“Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments” ~ NIH (National Institute of Neurological Disorders)
When I first learned about autism, as defined by many organizations, I understood it to be a “disorder,” with “social impairments” being one of its defining characteristics. As autism was also spoken of as meaning someone who did not and could not understand others, and that the very word “autism” stemming from the Greek word “autos” or “self”, suggested a person who had little interest in other people, I assumed this meant my child didn’t care about or want to make friends.
Add to this the unfortunate wording of what so many of our kids engage in – “self stimulation” – which to my ears anyway sounded vaguely masturbatory, and as we live in a society tending toward the puritanical, self stimulation, even to my liberal notions, carried with it a decidedly negative connotation. The word “stimming” is a bit better, but even so, I cannot get away from the sense that this feeds into those negative assumptions about intent and a lack of interest in connecting with others, which is still believed by a great many.
When my daughter described stimming as “self-care” (you can read that post ‘here‘) I was filled with admiration. Self care is such a wonderful way to describe what I see her doing. Self care is not about rejecting others, but instead describes a way of regulating oneself so that one can engage with others. This idea that autism means disinterest in other people, an idea so many have embraced, does not describe my daughter at all. To the contrary, my daughter and so many of my friends who share her neurology care deeply and take tremendous pleasure in their various relationships, just as those who are not autistic do. (That this last sentence is even necessary to write, demonstrates how far we have to go.)
This idea that autism characterized by “social impairments” is something that drives me crazy. It isn’t a social impairment. It’s a complete misrepresentation and misunderstanding of what autism means to those whose neurology is called autistic. My daughter does not lack a desire for friendship or have a disinterest in other people. Unable to often communicate what she intends, constantly distracted by things others cannot and do not necessarily see, hear or feel and a need to move her body in ways others misinterpret, it is no wonder “friendships” present a whole series of issues for her.
So many of the assumptions about autism, based on what non autistic people witness and believe they are seeing and the theories they then develop supporting these assumptions continues. Assumptions, spoken of as though fact, with therapies devised to “help” what is assumed to be true and yet, is not, is based on a false premise. But when we were given Emma’s diagnosis, I did not question these various theories. I, as did so many others, took them at face value, believing that though there was much we still did not know about autism, these beliefs at least, were some of the things we DID know about autism and by extension autistic people.
Oh how wrong I was…
Emma holding Teddy With her String
Emma's Hope Book 
I wish this post could be mandatory reading for all mental health professionals. Many do good work…but there are also many who do not, due to the persistent spread of the damaging stereotypes relating to autism. I’ve had many struggles with social pragmatics, yet have always had a strong desire to connect with others…so when I hear, “autistics are shut down, do not seek social connections”…it’s painful. Which is I am very grateful for this post.
Ariane, thank you. You and Emma are changing the path I am taking with my sons. Some days I am filled with doubt and find it hard to disregard advice from professionals, even though I know it is not helpful for them or for me. Your posts give me the confidence not only to challenge professionals when appropriate, but also to seek out my own assumptions and then look beyond them. I try to practise presuming competence every day, and I have a way to go, but the intention is there now. And I am excited about it.
We are “impaired” in our ability to comprehend and fit in with the very strange neurotypical social rigidities and innuendos. Put me in a roomful of autistic people and I am completely comfortable and I know what is expected and how to behave. A lot of that includes being tolerant because each of us has a different way of expressing ourselves.
Thanks to you, Ariane, I hope more NTs will come to value tolerance, and not judge “difference” as “impairment.” Sometimes it must feel to you like you are a voice crying in the wilderness. But we will get there.
Em, Ariane, Nick, Chase, Henry, Henry, Jack, Grant, Michael, Harry….EVERYONE,
We need to work together to remove this word and see that it is put in its proper place – THE PAST.
I love how this reframes and redefines what Autism means. It is perspectives like this that will so hugely impact what Autism looks like in the decades to come. Thank you for sharing it!
I learn so much from you. even though i feel i have already made huge growth, i know i still have further to go. Thank you for always taking the time to explain it a way that enables me to share it with my friends and family who are not parents of children with ASD. It is hard to change those set ways of thinking, but it will happen with more exposure. So keep it coming :)!
Brilliant! This is wonderfully insightful. Thank you so much for writing it, cannot wait to share with other parents!
For the most part people in charge of getting to make the diagnosis criteria rely on other people who get to say what they imagine they are seeing when they look at us. Regardless of how wrong they are they are the experts. Those of us who live autism every day are considered the least reliable when it comes to explaining our own existence. Our explanations have been around for a coupe of decades now and are quite consistent, but because we are autistic our words and our humanity are still disregarded. I am hopeful that in the future we will somehow hit that critical mass that will cause the scales to tip. It might not happen before I die, but I think it will happen during Emma’s lifetime. So, we must keep on keeping on and continue to be there for one another until that day comes where we are actually counted as valid human beings and heard for what we have been saying for years. Thank you for getting up and putting in the work towards changing perceptions and understanding with us. The more in our ranks the more quickly we can hit that critical mass that will change the tide.
thank you, I start to think that there is no ““autos” in autism.
Few days ago we spend a day with autistic boy and then we were leaving he was crying and got really upset.
YEP!!! – ” little interest in other people”,
YEP !!! – “didn’t care about or want to make friends.”
As were were walking away and I can still hear him crying I was thinking what if I just call our psychologist right now? would she say that the boy is crying because he is trying to control the situation or would she say that his brain is inflexible and he doesnt like people/objects moving through the front door?
But to be honest, up to this moment I was under impression myself that “social impairments” is a real issue for autistic person.
So thank you very much for this post. I guess I need to sleep on it…
I think that it also, in a lot of ways, depends on exactly how you define “social impairments”. From the sound of it, a lot of people have had it defined to them as “the person does not want to socialize” – which is not how I would define it. The way I would define the term “social impairments” is:
– Due to various reasons (including potentially: issues with neurological differences, Intense World Theory, and difficulties with gross and fine motor coordination), the person in question has difficulties in social interactions because of problems with non-verbal (and often verbal, even if they are speaking) communication. These problems, or issues (depending on what terminology you think appropriate) result in difficulties interacting with peers on the same level. Note: I’ve heard / read that a number of autistics relate better to adults and to younger children than they do to their own peer group – I certainly did!
So, yeah – I would definitely say that it depends on how you define the term. I’m definitely not an extrovert (AKA I’m not energized by crowds, I’m drained by them; and vice versa, I’m energized by alone time, not drained by it), but I still need social interaction. According to the psychologist I saw for a few years (before I moved to St. John’s from Toronto), there are very few people, only those who are naturally at the very end of the introversion spectrum, who can do without social contact. I’m strongly introverted, but I still need some forms of social contact to keep myself sane and un-depressed. But I have difficulties interacting in groups of more than three people (including myself) because of my difficulties reading body language (I can intellectually work out basic body language for two people, but when it hits three others, that’s a bit too much work for me to analyze, interpret, and maintain enough focus on the conversation to avoid getting lost) and tone / pitch / etc. of voice. (“Tone” defined as “emotional content”, “pitch” defined as “frequency / wavelength” of sound.)
I don’t know. A lot of language has bias to it; there are words we consider to have positive or negative connotations (like: “obsession”, for example – or “self-stimulatory”, as you pointed out in this post, Ariane), and I can see why people might not like the use of “impairment” in that sense. But I’m not sure how else one can describe it. I would say that as long as one has the correct definition in mind, it’s not a problem… but in so many cases, you’re looking at the “commonly known” definition, which tends to be either incorrect or incomplete. (For example – the commonly known definitions of “introvert” and “extrovert” are: introverts = shy; extroverts = outgoing. But that’s wrong. I’ve known shy extroverts, and outgoing introverts. The real definition is what I alluded to above: introverts = drained by crowds, energized by being alone; extroverts = drained by being alone, energized by crowds.)
Anyway, that turned into a bit of a rant, and I think I kind of lost track of where I was going… except that what I basically meant to say is that “social impairments” seems to me to be accurate – as long as you’re using the correct definition of the term.
{{{Deep Pressure Hugs}}} to Emma, Ariane, and Richard!
😉 tagAught
I wish they would phrase things that made it clear if there is a social impairment it is in perhaps in not doing what is socially accepted and having a hard time with some activities that go with being social.
I wouldn’t boil it down to introvert versus extrovert as their are extroverted autistic people who still find social interaction draining however much they may initially want it more though.
I have had a hard time lately so I have behaved more often in ways that would definitely be socially off putting for those who don’t know me. I seldom seek out people at all right now even online as there is nothing surplus still if people could see themselves as at the very least as impaired in behaving in ways I find suitable and appealing that would be progress. Just like communication there is an obvious two way component to socialization
When you are young if you cannot tolerate the random noisiness of your same aged peers they say you lack social skills Uhm they lack noise regulation and move too much and for reasons I don’t understand. Just when they begin to make more sense and get more orderly all of a sudden a bunch of other things change and everything is more complicated again leaving you in the dust.
In social situations it sometimes takes a long time to feel comfortable and by the time you work out what to do and what people will do suddenly they are over . When you are young you cry perhaps when you are old you agonize over all the ways you messed up. What you should have done sooner…
I agree strongly with July that the way these things are worded is largely based on what is imagined. I don’t really understand how so much of it is such a large non-scientific leap from what is observed. While I know many autistic people who have a hard time with social interaction I have never met one who didn’t wish it otherwise. Some are more self-containted and require less but oh so many hours spent trying to work out how tiny humans worked when I was one only to have them keep getting more complicated and sometimes brutal.
The whole lacking in imagination because of what is guessed at from how many autistics play is worth of a thesis or two.
These wild guesses from what is observed to what they say it means don’t get made for other disorders that I can tell. Broadly things like over-valuing speech and so on happens but the lack of science applied to every description of autism is shocking. When I was a student I was a bit grateful for it because while often counseled it would be professional suicide to specialize in anything autism when getting my psych degree the studied about autism had the most holes in the science so while never one to hold back just because people said I should questioning the leaps that seemed a combination of many science errors we had been warned not to make was pure gold as far as mining for marks went.
I don’t understand the tricky bit as that all people are different is a big fundamental so why is what one person needs from a social situation or can cope with being different a deficit? If it has to be described as such shouldn’t the failure of those without any supposed disorder in empathy (grr) to notice those different needs and accomadate them also be labelled in the interests of fairness?
Even when children were largely scary I wanted them not to be. Even when the whole world makes me feel so wounded my dog and my wall are all I can handle I wish it were otherwise. I am so danged interested in people I spent 6 years studying them formally. I have not a hope in heck of the overall investment in how NTs work and what they want being reciprocated as far as people understanding they could do things differently. I am the disordered one so I must always even in adulthood be reminded of that and how I should just learn to be otherwise.
That the irony of this is lost on the experts who claim we lack social skills and proper feelings about people or even empathy would be funny if it were not so sad.
“…a “disorder,” with “social impairments” being one of its defining characteristics.”; “…suggested a person who had little interest in other people…”; and “…didn’t care about or want to make friends.”
The above statements amuse me greatly. There was a girl who grew up one street down from where I did who was autistic. She LOVED making friends! She tended to try to befriend those much older than she (typically adults when she was around 12+). She didn’t relate well with peers her own age. That could be a “social impairment” in the eyes of a “professional,” I suppose. We just considered it to be a loss on the part of her peers. She was a very sweet girl and is now a very sweet young woman.