It’s said that God created autism to help offset the excessive number of boring people on earth. While humorous in its approach, the intent of this saying is clear – individuals with autism should not be pitied, but celebrated, for their differences.
Nowhere is this spirit more embodied than in Carlsbad’s own Visions of Autism Advocacy Group, headed up by board president Kim Sanchez. “Our goal is to educate the entire community about what autism is and what individuals with autism can and cannot do. We want to get rid of the stereotypes about autism,” declared Sanchez .
Visions of Autism (VOA) was formed in February of 2016, a small nonprofit with just four initial board members. Sanchez, a special education teacher who was not diagnosed as autistic until an adult, remembers well how the idea for the group was first conceived.
“The school system works great, but the schools can only do so much,” she recalled. “There was nothing in the community for those with autism and their families. I wanted to help . . . I wanted to do more.”
Families of autistic children in Carlsbad often travel to Roswell, Lubbock, and even Albuquerque to get additional therapy services or activities, which can be both expensive and exhausting for everyone. Sanchez’s husband, Eddie, saw her frustration and suggested she start a nonprofit to meet this need within the community. The VOA’s mission, according to its website, is to bring awareness, education, acceptance, and advocacy about autism to the community of Carlsbad, with an emphasis on enriching and empowering the lives of individuals with autism.
“We want people with autism to not feel like an outcast,” added Kim Sanchez.
So what exactly is autism? Autism falls under the broad term of autism spectrum disorders (ASD), which includes not only autism, but also Asperger’s syndrome, Rett’s disorder, childhood disintegrative disorder, and pervasive disintegrative disorder – not otherwise specified. According to the Centers for Disease Control and Prevention (CDC), ASD is a developmental disability that can cause varying levels of social, communication and behavioral challenges. ASD occurs in 1 in 68 children in the United States, with about five boys affected for every one girl. Individuals with ASD can range from gifted or highly functional to severely challenged or noncommunicative, with each case of ASD unique in its symptoms. As Stephen Shore once said, “If you’ve met one individual with autism, you’ve met one individual with autism”.
The first recorded case of ASD was in 1801, though it was not until 1943 that child psychiatrist Leo Kanner first defined autism by name, deriving the term from the Greek word autos meaning “self”, referring to the private world that an individual with ASD may seem to exist in at times. Children with ASD may avoid eye contact; have trouble relating or talking to others; repeat actions or words over and over again; have unusual reactions to the way things look, smell, feel, sound, or taste; or have trouble adapting to even small changes to a routine. In the past, individuals with ASD were often mistakenly diagnosed with mental retardation or schizophrenia, mainly because they would often exhibit meltdowns or act out due to an inability to express their needs or frustrations in a “normal” fashion. While the remnants of these stereotypes remain, modern autism research and patient advocacy groups have led the push to use alternative methods to test people with ASD, to presume intelligence and facilitate a variety of means of communication as part of a renewed respect for ASD individuals. As explained by the Autism Treatment Centers of America, “a child with autism is not ignoring you, but simply waiting for you to enter their world.”
Today, children may be diagnosed with ASD as young as two or three years of age, though many may not be recognized as exhibiting signs of ASD until starting school. Following diagnosis, a variety of school-based therapy services are provided. Outside the school system, though, is where services for ASD individuals and their families often is lacking, both through childhood and beyond. It is this gap in care and support that VOA is attempting to fill.
While most new organizations are still deciding on their t-shirt design, VOA has already accomplished a great deal towards their initial goals in just over a year. They hosted a First Responders’ Training in 2016 taught by Dr. Rich Mancil, the Executive Director of Autism Learning Partners. Individuals attending the course were taught about what to look for and how to recognize and respond to individuals with ASD during emergency situations. The training had over 75 attendees, including dispatchers; city, county, and state police; sheriff’s officers; and fire personnel.
According to Dr. Mancil, who teaches the course throughout the southwest, the Carlsbad VOA training was “the biggest turnout he had ever seen.” After the training, several first responders mentioned to Sanchez how, looking back on a few past situations, they wished they knew what they had just learned now and wondered whether things might have turned out differently.
The initial VOA First Responders’ Training was so successful that, upon request, organizers are busy planning another one. On a related note, the VOA is also working with police dispatch on developing alert forms for families with ASD individuals. ASD adults, parents, or caregivers would fill out the forms and provide to the dispatchers. Then, in the event of an emergency, responders would have information on what behaviors might trigger a certain reaction (e.g., loud sirens trigger a meltdown or flashing lights cause individual to stop talking) and possible ways to handle these situations.
Other successes for the VOA have included family outings, Christmas parties, golf fundraisers, and a successful United Way Emerging Community Needs Grant. In addition, the VOA, with the continuing help of Dr. Mancil, is working on organizing a way for caregivers to get the autism services they need here in Carlsbad, which may result in obtaining a full-time behavioral therapist for the community so families no longer have to travel for additional services. Also, the VOA, in conjunction with New Mexico State University – Carlsbad (NMSU-C), is developing a non-credit introductory course entitled “Visions of Autism” for adults with ASD, their families, and interested individuals.
According to Jeff Dunaway, Director of Community Education at NMSU-C, the class will educate attendees about what ASD is, how families and individuals can better cope living with the disorder, and invite participants to join the Carlsbad VOA. Finally, Sanchez’s “pride and joy” is the VOA summer program, which just completed its second successful season. The program, which is free for all participants thanks to fundraisers and donations, promotes community interaction and social skills for ASD individuals; activities include going to movies, restaurants, the Living Desert Zoo, and bowling.
“It’s good that parents make their child comfortable, but you still need to push them a little out of their comfort zone and teach them to adapt to their environment, too,” Sanchez beamed.
If it sounds like the VOA has already accomplished a lot, according to Sanchez, they are just getting started. She would like a building, a sort of clubhouse, where ASD individuals have a place to hang out and visit with fun activities and calming places. She dreams of a world where discrimination and stereotyping is gone completely; a world where we, as a community, build people up and help make ASD individuals self-sufficient. In closing, she simply asks us, no matter what our background, to “not judge or be close-minded. It’s okay to ask questions. Better yet, come join us and see our world”.
The VOA meets the first Thursday of every month at Grace House, 2412 Tulip Street, from 5-6pm. Following the main meeting, a ASD support group meeting for families and caregivers takes place from 6-7pm. Kim Sanchez can be reached at 575-302-5288 or at firstname.lastname@example.org. More information about VOA can also be found at visionsofautism.org, on Facebook, and on Instagram.