Today I am writing about something that has been coming to my attention a lot lately. There is a controversy within the autism community surrounding Autism Speaks. While I won’t go so far as to say all the claims against them are invalid, I will say that many of the claims seem to have more to do with perception rather than reality. Perceptions of words, people taking things personally and assumptions about intentions are fueling this controversy. This is the cause of much of our suffering. This is what leads to our missing out on the peace we could be enjoying. Don Miguel Ruiz wrote a book called The Four Agreements, A Practical Guide to Personal Freedom. With the help of this book, I am going to show how this controversy might be healed by each of us making the four agreements. I hope you will relate these agreements to other areas of your life, as well.
When I realized there is an issue in the autism community with Autism Speaks I assumed that the CEO or a major spokesperson must have done or said something really bad, or maybe the charity was caught spending lots of money on things other than their mission. Looking into it I discovered that the controversy, in part, is due to the way they spend donated money. More often it is with the difference in words used in describing autism, by members of Autism Speaks – as a disorder, as something needing to be cured, as not being typical or normal, as people suffering from it, etc. – and the perspective of autistic people themselves. Many autistic people don’t see themselves that way at all. I read many wonderful blogs written by people with autism, parents of autistic people and teachers. Many of them said basically the same thing; that there is nothing wrong with autism; that there are some benefits to having it and to knowing someone who has it; that they would not want to change or have their children changed in any way. It was very heartwarming and beautiful to read such wonderful things! I also read some that were not based in reality, but in an ego-driven perception of the way they think others see them. They read a lot of innuendo into the words some people use. They made some very harsh assumptions about people, which, ironically, is what they want people to stop doing to them. Let’s begin with the first agreement.
Be Impeccable with Your Word
“The word is pure magic – the most powerful gift we have as humans – and we use it against ourselves.” ~ Don Miguel Ruiz
A blogger for Autistic Self Advocacy Network says in a comparison of Awareness vs. Acceptance, “Awareness says that the tragedy is that I exist as I am. Acceptance says that the tragedy would be trying to make me any other way.” This blogger is making assumptions and taking things personally, but let’s focus on the words they use. The words we use create our own personal truth and reality. I have come to understand that our words and thoughts are prayers that tell the universe what we think of ourselves and what we want in life. What we say is always about ourselves, not the other person. Using the words ‘tragedy that I exist’ tells the universe that is how the blogger feels about him/ herself. That is one reason it is better to be impeccable with our words.
The blogger goes on to say, “People know a few autism factoids such as poop smearing, perhaps about a pop culture portrayal. Probably enough to tell Autistics that we look normal, but not enough to know that everything they think they know about autism is wrong.” Everything they think they know is wrong? This may be overreaching, and again it describes how the blogger feels about self.
This blogger goes on to offer more “factoids” about autism, equating these facts with a gloom and doom mentality. The blogger then writes about their personal behaviors such as hand flapping and tells that s/he does it when happy. The blogger says, “When I am unnaturally still and subdued that is not ‘good sitting’ or ‘controlling autistic behaviors.’” This blogger is trying to change perceptions of hand flapping and sitting quietly, which sounds an awful lot like awareness to me; the kind of awareness that leads to understanding and acceptance. This blogger has made a case against awareness campaigns by Autism Speaks but uses their blog the same way.
The final paragraph of the post is mostly beautiful: “This is my world, too, and I want it to be filled with people who know I am autistic and fantastic… In my ideal world, flapping will be just as acceptable as smiling, earplugs will be a normal sight, AAC devices will be common and everyone will know how to converse with AAC users. In that world, neurodiversity will be just another way that people are unique, and everyone will agree that diversity is part of what makes the world so beautiful.” I think Autism Speaks wants that, too! This is the way we should use our words; to speak about what we do want rather than what we do not want. When we say things like, “I want to live in a world where someone talking in the deficit model of awareness is regarded as uncomfortably out of touch with how things should be,” we leave little room for understanding and help for those who struggle. This blogger sees it as an either/or issue, but there is a huge gray area they are overlooking. Talking about the difficult issues in a factual manner through awareness campaigns is a way of getting ordinary people, people who have no associations with autism, to understand the difficulties that some autistic people and their caregivers face. If we only speak about the lovely things about autism there would be no incentive for someone to donate for research, for therapies, or for help for autistic people of any kind. Furthermore, the lovely things are not the only reality for many autistic people. In an interview with The Daily Beast, Founder of Autism Science Foundation and former CEO of Autism Speaks, Alison Singer, has this to say regarding her daughter, “I have to believe my daughter doesn’t want to spend time peeling the skin off her arm.” It seems to me that Singer sees the validity of not overlooking areas where the lives of autistic people can be improved even if it means some autistics get their ego poked by talking about such things.
Some of the criticisms are due to Autism Speaks failing to have autistic people on their board. Much of my research showed the perception to be that Autism Speaks does not listen to or allow voices of autistic people to be heard. However, I visited their website and found a blog section called Autism Speaks Official Blog. There, I found a Categories menu with 13 different categories, one of which is called Adults with Autism. This section has 91 posts by autistic people. Another claim against the organization is that they ignore adults with autism as if they do not exist. Again, I point to the 91 blogs, written by autistic people. Critics claim they focus too much on children, but their website has a Resource Guide containing a link for adult services. Clicking on the link for my state I found a multitude of services listed there. When we make claims against an organization or a person we should attempt to speak the truth and to be impeccable with our word.
Don’t Take Anything Personally
“Nothing other people do is because of you. It is because of themselves.”
~ Don Miguel Ruiz
An example of taking things personally is when the President of Autistics Self-Advocacy Network, Ari Ne’eman says in The Daily Beast article, “When people say they want a cure its offensive.” Really?! Just because you feel offended by something someone says does not mean it was intended in an offensive way. Why would people seeking a cure be offensive to Mr. Ne’eman? It is because his perception of finding a cure would be to “get rid of a population of people.” To me, that is a big stretch and an example of taking something personally that has nothing to do with you, not to mention the words you put out into the universe about a population of people!
I am all for self-advocacy. It thrills me to no end that people advocate for themselves and I want that to continue. Autism Speaks would do well to have more autistic people on their board. Please don’t take it personally when parents continue to advocate for children and adults who cannot advocate for themselves. We simply want our kids to receive the supports they need. Self-advocates say that Autism Speaks does not speak for them. Self-advocates that have little trouble communicating, or trouble defending themselves, or shaving, or need a guardian or any other issue some of us deal with on a daily basis are not speaking for my son and I don’t need them to. Far too often I have sought help in certain areas only to find that the help was geared more towards people who are higher functioning and who can understand more than my son is capable of understanding. Families like mine need organizations like Autism Speaks to get our message out; to speak about the realities we face daily and offer understanding when we feel alone, to offer us help that higher functioning individuals do not need, and to help find a cure for those who want it.
Don’t Make Assumptions
“We make the assumption that everyone sees life the way we do. We assume that others think the way we think, feel the way we feel, judge the way we judge, and abuse the way we abuse.” ~ Don Miguel Ruiz
Some of the blogs and articles I read are slamming Autism Speaks for the language they use on their website. This is another area where our Egoic perceptions come into play. Autism Speaks is not necessarily talking about every case, every person or every situation when they use words like ‘suffers from’ and ‘debilitating.’ Autism Speaks should consider changing their words and concentrating on the facts rather than putting words out there like those, although when I visited the site I did not see that type of language. I did not check every page, however. When an autistic person reads these words, I can see how they might internalize them and make them part of their identity. I can see how they could assume that everyone who reads those words may associate those words with every autistic person. However, this is just an assumption the reader is making. It is perception and not necessarily reality. It is that simple. We don’t have to make these assumptions and we don’t have to make someone else’s experience part of our identity.
My son cannot have some of what I want for him because of autism and his mental challenges. Those are facts. I was not always okay with that. There are some things I would like him to recover from. You may not like it. You may think I am a horrible person. You may not understand because in previous posts I have said he is perfect. Let me make this clear, HE IS PERFECT. He is as God made him. I have learned so much from him that I have not begun to scratch the surface in the posts I have written so far. I do not take one shred of dignity away from him when I say that I want him to get better in some areas. I love him unconditionally. I love everything he has given to me and done for me. I owe the woman I am today to him because he is in my life and because he is autistic and mentally challenged.
There is an ego part of me that identifies as his mother and, as much as I have been helped by him, that part of me would sacrifice all of my personal growth if he could have the life I want him to have. I want the world for him. I make no apologies for that. He is my son; my heart; my soul; my flesh. I would not change one thing about him. I want him to be helped. One does not contradict the other. He is as God made him, but I do not believe God wants us to remain the way we start out. We grow physically and mentally. Our learning develops. It is a natural part of life. Do not assume that my wanting his life to change for the better means I think he is less than perfect or that my wanting him to not be vulnerable physically and financially means I think there is something ‘wrong’ with him. Is it wrong of me to wish he would not remain vulnerable for his entire life? Is it wrong of Autism Speaks to want these things for all of our children and adults? To use a phrase from Alison Singer, I have to believe it is not wrong. I believe they are not purposefully taking anything away from autistic people in their efforts to find a cure and to help people recover. I believe that my son wishes to not be vulnerable, to be more independent and to have a more typical life. I believe he wants to enjoy some freedom from his challenges. Would he want to change everything about himself? I hope not. I love the way he can walk into a room for the very first time and instantly pick out trains and clocks when I would not have noticed them after being in the room for hours.
Maybe my perspective of wanting some things to change has more to do with his mental challenges than his autism. I don’t know for sure. But I know that some people on the spectrum injure themselves. People do not behave this way if everything is fine and dandy. There are people on the spectrum that cannot stand loud noises and that cannot stand to be touched by anyone or anything. I believe they would want these things to get better. We cannot ignore those who want help just to avoid offending people who assume everything we say and feel is about them.
So now the question becomes what could Autism Speaks do the keep from offending autistic people with the language they use? The short answer is nothing. There is nothing they could say to keep from offending people. People are offended because of their own assumptions. It is not offensive language they are using. They are not using the R word. As far as I can tell they are not mandating that everyone should be cured or recovered if they don’t want to be. They are not holding a gun to anyone’s head. They are simply saying they want something more for their kids and for people who are suffering from their autism, they want to understand why autism occurs, they want to understand the origins, and they want to help people live the best life they can. If you read that as, “something is wrong with every autistic person that needs to be fixed,” or “this entire group of people needs to be eliminated,” then that’s on you, not them. You are taking it personally and making huge assumptions.
Always Do Your Best
“Always do your best – in any circumstance in your life. If you always do your best there is no way you can judge yourself. By always doing your best, you will break a big spell that you have been under.”
~ Don Miguel Ruiz
One woman claimed that when a child is newly diagnosed with autism and the parents search the web for help, they are driven to Autism Speaks’ website where they are met with a barrage of negativity, fear, and tragedy. I did not find that to be the case when I visited the website. I found nothing politically incorrect or offensive. I did not find anything that connoted a sense of tragedy or fear. It seems to me that Autism Speaks is doing their best to use good language and to help people who need and want it. If you are autistic and reading this, I simply want you to see that you control your thoughts and emotions, not Autism Speaks. You have control over what you want to change or leave the same, not Autism Speaks. It does not have to be a battle. They are advocates for people who want and need advocacy and they take nothing away from your voice. You can do your best to advocate for your rights and your feelings, right alongside them. It does not have to be one way or the other. We can all work together and advocate for each other.
Words matter and we should not knowingly use words for harm, but there are times when there are no proper words to use. If I say I want my son to get better and that offends you, there is nothing I can do about that. I don’t mean for it to harm you. It has nothing to do with you. It only has to do with me and my desires and what I believe in my heart are his desires. I am doing my best to help him. Always do your best to understand someone’s motives.
The R word is offensive to many people, but not to me. I see it as a medical term, but I support the Spread the Word to End the Word campaign because I know that people are not always impeccable with their words and people do take things personally. When it is not being used as a medical term but as an insult, it still does not offend me because I know it has nothing to do with my son. It has everything to do with the mentality of the person using it as an insult. They are obviously not self-aware enough to know they should not use it that way. I have compassion for ignorance because I was once very ignorant on certain subjects and probably still am on some others. I do my best to learn more every day and to use the language I have been taught to use when addressing a group of people. The words mentally challenged have replaced the R word, but if you go to #mentallychallenged on Twitter you will see those words being used as insults. So what words will we use once we find the need to ban mentally challenged from our vocabulary? Everyone in the autism community from autistics to parents and teachers must begin to realize that our words can be changed and our perceptions of those words can be changed, but until we stop something else, none of that will matter.
The issue is that we allow insults of any kind, using any words at all, for any reason. We ignore our religious and spiritual teachings when we allow bullying. We allow ourselves to do it on social media and elsewhere. We say we don’t like bullying, but we do it ourselves in many ways and disguise it as a joke. I feel like we need to address every cultural difference we have and teach our children that there is never a good reason to call someone a name or treat them differently than we want to be treated. Unfortunately, our churches, our politics, and our media sometimes help to promote hate and intolerance. That is what needs fixing; not our vocabulary. These changes start with you and me. If I do my best to stop hating, if I stop blaming, if I stop assuming things about people, peace will come.
We can use awareness as a tool for greater acceptance. While we have to remain conscious of the things we say and how the words we use may be perceived by others, doing our best not to offend, that does not make us responsible for the way others perceive our words, for the assumptions they make about those words, or for what they take personally. It is the responsibility of each individual to create a peaceful world based on their own choices. That’s just my 102 cents. Thanks for sticking with me in this l – o – n – g post!
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