On her website, The Autism Cafe, Eileen Lamb blogs candidly about everything related to autism. As the mother of a severely autistic child (her oldest son, Charlie, who is seven) who is on the autism spectrum herself, Eileen has a unique, multifaceted perspective on the issues affecting the autism community. On her blog, Eileen never shies away from the toughest topics facing the autism community and the sometimes difficult reality of balancing Charlie’s needs with those of his brother, five-year-old Jude. In addition to her daily work on The Autism Cafe, Eileen is the author of All Across The Spectrum and an active advocate for autism-related issues on social media.
For our October newsletter, Eileen spoke to Intercare about everything from how the pandemic has impacted her family to the role technology can play in the lives of people affected by autism.
How has parenting an autistic child been impacted by the pandemic for you?
It was difficult because Charlie was out of therapy for months. When Charlie doesn’t work daily on skills he’s learned, he forgets them. He also thrives on routine, so having his life completely changed overnight was hard on him. We are now doing one-on-one ABA therapy again that follows CDC guidelines, and things are going well.
Do you use any apps or other tech-based resources regularly that help you personally as someone on the spectrum?
I like apps that help me stay organized and also love music and meditation apps.
Are there any apps or other tech-based resources that you've found are helpful for your son or for you and your family as you help manage his needs?
The biggest one is Proloquo2Go, it’s an Augmentative and Alternative Communication App that allows Charlie to communicate basic needs such as “I want + [item].” We also have a visual timer and a play schedule.
How do you think technology is changing life for people on the spectrum? Do you think it makes their daily lives easier or more difficult, overall, and why?
I think it depends on the autistic person. I can only speak for myself and for what I’ve seen with Charlie, and it is making our daily lives much easier. Without technology, Charlie wouldn’t have a way to communicate with any accuracy right now.
You run a hugely popular blog/website, The Autism Cafe, so you clearly have firsthand experience with how technology can help people in the autism community connect. What do you think are the biggest benefits of connecting online for people in the autism community?
To help us feel less alone. It’s nice to connect with people who are on the same journey as us. My friends are amazing, but no one understands autism to the level of someone who’s autistic or raising a child with autism themselves.
Thanks to the internet, information about autism is more readily available than ever before, but that means inaccurate information about autism is also more ubiquitous than ever. What advice do you have for people going online to learn about autism who want to make sure they're getting accurate information from trusted sources, especially when they're reading blogs or message boards that might not be vetted by editors or professionals?
Stay away from people or websites who are trying to sell you a “cure” for autism or promoting life-changing diets. There is no cure for autism. Always take everything you read online with a grain of salt, and remember that blogs are personal opinions. What I share on mine is my opinion only—I don’t speak for the entire autism community.
What are some of the best places online (other than The Autism Cafe, of course) for people in the autism community to connect and share their stories and experiences?
My friend Kate Swenson @findingcoopersvoice [Editor’s Note: Read our Intercare Interview with Kate Swenson here!] , and also (a different) Eileen @autismwithasideoffries are places to connect with people (in the autism community) that are free of judgment.
When did you decide to start sharing your experiences online? Was there a specific incident or moment that led to your decision to launch your blog?
You know, I never told myself “I’m gonna write a blog” — it just kind of happened. I started writing on Facebook to educate friends on what I’d learned about autism, as well as to keep far-away family updated on Charlie. I was surprised when strangers started commenting and interacting with my page. It was comforting for them, but also for me. After a few months, I took the next step of turning my Facebook Page into a Blog, and then Instagram @theautismcafe
One of the first times I shared on my blog was after a Halloween party at Charlie’s ABA center. Charlie was two. I thought I would connect with other moms who understood our struggles with Charlie, but even among other autistic children, Charlie was still so different. The other kids were participating and enjoying getting candy and wearing costumes, but Charlie was just screaming his head off. We had to go home and that’s when I started writing. Social media has really helped me connect with people who understand these struggles.
In what ways has blogging about your experiences had a positive impact on your and your family? Has it ever been difficult to continue blogging or added stress to you and/or your family's lives?
It’s helped me make connections with other moms. It’s helped me support my family financially, too. It definitely adds stress to our lives at times because I get a lot of hate mail, and as much as I try to ignore it, it still affects me.
If you could go back in time and give yourself one piece of advice about parenting a child with autism, what wisdom would you share?
Be kind to yourself.
You've written before about the #actuallyautistic movement and the negative comments you've received online from some members of it for blogging about your experiences raising your son, Charlie. You've also been open about the struggles of talking about autism, even within the autism community. What advice do you have for people trying to engage in important conversations about autism, but who find the very prospect daunting because of fear of misspeaking or offending people in the autism community (be they people with autism, advocates, or others)?
Do it anyway. We can’t let a minority of angry advocates bully us into silence. I know firsthand how difficult it is to receive these comments, but for every mean comment, there are 10 people who read your posts and feel a little less alone. I get tons of messages from people who are too afraid to speak about autism but thankful for those of us who share the beauty and chaos. Those people we help by sharing make it worth the risk. I also think fear is never a good reason not to do something.
On a related note, you've engaged in dialogues with critics on your social media accounts in the past and have shared screenshots of some of these interactions in blog posts over the years. Have you ever had a particularly productive or positive experience engaging with a critic in which you were able to reach common ground—or at least civil disagreement? If so, how did you start from a place of intense criticism and change the tone of the conversation? If not, why do you think it's so difficult for people with different opinions about autism and how it's treated (or even discussed) to have productive conversations about these issues?
No, I’ve never been able to. I did have a handful of people come to me months/years later to tell me they’ve left the neurodiversity movement because they came to realize that the bullying of autism parents wasn’t okay.
There’s a lot of conflict around ABA Therapy. I think to have productive conversations, autism parents need to acknowledge that some #ActuallyAutistic did have bad experiences with ABA. On the other hand, #ActuallyAutistic need to realize that just because they had a bad experience doesn’t mean the entire field of ABA is abusive.
What if instead of calling parents who put their children into ABA therapy abusive, they wrote a post about “5 things to look for in an ABA center”?
There’s so much misinformation about ABA therapy. One of the biggest criticisms is that they don’t teach children to communicate unless it’s with their voice, whereas Charlie has been using technology to communicate for five years, taught to him by his ABA therapists.
Finally, for anyone who isn't familiar with your website, The Autism Cafe, can you give a quick overview of what you have to offer and the community you've built there? It’s an amazing resource that we at Intercare thoroughly recommend!
Thank you! My goal is to share the ups and downs of raising a severely autistic child while being on the spectrum myself. I want to educate readers about autism, I want people to know autism isn’t something to be feared, it doesn’t make us "less-than", we’re worthy of being loved and not mocked. But I also want the struggles of autistic people to be acknowledged, some autistics will never have the luxury of communicating and living an independent life and we can’t forget about them. It’s a balance.