Group Anecdotes & Common Shared Experiences with Autism

Topics

While there's a lot of material out there about autism, we wanted to provide a basic, but broad idea of what many of us go through and what we typically talk about during support meetings. Feel free to dig deeper via the links throughout these sections. You can also find detailed and nuanced information about autism listed out in our Resources List section.

Executive Function impairment

When learning and dealing with autism, executive functions is a term to know: they are a broad group of cognitive skills generally related to both choosing and managing goals, as well as seeing how goals were met. They regulate our thoughts in ways like:

Many of our autistic members report having impairments with certain/some of these executive functions, or that it has impacted their quirks. 

Resistance to change & Special interests

We often discuss feeling outsized stress when facing change in routine or circumstances, such as a change in school/housing or having daily household routines be interrupted.

Meanwhile, it is common for group members to report feeling an irrational, irresistible sense of urgency / importance about whatever is in focus, which infamously thus makes any interruptions quite difficult to manage. 

The intense focus experienced by many of our group members provides a launching point to learn about a subject deeply and thoroughly, often resulting in special interests. Occasionally a few of us share the experience of getting so wrapped up in our own interests that we can even forget to check in much on others.

One theory of autism (developed by autistic people) that many of us have found helpful is Monotropism, which is:

"The tendency to focus more of one's attention resources on fewer things at any one time, compared to other people who may be polytropic. Things outside an attention tunnel may get missed and moving between attention tunnels can be difficult and take a lot of energy."

Sensory & Physical issues 

Many in our group experience overly increased or decreased sensitivity to physical sensations, and see this affect daily life, confidence, self-expression, and even cause overstimulation. What and how individuals experience these issues varies a lot, however.

Common increased sensitivity struggles include things like:

Examples of decreased sensitivity issues:

Some have found solace in sensory diets - in other words, leaning into what we find works and makes us less stressed out. This can look like choosing to wear certain, more comfortable clothes despite what else might be seen as "in fashion", or negotiating plans with others ahead of time to account for how certain environments potentially cause overwhelm. 

Stimming & masking

Stimming is doing something subconsciously and repetitively to feel better / self soothe, such as repeating movements, sounds/words, etc. and is actually something everyone does to a degree, but is often done more frequently / intensely by those who are autistic.

Common stims in our group:

Sadly, despite the fact that stimming is a protective response to reduce inner anxiety / discomfort and regulate intense emotion, some stims still are misunderstood at large by society, and are even overtly discouraged.  As such, many of our members have experienced stigmatization, depending on context, if they showed themselves freely.

Masking (or the suppression of stimming and other overt signs of autism), then, is a common (but harmful) solution that many of us were pushed to do in order to fit in at an early age. Unfortunately some at our meetings have even gotten so good at it that "unlearning" masking is their challenge. Especially many feminine and nonbinary people in our group have been skipped over in getting diagnosed with autism as children due to masking so convincingly.

Meltdowns

Autistic meltdowns are periods of intense, often uncontrollable emotions / behavior, which can take a long time and lots of rest to recover from. Meltdowns are characterized externally by strong emotional states (rage, anxiety, extreme sadness) that are interruptive, thought to be caused by stressful external situations. Managing so many inputs simultaneously and getting overwhelmed can sometimes cause this emotional explosion (sometimes implosion), even if we are normally quiet and introverted. Internal meltdowns are typically more of a shutdown situation, where it often becomes hard to speak and move.

Sometimes when a meltdown is brought on by emotional conflict with another person, some of us have reported physical lashing out. In employment or academic settings, meltdowns have been known in our group to have caused severe consequences when authority figures (especially if law enforcement) get involved without understanding the nuance of the issue.

Those of us who've been able to notice the signs of an incoming meltdown have sometimes handled it successfully by leaving the overstimulating environment and securing a safe space to wait and reset. For shutdown style meltdowns, it can sometimes help to use non-speaking ways of communication (ASL, hand signs, or texting). Friends may just need an explanation about what it's like to go through a shutdown and be shown how they can help you exit a situation.

Burnout

One of the common discussion points in our group is how allowing masking, meltdowns, etc. to escalate too much / too often can bring about burnout. Most of us agree that it is awful and is best prevented rather than being dealt with when burnout suddenly appears.

Complications members of our group have dealt with due to burnout:

We're always discovering new ways to address burnout, but a few tried and true methods include:

Social Skills & Jobs

Due to social skill deficits, it's common for members to experience hurt feelings in and even lose meaningful relationships and jobs. Many of us struggle with:

What some of us have learned is that sometimes managers / colleagues have been telegraphing their displeasure using facial expressions, tone, etc., which can be missed / misunderstood. When conflict arises, some in the group have shared that it can even sometimes be downright surprising and often leaves behind residual shame.

To reduce these conflicts, some have found it helpful to explain how others can accommodate autism. Here are some sample forms you can use if you need to approach your workplace. Additionally, any employee with an identified disability must be given reasonable accommodations in a large enough organization:

Under the Americans with Disabilities Act (ADA), companies with 15 or more employees cannot discriminate against them on the basis of disability. They must make "reasonable accommodations" that allow qualified employees to perform their jobs. Society for Human Resource Management (SHRM)

Workplace accommodations are a developing topic that seems to require flexibility for the circumstances of the workplace. However, there are some common areas in which accommodations are typically recognized:

Love & Friendship

Many of us are shy, nerdy, and don't always understand social hierarchies and norms. Some of us find it challenging to flirt, as well as recognize when someone else is flirting with us. 

Even while in a relationship, a common theme in the group is bewildering communication strife cropping up from unintentionally missing out on or misunderstanding signals that romantic partners are sending via body language, voice tone, etc.

Many of us have found it helpful to ask for various autism-related accommodations from our friends and partners. Here are a few ideas:

 

Hear from our members:

Sam's Story

I've always been weird.

When I was a child, I always got in trouble for being too loud in almost any situation. I was almost always in trouble at school -- I couldn't be bothered with homework after I discovered science fiction and fantasy. In adolescence, I was continually late for everything. I was given a nickname "Sam the late" by a sixth grade teacher, which stuck.

My father's family is completely obsessed with team sports -- football, golf, basketball, etc. Unlike any of them, I'm so clumsy I have a hard time getting through a doorway without injuring a body part. I gravitated to individual sports -- gymnastics, running, skiing. It took me half my adult life to understand why none of those "counted".

I had a really hard time making friends. Moving around a lot didn't help, but I couldn't understand why my younger brother was the center of attention in every grade, wherever we were, while I was the perpetual outcast, and never got along with anyone.

At one point, I decided in middle school that the problem was that I didn't know how to communicate with anybody, my eyes were always looking at the floor instead of looking at someone's face, I stammered, I was always going on and on about some weird theory or facts I had read about. I pretty much drove anybody who tried to talk to me away. I didn't understand why, other than thinking I must be scared of talking, or I didn't know how to have a conversation. So I decided I would take up theater to get over the fear of looking people in the eye. That worked to get me able to address a crowd of 10 or a hundred, but it didn't really get me that many more friends, because I still didn't understand how to talk to 1 person!

It took me 10 years to get through college -- more like about 10 colleges. I finally graduated with a degree in English Literature. By the time I finished I was probably doing graduate level work.

At the same time I was finishing college, I was working at a startup as tech support -- a job that spanned filling the fridge with sodas, to debugging printer drivers and soldering circuit boards. I built my first computer network from a box of parts I found in a closet, and somehow found a career.

I've now been a computer network engineer for about 30 years, and I always wondered why I wasn't able to climb the ladder into management. I wondered why I wasn't able to hold onto a decent relationship. I wondered why I was depressed, anxious and frustrated all the time.

After a lot of self-examination, I finally went and got myself a neurological test, the result of which was a diagnosis of a learning impairment related to executive function disorder. From there, after a lot of research, I wondered if, instead of a bunch of the incorrect diagnoses I'd been given by various members of the counseling & psychiatric professions, I might have Asperger's Syndrome. I took an online test and Bam! I hit all the indicators. From there, I found the Austin Adult Aspies Meetup Group and that's made a huge difference in my life.

Now I know there are others like me, I'm not alone, and we share a remarkable number of experiences.




 

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