This is Autism

Everyone has definitions of autism. Professionals define it, advocacy organizations define it (too often in a way that excludes self-advocates), schools and government define it. And these definitions always miss some really, really important elements – they miss the sensory distinctions. They miss how we process emotions and empathy (or they say we don’t have emotions or empathy). And they miss our culture.

Yes, our culture. And our “alive.”

You want to know what autism is?

It is when I visited another autistic and we both sat on the floor across from each other, typing, flapping, gesturing, and pointing. It was when this other autistic brought some stim toys and blankets, threw the blankets over me and gestured at the toys, knowing after a long trip I probably needed some rest. That’s something most neurotypicals can’t pick up on, but another autistic knew immediately.

It was on another trip, with a different autistic, when I was also on the floor, not communicating with words at all, but still seeing, still listening – and having food just appear in front of me, people knowing that’s what I needed right then.

It’s finding others that think like you do. Not just intellectually, but on that more human, basic level. People who carry no expectation (unless they’ve been taught!) that I need to “look them in the eye.” People who understand why I’m stressed out in a certain environment, why I’m calm under my blankets, why I might not be taking care of my own needs (like eating). Mind you, these other people are other autistics, often who have their own difficulties with similar things – but somehow, when able, they are more then willing to help.

Now this is one type of autism – there are many others. Oh, no, not like you might think of high and low functioning or other bogusness. No, there are autistics I can’t relate to, but for different reasons. You see, one thing people would learn from us is that there are different kinds of autistic people, but not different in the sense of IQ, communication, or any of the things that non-autistic people seem to often notice. No, differences at a much more basic level – maybe that autistic IT professional and the non-speaking autistic with full-time support are closer to each other than two autistic IT professionals are!

I’ve seen autistics open their homes, their wallets, their kitchens, and their hearts for me. These are not the actions of people without empathy or human connection. I’ve traveled the world – literally – and met autistics in other countries. We desire a connection.

This isn’t to say life isn’t challenging for anyone. But, it’s life. Life can be beautiful one day and hell the next. For anyone. Anyone can lose a loved one. Anyone can be hurt or abused. Anyone can fail to achieve a goal. But autism isn’t just failure and pain, anymore than humanity is failure and pain. There’s also the joys, including the joy of connection.

The most significant day in my life was the day I married my – autistic – wife. Two autistics in one house. Sometimes I help her, sometimes she helps me. Sometimes we both somehow get through the day having difficulty together, but at least with someone to share it with. She knows me in ways that only someone who has lived as I have, and thinks as I do, could know. It’s beautiful and wonderful and love. I’ll say this: I’m living. Not just existing. But living. Autism is alive. Autism is love. This is autism.

Why I’m Proud of my Community (including our allies!)

This week has been good and bad.

A major autism organization started this off by posting a really horrible essay (the comments are actually good on this one, though – another thing that makes me proud of my community) about their policy summit. Besides for other horrible stuff in the essay (we’ll get to that), the actual summit will apparently consist of a bunch of people chosen by Autism Speaks to tell government “what autism says.” One group is absent though: autistic people. Our voice isn’t important to the group that claims to tell people what autism says.

Immediately, several autistic-run organizations sprang into action. I was thrilled to see an organization I’m part of, Association for Autistic Community, quickly decide, YES, this is something we need to speak out about. We joined with ASAN, an autistic-run group that is extremely effective in advocating for the well-being of autistic people, in issuing a joint statement about what Autism Speaks has done.  But we weren’t the only ones to make a statement: Autism Women’s Network made a statement of their own.

Then, we saw a powerful advocate organize a protest of the Summit. From all accounts, it was a successful protest.

See that? In the span of about 48 hours, we’ve (autistic people, that is) issued formal statements and organized a successful protest against an event. But, uh, sure, we’re not qualified to sit at the table for discussions about what to do about the problem of our existence put on by an organization claiming to understand something intrinsic to our being.

I’m proud that our community did this.

But that’s not all we did. Many, many autistic bloggers wrote about the event. Here’s just a few:

Of course some of us did a bit more digging. Lydia discovered that Judge Rotenberg Center was one of the featured exhibitors at the Washington DC Autism Speaks Autism Walk (edit: I thought it was an upcoming walk, but it was a past walk). Lest you don’t know about JRC, you can watch the below horrific video used in a trial against them:

Again, this video is very disturbing, only click if you can handle that. In the video, a kid is shocked for refusing to remove his coat.

Ironically, Autism Speaks previously issued a statement against the use of shock by JRC. Now, they featured them as a resource to parents at their most well-known event, their autism walk. Disturbing indeed. For what it’s worth, the trial ended in a settlement. I’m proud our community stands up to this and continues to fight – and publicized the support given by Autism Speaks to the only school in the USA to use electric shock to discipline students (and, yes, other students get students that had problems in other programs, a common refrain used by people to justify awful behavior).

This morning, another surprise event – John Elder Robison, one of the only (if not the only) autistic voices on an Autism Speaks advisory panel, resigned. He wasn’t the only one. A mom, invited by Autism Speaks, who personally knew Suzanne Wright (one of the founders), spoke out about the hate as well in one of the most powerful pieces written this week.

But this wasn’t all – our other allies have been here too. Parents are fed up with being told that their kid is a horrible, diseased, terrible, a drain on society, and destroying their families. And they’ve shown themselves to be the allies we (and their children need) – and very much in disagreement that they aren’t “living” but merely existing (as, apparently, a family with an autistic family member exists, and doesn’t live, according to Autism Speaks). They’ve all written brilliant texts that show their main worry about Autism Speaks isn’t political gain, but rather the well-being of their child. Autism Speaks hurts their children.

 

(edit: I also came across this after I made the initial post) And then there’s people like Spaz Girl who aren’t parents of autistic or autistics but might be classified as “just an ally” (there is no such thing as “just an ally” – you all are very important). She wrote This is the Week that Autism Speaks Meets its Downfall.

(edit: added to the original post) Special education professionals also are speaking up! Tim wrote, “The Best Argument Against Autism Speaks: A Special Educator’s Perspective.”

(edit: also after I made the initial post) Even the Autism Society of America (historically hostile to autistic people, but this organization has seen tremendous change in the last few years) has made a statement.

I am proud of my community. I’m proud of these allies. I’m proud that there are people in my community who get it. Who understand that slick advertising isn’t enough, that there actually has to be some substance behind saying you care about autistic people.

I’m so damn proud. We don’t need Autism Speaks to speak for us. Thank God.

The Cost of People

Autism Speaks has said we cost society over $2.3 million over our lifetime.  From their recent event about us and without us:

Financially, we estimate it costs 2.3 million dollars to care for one person with autism for their lifetime, and it will be well over $137 billion dollars for all our children.

Actually, Suzanne Wright, one of the founders of Autism Speaks, misquoted her own orgnization’s research, that said:

This research found that intellectual disability plays a major role in the cost of autism to individuals, families, and society as a whole. The costs of autism per year are nearly twice as high on average for children and adults with intellectual disability than for children and adults without intellectual disability, $2.3 million in the U.S. and £1.5 million in the U.K. ($2.4 million) for those individuals who are impacted by intellectual disability compared with more than $1.4 million in the U.S. and £917,000 ($1.46 million) in the U.K. for those who do not have intellectual disability.

They further claim that 45% of individuals with ASD (Autism Spectrum Disorders) have intellectual disabilities.  There’s a lot of reasons why this 45% number is inaccurate, but it doesn’t matter to this discussion.  Let’s just assume that Suzanne did new research that found our cost of autism was $2.3 million over our lifetime.

Usdollar100-mediumTheir research hasn’t yet been officially published as far as I can tell, and, thus, not peer reviewed.  So I don’t know the factors that went into deciding what a “cost” is.

For instance, my family has a mortgage payment. Is that a cost? Is it a cost if it is paid for out of Social Security? Is it a cost if it is paid out of employment? What if I rented? If I was in a group home, is that a cost? Is it really a cost to society if someone is being paid with this money, who then uses that money to pay for things like their house?

So let’s look at neurotypicals, while we figure out cost. I would say that US residents cost more than Chinese residents. And I can prove it.

China sets their national poverty line at 2300 RMB per person.  That’s $377 per year, according to Google. I imagine it’s pretty darn tough to live on $377 per year or less per person (somehow 150,000,000 Chinese are making this) but the World Bank says that this is the minimum necessary to live to their standards on, so I’ll take their word for it.

In contrast, the USA’s poverty level, set by the USA government is $23,050 for a family of four, or $5,762 per person (note that different family sizes have different poverty levels).

Now, one could take these apples-and-oranges numbers and say, “Wow, poor Americans cost society 15x more than poor Chinese!” (if you looked at rich Americans and rich Chinese, the numbers would be much more dramatic).

Or you could say this is a bogus comparison. Costs, standards of living, and measurement of poverty differ between the two nations. You can’t compare things that way. But you also can’t say that the American who owns a beat up car (a luxury most Chinese don’t own) is necessarily wasteful – maybe he is, maybe he isn’t (and certainly not all Americans own cars), but regardless he probably doesn’t see his way of getting to work as waste.

Now, I’m not saying China is doing well – obviously when you have 150 million people living on less than $377 a year, there’s a major problem there, and something the rest of the world should care about (although, generally, we don’t).

So, does that American cost world society more than that Chinese? Is this even a valid question to ask?

200px-Carbon_dioxide.svg

Lewis Structure of carbon dioxide, from Wikimedia (Public Domain)

We can try looking at another measure, CO2 emissions. These emissions cost the entire world, not just the country they are created in. Everyone int he world pays for these emissions. So let’s look at China and the USA, the #1 and #2 CO2 emitting countries in the world.

China emits 6.2 tonnes of CO2 per person, according to Wiki in 2009.

The USA emits 17.2 tonnes per person.

So, here, the USA hurts the world about 3 times more than China does, on a per-person basis (of course China has more than 3 times the people so as a country they create more CO2, but they create less CO2 per person).

For what it’s worth, Qatar leads the world in per-capita CO2 emissions at 44.0 tonnes per person, about 2.5x what the US and 7x what China does.

So, is the American not costing the world, while the Qatar citizen is costing the world immensely?

Regardless, how much CO2 cost does the average autistic have?  How does that compare to the successful business executive?  Who really costs more?

What people really mean when they say someone costs society is that someone gets the money that provides for their living through a method that isn’t considered noble or acceptable. It’s noble to be a rich guy who made millions out of selling bogus securities on bad mortgages. Or the guy that knows that a good deal of the people receiving student loans don’t have a chance in hell of actually being able to pay them back, but knows that he can rely on insurance and the government to bail him out. He’s not costing society, even though that student will not be able to purchase a house or start a family because of the crushing loan.

Often people think there is a cost if someone isn’t working. There are 5.1 million stay-at-home mothers in the USA.  That’s 1.7x the number of autistics, according to Autism Speaks! Are they a drain on society? After all, they aren’t working. Yet I never see articles talking about the cost of stay at-home-moms (for good reason).

189px-Lindsey_Graham,_Official_Portrait_2006

Senator Lindsey Graham

Or we can look at people who receive income and services from the government.  In 2011, the average Congressional salary was $174,000 per year.  So, assuming Lindsey Graham made average salary, his 20+ years of congressional service cost us $3,480,000 – not other benefits, which are substantial.  Regardless, it costs us more to have Lindsey Graham in office for just a small portion of Lindsey’s life (20 years is just 27% of a 75 year old estimated lifespan) than it costs for a lifetime of support for an autistic with an intellectual disability, according to Autism Speaks. Assuming a 75 year lifespan, the autistic that “costs” 2.3 million USD will cost, on average, $31,000 per year.  That’s substantially less than the $174,000 we pay the average congressman – 5.6x more than the autistic with intellectual disabilities.

What’s interesting to me is that people allow this type of rhetoric at all. It’s absurd to try to figure out if a Congressman or an autistic person “costs” more. Particularly when cost is a value-laden term – does it cost more if I receive social security and take the bus or if I work and drive a gas guzzling car? If I’m Chinese or American? Do I cost less to society if I create a financial system full of bad loans or if I receive food stamps?

It’s bullshit. The existence of people doesn’t cost society anymore than the need to eat does. You can’t have a society without food. Or people.

 

 

What is the Problem with the Autism Speaks Summit – A Parent’s Words

Sometimes we autistic people get a lot of criticism when we comment about Autism Speaks. We’re told, “But you’re not a parent, you don’t understand.” And sometimes that criticism is valid – although not nearly as often as the criticism is made (for one, it ignores the people who are both autistic and parents of an autistic). But regardless, most of us do value parent allies who advocate for their children strongly while listening to our point of view.

So, it’s always refreshing when someone speaks clearly from the parent perspective about what is wrong with Autism Speaks’ summit – this time, criticizing the press release and rhetoric (not the only problem with the organization or event by any means, but a very valid criticism).

At “A Diary of a Mom,” the writer writes:

Because demonizing autism dehumanizes my child. Period. Because while shock and awe might raise money, they compromise my child’s safety, they tear away at her dignity, they separate her from the rest of us. “And what of older children and adults?” I asked Mark at the time. At six, I knew that my daughter wouldn’t see that video, but what about those who were old enough to watch it? What about Autistic teens who were so damned vulnerable — to bullying, to depression, to suicide. What about them? Did anyone think of what it would feel like to hear that if you haven’t already, you will destroy your parents’ marriage, bankrupt your family, make it impossible for your parents and siblings to do anything at all without pain and embarrassment? How would it feel to an already-struggling kid to hear that THEY are the cause of desperation, loneliness and fear?

Powerful. It’s even more powerful coming from someone who was part of Autism Speaks.

So go read it yourself.

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.