From Earthquake to Acceptance (a few more metaphors)
March 18, 2007 by Kristina Chew, PhD
Filed under Health
I have been thinking a great deal about metaphors used to talk about autism lately—so this article by the executive editor of the Ocala Star-Banner and an autism mother, Robyn Tomlin, caught my eye for the way she moves from referring to the “autism earthquake” that first “rocked our world” when her son, Avery was diagnosed, to her sense that autism has now “hit the mainstream.” Tomlin highlights MTV’s documentary on three autistic teenage boys, True Life: I have autism as a sign of this, as well as an “emerging autistic culture that advocates for “NTs” (neurotypical people) to embrace “neurodiverse” people like “auties” (autistics) and “aspies” (people with Asperger’s syndrome).” Tomlin writes in an affirming conclusion, “the world’s understanding of autism has changed for the better; the world, as her title notes, is “adapting to autism.”
Let’s hope these “adaptations to autism” are not transitory, but permanent, and real.
Hear, hear!
And let’s work to make sure that the mainstream (the society at large, and also the mainstream of families of autistic people) understand that “acceptance” does *not* mean “doing nothing”. That there is an all-important difference between autism per se, and handicaps secondary to autism. That we stand united with the mainstream in efforts to mitigate the handicaps secondary to autism. But that autistic ways of sensing, feeling, thinking, and yes, communicating — do not need to be eradicated in order to achieve success in navigating the mainstream. Rather, they are the part of the picture for which we urge acceptance.
Except of course some of those ‘handicaps’ are attached and things become a little more complicated than autism=good ‘handicaps’=bad.
I wonder if Mr. Schwartz can tell us which “handicaps” are secondary to autism? And on what authority he determines which “handicaps” are primary to autism and which are secondary?
I can think of one Mr Doherty – one that this MTV program seems to have attempted to highlight and which you appear to have missed – society. Society at large is a handicap to autistic people. And as Ballastexitenz has indicated, this is a handicap that is attached.
A feeling of self-worth is not in the DSM and yet autistic people should have a sense of self worth. However, the instances of society attempting to remove any sense of self worth from autistic people are many and varied. Indeed, I know of some people who apparently consider themselves advocates who believe its OK to dismiss the opinions and experiences of autistic people Mr Doherty. How odd.
Kevin
You did not answer either of the serious questions which I asked.
What is odd Kevin is that some internet commentators fail to address the real needs and challenges of persons who are profoundly autistic, persons who can not speak for themselves, whose parents or other actual caregivers, as a matter of necessity, law and morality, speak for them.
Can you answer the questions I posed to Mr. Schwartz or will you evade them again?
Are you seriously suggesting that stating that society can be a handicap to autistic people is wrong? Or that the expectations of society are not handicapping are wrong?
I’ll answer you, I just want to be absolutely clear that I understand your position before I do.
As I recall, Mr Schwarz is more versed in the experience of BEING AUTISTIC than you can ever be, Mr Doherty. QBE. And he has an autistic kid. Wow. QBE squared.
It’s preposterous to suggest that people looking in can decide what is and isn’t part of who we are vs. what is thrust upon us. Kev gave a good answer.
Abuse is also a societal handicap, as is PTSD (just what we needed…a BIGGER startle reflex), the accompanying raised anxiety levels, the social stigma-try getting a job when everyone is so AWARE of autism, Mr Doherty, and you yourself are autistic. Go try it sometime. Rock and fail to make eye contact and talk in a flat affect. Society’s requirement that one have a 40 hr/week job is also, of course, a societal handicap.
And this lack of fine motor skills thing, that isn’t autism in and of itself either, or the beaded jewelry I have from autistic friends wouldn’t exist…et cetera.
We aren’t stupid. We know “profoundly autistic” people exist. You never DID respond when I told you about the kids I worked with. Wonder why. Is it an NT handicap to not see things you wish were not there?
Kev
You changed the subject and avoided answering the questions I posed to Mr. Schwartz in reply to my questions again. You intervened in that discussion with your initial response so must have understood my questions well enough and my questions are simple, direct and straight forward.
I don’t expect you to answer. You can’t.
kassiane
You question my right to ask questions on behalf of my son who can not speak for himself?
I live with my son for the last 11 years. I have a much better picture of his realities than a high functioning autistic person half a world away on the internet who has little in common with my son.
You offer hostility but not enlightenment. Exactly which handicaps associated with autism are secondary to autism and on what authority are those classifications made?
I’ve some things I’d like to add to the discussion but here but haven’t the time right now to do this adequately.
By way of analogy, when I was in college, reading books by Asian American writers taught me things about myself that I would not have known from growing up in my household.
Ugh – I am getting very tired of the tone of some of these threads. It seems like any thread involving Mr. Doherty and his philosphical opponents quickly deteriorates into a name-calling pissing match. I come here looking for insightful, respectful analysis of autism issues, as modeled by Ms. Chew. I am not interested in the continous rehashing of autism ideology.
Mr Doherty,
I did answer your question. You just elected not to accept the answer as it doesn’t fit with your preconceptions. You dismissed my opinion as not serious as it didn’t provide you with the clinical answer you wanted.
I further asked for clarification which you seem unable to provide. I’ll ask you again: are you suggesting that society provides no handicap to autistic people? A simple ‘yes’ or ‘no’ will suffice. As I’ve indicated, despite your opinion that ‘I can’t’ – I’ll be quite happy to answer your questions. I just want more clarification on your definition of ‘handicap’.
Anon, I feel your pain. However, it is increasingly hard to engage Mr Doherty anywhere except where he comments as he doesn’t allow commentary on his blog.
Plus the fact that I am genuinely fascinated by his stance.
Might I suggest you simply ignore any comment that you don’t like and read on?
Kev and anon
I asked 2 straightforward questions of Mr. Schwartz which neither he, nor Kev answered.
Mr. Schwartz stated “That there is an all-important difference between autism per se, and handicaps secondary to autism.
I asked whether “Mr. Schwartz can tell us which “handicaps” are secondary to autism? And on what authority he determines which “handicaps” are primary to autism and which are secondary?”
Despite kev’s statements to the contrary he did not answer the questions. His comments about “society” were not an answer. They were a diversion.
I won’t waste any more time asking such questions of Kev.
Ms. Chew
You said:
“By way of analogy, when I was in college, reading books by Asian American writers taught me things about myself that I would not have known from growing up in my household.”
If that analogy referenced my comments then it was not an apt analogy. High functioning autism and Asperger’s are different disorders, although both on the Autism Spectrum, then classic autism disorder.
Many books and articles are written by HFA and Asperger’s persons. The persons with severe autism, some of them living in institutions under custodial care, are not writing too many books or posting acerbic comments on the internet. Many such persons are UNABLE to speak for themselves. Family members who actually care for and live with such persons are best placed and have the practical, moral and legal duty to do so, speak for them not J Sinclair, M Dawson, Kev, Kassiane, or anonymous.
Hopefully, some day, Kev, kassiane and you, will come to understand that high functioning autistic persons do not share the same life realities as lower functioning autistic persons. There are huge differences in cognitive and communication abilities between different points on the spectrum. A book by a high functioning autistic person is not “about” low functioning autistic persons.
“Despite kev’s statements to the contrary he did not answer the questions. His comments about “society” were not an answer. They were a diversion.”
So can I infer from that that you do not believe that society can handicap autistic people? Interesting.
“Hopefully, some day, Kev, kassiane and you, will come to understand that high functioning autistic persons do not share the same life realities as lower functioning autistic persons. There are huge differences in cognitive and communication abilities between different points on the spectrum”
Hopefully Mr Doherty, some day you will realise that nobody claims they do.Who can truly say they share the same life realities as anybody else?
What is so very difficult for you to understand about this? Why do you insist on constructing this strawman time and again?
I would wager that in terms of what you call functioning level your son and my daughter are very, very close. Nobody, I repeat, nobody speaks for, or on behalf of my daughter, other than my wife or I. Whilst she cannot speak, we do it for her.
However, it is simply a logical fact that other autistic people have a much more realistic and accurate take on how my daughter (and – like it or not – your son) experiences life. This is irrelevant to their functioning level – something which is in itself a misleading and ever changing state for a lot of autistic people – including your son and my daughter. You should also know by now that there are ‘low functioning’ autistic people who are contributing to this discussion and in general elsewhere. I find it fascinating that you, who believes society does not handicap autistic people, are prepared to handicap people with your ideas on what they are like. I also find it fascinating that you who say that autistic people cannot speak for your son as they don’t know him, believe you know them well enough to assume their functioning level and/or diagnosis and how that affects them or demonstrates itself on any given day.
Are you really so egotistical to assume that we know everything there is to know about the idea of functioning levels in autism? Can you illustrate to me any other area of autism that we know 100%?
Are you really so egotistical that you will state that other autistic people can have no insight into your son’s life, whereas you – an NT adult – understands him perfectly?
I think that somehow you feel threatened but I am bewildered as to what that threat might be. No one, despite your blog entries to the contrary, thinks that autistic people require no help. No one wants to see your son struggle without that help. We’re not your enemy Mr Doherty.
I am much appreciating this discussion as I think it is addressing, or attempting to address, an issue that I have seen more and more reference to—namely, can someone who seems to be what is called “hfa” have anyting to say that truely coheres with the experiences of someone who is “severely autistic”?
Mr. Doherty, I really appreciate it when you post about Conor. He reminds me a great deal of Charlie from the photos you post; like you, we have found ABA to be a most effective way to teach Charlie. It would be very easy for me to describe Charlie as severe and I do think that is how many others perceive him. I could easily write blog posts that paint nightmare pictures of autism as regards how I have cleaned the inside of my car and under my fingernails, of our attempts to teach Charlie to read (he has learned 20 words; he is starting to forget some of the ones he knows best), or of the “sacrifice” of moving households numerous times for the sake of Charlie’s education.
I understand that so-called “hfa” persons do share some of the “same life realities” as those deemed “lfa.” These include physical and emotional suffering (if I may use that word) that cannot be expressed in langauge. These include the day to day impunities (if I may use that word) of not understanding social signals and of grave consequences as a result. Some of the individuals I am referring to do have certain abilities that my son does not; as a result, they have been cast out in a world that has not been very kind to them, and that they could have used a little more help in navigating, had their needs been known.
Regarding my analogy to Asian American writers: In reading a number of books by many authors, I learned (also through the teaching of certain professors) much about myself that my parents and family could and would never have taught me. The experiences of the writers in these books were often very different from my own: a 3rd generation Chinese American like myself has little in common with someone who is a refugee from Laos, and yet there are deep, differently tinged, commonalities. To be 3rd generation Chinese American with one’s grandparents from southern China is a very different experience than oneself being 1st generation from Fujian and working in New York City restaurants.
Most of all, I thank you and everyone else for your commenting about these topics here. I learn much from all of you.
So tell me, what is my functioning level and on what are you basing that?
I live with my dad, can’t cook (really really can’t cook), forget to do laundrey, forget to eat, sleep odd hours, but can do my hair, shower, talk about 3/4 of the time, and-oh I bet this is it-blog. And go to gymnastics as OT 3 times a week. Bet that’s it too.
I mean, really, lay out your ever moving criteria.
And a QBE beats a looking in any day. We know what it is to be autistic more than you’ll know, ever.
Hello Kassiane
You are a functioning on a level which demonstrates an excellent command of language. My son does not have such a command. It is a huge difference between many children such as my son and persons who post on internet forums.
Surely you can underdstand that distinction?
Ms Chew
Thank you for keeping the discussion civil. Terms such as low and high functioning autism are not arbitrarily designed. The Psychiatrist Laurent Mottron for example uses the term high functioning in describing the subjects of his autism studies almost all of whom are either high functioning or savant.
I am not ashamed of my son’s limitations. To me I would be doing him a disservice if I let internet posters such as kev prevent me from describing life as it really exists for my son. I will not render his autism and his challenges invisibile by succumbing to misguided neurodiversity politicial correctness.
I do wish Mr. Schwartz had explained what he meant by handicaps secondary to autism in the first post. I do not at all accept Kev’s explanation of Mr Schwartz’s comments.
Again I thank you for your civility. This is the only neurodiversity oriented forum on which I have found it possible to have a calm discussion without too much in the way of personal attacks.
Why is LANGUAGE the only criterion that matters?
There is no logic there.
What if it was something in the nonverbal realm?
Not like it’s any of your business but my independant living skills suck, I’m just good at stringing words together. So why is that ‘not knowing about autism’ when some people who have a LOT more trouble with this whole WORD thing can fairly easily cope with the daily living thing?
Where’s the logic? You just CAN’T hang all your perceptions on a multifaceted condition on ONE facet, especially one that frankly seems to mean the least (typing, writing, speaking, PECS…they all get the point across…). Can you explain your logic, or is it another “because it supports what I want to think” kind of deal?