Tag: behavior

The following is written by my beautiful daughter Kai Bibeau, author of The Autistic Ambassador blog https://theautisticambassador.com/2021/09/30/example-post-3/. Not only is she physically beautiful, but she has a beautiful mind and a beautiful soul. Kai is my fifth child, the baby of the family. About the 25^th paragraph down in this post, Kai refers to the time when she was young and in retrospect says she felt she was “overly” attached to me. I remember this time because she wanted to be held a lot, which I treasured. She and I decided together that she would wait one more year before she entered kindergarten.

For her nursery school education, I had organized with three other parents who had nursery school aged children, who wanted to take part in our own nursery school experience. I had asked a nursery school teacher what the children needed to know before going into kindergarten. I was told nursery school children need to know their colors and numbers, be able to use scissors, and be able to take directions from someone who was not their parent. Together we held our own nursery school, each of us taking one-week shifts. We toured the Fire and Police Departments, went to museums, learned how to tie-dye t-shirts, plant seeds, and an entire year’s worth of other educational activities.

Now that she is a grown adult with her own life, I see now what I did not see when she was a child, that she not only has Autism, but is able to help so many people, Autistic, and non-Autistic alike. I don’t know if she fully realizes the impact of her educational posts about Autism, so I am sharing another of her posts here.

Both my husband and I understand Autistic people to be very gifted individuals, even perhaps a step up in our evolution, highly perceptive, introspective, aware, and sensitive, among other valuable traits missing in today’s society. It’s a matter of retraining our brains to better understand Autism and the people who are born with these traits. It is not our labeling of people that needs to improve. It is our empathetic and compassionate understanding of Autism and how it affects all of us, Autistic and non-Autistic alike, and how we interact with each other with dignity and magnanimity of spirit.

Kai is the author of the following words:

Something occurred to me the other day.

There’s this “war” that’s raging between “autism moms/dads” (usually non-autistic parents of autistic children) and actually autistic adults.

It basically goes like this:

Autistic adults like me make content educating people about what it’s really like to be autistic, we speak out against the barbaric “therapies” that autistic children have to endure (as many of us were once those autistic children having to also endure it), and suggesting ways that neurodivergence can be better understood and accommodated. “Autism moms” and “autism dads” then respond by saying, “you’re nothing like my ‘severely’ autistic son, therefore you can’t speak for him,” etc.

This is really strange for several reasons:

1. Often, these exchanges are happening on the internet, through written word exchanges. The “autism mom” or “autism dad” assumes that if an autistic adult is able to write coherently, they must be more “advanced” than their child who they view as being “less advanced.”

2. It’s bizarre to compare a grown adult to a child.

3. It’s bizarre to assume, from someone’s written communication, what they’re functioning level is.

4. Autistic adults are not just advocating for themselves, we are advocating for all autistic people, from those with high support needs to those with lower support needs who are able to live more independently. We are advocating for systemic changes that harm no one and help everyone throughout the entire spectrum of the autistic neurotype. We’re trying to be a tide that raises all boats.

On points number one and two, assuming that those who can type and communicate coherently in the written word are “more advanced” than they perceive their autistic child to be, there’s just so much wrong with an assumption like that.

First, I have met SEVERAL autistic people online through the years who are extremely intelligent and articulate in their written communications who can’t and do not speak orally in the regular course of their day, who use sign language and assistive communication devices in order to communicate regularly. If someone saw this person out in public, not speaking, not making eye contact, APPARENTLY being completely unresponsive to the environment around them, APPARENTLY being “not there” and not able to hear or process what people are saying, they would most likely conclude that that person was what they consider to be “severely” autistic (there is, of course, no “severe” autism.)

Yet, that supposedly “severely autistic person” IS there and IS accurately perceiving the environment around them, IS able to understand what people are saying, IS able to process it. And what’s more, non-speaking adult autistics have come forward time and time again to say they ARE glad that speaking autistics are doing advocacy work and that speaking autistics CAN speak for non-speaking autistics. There was even a non-speaking autistic person I came across who went through ABA “therapy” as a child (that people thought he was “enjoying”) and when he was finally given an assistive communication device, his first words were, “leave me the fuck alone.” I heard of another whose first words when they got an assistive communication device were, “I understood everything.” But “autism moms/dads” don’t want to hear that. They don’t like a world where autistic children, even those who can’t speak, are capable of independent thought.

People seem to think any non-speaking autistic person who has high support needs and requires round the clock care is also intellectually disabled and as such unable to speak for themselves. However, there are autistic people who do need round the clock assistance who aren’t intellectually disabled and who CAN type and have coherent, intelligent conversations online in the written word, and people are assuming incompetence and intellectual disability based solely on the ability to inability of a person to speak, on whether or not they need help with basic living tasks.

Most people are familiar with the movie Rain Man. Despite it being a very good representation of an autistic person with high intelligence but who has high support needs, it’s a movie a lot of autistic people find HURTS autism acceptance by creating the unspoken expectation that ALL autistic people are like Dustin Hoffman’s portrayal of an autistic person in that movie. That said, I DO love that it shows a scene where Tom Cruise screams at his autistic brother, played by Dustin Hoffman, “you can’t tell me you’re not in there!!!” He screams this in frustration after seeing Dustin Hoffman win them a lot of money in Las Vegas because of his special gift of being able to estimate mathematical things like statistics, yet, he is verbally unresponsive much of the time, has rigid routines, etc. I love it because it shows the fundamental misunderstanding people have about intelligence in autistic people and what it “should” make us able to do.

It’s a misunderstanding I’ve run into SO much in my life. I actually have a very high IQ. I’m very intelligent and very coherent in the written word. I am also an expert social chameleon – over the course of my life, I have become expert at “masking” socially (basically acting like a non-autistic person) If you’re only ever around me very periodically for short periods of time, you will most likely walk away from an interaction with me thinking that I’m: funny, outgoing, intelligent, charming, and certainly could NOT be autistic. BUT if you’re around me regularly, you will begin to understand that there’s a limit to my social abilities. You’ll begin to understand that I have a mental repertoire of stored “acceptable” neurotypical social responses, around the 300th time I’ve responded, “cool” or “awesome” to something you’ve said. In SPOKEN conversations, I’m much like what’s called a Non-Player Character in a video game, which is basically a character that is programmed to say only a few things. At first, the Non-Player Character may appear to be able to interact really naturally with another character playing the video game, but the longer you interact with them, the more you hear them repeating themselves, the more you realize there’s a limit to what they’ve been programmed to say. I’m the same way.

People have seen me demonstrate intelligence either through convincingly masking or through something I did well and then from that assumed that I could of course do other things well, like organize, like to basic or “simple” tasks. I have been offered jobs by people when I wasn’t even looking for work because they were so impressed by my apparent competence, only to fire me later when it was discovered that I routinely mess up on the “simple” things they think I should of course have a grip on.

Here’s what’s happening – you can be intelligent, genius even, yet have executive dysfunction.

Executive functions are controlled by the prefrontal cortex of the brain which has been shown in studies to take 30% longer in autistic and ADHD brains to develop and even when it does develop, functioning is still impaired.

Executive functions can be thought of as the air traffic control tower in the brain. They are cognitive abilities that allow someone to do things like start and stop tasks, take a goal, and break it down into smaller steps and arrange those smaller steps into the most logical order, to then start, continue, and finally complete those tasks. They include things like working memory, inhibition (being able to control and sustain focus and attention without getting distracted), initiation (being able to begin a task) and more.

I personally have executive dysfunction and the best way I can describe it is that instead of having a truly competent manager in charge of the air traffic control tower in my brain, I don’t have a manager at all. I have some lower-level employees and none of them know how to work all together to keep planes from crashing.

Yet I still don’t think this is a disorder or defect, you may be asking? Yep, I still think this is just another way a human being develops, and still think that if neurodivergent people outnumbered neurotypical people, the society would be built to accommodate US and our unique executive functioning and would look nothing like the current society.

Yet I still don’t think this is a disorder or defect, you may be asking? Yep, I still think this is just another way a human being develops, and still think that if neurodivergent people outnumbered neurotypical people, the society would be built to accommodate US and our unique executive functioning and would look nothing like the current society.

As it is, we need accommodations and help in the current society. Some of us need a lot of help. While I’m very intelligent, I struggle with keeping up with the simple tasks of daily living, for instance. While I may APPEAR to be competent enough to run a company or be a manager, when I’ve been in managerial roles, it quickly becomes apparent that no I am not. Time and time again people have been baffled by how someone who could demonstrate as much intelligence as I do be so absent minded and make so many mistakes on the job.

What the heck does this have to do with “autism moms” and “autism dads” assuming autistic adults are not like their “less advanced” children because we demonstrate intelligence in the written word? Everything.

I mentioned coming across autistic people who would, by most “autism mom” and “autism dad” standards, be considered “severely” autistic. I’ve observed exchanges between autistic people like this and “autism moms/dads” online and seen the “autism moms/dads” attacking the autistic adult person for trying to speak for their “severely” autistic child and then seen them be absolutely flabbergasted when the autistic person reveals that they are non-speaking and living in a group home or needing round the clock care. The autism moms/dads just don’t know what to say then. They find it hard to believe that someone could express such coherent communication in writing yet not be able to transfer that intelligence to the simple every day tasks of living or, indeed, to speaking.

It reveals that a lot of autism moms/dads believe that their own non-speaking children are unintelligent. They mistakenly conflate the ability to speak with intelligence and think if anyone can even write, that means they are more intelligent than their own children.

But these parents also forget that we WERE once autistic children. I wasn’t born knowing how to mask, for instance. I was actually painfully shy and “overly” attached to my mother as a young child. I LEARNED how to mimic my peers, and to do so convincingly, because I grew up in a town that was vicious in terms of bullying. I WAS able to speak, unlike some other autistic people, and I used that ability to my advantage to camouflage myself. But maybe THEIR children haven’t learned how to mask yet. Maybe THEIR children are at the same age I was when I also hadn’t learned to mask yet, when I was more obviously showing autistic traits.

And going back to the four points above, point three, being bizarre to assume someone’s functioning based on their ability to communicate in the written word, I’ve pretty much covered that here. But to elaborate a little more, there have been plenty of times where I lost the ability to speak because of sensory overwhelm, overstimulation, being in an autistic shutdown, etc. yet I was able to text. I also experience selective mutism which had been mistakenly misconstrued as me giving the “silent treatment” at various points in my life when in reality, I COULD NOT speak no matter how much I may have wanted to. It still happens to me as an adult. It’s not something I’ve aged out of. Someone, reading the long posts I often make, might assume that if I can write these big, long posts, of course I could speak 100% of the time. But they’d be wrong, just as they’d be wrong about people who can type but are NEVER able to speak.

You simply cannot discern someone’s level of functioning from the written word OR from whether or not they’re able to speak orally. Not only is it impossible to do so, even if you could do it, it wouldn’t be accurate from day to day as functioning levels fluctuate in EVERYONE, regardless of neurotype, from moment to moment, day to day, based on how much sleep you’re getting, how much stress you’re under, what circumstances you may be going through, etc. Those factors affect even a non-autistic person’s ability to function from day to day, so of COURSE those factors also affect an autistic person’s ability to function.

So yes, autistic adults, even those who are able to speak coherently on YouTube videos and even those who are able to compose articulate communications online in the written word, ARE able to advocate for autistic children, even the ones parents mistakenly consider to be “severely” autistic, because even adults who would be considered by them to also be “severely” autistic are able to enter these online spaces and have these conversations with these parents.

And even if there WERE such a thing as being “severely” autistic (which there isn’t, there are simply autistic people who need various levels of support) a “non-severely” autistic person would STILL have more in common with that “severely” autistic child than the non-autistic parent does. Being in PROXIMITY, even close proximity as parents are with children, to an autistic person does NOT make anyone more of an expert on the autistic experience than an actual autistic person.

And it’s just absolutely freaking bizarre to me that a parent who SHOULD want the world to be more accepting of their children and should want there to be more accommodations available to their child and should want their child not to be discriminated against or harmed is FIGHTING the adult autistic people who are trying to achieve these things for all autistic people. Just absolutely bizarre why they are not THE most enthusiastic supporters of adult autistic self-advocates!!!

The only reason I can see why they wouldn’t be is because they’ve bought the concept of autism as a tragic disease (which it is not, studies prove it not to be) and they’ve built their whole identity around being a victim of it, and they don’t WANT to accept their child as they are. They WANT to be seen as a martyr. They WANT to hold on to the narrative of them as the hero fighting the formidable enemy of autism that has their poor child in its clutches. And THAT is why they bristle against adult autistics who say point out the studies that are being done which demonstrate that autistic brains are basically just a different operating system, like the difference between Mac computers and Windows, or between Android phones and iPhones.

They bristle against adult autistics because they don’t perceive their child as healthy, they perceive their child as defiant and constantly injuring themselves in meltdowns and they are freaking out about how their child will ever be “normal” and have the things THEY think their child should have, which basically boils down to the life of a neurotypical child. They don’t want to hear that autistic children don’t just melt down because meltdowns are part of autism, and that meltdowns ONLY happen when the autistic child’s needs aren’t being met. They don’t want to hear that what appears like defiance in their autistic child is actually an unmet sensory need. Because then that suggests that they’ve been neglecting their child’s needs. It suggests that they need to change. And they’d rather stick to the narrative that paints them as a soldier in the trenches besieged by some horrible adversary in an never-ending war. Because then they don’t have to change. Then, they don’t have to admit to themselves something NO parent wants to admit to themselves – that the way they’ve been acting has been harming their children. It’s no wonder these parents are so resistant to autistic adults because this is what we show them, that the standard view of autism leads to poor outcomes for autistic children and that it needs to change. These parents are told by hate groups like Autism Speaks that autism is evil and that they are heroes, and they really internalize that. And then when adult autistic people come around trying to clear the record, we are resisted.

They don’t want to hear that the “therapy” they’re putting their kids through is literally abuse. No parent wants to believe they’re harming their kid, but some parents just get so wrapped up in making a kids’ diagnosis all about them that they can’t see the harm they’re doing and will vilify ANYONE who tries to point it out to them.

And so, bizarre as it is, there is this HUGE rift between the adult autistic community and autism moms/dads. Autism moms/dads don’t believe we have any right to advocate for their autistic children because we’re, according to them, nothing like them and so don’t understand the REAL issues, despite the fact that we WERE once those autistic children and very much understand the real issues and certainly understand autism more than a non-autistic person, especially one who has chosen to see autism in the absolute worst possible light and who has shut their mind to new information demonstrating that autism is just another way of being human.

In a society where oral, spoken communication is the norm, where eye contact is the norm, where small talk is the norm, where our current professional and scholastic expectations and social expectations are the norm, sure, autistic people are disabled. And I mean that as a verb, like we are actively BEING disabled by the society around us. Were the society predominated by autistic people, not being able to speak verbally wouldn’t be seen as some tragedy, just as a different way of communicating that would readily be accommodated by typing, by sign language, by assistive communication devices. Not being able to make eye contact would be the norm. Professional and scholastic and social expectations would be modeled around autistic neurology and so suit it much better. And maybe the neurotypical minority would be seen as being disabled in a society like that.

The main crux of the issue is that neurotypical people think that just because their neurology is the most common, it is the best, and anything different must be bad. That’s really the whole issue. And autistic adults like myself stand up and say, “actually being autistic isn’t bad, we’re just different.” And THAT is why we are shot down by neurotypical people, for daring to suggest that being neurotypical isn’t the pinnacle of righteous humanity. And that quite frankly just needs to change. Neurotypical people need to realize there’s more than one way to be human and that just because the majority of people are one way, that does not mean it is the BEST way, and that other ways are bad and shouldn’t be accommodated.

Maybe one day we will see the day where “autism moms/dads” stop fighting the very people who are trying to make life better for ALL autistic people. And that day can’t come too soon.

***

I thank you Kai for sharing this amazing post.

Namaste