If you know someone with autism, which is likely considering the rate of autism prevalence in the U.S. is now 1 in 36, then you are probably aware that April is Autism Acceptance Month. This annual celebration of people with autism, denoted by fundraisers, rallies, and social media posts, used to be referred to as “Autism Awareness Month” until 2020, when the Autism Society of America replaced “Awareness” with “Acceptance” for the first time and is now urging the United States government to formally declare April Autism Acceptance Month.
Why the change? Christopher Banks, President and CEO of the Autism Society, said: “While we will always work to spread awareness, words matter as we strive for autistic individuals to live fully in all areas of life. As many individuals and families affected by autism know, acceptance is often one of the biggest barriers to finding and developing a strong support system.”
Other autism advocates, such as The Autistic Self-Advocacy Network (ASAN), the Association of University Centers on Disabilities, Autistic Women and Non-Binary Network, the National Association of Councils on Developmental Disabilities (NACDD), and more, also use Autism Acceptance Month over Autism Awareness Month.
Advocates are fighting for change because clearly there is a vast difference between awareness and acceptance. Awareness is defined as “knowledge or perception of a situation or fact,” while acceptance is defined by “the action or process of being received as adequate or suitable, typically to be admitted into a group.”
In other words, it’s not enough to notice a person has autism; we need to acknowledge the capabilities of people on the autism spectrum, receive them into society as equals, and provide the same education and employment opportunities as everyone else.
Defining Autism: Disorder or Neurodiversity
What exactly is autism? Medical experts define it as a disorder. The American Psychiatric Association calls Autism Spectrum Disorder (ASD) a “complex developmental condition involving persistent challenges with social communication, restricted interests, and repetitive behavior. While autism is considered a lifelong disorder, the degree of impairment in functioning because of these challenges varies between individuals with autism.”
Yet many people with autism don’t like the word “disorder” and prefer the term “neurodiverse,” a movement that began in the 1990s and aimed to increase acceptance and inclusion of all people while embracing neurological differences. With the rise of social media, groups of people with autism were able to connect, commiserate and form a self-advocacy movement.
Harvard Health defines neurodiversity as ” the idea that people experience and interact with the world around them in many different ways; there is no one “right” way of thinking, learning, and behaving, and differences are not viewed as deficits.”
If you ask a person with autism, what is autism? They might say, “I don’t know; I’m just me.”
As the mother of a 21-year-old with autism spectrum disorder I posed the same question to my son. He replied, “It’s just something I have. I don’t think about it too much.”
Temple Grandin, autism influencer, advocate, and author of Visual Thinking: The Hidden Gifts of People Who Think in Pictures, Patterns, and Abstractions, says, “If I could snap my fingers and be non-autistic, I would not. Autism is part of who I am.”
#WearRedInstead — Changing outdated colors and symbols of autism
More recently, people with autism advocate change in other ways, including changing the traditional colors and symbols of autism, e.g., the ‘Light it up Blue’ slogan. The issue with these outdated symbols, according to learnfromautistics.com, is this – “If you want to show solidarity or support of individuals on the spectrum on World Autism Day (April 2), wear #RedInstead. Why? The simplest reason is because that’s what #ActuallyAutistic people are asking you to do.” Here are a few reasons for the change:
- Blue is typically understood to be a symbol of loss, grief, and despair. Many people with ASD prefer to be associated with a color that symbolizes fire, passion, and heart.
- The color blue perpetuates the stereotype that boys are much more likely to be on the spectrum. There is much debate about the validity of these statistics.
- Advocating for acceptance vs. awareness. Most people already know autism exists. Acceptance is what #RedInstead represents.
How Lack of Acceptance Impacts People with Autism
Many people with autism are confused by the exclusion they receive from others, and it is an ongoing source of hurt, frustration and anxiety. Often their anxiety is so severe it leads to a dual diagnosis of autism/anxiety or anxiety/depression they might never have had if the world were more accepting of our differences. And it goes even deeper than that. Judgment and rejection for their differences make them question their capabilities to the point that they shut down, stop learning, and stop trying. Yet people with autism are capable of so much more than we think.
Capabilities of People with Autism
You don’t have to dig deep on the internet to find misconceptions about people with autism — everything from “inability to empathize” to “can’t hold down a job” to “can’t engage in meaningful relationships” — contribute to a narrative that keeps the community undervalued. And it’s not just employers and the general population that buy into this narrative. It’s parents too. As a mother, I understand it (and have done it myself — see #2 below). Still, I have seen so many parents, out of fear (and, of course, love) for their child, prevent them from trying activities or venturing away from the parent based on taking their child at “face value” rather than digging deeper and pushing their child to strive for more. Here are a few examples of activities and accomplishments where people on the spectrum might be able to thrive if given the opportunity. While only you know what your child is capable of, don’t be afraid to push your child with ASD out of their (and your!) comfort zone.
When I first considered sending my son to sleepaway camp, I broached the topic gingerly. His response was a loud “NO. NO WAY! NO! I’m. not. going. I would be too scared to be away from you. No, absolutely not.” You get the idea.
A week later, I showed him camp pictures online; he responded, “No! I’m not going.” For months, I kept bringing it up, saying things like, “Wow did you see they have go-carts?” “Huh, look at this, they have a petting zoo” Finally, one day, I saw him looking online to “see if it looked like a good place to find snakes” — OK, not exactly what I wanted him to do at camp, but I’ll take it. Eventually, we drove on a dreary Saturday in April for a tour. It was freezing; the pool was closed, bunks shuttered – the camp completely downtrodden from the winter. I reminded him how much brighter the property would look in the summer, and he agreed to let us put down a deposit if we promised that if he didn’t like it after DAY ONE, we could come to get him. We promised. As you can guess, on day three, I received an email from him that said, “I love it!!!!!!!!!!!!!!!!!!!!!!!!! I’m having so much fun, I do miss you though. OK see you.”
Starting around 9 or 10, most children are ready for sleepaway camp. Yet for many parents of children on the autism spectrum, it is unthinkable their child would attend camp, citing reasons such as
“My child could never spend a night without me.”
“My child wets the bed.”
“My child has meltdowns.”
“My child has severe anxiety.”
“My child has sensory processing issues and could not tolerate the noise/chaos.”
“My child has food allergies/is a picky eater.”
While understandable, many of these objections (and everyone’s situation is different) are unfounded. Amongst the many reputable and accredited special needs sleepaway camps in the US, most offer highly trained counselors and dedicated staff amid beautiful surroundings to give children with autism their first taste of independence. Many directors of special needs camps are former special education teachers or therapists. Most counselors are college students studying special needs in school. As they work toward their degree in occupational therapy, speech therapy, behavioral therapy, etc., their summer at camp hones their skills and helps them gain valuable experience. Low camper-to-counselor ratios, medical staff on-hand 24/7, and activities carefully curated with special needs in mind all contribute to the independence a child with autism can gain in the summer. Children with autism who are petrified to spend a night away from home like my son, find that after a day or two of “freedom” and the outdoors, they are enjoying a life changing experience.
This is a difficult topic, and I get it. Sending your child with autism onto a highway at 65 mph seems unthinkable. Not to mention passing the written test and road test. Like many kids, my son took a Driver’s Ed course and passed the written test his junior year in high school. But then, out of my own anxiety and fear, I postponed driving lessons for him until his written test had almost expired. Exactly what they tell you NOT TO DO. When we finally went to make an appointment for his road test, COVID hit. Did I mention not to let your child’s written test expire?
Two years, three failed written tests, two failed road tests, and nine trips to DMVs throughout the state later, he passed.
By now, he was 19, but it didn’t matter — he was so proud that he passed; it was a real turning point in his development.
After he got his license, I still exercised caution. I allowed in-town driving only for a year, then slowly smaller highways and the more notable routes like I95 and Garden State Parkway. Now he’s an excellent driver and frequently takes day trips to other states. It’s a lengthy process, but it is doable for kids on the spectrum.
Throughout the K-12 school years, finding the correct placement for a child with ASD is not typically a linear path, and indeed, college, community college, or trade school seems light years away. A student who excels in one area may be deficient in another, resulting in an inappropriate placement. A typical scenario (and this was the case for my son) is bouncing around from self-contained to inclusion to mainstream settings, then back to inclusion and self-contained to find the “least restrictive environment” for a child with ASD. Many schools offer the proper academic support but lack the therapeutic support needed for a child to thrive.
To set students up for success, it is essential that schools provide clinicians who have a toolbox of interventions for students on the autism spectrum. These interventions may include any or all of the following:
- Reset plans. Clinicians work with students and their families to identify what’s likely to trigger emotional upheaval and then come up with strategies to move students into a calmer place. The plan is printed on a laminated card, so it’s always handy. Separate plans may be needed for school and home.
- Play therapy. Play is children’s natural language and way of making sense of their experiences. Through play, therapists can enter their world and communicate with them at their level. During play therapy, the therapist conveys a deep respect for children’s ability to solve problems and make choices, increasing their self-eﬃcacy, self-control, and coping skills.
- Family involvement. Parents, family, and caregivers are indispensable to the autism journey. There are several ways to involve them in treatment meaningfully.
- Parent groups. Many families are overwhelmed and stigmatized by their child’s behavioral and emotional issues. Regular group meetings help parents support each other as they learn skills speciﬁc to their children’s needs.
- Positive Behavioral Supports (PBS). Teaching, modeling and reinforcing positive behavior reduce discipline problems and promote a climate of safety and learning. Teachers are key partners in establishing routines, expectations, and logical consequences in classrooms to model and reinforce positive behavior.
- Mindfulness and coping skills. Having a disability is, simply, stressful. As we’ve seen, many people with autism also experience anxiety and depression. Any autism therapy, therefore, must address these challenges. Mindfulness and meditation practices can help reduce stress, improve focus, and learn to deal with challenges.
Mental health services are another critical component when supporting students with ASD. People on the autism spectrum are often underdiagnosed with mental health concerns leading to a higher incidence of mental health issues among the neurodiverse community. Just like with neurotypical students, untreated challenges can lessen overall functioning. When a dual diagnosis is identified and treated, neurodiverse students experience better outcomes.
While it’s important to note that what works with one child won’t work for all — and may not always work with the same child over time. However, with a full toolbox of interventions, clinicians can select and combine therapies for the most eﬀective treatment.
If a child receives appropriate services during the K-12 years, including academic, behavioral, and mental health support, college is attainable for many students with autism. However, when considering applying for college, it’s important to note that while your child’s IEP (Individualized Education Plan) does not carry over, The Americans with Disabilities Act (1990) stipulates that postsecondary institutions are responsible for providing necessary accommodations when a student discloses a disability.
Additionally, extra support programs for the neurodivergent population at colleges and universities across the US are growing (many colleges charge a fee for these, so be sure to check their website). These services assist the student both academically and socially with activities and support such as social events, assigned coaches with weekly check-ins, early move-in dates for easier acclimation to campus life, e.g., Rowan University’s Autism Path Program, preferential roommate assignments (e.g., room with another neurodivergent student if requested), trained peer mentors and more.
My son attended a post-graduate program at his high school, then spent two years at a local community college and will be transferring to a four-year institution (with a support program) in the fall of 2023. There have been many tears of frustration, a few dropped classes, one F, and an incomplete, but he made it through, and nothing makes him happier than to proudly text me, “I got an 83 on my paper!”
The timeline might be a lot longer, and there will likely be many bumps and bruises. Still, college is attainable for many children on the autism spectrum who are armed with the proper support and information to succeed.
My son started working as a cashier a year ago at our local Stop and Shop. The official training consisted of shadowing another cashier for a day. Hours into his first shift, a customer yelled at him for “throwing” her bread down the conveyor belt. Rather than explaining that bread is more delicate than, say, a six-pack of diet coke, the Manager claimed they didn’t have the staff to continue his training and moved him to bagging groceries.
He was lucky he didn’t lose his job due to his lack of “soft skills” he simply got demoted. According to Connie Sung, associate professor of rehabilitation counseling at Michigan State University’s College of Education, ninety percent of those with disabilities lose their jobs due to the lack of soft skills. Soft skills include skills like communication, adaptability, teamwork, dependability, listening, flexibility, critical thinking, and compromise. These traits can be challenging for some people with autism spectrum disorder and most workplaces don’t offer training in these areas — they assume employees have these traits innately or have learned them in school. But most “training” for people with autism in school focuses on teaching young children with ASD to interact with school peers and family. But that training doesn’t always translate to the workplace.
Securing employment for young adults and adults on the autism spectrum presents a challenge of epic proportions in our country. According to Forbes, adults diagnosed with autism spectrum disorder (ASD) continue to struggle with unemployment or underemployment issues at an extremely high rate, which has only been amplified during the pandemic. Studies estimate a staggering 50-75% of the 5.6 million autistic adults in the U.S. are unemployed or underemployed. Nearly 50% of 25-year-olds with autism have never held a paying job, despite having the skill sets and expertise to excel in the workplace.
Recognition and yes, acceptance of the needs and challenges of people with autism spectrum disorder could go a long way toward mitigating this trend. Some companies are on the cutting edge of change like CAI, whose neurodiversity employment program, CAI Neurodiverse Solutions, is leading the charge in workplace inclusion. The organization’s successful employment model is designed to bring the underutilized and untapped talent pool of neurodivergent individuals into the workforce–serving as proof that change can happen with commitment and innovation.
We’ve made great strides these past 20 years including increased legislation, advocacy and working toward changing the national wording from “Autism Awareness” to “Autism Acceptance.” With continued advocacy and education, we might even reach the pinnacle of progress for those on the autism spectrum which would be no month at all. That would be the best month ever.