Am I comparing Autism Speaks to the Netflix show House of Cards? Why indeed I am. I watched the series just this week and noticed similarities in the politics of one’s personal agenda that led to the underhanded, spiderwebish manipulations, the ego-stroking, strong-arming, and fear-mongering of people and their destruction, without a single thought or care. I have yet, to hear or read the countless ways Autism Speaks has actually helped families – they are a directory of support. They funnel you through all sorts of links (link farm) and can connect you to the services that have shared their link/contact information with them. They do offer tool kits, blog posts sharing the latest Autism news or scientific “breakthroughs”, and other tidbits of information that may be beneficial to people.
However, on a personal level, I honestly have not seen much evidence of their contributions in real-life scenarios.
The local chapters I’ve contacted, in the early years, were happy to direct me to therapists and tried to convince me to jump on board with their local walks and fund-raising, but they could not help me directly with our financial burden and lack of insurance. That is my experience; maybe others have had more beneficial outcomes. After my experience, I pretty much forgot about them because my time was better spent on helping my child in our everyday life. Because they could not help, I did not see a reason to support them. My little bit of money went toward used books so I could learn about Autism, Occupational and Speech therapies, sensory processing disorder, and purchasing the cheap equivalents to the items that I needed to do the therapies.
I still had very little knowledge about Autism Speaks at the time.
Through the years, I have seen the damage that their negativity has caused in the Autism community. I sobbed for days when I saw the “I Am Autism” video. Keep in mind; I did not know that I too was Autistic then. When I watched it, my heart felt like it was being cut into shreds. I thought of Daniel and could not understand how people could say such things especially, in such a terrifying way. For some insight at the time, Daniel was in full on meltdown and self-injurious mode hours and hours at a time not stopping for days. That went on for a few years, but I try not to talk about it unless I feel it will help someone gain understanding. I do not talk about all of the other things that happened either – I won’t.
I was exhausted and desperate and still could not look at my son or Autism in such a negative way.
I wanted the suffering to stop, but I knew there had to be better answers than, medications or “fixing” him. Autism Speaks keeps a nice divide between parents and those who are Autistic. They manage to keep an image of an Autistic child who never seems to grow up. Any chances of their adulthood are bleak, miserable, of no value at best. I believe this is part of their marketing ploy because it helps keep their message on the front lines – practically anyone can empathize with a suffering parent and a child “who seems trapped” inside themselves. It was not a huge public deal when they appointed John Elder Robison to their Scientific Advisory Board. After Suzanne Wright’s recent statement Autism Speaks to Washington – A Call for Action, he has resigned (see I resign my roles at Autism Speaks).
I had great hopes that they would listen to him and see from a different perspective.
I had hoped this would manifest an open line of communication between those who have the money and those who are Autistic – it seemed as though their efforts were merely token. They have wasted a valuable gift – a voice that can speak for those children and enlighten parents. Not only him, but the multitudes of us who can speak or type or draw or use some sort of technological device to share what is going on in the minds of Autistics. I do not claim that we know every person’s child. There is no way any person can understand another’s situation fully. Each of us are different, I have two boys on the spectrum, and they are very different. I am very different from my mother, but we do have many similarities and insights.
I find it perplexing that people continue to guess, wonder, and sit in despair about their child (ren) when WE ARE HERE.
We DO have some answers and can be beneficial. What I find incredibly ironic is that people feel desperate, yet they continue to listen to messages that feed their fear. The many Autistics (verbal and non-verbal) offer you hope. We offer helpful, useful, and practical information. I have read from some parents who feel attacked for wanting a cure for their child and I have seen them attacked. I want to share a little from my perspective with no hostility or condemnation toward you. I understand what it is like to watch my child suffer and not have any way to help him. I understand the desire to “fix” and want a child to be able to do “normal” things. I understand the desire to have a “normal” life. I understand not wanting to be exhausted, fatigued, and longing to have a day where you do not feel alone.
I understand the fight you feel everyday and that some days it feels like too much to get out of bed.
However, you do it. You find some sort of strength. You find your hope, you squeeze something out to motivate yourself, and most likely, it is the love that you have for your child. The medical community and professionals who feel they know what is best have bombarded us with information about Autism. I believe that that it is important to take into consideration what the professionals have to say, I also, believe that it is vital to the community that people remain open to hear what Autistics have to say and bring balance. There are also the pseudoscience folks who can give you all sorts of hope. They give you answers and in some cases, these things can work; however, in some cases, it makes things worse. Ultimately, you are looking for hope and answers. Why not ask Autistics? Why not speak to us?
I am very confused by the rejection and hostility that is the community.
I can understand that both sides feel unheard and feel that the other cannot empathize, but that is not true. I am on both sides: an Autistic with Autistic children. I have experienced firsthand the rejection and pain of being Autistic, but not knowing that I was Autistic. Then, rejoicing in finally having answers only to have it stripped from me because of the attitudes and actions from organizations like Autism Speaks. I find it even more confusing that people would give large sums of money to an organization that fails to give funds toward helping Autistics and very little goes into research. I am baffled that people do not question that the founders themselves are professional marketers. They are business people and know how to brand, manipulate media, and redirect the focus or blame.
They have connections and money.
Many of us in the Autism community are scraping and clawing trying to get services. We are on waiting lists, sitting in IEP meetings. We are praying and pleading that our child(ren) will qualify while these people are going to galas, rubbing elbows with politicians, and playing with large sums of money that will not go toward research to advance therapies, methods, or implement strategies for helping Autistics and their families. I know that I can get lost into my “connections” and thoughts, but the other night while watching House of Cards, I was struck with thoughts about Autism Speaks and their connections with the government. That may sound like a conspiracy theory, but in saying this, my intent is not in that direction.
My true thoughts are Autism Speaks is not helping the people that they claim to be helping.
In the political arena, it seems that money comes in droves when you focus the message on children. I have not dug too deeply into Autism Speaks, but I really do not need to understand the political gains that can manifest from such an organization. Maybe it started out as something else, but as it is in its current state, I would say that it is a brilliant smokescreen for something else. What that is I have not a clue, nor do I care. What I do care about is trying to help people understand that they are not helping the Autistic community by ignoring Autistics. They are not helping families by feeding them fear or promises of cures. Their “scientific” contributions has not brought any great understanding or eased anyone’s suffering.
I have no respect for how they handle their business.
Have they helped people? I am sure they have in limited ways. Many organizations end up helping some people, but I do not think they are in the “helping” business. I think they are in the political financial business. I do not feel that they offer lasting real hope and I do not believe their efforts have made a positive impact on the Autism community. Their name, emblem, and color are so dominating and “pretty” that they have drown out the voices who continue to scream until we are hoarse. They are in Washington D.C. dominating while our small voices are trying to burst through and create a powerful blast to bust open the façade that they have created. Though I cannot speak for anyone else, I believe that many of us Autistic and Alltistic alike want to change the paradigm of how people view Autism.
I do not believe that Autism Speaks speaks for Autistics or parents/caregivers of Autistics – I think they speak for themselves.
I accept that some Autistics wish for a cure. They are unhappy and in tremendous pain. I do not want to dismiss their feelings. I have had my moments of having these types of feelings. I wanted Daniel “healed” when we discovered he was Autistic. However, over the years, I have witnessed huge changes in Daniel since I adopted a more accepting mindset. I have had major changes within myself since I have become more accepting of myself. I cannot say that would work for everyone and I do not speculate that it would. However, it isn’t right that Autism Speaks is the loudest, most powerful voice for those who are Autistic and those who care for those who are Autistic. I am excited to see so many parents speaking up and letting Autism Speaks know that they do not speak for them.
They have hope. They are the change.
I am excited to see my fellow Autistics standing together to make us seen. They are the change. They are hope. Our message should be that of hope and support. People have put their hope into an evasive promise of something – why not invest in real communication, answers, insights, and learn how we can be there for each other. Is that my “House of Cards” argument? Hopefully, not. (play on words) I think something significant has occurred in our society this week that will continue to change the lives of those who are impacted by Autism. I wonder what will happen. I wonder what cards Autism Speaks is going to play, what will be their next move be to appease the masses and continue as usual. It doesn’t matter because the small voices are getting louder.
Some things to think about …
“Many studies have shown that we care more about the threat of bad things than we do about the prospect of good things. Our negative braintripwires are far more sensitive than our positive triggers. We tend to get more fearful than happy. And each time we experience fear we turn on our stress hormones.” ~ Why we love bad news
“We have a negativity bias, which is the tendency to give far more information to negative details than positive ones and the confirmation bias, which is our tendency to selectively look at information or see information that confirms our preexisting notions, which is fine except that our preexisting notions are typically negative and therefore, we’re reconfirming our negative expectations.” ~ by PETER DIAMANDIS – Why We Love Bad News: Understanding Negativity Bias