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New ASU graduate was taught from early age to advocate for herself

ASU grad Amber Cook sees art studies degree leading to an architecture career.
April 19, 2021

Amber Cook wants a career in architecture to design accessible housing

Editor's note: This story is part of a series of profiles of notable spring 2021 graduates.

Amber Cook’s parents taught her to advocate for herself — a skill that has served her well while in college. She is graduating from Arizona State University this semester with a degree in art studies from the Herberger Institute for Design and the Arts, with a minor in design studies.

Cook, who is from St. Michaels, on the Navajo reservation, was born with cerebral palsy. She uses a wheelchair, has a slight speech impediment and some limitations in her hands.

“My parents fought to raise me to be as independent as I can be and to have just as much equal opportunity as everyone else,” she said.

A woman wearing a graduation gown and a big smile sits in a wheelchair outside a building

Amber Cook is graduating with a degree in art studies and would like a career in architecture, designing accessible housing. Photo courtesy of Amber Cook

Her mother worked for the Arizona Department of Education’s Parent Information Network, a service for families with special-needs children.

“So my mother and I would be a mother-daughter advocate team, doing panels and keynote speeches,” she said.

“Now that I’m an adult, when schools or businesses request my voice or appearance, I do it on my own.”

At ASU, she advocated for herself during her first design studio. After a low grade at the start of her class, she said her ability to complete the work was questioned.

“This was my first time in a design studio and it was their first time having a student with a physical disability. So it was a learning process for all of us,” Cook said.

“I wanted to prove that I am capable, so I put in double the effort and time and finished the class with a 94%.”

Cook, who served as president of the Herberger Institute Student Council, answered some questions from ASU News:

Question: Why did you choose ASU?

Answer: It was the family alma mater. I have two aunts who graduated from ASU.

Q: What was your “aha” moment when you realized you wanted to study the field you majored in?

A: I have always had a passion for art, since I was a kid. Plus, my stepfather was an artist and he was a major influence on my life. Honestly, this is a pit stop along my educational path to earning a master’s of architecture. My goal is to start my own architecture firm, specializing in special accommodations and suitable living and access for people with disabilities.

Q: What’s something you learned at ASU that surprised you or changed your perspective?

A: Pay attention. Ask questions. Seek help if needed. And build relationships.

Q: What advice would you give to an incoming freshman at ASU?

A: My advice would be to break out of your shell and speak up. Nothing will get done and no one will know what you need until you do. Everyone is different and no one is perfect.

Q: What was your favorite spot on campus, whether for studying, meeting friends or just thinking about life?

A: I never really had a certain spot because I was always in motion.

Q: What are your plans after graduation?

A: Take a break, with a semester off to either do an internship or work on the book I’m writing about my life and experiences.

Q: What’s the most important thing you want people to know about you?

A: That I’m still human, despite having a disability. I still have dreams, goals and desires like everyone else, and that I’m living my life for me.

Q: If someone gave you $40 million to solve one problem on our planet, what would you tackle?

A: I think it would have to do with going green, as in revitalization of the natural environment and our ecosystem. I’m Native American, so we’re taught to care about the Earth and the essentials for survival. So more planting, which equals more fresh food, less health problems, cleaner air, more precipitation and more animals.

Mary Beth Faller

Reporter , ASU News

480-727-4503

 
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Why Latino children tend to be diagnosed with autism later than other children

April 19, 2021

ASU researcher says social workers are in a prime position to help support minority children with autism

Autism does not discriminate. The complex, lifelong developmental disability affects people of all races and socioeconomic backgrounds, yet the support and resources available to children varies across cultures.

About 1 in 54 children has been identified with autism spectrum disorder (ASD) according to the CDC, and research shows that it’s critical to diagnose children as early as possible to enhance children’s social communication and reduce challenging behaviors. But when it comes to Latino children in the United States, Assistant Professor Kristina Lopez in Arizona State University's School of Social Work says they’re often overlooked, have a delayed diagnosis and are provided limited access to services.  

Kristina Lopez

Kristina Lopez 

In her research, Lopez explores disparities in early diagnosis and services among underserved children and families including low-income, limited-education and racial/ethnic minorities, specifically in Latino children with autism.

Her dedication to understand the complex health needs among children and implement improvements in the search for culturally informed providers and resources stems from the experiences of her own developmental disability. For World Autism Month, ASU News spoke with Lopez about the areas of opportunity for social workers to address disparities in autism diagnosis and treatment.

Question: What can you share about your background and why your line of research is particularly personal?

Answer: I am a fifth-generation Mexican-American and a first-generation college student. Education was a top priority for me as I saw it as a pathway to securing a career in which I could impact systems of care that my family and I encountered through the management of my own developmental disability, epilepsy.

We experienced multiple instances of bias that included a pushout experience from my school once I was diagnosed and multiple doctors assuming my parents did not understand the medical system enough to navigate it to support my care. In my professional experience working in special education and early intervention, I witnessed many instances where racial/ethnic minority children and their families were discriminated against by the very systems set up to support them in their care. It was frustrating to observe the bias and discrimination without being able to make a difference in my positions at the time.

Thus, I set out to develop a career where I could effect change at the individual, provider, community, organizational and policy levels. My research is important, as it allows me to do exactly this type of work. At the individual level, the intervention work directly impacts families by helping enhance their knowledge of their children’s autism, their advocacy skills to find and receive more services, and the efficacy and use of evidence-based strategies. 

Q: What makes social workers unique in the effort to identify and support children with autism?

A: Social workers are uniquely positioned in the effort to identify and support children with autism, particularly those who are from underserved communities, because social workers often serve children from low-income or ethnic minority groups who may be overlooked in many systems of care. Social workers are more likely to be trained to be aware of differences in race, ethnicity, culture, income, gender and ability as well as biases that exist within systems of care that produce disparities in access to diagnosis and treatment services. However, few social workers have training on autism. If more social work programs included training in autism, social workers would be even more prepared to support the identification of children with autism and provide families with information and community resources to support access to autism services.

Q: Why was it important for you to look at the effect of developmental disabilities across different groups?

A: It was important for me to explore the impact of developmental disabilities, such as autism, among children and families across racial groups and socioeconomic levels because there are significant and persistent delays in prevalence rates of autism and access to quality care among children and families across racial/ethnic groups and socioeconomic levels. Research has made it clear that it is critical to diagnose children as early as possible, which can actually be reliably done by 12 months, and follow-up with early intervention to enhance children’s social communication and reduce their challenging behaviors. However, children from diverse racial/ethnic groups and low socioeconomic levels often have a delayed diagnosis, limited access to services and/or poor-quality services.

For instance, I focus primarily on LatinxLatinx is the gender-neutral term many prefer to use for the Latino community. children with autism and their families. Despite increased identification of autism among Latinx children over the past decade, they remain less likely to be identified with autism compared to Black and non-Latinx white children. If they are identified, they receive a later diagnosis and reduced quality of care, leaving them susceptible to poorer outcomes. Therefore, it is important to better understand the needs of Latinx children with autism and their families in order to enhance culturally informed outreach methods to improve early screening, diagnosis and intervention.

Q: What are the barriers in how children of different races, ethnicities and income levels diagnosed with autism are treated?

A: The barriers exist at the individual, provider, organizational, community and policy levels. 

For instance, at the individual level, parents who do not speak English are more likely to struggle with accessing diagnostic services. 

At the provider level, there are implicit biases that may interfere in the referral and diagnostic process, such as when a provider assumes a young child who is from a Spanish-speaking household has delayed speech because they are being exposed to Spanish rather than English only. This provider may then opt to tell a parent the child is “confused,” instead of referring the child for a needed autism evaluation. The child may then not be referred until they are older, losing critical early intervention time. 

At the community level, a couple of barriers include community perceptions of health services and mistrust in service providers.

Lastly, at the policy level, barriers are embedded across state and federal health, mental health and education policies that determine autism screening timelines and requirements, access to and cost of diagnosis and treatments, and level of care and support for children and families.

Q: What are some of the successful techniques that you’ve used to help the Latino community understand an autism diagnosis and the services available to them?

A: My colleagues and I have developed an education program for Latinx families of children with autism, Parents Taking Action (PTA) or Padres en Acción. In PTA a promotora de salud (community health worker) model is used, whereby Latina mothers of autistic children are trained to deliver information about autism, advocacy, evidence-based techniques to enhance children’s social communication and self-care strategies to improve their children’s social communication to other Latina mothers of young children with autism. The materials used in PTA include dichos, or common Spanish sayings; audio-recorded novelas, or short stories, narrated by actors; and video demonstrations, including Latina mothers and children, of the evidence-based techniques, as well as bilingual social communication visual support tools.

Q: What other cultural challenges exist, and how can those be overcome?

A: Other cultural challenges include the implicit biases providers may have against racial/ethnic minority groups. To address these challenges, it is important to train all service providers in the practices of cultural humility and antiracism. Cultural humility and antiracism necessitates learning about other cultures through active listening of their experiences, identifying one’s own biases, and critical self-reflection to better understand and address them. We challenge all social workers to be strategic in incorporating culturally relevant frameworks into their research and practice. In doing so, providers such as social workers can be prepared to address the multitude of cultural challenges that must be overcome to support racial/ethnic minority children directly as well as strategize to dismantle the forces that limit racial/ethnic minority children’s access to autism diagnosis and treatment services.

Top photo: iStock image.

Media Relations Officer , Media Relations and Strategic Communications