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From Inside the Puzzle: Raising a Child with Autism Blog

Autism Acceptance & Mindful Blogging

Published April 10, 2012 12:22 PM by Devon Alley

There has been a great deal of conversation in the autism online community lately about the concept of parents using the phrase "I hate autism," and how potentially damaging such a phrase may be to a child with autism. The core of the debate has been explored and discussed at length in posts and the comments to such posts as Brenda Rothman's You Can't Hate Autism and Expect Acceptance and Lynne Soraya's Stigma And The "Othering" Of Autism. It is, in truth, a very complicated and highly emotionally-charged issue, and for good reason -- many parents feel as if they are being attacked because they are angry at something they perceive is the cause of their children's suffering, and many autistic adults are fighting against what they see is a language and rhetoric of hate that devalues autistic individuals. Like most debates, there are no easy answers, and it is vitally important that we continue engaging in this conversation, that each side continues to attempt to understand the other, and to present their own perspectives in a mindful and compassionate manner.

One of the things I noticed in the comments and conversation threads I followed was that many parents explained that they would never say "I hate autism" directly to their child or within hearing of their child, but that they needed a place to vent and express their emotions, and that this place was their blog. Obviously, as a writer, and as someone who has consistently been writing for an online audience since 1997, I respect the need to share ideas, feelings, experiences, and emotions with others, and I know from first-hand experience how therapeutic and healing a blog community can be, especially when you're struggling with difficult life events. However, I've also made many, many mistakes in my history of keeping an online journal -- and those mistakes have often involved offending or hurting others. As such, I thought I might share some of the lessons I have learned about writing online over the years -- and then discuss how they may relate to the "I hate autism" debate.

When you publish something online, it is public. Many times, I've held by the belief that my journal is my journal -- as such, I should be allowed to publish whatever I want in it. That is certainly true, up to a point. The issue is that the Internet is public space. Unless I have my rants & rages locked away securely in a "friends only" area, I am submitting my ideas and thoughts to public discourse and scrutiny, and as such I must be responsible and accountable for every word I publish. We are blessed in our country with freedom of speech, which means that we do have the right to express anything we wish in a public forum. However, I have learned the importance of writing mindfully and being considerate of friends, readers, relatives, enemies, and alternate opinions when I post a public entry.

In the early days of my online writing career, I was eighteen years old, writing thinly-veiled angst-ridden expressions of hurt and rage about my relationship at the time, and about all of the people who were involved in that situation. I learned a lot from those mistakes -- from the people I hurt, from the words I spoke in anger and later regretted. And please, do not misunderstand me. It was absolutely vital that I expressed my rage, anger, and pain when I felt it. Now, however, I write those thoughts and feelings in private, paper journals, or share them in friends-locked areas on the Internet, or talk to my therapist about them. While I've never personally felt anger about autism, or felt the need to express hate at how autism caused my daughter to struggle so much with many things that came easy to other children, I imagine if I did, those would be expressions and feelings best written down and communicated in these more private venues -- specifically because I am aware and mindful of an entire community of people who would be offended if I did share such sentiments in a public setting, and more specifically because one day soon my own daughter is going to be a part of that very community.

When you publish something online, it is forever. It is easy for me to think of the Internet as a very ephemeral place. I tweet, I pin, I comment, and I tend to think all of these things disappear or erode with time. And anyway, there's so much available on the Internet, how does what I say in my own little blog even really matter? And, eventually, I'll just delete everything on my website and start over again, so it really doesn't have any staying power at all, right?

There are many different services that save and archive information from the web. Most notably is The Internet Archive's Wayback Machine. You can still see snapshots of my old website from 2001-2008, even though it's been out of commission for years, now. To make matters worse, my highly embarrassing, automatically-midi-playing-2-MB-imagemap website is still available from when I first published a website at college. As much as I'd like to pretend I was never that ridiculous in a public forum -- well, I obviously was. And despite the fact I haven't even visited the campus of MTSU in over a decade, my initial words and ideas are still relatively easy to reference in review for anyone who wants to do the research. My Internet presence is a permanent fixture on the World Wide Web. So, if I say something because I'm frustrated, aggravated, or angry, and later I decide to delete those words, it is possible I will still be accountable for them -- that they will be archived and saved and easy to reference -- for years to come.

It is difficult to be anonymous on the Internet. I have tried create anonymous spaces for myself on the Internet many, many times. Once I realized I had the potential to hurt people online, I thought it might be easier if I wrote in a completely separate space, changing my name, changing the names of the people I was involved with, finding different communities other than people I knew in real life to write for. I'm fairly certain I tried everything short of sending postcards to Post Secret to try to find a place I could thoroughly and completely express my worries, concerns, and emotions without fear of hurting anyone else, yet still have a network and community I could interact with about the issues I wanted to address. Unfortunately, I never found such a place. The most profound failure of this was when I started writing in an anonymous Diaryland account primarily to deal with my feelings about a failed romantic relationship, and that person easily discovered the account after a couple of months. (Oh, and that very Diaryland account is also permanently recorded in the Internet Archive, just for the record.)

In addition, I didn't want to be anonymous on the Internet. As a writer, I wanted to create an Internet presence, to develop a public persona and build trust and credibility among my readers and peers. It would be difficult for me to do that if I wasn't also willing to put my name to my work, so that I could be accountable and responsible for my words. So, eventually, I found other outlets to express emotions and communicate to others about sensitive situations that might be offensive or troublesome -- but I consciously chose to no longer discuss those situations publicly.

Your children will probably read your blog. As an aspiring writer, some part of me always held an abstract hope that, one day, my children might be interested in reading my body of work. I daydreamed about my great, great grandchildren digging out my old writing trunk from the attic and pouring over the notebooks and letters of their fabled ancestor -- or, more likely, digging through the Internet Archives for mentions of other relatives and glimpses of family histories. However, when my daughter was diagnosed with autism and with severe language delays, I wasn't sure if she'd ever be capable of basic communication, much less of pouring over my long library of online archives. At the time, I didn't realize that she was already absorbing much more information than she was capable of expressing, and I didn't know that her reading and writing skills would sometimes be much more advanced than her expressive language skills. And, a year ago, I didn't know that she was reading my blog, until she started asking me questions about things I had posted.

It's a very tricky situation, to be a parent and a writer whose primary subject is my own child when that same child is a member of my audience. I feel like I have to walk a very delicate balance when I share stories from our life together, especially since I have a history of wearing my heart on my sleeve and being open to the entire world about everything that is happening with me. Fortunately, my daughter is very aware of my tendency to post and write in such a public setting, and she is now capable of saying, "please don't write about that," or "don't tweet that." It pains me, however, to think that there were so many years that she wasn't capable of letting me know what was okay and what was not okay to share with others, and that there are probably posts and stories that she'd be mortified to discover I actually did share with the world.

Even now, it's sometimes difficult to know how to address important issues and tackle controversial subjects in a way that will help my daughter stay aware of current events but not be stressed out about them. I've recently addressed many distressing current events involving the murder of autistic individuals, and as I mentioned in last week's blog entry, my daughter was very upset by what she read in my blog. Obviously, I feel it is very important to discuss these issues, but I also have to remain mindful about how my daughter will react to my writing, and be ready to discuss these issues openly with her, to answer her questions and address her concerns.

In summary, when you publish something online, be prepared to be accountable for what you have published, and be prepared to be accountable to your own children. Everything you publish on the Internet is public. Everything you publish on the Internet has the potential to be permanent. Even if you're writing anonymously, it is relatively easy for someone to discover your true identity. And even if you think your child may never have the ability to read, or to research, or to find your writing on the Internet, you can't know that for a fact, because your child may surprise you. Keep in mind that many nonverbal autistic adults read and write on the Internet with clarity and eloquence, and one day your child may be one of those adults. Therefore, if you are a parent who does not want to use the phrase "I hate autism" around your child because you understand that they may internalize the negativity in that phrase and you fear that it may contribute to an incredibly negative self-image for  your child, I strongly urge you to reconsider using the same phrase on your blog and in your online writing. If you believe that such a phrase is too harmful to speak out loud to your child, then I hope you can see by my argument here how such a phrase could be just as harmful to them if you write it online. I absolutely understand and empathize that you may need a safe place to vent, complain, and find reassurance from others who deal with the same struggles and hardships that you do, but remember that the Internet is a public forum, and that your child is very much a part of that public audience, whether they are currently an active participant or not. As for myself, I will work to choose words that will uplift and empower my daughter, words that will promote acceptance and love.

I believe we should be mindful about the words we share with the world, and be mindful about the messages we send with those words. We live in an amazing time in history where every single individual has an opportunity to use their voice and reach a limitless audience. We are all empowered in ways I would not have imagined possible when I was a small child. We need to be mindful of the power we wield, and to harness that power responsibly and with equanimity.

posted by Devon Alley
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Thanks so much, Gail! And I love that quote you shared from Jon Kabat-Zinn. I think I need to take a little more advice from that -- I'm afraid of turning into a preacher about it.

Devon Alley April 13, 2012 6:22 PM

wonderful article! heartfelt, well written, coming from a beautiful space - you and your daughter are blessed to have each other!

on a lighter note, it is easy to tell you have been taking MBSR - I lost track of the # of times you said "mindful"!

I just read a line in Jon Kabat Zin's "Wherever You Go There You Are" (10th anniversary edition) that jumped out at me (the blabbermouth!) ".....every time you get a strong impulse to talk about meditation and how wonderful it is, or how hard it is, or what it's doing for you these days, or what it's not, or you want to convince someone else how wonderful it would be for them, just look at it as more thinking and go meditate some more, The impulse will pass and everybody will be better off - especially you."   I wish I had read that a few weeks ago instead of just last night!

thanks again for the wonderful blog!



Gail Mershon, pediatrics - OT, KenCrest April 10, 2012 8:09 PM
Philadelphia PA

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