4/22/2012

Land Mines And Sour Grapes: Those are Metaphors

Real world activities relating to autism have taken up a large chunk of my month of Autism Awareness, so my online participation has been limited to a few blogs and to making sure, with Kathleen, that we had two weeks worth of bloggers up on the Autism Blog Directory.

It's been a busy month in autism land, though. The Judge Rotenberg Center trial is ongoing. Autism Speaks and the Autism Society finally released statements against the center and its use of shocks. Perhaps the end of the center's ability to abuse and torture their clients will finally be in sight. It's a start, anyway, even if it's not the end of the Center.

Step outside of this major story, the ability of institutional settings to abuse and restrain their disabled clients, and it's easy to see that there's a world of land mines and sour grapes (those are metaphors, my Lily would yell triumphantly) in this community (and sometimes it's hard not to be the one feeling sour grapes).

What do I mean? Well, consider this two year old article on the use of worms in autism that I wrote. This week some worm-loving true believers found it and have spammed the article--we went from a handful of comments to over 110 in a few days. Their bottom line: worms are good and who cares if it hasn't been properly investigated--parents should take their kids out of country and have them infected with worms and see if it works. Our kids aren't guinea pigs, and if you have to leave the country to do it and go to Mexico, Hong Kong, or South America to do it--there's your frigging sign, people.

That shouldn't be a land mine, but it is, because some people are so convinced that the worms they intentionally put inside themselves healed them that they want to make sure they get others to do it, too. See, that would validate what they did, and if they can get people to do it to little kids, all the better.

Other land mines this month that I'm stepping in involve the release of two books involving nonverbal (or limited verbal) autistic individuals. They've come for me to review, and my policy is not to comment specifically or publicly about individuals while fighting hard against facilitated communication and its kissing cousin rapid prompting. That'll be fun, especially considering the limited evidence that the communication is genuinely the autistic individuals in question. Of course, all over autism land, people are delighted about these stories, sharing them, high-fiving, and my need to couple professional responsibility and ethics with my own mental obligation to provide fair reviews is nothing short of a quagmire.

Another big land mine I'm continually navigating is one that stretches across the online world and the real world. I'll share a specific example that occurred yesterday as I helped with the first annual Swing 4 Autism golf tournament that my dear friend James organized to benefit Autism Speaks. We just got through our walk the weekend before (we're on the walk committee, and my Cisco College students rock as volunteers!), and making sure we had it manned adequately is always interesting. If you've never participated in creating an event that will attract between 2,000 and 3,000 individuals, you've missed out, trust me. The responsibility rests on a few people who go above and beyond to make it happen. They are phenomenal individuals, and they do it for the families in the region. It is a labor of love. But, here's where the online world intersects--the heat I have gotten, the rhetoric I see daily thrown at supporters of the walks that benefit Autism Speaks, often rises to hate speech. People vilify parents for doing this event. As I explained several weeks ago on a facebook post, I proudly do this for the families, for those autistic kids who get one day a year to go out in a safe, accepting place.

Bottom line: I do it for my kids: so that they are given a chance to contribute, to see others who also have autism. I do it for my students, so that they can be at an event that helps families, makes the families feel good and welcome.  I do it because it matters here in my real world, and that doesn't make me a bad parent for engaging an organization that several online autistics hate with a passion (and sometimes deservedly so). I do it because engaging all the organizations and working together to make things better is important.

For Bobby--who helped and was proud of his contribution.
For Lily--who loves all things Star Trek--and who 
forms close relationships with many of my students.

For Rosie who loves to be in the crowd, 
but who also tells you hundreds of times 
that she's bored, but always good-naturedly.


There's a sign at our events benefiting Autism Speaks, though, that I hate. And I hate it because the boy hates it (and told one of the staff last year). So yesterday, I hid it rather than putting it out for it to be seen. And if you're familiar with AS and its rhetoric, which is designed to maximize urgency, you know what it is: it's the one that says, paraphrasing, that more children are affected by autism than juvenile diabetes, HIV, or cancer.  Autism Speaks' website adds to it, though and notes that autism affects "more children than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome, combined" (Autism Speaks). True, no doubt, but it conflates autism as being worse than juvenile diabetes, HIV or cancer. And it's patently not true that autism is worse than those. I get it, get the need to create rhetoric that makes the public want to help, but at the same time, I watch people involved with AS interact with my children, enjoy them, and can't for the life of me see how anyone could look at my kids as tragedies to be prevented or kids in need of a magic pill to cure them. I don't think they do look at my kids that way, either, so there's an obvious disconnect between the rhetoric which is aimed at raising maximum funds, and the on-the-ground reality of dealing and interacting with autistic individuals who you want to help achieve their potential but who you think are absolutely delightful people in their own rights.

Total land mines. And more: the rash of online people who wake up to their autism in middle-age, who self-identify. What do you do with that? You don't know them and aren't qualified to judge (maybe they are and maybe they aren't), so you're in absolutely no position to judge their place on the spectrum, so you leave that alone. Why? Total land mine. Complete no-win situation. However, it's inescapable that a chasm that is absolutely uncrossable is developing between those who view autism as a serious disorder which causes significant impairment in individuals who are on the spectrum and those who are rewriting it into a personality type, and often, at that, a desirable one that makes one superior to so-called neurotypicals. Quagmire-time, and an absolute way to make sure that one is accused of sour grapes, at the very least. 

The one absolute is that if you are honest, forthright and speak your mind online, someone is going to jump in your shit and make sure to rally the troops to hound you until you capitulate after all but wetting yourself or that you slink away, afraid to ever speak your truth or speak out against what you see as clear wrongs. Never mind that these critics hold their truths as inviolable and that they should be free to speak without any fear of reprisal. 



32 comments:

farmwifetwo said...

Those that wake up to their autism in middle age, with real jobs, children and a life. They aren't the least bit disabled but will cheerfully tell you they know more about autism than I ever will. Considering I've been at it now a combined 22yrs, one on either end of the spectrum, I have fought for services in the system for both and know how it works much better than those people ever will.... I don't respect that assumption of my poor parenting... at all.

Atleast I've been told by a dev ped that I probably have asperger's. You'll note I have NEVER pedalled that dx. NEVER claimed to know more than anyone on autism. NEVER claimed autism wasn't a disability. You'll also note I have NEVER used my "passing for normal son" either. The only true "autistic" in this family is the one that is SIGNIFICANTLY disabled and I can tell you... he does NOT think it's wonderful when he can't do everything his older bro can. Gets pissed when he can't.

BUT, thankfully, those who "aspire" to take over a dx will lose it come January. I do believe it says "must impact day to day functioning"... that doesn't include Univ degrees, marriages, jobs or families... hate to tell you that's a "normal" life. Thankfully, they have managed to get the aspie's off the disability tax credit - at the detriment to parents with aspie children that are SIGNIFICANTLY disabled - they should be SOOOOOO proud of that acheivement. (btw, to coin my eldest and Sheldon on TBBT "that was sarcasm"). Thankfully, when I talked to my FSW at Comm Living they aren't getting services, they aren't getting funding and.... they aren't being respected or listened to. (note the "sarcasm" comment above)

So, I guess, online is the only place they can hijack the dx. Real life continues to ignore them.... They should be very, very proud that they are losing services for those that need them. (continuing with the sarcasm)

http://www.thesudburystar.com/ArticleDisplay.aspx?e=3211701

http://www.theglobeandmail.com/news/national/toronto/tdsb-cuts-teachers-office-staff-to-balance-budget/article2392627/

farmwifetwo said...

As for FC....

Sorry, but I'll take that list of logo's (tv stations, production companies etc) that got typed into Writing with symbols yesterday, then taped (since WwS has a verbal playback option) into the DSi over any perfectly typed epics of the FC crowd.

FWIW.... the real world, doesn't believe in it either.

kathleen said...

Land mines galore! Your Bobby is a smart young man..:) I was just having a conversation last night about how I have become less and less of a presence on the internet because of these land mines. There is a lot of black and white thinking.. I think that the internet..the anonymity of it-even if you give your name..makes it a convenient place to rewrite your history. I would never nor would I want to debate whether or not someone is on the spectrum-it isn't my place. However, I am finding that the minute someone says they identify-well..it is almost as if you aren't allowed to question any position that they take..they have all of a sudden become experts on the subject. How convenient-because really, who is going to argue? You will only be labeled as abelist and privileged.It is a lose lose situation. I identify with my kids-how could I not? The apples don't fall far from the tree. However, their very real struggles..far surpass anything I have ever experienced. I could not in good conscience co-opt their diagnosis to explain what others might see as quirky. What is very hard for me is when someone outside the community comes along and says "Wow-look at all these adults..they didn't have services and they have done alright." *sigh*
Good post Kim...although it in itself is probably a land mine..((()))

Dixie Redmond said...

It amazes me what people will try to deal with anything. Any time you see a title of "treating (fill in the blank) without parasites" is a clue that something is wrong. Yikes!

melbo said...

FANTASTIC!!!!!

Anonymous said...

As the Mum to a son on the spectrum.I take umbrage with those adults who now claim disability, after having careers, families, a full life. My son struggles with sensory issues, motor skills and language processing. He struggles with them now. He does not "fake" it as he would not know how. In other words, he could not possibly go about his life only to suddenly be severely impacted by these issues in middle age.To suddenly be able to say that he is tired of pretending. He does not have that option. It simply does not work that way.

D.J. Kirkby said...

As a person with autism who works full-time I am not to proud to tell anyone who listens that I am profoundly disabled. They don't believe me because i appear to cope well most of the time. I do myself a disservice I know but I don't think I truly have another option. The stress of work may be harmful to my health and wellbeing but so would not be able to afford a decent place to live and decent food to eat. I am tired f pretending and I am able to say so but I can't stop pretending as the consequences are too great.

K Wombles said...

I think there are many people with invisible disabilities--we tend not to vocalize how often these disabilities impact us, both because we know others don't want to constantly hear it and because we don't want to be judged as less capable because of it.

Between chronic pain issues, migraines, and significant gastrointestinal issues (IBS and GERD) and diabetes when I don't have it under control, some of my days are simply miseries I push through and only my family members will be aware of how bad a day has been.

I think there's a difference between choosing not to disclose (and we are under no obligation to disclose all of our issues) and then deciding one day that one has a particular disability.

There's no way online (and perhaps, truly, even in person) to figure out something as tricky as ASDs. Yes, sometimes it is abundantly clear and there is absolutely no mistaking autism when you see it. It's the folks on the borderline, with some traits, but not all, or with milder traits, that it's difficult--and there it comes down to a question of personality type versus disability. The DSM currently designates ASDs as disabilities, and research recognizes the broader autism phenotype in family members--where those traits become personality traits rather than disabling conditions.

I have no doubt that Rick and I both, and our extended family, can check the boxes by many of the traits--we've always said our quirks combined to give our children autism, but there's a vast difference between our quirks and issues and the difficulty they've caused us and the serious disability that my son struggles with and the social and communication issues my daughters grapple with.

K Wombles said...

This comment was in my email inbox, but isn't appearing in spam or comments to be moderated, so I'm going to copy and paste it here:


Anonymous has left a new comment on your post "Land Mines And Sour Grapes: Those are Metaphors":

You make it look like people can't be mildly disabled, or be disabled in anyway that does not fit your view of disability, like having a disability that allows for college life but with daily life difficulties or being middle-aged and having a family or life and finding out you are autistic. Burn out for autistic adults never happens I guess.
Disability is not that simple, autism is a really complex disability.
It also seems autistic people can't get to middle-age, can't marry, can't have kids, honestly it looks like we can't do anything while being autistic, if we are autistic and have success in anything we loose the autism, how does our brain changes like that I don't know, it just makes me really sad. Coping and learning to deal with autism/disability seems like an alien concept too, if you can do that you also loose or overcome or fake the disability.
It's terrible to belong to a population where no one is allowed to have typical success without being stripped of their place on that population.
Considering that autism was considered a type of childhood psychosis and was a diagnosis that wasn't much used I'm surprised that you think people learning they are autistic at middle-age is not quite possible, they couldn't be diagnosed with autism when kids so why the surprise?
As for all autistic people on the internet are self-diagnosed fake aspies that believe they are not disabled and have a quirky personality is such a old fallacy that it makes me tired.
I also think it's weird you say you are free to say your opinion (your truth) but at the same time says anyone that disagrees with you is a "critic" that hold their truth as "inviolable" and attacks people, I'm sorry to say but there is no way to win there in your logic if someone disagrees with you. This logic makes it anyone afraid to disagree because it will prove your point of not being able to speak up without having fanatics attacking you. Basicly it's a way to censor people while using the theme of free opinion. No win situation. Sadly it's a common theme on autism parents blogs together with another one I see that is: don't say your opinion (anything that goes against what I say) because it hurts the community, don't disagree because it hurts the community, even if what I say harms you.
I'm afraid if I will be seen as a person who can't be quiet and likes creating fights on the internet, your posts make it obvious that this is the case.
A disclaimer, I'm not a middle aged self-identified autistic.

K Wombles said...

Now I'm going to comment:

"You make it look like people can't be mildly disabled, or be disabled in anyway that does not fit your view of disability, like having a disability that allows for college life but with daily life difficulties or being middle-aged and having a family or life and finding out you are autistic."

How, precisely? I wrote that questioning whether someone who self-identifies is a landmine because there's no way to determine whether the person is on the spectrum or not.

I then noted that there's a chasm--an uncrossable divide being created by those who would view autism as a desirable, superior personality type and those who view autism as a serious disability.




In a follow up comment to D.J., I noted that many of us family members are on the broader autism phenotype, that we have traits that do not rise to disabling. I also noted that invisible disabilities exist, and provided my invisible disabilities. I'll add one I didn't disclose in the list, but that if you read my blog, you know about: anxiety disorder.

"I'm afraid if I will be seen as a person who can't be quiet and likes creating fights on the internet, your posts make it obvious that this is the case."

Did you miss my last paragraph?:

The one absolute is that if you are honest, forthright and speak your mind online, someone is going to jump in your shit and make sure to rally the troops to hound you until you capitulate after all but wetting yourself or that you slink away, afraid to ever speak your truth or speak out against what you see as clear wrongs. Never mind that these critics hold their truths as inviolable and that they should be free to speak without any fear of reprisal.

That reality has nothing to do with my post--I didn't mention names in my post--I didn't attack anyone. I wrote about the very real landmines in the online autism community and how most of them are no-win situations and my difficulty in maintaining my integrity in the face of many of those landmines.

Why exactly did you make that about you?

Anonymous said...

The level of hostility in the autism community is horrible and impedes any progress or any ability to have a debate on issues. I have a loved one with Aspergers and I get flamed and called ableist if I bring up problems that we have in our relationship due to Aspergers. Online, you have to either say that all problems with autism are caused by society/neurotypicals or you need to shut up. Any talk of treating autism or prenatal testing or suggesting that a woman should have the ultimate choice her body has got me Godwinned many times.

I don't care whether people want to identify themselves as having autism but my problem is that those that have it and to them it's merely a "difference" and who insist that they don't have any problems other than neurotypical people existing shut down the debate. I really do want to understand and learn more but it's hard when anything but absolute adherence to the "autism is wonderful" gets you immediately ignored or flamed. If the autism community wants to promote real acceptance and awareness they can't just be hypocritical and only accept the viewpoints they agree with, it does no good for everyone involved.

Phil Dzialo said...

An excellent statement about reality! I am not in the ASD community nor my son from whom I care 24/7 for the past 14 years. He is severely disabled, non- ambulatory, non-verbal and non just about everything. I do have many FB friends on the ASD groups.
I can assure you that the divisions, the hostilities and positions reflective of righteous indignation pervade the entire disability community. It appears that so many bloggers are possessors of the "truth." There is often little room for personal belief, personal opinion and areas of life which are "gray."
We often do each other a disservice by negating well thought out opinion because it is inconsistent wit our small universe of belief. Reality is rarely "black and white".
I appreciate your balanced and amicable opinion. It is good to visit here!

Emmett said...

Warning- Part 1 of a long, long response.

:et me interject with some insights as a self-advocate who didn't 'wake up to autism middle-age', but was diagnosed onto the spectrum (AS/HFA- once the DSM-V comes out, I'll be ASD, lvl 1- had the DSM-V criteria been around when I was young, I'd probably have been ASD lvl 2, but I've developed some of my slower skills since then and am more independent now). I speak as a self-advocate from a family with a high incidence of autism, including a deceased profoundly autistic cousin, and numerous family members on the more-easily-functioning end of the spectrum. I speak, also, as a self-advocate who had a very, very hard time growing up on the spectrum, being placed in institutional care more than once, having constant (and unwanted) medication and supervision at school, and experience a litany of hardships that I really don't feel like reciting right now to confirm my pedigree is a real live ASD person. Finally, I speak as a self-advocate whose views have matured and changed over time, and who is willing to criticize some aspects of the self-advocate community- as I am willing to criticize aspects of the parent advocate community and misinterpretations that are being made of self-advocate positions.

When you talk about your frustration with the rhetoric of Autism Speaks, that's the same rhetoric self-advocates are annoyed with. We're annoyed with being called tragedies, burdens, and epidemics. We're annoyed with people acting like this aspect of us, this condition we exist in, is equivalent to or worse than AIDS or cancer. We share that frustration, and it's the root of a lot of our conflict with AS- that, and their tolerance of woo, attempts to sue critics into silence, and lack of self-advocate voices in their organizational hierarchy.

Again, the 'I don't look at my kids as tragedies to be prevented or as kids in need of a magic pill'. That's... basically *exactly* the self-advocate position, right there. We are not tragedies. We are not in need of a magical pill. We are often in need of accommodation, appropriate and client-centered therapy, and peer support to help us make the best that we can with the minds we have, but we do not want to be 'prevented' or 'cured' with a magical pill (the 'cure' thing being kind of ridiculous anyway, because it's a pervasive developmental condition the roots of which appear to be in the very wiring of our brains, so you can't really just separate 'the autism' from us and leave some hypothetical normal person who was 'trapped' by that autism in our place, but I digress).

Emmett said...

(Part 2)

Now, the self-advocates who identify in their middle age- first, we need to avoid self-diagnoser-shaming. I did this once, and it's really not fair. There ARE some phony self-diagnoses (like that twit, Moby). There are other legit ones. A lot of people weren't kids when AS and HFA were being recognized, or may have been misdiagnosed as kids- a lot of autistics in years passed were likely misdiagnosed as simply having profound intellectual disabilities. I have an uncle who very clearly is more stereotypically on the spectrum than I am, but he's undiagnosed- because he grew up in the 1950s. I grew up in the 1990s- diagnosis was available. But, even for those who grew up in the 1990s, diagnosis is not always available. Poor people- disproportionately people of color- lack access to diagnosis, and while a gender skew does exist, it is exacerbated by the fact that women on the spectrum get diagnosed at a lesser rate. All of these can stand in the way of an official diagnosis, and those who are unable to get an official diagnosis but are nonetheless on the spectrum deserve understanding and acceptance- otherwise, the autism community becomes a very classist place. That said, again, there idiots (like Moby) who claim to be on the spectrum but aren't, and there are probably quite a few people who make honest but misinformed self-diagnoses. This is a problem. The only solution is more access to psychiatric care and evaluation.

Now, you claim that there's this uncrossable chasm, and I don't believe that. There are some naive self-advocates, newly reveling in the self-advocate community, who take things too far and create an echo chamber that convinces them of some idiotic stuff- I'm looking at you, 'autism is evolution' people and assorted Aspergians (refering to the subculture/ideology, with which I have disagreements, not to all people with AS). But, not all of it is some uncrossable chasm. I'm a self-advocate. I recognize that as a high-functioning autistic person, I face difficulties. I need help in some things- for example, social skills, independent living skills, and time management (I get engrossed in small, irrelevant things too often and write long, rambling, unfiltered things replete with self-referential attempts at humor). I need accommodations. I have areas in which I am disabled. I also recognize that other people, such as my late cousin and many of the children of parent self-advocates, have difficulties more profound than mine, and often more profound than the worst of my difficulties at my worst time. I recognize that.

I also recognize that autism is not a thing that can be separated from the rest of me, that there is no 'normal' person 'trapped' by the autistic person, that there is only me. I recognize that autism is not an entity of its own, but is a thing that exists only through me, and that you because can't talk about autism without talking about autistic people, no major discussion on autism should occur without the input of autistic people from all parts of the spectrum as best as they are able.

Emmett said...

(Part 3)

I recognize, also, that while I am, indeed, a person with a disability, that social context is not absent from that formulation and that the dominance of the neurotypical way of thinking and acting as the norm does place me at a disadvantage just as an NT in a world of people like myself would be at a disadvantage. I recognize that a huge part of what holds me back is a mismatch between what is expected of me, and my abilities- but that this mismatch comes not only from my condition, but from the placing of social standards in a way that is tailored to the needs of the neurotypical majority. I try very, very hard, every day, to meet social expectations that have been set for me based on a model of person different from the person that I am. I reach across the aisle to neurotypical people all the time, doing things that I find uncomfortable, nonsensical, and absurd to make them happy. In asking for accommodation or acceptance, I'm just asking for a bit of reciprocation.

When I say I ask for reciprocation, of course, I in no way mean to disparage the care and sacrifice that parents of autistic people make- or that my own parents, or my grandparents, or my aunts and uncle have all made. Raising an autistic person is hard both for reasons intrinsic to the nature of autistic people and for reasons socially constructed by an ableist society. I recognize the wisdom and the necessity in trusting the parents of profoundly autistic kids to take initiative in care when the profoundly autistic find themselves unable to do so- while also recognizing both the necessity of listening to every individual autistic person and whatever communication they can manage as much as possible, and the importance of listening to the entire self-advocate community when seeking to understand autism and autistic people. I, as myself, cannot speak for an individual autistic person who is not myself. But, collectively, the autistic self advocate community can come to represent the general mood that autistic people have towards certain issues, and that should definitely, absolutely be considered, be brought to the table, and be cherished- just as we should consider, cherish, and value the contributions of parents, because their experiences, concerns, frustrations, and needs matter.

These points can get lost, when self-advocates become (quite rightfully) enraged at parents saying things like "I wish my kids had cancer", engaging in harmful woo, or standing silent while the media makes a saint out of another parent who kills their autistic kid. People have a right to be pissed at that sort of rhetoric, treatment, and victim-blaming, but self-advocates need to not allow those things to stop us from listening to parents. The points can also get lost when parents become (quite rightfully) enraged at self-advocates claiming there's no real disability going on with a child or adult who is self-harming or lacks basic independent living skills and needs full time care. Parents have a right to be pissed at anyone who claims that's not a disability or that it doesn't impose any real emotional or physical toll on the family, because it does. But, parents need to not allow those statements to shut down dialogue with self-advocates. Just as our parents were our greatest resource growing up (barring those of us whose experience with our parents was one of abuse), we need to be a resource not only for ourselves and our fellow autistic people, but for parents and communities as well.

Emmett said...

(Final part)

Now, on to one final point (damn, this is getting long).

Farmwifetwo, I reject your assertion that any person with a degree or a family cannot be autistic. I am autistic. I am diagnosed, and fit the criteria for the DSMV diagnosis as well. I have had significant difficulty and still have significant difficulty. My condition does impact my day to day life, on every level. I am also a college student. It has taken support, and a bit of accommodation, and could only happen after a lot of hard work on skills that I still don't have mastered, but I am doing it. Now that I'm meeting some damned success in my life, you tell me I can't be a 'real autistic'? That's a Catch-22; if an autistic person has any success, he can't really be autistic, thus maintaining the 'fact' that autistic people can't have success. Is success an uphill battle? Absolutely. I'm facing an unemployment statistic for people on the spectrum well over 80% (yes, even if you only count high-functioning people). I'm facing severe problems with independent living and horrible social skills that have left me without the support network of peers most college students rely on to deal with stress. I'm dealing with a growing depression, fed largely by that undealt-with-stress and social ostracism, that I can't get treated because the only drug my insurance company will cover for anxiety is ineffective, habit-forming, and has terrible and humiliating side effects (I know because I already spent ten years on it before battling the withdrawal symptom and getting off of it because I couldn't handle it any more). So, yes, it's an uphill climb- if you don't believe me, you can ask my parents or the disability office on campus. Yes, it's difficult. I'm not sure if I'll graduate on time. But damn it, I'm going to graduate, and I am going to do it as an autistic person, and I dare you, I *dare* you, to come to me when I step out of those doors with my degree and tell me I'm not 'really' autistic.

Anonymous said...

To add: This situation sort of reminds me of the issue with PETA in the animal rights community. While they have a lot of good points, they sabotage them by dwelling on minor points, taking extreme positions, being highly hypocritical and having a black and white - accept all of our platform or you're evil, stance.

Whether someone identifies as autistic, has been diagnosed with autism or isn't autistic is a minor point - everyone should be part of the debate and no one's viewpoint should be discounted. At the same time, the discussion needs to get away from extremism where some parents get angry if anyone has a different opinion of their child's needs and behaviours, or autistic people who throw the ableist label to any non-autistic who disagrees with the idea that Autism is only disabling because of societal prejudice.

There's never going to be debate or progress as long as people continue sticking to their positions without having the intellectual integrity to question them and to consider the viewpoints of others.

K Wombles said...

I appreciate that, Phil!

K Wombles said...

Emmett--

I appreciate you visiting Countering and commenting. I feel that your comments are off-topic, as concerns my post--I didn't discuss self-advocates, and I didn't debate anyone's status on the spectrum. I noted it was a land mine, and it is.

Not everyone is honest on the internet--it's incredibly easy to invent identities and it would be hopelessly naive to believe that absolutely everyone is who he or she claims to be--but that, too, is tangential.

There are innumerable divides in the autism community--and that is one of them--it's not one I invented--ask many of the self-advocates and they'll be the first to note that there's a tremendous divide between parents like those at Age of Autism and the self-advocates who are a part of ASAN.


To the latest anon, you did notice that this post was about many of the different land mines in the autism community. Fascinating that some of the commentators appear to be hyperfocused on one single paragraph--a paragraph I didn't even offer my own personal perspective on, but noted that it was one of the land mines and served no good to even go there.

As I said, fascinating.

Emmett said...

(Just one part, sorry for being so wordy- I reiterate points a lot)

I agree that there's an unbridgeable chasm between ASAN and AoA, but AoA is full of vaccine conspiracy theorists. There's an unbridgeable chasm between Woo True Believers and reasonable people in general. That doesn't mean reasonable self-advocates and reasonable parent advocates can't talk to each other or reach common ground. In fact, we have common ground on the vast majority of the what you wrote in the OP here on the JRC, worms, FC, and AS gatherings. I chose to address the one part that I did think needed further exploration.

I'm not really sure how my posts were off-topic. To me, talking about 'people who wake up to their autism in middle age' and the 'unbridgeable chasm' between 'those who view autism as a serious disorder' and 'those who are rewriting it into a personality type' seems like a discussion about self-diagnosers and self-advocates. You noted it was a landmine, and it is- hence the discussion of the controversy.

My comments on these issues were meant to foster reconciliation between parents and self-advocates. I spent my first post pointing out ways in which your own stated positions mirror self-advocate positions, before moving on to addressing the self-diagnoser issue, and spending the rest of the second and third posts providing testimony, personally, from a self-advocate to show that the position of self-advocates who accept themselves as autistic people and who cry for more self-advocate input in the discussion, is not incompatible with the position that autism is a serious disability, and that the concerns, needs, and perspectives of parents, caretakers, and family need to be considered. My final post was, of course, directed at someone else entirely and was addressing a claim that had been made by that person.

So, through my three posts, I did attempt to address (albeit in a way that, in usual unfiltered fashion, included points whose relation to the main point was largely tangential or that attempted to explore the general subject from different angles) the points made in the part of your OP that I found needed more examination- the same part that pretty much everyone else who has commented here also found worthy of further discussion.

My overriding theme here, that I intend to convey, is that while fringe groups are at an impasse and the relationship between self-advocates and parent advocates is controversial and 'landmine'-ish, that we can still probably find common ground. The point of my first three posts was to explore that relationship and find common ground or mutual compromises that could be made. In this, I feel I was not off-topic, but respect your right to opine that I was.

purplewowies said...

FW2, I love that you think that because I'm going for (and hopefully obtaining) a university degree, this doesn't affect my day-to-day life.

That was sarcasm.

I can ostensibly "pass for normal," but that doesn't mean I AM. I'd be failing horribly if it wasn't for the accommodations afforded to me. In fact, I didn't have accommodations in HS because my dad wouldn't sign the IEP, but I wouldn't have even graduated last year if they hadn't accommodated the fact that I was not able to secure a mentor for my Senior Project. Even after trying for ten months, I hadn't gotten one, probably mostly due to my social disabilities. I can't speak to someone I don't know on a phone, so I was initiating contact through email. I'd get one reply, then when I asked for a good time to meet, I wouldn't get a reply back. I tried asking six different people (including a person I DID know, who didn't get back to me). If they hadn't let me present without a mentor (a requirement of the project), I would have gotten a 0, putting my English grade too low for me to graduate.

So, yeah, even though I'm not the "severely disabled" you're trying to insinuate are the only ones worthy of services, it doesn't mean I'm not disabled, and it doesn't mean I don't deserve accommodation.

K Wombles said...

Emmett,

Given that I never stated reasonable people can't work together (and the fact that I co-run the Autism Blogs Directory with Kathleen, with over 1000 blogs, forums and websites, with around 200 of them being specifically on the spectrum), I'm struggling to figure out where you got the idea that I didn't think so. Indeed, that was not the point of my piece at all.

My point was that the community is full of land mines and that some people are only looking for a way to make sure their perspective is the only legitimate one, that people risk tremendous censure for speaking their minds, while those who censure them believe they themselves should be immune from any scrutiny. There is no way to avoid all the land mines, so we should be selective in the ones we choose to step in. I specifically said one of those land mines that was a no-win situation was that of questioning self--identified autistics and whether they were really on the spectrum--plenty of people wade through that land mine and un-diagnose bloggers. Maybe you were not aware of that?

Over the years, I've seen way too many dogpiles by the varying factions (and participated in them in the past when I believed it was important), seen people's livelihoods threatened (had my own threatened), all because someone was intent that those they disagreed with be silenced. Silencing people isn't acceptable. That's one reason the blogs directory accepts all autism-related blogs on the directory.

It's not just the fringes that engage in that behavior, unless you think the neurodiversity parents are fringe elements?

I'm not clear why you read my post from the particular slant you did, but I assure you, I believe in working with anyone who wants to make the world a better place for my children. Perhaps it's possible you read my post out of context or read into it things that were not there or that I am reading too much into your comments.

Kay Bailey said...

Hi, I was reading the thautcast facebook page today, and it had a post about your blog. I asked over at the thautcast page if maybe people were reading your paragraph wrong, but no one responded to me.

I thought I'd ask, maybe there's something I'm missing here? I don't understand why anyone would pick one paragraph and ignore all the rest.

I read all the comments here, too. I see that some parents must not think that if you can go to a uni, you can't also be disabled. I have Asperger's, but I don't think it makes me disabled and I don't need any help at school. So maybe I don't need the label anymore. I almost never use the label now--I had it as a kid, so that I had help with things.

I think it makes me different, but that's okay. Having Asperger's or whatever people want to call it lets me focus and not mind missing parties or hanging out with friends. It lets me have a 4.0, too.

It sounds like there are a lot of landmines in the autism community and that it can cause a lot of stress to put stuff out there. It really looks like you were right in your last paragraph.

I guess I just don't understand why people beat up on each other. It isn't very logical. It's why I stick to my fractal websites and math forums. I just don't see the point in this drama. I think you should just skip the landmines if people aren't actually going to read what you really said.

autismandoughtisms said...

Awesome post Kim.

I had a couple of recent posts where I unintentionally upset a particular subset of the autism community, though I tried to explain - ad nauseum - that they'd misunderstood me. That I wasn't saying what they claimed I was saying at all. Which quickly degenerated into them declaring that my "attacks" on their comments were attacks on them because they were autistic, which was ridiculous, it had nothing to do with them personally at all! It ended up in a progressively-more-nasty snowball of attacks on me (and even my son!) which had nothing to do with the post anymore, no matter how much I tried to return the discussion to the actual topic, and away from personal politics.

I got so upset at the whole mess that it made me want to quit blogging, and not for the first time either. I gave myself time and I'm feeling better now, but by golly this blogging thing can be tiring sometimes. I really appreciate the wisdom and insights you have, that come with years of dealing with this sort of crap, but you don't let it stop you doing the right thing and saying what needs to be said.

Anonymous said...

I apologise if I went off topic. I meant that as an example. Each of the land mines in the autism community seems to have an orthodoxy attached, and splinters in the community that do not tolerate dissent. Which holds true for the anti-vaxxers, the debate over Autism Speaks, the debate over self-identification, even something as semantic as person-first language.

K Wombles said...

A&O, I completely relate. Sometimes, it just doesn't seem worth it, but most of the time waiting it out is worthwhile.

Anon (Emmett?), no problem. That's a pretty good summary of my post: land mines everywhere and no-win situations. It's enough to make people think about taking up scrap-booking. But if we only stay in our own little corners, we never accomplish anything. It's possible to disagree on some positions and still work together on the ones we agree are important.

Emmett said...

"Maybe you were unaware of that?"

Why, yes, Kim, as an autistic person, who frequents autism blogs and sites, I was unaware that people attack self-diagnosed people. Completely oblivious. Thank you for explaining that to me.

You know, whatever. You seem intent on answering any discussion or criticism of your post with 'I'm just saying there are land mines' and seem intent to avoid any discussion why those land mines exist. We all get that there are landmines. Nobody's denying that there are. But tiptoeing around them and refusing to discuss the actual issues that cause them to be landmines does nobody any favors. I tried to reach out, I tried to show you why your assertion of this alleged unbridgeable chasm was false, and you've gotten all weird, defensive, and condescending about it, which I guess sort of makes you right- if your response to self-advocates is to shut down discussion by claiming everything is off topic and refusing to discuss the one part of your post that everyone (including parents) has been commenting on, then yeah, I guess there must be some sort of unbridgeable chasm forming. I don't have the time or the energy to deal with that right now.

K Wombles said...

Emmett,
I have no idea what you're talking about.

Me said...

Really good and timely post Kim. Iv'e become increasingly reluctant to engage in online dialogues. Sites I once turned to for information and connection have become places of anger and condescension. I can manage without those resources now, but i feel for parents at the beginning of their journey raising a child/ren with autism. If they were to seek information that is compassionate and accurate where would they go? Very few resources I can think of that offer that now, specifically because of the land mines you mention. An innocent question, badly worded and you will find yourself being accused of all manner of labels.
It's a sad state of affairs but perhaps inevitable given the complexity of autism? I don't know, I just feel overwhelmed by frustration and resignation some days. Sigh!

autismandoughtisms said...

Gotta say, as a third-party reading Emmett's comments and complaints about the post and Kim's replies, that Emmett appears to be responding to points that Kim didn't make, and in fact has pointed out already that she didn't make (such as the unbridgable chasm complaint, and the self-diagnosing issue which she said is pointless engaging in).

(For what it's worth, I wrote a post on the topic of attacking people's diagnosis a while back too, which I think addresses some of those broader issues here: http://autismandoughtisms.wordpress.com/2011/04/15/autism-ad-hominem-attacking-diagnosis-in-the-disability-vs-difference-debate/ )

Dixie Redmond said...

OMWORD.

Kim, I like reading your blog. You said some things a while back that were ouchies for me (because they were true). It was essentially that we can't expect other people - society, school, etc - to solve the issues our kids face. I'm paraphrasing badly.

About 6 months ago I started reading all kinds of blogs re autism because I needed help in helping my son. But I was in no way ready for what I experienced. I was blogging, but decided to abandon my "autism" blog, because I realized I didn't need the additional stress that it might bring in forms of comments. I've found that I'm even worried about using the phrase "helping my son" at times. Which is counter-productive for what my job is as his parent.

Anyway, I just want to say your writing made me think about some things differently and has helped me face some big parenting transitions coming up proactively instead of just having anxiety episodes about them.

Dixie

K Wombles said...

Dixie,

Thank you for your kind words. I know that the online community has always been contentious, but it feels worse lately--maybe that's a product of cumulative stressors from online, but it still feels that way--that everything is a land mine--look what a land mine this post turned out to be.

There will always be people out there looking for a fight, for a reason to be angered, and it's unreasonable to believe that we will be liked by everyone, but after my experiences with Age of Autism and my mistaken belief that I had to address their posts by name, their commentators by name, or people wouldn't realize where they were wrong, after I realized that I was actually adding to these struggling parents' stresses, I realized that I needed to change from reacting to specific posts and specific people (for the most part) and move to looking at the actual issues in general, to try not to base my posts on specific bloggers or specific pieces but on underlying issues.

I can't help what people choose to read into that, if they believe I'm talking about them. I can only state that I try very carefully to never have a specific person in mind. I let the issues simmer, let time pass, and if the issue still matters to me, I pick it up.

People are walking around on tippy-toe afraid that they will be dog-piled, and with good cause. It's often a nasty free-for-all, and that serves no good purpose.

Once we started the autism blogs directory and we added all kinds of viewpoints, I had to change. How could I put those bloggers on the directory, then write about them negatively?

You can't please everyone, as "me" and "a&o" have shared here. When we find ourselves in the middle of a dog-pile we have to decide how much we can handle and alter our course accordingly. If we're stressed out because of strangers online, we're hurting our reserves of energy to help our children.

Best wishes to all the commentators who chose to engage in dialogue, whether they felt it was productive or not. :)