In the United States, autism manifests in three levels of severity: level one, which is mild and requires some support, level two, characterized by more noticeable difficulties, and level three, the most severe form that necessitates constant supervision. Families like Eileen Lamb’s are on the frontline, navigating the challenges and misconceptions surrounding autism while advocating for their loved ones.
Eileen’s son, Charlie, has level three autism. He is non-verbal and requires around-the-clock care. His situation is further complicated by pica, a disorder that causes him to consume inedible items. At its most extreme, this compulsion led Charlie to eat strange and dangerous objects. He would just try and swallow nuts and bolts and rubber bands every 90 seconds.
Eileen’s other son, Jude, 10, is on the higher-functioning end of the autism spectrum and has level one autism. Since childhood, he has lived with the mildest form of autism on the spectrum. Eileen doesn’t see herself in normalization role, but in a skill-building role.
“I’m not teaching Charlie to be normal. I’m teaching him skills that most people take for granted, like communication, like safety, self-care. These are things that he deserves,” – Eileen Lamb
Eileen’s multifaceted experiences are further underscored by her own late-life diagnosis of autism. She shares that, having just gotten her diagnosis after almost 30 years, she was finally given the tools and language to understand herself.
Lyric, a U.S.-based advocate and consultant diagnosed with high-functioning autism a decade ago, shares insights from her journey as well. As an autistic self-advocate, she works alongside the “actually autistic” movement to promote authentic representations of what autism can look like.
“There’s unfortunately a movement of people that have been led to believe that autism is this separate entity from their child,” – Lyric
The myths of autism don’t stop in the public discussion. Former President Donald Trump and his health secretary Robert F. Kennedy Jr. have reignited debunked claims linking routine childhood vaccinations to autism. This narrative dates back to a fraudulent study, later retracted, that was published by the disgraced, former gastroenterologist Andrew Wakefield in 1998. The consequences were dire, as the medical journal later retracted it because of its utter lack of scientific validity.
That’s why Dr. Daniel Geschwind, one of the country’s foremost experts on autism, pushes back against these claims with a firm underpinnings of scientific proof. He especially wants parents to know that about 95 percent of autism is due to genetics. On top of that, he points out that autism’s heritability is about 80 percent.
“That question has been asked dozens of times, in many study designs, across many countries. There is no association [between autism and vaccines],” – Dr. Daniel Geschwind
The endurance of this misinformation is especially worrisome to those who know autism in a more complex way. Dr. Geschwind voiced his concerns over the public’s disregard for credible science:
“I feel sad that the world has come to a place where credible science is being disregarded,” – Dr. Geschwind
As Eileen comes to terms with the new normal that is life with Charlie, she thinks back on the lengths they had gone in order to keep him protected. Without zippers, his bed opens on all sides, allowing his escape at night. As she explains it, they are often kept in what she refers to as a “baby jail.”
“Most parents read a book and tuck their child in bed at night. I have to zip my child safety bed so he doesn’t kill himself overnight. I know this sounds extreme, but this is what we have to do,” – Eileen
This stark reality deeply illustrates the profound struggles families encounter as they raise children with extreme autism. Eileen suggests we focus on understanding and acceptance, not trying to eliminate or cover up the condition.
Even with these challenges, Eileen is optimistic about Jude’s development. Yet even more telling, all along the way he’s shown his own individual strength, especially intellectually.
“It sometimes makes me better at things. I got to go in the fifth grader lessons for math and I was the best one,” – Jude
The conversation surrounding autism today is anything but nuanced, and ignores the complexities of individual lived experiences. Lyric notes that when we frame autism like it’s an enemy or something distinct from the child, we strip away that child’s humanity and individuality.
“It’s teaching autistic kids it’s not ok to be autistic,” – Lyric on Applied Behavior Analysis (ABA) therapy.
