Why Identity-First Language Matters to Autistic Individuals

Why Identity-First Language Matters to Autistic Individuals

By Ronit Molko, Ph.D., BCBA-D

Are there autistic individuals in your life? Or are they people with autism? This is a critical distinction and a topic of debate in the autism community, one which recognizes that words matter and shape how we think.

Half a century ago, people with developmental disabilities were referred to using all kinds of pejorative terms. For many in the autism community, the sting of those dehumanizing terms lingers and informs their opinions on how they choose to identify themselves.

The debate happens between person-first language (people with autism) and identity-first language (autistic people). For many years, and especially in the professional and scientific communities, person-first language that acknowledges a person’s humanity first and their identity second is preferred and recommended.

The person-first preference is easy to understand. We are all people and individuals before we are our condition. Person-first language acknowledges that a person is not their condition. The condition is part of them but doesn’t define them.

But person-first language can feel cumbersome and stilted, and often offensive, especially to those at whom it is directed. And now, as we approach 25 years since the autism diagnosis became more prevalent and awareness began to increase, we have a large group of autistic adults to inform us about growing up with autism and how they see themselves in the world.

I have discussed this with many autistic individuals and their parents to better understand what this issue means to them. Many of these young adults, who often refer to themselves as self-advocates, describe that their autism is core to their identity and how they have known themselves since birth. Referring to them as a “person with autism” negates this. Many have said to me that using person-first language is designed to make me feel better, but actually dishonors who they are.

More to the point, autism is not an accusation, but a statement of fact. Autism is an inherent part of a person’s identity, just as gay, or Jewish, or female are. Before the general population can understand autism as a condition that bestows strengths as well as challenges, those in the autistic community must adopt this identity-first point of view and make their language reinforce that mindset.

In the 1960s, African Americans demanded to be described as “black,” as part of the Black Power movement. It was a point of pride, rather than a label of oppression that had scarred them for 200 years. People began chanting “Say it loud; I’m black and proud!” With this shift, blackness became and remains a core aspect of that community’s identity. Those activists restored power, and thus humanity, to “black” as an identifier.

Using the term “autistic person” or “autistic individual,” as I do in my written and oral presentations, affirms the value of the autistic identity. Individuals don’t have autism, the way they have the flu, they are autistic, a condition that describes the wiring of their brain and suggests the unique, complex and interesting individual they are.

ABA

Looking Ahead to Next Evolution of ABA

Most professionals and families in the autism community would agree that over the past 30 years, ABA has served autistic individuals well, providing many of the skills and supports necessary to improve functioning and enable individuals to participate more fully at school and within family systems. So inevitably, it is time to evolve.

All companies and industries evolve or wither. Forces of change—internal and external—demand new approaches, innovative solutions, or a new direction. Successful companies and industries are always thinking about what is next.

Businesses generally follow an S-curve in their growth. After a period of investment and company-building, there is rapid revenue growth as the marketplace becomes aware of the business’s products and services and recognizes its relevance. Then the market catches up and growth stagnates unless the company innovates. When it does, it reaps the benefit of accelerated growth again.

The image below illustrates how this works.

I believe the autism services industry is at the inflection point of the S-curve. With great benefit to many thousands of people with autism spectrum disorders, ABA services are considered by most researchers, payors, legislators, and service providers to be the gold standard of treatment. In the process, and with the heightened demand for intervention, the delivery of ABA services has transformed into an industry. With over 30 financial investments in autism companies last year alone, the industry is quickly reshaping as investors look to scale services, leverage technology, and improve infrastructure and processes. But storm clouds are gathering.

We face a growing population of autistic adults who lack the necessary skills to live independently and whose parents are aging, unable to care for them much longer. What’s more, a growing number of children with autism are coming of age, many of whom lack the skills necessary for independent living, finding and maintaining employment, and forming intimate relationships. If the goal of the autism services industry is to prepare individuals with autism to live their lives as successfully as possible, there is a great deal of room for improvement.

An external force is at work as well and could be the main catalyst for evolution: third-party payers. Absent a coherent set of outcomes from the industry itself, insurance companies are beginning to dictate the rules of conduct in autism services, even though many lack the in-depth knowledge and expertise to do so. The best interest of autistic individuals risks getting lost in the maelstrom.

If we look at our industry objectively, we see one driven by short-term outcomes and often narrow commercial interests, rather than one united by a desire to discover and invest in the approaches that result in the best long-term outcomes for the population we serve. A regrettable lack of data sharing reduces industry-wide knowledge. Furthermore, a lack of universal standards and common measurements of outcomes stymies innovation across the industry. Without those clearly-defined, measurable outcomes that serve the long-term needs of our clients, we’re left with payors developing often poorly-conceived, short-term outcome values that fail to support the programs needed for adults so they can function independently.

As an industry whose purpose is humanitarian, we have our work cut out for us. We can stagnate and wither on the S-curve, or as an industry, we can innovate through the present challenges and reach a new age of growth, both in scale and quality of service. Any well-intentioned person in this industry prefers the latter. So, the questions as we look towards the future of our industry are: how willing are we to reject misaligned commercial interests and resist the temptation of shortsighted results? Can we instead work together, share information, develop common outcomes, and improve the results for our clients?

If we’re going to do it, we have to do it now.

 

For more on the future of ABA and autism services, check out my book, Autism Matters.