I am an adult with autism. I am different not less. Well, that is until I have a meltdown, or don’t understand something or pace for hours at night. In which case, I am difficult, incompetent, hyperactive, disruptive, unprofessional and those things make me different.
By Kaelynn Partlow
Go online and see the words “autism acceptance month,” “different not less” and “1 in 59 are affected by autism.” Do some searching and find stores hosting sensory friendly shopping hours. Google “autism” and look at the pages filled with fidget toys, success stories, and special diets. Last month (April) was autism awareness month. I would like to make you aware of some things you won’t hear elsewhere. Let’s start with the facts, the data, the indisputable statistics.
1. In 2018 the CDC determined that approximately 1 in 59 children is diagnosed with an autism spectrum disorder (ASD). Boys are four times more likely to be diagnosed with autism than girls.
2. Minority groups tend to be diagnosed later and less often.
3. Nearly half of 25-year-olds with autism have never held a paying job.
4. The cost of caring for Americans with autism had reached $268 billion in 2015 and would rise to $461 billion by 2025 in the absence of more-effective interventions and support across the life span.
5. Nearly two-thirds of children with autism between the ages of 6 and 15 have been bullied.
6. Only about 17% of young adults on the spectrum ages 21 to 25 have ever lived independently.
Those are pretty harsh, aren’t they? How about these…
One study, published in the American Journal of Public Health in April 2017, finds the life expectancy in the United States of those with ASD to be 36 years old as compared to 72 years old for the general population.
The suicide rate among those with ASD is 9 times higher than the general population.
Thought provoking, isn’t it? Does it make you wonder why more children are being diagnosed? Why is it so difficult to access effective services? Maybe reading this makes you look toward the future…where will autistic adults live when they can no longer live at home? Who will care for them? Who will employ them?
If you’re a parent of a child on the spectrum, you probably have gone over these things in your mind countless times. If you’re a parent, these questions keep you up at night. If you’re a parent, you’ve likely asked people these exact questions, but haven’t gotten a helpful answer.
Yes, people with autism are beautiful, special and unique.
Yes, difference should be celebrated. And yes, our society should make reasonable accommodations so that it is accessible to everyone. Schools must have programs available to students with all kinds of educational needs. Businesses in the United States may not discriminate based on disability.
True, as a society we are beginning to evolve. We slowly become more accepting and in the best cases, welcoming to those who are different. It’s taken us as humans a while to become more tolerant of various ethnicities, religions, abilities, as well as those who identify as LGBTQ, and we’ve still got a long road ahead of us. There is more education to be had, more acceptance to give.
That said, with that education, there needs to come a bit of authenticity and realism. We must look at things as they are before we can decide where they need to go.
Right now, more and more children all over the world are being diagnosed with autism. Right now, too many of those children won’t have access to appropriate services in order to help them make meaningful gains. Right now, children on the autism spectrum grow up to be adults on the spectrum, who often have nowhere to go, nothing to do, and little hope for the future. Adults with autism are frequently isolated, unemployed and struggle with relationships, not due to lack of desire, but due to lack of social and interpersonal skills.
The reality is that autism is complex, pervasive and knows no boundaries. There aren’t currently enough effective and ethical services to go around, and that makes the future scary. With the current lack of supports, many of us in the autism community are scared, and rightfully so. This isn’t “fear mongering” this is a legitimate concern, and it needs to be brought up.
No amount of “different not less” bumper stickers or ‘quiet shopping hours’ will make these deficits go away. At this point, I’m not even sure they help anymore. Most people have heard of or know someone who has autism. Everyone seems to chant the “different not less” slogan, and the implications it has without the reality check.
I am an adult with autism. I am different not less. Well, that is until I have a meltdown, or don’t understand something or pace for hours at night. In which case, I am difficult, incompetent, hyperactive, disruptive, unprofessional and those things make me different. Different than my coworkers, family members, and friends. Is it still ‘not less’ when I cry on the floor for thirty minutes at work? Is it still seen as not less when I start arguments with my family members because I don’t know how else to resolve conflict? What about when I go out to grab a drink with a friend, and panic and hit my own head? Am I still just ‘different’?
Tell me this, when an adolescent girl gets tired of sitting in church, and flips off the congregation in order to be removed, do the members think less? How about when a young man cannot access his favorite item in the store and begin shoving displays and tables, do the other customers really think he’s just different? What if a little boy cannot regulate his emotions and begins to aggress towards his family members or his friends out of sheer frustration?
No matter how much we say we “embrace” autism, the truth is, in doing so, we must also embrace the fact that autism is hard sometimes. No matter how many gains we make in societal acceptance, it will never cover up the really hard things about autism.
My name is Kaelynn Partlow. I live in Greenville, SC and I am 22 years old. I work full time at a fabulous nonprofit organization teaching kids on the autism spectrum. I love my job and my family! I am also passionate about dog training, and work with service dogs in my free time.