Dowries, Trust Funds, and Independence
I read an article by Kristina Chew yesterday discussing new legislation in West Virginia that will give tax credits to parents who contribute to trust funds for their autistic children's support as adults. Autism professional Barbara Becker-Cottrill gave an interview discussing parents' worries about what will happen to their children as adults, stating that trust funds can provide families with a sense of security.
In seeking to help families who worry about their children's future, this legislation addresses what has become a widespread concern. Because today's society is so poorly adapted to the needs of its autistic citizens, a trust fund often can be a reasonable option. I once wrote a post on this blog suggesting that parents who were spending large amounts of money in pursuit of miracle cures would be much better advised to put that money into trust funds instead.
From a broader cultural perspective, however, the idea that it could become routine to create a trust fund for the lifelong care of every autistic child leaves me feeling very uneasy. Such a system would be based on the assumption that children labeled autistic could not become self-supporting. By characterizing autism itself as the sole source of the problems encountered by autistic people in our culture, this would divert society's attention away from the many areas where it ought to be focused—miseducation, discrimination, ignorance, and lack of suitable accommodations. These are not the result of autism, but of socially constructed prejudice.
The practical effect of such a system would resemble the old custom of providing a dowry for a daughter so that she would not be left destitute if her husband died. In those days, it was taken for granted that a woman was not capable of supporting herself. Being an independent woman, to the extent that it was possible to be one, meant having inherited money from a husband or other male relative.
For many of us in the modern world, it's hard to imagine that there was once a time when a young girl, simply because of her gender, was thought to be inevitably destined to a lifetime of never being able to provide for herself. That idea seems absurdly primitive now. And yet, there are many people today who see nothing wrong with making the same assumption about a young autistic child. As we celebrate Independence Day here in the United States, I'd say that it is time to give that assumption a lot more critical scrutiny.
In seeking to help families who worry about their children's future, this legislation addresses what has become a widespread concern. Because today's society is so poorly adapted to the needs of its autistic citizens, a trust fund often can be a reasonable option. I once wrote a post on this blog suggesting that parents who were spending large amounts of money in pursuit of miracle cures would be much better advised to put that money into trust funds instead.
From a broader cultural perspective, however, the idea that it could become routine to create a trust fund for the lifelong care of every autistic child leaves me feeling very uneasy. Such a system would be based on the assumption that children labeled autistic could not become self-supporting. By characterizing autism itself as the sole source of the problems encountered by autistic people in our culture, this would divert society's attention away from the many areas where it ought to be focused—miseducation, discrimination, ignorance, and lack of suitable accommodations. These are not the result of autism, but of socially constructed prejudice.
The practical effect of such a system would resemble the old custom of providing a dowry for a daughter so that she would not be left destitute if her husband died. In those days, it was taken for granted that a woman was not capable of supporting herself. Being an independent woman, to the extent that it was possible to be one, meant having inherited money from a husband or other male relative.
For many of us in the modern world, it's hard to imagine that there was once a time when a young girl, simply because of her gender, was thought to be inevitably destined to a lifetime of never being able to provide for herself. That idea seems absurdly primitive now. And yet, there are many people today who see nothing wrong with making the same assumption about a young autistic child. As we celebrate Independence Day here in the United States, I'd say that it is time to give that assumption a lot more critical scrutiny.
Labels: culture, disability, families with autistic children
posted by abfh at
2:58 PM
93 Comments:
This does give a lot of thought. While there certainly are those who wouldn't be able to work, also too often times the assumption is made very early on when it would be impossible to tell. I do agree there are circumstances where it is a good idea, as well as that more emphasis should be placed on making greater adaptations and in teaching skills (working with their autistic learning/thinking/perceiving styles, rather than opposing them).
I think it is in general a good idea to save up a sum of money for any kid, whether it's going to be used for college or for an emergency bill or independent living arrangements. Of course, not everyone does this, especially if you're busy trying to make the last month's rent, but saving up a fund one needn't make it specifically about autism, disability, or living arrangements, or even if they have this at the back of their mind to tell their child and set them up for low expectations. It would be helpful especially if there were some sort of government incentive for a child fund, regardless of purpose.
By
geosaru, at 5:43 PM
Every child should have a trust. Having a trust just means that your parents were capable of providing for you when your gone. It's got nothing to do with social prejudice and the fact is until society believes that it "takes a village to raise a child", autistic folks could use a little leg up. A tax free trust is like a reparation. Sometimes we look for offense where none is and that is personally destructive.
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K, at 6:21 PM
"when your gone", substitute "their" for "your". Sorry about that.
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K, at 6:22 PM
To clarify, this post is not about "offense," but about the potential for harm caused by low expectations. I agree that a government incentive for trust funds for all children, regardless of disability, would be helpful.
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abfh, at 9:24 PM
Good stuff, as always. Thanks for the linkage. :-)
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Anonymous, at 12:47 AM
As one who's trust (Henson Trust)is "in progress" with the Lawyer I'll offer up the parent POV.
It has nothing to do with discrimination and everything to do with protection from the parents POV.
In Ontario you cannot receive ODSP (disability payments) if you have more than $5000 anywhere - even under your pillow. Yet, I pass away and there's inheritance. Now what??
The Henson Trust allows the trustee to give monies to your child and pay for "disability extra's above $5000/yr" and still allow for your child to receive disability benefits.
Will my youngest son need them (my elder won't so I'm not making him up one that works in this manner)... he's 7 now... I don't know... But right now, it is necessary to do it this way. If we are both alive in 10yrs and he can live independantly we may do something different.
Trusts aren't about discrimination, they are about protection. Protection that allows for independance.
By
farmwifetwo, at 7:57 AM
Farmwifetwo: Thanks for the info. We have similar trust programs in the United States that allow the beneficiary to receive disability payments.
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abfh, at 9:09 AM
Mitchell did a piece on this subject although obviously he didn't know about this legislation. I did a response on my blog against him, and my response to his call for ALL treatments (for the kids I'm talking about) to be stopped and replaced with that money being put into trust. He's an idiot!
I quite forgot about the cultural issue you rightly talk about, ABFH. And I'll add this for your reflection. In my response to Mitchell, I called on taxpayer dollars to be used to beef up the health system and provide a flexible treatment and support structure for the kids AND for adults if required. I called for the same thing thing with education.
The trust fund idea has theoretical merit. Maybe there should be some flexibility there as well. Create it - but should the Autistic be able to self support, give him or her access to the money on a more flexible basis.
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Anonymous, at 7:19 PM
Timelord I suspect that there are rules in each State as there are in each Province on how do you qualify for Provincial support.
Unfortunately here for Social programming not only do you have to have a physical or mental "issue" (trying for PC language) you must also have financial need. Therefore the person receiving the support cannot have more than $5000 the day they turn 18 in their name.
The Henson trust technically gives the money to the trustee and it is set up so that the person receiving the trust cannot ask the trustee for the money.... Confusing?? Yes, but it's only been in existance for the last 10+ years and has survived a Supreme Court challenge so it's our only choice. There are 2 Henson trusts, the one's the parents are Trustees of, after the age of 18 and the one activated via the will when we die. We need both.
The person receiving the trust may receive up to $5000/yr from the trust and still keep their ODSP (ontario disability supports plan)supports. The trustees may also purchase other disability related items above the $5000 which includes - clothing, housing, respite, food etc. So, it's pretty vague and flexible.
I appreciate that a HFA or Aspie may wish to have control over their own funds but you have to remember that the majority of the spectrum cannot live independantly. The majority of the spectrum relies on social services. They will always needs a "trustee". If you don't have things setup to get around those rules..... then your child doesn't receive the benefits they are entitled to.
This is the only option at this time. The Fed's just put in RDSP's (registered disability support plans). You put in money, they match it and sometimes more depending on your income. I'm not happy with them yet.... need more info.
For now... we'll start with the trust.
AND with that trust... those "taxpayer dollars" are being used to support your child. Only difference is, your child is getting your dollars and the taxman isn't getting your hard earned money when you die.
S.
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farmwifetwo, at 9:01 PM
Farmwifetwo, I don't agree that "most" on the Spectrum can't manage their affairs - especially amongst the HFA's and us Aspies. Maths is a strong point that gets a mention in the DSM as I recall, and in fact with some teaching I don't see any reason why there can't be enough taught to more receptive LFA's as well.
I'm not saying every Autistic can do that of course - there does need to be trust funds for those LFA's who are unable to grasp enough math to get by.
And don't start me on the different state laws! I put up with six different lots in Australia - actually eight because one has to include the two territories, so even thinking about the different laws across 50 states scares the crap out of me!
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Anonymous, at 7:34 AM
"I don't agree that "most" on the Spectrum can't manage their affairs"
You may not agree, but it happens to be the truth for me and all the folks I know personally with AS. I, even with a PhD in economics, could not manage my own personal financial affairs without my wife. I don't posit myself as representative of all Asperger-autistic folks, but I don't know one personally in my life, and I know a few dozen from my support group, that can manage their financial affairs. Most don't even have a job that will pay the rent, and they are all folks with Asperger's Syndrome.
Farmwifetwo is correct in my estimation and personal experience about this particular subject. Though I disagree with her on many things, especially the rants she has about people who hold ND beliefs (completely clueless about what it is to be ND). However, in this area she is correct.
For me, this is where the public face of ND really goes off into non-reality based dogma to either tie-in a trust as some sort or form of "low expectations" because a child, who happens to be autistic, has a trust, or Phil, who is perpetually either unemployed or underemployed, states that most people with an ASD don't need help managing their affairs. Why is there this fear of being labeled disabled (and needing help) that scares some in the ND camp? There is no need for this. In fact, it just increases the stigma of actually having a disability.
If you don't have clinically significant executive functioning issues, you don't have AS and that is not my personal belief, its part and parcel of the diagnosis. If you have no problems with executive functioning, don't need accommodations, you don't have an ASD, period, end of story. It's ok to need help. Everyone does in their own personal circumstance. How you manage is often determined by how well you know yourself, know your limitations as well as abilities. There is hardly ever an optimum environment in every day autistic lives.
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K, at 11:42 AM
Kent, the phrase "executive functioning" is never mentioned anywhere in the diagnostic criteria. It is not part of the diagnosis, which refers to "clinically significant impairments in social, occupational, or other important areas of functioning."
That said, I disagree with the current practice of diagnosing AS on the basis of clinically significant impairments, for the same reason stated by Michelle Dawson in a comment to her most recent post. I believe that diagnosis should be based on biomarkers of some sort, rather than on subjective judgments that depend on a person's social environment.
BTW, I do not have problems managing my finances, and I was identified as autistic in the 1960s under the old criteria.
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abfh, at 12:39 PM
Trying to save for my children's education, here -- wanting to treat them equally, one is autistic and one is NT -- and what I'm looking for is tax-advantaged options with flexibility! We'd been contributing to 529s for both, but if we gamble wrong on the daughter who isn't speaking at age 5, that tax advantage turns into a tax hit if higher education is not what she needs the money for. I like the ABLE Accounts proposed legislation in that regard, even if it appears to be once again on the back burner.
On the other hand, whatever expectations we may or may not have, we'd never be able to save nearly enough for the most-disabled-case scenario... To set up a trust fund, one must have something to put into it. Sigh.
Thanks for the caution about assumptions.
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JoyMama, at 2:04 PM
"phrase "executive functioning" is never mentioned anywhere in the diagnostic criteria."
Executive function impairments in AS is well documented, even over documented, because the exact phrase isn't mentioned doesn't really matter. Its well documented (pubmed has more than 100 studies to support that its a part of what it is to be autistic). Executive functioning is part of the what makes up occupational and other areas of functioning in the DSM.
I am interested in how you were diagnosed with autism in the 60's though. Typically, a childhood diagnosis is sought by parents for very limited reasons. How did you get diagnosed with this pre-DSM diagnosis in the 60's?
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K, at 6:19 PM
Although executive functioning differences certainly do exist, I don't believe that they are always impairments. For example, a tendency to focus on a task for long periods can contribute to a successful career.
My parents took me for a psychological evaluation because they were baffled by my behavior and were looking for advice. As I'm sure you know, in those days school services were almost nonexistent and there was no benefit to be gained from an autism diagnosis. So when my parents (who tend to be suspicious of doctors in general) heard the word, their response was something like "OK, thanks, now make sure you don't put that in writing anywhere!"
As a result I don't have an official written diagnosis, but if there had been anything to gain from it, I would have had one.
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abfh, at 8:26 PM
Oddly I am going to agree with K on this.
Not all of us are in same place as you are AFBH. I am unemployed, and on SSI, my husband is the breadwinner and unfortantly our marriage is failing and their might be future when I am completely on my own.
In honesty. It's scary.
having some extra support so I won't drown in poverty sounds like a good idea to me.
But maybe I should be a real ND supporter and live without no insurance or goverment support <.<
.....
By
Bard, at 10:37 PM
Timelord and ABFH it has become an obsession of mine to prove that I can divide x/0 where x<>0. This must be done. I have to find the answer. It's been on hold because of personal problems. I am on the verge of mentally cracking. I put why on timelord's forum if anyone wants to look.
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A better future for all, at 3:32 AM
I may not be able to write to my blog for a while. Timelord knows why.
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A better future for all, at 3:33 AM
Kent - at a guess the majority of your group are not high functioning so that would have an effect on the figures that you referred to (so to speak). Besides, there is a difference between ability and actual teaching. For example, one could have a natural mathematical ability, but it couldn't be properly used because the teacher was lousy. You can't blame that situation on the ASD. That's a failing of the system - and I think you'll find that any high functioning who do have issues with their financial affairs likely had this happen to them.
I'm assuming ABFH had a good set of maths teachers at the right times. I know I did. And I am yet to meet an Aspie who is lousy at maths. And just because one can handle their financial affairs doesn't mean they can work. I cite myself as an example of this.
Just quickly on Cube Demon's commentary - guys and girls he is in very serious trouble. Once my new forum is open and I come back from an extended trip after the coming weekend - we need to rally to help him. I hope to have more details soon.
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Anonymous, at 9:06 AM
Nightstorm, to clarify, I am not arguing that everyone should be able to live without support. Many people, both autistic and non-autistic, need support for various reasons, and it should be made available to them when they need it.
My point is simply that making assumptions about young children can be unnecessarily limiting.
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abfh, at 10:29 AM
Cube Demon, you have my best wishes in dealing with whatever is going on...
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abfh, at 10:29 AM
The thing to do is to have the legislation cover contributions to any long-term care fund and not just funds for one specific type of person who might or might not need long-term care.
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VAB, at 11:57 AM
I think that trust funds are a good idea, but it all depends on the reason for it. If you're setting up a trust fund for someone out of the goodness of your heart and because you feel that they would need it, that's not such a bad reason. If the reason is low expectations, then it's not such a good thing.
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Sadderbutwisergirl, at 12:27 PM
"Kent - at a guess the majority of your group are not high functioning so that would have an effect on the figures that you referred to (so to speak)."
Their all folks with Asperger's Syndrome, which is considered by its very nature high functioning autism.
"Besides, there is a difference between ability and actual teaching. For example, one could have a natural mathematical ability, but it couldn't be properly used because the teacher was lousy. You can't blame that situation on the ASD."
I'm not blaming anything on an ASD. I'm sorry if that was not clear. I'm saying that part and parcel of having an ASD is executive functioning issues. That is part of the disability and its ok to have a disability. The ability to do something is independent of the ability to actually carry it out. Knowing how to do something does not mean you can always do it.
"I'm assuming ABFH had a good set of maths teachers at the right times. I know I did. And I am yet to meet an Aspie who is lousy at maths. "
I've met lots of AS folks that are not good at math, you need to get out more. AS folks are no better or worse at math from my experience than the general population. I happen to be excellent at math. From the simple math such as Algebra, Geometry, Trigonometry and Calculus to advanced mathematics such as fouriers, transforms and recursive formulas. However, I don't have the ability to pay a bill on time or balance a checkbook in a timely manner. Those tasks fall into my executive functioning difficulties. Let me give you another executive functioning issue dealing directly with mathematics. If given time, I can easily solve most common mathematical equations. However, put a time limit on me and I have difficulties in simply processing Algebra. Because I don't take tests very often, I find them extremely confusing and my brain turns off. Thus, I score very low on mathematical time testing. Here is where an accommodation can be helpful. If I can take a test without time limits imposed, I'm likely to be able to finish the test faster than the average person with better scores, at least on a mathematic portion.
I found a rather good explanation on executive functioning on of all places wikipedia. Here is an explanation of what executive functioning is and after reading it, I'd like someone to tell me how autistic people don't have executive functioning issues.
The executive system is a theorized cognitive system in psychology that controls and manages other cognitive processes. It is also referred to as the executive function, executive functions, supervisory attentional system, or cognitive control.
The concept is used by psychologists and neuroscientists to describe a loosely defined collection of brain processes which are responsible for planning, cognitive flexibility, abstract thinking, rule acquisition, initiating appropriate actions and inhibiting inappropriate actions, and selecting relevant sensory information.
The executive system is thought to be heavily involved in handling novel situations outside the domain of some of our 'automatic' psychological processes that could be explained by the reproduction of learned schemas or set behaviors. Psychologists Don Norman and Tim Shallice have outlined five types of situation where routine activation of behavior would not be sufficient for optimal performance:
Those that involve planning or decision making.
Those that involve error correction or troubleshooting.
Situations where responses are not well-learned or contain novel sequences of actions.
Dangerous or technically difficult situations.
Situations which require the overcoming of a strong habitual response or resisting temptation.
The executive functions are often invoked when it is necessary to override responses that may otherwise be automatically elicited by stimuli in the external environment.
You know......., lots of heat is generated by these type of posts, but very little light is given.
By
K, at 12:44 PM
VAB and Sadderbutwisergirl: I agree with both points.
Kent: Thanks for posting the explanation of what is meant by "executive functioning." Once again, I don't dispute that autistic people have executive functioning differences, and in fact I think we have quite a few of them. However, I don't believe that AS should be defined in terms of executive functioning impairments, as these differences may or may not be significant impairments, depending on each individual person's social environment.
Timelord: I am reasonably competent at math, but nowhere near Kent's level of ability. I was referring to the same thing he describes -- staying current with bill-paying and other everyday household financial tasks. I've met quite a few people who have problems with that, and most of them are not autistic.
Without getting into a discussion of high and low functioning labels (which I prefer not to use on this blog), I agree generally with Timelord's point that a support group is not a representative sample. People who attend support groups are likely to do so because they need more than the average amount of support, in one way or another.
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abfh, at 1:40 PM
"I agree generally with Timelord's point that a support group is not a representative sample."
I tend to believe the opposite. I don't think there is anything atypical about autistic people seeking support, friendship/fellowship and guidance from other autistic people. In fact, I tend to think this is the norm and more representative of those with AS than those that don't seek such fellowship. This is what a support group does. Not much different than those that seek fellowship at a church, synagogue, and temple. There are support groups for people with depression, support groups for folks with MS, deaf and blindness. Being in a support group is actually in some ways, much more representative of folks that realize they are different than others and are self actualized enough to know that no one human being is self supportive. Support groups are actually very empowering. What isn't typical are autistics that need no fellowship, friendships, guidance and a feeling of belonging that a support group gives.
For me, this idea that somehow those of us who need support or accommodations are somehow atypical isn't true ND, its a dogma of false hierarchy and Aspie supremacy beliefs. This is where harm is done to the idea of ND. ND should be about the search for self understanding, acceptance and furtherance of an atmosphere of respect.
What did you think a support group does and why would you think that it would be atypical? Those in support groups are just as representative of what its like to be autistic than any other autistic population. In fact, I'd say those in support groups are far more typical than someone that doesn't need any support or fellowship with other autistics. No one wants to be completely alone and misunderstood their entire lives. In some ways, groups like Aut Advo, ASAN discussion and even the Autism Hub to a small degree are support groups, virtual support groups. But, these groups don't do much good if you need fellowship locally.
Autreat is basically a support group for like thinking autistics. However, its come to my attention that Autreat is a bit exclusive and not welcoming of certain types of autistics which to me completely destroys their goal of autistic empowerment. The fact that they rejected certain autistics from attending (if true, I only know by hearsay) then anyone that claims to be for autistic empowerment should not attend Autreat until they open their doors to all autistics.
This type of thinking (autistic's problems are just social prejudice) is what really drives a nail into ND's wider acceptance because it flies in the face of the reality for most of us. I write this as someone that supports ND. However, I can't support this labeling as some autistics being atypical for simply seeking fellowship and support from other autistics. I think ND can be better than that, otherwise, I'd just give up and come out against it if that is what it means. ND, like all beliefs, can evolve and not automatically reject all of its critics points. Some of the criticism is legitimate in my opinion. Perhaps I'll get some feedback in a video from my support group to see if they feel atypical for seeking support and fellowship. I don't feel atypical from the larger AS population nor do I think my experiences are atypical. I think they are quite the norm. I'd extend the same invitation to you as I did to Joseph. Go to a local support group in your area. You might come back from it with a new understanding.
By
K, at 6:39 PM
"If you're setting up a trust fund for someone out of the goodness of your heart and because you feel that they would need it, that's not such a bad reason. If the reason is low expectations, then it's not such a good thing."
Sadderbutwisergirl, I can assure you that no parent from my experience voluntarily has a low expectation for their child. Its quite the opposite. This state of mind does not exist for parents, at least not for those that love their children. It's naive to suggest otherwise. The only parents who set up trusts are those that have the means and that love their children enough to sacrifice their own personal happiness by foregoing and limiting their own lives and opportunities by leaving their net worth behind for their children. If the parents had the means but didn't love and care for their children, they would never spend the money or time setting up a special needs trust.
That type of thinking is why some parents that could be natural allies to autistic people believe that autistic self advocates are "just" attacking parents. Though it should be the responsibility of parents to do all they can after their death to help their child, the sad reality is that not all parents are willing to do that. Some parents that wish they could, simply can't because they don't have the means. But its quite ridiculous to think they do it simply because they have low expectations. Neurotypical kids with trusts aren't subject to this line of thinking (that they have a trust because their parents had a low expectation of them as capable human beings or that they have a trust simply because they are neurotypical). I'm sorry, but that set me off a bit because I have a trust for my son set up, and it has nothing whatsoever to do with any of this line of thinking but now I suppose because he has autistic disorder, some may think, may think, that his autism may be the only reason he has a trust.
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K, at 6:53 PM
I have in the past attended support groups, of various types, and I don't find them comparable to churches or online interest groups. People attend support groups specifically because they are looking for support with their problems, whereas churchgoers are looking more generally for fellowship, and members of online interest groups want to discuss their interests. It's not the same thing.
While I agree with your main point that there is nothing atypical about autistic people seeking support, friendship/fellowship and guidance from other autistic people -- just as there is nothing atypical about any other minority group doing so -- support groups are not the only places where friendship and guidance can be found.
If you know what percentage of autistics are members of support groups, feel free to post the figure. I'm curious.
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abfh, at 7:01 PM
"People attend support groups specifically because they are looking for support with their problems"
Why do you blog? Do you not use your blog for social discourse to discuss problems you see with the world? What's the difference between what you are doing and what a support group does?
"whereas churchgoers are looking more generally for fellowship"
Pick a church, any church of your choosing and I will show you they have missions/groups that help members with issues affecting the members lives.
"and members of online interest groups want to discuss their interests. It's not the same thing."
LOL, you definitely need to attend an autistic support group if you think they don't spend time talking about their interests. Last week I listened to a guy talking about his interest in Cathode Ray Tubes for 15 minutes, its all he ever talks about. I learned a lot.
"If you know what percentage of autistics are members of support groups, feel free to post the figure. I'm curious."
Autistic support groups tend to be very closed to casual observers so it would be difficult for such a study to be conducted I would think. ABFH- " I agree generally with Timelord's point that a support group is not a representative sample. " Do you have a study that shows those of us who attend support groups are atypical and not a good sample of the autistic population?
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K, at 7:42 PM
"support groups are not the only places where friendship and guidance can be found."
Do you not think Aut Advo, ASANDiscussion, AutismHub and Autreat are not forms of support groups? What makes them different?
Here is a definition of support groups:
A group of people who share a similar problem or concern. The people in the group help one another by sharing experiences, knowledge, and information.
Let me ask you a question that might seem uncomfortable but readers of this thread may be thinking. Are you uncomfortable with autistics like me? Autistics that acknowledge that they have executive function issues and insist they are part and parcel of what it is to be autistic; that admit they aren't a "shiney" aspie; or do you think that by speaking of such things like I am that I am feeding into some sort of negative stereotype of autistic people or "airing" some sort of dirty laundry? Can I admit my disability and still demand equal footing, accommodations, rights and inclusions and still be considered a "typical" AS-autistic? Is there something non-ND with anything I've written in your opinion?
Why would you think that its possible that there could be underlying low expectations held by parents because they gave their autistic child a trust? Why would you think that someone with an autistic disorder that attends a support group would be atypical?
This discussion we are having, and a civil one, is typical of the type of discussion you would find in my support group. We hash things out, try to better understand why it is we think the way we do. We try to understand what it means to be an AS-autistic. It's helpful. I always leave knowing myself, my soul and my thoughts better after attending. Why wouldn't anyone want to know themselves better? I can say I've become a much more productive person and autistic from attending my support group. I enjoy learning about other people's interests or sharing common interests like you do on the Hub or Aut Advo or ASANdiscussion.
Can I politely suggest, with the most earnest respect, that I think you may carry some prejudice against some autistics that perhaps your not even aware of? I ask in all kindness and caring. I ask because that is what I feel like. I'm feeling a bit less empowered by the suggestion that me and my friends are somehow atypical AS folks.
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K, at 8:12 PM
Kent, you're assuming that all support groups serve the same purpose lock stock and barrel. If a support group ran like that, many would fail because of a lack of flexibility. Your group of Aspies must be at the poor functioning end (as in they have it rather badly). The majority of Aspies I know are at the other end - much like myself.
I found it interesting that you can't function with a time limit and prefer to have none. I'm the opposite. And with bill paying and so forth - that reflects on a lack of a functioning routine. I have a stringent budget which I have created in Excel. It works very well, and it has evoloved since I first did it - and that was even before I was DXed with Aspergers.
Executive functioning tends to be okay as long as you have a routine that works. That's the trick. That's why I hate the NT world - because they don't like routine, hence the problems they create for us because we need it.
And a quick point back on support groups. You might have a group that supports a wide range of interests. That's fine. But I'll bet you that if you went to another support group that had a similar purpose in a different area, and tried to behave the same way you'd be a disruption. This is a key issue that I think a lot of people are struggling to understand. The assumption that everyone is exactly the same. There's no such thing as a "typical" support group, just like there's no such thing as normal. Every support group - even on the same base subject - is atypical simply because of the content. Hence the difference between your experience with Aspies and mine. And it's a vast difference.
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Anonymous, at 9:39 PM
"you're assuming that all support groups serve the same purpose lock stock and barrel."
Phil, I don't think I was assuming anything. Perhaps you can point me to where I made a declarative statement about all support groups. I was actually doing the opposite.
"Your group of Aspies must be at the poor functioning end (as in they have it rather badly)."
I don't consider myself under your characterization nor my friends. I think your making an assumption. I feel we are typical, unless I'm to believe that we are all a bunch of losers which is the feeling I'm getting from your assumptive statement.
"I'm the opposite. And with bill paying and so forth - that reflects on a lack of a functioning routine. I have a stringent budget which I have created in Excel."
Well, I can speak only about myself here. I have a monthly budgeted expenses of about $30,000 including capital gains considerations and tax strategy formulas. There is very little routine in my budget every month. But, even when I was a lowly college student eating beans and spaghetti I had a hard time. Routines can be an accommodation around executive functioning issue. Routines in fact are the prescribed method for dealing with such things and example of how to overcome executive functioning problems I've been addressing.
"But I'll bet you that if you went to another support group that had a similar purpose in a different area, and tried to behave the same way you'd be a disruption. " That's certainly possible. I only know what I've experienced which does not quite fit with the "box" assumed earlier. Thus, why its important to embrace all autistics and not relegate into groups of typical and atypical.
"Hence the difference between your experience with Aspies and mine. And it's a vast difference."
My only experience is the one I have in real life and the one "online". The online version and the real life version are very different, like your experience. However, no one in my real life experience lacks a formal diagnosis, unlike my online experience. I think that could possibly be a contributing factor. Just my humble opinion and not meant to distract from the current discussion.
By
K, at 10:01 PM
I blog to discuss both problems and positive developments that I see in the world, and I usually don't discuss my personal problems; that's a rather different mindset. Granted, there are some webrings and lists that are basically online support groups. I've always thought of Autism Hub as being more like a diversity seminar, though.
On reflection, I'll concede that my previous comment about support groups was poorly stated. I wrote, "People who attend support groups are likely to do so because they need more than the average amount of support..." But I should have said that they perceive themselves as needing more support, which is not necessarily the same thing.
I'll give you a historical example to illustrate what I'm trying to say here. In the 1960s, there were support groups for depressed housewives, and there were also feminist consciousness-raising groups. The latter approach made women more aware of structural problems in society and empowered them to take action to bring about long-term changes. The support-group approach placed the burden on each individual woman to do a better job of conforming to society's expectations.
I think there's a looping effect that occurs when people attribute their problems chiefly to their own inadequacies. They become anxious and expect to do poorly in situations where they feel inadequate, which in turn causes worse performance, which leads to more anxiety and lower expectations, and so on.
To clarify further, I did not mean to suggest that autistics who attend support groups are neurologically different from those who do not.
By
abfh, at 12:24 AM
Do you have a study that shows those of us who attend support groups are atypical and not a good sample of the autistic population?
Kent, that's the quote from you that read to me that you were in effect saying that all support groups serve the same root purpose lock stock and barrel. Along with this;
A group of people who share a similar problem or concern. The people in the group help one another by sharing experiences, knowledge, and information.
See where I'm going here. I don't see the opposite being said at all.
Also, I take issue with you trying to define typical. That's no different to defining normal - there's no such thing. If we define typical it will restrict the flexibility that is needed to cover all bases across the Spectrum. No human being on the face of this planet is a loser based on their neurological identity (ie they're on the Spectrum). Losers are people who do stupid things with what they have, and ignore it when they are told without a decent explanation. I seriously doubt you or any of your group fit that definition any more than most of us on this side of the activism fence.
One more thing - I'd be interested to know how many Spectrum people you have met IRL. In general the difference between IRL and online is something we have in common. Like you, everyone I know in real life has a formal DX. Online - well I'm not going to judge on who has or who hasn't unless they have said so. Except in the odd case (like Best for instance - I highly suspect he's a closet Aspie).
I want to touch on ABFH's second last paragraph. This is a great example of those on the Spectrum who are most likely to end up wanting to be cured. That's why support structures are so important - to put a stop to this situation that frankly I call abuse by the NT world. I know that's not a popular view with those on the anti cure side of the activism fence, but it's my view and I stand by it.
By
Anonymous, at 8:37 AM
Timelord, I wouldn't go quite as far as to call it abuse because the harm is unintentional and, in many cases, is not even noticed. It is a form of cultural oppression, however, and I agree with you that creating better and more flexible support structures would go a long way toward addressing the problem.
I'll write another post discussing this issue in more detail.
By
abfh, at 12:15 PM
And I am yet to meet an Aspie who is lousy at maths.
Congrauations you met one. I have LD in mathmatics It's amazing I can still multiply simple numbers. I can divide simple problems too, but at after that I am done.
I also have an incredible imagination, eact of my drawings has a story behind it, I role play extensivly I love picking out patterns in colors and use it in color theory.
Any other aspie sterotypes I can dispell.
By
Bard, at 12:23 PM
Part 1
"Do you have a study that shows those of us who attend support groups are atypical and not a good sample of the autistic population?
Kent, that's the quote from you that read to me that you were in effect saying that all support groups serve the same root purpose lock stock and barrel."
Phil, are you having processing issues with reading the thread? That quote of mine was asking the same question that ABFH asked me, namely if I had some sort of study that would demonstrate that autistics in support groups are NOT atypical. It didn't address at all the question of what support groups are or are not.
Your claiming that I wrote that all support groups are the same and offered this as evidence:
"Along with this;
A group of people who share a similar problem or concern. The people in the group help one another by sharing experiences, knowledge, and information.
See where I'm going here."
Nope, I have no idea where your going. If you go back to what I wrote I stated that "Here is a definition of support groups" I didn't write here is THE definition, I wrote here is A definition. By using the A instead of THE naturally implies one of a number of definitions, not a singular definition.
"Also, I take issue with you trying to define typical. That's no different to defining normal - there's no such thing."
I didn't define typical, YOU and ABFH started that line of reasoning : "I agree generally with Timelord's point that a support group is not a representative sample. " What you guys were saying is that me and my fellow members were atypical of the AS population. I never initiated that line of reasoning, you guys brought it into the discussion.
"Losers are people who do stupid things with what they have, and ignore it when they are told without a decent explanation."
I'd be careful with that because you are clearly stating that one is a loser if they are unable to give a "proper" or correct response to a stimulus. That is at the heart of autism, namely that autistics give atypical responses to the norm responses to stimulus. By your definition I would be a loser because I didn't perform based on "having" information to perform "correctly", as if this was a choice of mine. My mathematics test example is a good example of not being able to perform despite knowing the answer. It certainly goes to the entire idea of executive functioning and why many of us are subject to being thought mentally retarded. What you wrote is clearly an example of why I left the Autism Hub. That's not an accusation against all members, its just I felt a bit uncomfortable with the ideas that are very well crystallized on this thread. I have this issue with being in a "community or group" that would espouse such things as calling autistics that have significant challenges atypical, even inadvertently dismissing challenges like executive functioning as something that isn't intrinsict to AS. This argument, on the Hub, is coming primarily from "autistics" that don't have a formal diagnosis and leads me to question the entire idea of a web destination that would only welcome autistics with a pro-neurodiversity opinion. While I don't particularly care for some autistics that have pro-cure positions, especially the more irresponsible and reactionary ones, I would say any site that claims they are about empowering autistic people through acceptance has a hypocritical standard by excluding the aforementioned autistics. I'll say this, if my son, who is being raised in a very autistic friendly and pro-empowerment household decides one day he wants a cure and wants to talk about it, I would support him because he is my son. I sure wouldn't want him excluded from any group. That is essentially what the Hub would do. They would exclude my son because he wasn't the correct type of autistic. That's not empowerment, that's dogma and demagoguery.
By
k, at 2:12 PM
Part 2
There is an underlying shame associated with being autistic by some. What I mean by this is that while there is all this talk of acceptance, there is an underlying tone exhibited by statements like "not a representative sample" that seems to convey a sense of shame of some common autistic qualities. There seems to be only value in how much an autistic can be NT in certain aspects. For example:
"Kent, the phrase "executive functioning" is never mentioned anywhere in the diagnostic criteria. It is not part of the diagnosis, which refers to "clinically significant impairments in social, occupational, or other important areas of functioning."
Followed by: "Kent: Thanks for posting the explanation of what is meant by "executive functioning." Once again, I don't dispute that autistic people have executive functioning differences, and in fact I think we have quite a few of them. However, I don't believe that AS should be defined in terms of executive functioning impairments, as these differences may or may not be significant impairments, depending on each individual person's social environment."
Why would anyone want to distance themselves from the core of what it is to be autistic? Acknowledging one's limitations shouldn't limit what one can do and do well. Because the average NT person can't be an NBA player, are they less of an NT by acknowledging their lack of certain skills? Is an autistic somehow less typical of other autistics because he admits he/she has "deficits"? Isn't it empowering to say yes, I'm autistic, I have deficits but so do you! You define me by your deficits but I define me based on what I can do while acknowledging that I need help, like you, in some areas. Why this overvaluing of normality and distancing from core autism?
By
K, at 2:13 PM
"I agree with you that creating better and more flexible support structures would go a long way toward addressing the problem."
So long as one doesn't claim that if you attend an autistic support group or need support or have executive functioning issues your typical of being an AS-autistic?
Sorry to be snarky. I just can't help myself :-) I know that's not what you mean but there is a cognitive dissonance between advocating for support structures and then saying those that go to support groups or need support in certain areas aren't "a representative sample" as if there is something unusual or out of the "AS norm" with you.
By
K, at 2:39 PM
To clarify further, I did not mean to suggest that autistics who attend support groups are neurologically different from those who do not.
Perhaps, but aren’t you making some very uninformed conclusions about a person’s individual motivations and needs when you write:
“On reflection, I'll concede that my previous comment about support groups was poorly stated. I wrote, "People who attend support groups are likely to do so because they need more than the average amount of support..." But I should have said that they perceive themselves as needing more support, which is not necessarily the same thing.”
What do you mean they need more than the “average” amount of support? What is the average amount of support AS-autistics need? That seems to be a value judgment on your part. Don’t you think perhaps it would be more accurate to make such judgments after you have talked to the individual about their internal motivations before making assumptions about their circumstances? If your not making a value assessment of their neurology, why would you assess they view themselves as needing more or less support? Don’t you need to talk to someone before you assume something about them? Isn’t that what ND should be? To look beyond the surface to find what is really motivating them? I don’t see how one can do that if they make assumptions.
This part you wrote really troubles me:
“I'll give you a historical example to illustrate what I'm trying to say here. In the 1960s, there were support groups for depressed housewives, and there were also feminist consciousness-raising groups. The latter approach made women more aware of structural problems in society and empowered them to take action to bring about long-term changes. The support-group approach placed the burden on each individual woman to do a better job of conforming to society's expectations. I think there's a looping effect that occurs when people attribute their problems chiefly to their own inadequacies.”
Why would you think that an AS-autistic support group would focus on blaming their own deficits on themselves rather than taking the approach that yes, I have these issues that aren’t accommodated, now, how do focus on improving my own life? Do you think that AS-autistics have as much power as women asserting feministic values in the 1960’s? If so, you are poorly mistaken. The stigma attached to having a “mental” disorder is far beyond the “stigma” associated with being female I wouldn’t know where to begin to even describe this to you. Women were not in the position of just trying to survive like most autistic people without a support system are doing. You need to find a different model than that one.
By
K, at 3:03 PM
I wouldn't consider a sample that consisted entirely of autistics who were not support group members to be representative of the autistic population, either.
"Representative sample" is a specific statistical term (here's a definition). It does not imply any value judgment and does not mean that any particular subgroup is more typical than another.
As for the treatment of women in the 1960s, you may want to do some more reading on that issue. Women were not protected by federal civil rights laws until 1964, and many jurisdictions did not even have laws against domestic violence.
By
abfh, at 3:10 PM
K
I really would like to talk to you privetly I think we have a lot in common. Do you have IM or E-mail you could reach me at
I'm SoloNightStorm@hotmail.com thats my e-mail. I would like to talk to you
By
Bard, at 3:21 PM
"As for the treatment of women in the 1960s, you may want to do some more reading on that issue. Women were not protected by federal civil rights laws until 1964, and many jurisdictions did not even have laws against domestic violence."
I think its quite evident that women have held important positions throughout history and have either had power or shared power. Have they been treated equally through history? No. But does the history of women compare to the history of folks with developmental disabilities? Certainly not. The comparison isn't even in the same universe.
Hi Nightstorm, I'll email you tonight.
By
K, at 6:04 PM
The vast, vast majority of women throughout history were some man's property. But I'll drop the issue, as I think it's generally unproductive to compare the extent to which various groups have been oppressed.
By
abfh, at 6:50 PM
Kent, your detailed answer is just a bit beyond me time wise because I'm about to head off on a project trip. I'll just say that you're the one missing my point because I've been able to teach myself how to read between the lines - something that you are unable to do. That's not a bad thing. That's just a difference between us. That's why I need to answer you in detail and I don't have the time to do that at present.
Monday at the earliest.
By
Anonymous, at 7:43 PM
"something that you are unable to do."
I look forward to reading more about what I'm unable to do when you get around to replying.
By
K, at 8:01 PM
The vast, vast majority of women throughout history were some man's property. But I'll drop the issue, as I think it's generally unproductive to compare the extent to which various groups have been oppressed.
I can under you point ABFH, I applaud your effort, but really you're comparing Apples to Watermelon. Women have been oppressed and abused for years and treated like livestock and as someone that idenifies as a woman (partly since I am bigender) I can understand the spirit of the post.
However women in many socities were not not always treated poorly, in the Dinka culture of Africa, women are desired for they brought weath from doweries. In the so called "brutal" viking culture, women were allowed to divorce their husbands, use weponds, own property, there is even stories of women being literate and skalds (of couse being literate in the viking world is uncommon)
Indivuals with Developmental Disablities, were given no such respect in any when I did some anthropological study in diffrent ancient cultures (mostly for Rping my chartacter Tikaani who is on the blue/purple end of the spectrum) most indivuals were just simply left to die in the woods or drowned or turned into thralls. The stories of "changelings" and "feral children" are evidence that this was common in many cultures even the most "civilized" just got rid of us. At least woment in many cultures had value in produced heirs and children and weath.
What use is child who can't talk?
both minorites are heavely abused and have stigma, but in my perception the cultural view of a women is less stigmatizing then that of and autist. If in the USA if you killed a child because it was a girl you will face cruel and unspeakable ostrization and shame. If you child a child with autism, you get punished but you also get sympathy and even a lesser sentance.
there is no way to compare to diffrent civil rights moments. I believe it's better to compare the Autism rights with Deaf Rights then with women's rights. At least both groups have more in common with history and having simliar stigmas than women.
though that is just my two cents, I'll drop the subject.
By
Bard, at 9:26 PM
Kent said:
Autreat is basically a support group for like thinking autistics. However, its come to my attention that Autreat is a bit exclusive and not welcoming of certain types of autistics which to me completely destroys their goal of autistic empowerment. The fact that they rejected certain autistics from attending (if true, I only know by hearsay) then anyone that claims to be for autistic empowerment should not attend Autreat until they open their doors to all autistics.
Kent, your sources are incorrect. But it's not surprising that you believe it, because you've been on this jag since at least last October. This whole "NDs are Aspie
Supremacists, and don't welcome auties", issue of yours is getting old, as you and I have discussed it on Neurodiversity, Natural Variations, ASAN, and you've left me hanging every time, not responding to what I tried to say.
You're really wrong about Autreat,
though I can't prove it as I'm not on the planning committee, and have no idea who you're saying was "rejected". You won't find anyone on ANI spouting Aspie Supremacist views, such ideas would firmly and swiftly put down.
What you may be misunderstanding is that anyone who needs personal care, (and usually has some sort of Home Health Aide), would need to bring a support person with them to Autreat, because Autreat cannot provide that level of care/help for them. Also, Autreat's insurance company would not cover them at all if they wanted to provide such personal care, would not want to take on liability in case something happened. There ARE people who come and provide their own support person, and that person pays only about half the normal registration fee.
I seriously doubt that anyone would be REJECTED, and not allowed to attend Autreat, and certainly not because they're the "wrong kind of autistic".
I've admitted when I was wrong before, Kent. Your turn.
By
Clay, at 12:37 AM
Hi Clay,
I could be wrong but if true, it didn't have to do with an Aide. According to the email, this person was rejected because she "would make some attendees "uncomfortable" based on blog posts she had written. I know this person, she has been a good friend to me. Here is the email she allegedly received:
From: Jim Sinclair
> To: (Name removed)
> Subject: Re: , Autreat, Housing, Total Costs, Reqesting Original Concerns Be Addre
> CC: (name removed)
>
> (name removed),
>
> It is the decision of the Autreat Planning Committee that your
> attendance at Autreat would constitute an unacceptable threat to other
> attendees' peaceful enjoyment of Autreat. Therefore, I regret to have
> to inform you that you will not be permitted to register.
>
> This decision has nothing whatsoever to do with Amanda, or Kathleen,
> Kassiane, Camille, or any other person with whom you may be in
> conflict. I don't even know for sure if any of those people are going
> to attend Autreat this year. Even if we knew for sure that none of
> them would be there, we would still consider your attendance to
> present an unacceptable threat to the peaceful enjoyment of the event.
>
> This decision has been made on the basis of your extensive history of
> extremely disruptive and aggressive behavior which we were able to
> find on many public blog posts. Based on your own writings, we are
> concerned about the safety of other people at Autreat in the event you
> should attend and become angry with someone or something.
>
> This decision by the Autreat Planning Committee is final.
>
> Jim Sinclair
> Coordinator, Autism Network International
>
> Cc: Autreat Planning Committee
By
K, at 7:14 AM
Kent,
From what you quote, Autreat has not excluded "certain types of autistics", but a specific person who has an extensive history of disruptive and aggressive behavior. I don't even know who that person is, but you just can't claim that this is discrimination against "low-functioning autistics" or any certain "type" of person, based on disability. Anyone, regardless of disability, or non-autistic, who has engaged in violence or credible threats of violence, would not be welcome at Autreat, and I think that's a very wise precaution. I'd hate to think of the possibility of anyone using that venue to "settle internet grudges" IRL.
By
Clay, at 9:22 AM
Part 1
"From what you quote, Autreat has not excluded "certain types of autistics", but a specific person who has an extensive history of disruptive and aggressive behavior. I don't even know who that person is, but you just can't claim that this is discrimination against "low-functioning autistics" or any certain "type" of person, based on disability."
Clay, the person in question is someone I know and have known for a few years. She is very kind and trusting, barely ambulatory, and "severely" autistic. She has been most kind to me in all the time I've known her and has been especially helpful to me.
What Mr. Sinclair wrote was referring to
"this decision has been made on the basis of your extensive history of extremely disruptive and aggressive behavior which we were able to find on many public blog posts."
No where does he mention that these blog posts contained what you read in his statement and then assumed when you wrote:
"who has engaged in violence or credible threats of violence, would not be welcome at Autreat, "
If that were the case, namely that this woman engaged in threats of violence, then I too would not support her attendance. I hope you know enough about me to believe me when I say I wouldn't support that.
However, I think I know her well enough and I'm familiar enough with her complaints through hundreds of personal conversations with her that she would never threaten anyone with violence. She spent a large chunk of her life exposed to violence in developmental disability centers. Moreover, Sinclair isn't claiming she has done this. What he is claiming is that she engaged in aggressive and disruptive behavior on some blog posts. By aggressive, I believe she was insistent and a strong advocate for her beliefs. By disruptive I think he means she challenged someone's beliefs in an inappropriate (non-social language) means. That would certainly be consistent with how she communicates both publicly and at times privately. However, what is troubling for me is that Mr. Sinclair just didn't like what she had to say or the accusations she was making. Assuming no threats of violence were made, what other reason would there be? Because her method of communication is disruptive and aggressive? Well, that is typical for many folks with an ASD. It is quite common. You have been characterized as such by others (i.e. disruptive and aggressive.) Michelle Dawson has as well and I even remember her and Ari Ne'eman getting into a long spat on the Autism Hub Discussion list over how Ari characterized some of Michelle's statements as being something like "aggressive". So have I, so has a lot of folks on the spectrum. In fact, its well documented that this is part of the "significant impairment" in executive functioning and communication for some folks with an ASD. This type of autistic communication (not all autistics have this form but enough do I think to make it quite common) is a reason why so many children are not placed in mainstream settings, why adults find it difficult to either get a job or maintain employment. I can't count the times someone has claimed my communication style is sort of "assholish". You referred earlier to my conversation over at Joseph's blog. Well if you remember, Joseph characterized me as being an asshole there. Its quite common I think.
By
K, at 1:33 PM
Part 2
Now, since this email is public, and if people insist on assuming some threat of violence was the catalyst for this person's rejection, I'd say that Mr. Sinclair has a responsibility to prove or disprove your characterization of his words. Its very troubling to me that Autreat would reject an autistic's outreach to come to a community that is opposed to their viewpoint. This woman spent years being abused in developmental disability sanitoriums. I think it took a lot of courage for her to come out. I think, no I know, that she is beginning to develop some self help and self advocacy qualities that I'm sure she wish she had had years ago. Unlike me, this woman has been denied all her life the ability to get a job, the ability to get an education or to live independently. She doesn't have AS, but autistic disorder. She feels a bit differently about things because of her experiences. She isn't necessarily anti-ND, but her experience with folks in ND have made her a bit suspicious of some of the motives of folks. I happen to share in these suspicions but that is neither here nor there.
I can tell you this person has given me great personal strength and encouragement when I have been depressed over the treatment of my son, whom happens to share a lot of qualities with her. She has encouraged me and given me strength when I have felt all was lost and I couldn't muster the energy to continue to fight. In conversations that will never be public, she has been in some ways a mentor for me in understanding what I must do to protect my son. You see, while I have AS, my son has AD. We share lots of commonality, but he has challenges at this age I never did. She has told me what to look out for what to guard against and how to be a better advocate for him. She could teach some of those at Autreat a thing or too, let me tell ya'. But you know, this side of her isn't exposed to the public because she doesn't understand how to operate in "political" settings or write with social niceties, which apparently is a condition for acceptance to Autreat.
By
K, at 1:34 PM
Part 3
"Kent, your sources are incorrect. But it's not surprising that you believe it, because you've been on this jag since at least last October. This whole "NDs are Aspie Supremacists, and don't welcome auties", issue of yours is getting old"
Clay, this may be tiresome to you, but have you thought that perhaps I'm in a position to see things from an angle you are not or I may be privy to more private information than you are about the characters involved (e.g. Autreat)? Firstly, let me correct one of your perceptions. I'm not saying all of ND's are Aspie Supremacists. I consider myself ND and most certainly not an Aspie supremacist. However, I object to some of what I read from the self diagnosed, Asperger community and the science focused writers in the ND community. I object at times because I pick up on subtle patterns of discrimination against Autistic Disorder-Autistics as well as diagnosed AS-autistics. There are subtle hints of atypicality claims whenever an autistic does something a bit too stereotypical or autistic. Sometimes its not even subtle. Sometimes its blatant like "People who attend support groups are likely to do so because they need more than the average amount of support..." But I should have said that they perceive themselves as needing more support, " or "I'm glad I'm not one of those people" which came from a comment on the Autism Hub Discussion group (not ABFH) about autistic folks with mental retardation. I guess I'm sensitive to some of this stuff because it can profoundly impact not only the lives of autistics like me but more importantly (for me personally) autistic folks like my son.
It would be easy to solve this issue with Autreat and your assumption. Jim Sinclair should either prove what you assume to be the case or disprove it. He should explain what he meant by aggressive and disruptive. The email is public now. If he can demonstrate what you believe to be correct, I will admit my error and you can rightly claim "Kent, your sources are incorrect. But it's not surprising that you believe it, because you've been on this jag since at least last October." If what he wrote is what I believe he meant, then Autreat should answer why they would reject a severely autistic woman's quite common autistic communication style.
By
K, at 1:34 PM
Part 4
I suspect that I wouldn't be wanted at Autreat either. I'll test that assumption next year as I plan to register and bring my son and wife. I'll also bring some folks from my support group as well if I can convince them to come.
I believe an autism "retreat" by and for autistic people should be open to all autistic people, even if I don't agree with some or even all of them. Much like the NAACP is open to all folks and welcoming of all persuasions of African Americans, no matter their politics. Autistic folks of all persuasions share in rejection from the larger society. They should not expect or accept rejection from a group claiming to be for and by autistic people. That's the only "jag" I'm on. Inclusion and acceptance for all.
By
K, at 1:53 PM
Kent,
Since I don't even know for sure who you're talking about, I'm really not able to comment on any of your 4-part reply here. I can only repeat that I wouldn't want to attend an Autreat if it were likely that someone was planning to come to settle an old score.
You have been characterized as such by others (i.e. disruptive and aggressive.)
Who me? Then let me use this opportunity to disabuse anyone of that impression. -
First, I'm a wag; if I think it's funny, I'll say it. I wouldn't actually give Mitchell a "swirly", that just sounds cruel, and likely someone could actually get hurt. (Might be funny to "pants" him, though) ;-)
Second, I'm not one to just sit on my hands when I see someone being unfairly criticized or bullied. I've gotten into flame wars you know nothing about, just from trying to defend someone. I'm not likely to change that.
Third, I'll reiterate that I identify as part of the "autistic community", (defined as autistics AND our allies), and I don't identify as part of the "autism community", which apparently includes Lenny Schafer,
Sabrina Freeman, Jenny McCarthy, David Kirby, Kim Stagliano, all those "suffering" parents, quacks, clinicians, professors and lawyers who make a fine living from "advocating" against autism, and the entire freakin' Canadian government, I guess; all those who see autism as a disease, or a problem to be solved. To me, that's not a "community" but a riot scene. I don't include such "enemies" in MY community.
Lastly, I believe that autism, in any shape, form, label or degree, IS a disability. I AM DISABLED, my parents always wondered what the fuck was wrong with me, but never had a label for it. Since I was 2 years old, my father never picked me up, or hugged me, anything like that, because he thought that would encourage me to be gay. He told my mother that she was making a "sissy" out of me whenever she was inclined to be loving or kind or understanding of me. Yeah, and then he left, and married someone else, and we REALLY got further apart. He had keen powers of observation, he was right, I WAS different.
Don't call ME a "shiny Aspie". I get about 10 G per yr on SS, and I'm fine and dandy with it. Finally have the "safety net" I always needed, and don't really Have to deal with anyone. Yup. I'm disabled, I just don't usually whine about it.
By
Clay, at 3:54 PM
Hi Clay,
I'm not sure if anything you just wrote was meant to address my points, but as usual your wit entertained me.
By
K, at 4:17 PM
Glad you were entertained. BTW, all the credit reporting agencies say that I've never missed a payment, or even been late paying. It's not any special talent on my part, just that I'm too damned cheap to pay late fees! I don't like paying, but getting nothing in return. I used to have difficulty balancing my check book, making errors in addition, as I'm terrible at math. My only forte is English, but never found a way to make money with it.
By
Clay, at 4:57 PM
First of all, Autreat is not a "support group." It's a community gathering, sharing features of both a conference and a retreat. People coming to Autreat in the belief that they have a "problem" for which they need "support" may have a disappointing experience. Sure, there are wonderful instances of mutual peer support that may occur spontaneously. But by and large, people come to Autreat to celebrate autistic being, not to give or receive help with personal problems.
Second, Kent wrote:
Jim Sinclair should either prove what you assume to be the case or disprove it. He should explain what he meant by aggressive and disruptive. The email is public now. If he can demonstrate what you believe to be correct, I will admit my error and you can rightly claim "Kent, your sources are incorrect. But it's not surprising that you believe it, because you've been on this jag since at least last October." If what he wrote is what I believe he meant, then Autreat should answer why they would reject a severely autistic woman's quite common autistic communication style.
I expect that anyone with even minimal familiarity with professional standards of conduct will understand that we're not going to publicly discuss specific information about specific individuals. I will state categorically that no one has ever been excluded from Autreat based on "type of autism," "autistic communication style," or political opinions. People have been excluded from Autreat based on documented concerns about dangerous criminal behavior. In the instance you're referring to, Autreat policies were scrupulously followed, and included a consultation with the National Center for Victims of Crime.
Third, anyone wanting to know what the relevant Autreat policies are can find them at
http://www.autreat.com/Policies.html
Jim Sinclair
Coordinator, Autism Network International
By
J8, at 5:25 PM
Part 1
"First of all, Autreat is not a "support group." It's a community gathering, sharing features of both a conference and a retreat. People coming to Autreat in the belief that they have a "problem" for which they need "support" may have a disappointing experience."
Well that's interesting Jim. Based on the definition I gave, namely: "A group of people who share a similar problem or concern. The people in the group help one another by sharing experiences, knowledge, and information."
A perusal of Autreat's website states that Autreat is "Autreat focuses on positive living with autism," and further "Autreat is an opportunity for autistic people and those with related developmental differences, our friends, and supporters to come together, discover and explore autistic connections, and develop advocacy skills, all in an autistic-friendly environment." These statements would seem to support several elements of the support group definition I gave above namely; 1. a group coming together for a common concern; 2. sharing experiences (i.e. supporters to come together, discover and explore autistic connections; and 3. information (via workshops).
Additionally, if Autreat isn't a FORM of a support group, why does Autreat have this definition for its workshops: "Autreat features a lineup of workshops on a variety of subjects of interest to the Autistic community, including both advocacy-related topics and practical daily living concerns." What is meant by practical daily living concerns? Again, I refer back to the definition I gave: ""A group of people who share a similar problem or concern. The people in the group help one another by sharing experiences, knowledge, and information." If you can explain these differences that would be helpful to me to understand why Autreat is different.
Some of the "problems" as you put in quotes which Autreat has had formal workshops on in the past are: "Autism and Emotions: Some Thoughts About Feelings" ; "How high is the 'glass ceiling' for us?: Learning from some examples of struggles of autistic people in Japan" ; "Making Life Easier with Visual and Auditory Aids" "Making connections: How and why" ; "Developing Leisure Skills and Promoting Social Skills for Teens Through Assistive Technology" ; "Making Employment Fit: Accommodations and other dirty words". These workshops seem very similar to my support group topics. Subjects about support and empowerment were identified that were believed I assume to be of interest to attendees. Autreat is certainly your forte, but I'm unsure as to why you think these topics would be different than what occurs in a support group or how it is so much different from the definition I offered: "A group of people who share a similar problem or concern. The people in the group help one another by sharing experiences, knowledge, and information."
"But by and large, people come to Autreat to celebrate autistic being, not to give or receive help with personal problems." Well, I don't really think you understand what occurs in my support group nor am I quite sure why you characterize support groups in such a way. Why would you think that people don't come together for fellowship or "celebration" ,as you put it, of being autistic in addition to discussing personal problems? Let me ask you this. Does anyone in the discussion portion of a workshop share a personal and local concern or problem that fits into the topic of the workshop? If so, please let me know how this is different when an autistic shares a local and personal problem in a support group discussion.
By
K, at 8:48 PM
Part 2
"I expect that anyone with even minimal familiarity with professional standards of conduct will understand that we're not going to publicly discuss specific information about specific individuals." Jim, many autistic folks have problems with understanding "professional standards of conduct". I apologize for not understanding what the professional standard of conduct is in this situation. However, because I happen to care for the person you have characterized as aggressive and disruptive in blog posts and denied them inclusion based on that very common autistic characteristic, I find that it is important that when an accusation is made, if it is not defended against, then the accuser (i.e. you) is presumed in many circles to be the truth.
I certainly understand your need to cloak behind professional standards, but I'm a bit disappointed that you chose to escalate the situation by implying some sort of criminality of this woman by suggesting the following: "In the instance you're referring to, Autreat policies were scrupulously followed, and included a consultation with the National Center for Victims of Crime." If you have professional standards, make accusations that are now public, why chose to further inflame with "consultation with the National Center for Victims of Crime"? Is this considered professional standards?
I happen to be intimately knowledgeable about this person and her dispute with one of the "stars" of Autreat that lead to her exclusion from Autreat. From my personal knowledge about this situation, and I admit I can't be all knowing about everything in this situation, but from what I know, this person has never made any threat of violence which you did not I note disabuse the reader of this thread of believing. She has never committed a crime that I'm aware of and the fact that you would characterize it as such is very disappointing. I don't think I would be exaggerating to say in fact this woman has been bullied relentlessly by a certain group of folks. Unfortunately, you have contributed to this if the side of the story I'm familiar with is accurate. Again, I admit I don't know everything, but I have been intimately informed over a number of years of this situation.
It is simply sad to me that this person, who has experienced so much abuse and sadness in her life is being treated so poorly by the one community that should support her. I've always felt a connection with the most abused, the most condemned and the most misunderstood and since the birth of my son, this connection has only strengthened.
By
K, at 8:49 PM
Part 3
"I will state categorically that no one has ever been excluded from Autreat based on "type of autism," "autistic communication style," or political opinions."
Jim, are you aware of how some of the statements that are on Autreat's website might be viewed by some autistics as uninviting and exclusionary? Perhaps what you say is true, that no one has ever been excluded from Autreat based on type of autism," "autistic communication style," or political opinions." I'm referring to this particular statement on Autreat's website: "Autreat focuses on positive living with autism, NOT on causes, cures, or ways to make us more normal." I assume the NOT is an exclamation meant to strongly discourage this type discussion. If you were an autistic that wanted a cure, would you feel welcome by that statement? What if an autistic person wanted a cure for anxiety, which is quite common in autism? Would they feel they would be welcomed by that statement? Is there anything to celebrate about anxiety? Couldn't there be a great and helpful workshop about handling anxiety that could be really useful in the average life of a lot of autistics? As mentioned earlier, there were workshops on social skills for teens, that sound as if it were meant to mediate social deficits. Nothing wrong with that if that is what your interested in to make your life better.
I happen to know for a fact that there are self identified autistics that have not gone to Autreat specifically for that clause, namely, " "Autreat focuses on positive living with autism, NOT on causes, cures, or ways to make us more normal." Two years ago I privately offered Marty Murphy transportation and lodging money to attend Autreat in hopes that she too might get a bit of "positive" energy and she could understand why her letter hurt so many people. But she declined and specifically for the reason that she didn't feel she would be welcome based on that statement and her past. So, in essence, while you may be able to support your belief that "no one has ever been excluded from Autreat based on "type of autism," "autistic communication style," or political opinions, you can only state that your committee has not actively committed those things. However, after I have given you this particular example, I hope you will in the future clarify that position because Autreat has and does discourage certain types of autistics with certain "political" beliefs from attending and they have in effect, caused some autistics through those statements to not even fill out a registration form. Exclusion can occur in at least two ways. Exclusion can be done overtly (i.e. rejection of a registration) or avertly ( possible registrants are discouraged based on the political statement on Autreat's website, don't register and are thus effectively excluded because of strong discouragement of their beliefs).
By
K, at 8:50 PM
Part 4
By
K, at 8:51 PM
oops, Part 4
I'd like Autreat to live up to its mission, precisely this: "Autreat is an opportunity for autistic people and those with related developmental differences, our friends, and supporters to come together, discover and explore autistic connections, and develop advocacy skills, all in an autistic-friendly environment." Discouraging autistics with differing views on cure isn't inclusive nor autism friendly for those autistics.
Because I have priviledged information about the barring of this particular woman I hold judgement on her until proven otherwise. The picture you have portrayed is not consistent with the history I know of her. Again, I'd like to say I find it most disturbing that you have chosen to escalate your language by referring to the "Crime Victims Center". This woman to the best of my knowledge isn't that type of person. I've had countless very heated exchanges with her privately, wherein she was very upset, but not once did I hear anything that would rise to the level you are insinuating. The woman can barely even move around freely.
I hope Autreat can open up a bit more to autistics that view things differently and not actively discourage any discussion that an autistic might want to discuss. By having such exclusionary language on your program and site, I'm afraid you have discouraged certain types of autistics from enjoying what you termed an autistic-friendly environment. Until that view is changed, the environment for these folks may not be as friendly as you think and Autreat would certainly be better served by being as inclusionary as possible.
By
K, at 8:51 PM
Part 5
Lastly, let me add this. I think the attendees at Autreat as well as at least one coordinator are missing out on a group of autistic folks that could add a lot of understanding of what it is to be autistic. Such exclusionary language does discourage a whole group of autistics from attending. This is really a loss for the attendees of Autreat because I've gotten to know some of these folks and they are privately wonderful human beings.
Its just a sad situation. I wish I had a magic wand to make things different.
By
K, at 9:14 PM
Kent, that is some of the most tortured logic I've seen in a long time.
You accused Autreat of rejecting an autistic person based on her opinions and communication style. I have responded by explaining the grounds on which a person may be excluded from attending Autreat, and that those grounds do not include opinions or communication style.
You demanded that I explain what I meant by "aggressive and disruptive." I have responded with the explanation you requested, again with reference to the Autreat policies.
Now you're unhappy that I explained what you asked me to explain, to the extent I am at liberty to explain it.
If you don't want answers to your questions, then don't ask them. If you ask, then be prepared for the answers.
If a person was excluded from attending Autreat, that decision was made according to the policies referenced at www.autreat.com/Policies.html .
In the instance you've asked me to explain, there was consultation with outside experts as provided for in the Autreat policies.
This is all I am going to say about that particular instance. If you want to know more about the person's actions, you'll have to get that information directly from her, or from other people who have knowledge through non-confidential channels.
As for whether Autreat "excludes" people by giving clear disclosure of what we're about and what we have to offer, I might as well complain that the ice cream man is excluding me, as a vegan, by not selling me a hot baked potato.
The ice cream truck clearly advertises that it sells frozen dairy products. That tells me that if I want a hot vegan product, I should go somewhere else to get it, and not waste my time waiting in line at an ice cream truck which sells frozen dairy products.
Autreat is what it is. It offers what it offers. The web site and brochure text are meant to inform people of what they can expect to find, if they decide to attend Autreat.
If what we offer is what they want, then there's a reasonably good change that if they come, they'll feel they got their money's worth in the end.
If what we offer is not what they want, and they feel uncomfortable with the descriptions of the event, then they have fair warning that if they decide to come anyway, they're likely to end up feeling uncomfortable and disappointed. We aren't telling them that they're not allowed to come. But they might well make a personal choice that if Autreat doesn't offer what they want, then they don't want to come.
Truth in advertising is not exclusion. It's giving people the opportunity to make an informed choice about whether they want the thing that's being advertised.
More fair disclosure: Don't bother asking me any more questions that involve contradictory reasoning and distorted meanings. I do not choose to spend any more of my time responding to nonsensical accusations. I will not be responding to any further comments or questions from you, unless I perceive them to be reasonable. And I will not engage in any further discussion about the reasons why any particular individual was banned from attending Autreat, other than to repeat that the decision was made in accordance with Autreat policy and that the policy is available for review.
Jim Sinclair
Coordinator, Autism Network International
By
J8, at 1:00 PM
Part 1
"Kent, that is some of the most tortured logic I've seen in a long time."
I'm not sure how my logic was twisted, nor do I understand your rather "aggressive" response. Your post gives me the feeling that you were a bit enraged at my insistence of innocence on my friends behalf.
For me, my concerns are perfectly logical. Do you use such aggressive and derogatory language about individuals on a typical basis, telling them that they use tortured logic (I am of course being sarcastic and not trying to necessarily make you more angry)? I made well reasoned, in my viewpoint, arguments for inclusion of all folks. Your organization claims an "autistic-friendly" environment. I've pointed out to you how in some circumstances, with some autistics, this may not be so friendly. If you choose to exclude certain viewpoints, that is fine, as long as you don't insist that your organization provides "autistic-friendly" environments because I've given you examples of where some autistics, high profile ones at that, don't feel welcome and felt uncomfortable with registering. Making general statements of inclusion of autistics and providing "autistic-friendly" environments puts the burden upon you to demonstrate that this is true, no?
"You accused Autreat of rejecting an autistic person based on her opinions and communication style. I have responded by explaining the grounds on which a person may be excluded from attending Autreat, and that those grounds do not include opinions or communication style."
I merely stated that the reasons you outlined were inconsistent with my knowledge of the situation. The burden is always on the accuser to prove guilt, not on the accused. I think such "institutional" ground rules you are using to explain your position is typical of many organizations that wish to excuse themselves from culpability. While your rules may not state explicitly those exclusion criteria (opinions or communication style), they in effect do exclude based through discouragement of registration.
You demanded that I explain what I meant by "aggressive and disruptive." I have responded with the explanation you requested, again with reference to the Autreat policies.
I was a bit curious about the description "aggressive and disruptive posts on blogs". What does that mean exactly and why would "angry" typing be so dangerous to others? Autistic folks are often excluded from the mainstream based on "policies". I'm disappointed that you would use that mantra to defend Autreat's rejection. If this person committed an act of violence or threat of violence, I would support her exclusion. However, I do not believe that has occurred and that "policies" is an excuse to reject her. If however, she did threaten violence against someone, please state so. I will ask her and then attempt to confirm. If this is true, I will certainly be glad to owe you an apology for assuming, based on my knowledge, that you rejected her for her opinions and politics. As you explain in your policies, someone had to object and ask for her to be barred from attending and 2/3rds of your committee had to approve. I assume that there had to be some really strong proof to garner a 2/3rds. Who is on the committee by the way? I couldn't find that information on the website.
By
K, at 3:17 PM
Part 2
"Now you're unhappy that I explained what you asked me to explain, to the extent I am at liberty to explain it. "
You made some serious allegations, ones that I believe are false and in fact are probably fictitious based on my knowledge. However, I do understand that there could be a liability for you and your organization for revealing more, especially if what you reveal does not support your explanation. Truth is bullet proof in liability claims.
If you don't want answers to your questions, then don't ask them. If you ask, then be prepared for the answers.
All I have read is something about policies ("If a person was excluded from attending Autreat, that decision was made according to the policies referenced at www.autreat.com/Policies.html . "). Nothing I asked was ever answered. Please show me where it was and I'll retract my statements. Don't ask me to just trust what you say because what you say is inconsistent with my knowledge of both the person involved and the situation.
"In the instance you've asked me to explain, there was consultation with outside experts as provided for in the Autreat policies." Would you release the name of the person at this Crime Victims Center that I can verify this with? I hope you will excuse my reluctance to believe you, but its due to the aforementioned inconsistency of "actions" you claim and I know that causes me to be skeptical. I don't need to know particulars of your conversation. But, I'd like to verify that a call was made.
"This is all I am going to say about that particular instance. If you want to know more about the person's actions, you'll have to get that information directly from her, or from other people who have knowledge through non-confidential channels."
She denies it. I believe her because I've known her for years and her explanation is consistent with my years of knowledge of her communications. I don't believe you as of yet, because your claims are not consistent with my personal knowledge of her and her blog posts to be a person that would threaten violence. If you claim that it wasn't violence per se, as she claims you did not accuse her of, then I must assume, based on your policies, that she would simply make it uncomfortable for some others attending Autreat (autistics making folks uncomfortable is quite common). Her story is certainly consistent with your email, namely this statement: "This decision has been made on the basis of your extensive history of extremely disruptive and aggressive behavior which we were able to find on many public blog posts." Jim, I must say, this is a rather disappointing reason to exclude an autistic person. How many autistics writing have been accused of being "disruptive and aggressive" online? I would think most or at least a lot. That's autistic communication for many of us. We struggle with being understood, can at times be blunt. No where did you point out in your email that she threatened violence. In fact, you seemed to have the typical NT response of misunderstanding this type of autistic communication.
By
K, at 3:19 PM
Part 3
It seems to me your confusing bluntness with aggression. You yourself have been accused of using aggressive and disruptive behavior. Two years ago, a woman on Youtube asked me to intervene when you became upset at a tribute she made to your essay "Don't Mourn for Us". She was extremely upset by your response to her video, meant as a compliment to you. According to her, you vigorously claimed that she had not quoted your full essay and that you were in effect insulted and she "better quote the full essay". It made her physically ill and scared. Should you be barred from Autreat for that "aggressive" email to this woman from attending an "autistic-friendly" conference by and for autistic people? If she was in your position of power, would it be right for her to exclude you? I think the answer is no. As I told her, many times, autistic people use a communication style that can seem "mean or nasty" but it isn't meant to. But, perhaps I got it wrong. Did you mean to make her ill and scared? I think her experience with your email turned her into a "curebie". Your email in this one instance, in my opinion, turned someone against autistic self advocacy. Of course this "turning" can't be proved, its just that she completely changed after that. Her name is Sagey Rudman.
Here is the point I'm trying to make with the above example. If you make policies that exclude certain types of communication styles that are typical for a lot of autistic folks, you have in essence, created a very "unfriendly" environment for some autistic folks that you may not agree with you. Because they communicate a certain way should never be a criteria for rejection ("This decision has been made on the basis of your extensive history of
extremely disruptive and aggressive behavior which we were able to find on many public blog posts.") You are in a way, perpetuating a "shame" policy for certain autistics. I make the following observation/opinion assuming that there never was any threat of violence. Violence is a different situation. But, as I mentioned earlier, you never actually claimed this in your email, the person involves doesn't claim that you were making this claim either. Which leads me to a very important question. Why do you not set the record straight and either claim this person threatened physical violence or not? You have stated you followed "policies" but there are a lot of "policies", with some being mild and some not. If the policy pertains to "making someone feel uncomfortable", then I must state unequivocally that my opinion of that policy is that it is by its nature anti-autistic.
By
K, at 3:20 PM
Part 4
"As for whether Autreat "excludes" people by giving clear disclosure of what we're about and what we have to offer, I might as well complain that the ice cream man is excluding me, as a vegan, by not selling me a hot baked potato. "
Yes, I don't doubt your disclaimer is very clear. Autistics that would like to talk about certain "forbidden" topics are discouraged from attending. That is certainly truth in advertising. That's fine. But don't claim to be inclusive or that you don't discriminate against autistics because you clearly do if they hold certain opinions. That's all I'm sayin'. I'd like your organization to include all autistic opinions, but its your organization and certainly your right to reject those particular autistic opinions. Just don't claim a global "autistic-friendly" environment. Because as you write; "if I want a hot vegan product, I should go somewhere else to get it." What's interesting to me is that otherwise, I agree with your views as expressed by the mission of Autreat, I just don't agree with exclusion and discrimination, in any form.
"If what we offer is not what they want, and they feel uncomfortable with the descriptions of the event, then they have fair warning that if they decide to come anyway, they're likely to end up feeling uncomfortable and disappointed." Such an unwelcoming statement, don't you think? Do you think autistics that may feel differently to you could add some benefit from their views? or would you have them suffer under the same oppression you claim you want to rid the world of? Are some autistic opinions more valued than others? Why? Don't expect the world not to "mourn for us" if you yourself are exclusionary.
Jim, I'm not disinclined to support Autreat or you personally. In fact, I'm inclined to typically support the mission of Autreat. I've also offered in the past to build a website for you personally when you asked on the Autism Hub Discussion list (though you never responded to this offer). In case you don't know, it was me that recommended that you be added to the Autism Discussion group (despite not having a blog on the Hub) and subsequently you were added. I've done lots of things in the background that would lead a casual observer to think I was inclined to take your and Autreat's side. I'm just concerned about the situation outlined above because whatever I think about Autreat's mission, I think its important to fight against any form of exclusion against any autistic, even ones I may not agree with.
"More fair disclosure: Don't bother asking me any more questions that involve contradictory reasoning and distorted meanings. I do not choose to spend any more of my time responding to nonsensical accusations."
That's unfortunate. Just chalk me down as another autistic your unwilling to "entertain" in conversation and ideas. I have a lot to offer, as do you.
By
K, at 3:20 PM
christschool said on July 11th, 2007 at 2:19am #
I find it ironic that a website named Dissident Voice would publish an article by a woman who represents an oppressive organization as viewed by the majority of autistic people. Epidemic rhetoric and fear mongering have long historical consequences for my people. Notice how none of the quoted people in this article included autistic people? Anne, how many autistic people work at A-Champ? Why did you not include voices of autistic people in your article talking about us? Comments to this blog like calling us “damaged”, “mercury toxic” etc is very demeaning, not to mention utterly without scientific merit as is now playing out for the world to see in the Autism Omnibus Proceedings. We are not “affected” by autism, we are “affected” by the way society views our autism and treats autistic people. My autism is neither a “gift” nor a burden. It’s simply who I am.
It is time for editors, especially those that purport to support social justice, to insist that when a “group of people” is being discussed, to make sure they include the “voices” of the group being labeled and discussed.
“Nothing about us, without us”! is a common slogan of Disability Rights Activists and I believe its relevent to this discussion.
Just two years ago, you were with us. It's a sad loss.
By
Clay, at 11:32 PM
"Just two years ago, you were with us. It's a sad loss."
Hi Clay,
I'm still with you and still believe in what I wrote 100%. I'm still arguing for autistic voices to be included, even ones I may not always agree with.
By
K, at 7:24 AM
And that's your downfall, Kent. There are voices in the Autistic community (the whole community not just certain parts) who should NOT be heard - because they disrupt and hold back the true understanding and acceptance of the Spectrum as a whole. That's the basis of the Autreat policy the way I read it. Chances are I'd probably not be welcome - but unlike the person who received that email (Clay - I understand that the person denied wasn't Mitchell, but rather Droopy) I would accept that decision. I can be aggressive when provoked as a number of people in the community will attest to.
I'm working on that reply I promised BTW.
By
Anonymous, at 7:19 PM
"There are voices in the Autistic community (the whole community not just certain parts) who should NOT be heard - That's the basis of the Autreat policy the way I read it. "
Phil, while the Autreat policy would seem to be a bit more inclusive than you state, I do however agree that the actual implementation of said policy is accurately reflected in your statement. Thus my concern with Autreat, namely, that is seems to be exclusionary and actually by having these policies, they detract from the power of their message. No one outside ND will take anything a self advocate says seriously if the said self advocate can't live by their own standards. Rather than strengthening the ideas coming out of Autreat, they have weakened them because they have lost a moral high ground. All because of personal pettiness in my opinion.
By
K, at 7:18 AM
Right - so you'd allow those who would make us look like complete and utter fools to the mainstream in just to be inclusionist? Sorry - that will have the very effect you claim the lack of inclusion would cause.
For example - under your terms, we'd have to allow Best a voice. See the problem?
By
Anonymous, at 7:59 AM
Hi Phil. I'll try to clarify a few things for you.
"Right - so you'd allow those who would make us look like complete and utter fools to the mainstream in just to be inclusionist?"
I'm not so sure I understand how allowing all autistics would make Autreat look like fools. I do think it would be a powerful message to say that while we don't all agree, we agree all should be represented and included. Its a rather shallow set of beliefs that cannot stand the test of disagreement. Besides, in this case, Droopy is a moderate, not an extremist. She believes in many things we all agree on.
" Sorry - that will have the very effect you claim the lack of inclusion would cause."
The lack of inclusion renders your agruments hypocritical and less likely to have any moral strength behind it. Considering that autistics have no power today, the only thing it can use is moral authority. This was Ghandi's approach. He was able to at least get the Muslim and Hindu populations, with all their hatred and disagreements, together to push for an independent India against the desire of the British Government. I don't think the divide between one group of autistics against the other is as great as was Muslim/Hindu.
I'm not just thinking here about myself. I think I'd like my son to have the choice to believe what he wants to believe and be able to attend whatever event he wants to attend. I certainly don't want someone to predetermine where and under what litmus test my son must possess for inclusion. I think its important to think beyond oneself here. And yes, I do think those of us with children bring a different perspective to this issue simply because when you have a child, your no longer living for yourself but your living for them and any group that applies such subjective "rules" of how an autistic is suppose to behave (within the reasons outline in Mr. Sinclair's rejection) must be challenged on those views. I'm sorry if this comment belongs in the category of "disruptive and aggressive" blog comments.
"For example - under your terms, we'd have to allow Best a voice. See the problem?'
Well, I would disagree with that assumption on several points. 1.) "Autistic-friendly" environment would not include Mr. Best because he hasn't identified himself as autistic and has in fact vehemently denied it. 2) Mr. Best's prose is filled with violent imagery (as I mentioned earlier if this woman had threatened violence or wrote with violent suggestions then I wouldn't support her). 3) If Best had only written what is typical of this woman's writings, I'd support his inclusion if he were autistic.
By
K, at 2:25 PM
LOL! You obviously didn't see Droopy when she was on the Autism Speaks Ning, Kent! She was very much Best-esk.
All the mainstream wants to see is a bunch of Rain Men per se. If they get it - they'll default to that stereotype and ignore the rest of us. That's a tactic Best uses - calling anyone who isn't LFA like his son a fraud. We have to avoid that.
But by including everyone, we'll play right into their hands and we can't have that. Especially the ones who want to be cured (ie Mitchell).
The Autistic Community includes parents who are NT - in spite of the fact that I consider Best to be a closet Aspie. So in fact you are yourself not being fully inclusionist. My point is that there has to be a line drawn, and you drew one even though you also said (in effect - not actually) that one shouldn't.
Bottom line - we need the correct approach with something that is much maligned. And being inclusionist in this case is not the correct approach. Some may not like that, but in the end everyone will benefit from it. There is too much focused and frenzied hate about from within the community - something that Ghandi never had to deal with, until one of them killed him. Remember that.....
By
Anonymous, at 8:05 PM
"All the mainstream wants to see is a bunch of Rain Men per se. If they get it - they'll default to that stereotype and ignore the rest of us.....But by including everyone, we'll play right into their hands and we can't have that."
What is wrong with Kim Peek or those like him? Are you ashamed to have them identified as autistic? My son happens to have the same diagnosis as Kim Peek. What are you trying to say here? That Autreat shouldn't allow those types in?
"The Autistic Community includes parents who are NT - in spite of the fact that I consider Best to be a closet Aspie. So in fact you are yourself not being fully inclusionist. " NT's need to support the mission of Autreat to be included. Autreat doesn't promise an NT friendly environment, but an autistic friendly environment. Its a double standard yes, but an understandable one. For instance, a white person who does not support the mission and goals of NAACP shouldn't be a member. However, a black person who doesn't support the mission of NAACP should be included because the organization supports all black people, regardless of personal politics. The organization is by and for black people, not just some black people.
"But by including everyone, we'll play right into their hands and we can't have that. Especially the ones who want to be cured (ie Mitchell)."
I say Autreat needs to include everyone, especially autistics like Jonathan Mitchell, even more so that people like me or you. If you want to preach in an echo chamber, go into a closet and talk to yourself. If you want to expand your influence, invite others that are quite there with you so you can at least have a conversation. Besides, Jonathan Mitchell's voice is just as legitimate an autistic voice as any other persons. This may be hard for you to believe Phil, but Jonathan Mitchell and John Best don't care for me very much. One has posted calling me a fag for my beliefs and allowed others to defame and another one has called me intolerant and had posts dealing with me. Both have attacked me like they have you. But here is the difference, at least in the case of Mitchell (who routinely censors my comments), I don't care because I have the belief that despite the animosity, it is better to talk to each other and support each other because the outside world will typically not support either one of us. I see a brother/sisterhood with other autistics, even the Rain Men type you want to distance yourself from and I suspect Autreat does as well, judging by the lack of defense against this idea from spreading. Sinclair has proven he reads this blog and these comments. Yet, he has thus far refused to disabuse comments such as yours (i.e. "there are voices in the Autistic community who should NOT be heard" or Clay's "Anyone, regardless of disability, or non-autistic, who has engaged in violence or credible threats of violence"). I say shame on Jim Sinclair for not disabusing the reader of these comments from thinking that this woman threatened violence or that certain types of autistics (Rain Man types) shouldn't be included. Shame, shame shame. This is very ugly in my opinion.
I ask that Mr. Sinclair distance himself from this type of support and accusation.
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K, at 8:49 PM
Kent, you still don't get it do you? Mitchell would destroy Autreat. So would all the curebies - because of their sheer hate for themselves and for the condition of Autism. They would infect the weak in the Autism Community and I suspect Jim would know this. Is that what you want?
I'll tell you exactly what would happen. We would be disempowered. Support structures would collapse and be replaced with the Autism Speaks line based in eugenics. I for one would be a part of that, and yet following your line will have that exact result. We are in a situation where people like Mitchell are literally poison. Self esteem is in short supply within the community as it is. This would only make it worse.
And it would end up costing lives.
Please understand this.
Jim Sinclair, if you are reading this - if I am saying anything wrong please let me know.
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Anonymous, at 7:38 AM
Now to my promised reply from further up;
Part 1:
First of all, the email Kent reproduced is without a doubt about Droopy. She's a bad example because her behaviour is upsetting to many in the community. You might not be one of them, Kent, but to many others she is a threat. She was booted from the Autism Speaks Social Network for her behaviour, and has a history of being kicked out of places because she makes others feel uncomfortable with her conduct. She is an exception rather than representative of a non existent rule.
Now then - Kent, you demonstrated to me that you have big problems reading between the lines. That is - seeing the meaning behind the words being typed. You're being literal. Now again - I'm not saying that as a negative. I'm saying it as a difference between us. I'm pretty good at reading between the lines considering, and what you typed said to me that you were promoting support groups as having one purpose at the root. Does that make things a little clearer?
If you go back to what I wrote I stated that "Here is a definition of support groups" I didn't write here is THE definition, I wrote here is A definition. By using the A instead of THE naturally implies one of a number of definitions, not a singular definition.
When one reads between the lines, you are trying to push that definition in spite of using "a" instead of "the" because it backs your belief. That's the impression you left certainly with me.
What you guys were saying is that me and my fellow members were atypical of the AS population. I never initiated that line of reasoning, you guys brought it into the discussion.
I can't speak for ABFH, but I mentioned it in the context of you bringing that definition of support group up - insinuating that your group was typical when it wasn't. Hence the objection.
I'd be careful with that because you are clearly stating that one is a loser if they are unable to give a "proper" or correct response to a stimulus. That is at the heart of autism, namely that autistics give atypical responses to the norm responses to stimulus. By your definition I would be a loser because I didn't perform based on "having" information to perform "correctly", as if this was a choice of mine.
It's not a choice of yours at all, and that's an acceptable explanation. So no, by the definition I gave you would NOT be a loser. Because of the very reason you gave - it is at the heart of Autism. Anyone who says it's not and classifies you as a loser is your enemy.
I have this issue with being in a "community or group" that would espouse such things as calling autistics that have significant challenges atypical, even inadvertently dismissing challenges like executive functioning as something that isn't intrinsict to AS. This argument, on the Hub, is coming primarily from "autistics" that don't have a formal diagnosis and leads me to question the entire idea of a web destination that would only welcome autistics with a pro-neurodiversity opinion.
I see those two issues as seperate, because for one thing we are all atypical - as I think I previously explained. We are all individuals no matter where we are on the Spectrum, whether it be LFA or Aspergers or anywhere in between. As far as those who haven't been formally diagnosed goes (and I'm not amongst those numbers - I have one) that's an impossible issue to deal with online because you don't know for sure either way. Anyway, anyone who accepts themselves as Autistic for life would be pro neurodiversity, even though not all of them would press it as an important line. As long as they aren't pressing for a cure they can do what they feel is right for themselves because it won't hurt anyone else.
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Anonymous, at 7:50 AM
Part 2:
I'll say this, if my son, who is being raised in a very autistic friendly and pro-empowerment household decides one day he wants a cure and wants to talk about it, I would support him because he is my son. I sure wouldn't want him excluded from any group. That is essentially what the Hub would do. They would exclude my son because he wasn't the correct type of autistic. That's not empowerment, that's dogma and demagoguery.
Actually, Kent, anyone who seeks a cure is disempowering those who don't. That's certainly why I'm against it with the passion that I have. I can't speak for the Hub on that one, but it wouldn't surprise me if their view was similar.
There is an underlying shame associated with being autistic by some. What I mean by this is that while there is all this talk of acceptance, there is an underlying tone exhibited by statements like "not a representative sample" that seems to convey a sense of shame of some common autistic qualities. There seems to be only value in how much an autistic can be NT in certain aspects.
That last sentence is an NT mantra and comes from their intolerance, and I certainly oppose that. But you bring up this "representative sample" thing again. If we must talk that way - the correct example would be one that shows as many varieties as possible on the Spectrum, even within DX's (like Aspergers for example). The only shame from those within the Autistic community comes from those who display unprovoked behaviour that upsets - and nothing is done about it. Now sure, sometimes action is difficult to take - but tolerance lines can only go so far. Many believe that Droopy has gone beyond those lines. Some believe I have, but that only comes from those who want me to ignore those who shouldn't be ignored because of the danger level they pose (ie Best). Those who know me well enough know that when I'm not provoked I can discuss and debate very well - even with those on the other side of the fence who don't get all bent out of shape (Livs Parents/Bill is a good example of this).
Why would anyone want to distance themselves from the core of what it is to be autistic?
That's an excellent question, and I know of at least one person who is doing exactly that. I won't name him but I'll tell you why. He saw the Spectrum as a weakness that was vulnerable to attack (and it was and the bullying was severe to say the least) and instead of gaining strength from who he is he allowed the bullies to win and he has tried to distance himself. And he thinks he's been succesful. I know he hasn't because the traits still display themselves openly, but he won't listen to that. He sees the Spectrum as a bad thing and he thinks he's conquered it.
Acknowledging one's limitations shouldn't limit what one can do and do well.
I agree wholeheartedly. Trouble is, the NT world doesn't see it that way and penalises us for it. I think that fact covers the rest of what you said there as well.
I think that covers everything. If I missed anything I'm sure you'll let me know.
By
Anonymous, at 7:51 AM
"Actually, Kent, anyone who seeks a cure is disempowering those who don't." "I'll tell you exactly what would happen. We would be disempowered. Support structures would collapse and be replaced with the Autism Speaks line based in eugenics." "And it would end up costing lives."
I don't believe in your apocalyptic scenario. You may feel this way as may some others, but I don't. The same line of argument is used by those who don't want gay people to have the legal right to marry. Their argument is that by allowing gay people to marry it would threaten the institution of marriage. As a straight married man, I feel no threat to my marriage. As an ND autistic, I don't feel any threat to my beliefs or my cause by autistics that feel differently.
I understand that not everyone will feel the way I do about this, but I happen to believe I'm right on this as you feel you are right. I reject you "logic" and conclusions.
I believe I've already addressed everything else you wrote in earlier comments of mine.
Do not fear inclusion.
By
K, at 12:16 PM
Timelord said:
Jim Sinclair, if you are reading this - if I am saying anything wrong please let me know.
I'm not exactly sure what you're saying. If you're agreeing with Kent's allegation that Autreat banned someone based on the person's politics, then that's wrong. If you review the Autreat policies (again, at www.autreat.com/Policies.html), you will note that there is absolutely no provision for banning or expelling people based on the opinions they express about autism (or about anything else, for that matter).
Nor is there any provision for banning or expelling people based on other people's being "uncomfortable" with them. (There have been numerous people at Autreat over the years who made me feel uncomfortable, and I've never even considered restricting their access to Autreat for that reason.)
So if you're agreeing that we did ban someone for these reasons, then yes, you're saying something wrong. No one has ever been excluded from Autreat based on "politics" or "making people uncomfortable."
If you're saying that people should be banned from Autreat for those reasons, then I think you're wrong about that too. It's true that we don't accept curebie-type proposals for presentations. (This is very clearly stated in the Call for Proposals every year.) Like any other organization, we are well within our rights to choose to give our own resources (one of our limited number of presentation slots, and a presenter stipend for free registration) only to presenters who will promote the goals of the organization.
But for people who only want to attend, not give presentations, anyone is welcome to come--except people whose exclusion is justified under the posted Autreat policies.
I'm not sure why a bunch of curebies would want to pay for registration and travel, come to Autreat, sit through a program of presentations they disagree with, and refrain from disrupting those presentations with their own curebie agenda (since disrupting presentations is disallowed under Autreat policy). But if they did want to, then sure, we'd take their money, and welcome them, in the hope they might learn something from us.
I don't think that would "destroy" us. I think we're stronger than that.
Jim Sinclair
Coordinator, Autism Network International
www.ani.ac
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J8, at 3:27 PM
No Jim, I wasn't saying that. Throughout my response to Kent I was referring to the disruption factor - which as you said yourself IS a policy. What I was having a go at Kent about (and he missed this apparently) is that people like Droopy and Mitchell (and Best of course) WOULD disrupt the proceedings.
It's possible that what I said may have been misread into thinking that I was playing politics in the first instance - when I wasn't. That's a secondary factor. The same applies to making people feel uncomfortable. The primary factor would be the disruption.
Hope that clears that up.
No, Kent, you haven't covered everything. You are pushing an agenda that will destroy - and I don't agree with your analogy about gay and lesbian marraige. The institution of marraige isn't a culture as such - whereas the Autistic community is. So is the gay and lesbian community. Think of it like this - how about a gay and lesbian faction trying to stop such marraiges from within the community? That's similar (not the same - similar) to a curebie barging in disrupting those who don't want to be cured. It destablises - and consequently disempowers - the community. Curebies know that and it's why they do it, and it's why I for one fight them.
And you'd include disrupters? Way to kill a community, Kent.
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Anonymous, at 8:08 PM
"Nothing About Us Without Us, unless Us disagrees with Us" and our peaceful enjoyment, which is not to be confused with making us uncomfortable.
By
K, at 8:22 PM
Disruption equals meltdown.
You'd risk a rash of meltdowns for the sake of inclusion then?
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Anonymous, at 7:57 AM
"Disruption equals meltdown.
You'd risk a rash of meltdowns for the sake of inclusion then?"
I have a higher opinion of the capabilities of those attending Autreat than you apparently do.
One small diminutive woman typing on an augmented communication device is not threatening. If typing causes a meltdown, where ear plugs.
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K, at 12:22 PM
She'd be the one having the meltdown and disrupting proceedings because her fantasies aren't being believed. That's if the person passing on the material she types passes it on - and if they don't (for all the right reasons) that will cause another meltdown.
By
Anonymous, at 8:21 PM
Phil,
You take the same attitude as you accuse others of taking. Its really quite sad that this rift continues. I left a rather nice post on Jonathan Mitchell's blog today, but he refuses to publish it. Simply because he, like Autreat, wants to sit in a closet and listen to themselves. No one else must possibly be allowed in who has a different opinion and seeks dialogue. Doesn't see like many folks can stand to entertain that they may like someone, if they allow themselves a bit of freedom to learn.
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K, at 8:58 PM
In the UK, the government gives £250 to parents who open up a child trust fund when their child is born, and then matches payments put into the fund up to a certain amount. At age 18, the child can use that account for any purpose - and with the government matching funds, this can turn out to be a significant amount of money. If it happens that the money is needed for living arrangements on account of disability, there are already powers of financial attorney possible, which would include the fund.
A disability-specific fund seems a bit pointless when such a comprehensive general trust fund system would be relatively simple to establish. After all, a lot can change between diagnosis and adulthood (and sometimes even after adulthood begins).
By
Alianora La Canta, at 12:23 PM
Kent, you deny that the rift that exists has to potential to tear our community to complete shreds. That rift can not be over come, so we have to adjust accordingly - and that means exclusion.
Fact of life. I've accepted it and I think it's about time you did as well - if anything for your own peace of mind. If you can't do that, then you aren't the solution - you're the problem. You trust Droopy way too much.
And you stick to your line even though you have just experienced first hand why Mitchell shouldn't be included.
By
Anonymous, at 8:39 PM
"And you stick to your line even though you have just experienced first hand why Mitchell shouldn't be included."
That's correct, I stick to my beliefs despite Jonathan's practice. He has just as much right to his beliefs as I do to mine. I'd invite him still.
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K, at 7:52 PM
And the whole thing would fall down like a pack of cards.
By
Anonymous, at 8:25 AM
Oy vey!
What else is there to say?
By
Anonymous, at 12:03 PM
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