Meet The Mother Changing The Conversation Around Autism

Eileen Lamb speaks in a way that is near impossible to imitate. Her syllables come out rounded and quiet, with guttural French Rs and a Southern lilt that makes each sentence undulate. It’s like Paris and Austin are competing for space in her dialect.

A native of France, Lamb first arrived in Texas at 21, working as an au pair. Less than a decade later, she was married with two children and a Tudor house in South Austin. Since then, she’s hardly left. “I don’t travel much because of my son,” she tells me in a hotel room in Midtown Manhattan, tugging apprehensively at the ends of her sleeves. This is her first time traveling alone in more than six years.

Charlie, the oldest of Lamb’s two sons, has nonverbal autism — a form of autism spectrum disorder (ASD) that prevents him from speaking.

“When he was still a toddler, all of a sudden, Charlie just stopped talking. He said a few words and he just stopped. Stopped looking at us. Didn’t want to be around other people. Was in his own world,” she says.

Around this same time, Lamb began to write. She built a blog as an outlet — a means of communicating candidly in the ways she couldn’t with her son. Now, four years later, The Autism Cafe has more than 160,000 Instagram followers — and Lamb has become something of an icon for parents of children with disabilities across the country.

As a whole, ASD is a neuro-developmental condition that makes communication or social interaction particularly difficult. There are no standard-issue signs or symptoms of autism. According to the CDC, one in every 59 children is diagnosed with ASD, and it’s possible that for each of them, the condition manifests in entirely different ways — there are those who have learned to navigate public spaces with comfort, along with children like Charlie, who cannot speak at all.

“For the most part, Charlie screams when he needs something. He can’t use words, so even if it’s something as simple as a mosquito bite, he can only scream,” Lamb says. “As a mother, it is so hard to know your son needs something and to have absolutely no idea what that thing is.”

“But you know when he’s happy because he starts jumping and clapping his hands. He just looks like he’s about to fly, he flaps them so hard. It’s amazing.”

In the hotel room where we are photographing Lamb, I watch as she extricates herself from the makeup artist and takes a seat on a couch positioned behind the photographers and the stylist, briefly folding into herself — curling her shoulders inward — before she’s called back for the next shot. “Social situations can be really hard for me,” she tells me later, by way of explanation. “There were a lot of people in there — I got overwhelmed.”

Like Charlie, Eileen Lamb has a version of autism spectrum disorder. While undiagnosed as a child, she began to recognise some of her own tendencies in Charlie’s when specialists gave names to his behavioural patterns.

“After [Charlie] was diagnosed with autism, my mum kept telling me that [the diagnosis] wasn’t possible because I had been the exact same way as a child,” Lamb says. “I started reading about autism in adults, and then I decided to go through a therapeutic assessment — 20 hours of testing with a doctor.”

When Lamb received her own autism diagnosis, it came with a sense of relief. In some way, she tells me, she was comforted to know that the very social hesitancy that had disenfranchised her growing up now served as her entry into a larger community.

But for all the reasons her own ASD confirmation provided access to a broader circle, she still found it largely impossible to connect with other parents when it came to mothering a son with autism, too.

“I started [writing] on a hard day with Charlie,” she explains. “[My husband and I] took him to a therapy autism centre for a Halloween party, thinking he might make some connections with other kids. But even among other kids with autism, he was still very much different. The other kids could communicate and interact and he was just screaming — I felt so lonely.”

That evening, Lamb drafted her thoughts into a post that she published onto her Facebook feed. Soon after, comments began to trickle in. And then they came by the hundreds.

The responses were gratifying, Lamb tells me. But for her, they were merely second to the realisation that writing was precisely the outlet she needed. It was where she found she was most articulate, most capable of finding ways to frame her experience with Charlie. Through her posts, she gave language to a complex version of motherhood — one that was primarily concerned with the absence of words.

Neither a mommy blog nor a decidedly medical resource, The Autism Cafe is Lamb’s hub for advice on things like identifying autism in children or effectively decorating a bedroom for a child on the spectrum. It’s her place to vent about the particularly hard days or to comment on the language we use to frame both children and adults with autism.

“I have a hard time communicating [socially] with spoken words. Writing feels so much simpler,” she says. “But at the same time, it reaches so many more people.”

When she first built her blog, the audience reception was even greater than she could’ve predicted. Mothers of all kinds, mental health advocates, and even children reached out with questions and affirmations of sisterhood. “For the first time, I felt like other people knew what it was like to be inside my head,” she says. “[The blog] made me feel less alone.”

For all the reasons Lamb had previously felt othered by the very act of raising Charlie, she now found herself at the centre of a circle brought closer to her because of Charlie’s condition. “People will comment and start conversations. They remember Charlie’s birthday and they reach out to me. They offer me tips or thank me for the advice I’ve given them,” she explains. “[The blog] makes me feel like my family has a support system.”

Lamb doesn’t know that she’ll ever hear her son put together a sentence. But what she does have, in the interim, is the opportunity to speak for her and Charlie, both, through the platform she’s created online. A small bit of agency, amidst a whole lot of ambiguity.

“I spend a lot of time wondering how to be a good mother when there’s no textbook for scenarios like this,” she explains. “All I can do that’s tangible is write down how I feel.”

Her next project — a full-fledged book — is set to publish next year. As she describes it, it’s a personal stab at the parenting handbook she never had: It is her experience raising Charlie, on paper, framed in ways she hopes other mothers will find useful.

“After my book, I’ve been thinking about writing a screenplay,” she muses. “There are so many TV shows that show motherhood in really honest ways, but I haven’t seen anything yet with a child whose condition is as severe as Charlie's.”

She is momentarily quiet when I ask what comes next for Charlie. “We take it one day at a time,” she offers. “There’s so much uncertainty about Charlie’s life and what it will be like. Will he be able to talk? Make friends? Take care of himself? I just want him to find a way to communicate, even if it’s in sign language and I never get to hear his voice.”

Research has suggested that some children diagnosed with autism can go several years without forming full sentences, only to learn to speak in their adolescent years. Others will gain and lose their sense of language at different stages. A recent study from Boston University asserts that nearly one third of people with autism spectrum disorder “never learn to speak more than a few words.”

Still, even for children with nonverbal autism, a capacity for communication is never entirely out of the question. “Nonverbal does not mean noncommunicative,” the Autism Speaks Autism Treatment Network (ATN) states. Some children may begin communicating with abstract symbols or concrete tools, while others will respond to gestures or forms of sign language. There are brands of music therapy and a potential for written communication. But Lamb also understands that nonverbal communication has its own power.

“I write better than I speak,” she says, “so Charlie and I have that in common. We communicate silently.”

In the hotel’s lobby bar, killing time before her flight back home, Lamb scrolls through photos of Charlie and his younger brother on her laptop, explaining where and when each was taken. For the most part, the faces in the photos grin at the camera, squeezing one another in the clunky, affectionate way that is common among little boys. She smiles. “I’m looking forward to getting back,” she says. “But for a little while, it felt good to have someone else take pictures of me. I’m usually the one doing all the documenting.”

I tell her I am going to write that down.