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.

Some Insights from Autcom

I won’t write about all of the insights at Autcom that impacted me, but I will say that one part in particular Melanie Yergeau‘s presentation was creepy. Don’t misunderstand – Melanie gave a great presentation that was really insightful and interesting. She illustrated one of her points about how some uninformed outsiders “hack” autism by playing this video:

Of course any video that starts, “Autism Speaks wanted people to experience how this must truly feel for parents…”  Of course I could comment on the choice of an Asian child that looks unhappy as the example of autism by a group of almost-exclusively white upper middle class people viewing it – there are definite shades of racism and cultural bias. But even ignoring that, again, our parents are what is important. And apparently the problem isn’t that the girl seems unhappy, it’s that she doesn’t make eye contact. To make the parent feel good.

I didn’t actually think anything could lower my opinion of Autism Speaks as an organization. That was insight one: they are capable of new (to me) and surprising things.

You can look forward to me someday creating an autism simulation using a creepy white kid to stare you down no matter how you try to move out his creepy gaze.

Another insight was more personal, from Suzanne Oliver’s presentation. She’s a music therapist in the US who talked about the importance of rhythm in creating, stopping, or transitioning movement – and how some rhythms could enable an autistic person to move easier, while other rhythms might serve to trap a person in a sort of loop, and yet others might make it hard to move. She presented some research, which I wasn’t able to evaluate, so I’m not going to speak about the scientific basis of her theories – as I really don’t know one way or another about them.

What I will speak about is my personal experience, as an adult with autism. During her presentation, it “clicked” why I use my tablet-based AAC device so much less than my older keyboard-based devices. Certainly, being able to type at 100 WPM or faster makes me prefer keyboards, but there is more to that, and I think it’s applicable to other autistic people too. I set my tablet to provide a short vibration when I tap a key, but not to provide auditory feedback which I believed would disturb other people (probably true).

However, after listening to Suzanne’s presentation, I had an “Ah Ha!” moment. I learned to type on a real IBM keyboard – the kind you could hear three classrooms down the hall when the strong, real, “click” was heard.  Like this video:

This was when keyboards were keyboards.

I’ve never been able to type as fast on newer keyboards, but I never really thought much about why. But I think I know – for whatever reason, the clicks provide that feedback to get the next button pressed.

Sure enough, I tried it at Autcom – I turned on key clicks on my tablet, and sure enough I found not only could I type easier, but I could also think of my next word and thought easier. I could communicate better.

Is it placebo effect? Maybe. Is it something where the keypress rhythm is stimulating my mind in a better way? Maybe. I don’t know. All I know is that I was able to say what I was thinking again, using typing, in a way that I can’t as easily with speech. And I thought I had lost that when I converted to a tablet device. That’s pretty exciting. Being able to say what you think again is exciting! And I think Suzanne is onto something real.

It was also great to see some of my online Facebook friends and people whose writings I really admire.

So, overall it was a good time. Sure, there were moments that weren’t so good, but I won’t get into those right now. Right now, I’ll focus on how to build my creepy staring child simulator and how I might be able to actually use AAC again!

Chicken Sandwiches, Interracial Marriage, Autism Speaks, and Popularity Contests

It’s lunchtime, so, having some time, I thought it would be good to talk about, well, lunch.  This week, gay, lesbian, and bisexual people lost out in the USA.  Their fellow citizens showed that, given the choice between supporting equal rights and eating a chicken sandwich, the sandwich will win.  It was kind of a modern version of the Two Minutes Hate, just with chicken instead of a telescreen (and, as John Stewart says, in the clip below, finally a type of protest that Americans can manage – eating fast food).

But that’s not what is interesting – or even most depressing – to me.  Both sides of the gay marriage issue have taken sides, with the Human Rights Campaign and others now promoting a Starbucks Appreciation Day (Starbucks has publicly stated their support of same-sex marriage).  Essentially, people seem to have a need to show that more people support a their own view than support the other sides’ view(s).

Autistic people who have campaigned against Autism Speaks know the dangers of this.  I would guess that for every person who has spoken out or taken direct action against Autism Speaks, that there have been 1,000 people who have walked in one of the Autism Speaks “Autism Walks.”  The majority is uninformed and wrong when it comes to Autism Speaks.

This isn’t just an autistic issue, either, where a minority finds itself oppressed by a majority that supports causes counter to their own goals.  People referring to themselves as “Jerry’s Orphans” have spoken out about the Muscular Dystrophy Association’s annual telethon (featuring “Jerry’s Kids” – that is, children with muscular dystrophy that were used by the former telethon host, Jerry Lewis, to invoke feelings of pity and loss towards disabled people with muscular dystrophy).  Yet, the MDA’s telethon continues to get popular support, as does the MDA itself (I cringe every time I see firemen standing in the middle of the street holding out boots for me to donate to the MDA).  Popularity doesn’t make something right.

Nor is it even just a disability issue.  You may know that while interracial marriage became legal for the entire USA in 1967, thanks to a landmark Supreme Court case, Loving v. Virginia.  What you may not know is that, in 1968, one year after the legalization throughout the nation (it was legal most places other than the south before 1967, which makes this number more shocking), only 20% of the US population support interracial marriage (67% opposed).  Even as late as 1983, most people in the US opposed interracial marriage – 50% – while only 43% supported it.  In fact it wasn’t until 1997 that a majority of the population was willing to indicate they supported interracial marriage, according to Gallop polls (there were polls in 1994 where only 48% supported interracial marriage, and then again in 1997 where, finally, over 50% – 64% actually – supported it).  What is interesting is that the shift occurred fairly quickly, but if eating at certain restaurants was the key to getting people the right to marry, they would have lost for a long time.  Fortunately we have a good court system that was willing to undo some past prejudice, and not decide whether people have rights based on popularity.

Minorities – whether autistic, people with muscular dystrophy, or interracial couples – don’t get rights by popularity.  It’s decidedly unpopular to extend rights to anyone that doesn’t already have them.  It stays unpopular for years, even decades, after the rights are granted.  Eventually things change, but true courage involves standing up for those rights before your friends and family do so.  It’s not about standing in a Starbucks line with a bunch of like-minded folks, or keeping people from standing in a Chick Fil A line with a bunch of like-minded people.  It’s about doing what the people around you are not doing. We should be teaching people to do the right thing, even if others aren’t doing it with them.  It’s never popular to challenge the status quo.

I’m off to salvage what is left of my lunch hour!  And, no, I’m not in the mood for Chicken.