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Posted By A Son-Rise Message Board Participant on December 21, 1999 at 14:39:52:
In Reply to: Real acceptance? posted
byAutistic and proud on October 29, 1999 at 08:08:26:
: I recently got an e-mail from the Option Institute claiming that Raun Kaufman "has no trace of his original condition", as if this was something wonderful. If the Son-Rise program is genuinely based around acceptance of the child for what and who they are, autism and all, then why are there so many proud claims being made of "cures"? Why all the references in the book blurbs and website to "loving a child back to life", as if autistic children are dead?
I have the same problem understanding this. It is intrinsically contradictory... UNLESS you labor under the delusion that the autism is only the "bad stuff", and that that "bad stuff" is neatly excisable from the rest of the person. It isn't.
I think the reason why it is so hard for so many people to understand that, is that they see only the "bad stuff". It is so upsetting, or exists in such magnitude in the autistic individual they know or are responsible for, that there is no perspective or attention or energy left over with which to encounter and understand the "good stuff".
I say this after 6 years of encounters with parents and family of both more profoundly communication-disabled and less profoundly communication-disabled autistic kids. As a group, the parents of the latter tend to be more able to sense and connect with the "good stuff" in their kids' individual versions of autism, and tend to react as the vast majority of articulate autistic-spectrum adults do, with respect to blanket "cure" of autism vs. mitigation, accommodation, and adaptation around specific disabling factors.
I wrote something about this (Cure, Recovery,
Prevention of Autism?) on bit.listserv.autism back in
1995 (so long ago that it has finally disappeared from
DejaNews). Everything I said back then (except for my
kids' ages and then-current educational placement) is
as true today as it was 4 years ago.
: I have high-functioning autism/Asperger's syndrome,
I have a mild variant of AS myself. I
had no idea that the framework of factors underlying
my developmental history had a name -- AS -- until my
son Jeremy's atypical early childhood development led
us to seek a diagnosis for him. He's HFA; he and I are
in some respects "bookends" around the AS region of
the spectrum. More about my own journey is at the University
Students with Autism and AS website.
: and I also work with children with severe autism, doing one-to-one child-centred work on basic communication and interaction skills (yes, I did post as "Worried"). I think that *genuine* acceptance of someone for who they are is incompatible with seeking a "cure" which will somehow "transform" them into someone else with "no trace of [their] original condition".
Yes. The most eloquent -- and disturbing
-- statement of that concept was written by Jim Sinclair
in his essay Don't Mourn For Us":
"This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces."
: Even when it causes practical problems, my autism is part of who I am. In some ways, it's the deepest part of me, the part that's most truly me. I know a lot of other people with autism feel the same (I recommend Jim Sinclair's wonderful essay at http://members.xoom.com/JimSinclair/dontmourn.htm).
Heh... the flippant thing to say would be "GMTA :-)" -- "great minds think alike" (with flippantly dismissive smiley appended :-)). But it's not that simple.
_Don't Mourn_ is, among other things, a fascinating Rohrschach-test that peeks into the assumptions and the structure of how the reader has (or has not) come to terms with autism. Some parents think it is wonderful, and some are incensed by it. And some are truly saddened and fearful about what Jim says there _is_ to mourn: what might become of one's autistic child once one is gone, if the child cannot fend for himself/herself. The only answer I can think of to that very real fear, is to help find ways for families to organize into the kind of Village that it takes to (continue to) care for those of our children who can't or can't yet care for themselves.
And that is part of what the autistic
self-advocacy organization that Jim Sinclair (and Donna
Williams and Kathy Grant) co-founded in 1992, ANI, Autism
Network International, can be (and IMHO should be),
for families.
I have been to 3 of ANI's annual retreats (2 with my son Jeremy, 1 with the whole family), and I think it's important for _families_, not just adults on the spectrum, to attend, and to widen their perspectives on the breadth and width of the autism spectrum and the people on it. And then to network with other families traveling the same journey to create enough of a bond that we begin to do the little things for each other in the way of mutually looking after the welfare of our kids that constitute the "village" approach. Perhaps something as small as providing orientation and a safe phone number to call, to an autistic young adult venturing forth from afar to study or start work and life in your city. Periodic check-ins to see that things are going OK and to help identify problems when they aren't. (I realize that these examples presume a fairly high level of functioning -- but I think analogues can be found for people needing more comprehensive daily-living support. We hear about, and sometimes do, such things for elders who have no family left, after all, and in some cases _their_ living situations are significantly heavy-duty in terms of the support they need.)
: Before I got diagnosed, there were many aspects of my personality that I thought were "just me". Then I found out they were symptoms of autism. But - and this is the crucial bit - they're *still* me. This is who I am. I'm not just my autism, of course, there's more to me than that - but my autism is part of me, and a very important part at that.
I feel exactly the same way. Having a name for it is, after a long process of getting used to it, paradoxically liberating.
: I feel the same about the kids I work with. They face problems a hundred times greater than mine (especially since many of them have severe mental retardation too). They live in a world that is often incomprehensible, frightening and frustrating for them. I do what I can to help them learn, to give them language or other forms of communication with which to express their needs and make choices, and to make the world comprehensible for them. I work to make it possible for them to navigate through a world which is not designed for autistic people (just as I try to do for myself).
That is the name of the game.
There is a midrash (in Jewish culture, a side-story woven around a Biblical passage) about the Biblical account of Abraham's binding of Isaac. The midrash says that God's test of Abraham was not whether he would obey a command to sacrifice Isaac -- the foregone conclusion about Abe being that he would do so -- but whether he would see the ram in the bushes. (A primal archetype for "adaptive response", if ever there was one.) Both in terms of being the parent of an autistic son, and in terms of being an adult on the spectrum who is attempting parenthood, I have come to the conclusion that parenting, and especially parenting autism spectrum kids, is the art and science of finding the rams in the bushes.
: But there's a crucial difference between trying to make someone's life easier and trying to help them learn and flourish (and generally have fun, of course), and trying to "fix" them by getting rid of such a fundamental part of who they are.
Exactly what I said so long ago on bit.listserv.autism.
: It seems obvious to me that their autism is part of them. I look at them and I honestly don't understand how some people can't see this. There's not a normal child trapped inside an autistic "shell", there's just an autistic child. The autism goes all the way through, like the writing in a stick of rock candy. Their problems are autistic problems - and their joys are autistic joys (and they are capable of a very great deal of joy). They are beautiful and fascinating and amazing - I think far more so than "normal" kids, but then I am hopelessly biased ... :-)
:-). I try to explain some of Jeremy's seemingly-peculiar-to-non-autistics fixations in terms of their intrinsically autistic aesthetic qualities. Favorite numbers or sequences or shapes or colors or words or sounds or whatever have the magic they do for us because they touch an aesthetic sense in us that apparently isn't shared with the majority.
: I can't even imagine what it would even mean for one of them to be "cured", because you wouldn't have the same child anymore - you'd only have the same face, with the person behind it vanished forever. Your "cure" is for them to cease to exist. I can't wish for that. I want the best for that person, not for that person to vanish.
Exactly what Jim Sinclair said so eloquently.
: I understand that some parents just feel that Son-Rise is the best way for a child to learn, and aren't aiming at a "cure".
As it happens (as you will discover if you read my 1995 bit.listserv.autism post), we felt (and feel) the same way about certain elements of ABA, for Jeremy. (Not the whole nine yards of dogma surrounding it, and certainly not the success-metric promulgated by that dogma, "indistinguishability of the autistic child from typical peers".) He takes to discrete-trial format like a fish to water. Nowadays he gets DTT-style learning mostly from computer games. Computer software can be a wonderful DTT therapist for kids who glom onto the medium the way Jem does.
: But the Institute itself keeps on promoting the idea of a "miracle cure".
Which, like you, I find intrinsically self-contradictory, given the supposed approach.
: But if you truly accept someone, you stop looking for a "miracle" that will turn them into someone else. How about a truly radical change in attitude? How about some real acceptance?
Amen.
It's a two-front effort: on one side, give the individual the tools to navigate and adapt to a society in which he is a member of a small neurological diaspora. And on the other side, work to generate _change_ in the larger society, towards greater acceptance of diversity, including the manifestations of neurological diversity.
-- Phil Schwarz
board member, Autism Network International (ANI)
co-owner,
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