Pity Porn and the Subversion of the Autism Parent

6/25/2014

I'm getting all caught up in it. The attention, I mean. It's starting to feel twisted. I write or post or comment about something that has happened to our perpetually overwhelmed family and you immediately feed me with attention worthy of the curated content I am feeding you. I know it. You know it. We all know it. I wanted to write this to start a conversation. I don't want an internet war because I can tell you right now if I can't win I won't play. I just wanted to engage you in a conversation about something that has been bugging me lately.
Do our blogs, books, essays, posts, comments, charities etc subvert the efforts of the strong, educated, powerful and fierce autism parent? Does our tendency to offer post after post of pity porn for your heart breaking pleasure corrupt our cause? Is all press good press? What do you think?

20 Comments

Susan Mock

6/25/2014 05:44:32 am

I don't feel what you write qualifies as "pity porn" at all. You are writing about your life and experiences, which provides others with insight into you and your family as you raise an autistic daughter.

Rachel

6/25/2014 05:49:55 am

I'm the fierce autism parent who actually recovered her kid and nobody -- NOBODY -- wants to hear from me. Not that I claim to have some magic potion to cure all kids on the spectrum. I do not. We were fortunate in that we found the right biomedical treatment (MB12 injections) and therapy program (Son-Rise) for my kiddo. Results may vary. A lot. I know that. I don't preach that everyone should do what I did. And yet still, I'm pretty much ignored by other autism mommies. I do not know if it's too hard to hear from a mom of a once VERY severe child who is now fine, or if my story sounds unbelievable. But for whatever reason, I feel like I'm no longer welcome. Perhaps it's my use of the word recovered? I know that irks some. But my child did not know I existed, had no method of communication (he couldn't even point or nod), and he was extremely anxious. He couldn't even use a chair, regular cup, or blanket at age three, let alone play with a toy (even on his own). I do consider that a disability, so I do consider him recovered.
But more directly to your point, I think people like reading stories about families who struggle more than those who succeed. But at this point in the history of autism, I think we need stories such as yours more. Autism needs more funding and research. People need to understand just what a struggle autism is for many, many families. They don't need to hear that hey, some kids (who really did have severe autism) actually recover or people might think there's no need to financially support research and emotionally support families.

Jennifer Bentivegna

6/25/2014 07:29:26 am

Rachel, I am extremely interested in hearing your stories.

Rachel

6/25/2014 11:27:23 pm

The Son-Rise part of our story is online here: http://www.playwithriley.com. It's a bit outdated because Riley graduated from his Son-Rise program nearly a year ago though.
We same incredible gains from Son-Rise alone but I was going to burn out. Thankfully, the first thing we tried with biomed was a grand success and his rate of progress skyrocketed. You can find great info on MB12 injections, the temporary side effects, and how it works here: http://www.tacanow.org/family-resources/methyl-b12-a-treatment-for-asd-with-methylation-issues/ Feel free to ask any specific questions you might have. There's an email address on the playwithriley.com site, if you don't want to post questions here.

Rachel

6/25/2014 11:28:22 pm

We *saw* incredible gains. Oops!

Erin link

6/25/2014 05:52:30 am

Personally, I don't see blogs as pity requests. I find other blogs incredibly helpful because I identify with them. I can see their posts and say "We are not alone". I can see posts from sites with older children and get a glimpse at a positive future. I can see the outcome from others who have forged a path for us. The reason I started my blog was to help others identify with us as well. There is an added bonus that others can get a glimpse into our daily lives and possibly be more tolerant of neurodiversity.

jacqueline

6/25/2014 06:01:20 am

I don't find any of anything that's written worthy of classifying it as 'pity porn'. It's useful and intriguing. It's incentive to learn more about a subject so many people are still ignorant to; for an understanding of how we, the parents of these children, do it. It's a solace for those of us who go through it all everyday to see how other families differ/are similar. I thoroughly love seeing what Kate does because she, in many ways, is soooooooo similar to my own daughter. I feel the connection like a heartbeat. There...

Deb Casey

6/25/2014 06:06:54 am

I never consider what you write as "pity porn". What you write is your family's interpretation of your experiences with autism. Yours are totally different from mine. My son is now 35. There was no early intervention back then. The first doctor I took him to, when he was 3 (they wouldn't see you before then) told me to put him in a home and forget I had him (this was 1981!!!) He still lives at home, has had the same job in the community for 15-1/2 years (he does data entry, filing and scanning) and is looking forward to moving out some day (with the proper supports). I like seeing the new advances in treatment. (My son was from the 'Refrigerator mom' era.

Write away - you and Autism Daddy and Autism with a side of fries - we 'older parents' appreciate everything you write.

Heather

6/25/2014 06:25:24 am

I think what you write makes me reflect on what goes on in my family...it is nice to know that I am not the only one out there dealing with the same stuff! Keep it up...you are awesome!

Stephanie

6/25/2014 06:56:33 am

I don't see it in your blog--I appreciate blogs like yours because it gives me a place to know I am not alone. And, that it reflects the truth--life itself is full of both joy and heartache. If you only discuss one, it's not a clear view. I focus on the joy, knowing that yes there is struggle, and sorrow, but the joy is always the heart of it.

Yvonne

6/25/2014 07:09:05 am

I signed up for your blog after reading the Dear Daddy article and stay because it is helping me understand we are not alone in this journey (and you add the right touch of humour) Your article gave our family the courage to take our son to Disney, on a plane. This has provided him with a lifelong memory that we didn't think was even possible. Please keep on sharig

Kim

6/25/2014 07:33:01 am

As a Registered Nurse in a Comprehensive Development Classroom, I am always looking for insight and helpful ideas. I appreciate the candid comments and parent perspective. I enjoy your posts and have learned a great deal from them.

Leah

6/25/2014 07:38:21 am

My opinion may not matter as much because I'm not a mother of a child with autism. However, I am a special education teacher. I find your blog incredibly real. I have found that I get a deeper insight of what my families experience. Although I spend a large part of the day with them, nothing compares to the forever life you are experiencing with your daughter. I want a better understanding of the daily hardships, conversations, and wins that families experience. I know that every situation is different, but your blog is real, funny, and gives light into something that was once dark. In my opinion, none of that is a "pity party".

Melissa

6/26/2014 12:08:17 am

I agree with Leah. I began following you after the Dear Daddy article. I am a teacher that has seen more and more autism. Your raw and transparent stories help me understand a bit better. You have a gift of words. I am in awe of your strength. I don't see your posts as seeking pity at all. I never would have thought that! Thank you for your posts. Keep it up!

Lori

6/25/2014 07:39:57 am

I work in a preschool classroom, your blog has shared helpful ideas. Your blog as well as the followers and their thoughts and suggestions are greatly appreciated.

Liz Brewer

6/25/2014 07:50:14 am

Your blog and the others to which you refer are professional development for me. In the school system I do not have the advantage of learning what I need to deal with my students. As a specialist teacher I find, children on the spectrum are often put in my class thinking "your subject does not matter and gives us time to schedule breaks for the EA". Therefore I learn by reading and communicating with parents. The other great thing I see is that the subject is kept in the public eye when you write. It does not become out of sight, out of mind.

Jacqui

6/25/2014 10:19:40 am

I personally have so appreciated your candor. We don't know yet if my son is Autistic but he definitely has Sensory Processing Issues. When I read your posts....it makes me feel okay that I worry/cry about things like Valentine's because I too don't know if my son has any friends. So often people play pretend about what it's like to be the parent of a child with a disability. I don't want to pretend and I like that you're so open with the reality of it all. I think that it helps to create a platform of recognition/support/funding/research for our cause.

Shelli

6/25/2014 11:50:59 am

I don't consider it to be pity. I like to participate in and encourage a healthy debate of a subject. I am not in it for war, as I genuinely want to hear all sides. I know it is hard to believe, but my way is not always the right way for others. I have, on occasion, changed my beliefs on something because the opposing side showed me enough credible information to be swayed further into doing further research on my own. interacting in this on-line community every day though, has really opened my eyes to how polarizing certain subjects are....there is just no gray with some people. in the end, if it works for me and no one is hurt, I am a proponent for my family only. i can share it with others on the chance that it may help them along their journey too.

Lisa

7/1/2014 04:16:00 am

I too started following your blog after the Dear Daddy article. I do not have children with autism, but follow your blog so that I can educate my own children about compassion and kindness towards other children. I think your blog is incredibly real and you are doing wonders by sharing your story.

Ethnic Food link

7/22/2014 02:38:00 pm

Fabulous post. thanks for sharing

Your comment will be posted after it is approved.

I talk about Autism, a lot

Pity Porn and the Subversion of the Autism Parent

Leave a Reply.

Archives

Author