By: PJ Feinstein
Eileen Lamb has been sharing her experiences for several years online about what it’s like raising a son with severe nonverbal autism — first on Facebook and then on her blog, The Autism Cafe. Last month, the mother of Charlie and Jude published her first book, All Across the Spectrum, which features stories about grieving, controversies in the autism world, parenting an autistic child, and receiving an autism diagnosis as an adult.
We chatted with Eileen about her new book and, of course, wanted to know what book about autism she’s loving right now: “I really like My Brother Otto by Meg Raby. It's a children's book about two siblings, and one of them, Otto, is autistic and nonverbal. Jude always asks for it and calls it ‘My Brother Charlie.’”
What were the circumstances that precipitated Charlie's autism diagnosis?
Charlie has always been different from other kids his age. I remember the first time I had a playdate with a mom and her baby, he cried every single time the other baby approached him. I didn’t think much of it, but it happened again and again. Charlie was very much in his own world. He only had a handful of words, he was very specific with the food he ate, and he had odd sleeping habits. His way of playing with toys was repetitive, too. He’d spend his days lining up toys in a perfect line and would get very upset if his routine was disturbed. We brushed off most of these things as normal differences in baby development. After all, kids do develop at their own pace. But at around 18 months old, Charlie stopped speaking altogether. He wouldn’t even look at us anymore. That’s when we realized that it was more than just developmental delays.
What was your first reaction upon learning that Charlie has nonverbal autism?
It was a strange experience. Part of me was relieved because we needed that autism diagnosis for our insurance to cover ABA therapy, which Charlie needed, as speech and occupational therapies hadn’t been enough help for him. But the other part of me was terrified. I didn’t know much about autism back then and couldn’t help but worry about his future. Would he ever be able to communicate? Care for himself? Have friends? Stay safe? Everything felt so uncertain, and over four years later, I still don’t have answers to these questions.
Tell me about the process of getting diagnosed with autism spectrum disorder as an adult: Why did you suspect you have autism, and how did you feel after it was confirmed?
When I told my mom that Charlie was autistic, her first reaction was “that’s not possible, you were the exact same way as a child—well, except you talked a lot.” And it’s true. As a kid, I’d always felt different. My interests were different from my peers. I struggled socially. I was also in my own world, didn’t like crowds or loud noises, had social anxiety, took things weirdly literally, and had a hard time with eye contact and small talk. I was made fun of throughout my childhood.
I never thought anything more of it until Charlie himself was diagnosed and then the pieces started falling into place. I looked up signs of high functioning autism and realized I had them all. I didn’t want to self-diagnose, I needed to be sure so I went through a lengthy therapeutic assessment with an autism specialist, and at the end of which it was confirmed to me that I was indeed autistic. I felt a wide range of emotions. Same as with Charlie’s diagnosis. A little relief knowing what was wrong with me but also a little scared because I was now an adult and help isn’t readily available for us, and a bit upset that no one in France was familiar enough with autism to notice the obvious right in front of them. Therapy as a child would have been beneficial for me.
Do you think having ASD yourself makes it easier or harder to raise an autistic child?
It’s easier for certain aspects, and harder for others. For instance, I sympathize and understand when Charlie is upset by a noise, even though people around us often don’t even notice said noise. On the flip side, it’s frustrating because even though we share the same diagnosis, our struggles are different and vary greatly in their severity. Charlie can’t communicate beyond basic needs for which he uses an app on his iPad. We don’t know if he’ll ever be independent. On my end, I was able to get married and have kids. I struggle on many levels, for sure, but to a much lesser extent than him.
You've been blogging at The Autism Cafe for four years. What inspired you to start writing and why has it been important for you to keep it up?
I started writing on a Facebook page, The Autism Cafe. I wanted to unload the heaviness of my mind after Charlie’s diagnosis and was hoping to break the stigma around autism a bit. I’m from France, and there, autism is taboo and not well-understood at all. It was important for me to not let judgment from people stop me from sharing our journey. After I shared a few posts, people kept coming back to my page and thanking me for my honesty and vulnerability. I could barely believe it, but I was helping people and that pushed me to keep writing and start an actual blog. I didn’t expect to keep blogging.
Your first book, All Across the Spectrum, was published last month. Why did you want to write a book, and how does it differ from your blog?
I’ve always loved writing. Writing has been my escape and a way to express myself since I was a little kid. I felt like my unique perspective on autism was an interesting story, and I want parents of autistic children to know that they’re not alone. I understand all the mixed emotions that come with raising an autistic child. There are a lot of challenges and it’s not easy every day, but there are also beautiful moments and successes, and these are worth everything.
What's next for you?
I will keep writing on my blog. I’m also working on my second book and a screenplay that I hope will both come to life soon. Stay tuned!
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