The Ugly Side of Autism Speaks, Part 2 - What We Can Do About It

NOTE: The following does not represent the views of Kind Tree-Autism Rocks. Kind Tree takes no official position on the actions of other autism-related charities.
 

Last time, I wrote about Autism Speaks and the damage they have done to the autism community. You can read it here. This time, I would like to address what we can do about it. Fortunately, much of what can be done to combat Autism Speaks is also useful to spread autism acceptance.

One of the most obvious things to do is to contact Autism Speaks to tell them directly how they have failed to adequately serve the autism community. We must remember when we do this that this is an organization that has repeatedly shown a resistance to the desires of the community. All statements directed to them should be displayed publicly. One idea that has been employed is open letters. This has the dual purpose of telling the general public of Autism Speaks' actions, as well as demonstrating that they have been informed.

A related tactic is to organize protests of Autism Speaks events, such as charity walks. As long as they are kept completely nonviolent, they can send a powerful message to the participants of the event. I even remember an occasion where an elected official was witnessed removing his Autism Speaks lapel pin in response to a protest by autistic self-advocates.

There are also many of us that choose not to spend money at businesses that donate to Autism Speaks. In addition, it may be of some help to contact those businesses to explain why you will not patronize them. You can find a full list of Autism Speaks donors here. More information can be found at www.boycottautismspeaks.com

Unfortunately, the direct approach is limited in its effect. It can be difficult to rally people behind you when the entirety of your message is in opposition to one organization. Even if it is successful, even if Autism Speaks were to disappear tomorrow, what happens next? What will prevent another organization from taking its place? One that is just as bad, or worse?

It is vitally important to create a positive counter message. One that can stand on its own, should there be nothing to oppose it. I would like to briefly profile two organizations here that do exactly that: the Autistic Self-Advocacy Network (ASAN) and Kind Tree-Autism Rocks. These two organizations take opposite, yet equally important approaches to this.

ASAN is a nationally active political action group that is headed and operated by autistic people. They work to empower autistic people to live full and happy lives, as well as lobbying to create better policy and supports for autistic people. In addition, they work to place autistic people at the center of all discussion about autism. Many of their positions are in direct opposition to Autism Speaks, but central to their cause is the phrase “Nothing about us without us.”

If you are autistic and would like to work toward autism acceptance, ASAN is a great organization to join. If ASAN has no presence in your area, start one, or start a group with similar goals. There are likely others in your area that feel the same way you do.

At the other end, Kind Tree, an organization based in Eugene, Oregon, prefers to remain apolitical, endorsing neither Autism Speaks nor ASAN. Kind Tree focuses primarily on building community, bringing together parents, professionals, and autistics. In this role, staying apolitical is a strength.

When a child is first diagnosed as autistic, the child's parents are likely to look for any information they can find about autism. If you search for autism in any major search engine, Autism Speaks is likely to be the first link you find, meaning that a parent who performs this search will likely become involved. These parents may feel unwelcome in an organization that would openly oppose an organization that they have become involved with.

However, these parents can benefit greatly by talking to autistic adults. They can learn about how their children think, and gain some hope for the future. This is a role that Kind Tree fills very well. By creating a community that is uninhibited by autism politics, Kind Tree brings together people that might otherwise not talk with each other and learn from each other.

Many people have moved to Eugene from all around the United States, in part because of what Kind Tree offers to the community. Indirectly because of Kind Tree, Eugene also has many supports that are not readily available, or sometimes do not even exist, in other areas. I would love to see a time when every community around the country has a version of Kind Tree.

Even if you do not have an organization to join in your area, and do not have the resources to start one, you can still participate on a smaller scale. I have long made a habit of talking about autism with anyone that is willing to listen. As a result, most of my friends no longer view autism as a tragedy, but as an integral part of a complete human being that may even have some benefits. The results of this reach further than you might think. I have had friends tell me about people they have educated, based on what they have learned about autism from me.

As you are telling people about autism, it is important to educate them about the real actions of Autism Speaks. Remember that most people only know what they see in the public service announcements, and many of the supporters of the organization believe they're doing the autism community good. It's up to us to teach them.

It is true that Autism Speaks has made efforts in recent years to present a more positive image. Unfortunately, the combative language that can be so damaging is still present. The respect for the community still appears to be missing. The belief that autism is a disease that must be cured before the person can be complete is still out in the open. Until this changes, we must continue to work against them. We must show the world what autism can contribute to society.

Celebrate Neurodiversity!

Kindtree Camp: The Ultimate Getaway

If there is one thing every Autistic individual should have, it's the chance to get away from the stigmatizing neuro-normal world to a retreat for just a day or two where they can just be themselves. Free to stim, socialize with others without having to worry about ridicule or having any kind of authority forced on them, eat food that suits their dietary needs, plenty of arts and crafts and other activities to ground them and exercise their neverending minds. Well weekend long is more than any Autist could ask for.

And that's exactly what Kindtree Productions has been providing for the past 18 years. The dream retreat on a beautiful coastal peninsula on the Oregon Coast.

An avid community volunteer realized that Autistics needed this dream and founded and held the first retreat in 1997 at the Community Center in Deadwood with a small group of people. It has grown to 80 volunteers and 150+ guests, including people from out of state. This year we have guests coming all the way from Norfolk, Virginia! How awesome is that! The camp was designed around the needs of and is only open to those on the Autism Spectrum (all ages and areas of the spectrum are welcome). Of course volunteers don't have to be Autistic. 

Zooming ahead to 2008, my close friend who is also Autistic, found the camp information one day and told me about it. We thought it would be fun to try it out so we sent in our registrations and the rest is long history! In a good way :) We were in for much more than we expected. And it has been an amazing experience!

Our enjoyment starts with checking in and getting our wheelbarrows on Thursday (or Friday) until we drive out of the parking lot on Sunday.

We arrive on Thursday or Friday and get checked in and go set up are camp spots. I have a cabin every year due to a health issue, and they are so nice with a modern wood cabiny feel, so I always look forward to setting up my bed. After that I get with my friend and hang out until the opening ceremony that opens our weekend of fun. If we come on Thursday, it is just an evening of dinner and relaxation before the big weekend starts. I may also join in if there is a game of kickball, cards or whatever going on!

We stand in a huge circle, all all 230 of us and introduce ourselves in our own unique way. Then the announcements and finally Ranger Brian comes out and reminds us about leaving the wildlife alone and not having any food in our camp spots. After the opening ceremony concludes, we all head to the line and wash hands for dinner the first of our non-forgettable meals. 

We serve gluten free, soy free options, with healthy food. Salad, Chicken or Egg Plant Parmesan, corn, garlic bread, desert, etc. and a variety of beverages to suit the general Autist.

After dinner and the Piñata, where we get a hand full of candy and stuff after it is broken by us all swinging at and hitting it, I generally use this time to stroll the camp and take in the fresh coastal air. And we all say hi to and Hug Kenny who comes down from Everett, WA and is a lot of people's favorite person there. He's a real teddy bear of an autist who loves and enjoys our camp.  Do some karaoke, hang out at the dance in the Gratke center and go to the campfire. This is always a blast because I so enjoy galivanting around the woods in the dark. I don't know why, I guess I just feel free out there! 

The campfire is ablaze with singing and music and s'mores!

Then it's off to bed and up again for coffee and chatting between 4 and 6am. We get in line for breakfast at about 8. We look forward to the veggie sausage and regular sausage, hash browns, fruit, frittatas, cereal, yogurt, etc. If I am volunteering in the kitchen, then I eat when I am not working.

At 10 am, let the activities and fun begin. I usually start with some crafts or karaoke. I enjoy making a terrarium, doing tie dye, water color, etc. My fiend got me doing it, and as long as I don't suck, it's actually a lot of fun! I'm more comfortable with it than I thought I would be. 

Then I go to the water to swim and/or walk out on the dock to take in the beauty of Siltcoos Lake. I have done canoeing and water exercise (even the Hokey Pokey, which I hadn't done in ages, let alone in the water!

Then we go back and hang out until lunch, which consists of soup, sandwiches, salad, tofu pâté, etc., then afterwards more activities. I get my face painted, watch the human car wash, partake in the group photo, etc. until we line up for Dinner. I may watch a little of the fashion show. There is also the talent show, which I still have yet to partake in. And then later, I get excited for T.R. Kelly because we get to watch her concert at the Chapel. She takes Saturday night away completely. Everyone looks forward to One Size Fits All! And it's a beautiful scene with the chapel all lit up, everyone with their glow toys and dancing and singing along. I also get to walk back to my cabin in the dark afterwards. Fun Fun!!!

Sunday morning starts with Brunch where we put out everything left over from the previous meals. And everything left over after that we get to take home.

After brunch we can do karaoke, treasure hunt, Qigong, maybe the self-advocacy workshop if they have it again this year. Eventually the time comes to form the circle and the closing ceremony to say goodbye until next year! Then we pack up get our food and go.

Other awesome things going on at the camp include the Steel Wool concert, Frankie and Dino concert, martial arts, movies with snacks, volleyball, massages, singing bowls, etc.

The environment of the peninsula surrounded by the lake is as fantastic as the camaraderie at this camp. An example was last year when I got the chills and don't know why. I had a cabin mate who stepped away from her client to make sure I was ok. Accompanied me where I needed to go, stayed with me conversing, distracting me from the chills until they went away, have me water, etc. When you combine these two aspects together with a sea of fun and activities and great food, who could ask for better than that!

The Autist Versus the Government Parasite

Right now about half the nation relies on government help. And about 46.6 million or about 7 percent of the population rely on food stamps. And this group includes many if not most with Autism Specrum conditions as well as other disabilities.

Along with Autism, like many other conditions, can come the difficulty or impossibility of finding suitable work. Thus, the only way to experience an independent life is with Social Security Benefits and Food Stamp (SNAP) Benefits, as well has a housing voucher to cover some of your rent. Student Financial Aid is a big help as well. The government even provides cell phones with unfair and unfortunate restrictions. The government continues to view some commodies the wrong way, which I'll explain in a bit.

Let's start with Social Security. There are different forms. Regular benefits with at least five years work experience, regular SSDI (or DAC (Disabled Adult Child) benefits for disabled individuals, and DAC (Disabled Adult Child) Benefits on a deceased parent's income, which I currently have. My mom passed away in 1996, so I am fortunate to get the 907.00/month I get. Others without a deceased parent usually have around 7 or 800.00/month or less. These funds have to cover one's rent portion, Utilities, my phone, cable and my storage. After my bills I get 100.00 twice a month on a better month. That is max. It has been as little as 30.00. Try squeezing all your needs into that. We also need to shop with a calculator, which we don't deserve to be stuck with either. Now, I intend to do without my storage eventually ( I was going to this  Summmer with a provider's help, but I lost the provider), and my phone and cable could be lower, but why should they. I have the right to possess these valuable productivities. The government sees these as "luxuries". I can't function without my phone, both for stimming and business purposes. I need my cable so I can watch my TV and have my internet for something to do. 2 other cases in point are contact lenses versus glasses and government phones. Contact lenses are used to see right, just as glasses are. So what gives. They are viewed as cosmetic. But some are more comfortable with them as opposed to glasses, so we should be able to have them. Yet, services like White Bird and the Lions Club don't cover them. We get about 20 pairs of mostly ugly glasses to choose from. We deserve to have rhinestones, etc. because we have the right to a nice appearance. I managed to find one pair with a half-decent design with Whitebird. Through the Lions Club I was given a pair that didn't last a month before they had to be repaired. Whitebird ones are still holding out fortunately. 

Along with disability benefits, we have Medicare and OMAP. I had Trillium for mental health services only. In order to qualify for my free Gym membership, I had to change to Trillium Medicare Advantage, which is just as good, but should have had to change to be able to qualify for the Gym? I think not. I also need boots for the lymph edema in my legs, but I don't qualify because it is not the result of a medical issue, etc. It' crazy. Just plain ridiculous. 

Government phones come without texting or internet because the government views them as luxuries. But others view them as productivities and will tell you they cannot function without the internet on their phones. Why is the government so common sense-blind?

Next HUD. There are limited choices for places to live. This is because we have a set rent amount we can't go over as well as other stupid reasons. I greatly need washer and dryer hookups and a dishwasher/Garbage Disposal, but I could not find it. Most places with those commodities either have huge wait lists, rents too high, or don't allow HUD people do to the high amount of required paper work HUD requires that they fill out or they think HUD clients are dirty and ratty. I had to live quite far from the University, which I was attending, due to those complexes near the University not allowing HUD people. Again, not fair. We need more options. I also have a right to a garden and more pets, which I can't have in this 560 square-foot apartment. I have a service pet (my cat), but another pet is an additional 25.00/month. And in this complex we are also being exploited. They force us to pay more money (raise our rent)  if we don't sign a lease. So, you have issues like this also. Complex upkeep may not be the best in come cases either. Fortunately the two swimming pools we have are an unusual bonus. And our upkeep improved some after we got new managers. Also with HUD I can only have an unauthorized person stay in my apartment for a maximum of 14 days. We also have to stay in a complex at least a year before we can move out again. 

Food Stamps. Right now Oregon leads the nation in SNAP Benefit use and child hunger. In Lane County alone nearly 90K people rely on Food Stamps. This is really sad and desperately needs to be rectified. The max benefit amount is 200.00 per month for a single person if you have almost no income and/or you pay medical bills. And TANF benefits are only open to families and include a cash card which covers almost anything. Why the heck can't SNAP be this way. It is just plain unfairness. Or as the Germans would say, Ungerechtigkeit! I am on maximum utilities and I get only my SSDI. Despite these factors, I only get 70.00/month. I realize that's more than a lot of people, but it doesn't get me through the month. In fact, it's gone the day it comes in. We need more help than this, especially with the economy the way it currently is. I have to rely on food boxes. And I only get one box (20 lbs of food) a month. We get four free emergency boxes also, which I have exhausted for this year. We get a total of 16 boxes a year. I also have to eat at the dining room and mission to stretch my food. I can't wait to be able to just go into a store and shop without a calculator, which I must currently do. There's also the limitations on what SNAP benefits cover. We can purchase no hot food, no serious needs like toilet paper or pet food, toiletries, etc. I participated in a phone hearing with my provider to get more benefits last Summer but was unsuccessful. I cannot sell or allow others to use my benefits, and I cannot use others' either or I risk having mine suspended. Also some places still do not take SNAP benefits including the markets at the University, which would have greatly helped me a lot  as I was previously a student there.

The other sad reality many people don't realize is that there are individuals who make 70K plus per year that are receiving more SNAP benefits than I do. Millionaires as well. Something is very wrong there. Those benefits need to go to those who need them. Rich people should not have them to splurge on Fillet Minon. And they admit they could have survived without them. Just search food stamps on Youtube.

Another stumbling block is VR (Vocactional Rehabilitation). If you haven't worked for a period if time, they require one to do volunteer work for a limited time before being placed in a paying position. This, in order to prove you can work because the state wishes not to spend money on someone unless they will be successful in a job. This makes sense, but it can draw out the process far too long. And I go even longer without a suitable income. 

My financial aid helped out greatly in my survival, but I no longer have it. And due to school and my economic hardship, I have a huge amount of debt built up, which I still need to figure out how to pay off eventually. I have been set back also in the way I have had no funds to travel abroad to be able to get the immersion I needed to be my most successful in getting my Bachelor's degree.

Lastly, I would like to talk about my experience with accompanying employed individuals (i.e. my providers). I hate it when I am completely broke and I have to watch them purchase food and other goodies in front of me which makes me feel poor. Kudos to the ones who have helped me out financially out of the goodness of their hearts. But some refuse to because they are not getting reimbursed by the brokerage for food. They only get reimbursed for gas for driving clients around, and not that much either.

So these are some of the setbacks that those of us on disability must face. I hope we can change the unfairness and screwed up governmental ways through God, and Jesus Christ our Lord, as well as through Advocacy with ASAN and other organizations, being like the "Dr. Martin Luther King Jr." for the disabled society both here in the U.S. and abroad.

It is dispicable that our government has such a negative mind frame toward toward us.

Autism in Oregon. Why the High Rates?

Oregon is one of the five top states as far as the rate of Autism goes. The other four are Minnesota, Maine, New Jersey, and Rhode Island. Oregon is the second highest behind Minnesota. And Lane County is one of the highest counties with Autism rates within the state, if not the highest.

The reason for the high rate in Oregon? Educational labeling due to a lack of the requirement of medical assessment prior to special services enrollment in schools. Our students are being labeled Autistic when in fact they have other diagnosis. And kids who are not autistic but are misdiagnosed and labeled as so keep kids who are Autistic from getting Services.

Another reason is families and autistic individuals relocating here to take advantage of the many services and resources Oregon offers Autistics and other disabled individuals, as well as those on a fixed income. We have it much more well here than most of the rest if the country. We have Disability Rights Oregon, the disabilities commission, Autism Society Of Oregon, Mindfreedom, NAMI, and we are starting an ASAN Chapter. Oregon also has two brokerage Service Organizations, which employ providers to assist those with Developmental Disabilities with life skills and community inclusion. Full Access is probably better networked with the disability world, but their providers are becomming too busy to meet with some clients in a timely manner. I have been with Mentor Oregon Mid Valley Brokerage since relocating to Eugene in 2009. I was transferred from Full Access due to Full Access being full. Understandable for this  large and growing area, but they could build more offices and expand as needed. And I couldn't be more happy to be with Mentor. It's the best move ever made on Full Access' Part (Chuckle :). I have gotten further than a lot of clients do with Full Access. They found some great people for me to work with. I am networked with the community more, have a new chapter, more volunteering, etc., thanks to a wonderful Peer Support Specialist they found for me. I'm getting healthier as well. Don't get me wrong Full Access has a lot of great resources, just overly busy. I forgot to mention I even have a basic fishing license from Mentor. And they pay for the Autism Camp through a contract as well. 

We have a bronze medal-winning bus system as well as many taxi services, as well as RideSource for those who cannot handle the buses. Transportation means a lot to non-driving autistics and others and helps them get around. LTD transports those in Wheelchairs, hover chairs, scooters, walkers, etc. If you are with a brokerage, you can get an Annual Bus Pass (paid for by the brokerage) versus the standard monthly and 3 month passes. Brokerages offer taxi services if needed too. 

We also have many great food banks as well as push nutrition and its benefits, both on life and the digestive tract, which is important for Autists. Many have digestive issues and we have a great selection of gluten/casein free and soy, etc. free options. Lane County alone has four wonderful health food stores.  Here we teach cooking classes to help individuals eat healthier and how to get the most out of their food benefits. 

And speaking of food, how many states have a Food Organization dedicated to putting nutrition into their citizens' stomachs? Not many. Food for Lane County has a local dining room, which is free for people to eat at. And the quality and quantity of the food probably tops most other soup kitchens in this country. The Mission is great as well. Many churches provide lunches, etc. as well. This helps stretch our food at home some also.

With the services and resources as well as the ease of getting into special education services, Oregon is experiencing a population boom among Autistic individuals, etc. like never before and the numbers will continue to rise with time.

The Ugly Side of Autism Speaks

NOTE: The following does not represent the views of Kind Tree-Autism Rocks. Kind Tree takes no official position on the actions of other autism-related charities.

The first time I had ever heard of Autism Speaks was a public service announcement, in which the odds of an autism diagnosis were compared to those of your child dying in a car accident. That didn't sit well with me. But at the same time, I wondered if this organization was actually trying to help, and, like so many before them, had just missed the point. Sadly, this does not seem to be the case.

What followed was a long string of announcements and advertisements that continue to make offensive or dehumanizing statements about autistic people. A common theme within the Autism Speaks narrative has been that autism is more common than childhood AIDS, diabetes, and cancer, combined. While this is technically true, it is a horribly offensive comparison to make, as many of us on the autism spectrum do not feel that we are diseased, and do feel that we are capable of living a happy, and in many cases, normal life.

There are two videos in particular that have been made by Autism Speaks, and were distributed via the internet. These are titled “Autism Every Day” and “I Am Autism.” Both of these videos are presented with disturbing background music, and portray autistic children at their absolute worst, providing no context to help explain their behavior.

In the Autism Every Day video, children are shown screaming, as if that's the normal state for them. Throughout the entire video, parents talk about their children right in front of them, as if they aren't there. You don't do this to a normal child, so why is it acceptable with an autistic child? Six minutes and twelve seconds into the video, one of the mothers even talks about wanting to drive off of a bridge with her daughter, and talked herself out of it by thinking of her neuronormal daughter. Her autistic daughter was right in front of her.

I Am Autism presents a sinister sounding voice to represent autism as an entity, trying to take away children. This has been almost universally criticized within the autism community. Frankly, there is nothing about this portrayal that I don't find offensive.

To their credit, Autism Speaks has pulled both videos, but only after much criticism. I could find no acknowledgement of either video on Autism Speaks' official website.

In an interview conducted in September of 2011, Dana Marnane, vice president of Autism Speaks, made the following apology for their offensive ad campaign:

“We are a young organization and we learn as we grow. Without a doubt we have made mistakes – and to those we may have offended we are truly sorry. We never set out to offend. We are sincerely trying to help all those struggling with ASD. The autism spectrum is just that – a broad spectrum – and we respect that there are many different points of view. What touches someone can offend another. What we ask of this community is to also respect that others don’t think or feel the way they do – that doesn’t mean their opinions and thoughts are wrong. We all need to learn to be respectful and compassionate.”

I find this apology to be weak. It is not appropriate to ask for greater understanding of one's actions from a community that has been soundly offended and harmed by those actions. Further, I have seen little change in the tone of Autism Speaks' message since this apology.

So, we've established that, while Autism Speaks is spreading awareness through their public service announcements, that awareness is far from being beneficial to the autism community. But that isn't the only thing Autism Speaks does. What about the research department? Surely, more knowledge about autism must be beneficial.

Autism Speaks spends approximately $16 million per year on research. That seems respectable. But is that money being spent wisely in areas that are of benefit to the autism community? The short answer is no.

Much of the research that Autism Speaks pays for is oriented toward finding a cure or a cause. For significant portions of the autism community, these are irrelevant. Most autistic people do not want to be cured, and all of the likely non-genetic causes have been debunked. Further, Autism Speaks still continued to spread the idea that autism is caused by vaccinations, even after their own science department said that it's impossible.

The autism community would much rather have this money spent on supports and service, and research that will lead to improving the lives of existing autistic people. While Autism Speaks does devote some resources toward these areas, they sadly don't seem to be a high priority.

It may seem surprising that an organization would so aggressively act against the desires of the very people it claims to represent, but it goes even further than what I've said so far. Autism Speaks has a history of making legal threats against autistic people that speak against them. Most notably, Zachary Lassiter for designing a parody t-shirt, and a girl simply referred to as Kelly, the founder of a website called NTSpeaks, both in 2008.

Autism Speaks called off the lawsuit against Kelly after it was revealed that she was 14 years old at the time. They deny making any legal threats against Zachary Lassiter, despite the seller of the shirt confirming the source of the threat.

In 2012, a woman named Simone Greggs was being hired by Autism Speaks. She had completed five interviews, and had passed the background check and drug test. The offer was rescinded after she asked for schedule accommodations for her autistic son.

In addition, Autism Speaks has only had one autistic person on their board of directors, John Elder Robison. Robison has long been an advocate of autism acceptance. He joined the board to push Autism Speaks' actions in a direction more closely aligned with the desires of the autism community. He finally resigned in late 2013, after having made no difference at all.

What can possibly be the purpose of an organization that seems to be so aggressively opposed to the views of the people it represents? In the year 2012, Autism Speaks spent, as I said previously, approximately $16 million on scientific research and awards, and a whopping $2 million dollars on family services. That's $18 million dollars, or 28% of their revenue for that year, on their stated goal. $23 million dollars went to salaries, benefits, and payroll, including executive pay. I think this answers the question.

I'm not writing this to cause despair, or to make your blood boil. I'm writing it as a call to action. The autism community deserves representatives that speak our views, and that share our goals. How shall we push back against the ones that have so abysmally failed us? Leave your ideas in the comments below. Two weeks from today, on July 20^th, I will write a follow-up, combining the best suggestion, some of my own ideas, and some things that are already being done.