ABILENE, Texas (BigCountryHomepage.com) – The month of April has long been known as “Autism Awareness Month,” but there’s been a recent national push to change awareness to acceptance. In the Big Country, local parents of diagnosed autistic children share how the change may impact them, and a new nonprofit explains why the change.
National Autism Awareness Month began in 1970 and a puzzle piece symbol became synonymous with the movement in 1999, although both were first made popular in the United Kingdom. More recently, there’s been a push to change both the name and the associated symbol.
Hailey Frazier, an Abilene-based counselor with Grounded Roots Family Development Center and representing Spectrum Connection Abilene, specializes in helping families with members who may have autism or ADHD (attention-deficit/ hyperactivity disorder), but her work doesn’t stop there. She said she helps support families in any way she can.
Coming to our station to meet with BCH, Frazier explained that we need to be listening to our autistic voices.
“Having acceptance means being inclusive,” Frazier expanded. “Not only that, but listening to the voices of those living with autism so that we can learn from their unique perspectives and include them in all aspects of society.”
According to Good Autism School, the puzzle piece symbol, marking Autism Awareness Month was addressed five years ago by the Autism Research Journal in 2018. Understanding the why, the change from awareness to acceptance began to be officially changed in 2021. But this is probably the first you’re hearing of these changes, isn’t it?
“The puzzle piece is really falling out of favor with those individuals who actually have autism because the puzzle piece, for so long, symbolized a piece missing. And there absolutely is not a piece missing. These people who have autism are complete and whole and unique, and should be celebrated as such,” urged Frazier.
The images below are courtesy of Vision for Life & Success and The University of Texas at Austin Inventors Program.
Instead of the puzzle piece, advocates are using a rainbow infinity symbol to mark the movement.
Along with getting rid of ‘awareness’ and the puzzle piece associated with Autism Acceptance Month, there’s been a clear change of pace in how disabilities are addressed altogether. For instance, the term “special needs” has been especially stigmatized in a very similar way the term “handicapped” has.
According to a 2016 study, “’Special needs’ is an ineffective euphemism” – from the universities of Wisconsin-Madison and Kansas – published by the National Library of Medicine, the term was already a dysphemism (euphemism with negative intention) and was predicted to become a slur in the future. In the seven years since, that has certainly become a reality. The best way to understand that it is an offensive term is to make it be known that a person with disabilities has needs, just as everyone else with neurotypical or complete physical capabilities does. Their needs are every bit as valid.
“You’re probably hard-pressed right now to find someone who doesn’t know what autism is or know someone affected by autism. But acceptance goes a step beyond that; to say that this person has this whole unique and wonderful set of skills and abilities,” Frazier clued in. She took a thoughtful pause and said, “autistic people just have this great creativity and this great ability to do things that neurotypical people, even, aren’t able to do sometimes.”
Missed the shortened version that ran on TV? Watch it here:
Meet Brianna Arrieta and her two little ones, 5-year-old Rhea and 4-year-old Phoenix. At 17 months old, Arrieta told BCH Phoenix was one of the youngest children to be diagnosed non-verbal autistic by Abilene specialist, Dr. Russell Roger.
This Wylie area mom said she knew from the beginning that Phoenix was not neurotypical.
“Since he was born, he needed to constantly be in his bouncer, he needed constantly to be in his swing, he needed to constantly be patted on the butt. But for him, patting him on the butt – like gently – wasn’t doing it,” Arrieta looked back. “He was still crying and screaming, and then you kind of do it a little bit harder and then he’d be calm. Everybody is like, ‘are you okay? Is he okay? You’re, like, hitting him hard!’ And we’re really not, it’s just the echo of his diaper.”
For a while, Arrieta said her pediatrician insisted Phoenix was just a colicky baby. But a year earlier, her daughter, Rhea, had colic and this was a whole different ballgame. She said he would very easily get overstimulated by sights and sounds, and the mushy textures of baby foods would bother him. Beyond that, he had to constantly be moving – also known as stimming.
Getting that diagnosis gave Arrieta peace of mind and a chance to redirect how she might react to her baby boy’s actions. For the past 2-and-a-half years, she’s been able to get to know her son in a different way than she’s gotten to know her daughter.
“He’s very, very stubborn. If he wants to do something, he’ll do it. No matter what, you cannot stop him,” said Arrieta of her son’s determined spirit. She continued to marvel at her 4-year-old, “He knows how to spell a lot of stuff – whatever he sees, he will spell it.”
Today, to adapt to the regular needs of Phoenix’s, he goes to speech therapy, occupational therapy, and behavioral therapy. Before his diagnosis, Arrieta said he never babbled as most neurotypical babies do and just this year, he’s began to show initiative in learning to talk. Although, for now, he mostly repeats what he hears.
Arrieta said she gets her strength from her mom and grandmother, often lending a hand with both children. She spoke to her daughter’s excellent big sister instincts, including how Rhea will look after little brother and explain to strangers, who try to strike a conversation with Phoenix, that he doesn’t talk.
“He goes to school just like me,” Rhea volunteered.
About 15 miles down the road, BCH met up with Baird mom, Alyssa Johnson at Café 79510 in Clyde. Johnson is the proud mom to her three children: Todd, Trystan, and Azalea.
This Autism Acceptance Month, Johnson said, is especially important to her family because Trystan was diagnosed with autism this time last year.
Johnson is a single mom who works at a Clyde pharmacy and has a visible admiration for her almost 8-year-old daughter.
“She tries her best to do the things that the other kids do. She just might use little sister to get there… She wants to do those things. We’re just seeing it be done in different ways,” Johnson described her middle child, Trystan.
Johnson continued to talk about her daughter with a proud gleam in her eyes, “She does show her compassion. She may struggle with interacting with people sometimes, but when you get her along with an animal, that’s where she shines especially.”
Although now at more peace with the way Johnson’s family works, it didn’t always come so easily. As a young woman, she said having children and being a great mom was important to her.
“I had no idea in that time, that when you’re thinking about babies and all the fun clothes, that they’re going to grow up into these individual kids… They may have a challenge that you really don’t expect,” revealed Johnson.
It was several small things that led to Trystan’s diagnosis. At one point, Johnson thought maybe she needed glasses, then perhaps she could have been hard of hearing. Finally, it was filling out a questionnaire at the doctor’s office which prompted this mom to seek a second opinion.
“Honestly, I had never thought about it,” Johnson said. “I knew that there was something, maybe, going on. But it had never occurred to me that that was the answer to our situation.”
Finally, in April 2022, Johnson said Trystan was diagnosed through Turning Point Counseling in Abilene.
“You get this diagnosis and then it’s almost like, ‘well have fun!’ Well, what do I do next? So, one of the things that has been difficult for us is that we’re relatively new in this journey, but there’s been a lot of time in the beginning that we didn’t know what we were doing.”
As Johnson suggested, a diagnosis doesn’t exactly solve a problem. For some time, she had to grapple with figuring out the next steps to take; what therapies are offered and what therapies Trystan may actually need.
“I think it’s been helpful, not even just for her to have her diagnosis, but even for to me to look at my own life. I’m like, ‘okay, these things make sense now,’” explained Johnson. “It’s been really helpful with us to be able to see some of the reasons why we have some of these behaviors.”
In this past year, Johnson and her family have been able to use Trystan’s diagnosis to work with doctors to understand her a little better. Johnson said her daughter goes to occupational and speech therapies to help her get to where she needs to be, on top of her extracurricular activities like her siblings.
While, at times, Trystan’s older brother can have a difficult time understanding her diagnosis, Johnson said she thinks her youngest is best with Trystan because she’s more used to those behaviors as the younger sibling.
“Little sister is the one that actually brings her out of her shell,” Johnson beamed.
As a working single parent, Johnson said she couldn’t imagine going through life without her support system. She said her parents and sisters helps with her little ones, and her younger sister helps explain some of Trystan’s behaviors because she’s studied childhood education.
BCH asked Johnson, “What advice would you give other parents with children who have autism?”
Johnson took just a second to sort her thoughts, took a reflective pause and with a hint of relief said, “Give yourself grace. That is one thing, I think, that I struggled with… I may not understand what she’s going through, but that doesn’t mean that it’s not valid and that doesn’t mean it’s not valid that I’m struggling with it as well.”
For neurotypical people who may not have much experience with people with autism or disabilities, Johnson told BCH she’d just like patience. While Trystan feels completely comfortable at home, and can seem ‘typical’ in public, she can often get very nervous while out and about.
“Just because she (Trystan) is putting on a good show, that doesn’t mean that there’s not a lot of struggle hiding behind that,” shared Johnson.
As for the switch from Autism Awareness Month to Autism Acceptance Month, Johnson said because it’s all so new to her, she believes awareness is still an issue. However, what she’d like to come from either is more help for parents and families with autistic children to learn how families could best navigate through the diagnosis.
Spectrum Connection Abilene, a nonprofit for people affected by autism, wants to help do just that. Founded in January 2022, Spectrum Connection has been able to provide more educational opportunities for families and host fundraisers. Most recently was the nonprofit’s 2nd Annual Walk for Autism at Redbud Park on April 1.
In addition to the Walk for Autism, a portion of the sales of specials at The Local throughout the month of April will go to Spectrum Connection’s mission. The nonprofit will also be a featured organization of this year’s Abilene Gives – which will be held Tuesday, May 2. Follow this link to get in touch with Spectrum Connection and learn more about the organization.
“Acceptance to me means finding those individuals and supporting them, giving them resources, giving other people around them education to help them thrive in our neurotypical world,” Frazier added.