Identity First VS People First

By Self Advocacy, Uncategorized No Comments

Disclaimer: examples of ableist language are used

Language is a very powerful tool in society. It shapes how we think about and understand our world and the people in it. As society continues to evolve, so does how we communicate, especially when it comes to how we view our fellow man—to be more specific, the disenfranchised, those viewed as lesser. For example, calling someone “an autistic” is different than saying someone “is autistic” or “has autism” which is also different from “is a person with autism” or “is afflicted with autism” or “suffering with autism”.

It seems obvious no one would ever think to refer to a person saying “she is cancerous”; they’d say “she has cancer”. Originally this stood out to me because calling someone cancerous seems to clearly be equating/identifying a person with cancer in a negative way. This term is known as person-first language. Person-first language (aka people-first language, or PFL), while an attempt to move toward humanizing people, has its own issues and is certainly not a one-size-fits-all solution. In person-first language, I am “a person with autism”. This is not, however, how I refer to myself. Despite my opinions on the term, I can understand why the person-first movement started and why it is used by medical professionals, including my colleagues. I also believe that, as self-advocates, it is important that we acknowledge this term’s significance in our movement’s history.

Before its present use today, person-first language originally started in the AIDS crisis. In 1983, a group of activists stood up at a Colorado health conference and drafted a declaration known today as the Denver Principles, which included the following statement:

We condemn attempts to label us as “victims,” a term which implies defeat, and we are only occasionally “patients,” a term which implies passivity, helplessness, and dependence upon the care of others. We are “People With AIDS.”

And so, person-first language was born in a bid to refuse to be labelled a “victim” during a harrowing medical crisis. It was insightful, brave, and RIGHT. Even better, doctors at the time took notice as more and more research papers referred to “people” instead of “victims” or “patients”. For what was shown in studies at the time, person-first language was helping change perceptions about AIDS for the better.

Early in the disability rights movement it was common for a person’s disability or medical condition to supersede a person’s identity in a very objectifying way. Older historical terms included words such as “cripple”, “invalid”, and “cretin” were all very much used in noun form to supersede any ideas of personhood. We weren’t seen as people. We were seen as imperfect. Broken. Wrong. It was “that kid with cerebral palsy, Ben”, not Ben, who has cerebral palsy. We had no personhood. We were just societal burdens with a pulse.

When you’re referred to by terms like “moron”, “retard”, “idiot”, “imbecile”, and “stupid”, it only makes sense that you’d want to be seen as a person. To see the person first and then the disability. Granted, those terms were all once specific psychological/medical terms and retain a lot of that stigma even today, even though they are often used as generic insults now. In an effort to de-objectify us and to emphasize our humanity – which unfortunately could and can still be quite prejudiced and discriminatory – person-first language was magnified as the politically correct and preferred way to address not just people with AIDS, but people with disabilities as well.

In addition, there was a shift in language in the 1990s when the federal Education for all Handicapped Children Act was renamed the Individuals with Disabilities Education Act. The federal mandated change in terminology reflected a broader deliberation for identifying language. While this change still held stigma, it was a small step in the right direction for that time. However, because of this language change, and the broader cultural shift it represented, medical professionals in the 1990s were quite skittish at using identity-first language. For them, calling someone an autistic person didn’t sound quite right.

But that jargon is not a blanket term for all disabilities. The autistic, blind, and deaf communities haven’t been as affected at the same scale as the communities with intellectual disabilities. While we are still looked at with disdain, in recent times, we haven’t been locked away en masse. My community, the autistic community, seems to be the most passionate about this and with good reason. Despite society’s progress since the 1980s, the population is still by and large reviled, abhorred, and discriminated against by society as a whole, be it consciously or unconsciously. Even pro-autism organizations and events can fall into this, causing us to be seen as an epidemic of tragedies.

A new movement within the disability community is gaining traction by the day. The growing prominence of disabled people proudly accepting their disability as one with their identity and changing the game. Those in the movement, including myself, are saying that our disability shouldn’t be an afterthought. Moreover, our disability is not a bad word. There are many hashtags such as #SayTheWord on Twitter filled with tweets of disabled people who chose identity-first language.

However, at the end of the day, it is a choice. And the community it impacts is not a monolith. Disability touches every demographic imaginable. No two individuals will be impacted in the same way. Their different perspectives and life experiences dictate how they self-identify and their place or lack thereof in the community. It would be hypocritical for one disabled person to dictate another’s identity seeing as that is what the rest of the world is doing to us.

The main rules of thumb I can give for those unsure is as follows. If you are speaking with or about a disabled individual and are unsure of that individual’s preferences, ask them. Much like the autism spectrum itself, each of us is unique and have our own likes and dislikes. One of us may not mind being referred to in PFL, but another may not think so.

Words are important, and how we use them affects others and can also shape our personal and societal outlooks. Using language responsibly is something we should all strive, and it’s impossible to do so without listening, especially to the people you’re talking about and who your words most effect. So, thank you for listening. 

Greta Thunberg in a wearing a parka and beanie at the Columbia Icefield in Jasper National Park.

Autism’s Unsung Heroes

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Most people generally know about autism from the 1988 movie Rain Man. However, what a lot of people don’t know is that the inspiration for Raymond Babbitt, Kim Peek, also had a rare disorder known as FG syndrome. However, this revelation does not diminish from the impact that Dustin Hoffman’s brilliant portrayal on autism as a whole. Indeed, were it not for that movie, autism itself might not be as well-known as it is today, for good or ill. There has been a plethora of unfounded fear and misinformation on autism on the Internet for a long time now. I believe that more attention should be directed towards autistic people themselves.

Temple Grandin (1947)

Temple Gradin, speaking on stage with left hand raised, index finger pointing upward.

Photo by Steve Jurvetson (cc-by-2.0)

In 1988, Temple Grandin was completing her PhD and had already made revolutionary contributions to animal science. The de facto example of successful people on the spectrum, Temple Grandin used to communicate her frustrations by screaming, peeping, and humming. When she was diagnosed at 3, it was advised that she be institutionalized. Her parents disagreed. She has since become a leading force in animal sciences, an accomplished author, and was named as one of TIME Magazine’s “100 Most Influential People.”

Dan Aykroyd (1952)

Closeup photo of Dan Aykroyd smiling.

Photo by Rnunezart (CC BY-SA 4.0)

By the time of Rain Man’s release in 1988, Dan Aykroyd was a comedic superstar, having already been in SNL, The Blues Brothers, and Ghostbusters. As a child, Aykroyd was expelled from two different schools before anyone realized that he had mild autism. Ever since coming out about his diagnosis in 2004, he’s been vocal and honest about his experiences on the spectrum. Aykroyd has had an obsession with ghosts and criminology to the point of studying it in college. According to the actor, it even helped him develop Ray Stantz during filming.

Susan Boyle (1961)

Susan Boyle singing in to mic, wearing black sequin dress.

Photo by Wasforgas (CC BY-SA 3.0)

For years, one of the best-selling Scottish contestants from Britain’s Got Talent believed that she had suffered slight brain damage after complications at birth. She was diagnosed in 2012 before going public in a BBC interview a year later. Given her struggle to control outbursts, this revelation came as a “relief” to her as she finally has a “clearer understanding” of her condition. Though she is still learning about her disability, she believes this will not make any difference to her life as a performer.

Courtney Love (1964)

Courtney Love playing guitar on stage.

Photo by Andrea Fleming (CC BY 2.0)

Yes, really. In 1989, Love was starting her early work with her alternative rock band Hole. The world famous singer/actress/widow of Nirvana frontman Kurt Cobain is on this list, and for good reason. As a child diagnosed at 9 years old, Love struggled behaviorally and academically, and had trouble making friends. While she still struggles with social skills, Love would practice social cues and casual conversations by visiting gay clubs with close friends.

Satoshi Tajiri (1965)

Photo of a young Satoshi Tajiri.The creator of the Pokémon franchise was fascinated by insects as a child to the point that he was nicknamed “Bagu hakase” (Dr. Bug) by other children. Though he confirmed that he is on the spectrum, Tajiri prefers to not talk about it in public, instead choosing to let his many, many accomplishments speak for themselves.

Pikachu may be the mascot, but Tajiri’s favorite Pokémon is actually Poliwag!

Clay Marzo (1989)

Closeup photo of Clay Marzo against a plain black background.

Photo by Adrian Araya (CC BY-NC-SA 2.0)

In school, the Hawaiian surfing prodigy had trouble sitting still, comprehending directions, or understanding what he just read. He’d flap his arms when he was anxious and rub his hands together when he was excited. When his routine was changed, especially if it kept him from the ocean, he would become moody.

Greta Thunberg (2003)

Photo by European Parliament (CC BY 2.0)

The young Swedish activist has gained popularity through her speech at the 2018 United Nations Climate Change Conference. At 11 years old, Greta was diagnosed with autism, OCD, depression, and selective mutism. Not that it has stopped her from working for the environment while still attending school. In fact, her activism, and the changes it has brought, helped her beat her depression. Greta has embraced her disability and considers it her superpower.

Greta Thunberg in a wearing a parka and beanie at the Columbia Icefield in Jasper National Park.

Photo by Mark Ferguson (CC BY-NC-SA 2.0)

How dare I not show a photo of her adorable face!

Quite a list of achievers, no? And there are still more out there. Despite what is shown in media, we are not to be feared. We also do not want to be put on a pedestal as if we are pitiful defects. We do not want to be cured of something that is part of our being since birth. All we want is to be accepted as equals.

Five Things to Do While Waiting for Your Child’s Evaluation

By Autism Screening No Comments

The wait for an appointment to get your child a comprehensive evaluation can be very long and discouraging. As a parent you may have heard or read that the earlier your child receives intervention the better, so now you want to get started ASAP. You may be wondering the best way to help your child while you wait. Here are some suggestions.

1. Access Public Services

All children with disabilities from birth through age 21 are able to receive services through the education system. This is available through a federal law called the Individuals with Disabilities Education Act (IDEA, 2006). This law states that all children with an identified developmental delay or disability should receive a free and appropriate education (FAPE) that includes special education and related services. These public services, offered at no cost to families, do not require that your child already have a diagnosis because public education programs have their own process to determine eligibility.

For Children Under the Age of 3

Contact SoonerStart, Oklahoma’s public early intervention program, for assistance. SoonerStart is designed to meet the needs of families with infants and toddlers with developmental delays by providing individualized, family-centered supports and resources which may include speech-language therapy, occupational therapy, or other services, at no cost to the family.

Click here to locate your county’s SoonerStart office and contact information.

For Children Age 3 and Older

Contact your local school district for an educational evaluation to determine if your child is eligible for special education services. If a child is eligible, an Individualized Education Program (IEP) is developed and services are provided at no cost to parents.

Clinical Evaluation vs. School Evaluation

Many families become confused about why their child might get a diagnosis of autism in a clinical setting, but the school says the child does not qualify for an IEP. On the other hand, some students qualify for an IEP under the educational category of autism, but do not in some cases receive a clinical diagnosis.

  • The goal of a clinical diagnosis of autism is to determine if any treatments or therapies are needed outside of school, and to make sure those treatments will be covered by insurance.
  • The goal of a school evaluation is to determine if a student qualifies for special education services.

2. Access Private Therapy Services

Contact providers who offer clinic-based therapy (speech-language, occupational, physical, or behavioral therapy services)
Your health insurance may cover speech-language and occupational therapies for communication, social, motor and sensory delays and deficits. Contact your insurance provider first to find out which services and providers are covered.

3. Promote Social Interactions with Other Children

If possible, explore enrolling your child in a Head Start program, daycare or Mother’s Day Out program to provide exposure to typical peers and promote social interactions. Another great opportunity is to access the local library for story time which includes other children around the same age singing songs and reading books. This can help your child slowly get used to being around peers without forcing interactions if they are not ready.
Reach out to your friends with children the same age and arrange play dates.

4. Play with Your Child

The best developmental activities for your toddler are the ones they experience through play!

Get down on the floor with your child and play with them, it is free, easy, and builds many skills. The benefits of play are undeniable. Line up, build, play dress up and play with whatever it is that interests your child. If your child wants to roll a car back and forth, do this with them while commenting about the car, the color and how fast a car can go.

Let’s Play Guide

Here is an activity guide for toddlers (age 12-24 months) to provide ideas on ways to engage with your child while working on important developmental skills.

Click here to download our “Let’s Play” Guide

5. Reach Out to Others

You are not alone. One of the best sources of information for learning about community resources and experiences is through networking with other parents who have children with similar needs. They often provide guidance and insights about available resources. Organizations that can help you network:

  • The Oklahoma Family Network connects parents with each other for one to one mentorship and support.
  • AutismOklahoma currently hosts eleven different groups around Oklahoma to provide a way for parents to connect with each other and their community.

While waiting to know whether or not your child is on the autism spectrum can seem like forever, there are many services and supports that you can access that will be very beneficial to your child.



OACF Receives Grant from The Masonic Charity Foundation of Oklahoma

By News No Comments

The Masonic Charity Foundation of Oklahoma has generously granted $25,000 to the Oklahoma Autism Center Foundation (OACF). This gift will help our organization to provide outreach, education, and resource connections to children and families living in rural Oklahoma.  OACF’s mission is to improve the quality of life for Oklahomans with autism spectrum disorder and their families through advocacy, awareness, and support for the Oklahoma Autism Center. 

“We are incredibly grateful to the Masonic Charitable Foundation of Oklahoma for their recognition of our work and support of our mission,” said Emily Scott, Executive Director of OACF. “Their gift will allow children and families to gain access to critical information on the importance of early screenings, early intervention, and connecting with knowledgeable service providers in their local communities.” 

“The assistance and support provided to families, healthcare providers, and educators by the Oklahoma Autism Center is inspiring,” said John Logan, Executive Director of the Masonic Charity Foundation. “We believe that there is a need in our community for such incredible programming and that all children should receive the supports they need to reach their fullest potential.”

Established in 2011 to provide funding for the Oklahoma Autism Center (OAC), the Oklahoma Autism Center Foundation has quickly grown to provide increased support for the OAC’s three main programs, Early Access, Early Foundations, and the MESA Project. The Oklahoma Autism Center provides an inclusive pre-school replication model, autism screenings, student internships, and professional development training for public school educators. In 2019, the Foundation completed a ten-year strategic plan for increasing the OAC and OACF’s outreach statewide to meet the growing demand for autism services for both children and adults. For more information about this plan or the Masonic Charity Foundation of Oklahoma, visit or

Wanda Felty Awarded MetroFamily’s Awesome Mom

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For those of you who know Ms. Felty, it is no surprise that she is receiving an award. For those who might not know her, Wanda has been an important leader in the disability community advocating for people with developmental disabilities and their families. I know her best through my connection with leadership Education in Neurodevelopmental Disabilities (LEND) Program at Child Study Center, OUHSC, as we are both LEND faculty.

With all of her important work professionally, it is great to see her also recognized for being a great mom, too! Congratulations, Wanda Felty! Well deserved.

Click here to read the article and learn more about her journey.