Autism Awareness Month: Holland’s Story

“If I could snap my fingers and be non-autistic, I would not. Autism is part of what I am.”
-Temple Grandin, renowned scientist and animal behaviorist

Autism Awareness Month is observed in April as a way to increase understanding, acceptance, and support of the 3.5 million people worldwide with autism.

While most of us have heard of autism (formally known as autism spectrum disorder), there are many misconceptions and misunderstandings about what it actually is. According to the Autism Society, it is “a complex, lifelong developmental disability that typically appears during early childhood and can impact a person’s social skills, communication, relationships, and self-regulation. Autism is defined by a certain set of behaviors and is a ‘spectrum condition’ that affects people differently and to varying degrees.”

Autism: As Unique as the Individual

That last part is important to remember. While many people with autism share similarities, each individual’s experience is unique and personal.

Just ask Holland Pentz, Quality and Support Specialist for The Independence Center’s (The IC’s) Veteran in Charge (VIC) program. A thoughtful young woman with bright eyes and an inquisitive mind, she’s been with The IC five years.

Upon meeting her, one might notice that she’s a little shy or that direct eye contact makes her uncomfortable. However, it probably wouldn’t occur to most people, at least right away, that she has autism.

That’s why Holland thinks it’s important that others understand that autism truly is a spectrum. “There are a lot of misconceptions people have about it,” she explains. “They tend to think in broader strokes and the image that often comes to mind is someone who is nonverbal, who does a lot of stimming. People really don’t think about those who are on a different point in the spectrum.”

Because symptoms of autism typically manifest before the age of three, most new diagnoses occur in children. Although Holland was diagnosed with attention deficit hyperactivity disorder (ADHD) as a child, she didn’t receive her autism diagnosis until she was 26 years old.

This isn’t uncommon. On average, girls are diagnosed about a year and a half later than boys because girls’ symptoms are more subtle, becoming more apparent in their teen years. Because of this, some girls aren’t diagnosed until adulthood, if ever. This was the case for Holland, whose autism was finally identified when she sought out additional testing from the Thede Family Center (now Whole Kids Company) several years after an incorrect diagnosis of bipolar disorder.

Once she finally got the correct diagnosis, everything started to make more sense. “I mean, it obviously doesn’t change how I look at myself or who I am. But it just changed the game for, really, everything else.”

Life on the Spectrum

Holland sees both challenges and rewards to having autism. One of the challenges, she says is “communicating in a way that the other person can understand. Just making that connection from what’s in my head to what comes out of my mouth.”

Another challenge is the perception that she lacks empathy. “I think it goes back to that communication thing and other people not understanding the ways I show I care. It might not even register to the other person and so they think I don’t have empathy.”

On the other hand, “a lot of the positives are connected to work. My supervisor, Marsha, and the others I work with will mention how I tend to bring a different viewpoint into a discussion or an issue. I’m able to look at it a different way.”

From a personal standpoint, she thinks hyperfixation can also be a positive. Common among people who have ADHD or autism, hyperfixation is extreme focus and complete immersion in something, whether it be a game, a topic, social media, and more. “It might seem odd to others but to me it’s just something I enjoy, you know? I actually feel a little bad for people who don’t have something they love and get kind of obsessive about,” she laughs. “It just seems a little boring.”

When asked what others can do to remove barriers and make interactions easier, Holland sits thoughtfully for a moment before responding. “Just be compassionate. Even if you don’t understand why something may be difficult for a person on the spectrum, give them the same respect you would to anyone else with a disability. Remember that accessibility is just as important to someone with autism as it is to someone in a wheelchair.”

And if someone is uncertain about how to accommodate a person with autism? “Just ask! But do it in a kind way and remember that, hey, you’re talking to a person. I think some people forget that, you know?”

For more information on supports and services for people with autism, contact The IC at 719-471-8181 or email info@the-ic.org.

Whole Kids Company (formally the Thede Family Center) offers full neuropsych testing for children. Visit their website at Home | Counseling in Colorado springs, CO | Michael Collins (wholekidsco.com).