An Open Letter to Jerry Seinfeld

Jerry seinfeld looking charming as usualDear Jerry,

I feel I may call you Jerry now, instead of Mr. Seinfeld, for you have declared that you are one of us: those on the autism spectrum. That means you have declared yourself to be a member of my neurotribe and at least a cousin, if not a brother. Welcome to the family.

I had some disagreement with other members of our tribe about your “coming out.” Some are not so eager to welcome you as I. I have been told that since you are “self-diagnosed,” you do not count. I replied that there is so much stigma involved with being Autistic that I am happy to greet you all the same, because you may be taking the label yourself, single-handedly, but it is a label that comes with so much judgment and social censure that, while I am proud of being Autistic, I also recognize that it is not in the same class as diagnosing yourself beautiful or talented or rich.

I have been told that no famous person should make this sort of announcement, but I think that attitude is part of the overall stigma that I fight against every day. Many of us, even those of us who are not self-diagnosed, constantly have to cope with an image problem. Because I write well, I am told I can’t possibly be Autistic. A friend who presents in front of audiences with the poise and eloquence of a classical orator is told that she isn’t Autistic enough or doesn’t look Autistic. Any marker of success we show in the world is used as evidence to attack our integrity and our identity. How much more is that trend continuing when someone says you cannot tell the world that you perceive yourself as being on the autism spectrum because you have had a successful career, a television show, and so on?

No, I welcome you as one of us. You have learned about autism and you have looked into yourself and seen autism inside you. You are willing to come forth and risk censure and ridicule when you tell everyone that you see autism there, inside yourself, and you identify with it. As you can see, the critics come from all sides, even your fellow tribe members. But I welcome you and I hope that you will choose to do much good on behalf of those of us who resemble you in one way or another.

You believe you have done good for us already, through your work with Autism Speaks. But I am here to implore you to look further into that organization and choose to stop supporting what they do. You have identified as one of us now, Jerry, and that means you have an obligation to serve our needs from within, as a brother, as one of us.

Autism Speaks says terrible things about us. They hire other people to say terrible things about us. They craft messages of horror and despair about us. Last year, 43% of their budget was devoted to advertising. From 2012 to 2013, they increased advertising spending from $2.2 million to $52.2 million . . . . a 2,260% increase in funding for sending the message that we are an epidemic, a tsunami, a devastation that destroys marriages, that is worse than diseases that kill people. Think on that for a moment, Jerry: you have been supporting an organization that says that people like you and me are worse than deadly diseases. Is that where you want to put your time and money? Do you think you are a blight? Do you think I am?

You have always seemed to me like a kind person, someone with compassion in his heart. You have always seemed like someone who observes human nature and points out the absurdity of it, but in a way that could only come from someone who genuinely loves people. You find humans lovably absurd. I have always felt that you are a good and loving person.

The good and loving thing to do is to stop supporting an organization that claims to help Autistic people yet only puts 4% of their budget toward the goal of actually helping Autistic people and our families. 13% of Autism Speaks’ budget goes toward what they call “scientific research” but what is actually genocidal research designed to ensure that people like us are never born again, whether through discovering causes and eliminating them or devising a pre-natal test so that we can be aborted before we ever get a chance to take a breath. This is how Down Syndrome was “battled.” An estimated 90% of babies testing positive for Down Syndrome are aborted now. Do you think I should have been aborted? Do you think you should have been aborted, Jerry? Do you think the world would have been a better place if you had never been born? I don’t think that about you at all and I plead with you to stop supporting an organization that does believe that. Autism Speaks is an organization that is working toward a goal of “curing autism” and that goal means that people like you and me, as well as all of our beautiful fellow neurotribe members, will be wiped from the face of the earth.

I do not think that would make the earth a better place at all. I do not think destroying an entire neurotype is the way to make anything better about our planet. I do not think we should let anyone wipe out a people who are noted for, among other things, a very strong sense of justice and a depth of compassion so deep that we are accused of lacking empathy when we are forced to turn away from the extreme pain we find when we engage this world that can too often be harsh and cruel.

I would urge you instead to support organizations that are supported by your fellow Autistics and that support the needs and goals of Autistic people, not of those people who would seek to destroy autism and Autistic people.

Jerry, please turn your efforts toward groups like: The Autistic Self-Advocacy Network (ASAN), The Association for Autistic Community, Autism Women’s Network, Association of Programs for Rural Independent Living, Autism National Committee, National Council on Independent Living, Ollibean, Taishoff Center for Inclusive Higher Education, or any group that supports Autistic people as fully human, fully participating, fully respected, fully supported members of the community of humankind.

Thank you for reading this, Jerry. And thank you to everyone who read along with Jerry. This is my plea not just to you, Jerry, but to the world. Some Autistics have found worldly success, like you, Daryl Hannah, Dan Aykroyd, and more. But most of us need so much help and support. We need acceptance and accommodations. We need you on our side, Jerry, now that you have realized that our side is your side, too. Why do I not care whether you “really” are on the autism spectrum or not? Because the oppression of any person is the oppression of every person. Whether you “really” are Autistic or not doesn’t matter because our battle is your battle anyway. We are fighting to be recognized as wholly human, worthy of dignity and respect, worthy of participating fully in the community, deserving of acceptance and assistance. We are asking to be known and wanted and treated well. We are telling the world that we have so much to offer if others will be willing to meet us half-way and accept what we bring to society. The world needs Autistic people, Jerry, and whether you are Autistic or not (and I am happy to believe you are, and to welcome you to the neurotribe!) it is time for you to see the harm that Autism Speaks does to our cause, our hopes, our dreams, our needs. We want to be part of the whole human family and Autism Speaks seeks to cast us out from the world forever.

Please join us, Jerry. Please join your people. Please be fully one of us — not just in name or public recognition, but in heart and spirit and soul. Please do not support groups that want to hurt us and erase us. Please work to help make the world better for Autistics — better for me, better for you, better for everyone like us, our tribe, our family.

Thank you, and I hope you will investigate the organizations I mentioned above and choose to put your energies and resources with us instead of against us.

My Love and Respect to You,

Sparrow Rose Jones

What Does Helpful vs. Harmful Therapy Look Like?

About a month ago, I wrote about the types of therapies used with Autistic children. I mentioned the sorts of practices that are not advisable and what to look for to see if the therapy your kid is getting is helpful or harmful. I was thrilled to hear from lots of parents whose children are getting great therapy that builds them up in many ways. I am so happy that there are professionals out there who understand autism and work to help kids grow up to be their happiest, most productive Autistic selves instead of training them to pretend to be someone they aren’t.

Many other people asked for something more specific than the words I wrote. Some people gave me links to videos and asked me to comment on them. Others asked me if I had videos that showed good or bad therapy practices. That’s what this post is all about. This is important stuff and many people specifically asked me to do this. It is not my intention to publically shame anyone by using publically available videos. I am sharing one video that I found particularly disturbing and two video examples of good therapies in the hopes that seeing these examples will help make the ideas I write about more visual and understandable.

I’d like to start with a four minute video titled “Isabella 22- Knock-down drag out battle for Severely Autistic Child to attempt Speech“. I want to warn the sensitive that this is a difficult video to watch. Many of my Autistic friends were unable to watch the video or could only watch a few seconds before they had to turn it off because of the level of suffering and because of the difficult memories it triggered in them. I watched this video several times so I could analyze and write about it and it was very hard for me, too. There are reasons why I am only sharing one example of harmful therapy and one of those reasons is that I just can’t handle watching very much of it myself.

And, again, I want to emphasize that I am not accusing Isabella’s parents of anything. I am 100% sure that they are loving parents who care deeply about their child and her future and who believe that they are helping her to have a better life with the therapy they are providing for her. But I cringe in pain when I see what the poor girl is being put through in the name of helping her. I assume her parents put this video online to help others know more about therapy. Please take my comments in that light as well.

Let me start by talking about my broad impressions of this therapy session. Just the title of this video is a first clue about the attitude the adults in her life have toward Isabella’s therapy. They call it a “knock-down drag out battle.” Now, I’ll be the first to admit that parenting, or being parented, can often be a battle of the wills. I was a pretty difficult kid and I’ll admit that. But this video is nearly four minutes of Isabella crying with frustration and confusion while her therapist repeats “ma ma ma!” at her, over and over, trying to get Isabella to say “mama” and get gummy bears as a reward.

The therapist showed her candy, then withheld it from her while making lots of confusing sounds at her and leaving Isabella to try to figure out what the heck was going on, what was expected of her, and why she could see but not get the candy. If I dangled candy in front of a child but refused to give it to her and made her cry with frustration, you would call me a bully and say I was taunting the child and that I should stop making the little girl cry and just give her the candy, right? But because Isabella is Autistic, some professionals believe it’s not cruel; it’s therapy.

There are so many important things to say about this short video of a therapy session. Something really important, though, is that this is not in line with the ways language acquisition occurs. What is happening in this therapy session is closer to the way animals are trained to perform tricks. When I was a pre-teen, I taught my standard poodle to shake paws. He never understood what a handshake meant to me — all he ever knew was that it made me very happy if I put out my hand and he put his paw in it. And he liked to make me happy, so he learned to shake paws very quickly and would do it every time I offered my hand. And I never used food to teach him, just affection. And I never made him whine with confusion or behave in a distressed manner.

Now, I don’t mean to compare an Autistic child to a dog. That would be demeaning. But look at this speech therapy and tell me that Isabella is not being trained like a dog to mimic a behavior she doesn’t understand any more than my dog understood a handshake. In fact, Isabella is being treated far worse than most dogs are treated, because she is in real distress as she tries to get the candy and has no idea what is going on or why she keeps getting teased with candy. This is exactly the sort of trial-and-error behavior shaping you see when people train monkeys or bears to perform in circuses. It assumes that the subject being trained is incapable of understanding anything and must be bullied, badgered, and tempted until it randomly performs the act (or makes the sound) and then operant conditioning is applied to strengthen the desired response. This is not speech therapy, it is monkey training and, my apologies to Isabella’s parents, but it is painful to watch. This is not a therapy that respects Isabella’s personhood or addresses her needs.

Not only is this treatment cruel, it is setting the stage for potential future violence. This kind of therapy creates massive amounts of frustration in people who have limited ability to express their needs and wants and who are often not allowed agency or autonomy. Right now, Isabella is wringing her hands and pulling at her clothing. How much of this can she take before she starts pushing the therapist away? When pushing doesn’t make the frustration stop, how long will it take before she resorts to hitting or biting? I was a hitter and a biter, and just watching Isabella’s frustration makes me want to forget everything I’ve learned that keeps me from hitting people now.

This is really important. People worry a lot about their “violent” Autistic children as they get bigger and stronger and harder to control. But far too often, the “violence” is stirred up by years of very frustrating therapy just like the session you are seeing in this video of Isabella. There’s only so long that a person can take being pushed into sobbing meltdowns of frustration before they are willing to do whatever it takes to get the torment to stop. It is not only heart-breakingly cruel to treat a child this way, it is grossly irresponsible. Therapy like this creates problems. The best it will produce is a child trained to do things that make no sense in order to avoid distress and get rewards. The worst it will produce is a child that bites, kicks, hits . . . and gets bigger and stronger along with becoming less and less controllable. This therapy is not designed to raise a child who feels safe and comfortable with who they are, who feels safe to express their individuality, who is mentored in growing and developing into the best person they can be, expressing their true nature in ways others can come to connect with. The goal of being “indistinguishable with their peers” is a goal meant to make other people feel comfortable and happy. The goal of any therapy for an Autistic child should be to help the child feel more comfortable and happy. Therapy is not supposed to be about performing for others — it is supposed to help a person grow and express themselves in the truest, healthiest way possible.

At 58 seconds, Isabella gives up and starts to wander away. The therapist gets her attention and shows her the candy again. Isabella goes back to crying because it is so frustrating for her. From her perspective, she is being teased and taunted with candy she can’t have. She doesn’t understand what the therapist wants from her and she is filled with anger and frustration and probably a massive sense of unfairness about the whole ordeal. At 2:20, the therapist says “any sort of verbalization.” Isabella is making plenty of verbalization and some of it is even pretty close to an M sound, but the therapy continues and those verbalizations aren’t rewarded. How confusing for the little girl!

And listen to what one adult says at 3:25 – “we can’t let you win.” What? Isabella is frustrated, angry, upset, crying, has no idea what they want, has made lots of “mmmmm” noise, has put up with having her lips pinched, having people make tickly uncomfortable sounds against her forehead, and the adults are framing the whole thing as some kind of battle of the will that they can’t let her win? This is not a game to the little girl. She is not resisting making the sound because she is obstinate. That comment, about not letting her win, is possibly the most upsetting thing about this video for me. It’s not a game. It’s cruel. It’s confusing. And I am sure that Isabella is not thinking of this session in terms of getting the upper hand or refusing to give the adults what they want.

So how else can speech therapy look? Well, here’s an example: RPM – how it’s helping non-verbal autistic children. These are not isolated cases — I know children and their parents who are using RPM to learn expressive language. Over and over, I hear the same story: the people around a child think they are “not in there,” are deficient, incapable, not understanding, unable to communicate, or other similar or related thoughts. Then RPM is brought in and suddenly everyone is shocked to learn that the child they thought was “sleepwalking” through life was actually soaking up knowledge like a sponge. I have also known parents of children who did not get any kind of language therapy but their child spontaneously began spelling words on an iPad or with magnetic letters.

I have a few big problems with much of the standard speech therapy:

1. the emphasis on speech-only. I won’t deny that speech is very important in this world, but some people never speak. Will we never give them a way to communicate? To me, that feels like punishing someone for being unable to speak. Deaf children who are taught sign first have better overall language skills, whether they learn to speak later or not. Their written English is better if they are allowed to start with sign instead of being pushed to only speak and write English. Autistic children are the same way. If you want good future language skills, don’t insist on only one method of communication now. Allow signs and gestures. Work with pictures. Try RPM or another similar method of spelling. Try everything and don’t make your child get stressed about language. The more you can open up your child’s options for communication now, the better their overall language acquisition will be for the course of their entire life.

2. The emphasis on getting children to say things that please others rather than things that please parents. Isabella was supposed to say “mama.” Over and over, I hear parents say they suffer because their child doesn’t say “I love you.” I find it unsettling that there is so much focus on getting children to say things other people want to hear. I rejoice when I see children learning to say “I’m hungry” “I hurt” I want” and “no.” Teach a child the things the child will want and need to say. “I love you” can come later. Be honest: those three words, “I love you,” are for you, not for your child. Therapy should not be selfish — it should be about giving the child the tools that are important to the child.

3. The teaching methods that involve lots of emotional stress and confusion. Don’t underestimate Autistic people. We often look like we aren’t paying attention and aren’t understanding. Give us a chance. Don’t just assume that you have no choice but to train us with candy and tears. Look for therapies and teaching methods that enlist us as partners in our education.

I have another video to show you. I asked my friends to share therapy videos they especially like and this five minute Sensory Diet therapy video came from Cynthia Kim at Musings of an Aspie.

First, look at how much fun the kids are having! This is something I heard a lot from parents after my ABA post last month — that their children love the therapy they get and they laugh and rejoice and only cry when it’s time to leave because they want to keep going. That warms my heart beyond the telling! Yes! If your child loves therapy, you chose well.

This physical play therapy the kids are doing is really important stuff. The narrator mentions that the play is engaging their vestibular and proprioceptive senses and helping them to feel like they are a part of their body, connected. It is impossible to overstress the importance of this sort of sensory play. I am here to tell you that feeling disconnected with one’s body has repercussions you can’t even imagine. I work to get “in” my body more and my body-mind disconnect affects nearly every aspect of my life. It is imperative to know, hear, and trust your body. Help your child to feel more connected to their physical existence and you will have a calmer, more centered, more confident child.

The kids are learning other stuff in this therapy, too. They are learning interaction with others, they are learning to ask for what they want and need, they are learning to take turns and consider others. There is a lot of social learning that is happening while they are focusing on body learning. This is great therapy! I admit, I’m a bit envious — I wish I could go play, too.

I hope that sharing these videos and talking about them has helped to make the idea of helpful vs harmful therapy more concrete and clear for you. I sometimes hear parents say that these ideas are great for kids wil “mild autism” but their child is “too severe” and needs more. You might already know that I feel that separating the Autistic world into “mild” and “severe” (or any other similar division you might choose) is harmful to all Autistic people. But beyond that, thinking this way about your child is harmful to your child. No child is “so severe” that they need to be made to suffer. If therapy time is stressful for your child (and especially if therapy time is stressful for the whole family) you really want to think about the therapy you’re using and what the goals are and whether those goals are worthy of your beautiful child or not.

I want to leave you with a link to a blog entry — Caregiver Burnout from Love Explosions. The entry was written to address parents who feel burned out with everything that goes into caring for autistic children, but it is far more valuable than just that stated goal. read this blog entry because it paints a picture of what a healthy family looks like. The author has two beautiful daughters, one of whom is Autistic. If you are one of those parents who thinks the ideas I’ve been talking about here don’t apply to your family because your child is “too severe,” you should know that the Autistic daughter in the Love Explosions family is non-speaking and has epilepsy and is, by any way you would choose to measure “very severe.” (Although that is not the way I think of Evie! To me, she and her sister are beautiful, bright, wonderful girls who I think of first as little sisters and second as dear friends.)

This blog entry will show you what a happy, healthy household with an Autistic child can look like and what “therapy” and education for an Autistic child who is developing wonderfully into a healthy, happy Autistic adult can be. There is a lot to learn in Beth’s entire blog, and there is much wisdom to be gained in this one entry about living happily together as a family. I urge you to read Beth’s words and take them to heart.

A Mindful Experiment: Using Meditation to Regulate Intense Emotions

I have always had volatile emotions. One popular (though deeply unkind) description of Autistic people is as “emotionless robots” — a description that doesn’t even start to approach the emotional mess of me. If I hadn’t met so many other Autistics with intense, messy emotions, lots of grief and rage, difficulty suppressing emotional impulses, I might continue to question my diagnosis. But there are plenty of us out there with hair-trigger emotions.

And so many Autistics are like me in that strong emotions, even our own strong emotions, are completely overwhelming to us. Emotions are like being drowned at the beach and before I can get up from being knocked down by a giant wave of emotion, I get knocked down by a wave of overwhelm from having too much emotion. It’s easy to get stuck there, battered by waves coming from within. I once watched a short video in which an Autistic pre-teen talked about typical people having a bucket for emotions (and sensory inputs) while Autistics often only have a tiny teacup (or in the case of senses that need extra input, a swimming pool.) It’s a great analogy. I have a swimming pool for proprioceptive input that’s almost impossible to fill and I have a tiny little teacup for emotions and too often I’m trying to catch ocean waves in it.

Recently, I found myself caught on the beach again. Events stirred strong emotions and follow-up events kept making things worse, not better, and I found myself in a downward spiral of too much emotion and too much overwhelm from too much emotion causing even more emotion. It drove away the partner I’d had for nearly two and a half years and I found myself alone, overwhelmed, devastated, and sinking under the waves even faster. I began to battle against self-talk, mainly centered around wishing I weren’t Autistic, believing that a neurology that didn’t come with such volatile emotions and such vulnerability to overwhelm would give me the perfect life that everyone — of any neurology — can, at times, yearn for in vain (for none of us get to have perfect lives. The secret is to make the best life we are able to and learn to love whatever life we do end up with. There’s no road map and only a portion of anything is ever really in our control.)

I have pulled out of the nosedive by returning to an old friend, meditation.

I used to meditate decades ago — so long ago that I can no longer remember if it did me any good. On the one hand, it seems it did, because I kept doing it for a long time. On the other hand, it seems it didn’t, because I stopped doing it at some point. Although that could have just been life interfering with self-discipline. Or maybe meditation made me feel so good that I forgot it was making me feel good and started thinking it must be a waste of time. I have no idea why I stopped, but I recently found myself stumbling across articles about meditation in a synchronicity that was hard to ignore.

The first thing that really caught my eye was an article about meditation and its effects on the amygdala. I had already been thinking about the amygdala a lot because it was pretty apparent that mine was over-active and over-stimulated. I had seen brain studies that indicated that many Autistics have very active amygdalas and even studies that suggested that we have more neural connections to our amygdala than non-autistic brains have.

The amygdala is a pair of neural regions deep inside the brain, in the temporal region (the sides of the brain, more or less beneath your temples.) They are complex and, like much of the brain, only partially understood. They appear to have a strong role in emotions and decision-making, among other things. While pleasant emotions do appear to correlate with amygdala activity, most studies focus on its role in stress emotions, anger, fear, anxiety, etc. If you do much reading about the brain and autism studies, you’re quite familiar with the amygdala already as it’s one of the favorite brain locations for neurology-based autism studies.

Fight-or-flight anxiety and panic are so familiar to me that I had come to believe anxiety was my normal state of being. I became unable to “see” the anxiety except during rare times when it lifted and I could see, by contrast, that I had been extremely tense. Venturing out among people was often too much to bear, generating feelings of being trapped or of venturing behind enemy lines. So when I saw a study that found indications of functional changes to the amygdala, apparently due to mindfulness mediation, I was immediately curious and interested.

I found studies that indicated that meditation can be effective in relieving panic and depression, that it can enhance cognitive abilities, and increase the density of grey matter in brain regions associated with emotional regulation and perspective taking. I found a paper, published in 2012, about using meditation, specifically mantra meditation, as a therapy for Autistic children age 3 to 14 years, that reported “relief of symptoms” that appear to be an effect of stress-reduction and increased emotional self-regulation.

Having seen these studies (and many others, too numerous to list here) indicating potential benefits of meditation, my next step was to read Meditation for Aspies: Everyday Techniques to Help People with Asperger Syndrome Take Control and Improve Their Lives, by Ulrike Domenika Bolls. Bolls’ writing style (originally in German and translated into English by Rowan Sewell) is very clear and easy to understand, although at times repetitive. If I did not already have past experience with meditation, I think I might have felt confused by her book as it explains the benefits of meditation, the ways that people with autism are especially well-suited to become meditators, the physical (and some mental) components of a wide variety of types of meditation, but never really gives a good sense of what meditation is, beyond “a practice that can help you.” In Bolls’ defense, meditation is very difficult to explain. It is the sort of thing that is almost impossible to understand without actually doing it yourself.

Bolls’ book is a good resource for learning about meditation and its benefits, but it will not teach you how to meditate. The author tells her readers to go find a teacher for that. I found that a little frustrating but I did not regret buying and reading the book. It provides a good overview and is especially helpful for describing the wide range of meditation styles that are available. By the time I finished Bolls’ book, I was pretty convinced that I needed to try meditation. I have often seen people refer to the Autistic brain/mind as being like a different operating system — there is nothing flawed or broken, but you can’t expect to run iOS software on a Windows machine or vice-versa. Within this analogy, meditation is like a disc optimization routine that defrags the hard drive and makes everything run more efficiently. Meditation can optimize any hard drive because it is a self-applied process, so our computer (self) already applies it within whatever operating system (individual neurological configuration) the system (person) happens to be running.

Since it had been so many years since I last meditated, I wanted more guidance than Bolls’ book provides. And since I have a very low income and a fear of getting involved with a group or teacher that might end up being pushy or even cult-like (I have experienced this in the past and am very careful about what sort of quasi-religious or new-age people and groups I get involved with because of it) I was pleased to find two free sources of non-intrusive guidance in mindfulness meditation, which turned out to be the meditation type I found myself most drawn to. The meditation I did in the past was mantra meditation. I cannot explain why I felt the urge to do something different this time. I chose, instead, a form of meditation that focuses on the breath. Very simple, very quiet, very peaceful. It can be done while sitting or while slowly walking and I have found that mindfulness breath meditation while laying down helps me to go to sleep more quickly and peacefully as well.

One source of guidance is a set of free recordings you can download from UCLA’s  Mindful Awareness Research Center. These are good recordings and well-produced, but I do not like them so much because the voice is a higher-pitched female voice (and there are even some bells in the recordings) and my nervous system does not respond well to higher-pitched sounds. I find it difficult to relax to the female voice and there are even points in the recording where the pitch and attack (a musical word for the quality of the start of a sound) of her voice causes me to startle and tense up. They are good recordings, though, and if you don’t have my sensory defensiveness against higher-pitched sounds, you may get great benefit from them.

The other recordings are almost perfect for me. Sam Harris has recorded two guided meditations and gives the files away for free on his website. (I feel I should give a warning about Sam Harris. He is more widely-known as an atheist political commentator and he has some political views that I find deeply disturbing. He is hawkish and has advocated torture and killing others for their beliefs. I avoid his political writing because I have gained so much benefit from his meditation teaching and I value him as a meditation resource. Too much exposure to his political views would make it impossible for me to use his voice as a meditation guide and I have so few resources at this point that I don’t want to lose one of the most valuable ones I have.)

I find Harris’ voice very soothing and relaxing and his guidance can bring me into a deeply meditative state very quickly. My goal is to continue using his guidance sometimes in my practice until I develop to a point where I am able to always meditate alone, without a sound track to help me. I already meditate much on my own, but still return to his recordings from time to time for assistance. In these early days, I appreciate the guidance as it helps keep me on track. If I had another recording that were equally effective for me, I would stop using Harris’ recordings since his political views are so repugnant to me. Still, I am grateful for what he has done to make meditation more accessible to others.

So . . . what has this experiment done for me so far?

I am definitely calmer. Before I began meditating, I cried every day. Sometimes I didn’t even know why I was crying. Now I cry infrequently and usually for obvious reasons, like a sad book or movie.

Little things that used to bug me don’t bother me any more. One example: I wear Vibram Fivefinger shoes (the “barefoot” shoe with separate pockets for each toe) and they get a LOT of attention. I wear them for my health (in regular shoes, I develop fasciitis and tendonitis so painful I can’t walk. In Vibrams, my feet stay pain-free) and not as a fashion statement or an attention-getter or conversation starter. It used to really bother me that I would carefully dress in beautiful clothes and all people wanted to talk about was my shoes. And the shoe conversation is always nearly word-for-word identical every time. It is so boring to leave the house and have the same conversation 10 times with strangers who only want to talk to me because my shoes are different.

It started to really annoy me. I felt like I was being treated like a shoe advertisement, not a human being. I hated that everything I did to be beautiful or get noticed would be ignored and my medical devices (because that’s all my shoes are to me — a choice that keeps my feet healthy and pain-free) were center stage. And because people don’t understand why I wear them, they get intrusive in rude ways that they might hesitate to do if I had crutches or a wheelchair instead of “interesting” shoes. (Yes, I know that people get rude and intrusive about crutches, canes, and wheelchairs, but sensitive people usually understand not to do that yet don’t really get it when it comes to my shoes.) And many of the routine comments people make are thoughtlessly rude even if my shoes were just a fashion statement.

But here’s the thing: for years I have felt irritated and put-upon about people’s reactions to my shoes. But after only a few days of daily meditation, I went out and got several comments about my shoes and it didn’t bother me at all. I felt totally calm, not irritated. It’s a small thing but it’s also a really huge thing.

I can tell that I’m looking at life more objectively than I was before. The sounds and smells and movements at the grocery store are still overwhelming to me, but I no longer feel so much like I am being personally attacked by them.

Meditation is not some kind of “autism miracle cure” by any stretch of the imagination, but it is clearly helping me cope with strong emotions and handle stress better. I am feeling less depressed, less anxious, less frustrated . . . and the space those unwanted feelings leave behind is giving me more capacity for clear thinking and compassion toward others.

So I will continue with the practice, as it seems to be doing me much good. And I wanted to write about it, in case it could help others. Thank you for reading and may you have peace.

ABA

This week, I watched a community implode. I’m not going to talk about that, though, because it was very painful to watch people I love being treated so badly. But a lot of the implosion centered around a topic I do want to talk about. That topic is ABA – Applied Behavior Analysis, a common type of therapy for Autistic children. I watched people fight around in circles, chasing their metaphorical tails. It will take some time and lots of words to unpack this topic, but I hope you will stick with me on this because it’s so important and there is a lot that needs to be understood here.

Here’s the argument in a nutshell. It gets longer, angrier, and much more detailed than this, but I am exhausted just from reading the fighting, so I’m boiling it all down to two statements. And both statements are correct.

Autistic adult: “ABA is abuse.”

Parent of Autistic child: “I’m not abusive and my child is benefitting greatly from ABA therapy.”

You read me right: both statements are correct. That is part of what I need to unpack today. I think the best place to start is with the fact that both people above are using the term “ABA”, but what they are actually talking about are usually two different things. First we need to define ABA.

Well, actually, first I want to put people at ease. Parents – it’s got to be painful to feel like a whole group of people are ganging up on you and telling you that you are abusing your child. You love your child. You want the best for your child. You are spending thousands of dollars out of pocket to try to give your child the best possible chance in life. You worry about your child. You feel like you never even knew what love was until your child came along. You are not abusing your child. And if something you are doing is harming your child, you want to know about it and stop it. It hurts to be told that you are abusive toward the child you love so much.

And my fellow Autistics – you grew up feeling picked apart. You were subjected to things that harmed you. You still have PTSD today from things that may have been done with your best interests at heart but were actually quite damaging. You don’t fit in to the world around you and the adults who were charged with your care when you were growing up were stumbling around in the dark when it came to trying to figure out how to raise a child like you were. It is triggering to see that so many of the things that hurt you when you were growing up are still being said and done to and about children who are so very much like you were when you were their age. You want to stop the cycle of pain and you want children to grow up happy, healthy, and loved. It frightens and angers you to see many of the “best practices” that Autistic children today live with.

And there is a good chance that the two of you — the Autistic adult and the parent of an Autistic child — are not even talking about the same thing when you say “ABA.” Major organizations (particularly Autism Speaks) have lobbied hard for Medicaid and insurance companies to cover ABA therapy for Autistic children. As a result, many therapists now call what they do “ABA,” even in cases where the actual therapy is very different from genuine ABA, in order to have their services covered by insurance. It’s similar to the philosophy of therapists I’ve known who don’t believe in diagnosing mental illness but put a name on their patients’ struggles anyway because many insurance policies only pay for therapy if the treatment is for a diagnosis listed in the DSM. That’s the main point that I wanted to make, but there’s still a lot to say on this topic.

If almost everything is being called “ABA” then what is actual ABA? And why do Autistic adults say it is abusive? What sort of warning signs should parents be watching for? What is harmful about certain practices? Those are a lot of questions to answer, but I will do my best. Bear in mind that I’m not a therapist — ABA or otherwise — and I’m not a parent. I’m one Autistic adult, one person coping with therapy-induced PTSD, one person exhausted by the all-out war I see every day between people like me and people who love people like me, one person who wants to see a better world for everyone (but, I admit, especially for Autistic people.)

ABA was developed by Dr. Ivar Lovaas. As a 1965 Life Magazine article explains, the core theory of ABA was that a therapist, “forcing a change in a child’s outward behavior” would, “effect an inward psychological change.” The article says, “Lovaas feels that by I) holding any mentally crippled child accountable for his behavior and 2) forcing him to act normal, he can push the child toward normality.”

Much has changed, but this core premise of Lovaas’ work remains solid. ABA’s core belief is that forty hours per week of therapy geared toward making a child externally appear as “normal” as possible will “fix the brokenness” inside that made the child behave that way. ABA believes in an extreme form of “fake it until you make it,” and because it is behaviorism at its most pure — that is, a psychological science that treats internal processes as irrelevant to function (Lovaas said, “you have to put out the fire first before you worry how it started”) — it treats behavior as meaningless and unwanted actions rather than as communication.

This approach is troubling for many reasons.

ABA strongly emphasizes the importance of intensive, saturated therapy and insists that it is crucial to get 40 hours a week of therapy for very young children. Think for a moment how exhausted you, a grown adult, are after 40 hours of work in a week and you will begin to understand why we get so concerned about putting a three-year-old child through such a grueling schedule. Being Autistic doesn’t give a three-year-old child superpowers of endurance. Forty hours a week of ABA is not just expensive, it is painfully exhausting. ABA maintains a schedule like this with the intention of breaking down a child’s resistance and will.

I understand that you are afraid for your child. Their future is unknown. You are worried about their ability to live a fulfilled life. You are worried about their ability to have self-supporting work and be taken care of after you pass on. And I understand that this fear, coupled with a deep desire to give your child the best you can give them, can lead you to accept the ABA attitude of “more is better.” But stop a moment and think about the capacity for sustained focus of the average three-year-old and consider what a therapy that tries to double (or more) that capacity is doing to a child. If you stress a child out or even traumatize them with extreme therapies, you are paradoxically increasing the chances of incapacitating PTSD in the child’s future. Yes, you want your child to develop as much as they are able to develop and you want them to enjoy their life and hopefully provide for themselves, but exhaustion and trauma are not going to aid those sorts of development.

Worse than the exhaustion of so many hours of therapy, though, is the heavy focus on making a child “indistinguishable from his peers.” The main goal of ABA is to make a child LOOK normal. This is insidious for a few reasons. first, it is the best way to get the parents to continue to co-operate with the therapists for many years. Of course you are going to be moved to tears if the therapist gets your child to look you in the eye or say “Mommy” to you or sit at the table and eat a meal without fidgeting or melting down. Of course you will feel like the therapist is making progress and healing your child. That is a very natural response. So you will see the progress and you will want to continue with ABA therapy and you will be very defensive when adults Autistics online suggest that what is happening in your home might be a bad thing. What was bad were fights every mealtime. What was bad was never hearing your child’s voice. What was bad were the judgmental or pitying stares you and your child got when you went out in public and people saw your child spinning around or flapping her hands or becoming so anxious you were forced to leave your groceries unpurchased and flee the store.

But if your child is getting classic ABA therapy, what you are seeing is an illusion. And what looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.

ABA therapists are trained to find out what your child loves the most and hold it ransom. Often, it’s food. If your therapist suggests withholding food as a form of behavioral therapy, run screaming. That is harmful. If your child’s therapist will not allow you to remain in the room during a session (they will usually tell you that your presence will be a distraction that will keep your child focused on you instead of on the therapy they need to be paying attention to) that is a big warning sign. If you are able to witness your child’s therapy sessions and your child is spending a lot of time crying or going limp or flopping on the floor or showing signs you recognize as indicators of anxiety or fear, beware the therapy. If the therapist insists on pushing forward with the therapy when your child is crying or going limp instead of giving your child recovery time, run screaming. Therapy that trades your child’s sense of safety in the present for a promise of future progress is exactly the sort of thing that Autistic adults mean when they talk about abusive therapy.

Therapy should make your child better, not traumatize them, possibly for many years, potentially for the rest of their life. A therapist might tell you that “a little crying” is a normal thing, but I was once an Autistic child and I can tell you that being pushed repeatedly to the point of tears with zero sense of personal power and knowing that the only way to get the repeated torment to end was to comply with everything that was asked of me, no matter how painful, no matter how uneasy it made me feel, no matter how unreasonable the request seemed, knowing that I had no way out of a repeat of the torment again and again for what felt like it would be the rest of my life was traumatizing to such a degree that I still carry emotional scars decades later. It doesn’t matter whether the perpetrator is a therapist, a teacher, a parent, or an age-peer: bullying is bullying.

In my opinion, the goal of therapy should be to help the child live a better, happier, more functional life. Taking away things like hand flapping or spinning is not done to help the child. It is done because the people around the child are uncomfortable with or embarrassed by those behaviors. But those are coping behaviors for the child. It is very important to question why a child engages in the behaviors they do. It is very wrong to seek to train away those behaviors without understanding that they are the child’s means of self-regulation. When considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important than forced eye contact. Trust is easy to shatter and painfully difficult to re-build. It is more important for a child to be comfortable and functional than to “look normal.”

Work on things like anxiety and sensory issues first. Work on getting better sleep (both you and your child). Things like eye contact can come later, much later, and only if your child is comfortable with them. There are work-arounds. Lots of people fake eye contact. Lots of people have good lives with minimal or no eye contact. But forcing a child to do something that is deeply painful and distressing for no reason other than to make them look more normal is not just unnecessary, it is cruel.

I live two blocks from a behavioral clinic and I frequently walk several blocks out of my way to avoid walking past it because of the kinds of things I have seen when walking past the clinic. Let me tell you about the last thing I saw there, the thing that made me decide that I would rather walk an extra half-mile than risk seeing more ABA therapy on the sidewalk in front of the clinic.

A mother and father came out of the clinic with a little girl, around 7 years old by my best guess. Mother said, “Janie (not the actual name), look at me.” Janie didn’t look at her mother. The mother said to the father, “you know what to do,” and the father took hold of Janie and turned her head toward mother, saying, “look at your mother, Janie.” Janie resisted, turning her head away and trying to pull out of her father’s hands.

Mother crouched down and Father lifted Janie’s whole body up, laying her across Mother’s knee, face up. “Look at your mother, Janie,” father said. “Look at me, Janie,” Mother said. Janie began to whimper. Her body was as stiff as a board. Father held her body firm and Mother took hold of Janie’s head, “look at me, Janie,” Mother said.

I was glued to the sidewalk. I didn’t want to see any more but I couldn’t look away, couldn’t walk away. Janie began to moan and thrash her body. Father’s hands held her body steady as she kicked and flailed. Mother’s hands held Janie’s head steady. Both kept urging Janie to look at her mother. Janie’s moans turned to screams but neither parent let her go.

Finally, Janie’s entire body went limp with defeat. She apparently made eye contact because Mother and Father began to lavish praise on her. “Good girl, Janie. Good eye contact. Good girl. Let’s get some ice cream now.” Janie’s limp body slid to the sidewalk where she lay, sobbing. Father picked her up and carried her to the car, the whole way praising her submission. “Good eye contact, Janie.”

a drawing of eyes looking away with the caption forced eye contact hinders human contact

(This image – a drawing of eyes looking away with the caption
“Forced eye contact hinders human contact” – is a sticker and is also
available as a light t-shirt or dark t-shirt in adult and children’s sizes.)

What did Janie learn that day? I’ll give you a hint: it was not that people are more trusting of those who make good eye contact. It was not that she will appear more normal and thus fit into society better if she makes good eye contact. It wasn’t even that Mom really loves it when Janie connects with her through the eyes like that.

Janie learned that adults can have whatever they want from her, even if it hurts and even if they have to hurt her to get it. Janie learned that her body does not belong to her and that she has to give others access to it at any time, for any reason, even if she wasn’t doing anything that could hurt herself or others. Janie learned that there is no point in resisting and that it is her job to let others do what they want with her body, no matter how uncomfortable it makes her.

You may think I’m exaggerating or making this out to be more extreme than it is, but stop for a moment and imagine years of this therapy. Forty hours a week of being told to touch her nose and make eye contact and have quiet hands and sit still. A hundred and sixty hours a month of being restrained and punished when she doesn’t want to touch her nose and being given candy and praise when she does touch her nose for the 90,000th time. Nearly two thousand hours a year of being explicitly taught that she does not own her body and she does not have the right to move it in ways that feel comfortable and safe to her. How many years will she be in therapy? How many years will she be taught to be a good girl? To touch her nose on command? To make eye contact on demand? Graduating to hugs, she will be taught that she is required to hug any adult who wants a hug from her. She will be punished when she does not hug and praised and fed when she does.

And who will protect her from the predator who wants to hug her? Who will teach her that she is only required to yield her bodily autonomy for her parents and therapists but not for strangers? What if the predator turns out to be one of her therapists or parents? How will she resist abuse when she has had so many hours of training in submission? Therapy is an investment in the future, but ABA therapy is creating a future for Janie of being the world’s doormat. Is that the future Janie’s parents want for her?

If your child’s therapist believes it is more important for your child to comply with every command than to have any control at all over his or her body, run screaming. And don’t forget that a layer of training does not change the underlying neurology. ABA uses the same methods and theories as dog training and if I train my dog to shake hands, it doesn’t make him more human. It just makes him a dog who can shake hands. Similarly, if you train an Autistic to make eye contact and not flap their hands and say “I love you, too” and stay on task, it just makes them into an Autistic who can fake being not-autistic with some relative measure of success. Underneath the performance is still an Autistic brain and an Autistic nervous system and it is very important to remember that. Being trained to hide any reaction to painful noises, smells, lights, and feelings doesn’t make the pain go away. Imagine years of living with pain that you have been trained to hide. How long would it last before you broke down? Some Autistics last an amazingly long time before they break down and burn out.

And intensive ABA therapy will also teach a child that there is something fundamentally wrong and unacceptable about who they are. Not only is that child trained to look normal, they are trained to hate who they are inside. They are trained to hate who they are and hide who they are. They will work very hard to hide who they are, because they have learned to hate who they are. And as a result, they will push themselves to the brink of destruction. And when they finally crumble from years of hiding their sensory pain and years of performing their social scripts and blaming themselves every time a script doesn’t carry them successfully through a social situation, they will be angry at themselves and blame themselves for their nervous breakdown and autistic burn-out.

All those years of ABA therapy will have taught them that they are fundamentally wrong and broken; that they are required to do everything authority demands of them (whether it’s right or wrong for them); that they are always the one at fault when anything social goes wrong; that they get love, praise, and their basic survival needs met so long as they can hide any trace of autism from others; that what they want doesn’t matter.

Now you know what to watch for. Your child’s therapist may use the term “ABA” in order to get paid, but they might not be doing these harmful, degrading, abusive things to your child at all. If your child’s therapist is respecting your child, not trying to break down the child’s sense of self and body-ownership, treating behavior as communication rather than pointless motions that need to be trained away, valuing speech but not at the expense of communication, giving your child breaks to recover and not over-taxing their limited focusing abilities . . . then they can call their therapy anything they want to, but it is not ABA. (And hold on to that therapist! They are golden!)

And I hope that the next time you hear an Autistic adult say that ABA is abuse, you are compassionate. Remember the suffering so many of us endured. Know that we say those things because we love your children and want to help them. We do not say them because we hate you and want to call you abusers. We don’t hate you at all and we want to help you. Sometimes we are clumsy in how we go about it, because, well, we are Autistic and communication difficulties are part of that package. But know that when we attack ABA, we are not intending to attack you. We want your child to sleep through the night and laugh with joy and become toilet trained (on whatever schedule their bodies can handle — don’t forget that we tend to be late bloomers), and have a healthy, happy, productive, love-filled life.

We want you to rejoice in parenting and connect with your children on a deep and meaningful level. When an Autistic adult says “ABA is abuse,” you might be tempted to hear, “you are abusing your child.” But that is not what we are saying. Next time you hear an Autistic adult say “ABA is abuse,” please hear those words as, “I love you and your child. Be careful! There are unscrupulous people out there who will try to convert the fear you feel for your child’s future into money in their pocket at the cost of your child’s well-being.”

And if you are a therapist and you are upset when we say “ABA is abuse”, know that we are not talking about you . . . unless you are using shock punishments or making children endure long hours of arduous therapy beyond their ability to cope or teaching children that they do not have the right to say who can have access to intimacy with their body or not (and forced eye contact is a particularly nasty violation of a person’s control over their bodily intimacy.) If you are not the kind of therapist who we are talking about when we talk about the harm of therapy, then we are not talking about you! Thank you for being one of the good guys. We need more like you. Teach others what you know. Spread the love and help change the world, please!

Thank you for reading all of this. I know it was a lot of words, but this is such an important topic. The children are the future and I don’t have words to explain how painful it is when I see Autistic adults being verbally bullied and abused because they are trying to help the children by helping parents to understand more about the lived experience of autism and more about the kinds of things that can be very harmful to Autistic lives. I had over a decade of therapy in my childhood and much of it was not good therapy and I am explicitly damaged because of it. When I say ABA is abuse — when we Autistic adults say ABA is abuse — we are speaking from a collective wisdom gained through painful experiences that have left lasting scars on us. We don’t want anyone else to have to go through the pain we have gone through. Please respect where we are coming from and please do not add to the trauma by attacking us for trying to help others. Thank you.

=========

Edited to add: if you would like to see some video examples of helpful vs. harmful therapies, check out this blog post I made a month later on that topic:

Helpful vs. Harmful Therapies: What Do They Look Like?

Not being able to speak is not the same as not having anything to say

The title of this post is a famous saying, many of you will already be familiar with. The saying comes from an Australian educator, Rosemary Crossley, the developer of Facilitated Communication Training, or FC for short.  FC is a method of helping people with difficulty in planning movements, such as those with autism or cerebral palsy, to gain sufficient control of their bodies to be able to point out letters and spell words.

FC is controversial, but I really wish it weren’t. There are some small studies that claim to find that Autistics using FC are not really communicating but being used, like a puppet, by the facilitator. I have several friends who use FC to communicate and I have zero doubt that I am really communicating with my friend. I do not believe that a facilitator can manipulate anyone that skillfully using the methods of FC. I was pleased to see a much larger study showing that FC is valid communication on the part of the person rather than their facilitator because that is something I already knew, without needing a study, but it’s reassuring when science can back up our observations. FC can be difficult to test because there are aspects of the Autistic neurology that can make some of us not perform well on standard tests, but many of the participants in the study linked above were shown a word while their facilitator was out of the room and then were able to type that word when the facilitator returned with no knowledge of what word was going to be typed.

FC came to America and has helped many Autistics be able to communicate with others in a way that everyone could understand. This is a great gift and should be supported! I sometimes feel that therapists place too much emphasis on acquiring speech and almost no emphasis on acquiring means of communication. To my mind, the most crucial first thing to do when trying to help an Autistic person is to open up lines of communication. Some of us speak late and some never speak or never acquire speech that is good for communication purposes. Don’t waste one minute! Open up communication first! It can be sign language, independent typing, pointing to letters on a card or board, facilitated communication, graphic systems like PECS or Bliss, the Rapid Prompting Method (RPM), or whatever works. That’s the important thing — use what works! Communication is more important than speech. The connection of communication is worth using any method that works. In the case of autism, we have a developmental delay that causes us to hit milestones later than our age peers. Speaking may come later (or not at all) but the need for communication begins at birth. Not being able to speak is not the same as not having anything to say!

A friend came to me yesterday and said that she had a t-shirt with that quote on it and needed to get a replacement because it was starting to develop holes and show other signs of wear and age. I Googled and found another t-shirt but she didn’t want to buy from the seller for ethical reasons (which I support) so I made some designs for her. I made five designs that can be put on adult or children’s t-shirts. A couple of them are also available as stickers or greeting cards. I am sharing them here, in case someone else wants a t-shirt with this quote as well. I love this quote because it challenges assumptions and it reminds us all that ideas and communication are the important part. Using speech to accomplish these goals is great if it’s attainable. But if a person is not able to speak, we can’t just dismiss them as not having anything worth communicating!

 

notspeak01

notspeak02

a sunflower with the quote superimposed on it

Quote superimposed on a photo of a joyful child wearing a tie-dye t-shirt

the quote in rainbow text on a dark background

#istandwithconner

Unstrange Mind in her Cow Hat

A photo of a smiling female in glasses, an olive green shirt, and a brown plush cow hat. Above the image, are the words I am Unstrange Mind. I love my cow hat! And … Below the image are the words in all capital letters I stand with Conner!

Today I read a post from A Diary of A Mom about Conner and his Mickey Mouse ears. Read her post to see what a wonderful person Conner is.

Conner loves his Mickey Mouse ears. His ears and his camera help him feel comfortable in crowds. And most people love Conner’s Mickey Mouse ears. But when he was at a conference, someone approached him and told Conner he should “lose the ears” so he could blend in better with others. Conner stood up for himself and said he loves his ears, they are a part of who he is, and they are no different from someone wearing their favorite ball cap to feel comfortable.

I stand with Conner!

I have a favorite hat, too, that makes me feel happy and comfortable. It is a big plush cow and it is warm and comfy and soothing and adorable and the cow’s face helps to shield my eyes from too bright light. My cow hat makes people smile and feel happy. My cow hat has a friendly cow face. I think my cow hat puts most people at ease, but a few people don’t like the cow hat and wish I wouldn’t wear it.

My cow hat is part of who I am, just like Conner’s Mickey Mouse ears are part of who he is. Lydia from Autistic Speaks started a campaign for us all to wear our Mickey Mouse ears (or, if you don’t have Mickey Mouse ears, a hat that makes you feel special and happy) and photograph ourselves in our hat and support Conner. Conner stood up for himself and his right to wear his hat and I stand proudly with Conner, wearing mine!

I hope you stand with Conner, too!

(And do visit Conner’s page!)

 

Deeper Levels of Stigma

Robin Williams and Michael J. FoxSince you’re on the internet, you’ve already heard the latest news — Robin Williams’ wife announced that he had been diagnosed with Parkinson’s Disease. He hadn’t wanted to announce it publically yet. He had not returned to drug or alcohol use. He was deeply depressed because of the Parkinson’s diagnosis.

The responses I saw, just in the first hour after learning this new information, revealed to me that there is a deeper level of stigma than mental illness. When all we knew was that Robin Williams had succeeded at suicide and that he had a history of drug and alcohol abuse and that he had spoken openly about depression and mania, there was an outpouring of compassion about the pain of depression. A few people aside, people were talking with compassion about depression. People were sharing phone numbers of hotlines. People were telling one another to be there for their friends, to listen, to care. People with mental illnesses wrote messages of solidarity and I even saw many folks seeing this climate of compassion and taking the strength and courage from it to come out of the closet about their own mental illness.

But now that we know that Robin Williams had Parkinson’s, what is the first thing I see? “It’s still tragic, but it’s more like a rational choice now.” and, “I feel as if, now came out he had Parkinson’s disease, we can agree he had a reason to choose to die.” and “If laws for euthanasia where better he could have chosen to die among his loved ones, family and friends and not alone and cruel.”

I’m happy to say that others joined the conversation and spoke about why those kinds of attitudes are so chilling to disabled people. But still, the immediate reactions of able-bodied people shocked me. And it showed me that we still have so much stigma to dig ourselves out from under.

Earlier this week, we were having conversations about the very real and very harmful stigma of mental illness. And we were seeing many strong and heartening responses about depression and suicide and reaching out to one another. Even Matt Walsh, who had been skewered for a blog post titled “Robin Williams Didn’t Die From a Disease, He Died From His Choice”, was trying to say that depression-fueled suicide shouldn’t happen because we should be reaching out to one another, loving one another, helping one another through our pain. He clarified his position in a follow-up post titled “Depression Isn’t a Choice But Suicide Is“. Although he still referred to depression as a “demon,” a position that Maia Szalavitz points out is stigmatizing in itself: “When even today’s headlines about addiction and mental illness refer to struggles with “demons,” you know that stigma remains strong.” (from How Much Did the Stigma of Mental Illness Harm Robin Williams?)

Going forward, we need to duplicate the sensitive conversations we were having about the stigma of mental illness, but this time, we need to talk about the stigma of disability. The instinctual responses I saw from people when they learned that Robin Williams had been depressed about being diagnosed with Parkinson’s are part of a “better off dead” stigma that disabled people encounter from others every day. In the Autistic community, we see it played out graphically, month after month, as parents and other caregivers kill Autistic children and adults and onlookers talk about the great difficulty of taking care of Autistic people, the cost, the suffering, the quality of life. So much sympathy goes to the parents who had been “saddled with such a burden” and so little sympathy, outside of the community of Autistics and our allies, goes to the disabled victim.

When the first response to learning that Robin Williams had Parkinson’s is that his suicide makes sense now, there is something very wrong. One person said, “Couldn’t he have called Michael J. Fox?? He died from fear of disability.” And I wonder if Fox will tell us that he did speak with Williams. Or if he will reveal that he had no idea about Williams’ diagnosis. I don’t know if Fox could have helped Williams come to terms with the diagnosis or not, but Fox has been pretty open about his own life and he’s surely someone I would want to have in my corner while I grappled with my life choices in the face of a Parkinson’s diagnosis.

Parkinson’s is a difficult disease to live with. Then again, so is depression, but our culture’s instinctual response to depression was to remind people that we should fight against it, not to say that it makes sense to commit suicide because who would want to live with the pain of depression? We must overcome our cultural attitude that a disabled life is a life not worth living. We must learn enough about the lives and thoughts of disabled people that we no longer have a knee jerk reaction of approval to suicide committed to avoid a disabling disease. And we must work to build a society that accommodates and includes disabled people, welcoming disabled people into the community of “us” rather than relegating disabled people to a pitied and feared “them” that “we can all agree” would have a perfectly valid reason to kill themselves.

Not only does this attitude devalue the lives of disabled people, judge their worthiness, “other” them, but it is dangerous. It is the beginning of a slippery slope. If we say that Robin Williams’ suicide is now understandable, acceptable, rational, reasonable, supportable . . . we begin to erode the right of disabled people to live our lives. If we are too much trouble, If we cost too much, if we demand too many accommodations, are we forfeiting our right to exist? If the world thinks that we would be better off dead, how willing will people be to help us live a good, satisfying, fulfilling life? Who wants to spend resources on people who “shouldn’t be here”?

So if you hear about Robin Williams’ Parkinson’s diagnosis and you are tempted to think it makes his suicide better, more rational, or even okay, stop to think about what attitude you are carrying toward disability and why you are shocked at a suicide due to depression but only sad about a suicide due to disability.

 

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