adults with autism. Certainly children with autism adapt and build skills that make autism less obvious. Teens with autism often learn enough social skills to be able to "pass" as Neurotypical in some situations. But a child with autism won't “outgrow autism” and become Neurotypical as an adult.

Variability in Adults With Autism

Not all adults with autism are alike. While many autistic children grow up and achieve the “Dream”—a job, a house, a family…a dog or cat and that white picket fence, too many remain severely challenged. It may surprise you but being labelled with "severe" autism is not necessarily the biggest obstacle to employment or happiness.

Higher-functioning individuals can be at a greater disadvantage because they may "pass" for neurotypical while trying to cope with severe anxiety, sensory dysfunction, and social/communication deficits.

In general, people with autism are honest and dependable; most are focused on their work and are rarely distracted by social activities or outside interests.

Grown-ups in today’s world are expected to independently manage time and money, run a home, find and hold a job, manage social interactions at work and in the community, find friends and romance, save for a rainy day, cook an omelet, and raise kids.

People with autism find many of these expectations impossible to fulfill. It may be hard to find and keep friends or partners and almost impossible to land and keep a job that requires a high level of social or planning skills.

Thoughts on an Aspie Life

Picture of little girl looking out a window.

Looking Out; Seeking ME;
Eyes-- The windows of my Soul.
Young girl looking out of a window. Old blank greeting card. Caption by the author.

BELOW: Excerpts From Quora Digest www.quora.com

WHAT IS IT LIKE FOR AN AUTISTIC PERSON TO WANT TO BE NEUROTYPICAL?

  • Autism is like standing outside and looking through the window. It looks like they are having fun. Parallel lives. You love having fun too. You want to join in, but something holds you back. A thousand butterflies. 🦋

  • YOU NEED OTHER PEOPLE TO AUTOMATICALLY INCLUDE YOU.

SOMEONE TO SHOW YOU HOW TO OPEN DOORS. You stand outside looking wistfully through the window. Someone notices you. “Are you coming in?"

  • EXCITEMENT? You try to tell yourself this is what excitement feels like. Stage fright? It feels like a very stressful sort of excitement. Butterflies in the tummy? 🦋Excitement not stress? A nameless internal tension is thruming.

  • You try to be brave. You haven’t got a ticket. You don’t know where you would sit. You don’t have anyone to sit with. You know you will want to have a drink, but you don’t know how you would choose. Everything is too difficult.

  • CATCH 22, contradictions. You want to run away to a safe place. But if you do that you cannot be part of the fun. Nail bitingly stressful. No shapes or sizes to the stress. Just a mind-numbing head-ache fog.

  • THE GESTALT SWITCH. You follow them in. You find that the door was open, and you didn’t need tickets. You start to be able to plan for next time. You plan some default decisions. Next time you chose soda and lime. You may be hit by sudden shyness as you notice for the first time that you have not dressed yourself for a party. It never entered your head before. Next time? You will plan what clothes and shoes to wear.

  • SELF AWARENESS. Your really-good comfortable walking shoes seem inappropriate. 🎩Unless you catch a relection of yourself, you have no thoughts about what you look like.🩰 Your only awareness of your clothes is whether you are too hot or too cold, or whether a label is chaffing your skin. You know about the interface between the your skin, and contact with the rest of the world, which is your clothes outwards. Your clothes are not you. You are more than skin deep.

  • YOU HAVE A DIFFERENT PERSPECTIVE. 👠👡You see some fashion victims tottering around on dangerously high heels, or tight trousers, or 💫bling tops with scratchy sequins on. How could they stand those clothes touching them? You are the opposite of a fashion victim. You might wear drab clothes that are comfortable, but you don’t see yourself. You see past yourself and see everyone else.

  • EVERYONE ELSE IS A PACKAGE DEAL. 🧩 You see them as a full set. A piece of a jigsaw puzzle. Height appearance, location, who they are with, the sounds and smells surrounding them.

  • If you meet them out of context🧩 you might not recognise them as the same person. They will recognise you every time. You learn to greet everyone in a friendly way. If they let on to you, you have time to trawl your autistic brain to remember who they are.

  • I NEED FRIENDLINESS. Good general vibes. I don’t want to be a drag, or a cling-on. You need other people, but other people don’t need you. You have no idea what question you are pondering about. It is nebulous, all part of the fog. Help please. Most of all, I want other people to take my hand and show me how to open those doors. If you don’t ask, you don’t get. I am not helpless. I have learned that I have a tongue in my head, I can ask. Nothing to lose. Only fear.

  • SENSORY OVERLOAD. You see everything in stark high relief. You want blinkers, or earplugs, or filtered spectacles so it is not overwhelming. Perversely, you might enjoy THE WHOLE

  • EXPERIENCE of showbusiness, or your specialist subject. You think in joined up sentences and moving panoramic pictures. You become animated. Lively attractive. Then you are in your element. In the zone.

You learn. Your mind is not set in stone. You can become happy in your own skin. You learn your limitations, and set your own boundaries. It makes sense all round. It is logical, good social manners, and when you feel comfortable enough. you can build your own social niche. I am a butterfly. I do not belong to one group or another.

After a long time people who know and like me make a space for me. I have that sense of belonging. Community. I am lucky that people sometimes adopt me, like I am a distant relation in an extended family.

You learn that 5 minutes is a long time to captivate an audience. You turn your shaggy dog stories into neat anecdotes. You do not want to be a bore.

I want an intermediary who understands all worlds. Some who can gently prompt me when I have no idea what I am neglecting. It has not entered my head. I have no concept of wanting to be different. I always ‘knew’ I was different. Most of my ‘difference’ was in a good way. I do love myself, but some of it is bravado.

  • BEMUSING. I did not understand why some apparently simple things were so emotionally draining and difficult for me. I figured out that we all had strengths and weaknesses, and that was part of the package deal.

  • I AM A CHILD OF THE UNIVERSE. I do not try to analysis or dissect life like a psychologist might. I have a holisitic perspective. Everything touches everything else. If one thing changes there is a knock-on effect. 🎲 You have to take your chances.

  • I am happy to be me. I am a good horse whisperer, but not so good at second-guessing people 🥰 It is not good to be alone for too long. I need people about me, just getting on with whatever they are doing.

How Aspies see Neurotypical People

First of all, many of my Autistic contacts believe Neurotypical people are boring, and are, in fact, the folks who lack empathy. Not us. I've inserted many words on this website in the hopes of raising awareness of Autism and related Spectrum Disorders. But I have not included a description or definition of a Neurotypical. 

Everybody's different and unique, right? I remember the professor who taught my undergraduate Abnormal Psychology class asking us, "What does normal mean?" While I can't recall my classmates' responses, the final consensus was that "there's no such thing as a normal person. 

Normal is the hump on a bell curve. It's an average of aggregate data. According to Morticia Addams from "The Addams Family", "Normal is an illusion. What is normal for the spider is chaos for the fly." 

Perhaps Neurotypical is a better term. In: Neurotypicals: What makes them tick, and how can autistic people better understand them, June 5, 2023,  by Matthew Rozsa, Staff Writer for Salon Magazine https://www.salon.com/2023/06/05/neurotypical-people-explainer/  "A neurotypical is a person who does not display autistic or other neurologically atypical behaviors. Traditionally, when commentary is made about autism, neurotypicals are the humorists, and neurodivergent people (those on the autism spectrum) are the targets... "This is most autistic people's experience: In jobs or in in group settings, they'll say their own thing and they don't know why everyone's offended at what they've said." Autistic people are so frequently misunderstood and excluded by neurotypicals that, both figuratively and literally, "autistic kids are like the one person in their class to not be invited to a birthday party, and then people wonder why the suicide rate for autistic people is so sky high."

Included in the Salon article is an excerpt from an email received by a person who had chosen to disclose their ASD: "We read your note with great surprise... We are so worried that people are putting thoughts in your mind. You are a wonderful person. Can tackle any problems head on. Then get them sorted before others have made the first phone call. There are many people we are sure would like to see you fail. But please don't go looking for problems that we don't believe are there." 

Note the words "problems that we don't believe are there." 

There are kind, accepting, compassionate NTs in this world. But more often, we Aspies get comments like, "You sure don't look autistic." I have been on the receiving end of these precise words. I've gotten a similar reaction from Family Physicians. 

So, I want to tell them: Open your eyes. Do some research. Talk to more than one Neurodivergent person. And please, Listen to us when we try to explain what life is like for us, given that we do walk among you.

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I laugh at you graphic
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