Interview with Eileen Lamb, Mother and Advocate

Conducted by David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment

I had the wonderful opportunity to connect with Eileen Lamb who generously shares her insights and experiences in this short interview. Many of you are familiar with Eileen’s blogs that are consistently insightful, compassionate, and sensitive to the diversity that runs throughout the autism community.

David: Can you let our reader know a bit about your life prior to becoming a Mom?

Eileen: I was born and raised in France. I spent my free time at the local stadium watching our local soccer team practice and play. I also enjoyed playing online poker. School was too overwhelming for me, so I ended up getting my bachelor’s degree online. When I was 21, I decided I needed a big change and applied to be an Au Pair in the United States. I found a great family in Austin, TX, and took care of their little boy for a year. While in Austin, I also met my husband, and the rest is history. I’ve been living here for over 10 years and couldn’t imagine ever going back to France. After becoming a mom, I found a new interest in photography. At first, it was just for fun, to document my growing family, but I ended up taking a deep dive and learning a lot about photography. Now, it’s a hobby but also part of my job as a blogger. It’s become a great way for me to express myself.

David: Thank you for sharing that background. Can you tell us about Charlie and Jude?

Eileen: Charlie is my oldest son, he’s 9 years old and was diagnosed with Level 3, severe autism, when he was 22 months old. He’s nonverbal and communicates basic needs with an app on his iPad. He’s also diagnosed with ADHD and intellectual disability. Cognitively, he functions like a toddler and requires 24/7 care and supervision. Jude, my youngest, is on the opposite end of the spectrum. He was diagnosed with Level 1, mild autism. He’s a chatterbox and loves math. He’s a bit like the stereotypical high-functioning autistic individual you see in movies and TV shows.

David: You have a somewhat unique perspective of raising two children with ASD. Any advice for parents raising multiple children with learning differences?

Eileen: My advice to parents: autistic children are all different, don’t be afraid to try things. What works for one may not work for the other, and that’s okay. Never stop advocating, and don’t be too hard on yourself. And the hardest: Don’t compare your child to the other. It’s difficult, I know…

David: That is wonderful advice. What was your experience navigating their evaluations, diagnoses, and interventions? How did this differ between your two children?

Eileen: Honestly, I think I got lucky. Charlie got his official diagnosis within a few months of us suspecting something was going on. A month later, we were able to start therapy based on applied behavior analysis (ABA). Jude was first evaluated around 2, and the developmental pediatrician wasn’t clear if his behavior and delays were caused by autism or lack of exposure to neurotypical children, so we agreed to keep an eye on him and re-evaluate a few years later. We went back when Jude was 5 and then it was clear that it was indeed autism. Jude did a few months of ABA, and also speech and occupational therapy. I haven’t faced many difficulties in getting my children evaluated which I’m thankful for.

David: That is wonderful as so many parents experience delays and barriers at every step of the journey (e.g., detection, diagnosis, access to effective interventions, and even maintaining that access as their young children grow a little older). How did these experiences contrast with your own experiences as a child growing up in France?

Eileen: In France, I grew up feeling completely out of place, I was a textbook “Asperger kid,” yet I never got an official diagnosis. The psychologist told my mom that I was a shy and gifted child and suggested I skip a grade so I wouldn’t feel so bored and lonely. That was it. It took 25 years for me to get an official diagnosis and that, too, happened in the USA.

David: What services have you found the most helpful, particularly for Charlie?

Eileen: ABA has been a game changer for Charlie. He’s learned basic communication and self-care skills. He loves going, and I love that he learns new skills. I don’t know where we’d be without ABA. Speech and occupational therapies are great but ABA has been the most helpful. We’re currently adjusting goals with Charlie to fit his needs at the time. I love that it’s personalized to the child. Right now, Charlie is working on things like teeth brushing, answering open-ended questions with his AAC device, and learning numbers.

David: I am glad that Charlie’s intervention has been positive. Has your experience with ABA synched at all with the criticisms levied by some members of the neurodiversity community? If so, in what ways?

Eileen: It did not in any way. I was terrified to start ABA because of all the horror stories I had read online. People called the therapy abusive and compared it to dog training. All I wanted was for Charlie to learn basic skills like communication, independence, and safety. For the first few years, we did ABA only in-home. I was home all day with his ABA therapists, meaning I witnessed hundreds of hours of therapy. Not once did I feel like the therapy was abusive.

David: Thank you for being so forthcoming. It is important that we help the community recognize that well-delivered ABA can help individuals learn essential skills, remain safe, as well as be happy, self-reliant, and empowered. I know you have been very active on social media. How have your posts been received? How have you navigated some of the intense vitriol from some members of the community?

Eileen: I’m not going to lie, the hate I receive on social media used to affect me. On the worst days, I’d get hundreds of messages/comments from so-called autism advocates insulting me because our views don’t align. Nowadays, it doesn’t affect me anymore, it’s always the same thing, I know which comments are coming. “ABA is abuse,” “you’re a horrible mother for having your child in therapy and trying to make him normal,” “you have self-internalized ableism” etc. I know these things aren’t true, so I just block people now and move on.

David: Many parents are experiencing this treatment which is so disheartening although I applaud you for your resilience and for continuing to use your voice to advance parent choice, the needs of children more severely impacted, and science-based intervention. Your courage in sharing your experiences and views no doubt puts you at even greater risk for harsh criticism. What do you think is needed to create a more respectful and accepting space for individuals who may differ significantly on their views of autism and how best to help?

Eileen: Autistic people are not a monolith. No one can speak for the entire autistic community. We’re never going to agree on everything but respect is key. There’s no point in insulting people who have a different opinion. It pains me when I see autistic people insulting parents on social media simply because they love the color blue or the puzzle piece symbol. I wish people spent their time and energy advocating for better services and resources for autistic people rather than arguing about symbols and terminology.

David: I could not agree more! What advice do you have for parents of newly diagnosed children considering ABA?

Eileen: Take what you read on the internet with a grain of salt. Some of the loudest voices against ABA therapy have never been in ABA therapy themselves. Take time to visit several ABA centers before choosing one. Get involved! Our therapists and BCBA communicate with us. If you don’t like the way a skill is being taught, say something. ABA is not one-size-fits-all, it’s important that the therapy is personalized to the child. Good luck and remember that you’re not alone in your journey!

David: What advice do you have for behavior analysts or other professionals in the field?

Eileen: To professionals: Remember that all people with autism are different so what worked with one of your clients may not work with the next. Listen to your client’s needs and feedback if they’re able to communicate, or to their parents if not. Don’t prevent children from stimming or force eye contact on them. Be patient.

David: How can our readers follow you?

Eileen: @theautismcafe on Instagram, Facebook, Twitter and Pinterest, and my blog is https://theautismcafe.com

David: I appreciate your openness in sharing your incredible story with our readers and being so generous with your insights and experience. I look forward to staying in touch and suspect that many of our readers will follow you and benefit from your writings. Thank you kindly for taking time from your busy schedule for this interview.

Citation for this article:

Celiberti, D. (2022). A conversation with Eileen Lamb, mother and advocate. Science in Autism Treatment, 19(10).

Related ASAT Interviews:

Related Perspectives Pieces:

Related ASAT Articles:

Related Media Watch Letters: