When I was growing up my sister was the “athletic one” and as a result for a very long time I believed I was not athletic. It wasn’t until I started dating a man who had almost no athletic abilities at all that I began to suspect this version of myself was false. It wasn’t that I wasn’t athletic, but more that in comparison to my sister, I wasn’t. These kinds of internalized beliefs about ourselves begin young. I have yet to meet anyone who did not take on some belief about themselves that had nothing to do with who they actually are, but instead was what others said or believed about them when they were young.
With autism there is a whole population of children who are growing up with assumptions about their neurology that will be very difficult for them to reject. When a two-year old is diagnosed and overhears their family, doctors, therapists, and friends speak about them as neurologically inferior it will be difficult for them to not take that on as fact. If they act out in frustration, because what they know and what they are able to say do not match, their frustration is labeled as “challenging behavior”, they are thought to be manipulative or difficult or misbehaving. If they are then punished for these behaviors, the actions they take because their bodies do not do what their minds are telling them to do, or because they are bored out of their minds from being asked to do the same thing over and over, as they grow older and continue to have picture books given to them when they are intellectually capable of far more, I imagine it must only make this perceived belief about themselves all the more painful.
Society has adopted the medical model for autism. It is a neurology seen as deficient when compared to non autistic neurology. It is pathologized because to not do so would mean insurance companies would refuse to help pay for certain therapies that can be very helpful. Things like OT and PT, and in some cases, speech therapy etc would all be deemed unnecessary. But I have to wonder whether there isn’t a better way. After all the cost our children and the Autistic population is having to pay is pretty steep. Their self-esteem is often battered, their internalized view of themselves is negatively affected, ask just about any Autistic adult about their childhood and what they believed about themselves as a direct result of what was said to/about them, even if not in their family of origin, but at school, by other kids, or the doctors they were taken to.
Many talk about how autistic children are trapped and imprisoned by their autism. A few Autistic people have written about how they lived in their own world until they were given the support to communicate. Some have even said they felt imprisoned and trapped by their autism. The image of autism as a prison, is a strong visual image, one that a number of autism organizations have used with great success in drumming up donations and funding. When I read things like that, written by Autistics, it is painful to read. Understandable, but painful. The internalized view of themselves as imprisoned by autism is what others and society has said. But if autism was better understood, if all children were immediately given the help they need to communicate in ways the non autistic population could understand, much of these views would disappear. For a long time I bought into these beliefs, too. But I have come to understand that it is not autism that imprisons my daughter, but society’s beliefs and inability to accommodate her that does.
Em’s new guitar
True, just as some of the well meaning nonsense we get from others is the most damaging. An ophthalmologist advised me to never try Grad school because my atypical migraines and learning disabilities would make the amount of reading impossible. And (Heaven forbid) I might (gasp) FAIL. I of course ignored him. My social ineptness, related to (undiagnosed) autistic neurology was actually a greater difficulty….but did not prevent my being successful in Grad School.
Jane… horrible, just horrible… So glad you didn’t listen.
Loved this, and that last sentence especially, is, well, everything.
This struck me as being such a similar experience to the bullying I experienced. The name-calling, the way I was looked at, the way I was excluded all built such a sense of inferiority that I believed I was broken. That there must be something wrong with me. It has colored my view of myself my whole life and I still struggle with terribly low self-esteem. I didn’t have a diagnosis back then: Aspergers wasn’t even recognized when I was a child. But other kids can always sense differences and it marked me out as a “legitimate” target.
Pathologizing autism — categorizing it alongside mental illnesses — might be society’s way of recognizing that support is necessary, but I agree with you that it can cause tremendous harm by defining a person according to their deficits. We come to focus on those deficits, internalize all the labels, regard ourselves as inferior. It hurts. It hurts a lot, and cripples the drive to explore what we can do.
I love reading your posts and seeing how your experience with Emma has challenged you to re-examine your preconceptions and learn to understand. If only more people were as open-minded and compassionate. I hope writing such as this can help bring about a shift in society’s perception of autism and allow us to be seen simply as people and not as objects of pity or scorn.
bj – I just hate that this has been your experience and one that so many recognize and relate to, makes it all the more awful. I keep thinking if enough of us write about this it will have to change, eventually. I’d just really like it to be in our lifetime…
I was growing up as “the shy one” (in reality I am sure it was undiagnosed Asperger’s, no doubt). But everything was listed as “can’t do that, she’s too shy”. Not only was I “shy”, I was labelled somehow incompetent because of that. Can’t take piano, “too shy”, etc etc. it seems like my “shyness” was mentioned at least once a day to excuse everything I couldn’t do or blame me somehow for everything I couldn’t do. You are so right, it WAS very damaging-very. The fact that it was not shyness but a different neurology, well that’s another post 🙂
It was through your blog I learned about presuming competence. Everything that we say to or about Sophie is said as if she is understanding every single word. Because she is. I’m not sure if its because of that or because of her personality (maybe both) but we have yet to experience any of those “challenging behaviours” we were told to expect.
I love this community, it is the most positive space I’ve come across.
I’m so glad! So glad!!
Em plays guitar now?! 🙂
(Self-reminder to practice this week.)
We just got this new one for her, and I keep thinking her love of her string, which reminds me of several guitar strings is somehow related. Anyway, yes! Emma is learning to play the guitar!
I think there’s nothing necessarily wrong with various therapies like speech, PT, OT, or whatever…depending on what their goals are.
When the goal is to get an autistic kid to look and act as non-autistic as possible, that’s going to be a problem. That’s what’s emotionally harmful, trust-destroying, and counterproductive to learning actual life and academic skills.
When the goal is to work towards sustainable ways of doing what the person themselves wants to do, that’s what therapy *should* be for.
Oh no, you misunderstood! I think OT, PT and for many speech is absolutely key. I meant that this is the reasoning for pathologizing, because otherwise these things would not be paid for, but there has to be a better way!
Oh yes. Agree.
It’s why I wish people could learn to see disability not as “there’s something wrong with you,” but “okay, you need to learn to do things differently,” and that good therapies are cost-effective in the long run.
When we were growing up, my mom was very very strongly opposed to us making comparisons, even between ourself. (Probably this technique was more to limit competition, but you know, moms are sneakily smart, so maybe it was about more.)
She would always tell us the same story. “I bet Michael Jordan’s brother doesn’t think he is good at basketball, but really I bet he is better than most people because he got to practice all the time with his brother.” (Trying to foster collaboration–I see what you are doing mom!)
She would say this to unathletic (although admittedly unconcerned about it) me, to my next sister who was always concerned she wasn’t as smart or couldn’t read as fast, to my youngest sister who thinks she isn’t smart and thinks she’s the only one of us with friends and keeps trying to force that comparison.
It’s probably best not to compare people period, but especially siblings, though it is really common.
In our family, the one who suffered from the comparison was my youngest brother. My youngest neurotypical brother. Who had this gift of talking to strangers and making them love him. Who had this gift of always saying the right thing in the right circumstances. Who had the gift of making friends and making them feel valued.
And who felt like a total failure because he couldn’t learn as fast or talk about the same intellectual subjects as the rest of us. The rest of our autistic family. He grew up thinking he was stupid.
We tried telling him that he was special in his own way. That he had gifts that we could only dream of. But it didn’t really help.
Wow. 😦 It’s awful when this happens to anyone, whatever their neurology.
My sister had something similar happen to her. She’s quite intelligent, but I was the stereotypical “little professor” growing up, and since we’re similar in age, comparisons were made. She thinks she’s stupid even though she’s not.
I’m not sure how much of my negative self-talk is absorbed from what others believe of me.
Among with the assumption of incompetence, the idea of “volontary confinement” of autistics is probably the most damaging myth for their development and general well-being. It irks me that I hear even professionals saying ‘he/she is in his own world’ about autistic children. i know for a fact that my son is NOT “happy having lunch by himself at ‘his pole'” in school, that he is lonely and would love to have friends – but he has given up as it is just too hard for him. (he does play with the girls, they are more accepting and mother him a little bit).
It may have been appropriate to talk like this in the very beginning of diagnosis of autism (with the very construction of the word meaning ‘withdrawal to self’) but we know so much more now!
You are absolutely right, the hardest challenges of autistics are not to find ways of communication but to have the willingness of the environment to actually open up to talk to them, instead of judging them by milestones, ‘normal’ behaviour of their peers and so on.
Without this openess of our whole society, it is hard for them to get through and be able to prove themselves.
That whole “in their own world” stuff is really damaging to everyone because it encourages others to believe their actions are not as damaging.
I can relate to this post people often refer to me as “the sick one” and for the longest time I believed them but somewhere along the way I stooped believing what other people believed about me and started believing what I knew to be true about myself.
I’m so glad you did!
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Just shared and tweeted the post you wrote with the footage of Helen Keller speaking. Wow!! Also shared about your blog and the Not for Sale ~ http://www.notforsalecampaign.org campaign. Hoping people will help support it.
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For me, the worst one I ever internalized was “You just don’t want to,” which was authority figures’ go-to response when I failed at something I could do sporadically, like talk smoothly or get my homework done. It’s bad because when I fail, while I’m dealing with my perfectionist backlash against perceived failure (I’m sure perfectionists out there know what I’m talking about – it’s the kind of the-world-is-falling despair that gets you sobbing uncontrollably over a 79% on a test… at 24. And then studying the material for 21 hours in the next week, one for every percentage point you lost.), I’m also more-than-half-convinced that I did it to myself because on some level, I wanted to go through the angst of spectacular failure.
Which then prevents me from seeking solutions to whatever’s causing the failure because if I’m the cause because I want to fail, what’s the point in looking for the cause? I already know what the cause is: Me!
I wrote a post, but decided to see if I could condense it into a comment.
The first-person accounts by autistic people describing isolation or “imprisonment” that *I* have read are all about the lack of a means of expressive communication being the cause of the isolation or “imprisonment”. Not being autistic per se, but lacking a means of expressive communication. Many of these accounts are from people who went on to gain proficiency in the use of AAC devices to communicate. Provisioning and promoting proficiency in the use of AAC needs to be a top priority goal for autistic people who have not developed expressive speech. It used to be that avoiding commitment to lifelong institutionalization was the biggest factor towards positive outcomes for autistic people. Now that commitment to lifelong institutionalization is less common (or at least no longer a universal expectation), I think that acquisition and development of a reliable, trusted, and respected means of expressive communication is the biggest game-changer for autistic people who have not developed expressive speech.
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Again you have said everything I feel to a t I always internalized everything I think that’s just part of autism to some degree
Is it any wonder that us people with autism internalize what society tells us ? After all part of autism is having heightened senses to everything including others views and thoughts of us. I often act paranoid because of this lol( I do sometimes feel like I’m in a prison even though I can talk, though it’s not my preferred method of communication) Especially when people assume we don’t hear or understand what is bring said. I will always remember as a young girl my parents would be talking to my therapist and I’d be in the corner ” playing ” with the doll house in reality I wasn’t playing I was listening to them talk about me and it made me mad, I couldnt say so then and I know my parents didn’t mean any harm but I believe that for all children and people not just with autism or other disabilities people and parents need to be very aware of when and how they talk about thier kids or friends! Kids pick up more then adults realize!
The Normalistic world is NOT interested in ‘help’. Never has been, and (barring divine intervention) it never will be. It is far too intersted in playing its social-dominance head-games, with self-deification the reason and becoming ‘the greatest’ ( in social terms) the end goal.
As such, autists – of all types, irrespective of seeming ‘functional levels’ are simply tools toward achieving that precise goal. Nothing more, nothing less.
Quoth the great Lovaas: (from memory) “that thing might look like a person, but it IS NO SUCH THING.” Pause. “You are creating a person from scratch, bit by bit. In doing so, you have become first, a Destroyer, in that you have leveled all opposition which lies in your path; and then, a Builder, in that you raise up from the ashes that which you will.”
Unstated, of course, is the desired outcome: “a proper bodily extension, a thing dead to all save the pleasuring of its Master, to which it is alive alone.” (hence ‘whole body listening’ and ‘quiet hands’.)
Lovaas is revered as a small-g god in many circles. His speech lives on, and is made manifest by a vast host of ABA ‘therapists’ – the majority of which treat their charges as ‘wayward animals’ AT BEST. Why – because it pleasures them to do so. (which is why the application of aversives is a chief source of job satisfaction for such tormenters.)
But ultimately: why are autists so commonly seen as liars and manipulators, when it is well-known by the very same literature that labeles them as evil that they tend to be more-or-less unable to do so?
The reason, I suspect, is a very dark one: Many, perhaps most Normal people unconsciously – by instinct – recognize autists of ALL stripes and all supposed levels of ‘capacity’ as subhuman. (I myself was reminded of that very fact anew but a few hours ago.)
When one is ‘lesser’, especially THAT kind of ‘lesser’, certain things are expected of one. Chief among these expectations is that one is to recognize one’s betters, and become whatsoever thsoe betters wish UPON THE MOMENT OF THOSE SAME BETTERS DESIRING THE MATTER IN QUESTION.
That means one is to show Worship when and where Worship is due, and that simply because it is one’s duty as a lesser being. When this does NOT happen – then one is an ‘uppity n*gg*r’, as defined by ones Owner or Owners.
Uppity, if one is a *slave*, looks like whatever one’s Owner wishes to project upon one. The goal, of course, is ostensibly to ‘break one of one’s wildness, and make one amenable to instruction’.
The ultimate goal, however, is destruction.
It’s purely up to one’s Normal masters if they wish to do ought with the resulting debris beyond dispose of it in the most expedient manner they can think of – and in doing so, one must always keep in mind the possibility of ‘sadistic merriment’.
“Difference is Evil; Torment, amusing; and Cruelty, an answer to Boredom.”
Dennis – Do you have a link to that quote by Lovaas? I would love to have it. Also have you read Nick Walker’s piece, Throw Away the Master’s Tools: Liberating Ourselves From the Pathology Paradigm? It’s brilliant. http://neurocosmopolitanism.com/throw-away-the-masters-tools-liberating-ourselves-from-the-pathology-paradigm/
If I recall correctly, the comment re Lovaas was written about in sentex.(?) – not sure of the ending. I will do what I can to find a suitable link regarding Lovaas’ attitude regarding ‘Lesser Beings’.
Here’s an ‘exact’ quote, as in not subject to my interpretation based on what I recalled.
“”You see, you ***start pretty much from scratch when you work with an autistic child.***
***You have a person in the physical sense — they have hair, a nose and a mouth — but they are **not** people in the psychological sense.”””
One way to look at the job of helping autistic kids is to see it as a matter ***of constructing a person.***
You have the raw materials, but ***you*** have to ***build*** the person.”
You yourself, in describing the behavior of the ABA ‘therapists’ *you*
observed, intimated their most-likely attitudes, specifically their reactions to your daughter’s not being ‘perfectly obedient’. It was obvious (to me) that they expected her to ‘read their minds upon the instant, and then become whatsoever they wished – without regard to ought save pleasuring their master’. (namely, the only thing that really mattered was that she was (No you don’t!) compliant.
Just like I was expected to do with MY ‘masters’ – first when growing up (in the presence of personality-disordered parents and siblings), and then once I’d left home in *other* environments.
Note that this quote by Lovaas seems fairly easy to find. I was about to find a ‘copy’ of it within about five minutes or so.
This doesn’t mention that precise quote from Lovaas. However, it DOES talk about ABA, the moral disengagment that seemed (and still seems)
the rule regarding autists of all ‘functional levels’, and the aspect of Job Satisfaction regarding the use of ‘Severe Aversives’.
Michelle Dawson explains matters far better than I could – lots of citations
at the bottom, so it seems well-researched.
Thanks Dennis. I found an interview with Lovaas that contains all the quotes you sent me in the other comment. https://listserv.uhd.edu/cgi-bin/wa?A3=ind1210&L=HOBA&E=base64&P=18024538&B=–Apple-Mail%3D_5D1A266F-6B20-4948-8E81-CDE4C7D081B4&T=application%2Fpdf;%20name=%22Lovaas%20Ivar%2074%20interview%20Psychology%20Today.pdf%22&N=Lovaas%20Ivar%2074%20interview%20Psychology%20Today.pdf
Also here – http://neurodiversity.com/library_chance_1974.html
Thank you so much.
Michelle Dawson’s piece is the one I quoted in the post I wrote – https://emmashopebook.com/2012/10/10/tackling-that-troublesome-issue-of-aba-and-ethics/ – almost 2 years ago that continues to get more views than any other post I’ve written…