NTs Are Weird

This has been late in coming, but that’s in large part because I wanted it to be a considered post, not an impulsive one. Officer Johns and the millions of people affected by the holocaust deserve that.

On June 10th, Officer Johns was at his post at the United States Holocaust Memorial Museum. It’s a sad testament to the state of the world that, at a museum dedicated to proclaiming the horrors of hate, that a guard would even be needed. But, sadly, guards are needed there. Spotting a visitor whom he thought needed assistance opening the door, Officer Johns unknowingly opened the door for his killer. The killer (this blog’s policy has long been to not deem people committing murder to be worth of a name, but rather place emphasis on remembering the victim) shot Officer Johns with a rifle he was carrying. Officer Johns died shortly afterward.

It amazes me that someone, such as the killer in this case, could have such hate for an entire group of people (”Jews” in this case, although Officer Johns was not Jewish, he was associated with an institution that remembered an atrocity that affected the Jews more than any other group) that murder would be justified in their eyes. Yet, in some people’s eyes, murder is justified in that case.

In some ways, Officer Johns was the six-millionth and one victim of the holocaust.

I’ve been to the US Holocaust Museum several times - it is an extremely sober place to visit, but I encourage anyone reading this that gets the chance to visit. The act of violence that took Officer Stephen Tyrone Johns’ life shows us all that places like the Holocaust Museum are vital. Nothing could more succinctly demonstrate the need of such a place.

The museum is collecting donations for Officer Johns’ family. 100% of the money will be given to Officer Johns’ family. I encourage all who are able to consider a donation, not just to financially help a family who has lost a father, but also to show the family and the world that hate cannot be tolerated.

My fiancee noticed something as we were preparing for our wedding.  Everyone participating as part of our wedding party is disabled in some way (we didn’t seek to exclude non-disabled people, really! We just seem to hang around disabled people more often).  Yet, everyone has different disabilities.  We have people who are blind, who are autistic, and who use wheelchairs.  One member of the wedding party can walk fairly well, but can’t *sit* well (he can’t get up from a sitting position easily).

In particular, three of the people participating were having significant difficulties in just *getting* to our wedding - yet, all three had different disabilities (one is blind, another autistic with movement disabilities, and another is the person who can’t sit easily).  The one commonality among all three is the inability to drive an unmodified automobile.

Because of where the wedding is being held, a small town in western Pennsylvania, there isn’t exactly good mass transit or long-distance transit connections.  So I’ve seen first-hand how difficult (and expensive) it can be if you can’t just hop in a car or plane.

I’ve long said that the thing I most desire autistic advocacy organizations to work towards, after universal healthcare, is transportation.  Between health care and transportation, there are huge disincentives towards working built into society.  After all, it’s hard to work in most jobs - especially entry level ones - without good transportation.  Bosses expect you to show up on time, every day.  That’s easy if you control your transportation.  It’s impossible if you are at the whim of transit agencies, support staff, and family members for your transportation needs.

Certainly some of us can and do drive (I write this from a cafe where I’m eating my lunch - I drove here on my scooter).  In fact, I think too often parents (and, sadly, autistics themselves) have dismissed driving as “impossible” just based on the stereotype of what autistic people have trouble with (”processing sensory information”), yet I find driving far easier (and less likely to result in injury - the movement is constrained and more mechanical) than walking.  And I suspect I’m not alone.

But not all of us can drive (and those of us who can’t may not be able to forever - even autistic people get old!).  We need to advocate for transportation alternatives.  How would you get across the country if you couldn’t fit in an airline seat because you can’t stand up if you sit in it?  How would you get to work if you couldn’t just hop in your car (or walk or even walk to the corner and take the city bus)?  And how is this different from being in an institution, if you can’t realistically go anywhere?  We need to make disabled people part of society.

I visited the US Social Security office this week.  Without any appointment, I was in and out of the office, with what I needed, in 20 minutes.  That’s a lot better experience than many have with the US Social Security system. That got me thinking…what was different?

At first I said, “Oh, I had a simple request: I just wanted a replacement Social Security card. That’s probably a pretty common request.” In other words, I thought, “This is easier for them.” But is it? Or is something else going on?

Why would a replacement social security card be “easy” but replacing a lost social security check, getting assessed for disability status, or having to prove you were still disabled (as your permanent disability is still permanent - no divine healing has yet occurred)? Aren’t these other things pretty “routine” too for Social Security? Anyone who has done them knows they aren’t, though.

Then I think I figured it what the deal was. I was like the people behind the counter. This white, middle-class, somewhat educated, literate, English-speaking person was doing something that the very people behind the counter might do - asking for a replacement card. In fact, it wouldn’t be much of a stretch to see someone like me on the other side of the counter - I was even a government employee for a while, after all.

I think all of us begin to assume that something is “routine” if it is “routine” for ourselves. And that’s the key. A replacement card is easy because that’s something someone behind the counter, or in management at SSA, might need. It’s “routine”. And many other things are not “routine” for the people at SSA to experience themselves. In other words, they’ve built a system for people just like them - not like their actual “customers”.

Maybe I’m wrong about this, but it did make me think.

Online, there is often a very strong divide between some autistic adults and some parents (I recognize that there are people who are both autistic and parents, and this obviously doesn’t apply to them).

I think I can sum up the divide simply. Autistic adults generally want their rights respected, both in the short-term and in the long-term. Parents want the best possible services and supports for their children.

Neither of these is bad. And these goals aren’t at war with each other.

Yet some parents have adopted a pragmatic view to services that is politically harmful to adult autistics (witness my previous post about medical insurance covering services - something that politically is harmful to adult autistics, but helps some children in the short-term - until they grow up and lose private insurance). And some autistic adults have over-simplified views of autism and the difficulties parents have raising autistic (or, often, any) children.

Obviously, holding the view that someone’s child’s immediate need is more important than what happens to autistic adults is rather selfish, self-defeating (kids do grow up), and frankly discriminatory. And often this motive of selfishness is attributed to those who oppose what this type of selfish parent does (isn’t that ironic?). After all, the opposition must be because the adult wants something.

And the view of some autistics is that anything that even sounds like what the education they received is obviously “abuse” - this is something that is borne from years of abuse they’ve themselves experienced. As is typical with abuse, benign concepts become “codewords” for abuse. Yet obviously parents who are not abusing their kids don’t typically react well to being told they are abusers, especially when they are sincerely trying to give their best to their kid.

These views need not be at opposition though. Parents can and should (and many do) listen to adult autistics. And, please, if you are a parent, don’t sacrifice us or your child’s long-term future for the short-term immediate need. Let’s find ways of accomplishing the change your child needs today, without hurting people who are not children!

And adult autistics should be very cautious about accusations of abuse. True abuse needs to be reported to the (for your area) appropriate authorities - not argued about with the abuser online. But we also need to recognize that education is not the same as abuse, even if these things were equivalent for some of us personally. We also need to recognize that actually raising a child is a bit more complex than the theory behind it would lead us to believe.

I’m sick of the divide. I’m sick of us being at war with each other. I also think we need each other, or we’re all going to lose.

AND…to the autistics and parents alike who aren’t falling into these traps: THANK YOU.

Recently, due to some school systems not funding the program of choice, several bills, in various states (in the US), have been created. The idea is that autism treatment should be funded as part of people’s private medical insurance.

Sounds good, right? Who could possibly oppose this?

Well, I do.

I oppose these laws for several reasons:

1. They often name specific therapies, such as ABA, despite lack of evidence of effectiveness. The problem with this is that if we find better therapies, or we find that a therapy that has little evidence (but is named specifically in the law) is actually harmful, we are still setting up an environment where legislatures of the past have decided what is good for autistic people - rather than autistic people and science deciding that. It builds an inflexible framework that will be very difficult to change as knowledge is gained.

2. It establishes certain treatments as medically necessary. By naming specific therapies, it establishes the idea that these therapies are in fact the best practices in autism - and in fact medically necessary. This implies that those who don’t subscribe to these therapies for their children are in fact abusing them. One strange thing I’ve noticed among parents of autistic people is that there is a vocal subgroup who insist that - despite lack of clear evidence - their chosen therapy is the best for all autistic people. We don’t need to be giving this idea credability. Even if some parents think ABA is the only possible good treatment for autism, we don’t need that written into law as a valid medical treatment for autism - because, among other reasons, parents who don’t give their children ABA are not abusing their kids - it isn’t medically necessary.

3. These laws medicalize education. The therapies supporters of these laws want covered are things like speech therapy, ABA, and life skills training. These are not medical things - they are education. Teaching someone to talk, helping them learn social skills, or showing them how to interact with the world is education and should be funded in that manner. If the education system isn’t doing things right, let’s focus on changing that rather than creating a brand new medical way of providing what education isn’t. Even if someone learns differently, learning is still education - and we need an education system that respects differences. The best way to accomplish that is to keep education within the education system, rather than giving them an easy out to avoid educating kids (it’s the kids’ therapists’ problem).

4. It is racially and economically discriminatory. Private insurance in the US is most likely to be held by fairly well-off whites. Unlike education, which has a goal of being available to all (I recognize that it often falls short of this, but it comes closer than private medical insurance), private medical insurance most decidedly isn’t available to all. We need the supporters of these bills - especially the ones who want them to pass because it would help themselves - to seriously consider those it won’t help. Do those children not deserve the things your children do? That’s why we need to fund education through education.

5. It medicalizes autism. Autism is not a medical condition. We are not sick, not diseased, and in fact may not need any “treatments” of any kind (whereas a sick person would be helped by a theoretically perfect treatment, we might not be). Now, I’m not saying medical problems shouldn’t be treated - just that autism itself isn’t a medical problem. I’d 100% support laws that prevent insurance companies from calling medical issues “autism” and refusing to pay for them. I also 100% support the idea that comorbid conditions should be treated when they are medical.

6. It ignores adults. Most adults on the spectrum don’t have private insurance. It’d be nice if the adult autistics were considered in any grand plan.

7. The government should have responsibility for educating disabled people. We should not give the government an “out” to quit funding disability accommodations, therapies, and equipment. This is nothing more than a cost savings attempt by your government, to give you less for your tax dollars while raising the amount you have to pay for medical insurance at work. Seriously.

Now, I’ll be the first to admit we have problems with how autism accommodations, therapies, etc, are funded in the US. And we should work to change them. But, please, let’s fix them right - let’s not create a system where we medicalize education, ignore people who aren’t well-off and white, and include adults.

I’ll give some suggestions:

1. Disability-related therapies, equipment, and services shouldn’t be funded by medical funding sources - not medicare and not privately. They should be funded by a specific program available to all, not just the people who belong to a class that is politically popular right now. This should probably be part of social security disability or part of a new program geared specifically for disability.

2. Fix social security’s “deny first, ask questions later” policy. I don’t think I need to explain this much more.

3. Remove income, work, and family restrictions from social security. Disability benefits for services, therapies, and equipment should generally not be means-tested. We should not encourage dependence upon the State by making it impossible to earn money.

4. Universal medical care - not to cover autism, but rather to allow autistics who have other medical issues to get that “first job” which probably doesn’t cover medical expenses.

5. Removing the bizare funding tiers in social security - if I was disabled as a child, now live on my own, but my father worked until retirement, and is now retired, I’ll get a different benefit than if my father still worked. This is bizare. In addition, I shouldn’t have an implied reward for “overcoming my disability” and working (someone who works and then becomes disabled typically has a larger disability benefit) - this propagates the wrong idea that it is morally better to sacrifice your health to earn money, rather than recognizing that everyone has a right to a reasonable existance, even if they can’t work.

6. Funding schools properly, including at the state level. It’s time to stop letting the states blame the feds for everything - ask them to pay up, since they so quickly admit the feds aren’t paying. Isn’t the State’s job one that is to make sure that people don’t slip through the cracks? Shouldn’t the State fund something, and isn’t education worth being that something? After all, they take your taxes too.

I could probably think of others. But the solution to disability funding most decidedly isn’t private insurance.

I guess if you hang around a bad crowd too long, things rub off on you.

I’m seeing that happening among the autistic advocacy blogosphere.

Seriously people: We need to treat each other with respect. Just because the other guy doesn’t, it doesn’t mean that our message is more likely to sway people if we are jerks too.

Seriously.

And don’t respond by telling me that autistic people are blunt. I know that. But there is a difference between blunt and jerk.

Why does it matter? Well not because we’ll sway the jerks on the other side. Instead, we need to be decent to people because when we aren’t - even when it is our “enemies” that we aren’t decent to - our legitimate opinions get dismissed by people who aren’t in the fight (a much larger number than those in it).

So, please, some respect here.

I think there are several areas where advocates get off-track with autistic advocacy.  I’ve written about one many times - the anti-anti-vaccine focus to the exclusion of other topics (it’s sad to me when someone who overtly attacks disabled or autistic people is a member of the “autistic advocacy” community simply because they agree with our community on vaccines not being the source of autism - it seems like we’re fousing on the minor points, not the major ones).  Civil rights is where, in this autistic’s view, attention needs to be paid.

Yet civil rights are often ignored.  I think there are several reasons for that, but the primary one is that autistic people are the only major stake holder in support of civil rights for autistic people.  I’m not saying others don’t support our cause - they do - but as a cohesive “thing”, autistic people are fairly alone when it comes to civil rights.

Schools and governments - the main areas where advocacy is occurring - are not trying to further civil rights.  They may be trying to further public health, education, or, most importantly money.  And for too long, they’ve been determining the context upon which the conversation about autistic civil rights must take place.  That needs to stop.

An example of this “context is everything” is in the area of education.  Ask an educational commission, legislature, or school board about why autistic people are denied basic civil rights (the right to communicate, the right to inclusion, the right to be safe from abuse, etc) - and you will hear one answer: We don’t have the money.

It’s strange, though, because no other civil rights battle is focused on needing money to respect someone’s rights, even when respecting those rights does have a financial cost.  No other battle has so-called supporters claiming that they would respect our rights if we paid them enough.

Some of the battle is a side-battle that is completely irrelevant.  Does the State or the Feds pay for special education?  Frankly, who cares?  Other than the States (trying to get the feds to pay, so they don’t have to raise State taxes) and the feds (who want to get the states to pay so they don’t have to raise federal taxes), truly it doesn’t matter.  But it is important to those who are dealing with education finance all day, so other debates get hijacked - and parents and others get, almost, threats.  Get the (state or feds, pick one) to pay for this, or else we’re going to do the wrong thing (yes, I know this is a US-centric paragraph, no need to remind me - substitute the appropriate side-battle for your country).

We need to get the conversation turned back to civil rights.  Schools spend a substantial part of their day (probably more than any formal subject) teaching about other people’s rights.  Seriously.  “Don’t throw scissors?”  “Don’t hit her.”  “Wait your turn.”  “Everyone needs to be quiet when someone else is talking.”  Because they spend a huge part of their day on this, that means also a huge amount of money.  Yet it is seen as essential - how could you teach ANYTHING without teaching these things?  You couldn’t.

There are other areas of civil rights which aren’t necessarily funded.  Schools in a high-crime area may have additional security requirements that other schools don’t.  But not placing these security measures in place will reduce the ability of students to learn - and penalize some students for no reason other than they happen to live in the “wrong” neighborhood.

In the US, we also pay to bus students to class.  I know some students who would ride the bus for 2 or 3 HOURS each day, in rural parts of the United States (the other option is even more expensive single-room schools).  Often times, they rode in a gas-inefficient school bus (6-7 MPG is not unusual) with a handful of other students.  Yet, it was considered the responsibility of government to provide education for all students in the country, even ones that happened to live far away from school.  It was considered a responsibility, even though these students cost many times more (think bus purchase cost, driver pay/training/benefits/support, bus maintenance, gas, insurance) to educate than people who lived two blocks from the school.  But without bussing these students, there would be no school for them to go to - and they have a right to education, despite their parents living literally in the middle of nowhere (I also suspect the cost to bus one of these students per year was more than the cost of most communication devices).

In other areas, we also see the need for education, even when it costs money - such as schools that may have to teach the child of an immigrant, who may not yet know English.

That’s why we need to get this turned back to “It’s not about who pays, it’s about civil rights.”  When schools press that they could educate however many “normal” students for the cost of one “special” student, it’s time to ask, “So, what makes educating normal students more important?  It it only numbers?  If so, let’s stop educating in rural areas and bad neighborhoods.”  There is an underlying principle here: We have to educate students - ALL students, not just the inexpensive ones.

Yes, States, the Feds, schools, and local communities should pay for this, too - JUST LIKE THEY DO FOR INEXPENSIVE STUDENTS!  And we should lobby for this.  But when one of these communities tries to balk and say that the money shouldn’t come from their own pocket, it’s time to call them on that.  This isn’t something that each funding source can simply toss over the wall, nor is it something that they can say “We can sacrifice these students for the good of normal students.”

I know I can hear people saying “We just don’t have the money.”  Well, perhaps we would have that money if we would pick the X number of students that one special-ed kid’s education would pay for, and then NOT educate those X students.  They probably are important enough to fund - by every funding body.

(Added the following after posting): One more thing, it shouldn’t have taken a mandate, funded or otherwise, for schools to support the civil rights of all students.  I guess that’s my concern about the “unfunded mandate” argument, when applied to special education - they should have been doing it long before the mandate.

When it comes to suffering, or at least to those who suffer, autistics are hardly unique. There are two myths that commonly get attached to those who suffer:

1. If someone else isn’t actively indicating that they are suffering, their suffering isn’t “deep”.

2. If someone is actively indicating they are suffering, they are just “whining”.

I see both of these among autistics (and others who suffer) very frequently. Both have an interesting premise behind them: “Their suffering isn’t deep or real.” Note that this isn’t the conclusion, but the premise - these two statements would not make sense without accepting that premise.

The reality is that different people respond to suffering, pain, and other negative things differently. I’m not a “you create your own reality” type of person, so I’m not going to say this is because of poor or good self-image, positive/negative thinking, or anything like that - I believe these terms (and others like them) are used to abuse people who are already suffering, by making people think suffering is their own fault - when often it is not..

But people do respond differently to different situations. There are literally millions of reasons for this (it’s actually similar to sensory perception in a way - a sound I crave very well may be a sound that is painful to another, but it doesn’t change the nature of the sound, nor make it either person’s “choice” or “fault”). But someone who responds to suffering in a quiet way is simply responding in a quiet way. That doesn’t negate their suffering.

I do wish that I didn’t have to scream at the dentist, in what feels to me like a gross overreaction to pain. But I do. If I don’t, no other form of communication I’ve found seems to be appropriate as far as the dentist is concerned - I must not “really” be in pain if I’m not screaming. We shouldn’t have to play these games! We should have a right to having others take our suffering seriously without the need for “acting”.

Likewise, something someone thinks is minor might elicit a huge reaction from me - not one of “acting”, but a real, genuine, and obvious reaction. Rather than arguing about whether or not my reaction is “appropriate” or “overreaction”, why not try to help? Why not try to see what bothered me enough to make that reaction, before simply dismissing my reaction as inappropriate or too big?

I believe that understanding this is a key to interacting with autistic people. Just because I don’t show suffering in an “appropriate” way does not change the nature of my suffering. It is amazing the number of anctedotes about autistic people “overreacting” but later to be discovered to have incredible suffering, such as a broken bone, toothache, or other “legitimate” problem. Perhaps it would be wiser to just accept that when someone shows signs of suffering that something is wrong!

Likewise, I can’t judge the effect of something on someone else on the basis of my own reaction. Something that causes great pain or grief in me may be something that is trivial to someone else - and vise-versa. That doesn’t invalidate anyone’s pain, it simply means that we are different.

So, if you see someone suffering, just try to give them the benefit of the doubt that they just may have a reason for it - before you assume it is overreacting. And, likewise, don’t assume tht suffering isn’t there just because someone doesn’t respond in the “typical” manner.

I’ve not been writing much, due to moving and taking a new job - but I’m getting settled again now, so it was time for another blog.

I’ve observed the autistic community (like so many other communities) continually defining themselves by what they aren’t. Right now, the popular thing to be “not” is “biomed” - and you can see this online in blog postings and mailing lists populated with autistic people.

Before biomed, there was Applied Behavioral Analysis (ABA) to be “not”. You weren’t supporting autistic advocacy if you weren’t anti-ABA. Unfortunately, you didn’t even really have to know what ABA was, you just had to be against it.

Before that, others tried defining autistic rights (as distinct from autistic community) as “anti-refrigerator mothers theory” or anti-secretin.

You can trace the history of the autism advocacy movement - and the birth of entire organizations - by what they were fighting against at the time of their creation.

There’s a problem with this - it creates a single, overriding issue that is treated as a litmus test for orthodoxy, while ignoring other, equally-valid issues. Right now, if you are against “biomed”, you are “pro-autistic”, at least in the eyes of many.

Now, I share the views that Secretin is useless to “cure” autism, refrigerator mothers don’t cause autism, the things being sold as “biomed” for autism are harmful, and ABA is unethical. But, too often these things (and many others), become a single issue that we focus on at the exclusion of all other issues.

We need to remember there are issues other than the popular ones. We also need to remember that sometimes we have to be *for* something, not just against something, if we want people to change.

From a mailing list I’m on, ICAD, I’m forwarding the following to my blog so it gets attention:

Tens of thousands of Koreans are protesting the suspended sentences of four men convicted of repeatedly raping a young girl with intellectual disabilities. Protesters are calling for impeachment of the judge. The victim, now 16-year-old was repeatedly raped by her grandfather and three of her uncles over a period of many years from when she was a young child in a case police described as gruesome.

The Judge in this case suggested that suspended sentences were appropriate so that these men could continue to provide care for their victim.

It is important that international attention is focused on this case as the prosecutor attempts to appeal these sentences.

1. Please consider letting others know about this case. More info can be found at

http://icad.wordpress.com/2008/12/01/korean-outrage/

and

http://icad.wordpress.com/2008/12/03/thousands-protest-rapists-probation/

2. Please consider responding to the icad poll on sentencing in this case and asking anyone who cares about the abuse of people with disabilities to do the same by going to

Suspended Sentences Poll
http://icad.wordpress.com/

Thanks for considering this request.