Labels can harm, but they also can help: See ‘profound autism’

Labels are a divisive subject. When used inappropriately, they have the power to misrepresent and dehumanize people. As the mother of a child with autism, I have seen numerous instances in which hurtful or inaccurate labels have been applied to my daughter. Yet there are times when using accurate labels can dramatically improve the lives of those with autism. The specific label I’m thinking of is “profound autism” — and it’s one being embraced by an increasing number of autism researchers and advocates.

On Monday, The Lancet published a special report by The Lancet Commission on the Future of Care and Clinical Research in Autism, of which I am a member. In the report, several colleagues and I introduce the term profound autism to highlight the needs of people who cannot speak for themselves.

The term profound autism is intended to describe autistic people who are likely to need 24-hour support throughout their lives. The goal of introducing this designation is to provide more specificity to the extremely broad autism spectrum to equip parents, service providers, and the public with the language necessary to ensure that individuals with autism receive the accommodations and interventions they need. Concise, meaningful terms like profound autism will simplify the process of determining appropriate care, leading to quicker and more forceful interventions.

As both an autism advocate and mother of a 24-year-old daughter with profound autism, I am confident that applying this term appropriately will make a positive difference in many lives.

No two diagnoses of autism look the same. Some of those living with autism engage in destructive or self-injurious behavior; others do not. Some have intellectual disabilities; others are star students. Some are unable to perform basic tasks like brushing their teeth and getting dressed; others can live fully independent lives.

A few days before The Lancet commission report was published, the Centers for Disease Control and Prevention announced that autism rates are once again on the rise. Among 8-year-old children, 1 in 44 are diagnosed with autism, up from the CDC’s estimate of 1 in 54 children in March 2020. The uptick in diagnoses makes the need to provide more specificity to the broad autism spectrum feel especially urgent, particularly given that the CDC reported that more than 58% of 8-year-olds with autism had intellectual disabilities or borderline intellectual disabilities.

My daughter Jodie resides in a group living facility that offers medical and special education services for people who require a very intensive level of support. She often has seizures and struggles to perform everyday tasks like talking, expressing her needs and wants, and adjusting to even the slightest changes in her routine — a reality that made the pandemic especially challenging for her. Growing up, I also witnessed the many challenges my parents faced while trying to help my brother, Steven, who also has what would now be called profound autism.

Jodie’s long road to receiving the right interventions is a prime example of why specific language is needed to describe autism. For years, she had a miserable experience in mainstreaming programs that sought to give her the same school experience as higher-functioning special needs students. It wasn’t until we found the live-in program that she began to thrive.

I am grateful that after many difficult years I no longer must constantly fight to make it known that Jodie’s needs are far different from individuals on the high-functioning end of the spectrum who are more commonly depicted in the media (think of characters on shows including “The Good Doctor” and “Atypical”). The dominant presence of this type of autism in the media — which is often amplified on social media by higher-functioning individuals with autism — has led to a widespread misunderstanding about what having autism even means.

While my family’s day-to-day struggles have lessened, that hasn’t happened for many others who are suffering because so many people in society fail to understand how the needs and abilities of people with autism can vary so widely. This was illustrated to me earlier this year when a 4-year-old nonverbal autistic boy was kicked off a Spirit Airlines flight for not wearing a mask, despite having a doctor’s note exempting him due to his condition. In advocating for his son, the father was told that his son’s autism was “not a disability.”

Anyone who thinks autism isn’t a disability should spend a day with my daughter.

Those who eschew labels and instead proffer the notion that autism is just an alternative way of being have created a world in which it is increasingly difficult to communicate the needs of individuals who require substantial support to thrive — or even just survive. Mainstream autism advocacy is increasingly focused on more independent individuals, which leaves people at the more profound end of the spectrum forgotten and misunderstood.

The solution proposed by those who oppose labels — explaining how autism manifests itself without applying a label — assumes that we live in a world where it is always feasible for a stressed-out parent to recite a laundry list of specific symptoms and behaviors, or one in which members of the public always have an ideal reaction to these explanations.

Catherine Lord, a professor of psychiatry at UCLA’s Center for Autism Research and Treatment who co-chaired The Lancet commission, has stated that useful categories like profound autism can bring attention to the different needs of different people. For those who bristle at the use of labels to describe autism, Lord’s point is vital to understand: The term profound autism does not seek to demean individuals in this group, nor does it seek to invalidate the experiences of those not in it. Instead, profound autism is meant to call attention to the unique needs of this vulnerable, underserved community comprised of people who are minimally verbal or nonverbal and will require round-the-clock care throughout their lives.

The events of the pandemic have reinforced the fact that individuals with profound autism require specialized interventions. Over the past year, the Autism Science Foundation, which I lead, has heard from many families who were — and still are — struggling to adapt to a world beset by Covid-19. Their concerns include everything from struggles regarding mask wearing and social distancing to program closures resulting in endless, unstructured days, and skill regression due to school closures and lack of access to online learning. We even heard from some families who said they were barred from accompanying their nonverbal autistic children to the hospital.

We should be seeking to make it easier for these families to articulate their child’s needs, not harder. Normalizing the term profound autism will help families more efficiently access the supports and services they need, giving people the best chance to live fulfilling lives with dignity.

Alison Singer is co-founder and president of the Autism Science Foundation and the mother of a child with profound autism.