Passing for Normal is Exhausting

For simplicity sake I use ASD for autistics and NT for everyone else.

 I have been encouraged and inspired to write about autism –maybe even a book but honestly, there has been an outpouring of writing about adult with Autism since I was diagnosed 15 years ago, I don’t think I have anything new or provocative to add.     

The situation for the disabled hasn’t changed much despite the ADA. Historically, society has a slim understanding and tolerance of the disabled, even education is half hearted at best.

Films about autistic characters are just “inspiration porn for the NT” as one ASD commented on line, so they can feel good about how well we overcome adversity while doing absolutely nothing to challenge adversity in the first place.

The ASD spends a lot of time trying to be normal in order to fit in but by being as close to normal as possible their disability is viewed as an exaggeration “ You seem normal enough, why are you upset about something trivial?” The lapses in social behavior are written off as laziness, scatterbrained, deliberately stubborn rather than a limitation caused by the disability. Also acting normal takes a lot of energy.

Here are some good comments posted on Redditby ASD’s about the difficulty and cost of being “high functioning”.

“When you function just enough to mask just enough, it creates its own problems. Other people, people can still tell there's something weird or "off. But unless you're acting like Rainman or nonverbal, they don't ever think of autism. You figure out how to mask and function enough to be part of the machine, but you still don't fit properly. There's still a sense of utter isolation and disconnection. And sooner or later something will give, via a meltdown or social faux pas. “

“. . . People are unconvinced if you tell them you're autistic, or "on the spectrum", however you put it to them, because you've so far passed as "almost normal". . . One is met with a very suspect, unconvinced "What? You? Autistic?" response. Since it's still in the process of being understood scientifically, regular folk have no clue, no understanding, no empathy. Even no belief that you deal with autism.”

Many ASD’s comment that being intelligent is seen by NT’s as a way out of the disability. Like we can think a way to being normal. If you appear normal enough you don’t get support because it looks like you’re coping just fine but it’s exhausting

“When I was seen as simply highly intelligent but very shy and disorganized, I received sympathy and compassion. When I informed others I am in fact Autistic, they accused me of using the diagnosis as an excuse for my behavior, rather than an explanation.”

Another area of failure at trying to pass is not believed. I have heard countless stories and encounter the problem myself that the ASD is often accused of lying. When most people lie they will avert their gaze, this subtle cue alerts the accuser that someone is lying, but with the ASD, the aversion for eye contact undermines their credibility no matter how much they plead with the NT leaving them demoralized. Perhaps out of need to placate the NT who are already suspicious, ASD’s will go out of their way to be as truthful as possible and still fail.

The Autism Files: Empathy Strikes Back

(Disclamer. Fancy terms, scientists love them. Labeling and defining everything gives it a special distinction. Remember neurotic? Very popular in the 70's and 80's until it was apparent everyone had a hang up and it became passé. Same with co-dependent and enabling, we're all doing that in one way or another.

         Neurology has created a whole nomenclature (that's a fancy word for fancy words on a particular subject) when it comes to mental disorders, especially autism.

         Anyone who isn't autistic is alistic except we already have a word for that: normal, oh excuse me neurotypical, but the opposite of neurotypical is not autistic, it's neurodivergent. Can we make things more confusing? Certainly, I'm a woman or rather a cisgender female. Whatever. For simplicity sake I use ASD for autistics and NT for everyone else. Deal with it.)

         ASD's have long been accused of lacking empathy, being aloof, indifferent, even sociopathic. No, ASD's  are often overwhelmed with feeling and shut down so expressing emotions is difficult which the NT misinterprets. What we have here is a failure to communicate.

         It's often the ASD's work to put in the effort to be understood while the NT does not, so the ASD is blamed for the confusion because the directions or the right reaction are obvious to the NT. Now the ASD is stressed because they don't want to upset anyone and doubt their ability to grasp the situation. From the NT's point of view their request seems simple and-- what is wrong with this person?

         It turns out both sides have what is called ‘The double empathy problem' a theory by Dr. Damian Milton that emerged in the early 2010s many autistic people agreed with, but until now hasn’t been shown by science.

         “This impacts how autistic people are viewed,” said Rachel Cheang autistic researcher at Brunel University London’s Centre for Cognitive Neuroscience.

" If they're feeling happy about something and nobody's recognizing that, people won't celebrate the joy with them. And if they're feeling sad about something, it’s not recognized that person might be upset or sad about something. So, then they'll be lacking support or commiseration from people around them.”

         File under duh. No wonder ASD's are a higher risk of depression and suicide. Instead of reacting with frustration or anger, try curiosity and compassion to figure what the hell is going on instead of making assumptions. Everyone benefits.

 

This Week on the Internet

 

Let's start with a Letters Live performance where Edie Falco tells it like it is.

 

Think Homelessness is unsolvable? Think again and thankFinland. What are we waiting for, let's do this too.

 

 I found a thread on Reddit where people recalled the stupid things someone said to them:

I'm sure I've heard something more dumb but someone once said to me, "Snakes aren't animals. They're lizards." When I told him that snakes and lizards are both reptiles and reptiles are animals he said, "Clearly you haven't done your research."

I have a degree in biology.

 

My aunt (who was pushing 40) wondered if she needed to worry about prostate cancer, since her grandfather had it. This is the same aunt who insisted that the Dutch are from Denmark. When I told her the Dutch come from the Netherlands. She was like "no, sweetie. Those are Neanderthals!"

 

"Okay well if the earth is round, then how come Australians don't fall of?" Then she looked at me with a sufficient smirk like she just debunked centuries of science.

 

And my autism entry of the week is a delightful lecture by one of the top experts on ASD  Dr.Tony Attwood.

 

Enjoy.

 

 

 

 

 

 

 

 

 

The Autistic Adult Adrift

                  Let's be real, being an adult is not easy, for the autistic more so.

         A few years ago I was on a discussion panel about autistic adult transitioning to work and during Q&A, a mother asked about resources for her adult son. I'll never forget the devastated look on her face when informed there were none.

         I taught a class for adult with autism and the students were all mothers looking for help with their adult children (side bar, we need a better term then adult children, carry on).

         More research needs to be done on autism in midlife because I've yet to see any studies on the effect of a late diagnosis of autism. Until a decade or so ago, there were no autistic voices contributing to the discussion.

          As recent as 2018 there was a belief in a "narrow window of brain plasticity" in children with ASD  so the need for early education and intervention was dire.

         When we come of age it's assumed  we will figure out how to be an adult. Our toolbox of learning, and understanding the world is complete after years of education right?

         Not everyone has the same ability to pick up on what they need to navigate the adult world. This is especially true of autistics who are socially deficient. There are few if any resources as adults, making it harder for them to fit in. Once they discover their disability, it may take years to readjust behavior and undo the damage to their sense of self from years of rejection and failure while dealing with daily challenges.

          There are some who do counsel adult with Autism but they can be hard to find. Hard to find, hard to do, hard to learn are mantras I hear frequently from autistics. It's harder without proper skill to navigate relationships, work, child rearing or where the hell did I put my keys this time-without getting exhausted.

         There is counseling for families in crisis, recovering addicts and other traumas psychology discovers. Help is available for disabled children, but there is no one stop place for the poor autistic shoved out the door once they reach adulthood.

         That needs to change. Unfortunately society has a poor view of the disabled. If they can't keep up academically with normal students, they're stupid. If they require special needs like a ramp or a signing interpreter, they're a bother. Alternately they are viewed as heroic like some Hallmark movie when they overcome their disability to succeed. Cue the sappy music.

         They didn't overcome their disability, they overcame the obstacles of life with lots of hard effort. The undiagnosed autistic suffers. Even after discovery, how much understanding do they get from family, friends or the medical profession?          The expert who diagnosed me offered no information on support or guidance. We have to readjust to a new reality and what to do next, where to seek help. For the most part, the autistic is left to figure it out on their own. Remember we're adults so we should know how to navigate thorough a bureaucratic maze.         

         All of the assistance listed here can be helpful IF they are qualified to make an assessment, check their credentials-seriously.

          A Psychiatrist, psychologist or social worker can offer an assessment. Medication can't alleviate ASD but can help with depression and anxiety. Cognitive behavioral therapy- a fancy term for talking it out, make sure the counselor has experience with ASD. Vocational rehabilitation can evaluate strengths and needs but that's about it. Support groups offer peer only support and kinship.

         When you break an arm, you know to go to an ER and there's someone to help  you. Where can a newly diagnosed adult with a neurological disability get help?

 

Autism Adaptation: Q&A time

 

          

Why is it so hard for adults with ASD to cope?

         There are many resources for children with ASD but few for adults. It expected that being an adult means having the emotional /mental skills to cope with real world responsibilities. Society puts a high value on social manners as a sign of maturity, many adults with ASD lack these and may exhibit childlike responses to stress and stimuli due to underdeveloped social learning. The default reaction is often parental scolding which reminds the autistic they erred thus causing more stress.        

         Physical disabilities are singular and obvious when one is in a wheelchair, missing a limb or have a limb and easy to adjust for with a ramp or other devices.

         Neurological disabilities are invisible so the person is treated as normal until they encounter a barrier with people or the environment. Complicating matters is the  enormous effect to keep ones disability hidden to avoid rejection or embarrassment. When it becomes apparent, the adjustment is more complex.

Contrary to stereotype, one doesn't overcome a disability but the barriers of the normal world whether physical or mental.

        

Why do autistics prefer to be alone?

         "The truth is, we'd prefer to be with other people but because things never ever go right, we end up getting used to being alone." Naoki Hgashida " The Reason I Jump."

         The general misconception is that when someone is alone they prefer it. If they didn't-goes the logic, they would seek out company. Seeing a young man or woman sitting by themself, with odd quirks and seemingly uninterested in communicating makes it easy to ignore them. That introversion can make their acute loneliness worse. A girl may be labeled as shy or introverted without too much investigation.

          Well meaning people might advise joining a social club, volunteer or "just get out and socialize". It's not that simple when the ability to interact is stunted.  Like telling someone with a defective leg to take up dancing or go for a stroll. Possible but hard. ASD is subtle and hard to spot. What may be obvious to others may not be so to the ASD.  Even with the brains ability to adapt, it is exceptionally hard for the Autistic.

         Females learn how to mask the symptoms in order to gain acceptance and normalcy. Unfortunately successful masking makes the condition harder to spot or to accept the diagnosis. 

         Normalization (social skills) is learning a language by rote, but not understanding its nuances. For whatever reasons, the ASD has difficulty retaining or remembering certain social skills.

          This can make finding job difficult. Autistics are generally not "team players"  and therefore viewed as a poor fit by potential employers. Because of advocacy, more businesses are discovering the specialized skills ASD's can bring to a job.

The limits of the disabled is not necessarily a disadvantage as the tech industry is now recognizing. Autistics can see things that group think might miss.

         "Autism is a profound disability that requires accommodation from society... Autism changes a lot over the course of a lifetime and functioning levels can change from hour to hour." says Steve Silberman, author of Neurotribes.

         Brain plasicity allows for continual adaption but for the disabled that change may be long and slow.