It’s taken me awhile to put this post together. I’ve been aware of my need for support for some time, but I hadn’t been sure exactly how to ask for it, or what it might consist of. This post is an attempt to explore the question.
As many of you know, engaging the whole issue of autism and empathy can be very painful. I see the unexamined assumptions. I see the rampant generalizing. I feel the impact of the dehumanizing words. I feel the anger and sadness as I face how deeply entrenched the stereotypes are. And I see the potential for harm.
Many people have told me that they can hardly bear to look at the sources that I analyze and write about in detail. I understand why you feel that way, believe me. It is hard, hard work. As I prepare to enter more deeply into the work in my graduate program, I am feeling more and more apprehensive about delving into the research and critiquing it. My apprehension has been looming very large lately, and I’ve been trying to understand why it’s there. What I’ve realized is that my apprehension is not only about the content of what I’ll be reading, but also about feeling that I am fighting this fight on my own.
Don’t get me wrong: I know, intellectually, that I am not alone. I know how many people support this work. I know how many people share my sadness and anger. I know how many people value what I’m doing. I deeply appreciate all the many supportive comments and messages I’ve received. Every single one of them has great meaning for me.
But what I’m lacking is a support network — a place where I can go and get support when I’m feeling burdened, or upset, or just plain depressed at what I’m seeing. I’ve been thinking about what that might look like, and I’ve come up with two ideas.
First, with the full support of my professors, I’ve decided to immerse myself in disability theory and disability studies before reading any more research into autism and empathy, theory of mind, and other related topics. I have to put together a working framework with which to analyze what I’m looking at, and I need to feel myself part of a larger community of people who have grappled with all the same issues I’m grappling with — issues of dehumanization, exclusion, and power. When it comes down to it, although the details differ, all disabled people who write about disability issues have to struggle with a social context that has historically sought to exclude them. As I’ve begun reading the work of disability theorists and writers, I’ve begun to see patterns emerging that give me new ways of looking at own work. I’m hoping that if I immerse myself enough, I’ll emerge with a framework that will allow me to understand the larger social and historical forces at work, and that this framework will provide a structure into which I can channel my sadness, my anger, my frustration, and my passion for change.
Second — and this is where you all come in — I want to set up a network of people I can email when I’m feeling up against it. Sometimes, I’ll be able to channel my feelings into a theoretical framework, but at other times, I will just need to process my feelings and get support. I’ve got some friends in town who help me do that, but I want to feel myself part of a much larger community of support, because this work is so much bigger than just a few of us.
I’m aware that I’m doing a lot of heavy lifting on these issues, and by saying that, I’m not complaining about it. I chose to do this work, and it’s my passion, and I don’t feel forced into it by anyone else’s expectations but my own. But heavy lifting is heavy lifting, and at times, I need help carrying the burden. I think it’s wise to ask for that support at the outset, because if I don’t, I risk running on fumes at some point, and that’s not a place I want to go. I want to continue to be filled with strength and energy and power for this work, not arrive at a place in which my resources for it are depleted.
Fighting dehumanization is too important. I am in this fight for the long haul, and I want it to remain a sustainable one. To do that, I need to reach out. So, if you’d be interested in being on a list of people I can email for support when the going gets tough, please leave a comment below or send me an email. And by all means, feel free to drop me a note if you like what I’m doing and it’s meaningful to you. Those kinds of messages mean more to me than any words can say.
© 2011 by Rachel Cohen-Rottenberg
If there’s anything at all that I can do, Rachel, please let me know!!!!!! <3
Awesome!
Hi Rachel,
I don’t know if I’ll be much help but I’m always willing to listen. The things that you’re doing a amazing and courageous and I really don’t know how you find the stamina to do them.
I try to read a lot of articles but I sometimes wonder how much it’s about research and facts versus feelings.
For example, rather than wade through tons of material on “the reasons why people with Autism can’t feel empathy”, I felt it better to say;
1. I have autism
2. What is empathy?
3. Do I have empathy?
Sometimes the answers that come from within are better than a body of knowledge based on a false premise.
Nevertheless, I have a great deal of respect for the amazing amount of hard work you put into your research and if I can help, then it’s unreservedly offered.
Thanks, Gavin. I’ve appreciated your support for a long time. You were one of my earliest readers.
Yes, definitely.
Thank you, Grayson!
Sure! Thank you very much for your work!
Thanks, Simone. It’s so great to have connected with you on FB.
Happy to help in any way I can!
Much appreciated, Steve!
I’m mainly trying to reduce activities but I think this stuff is extremely worth doing. So you can count me in so long as I’m functioning ok. Thanks for doing the heavy work.
Dinah, please help only as you are able. I want everyone to take care of themselves in this process.
Put me on your list.
Done! Thanks.
Rachel, if I can help, I’d be glad to. You’ve been so supportive; it’s the least I could do.
Thank you, Emily. I appreciate having you in my corner.
Hi Rachel,
I don’t know how to email you? Can you give me details?
thanks
Julie, you can send me an email at rachel (at) journeyswithautism (dot) com. Many thanks!
Rachel,
I’m happy to be one you can turn to for support, as often I feel just like you. Except, I do not have nearly as many supporters as you do for your blog and page! I myself am seeking support and I guess, valiudation for all I have been through. You have my email address as I have correspionded with you and have submitted to you a second manuscrpit for which I am waiting to hear from you. Thank you for all you do and I hope to hear from you soon!
Thanks, Lisa.
Have you got something else to immerse yourself in for a while when you’re feeling ‘burnt out’ with it all?
I admire your courage in questioning the status quo.
It does all seem so much bigger than us though.
I’ve read about arguments about whether the Asperger name should be kept, about people that supposedly fake autism (for profit/attention?), disagreements about what empathy is etc.
A lot of it’s so much in a grey area where labels are applied by humans where they see fit. Labels change over time.
I hear you, I find your ideas interesting. I don’t know how much practical use I can be though.
I’m taking a break from my blogs to immerse myself in other activities. I hope my insights in my blogs have been useful to some people. I need to focus on other aspects of my life for my own sanity and survival.
Xanthe, yes, I immerse myself in many other things to feed my soul. Thank for the reminder of how important it is to keep doing so.
I hear your struggle.
It helps me to go back to my core beliefs.
“The worth of a soul is great in the eyes of God.”
While I fight for my son’s place in this world, my thoughts come back to this overarching belief. It comforts me to know that God does not discriminate and it makes sense that neither should we. With this as a basis, I hope to inspire that same feeling of worth in my son. Regardless of what battles of injustice we fight this simple belief remains unchanged.
I applaud the work you do in relation to autism and empathy. There are many myths to dispel. However, I would not want to see you do so at the expense of your own well-being.
Please consider me a sounding board for you over any issue. I would be more than happy to help.
You are not alone. x
Your core belief is just beautiful, Tara. I am holding it in my mind and heart. I have been finding a lot of strength in my spiritual practice and my connection to the Divine. It gives me a sense of power and perspective.
Hi Rachel,
I would be happy to assist in any way that I am able. I did my M.Ed. in Supporting Educators in Understanding the Experience of Students with Autism. I am mom to an almost 13-year-old boy in the spectrum and partner to an amazing aspie husband. I am also a Special Education teacher.
So anyways… that is just a little background… but what really impresses me is the planning you are putting into creating a support system before a crisis. What a wonderful way to honour yourself and the needs you may have on your journey. I admire that! Asking for help is certainly hard for some of us – and the fact that you have asked makes me just want to say, “Yes! I am there!”
Leah
Thank you for your support, Leah. It is always very difficult for me to ask for support, as it is for many people, and I’m very glad that I reached out.
Hiya Rachel,
I did a huge research project on murder and violence, and another one on people who were kicked out of their families and their religion because they were GLBT. Right now, I’m getting started on a massive project about children who were raised in cults and escaped, so I think I know what you mean when you say that you get upset and depressed (among other emotions). Humans can be the most horrific things sometimes.
I can support you with information from sociology, anthropology, and social psychology — all of which can help create an overview for the brutality and prejudice humans are prone to. I found that it helped to read scholars who had looked at the darkness and created theory about it.
There’s a very good book — and it’s short! — about the treatment of “the other,” including the handicapped and the stigmatized. It’s called “Stigma: Notes on the Management of Spoiled Identity” by Erving Goffman, and it’s awesome. Here’s a quick overview of the theory: http://en.wikipedia.org/wiki/Stigma_%28sociological_theory%29#Goffman.27s_theory
I hope that helps! Let me know if you need someone to commiserate with about 1) The painful material you’re uncovering; and 2) The ridiculous hard work of research.
Thank you, Karla. I have read Goffman’s Stigma, and will likely re-read it for my coursework.
It sounds like you’ve done a lot of work on some very difficult topics, so you understand the challenge. I’m glad to hear that it helped you to look at theory by people who had come through the darkness themselves. That is exactly what I’m doing, and so far, it’s both empowering and comforting to find others who have walked this path before me.
I’d be honored to be added to your support list, Rachel. My own academic work already involves the same material you’re delving into – disability theory, critical psychology, etc. – so we can share resources and point each other toward useful bits of theoretical framework.
I’d love that, Nick. Thank you so much.
Rachel, please add me to your list!
Will do, my friend!
I find your work fascinating, and, as the mother of a girl on the spectrum who CLEARLY is an empathetic child, it fills me with hope. Hope that one day the world will see in her what I see every day – that the world will value her as is…
Please, count me in as part of your support network. I will cheer you on as one of my own. I will listen, and sometimes even offer advice – and like with any mother’s, not all of it may be wanted but it will all come from a place of love. And, when necessary, I will fight along with you, or on your behalf. because what you are doing is changing the world. And it NEEDS to be changed!
Wow, Dana, thank you so much. Great to meet you!
Count me in Rachel…I feel very passionately about these issues and you shouldn’t be carrying the burden all alone. You can email me ANYTIME you need to vent, need an opinion or need emotional support.
Thank you so much, fellow empath.
P.S. Part of the captcha code for this comment is “consolatory.”
I’ll give you any help I can. I’ve gained a wider understanding of autism through your blog and others – it’s helped me to feel that I’m not on my own with it – and I think your research is valuable because you have an insider’s perspective.
So glad that my blog has been a help to you. Thank you for your support.
I’m an autie and a doctor. I know there are a lot of people out there who have been badly served by the medical profession. If you need to vent about this stuff to someone who straddles that great divide, who can reassure you that there are some of us that are trying to listen and slowly learning how to advocate, please email me.
I definitely will. Thank you!
Count me in too
You do good work, might not understand all of it. But at least someone is trying, and I’ll listen best I can.
I so much appreciate your willingness to help, Jackie. Thank you.
i’ll look forward to being a part of your support community. i dropped you a note on fb.
Selene, thank you for the FB note, and for your support.
Hi Rachel! I’d be happy to help in whatever way I can, even if only with a listening ear. My 5 yo was recently diagnosed with aspergers. For a while I dismissed the possibility of autism simply because of his enormous empathy – like other people I know, I made the incorrect assumption that people on the autism spectrum lack empathy. As soon as he received his diagnosis I knew something was wrong with that idea, so I googled autism and empathy and found your blog. What amazing work you’ve done to open the eyes of people like me! I share your blog with everyone I know. Thank you!
Jill, I’m overjoyed that my work has had such meaning for you! Thank you for becoming part of my support network, and for spreading the word.
Write me anytime!
Not long ago, I was mid-meltdown, when I realized, “hey wait, you know who would understand this problem exactly?!” And I e-mailed thoughty autie, and it was better. It’s still sinking in that I now have girl friends who I can b*tch to about this stuff, and know they’ll understand. It’s really nice.
It’s true, chavisory. Support is often only an email away. I’m so glad you’re willing to be part of my support network. Many thanks!
This is a great idea Rachel.
I am in no position to offer practical support at this point in time, but want you to know my best wishes are with you during the journey ahead.
Thanks, Sharon.
Rachel – I enjoy reading your blog and your comments elsewhere. I don’t know what kind of support I could be, except that I can send “strong thoughts” – what my 80 year old mentor asks for when things are hard. Some people might call them prayers, I guess. I’m hoping for good things for you as you study and research. It is hard work but worthwhile.
Dixie
“Strong thoughts” are sometimes just what’s needed. Thank you.
You have been invaluable. I love to hear what you have to say, on your blog, through comments, and via email. If there’s anything I can offer, you got it!
I appreciate your support, Melissa. I’ve enjoyed our email exchanges and I’ll look forward to more.
Rachel, I don’t know how much help I could be as a sounding board, but I think you are really onto something in your approach (in placing yourself within the context of the whole disability movement). If you think about the struggle to end slavery, the fight to have women accepted as persons under the law, etc., it must have seemed to the first leaders in these movements as though the obstacles were insurmountable, so please don’t give up. I am reminded of a quote, “Nothing is so powerful as an idea whose time has come.” I hope you live to see the fruits of your work, but you can see from the sheer number of comments your request generated that a lot of people are getting light from your candle.
Elizabeth, I am so moved by your words. Thank you.
I am here as a support for you Rachel. I admire your courage, energy and genuine devotion.
Thanks, Lori. Now, as always, I very much appreciate your support.
I would be honored and benefited if given the opportunity to pour myself a coffee and chat with you, via email or telephone! I understand how hard it is to reach out for support, especially as strong women still discovering what that means. I would adore the opportunity to thank you for your support. Reading the eclectic pieces on your autism and empathy website has truly been a gift. One that guided me to a place where I felt comfortable enough to share my own story, surprising myself with still more realizations and concrete learning’s.
I know that when your work involves such soul searching and uncovering of truths the feeling of being alone can be all encompassing. When I feel that way I go dancing until life (and sweat!) has returned to every extremity. That’s not the answer for everyone, but there’s always an answer!
Thank you for all you do. Thank you for inviting us to do too. And thank you for reaching out and reminding me that asking from others is also part of changing the world!
Tsara, what a wonderful insight — that asking for support from others is part of changing the world. Your words a great gift to me, as they help me to see that reaching out is an integral part of the work I’m doing. Thank you.
I recently discovered your blog while while researching about my own Autism. I’m an Aspie, who like others, is struggling to make my way through the world. Thanks for all your insight and observations. Keep it up! I’d be glad to offer any support I can.
Many thanks, ictus75. I’m glad you stumbled upon this community!
Rachel–I’ve been remiss in coming to visit you and for some reason today I felt compelled to do so. And then I read your post. Please let me know if there is anything you need–an ear, a shoulder or just plain silence. You do amazing work and with work comes the necessity to recharge. Please feel free to use me in that regard.
So great to see you here again, Lizbeth! And thanks. I will add you to my ever-growing list of people to call on.
Totally up for being there to help you out, Rachel. We need people like you if we’re ever going to make any lasting change (and you are much more articulate than I am). So feel free to toss a line over this way if you need to.
Thank you so much, Jayn.
I’m jumping in late, but you know I’m always there for you. I mean it.
Thank you, friend.
Count me in on your list. The kind of research and analysis is outside my areas of expertise, but I can certainly support your struggles to write about what you’re learning and process the emotions with enough sensitivity to do the subject justice but also enough distance to keep yourself intact. It’s a difficult challenge and you’re wise to ask for help, and I’m happy to help you however I can that meets your needs.
Thank you so much, Stephanie.
I am more than happy to help however I can. Your work is amazing and I know how hard it is to ask for help. Kudos for everything you do. <3
Devon, I appreciate your support so much. I always enjoy your writing and your perspective on raising an autistic daughter.
Hi Rachel, It think it is wise to start exactly as you have, by forming a support network to carry you through the bad times, cheer when you are on a roll and bounce ideas off of on a regular basis. I too am a scientist and when one goes against the current dogma they risk . . .everything. When you know, absolutely know you are right and can not be convinced otherwise then the path, regardless of how rocky, is well worth the journey. I have been convinced of empathy in autism for over 20 years – watched it happen repeatedly in my son again and again. This is a child they wanted to institutionalize. A child they told me would never be able to do much of anything. He has only autism – no other disability and that’s important because there is nothing else anyone could claim his empathy is a product of. He is moderate – severe (the severe was only declined in full because he did not harm himself). He is amazing! Intelligent, polite, empathetic, gifted as an artist and happy – 99% of the time happy. I support you – totally. If you need to reach out I am here. Just like you, I am in it for the long hall. I will continue to publish stories from his past and present to help other parents see that empathy is a part of who they are and it should never be overlooked. You are doing a great job! Talk to you soon. – Liz
I appreciate the support, Liz. Thank you.
I know I’m a bit late to comment, but I’m absolutely here if you need me. I think it’s wonderful that you’re reaching out this way.
Thanks, Emily. It’s never too late to offer support, and it’s always much appreciated.