This is Autism Speaks

This week is another week that America will be subjected to claims of our inhumanity and blamed for social problems.

This is Autism Speaks.  You can read about their latest press release, another event where they don’t bother to actually value the voice of autistics.  Now, what I write below is a parody of the horrible announcement they posted on their site. And, yes, I know there are wonderful parents out there (I shouldn’t have to say that – it’s an indication of the lack of power we have when we do have to say that, despite never saying that there aren’t good parents – people somehow assume bad motives and intentions, not good ones).

So, what is my problem? I’ll try to explain it this way:

We’re told that we’re three million that are missing.  Apparently Autism Speaks is looking for us (maybe they should try listening, we’ve been screaming).

We’re told we’re gravely ill. No, our stomach is sick, but that’s because of the rhetoric. Many of us are quite well.

We’re told that we need the Army, Navy, Marines, and Air Force to find us. We’re told we  need the National Guard to find us.

We’re told they will keep looking for us.

Yet for the most part the group making these claims has lost touch with three million American children, even as they beg for more money from the nation.  Yet we speak. Why won’t they listen? We’d be easier to find if they used their ears.

We’re told that we cause families to split up, go broke, and struggle. Never to bond, love, or share. We’re just the bad.

No more.  This week in Washington, D.C. we will gather an unprecedented number of autistics, allies and real experts in every area of autism to protest their three-day summit.  We will demand a national response. Or even just an acknowledgement that we – the people they claim to want to help – exist and have a voice.

Don’t we deserve it? America has always been about equality and representation. Even when we lose our way, we eventually discover it again.

Yet, they seem to have forgotten their children – and these children are part of our future. And us autistic adults are part of our today.

Each day across this country, those three million moms, dads and other care-takers I mentioned can make a choice.  That is – if they aren’t seduced by the fear mongering of Autism Speak’s rhetoric about lost and sick child. Truth be told, many of them aren’t, at least according to Autism Speaks, supposed to enjoy their children—or when they do – they are supposed to be fixing their kids—never just sharing time. They should be wondering what they will try next. Will they try new drugs? A new social skills program? A special school? A new doctor?  Sometimes – silence would be better than supposed advocacy.

These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7.

This is Autism Speaks.

Life is lived moment-to-moment.  In joyful anticipation of their child’s next move.  But they’ve been told to live in despair.  In fear of the future and the today.

This is Autism Speaks.

On the good days my family and all the others out there – millions around the world – see the sun shine and their family’s smiles. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally.  Physically.  And especially emotionally.

Maybe they have been up all stressed out about lack of services to help them live with dignity, without being told they are broken or defective. Maybe they are up yet again crying, just wanting someone to see them for who they are. To listen.

Maybe their parent has been trying to drug them.

Maybe their parent has said they want to drive them off a bridge, to kill them.

Maybe there is a waiting-list for supportive housing, for personal aides.

Maybe their parents won’t let go.

Maybe they don’t have the money to pay a special lawyer to fight for the services they need to survive, because we’re too busy funding things that won’t help.

This is Autism Speaks.

If any of this sounds familiar, you know Autism Speaks.  And if you know Autism Speaks, you know we are looking at a monumental failure in advocacy. And, we have no voice in it.

What I described above is really just the beginning.  In the next years, Autism Speaks will likely continue down this path. Ignoring the voice of autistics.

And, what about us autistics? How much can we hateful and ignorant rhetoric can we stand? How long can we fight against people telling us that our voices don’t matter because they know someone who is “nice” and part of Autism Speaks? How long will it be before the exhaustion makes us ill?  How long before we break?

And, we they do – who stands against the hate?

There is no national will to stand against this. It’s nicer to think that Autism Speaks is just good, but misunderstand people.

So let’s dial back a minute and consider the many times Autistics have reached out. Do we have real autistic representation on Autism Speak’s board? Are we even one of many voices at the table discussing what should be done to people like us? Are we anywhere close to hearing a guarantee we will get a fair shot to be heard?

We know autistics from minority and lower income families are even less listened than other autistics, so they lack even more representation – look at Autism Speaks’ board and count the number of minority and low income board members.

How about in advocacy?  Is there a desire to include us at all? Are we listening to autistics tell you about what does and doesn’t work? Is there collaboration?

But – there is no attempt at collaboration.

Yet – our future depends on it.

Financially, we are blamed for costing 2.3 million dollars to care for during our lifetime, and it will be well over $137 billion dollars for all of us. No mention is made to our contributions, only our costs. Yet Bob and Suzanne Wright, the founders of Autism Speaks, made plenty of money from the government – much more than 2.3 million dollars Bob worked as an executive to GE, which recently cost plenty to the tax payer – and has for many years.  Maybe it was worth it, as I’m sure many of the contracts delivered value to us – our money was invested and spent well. Others, not so well. But any dollar spent for us is seen as waste. Never mind where these numbers come from – I dare you to find the autistic adult who will receive 2.3 million dollars of services.

But money aside, these are our lives.  We have a lot to say about our lives.

What is our message?

We can’t even craft one – without even one seat at the table.

Close your eyes and think about an America where three million Americans and counting largely cannot influence the decisions of government and support agencies about how they are tried. Imagine three million of our own – unable to even get a seat at the table to talk about the things we need so we can eat, so we can bathe, so we have a roof over our heads, so we can pursue our love lives, so we can live.

This is a national emergency. We need to be heard – NOW.

We are heading to Washington with a call for action and a call to be heard – NOW. We are asking Autism Speaks to respond to autistics with the urgency we deserve – NOW.

Autism Speaks – here we come – because we need to be heard – NOW.

What I Think about Autistic Criminals

In the news today was a story about a man who allegedly used malware to take over his victim’s computers and take pictures of them (particularly undressing in front of the computer, not knowing they were being watched), which he then used to blackmail his victims into providing more pictures or video.

As one can almost expect in this type of case, the man’s family has apologized and added that the man, Jared James Abrahams, was autistic.

Now, I’m autistic. I’m also a man. And I, too, know how to use computers. But that’s where the similarity ends. And I have no sympathy for Jared, if he did what he is alleged to have done (and, according to police, admitted to).

Autism doesn’t prevent us from knowing right from wrong. In fact, many autistic people have a very strong sense of right and wrong.

And, contrary to popular opinion, we can manipulate, lie, cheat, violate, and intimidate people. As Jared did. And as do many other people, both autistic and non-autistic alike.

Now, assuming Jared did this (he does have a right to a trial and innocent people have confessed before – albeit I see that as highly unlikely to be happening in this case), the problem I have is the attempt to use this diagnosis as an excuse. Autism should not mitigate sentencing or prosecution in the type of case Jared is involved in. He knew this was wrong. And he did it anyhow. Laws were written for people like him.

I also have fairly little respect for someone using computers for this purpose. It’s not “being good at computers.” Being good at computers is going and fixing the Linux IP packet scheduler so I don’t have 2 seconds of queuing on my wireless interface. If you want to impress me, go do that. But that’s a whole different kind of “good at computers” than downloading some easy-to-use hacker program and tricking your victims into installing it so you can take nudie pictures of them (hint: there are plenty of nude pictures on the internet that you don’t need to hack anything to see). If people want you to stay out of somewhere, then stay out. And, for creepy guys who violate privacy, you probably need to stay out of women’s bedrooms. This wasn’t an intellectual crime – this was a crime not very far removed from that of a rapist. There’s plenty of things of intellectual interest in computing that don’t involve violating people’s privacy or bodies.

But I do think there are areas where autistic people do deserve special treatment: we don’t win in interrogations. It’s really important that an autistic person in particular have easy and early access to legal defense. It’s easy to manipulate someone who doesn’t follow all the normal social cues. That’s why we have lawyers – to protect our rights. Even if we are guilty or a creep.

Now, I have no idea if James had access to a lawyer or not, or if he was coerced in anyway to confessing. I’ve read the complaint and it is pretty convincing (albeit I’d challenge some of the technical points, but the complaint would still stand), and it seems as even without the confession there is plenty of evidence. But I do think this – and the reporting of being a victim – are two areas where autistic people lose. The system is not designed for us.

But, if the facts show he is guilty: sentence him as you would sentence anyone else. I would say that I suspect general population prison to be inappropriate for most autistic people. But I do think we can earn prison time – but in prison, it’s important to recognize that we are vulnerable, and that prison does have a responsibility to provide safety even for creeps and criminals.

I do wish that we wouldn’t hear “he’s autistic” as often as we do when people are brought to trial. Autism doesn’t make criminals. And in fact, we’re way more likely to be victims (and that part of the justice system treats us poorly too) than most people, while we’re less likely to be criminals statistically (but, obviously, there are exceptions).  Too much popular discourse surrounding crime involves demonizing the mentally ill (of whom, autistics are popularly considered to be a part, whether or not they are also mentally ill).

I also don’t like to hear the response of some of my autistic peers: “He’s not autistic.” I don’t know if he is or isn’t, or if any given criminal is or isn’t. But I do know we can be criminal, we can manipulate, and we can do bad, bad things.

So, am I surprised that autistic criminals exist? Of course not. And I hope we see justice served in this case, whatever outcome that requires.

Nothing About Us Without Our Parents

There are three classes of people when it comes to autism – autistic people themselves, parents and caregivers of autistic people, and “normal” people.

Of course the “normal” people typically get to dictate how things work – after all, they beat out the other two groups by sheer numbers.  Just read a letter that was sent to a parent of an autistic kid.  It starts by saying:

I also live in this neighborhood and have a problem!!! You have a kid that is mentally handicapped and you consciously decided that it would be a good idea to live in close proximity to a neighborhood like this????

The grandmother’s crime (the autistic boy was with his grandmother) was living in a neighborhood and allowing her grandson to visit.  The letter was signed by “One pissed off mother!!!!!”

Now, we all know that most people aren’t the assholes that this “one pissed off mother” is, and we can even see that in the reporting of the community response to the incident. But just because most people are decent doesn’t undo the damage from the assholes. Every time a mother or father of a kid who makes strange noises, does things strangely, has meltdowns, or just somehow otherwise acts different goes out in public with their kid, this mother or father has to fear how people will react.  They have to ask, “Will I meet an asshole today?”

Heck, even a local police chief may be the asshole, should your kid cry in a restaurant.

Often, parents and caregivers get dirty looks when they go out in public with their kids. Others say, sometimes subtlety, sometimes not-at-all-subtlety, “You’re a bad parent.”  After all, a good parent would have normal kids.  Kids who don’t do things differently, don’t make noises, don’t have meltdowns.  It’s, in a sense, an extension of the refrigerator mother theory of autism – autism is the fault of the parents.  If the parents were good parents, supposedly their kid would be more normal – that’s the persistent message to parents of autistic kids.

So, it’s not surprising that some parents have latched onto nearly every possible theory to explain autism, at least theories that don’t blame them in any part (even passing on genes is seen by some as blaming the parents). The origins of the Autism Society of America are based in this – find the true causes of autism and stop vilifying parents! In a sense, much of the advocacy work was advocacy work on behalf of not the child, but simply that the parent wouldn’t be blamed for the child’s behavior.

Certainly, that work is important, and, too often, it is ignored by autistic self-advocates today. Your parent shouldn’t be blamed for your autism! And, largely thanks to parent advocates, they generally aren’t (although their work clearly isn’t done yet – assholes persist).

But, the voices of parent’s aren’t the voices of the people most impacted by autism. Those voices (and other communication) are those of autistic people. We weren’t even included in the membership or leadership of the early autism organizations (and we lack this in many of the current ones). No, parents spoke for us.  Parents might have been treated like crap by society, but they still had more status than we had. If parents were the second class, we were the third class.

Even today, the idea that we should be the key stakeholders in policy decisions about autism is well beyond simply being controversial. It’s unheard of.  While the disabled community has the mantra, “Nothing about us without us,” the implementation of this mantra is typically, “Nothing about us without our parents.”

We see the impact of this even today. When a parent attempted to kill her autistic daughter recently, the press and public expressed sympathy.  Oh, not sympathy for the victim. No, sympathy for the mother. It’s a lot easier for most adults to put themselves in the shoes of the mother than the autistic child. Paula C Durbin-Westby talks about this in her blog.

Even when murder isn’t involved, it affects us every day. Just as the parent has to worry about the asshole, so does the actual autistic person. Most of us have had horrible childhoods. We know how autistic kids are treated. And it’s even worse than how parents of autistics are treated.

But it doesn’t stop when the child leaves the home (and, yes, the vast majority of autistic people do leave the home). If you think a parent gets a dirty look when a child has a overload in the grocery store, try being an autistic adult having a overload in public. We get the blame. Fully and completely. We may end up arrested or otherwise have freedoms removed from us. We’ll probably be asked to not come back to that area. We’re simply not wanted. At all. People can sometimes understand a kid doing this, but they don’t understand an adult that can’t cope with too much input or stress.

And just try – as an adult with autism – to suggest that autistic people should define laws and rules regarding autistic people. No, we can’t do that. We’re just one of the stake holders – and an optional one like that. We’re used when it’s convenient to someone else’s message. But our voice is not all that important without someone else saying it is. After all, we’re just the people affected by these things, we’re not parents or caregivers (never mind that some of us also are parents or caregivers of autistic people too!).

So while I don’t support the second class treatment that parents of autistic people get, and will do everything I can to support parents in ridding the world of that prejudice, it can’t stop there. I’d like autistic people to at least one day get second class status, not the third class status we have today. I’d like one day for us to get treated just as badly – but not worse – than parents of autistic people.

Even better, I’d like all of us to be treated decently. Parents shouldn’t be scared to go out in public with their child. And autistic adults should have a key say in how autistic people are treated (and, lest I leave out a disclaimer, I’m not saying parents shouldn’t have any say, particularly when it comes to being a voice for their child). We shouldn’t just be an optional voice or an after thought. We should be at the table when you’re first thinking of discussing these things.

Equally, I’d like to see a place where our murderers don’t get more sympathy than we, ourselves, do. But maybe that’s still too much to ask. So I’ll settle for second-class status right now.

The ADA, Obamacare, Health Insurance, and Job Killing

You know what the biggest threat to America is right now? The one thing that could push us into massive unemployment?

Apparently it’s healthy people.

20 years ago, it was disabled people. If you made every business build (with a corporate welfare subsidy in the form of tax breaks and tax credits) ramps and such for “those people”, then suddenly you’re going to close down every business. Yep, that happened.

Okay, no it didn’t. Now it’s a lot more common (but not common enough) to see disabled people work.

The next step for disabled people is universal coverage. Obamacare ain’t that. But it’s closer than we’ll be without it. A huge reason a lot of disabled people stay away from work is that they have complex health care needs – and most first jobs don’t provide insurance. I know there are all sorts of programs that, if you do them perfectly, will solve this, but at the end of the day people want assurance that their medical needs can be taken care of. Life is valued more than work. Go figure.

Of course most of the people who want to see Obamacare go down in flames aren’t dealing with that. They’re worried about “rationing” (in otherwords, if we treat the medical needs of everyone, then the better-off among us won’t get medical care, supposedly – of course there is no evidence that’s true, and usually the people talking rationing aren’t looking at whether or not everyone is getting care today; hint: we ration today, just on the basis of money). And they are worried about the possibility they might have to buy one birth control pill (because we apparently want abortion instead of pregnancy prevention so we can rant that we’re pro-life and any woman who has had sex but doesn’t want a kid is a slut who deserves punishment). And we’re worried about non-existant death panels.

Then they’re worried about job loss. People are going to have to lay off workers, they say.

Let me tell you something about most businesses: they don’t keep extra workers around for the hell of it. Most don’t run or operate as charities. They have exactly the number of workers they need to fill the demand for the product (or less). But they don’t have more. If they do, you know what they do? They do lay offs. Even successful businesses don’t provide guaranteed employment for life, if a position is no longer needed. And if that person is making the business more money than the business would make without them, they stay employed. After all, if you don’t have extra employees, getting rid of an employee means two things: overtime (which is typically even more expensive then the employee you got rid of) or not selling as much stuff as you would otherwise sell. And most businesses like selling stuff.

When a business owner talks about how his business is “already struggling” and that Obamacare will force layoffs by pushing him over the edge, ask why he hasn’t addressed the struggling business. Ask if he’s rehiring for positions after people leave. If he is, he doesn’t have more employees than he thinks he needs (you wouldn’t pay out money you don’t have to if you are struggling). But if he has plenty of employees to lay off on day one of an employer mandate, he’s badly managing a business and putting everyone’s jobs on the line with his poor management. This is particularly true if he’s not actively trying to shrink his current workforce – which can be seen by figuring out if he’s hiring new employees to replace ones that left.

If he is making money, then this is whining about not being able to pay as much of a less than livable wage anymore – he’s going to have to get closer to the point where his employees can afford to live.

But the simple fact is that employers don’t have extra employees. Maybe after Obamacare’s employer mandate goes into effect, we’ll see some employers lay people off. But I’ll give you a hint: that would have happened anyway, as they were not needed in the eyes of the leadership. It’s bad resource planning, by leadership – they purchased more manpower than they could afford or need. And Obamacare gives them a convenient excuse to use rather than just plain greed. Don’t let a bad manager get away with blaming Obama rather than taking responsibility.

Brockovich Syndrome

A recent Wall Street Journal article describes what happened as a result of Wakefield’s lies. In the name of “keeping kids safe”, parents are avoiding vaccines that are known to be both safe and effective, and which, ironically, really do keep kids safe.

I call it Brochovich Syndrome. Erin Brockovich, a non-scientist, single mother, uncovered a health disaster caused by the local utility near her small California town – the utility was poisoning the water and then lying about it.

This has caused countless others to search for the causes of things like autism. Many non-scientist parents blame vaccines for causing their child’s autism, either through the preservative (which contains mercury atoms) or the MMR for being too much for the child’s body at once. Some even combine these theories. A man named Andrew Wakefield, who had a serious, undisclosed conflict of interest proposed the MMR theory.

A diagram of a Thiomersal molocule.  See the gray thing?  That's where the Mercury atom is.

A diagram of a Thiomersal molocule. See the gray thing? That’s where the Mercury atom is.

Of course smart people – with actual medical training – came up with the idea to use preservatives in vaccines to prevent bacterial and fungal contamination of the vaccine. In essence, it’s not too different than asking medical professionals to decontaminate wounds with agents that kill bacteria – these infections can be deadly. Obviously, injecting live infectious bacterial or fungi into a body is a bad thing. So they added thiomersal (alternative name/spelling: thimerosal). They needed something that would kill fungi and bacteria, to keep vaccines safe. So they used this chemical to do it. Thiomersal technically includes mercury, although saying that is rather like saying “Water contains explosive hydrogen” because water has two hydrogen atoms and one oxygen atom. Thiomersal consists of, yes, mercury atoms, and also sulfer, sodium, hydrogen, and carbon. And while it is a toxic substance (so are lots of drugs we use – the key is dosage – when you want to kill disease, you use things that…well, kill – for instance, oxygen is toxic). So, a tiny amount of thiomersal is used, which has been determined to not be harmful to humans (even infants) in the concentration used, to avoid infection, which has been determined to be deadly to humans (even infants).

What happens when something like thiomersal is not used? Simple – people die. Of course if you think autism is worse than death…well, maybe it’s worth it for the discredited hogwash that generated mercury-in-vaccine hype.

Then there is the MMR which doesn’t contain thiomersal (it works on a different principle and thiomersal would destroy the vaccine). The theories are that the three elements of the MMR overwhelm the body’s defense mechanism, causing autism, and that these should be given individually instead of combined. Of course they are given combined because all three elements – measles, mumps, and rubella – can be dangerous or deadly. Ironically, rubella is one of the few known causes of autism – when the mother has rubella in pregnancy, birth defects are a too-common result. And you get rubella by not getting vaccinated (note that there is no link in children getting rubella and autism). So the very act of people not getting the MMR (uh, to supposedly avoid being given autism) is likely to increase the prevalence of autism! But the idea with giving all three at once is that it is much easier to accomplish. Instead of a child needing to see a medical facility three times, and have proper records and such, it’s one visit. One visit is easier than three, particularly once the diseases are mostly under control (and thus not seen as a reason for rushing to the doctor to prevent). Plus, most people’s experience with the mumps or measles is that “you get over it.” Often, you do. But it still can have lifelong effects. For instance, the mumps, while not causing autism, can cause deafness, impotence, miscarriage, meningitis, encephalitis, and even death in some cases. And while these things are rare, they are more common than it causing autism! But even so, the call for separate vaccines persists – despite it meaning less people will get the vaccines, and it being bad medical science to cater to people who hold irrational fears of medicine.

But, when the medical professionals shouted about “MMR DOESN’T CAUSE AUTISM” AND “THIOMERSAL DOESN’T CAUSE AUTISM,” people saw it as a cover-up. It was the medical community protecting themselves. And then came people with Brockovich Syndrome – they “discovered” the connection between giving their child a vaccine and the child “developing” autism, usually with a dramatic fever at some point shortly after the vaccine. Medical science says autism is clearly not related to vaccines. But that’s not enough to cause someone to think that it doesn’t, if they think they’ve made the connection.

Oh, on Erin Brockovich and her findings of contaminated water causing the unusually high prevalence in Cancer? Some skepticism may be warranted.