One in 59 kids is born autistic, and more than 3.5 million people in America alone are estimated to be autistic (source: Autism Society). These numbers have been on the rise in recent years, mostly thanks to growing awareness and improvements to diagnostic criteria. Though our understanding of autism is growing, we still have a lot of work to do.
“I spent almost thirty years of my life feeling different but not knowing why living out my own version of the ugly duckling story.”
We have a substantial diagnostic disparity, especially for autistic people my age and the generations before me, who often were swept under the rug. Many, like me, were missed because they had good masking and coping skills.
My life and the moments in it all have been influenced by my autistic experience. It’s who I am and who I’ve always been.
When I was first diagnosed autistic, at the age of 29, I struggled with my employer to have my needs met because the accommodations I asked for were “things that everyone would like to have, and it wouldn’t be fair to give me preferential treatment.”
“Looking back, I don’t believe the employer had any ill intentions. They were unable to understand how someone could really ‘need’ what I was requesting. To them, these things seemed more like wants over needs.”
However, I felt as if my needs and health were unimportant to my employer, so I left a job I could have, if adequately accommodated, done in my sleep.
Increasing numbers of autistic people are entering the workforce. Often sensory, communication, and learning style differences that are common in autistic people are invisible. Unfortunately, many employers are not set up to support employees like me.
Autism is a lifelong difference. Even though I didn’t know it, I was autistic in the first thirty years of my life. My presentation and how I cope and interact with the world may change, but I will always be autistic.
I’m lucky to have been discovered at all. As we move into adulthood, it becomes more likely an autistic neurotype may be missed. Many medical professionals refuse to offer adult autism diagnosis, focusing on children, ignoring the fact that autistic people eventually do grow up and become autistic adults.
There is also a problem with the way autism is diagnosed – most people don’t KNOW what an autistic person in good mental health looks like (because the medical books define autism based on the model of an autistic person in distress). Autistic people who are not struggling may go undiagnosed until they lose their support or encounter new demands in life.
I am an example of a well-supported and empowered autistic person. I understand what autism means to me, currently manage myself well, and have completely changed my lifestyle to accommodate that.
Because I am very sensitive to my environment, I am painfully aware that my success or failure depends heavily on external factors.
“It is vital that my employer also supports me. There are accommodations in place at work that allow me to be the best version of myself.”
I’ve created in the world, where I am mindful of my sensory needs and processing differences – surrounding myself with people who help and empower – allowing me to operate as my best self. Still, if you were to send me back to a “sensory hostile environment” every day, I start to fall apart very quickly (especially with fluorescent lighting).
Working from home, controlling my workload, and my own pace has allowed me to gone from barely surviving to THRIVING. Something the diagnostic manuals don’t yet define but every autistic person is unique. My needs will differ from the next autistic person you meet.
So I ask:
What could employers do to make your life easier?
No open plan, complete flexibility re work hours, work from home when I want, work alone, no micromanaging, online meetings only, own office with no noise, no telephone calls…luckily I have all of that | Heather Shearer, @DrHLShearer
Understanding my social limitations, don’t force me to stay in a noisy room or to make eye contact, and never try stop my stims. | @Kikadonhenha
“Accommodate a schedule that allows for consistent bedtime” @BobYamtich
Understand that we take things literally and having to quantify a euphemism is how we navigate the world. Don’t hold us accountable for taking what is said to the letter and not meeting an expectation because neither the intent nor instruction were clear. | Halloween Bloodfrost, @autisticheart
No cubicles. Make telework an option. Don’t make social events mandatory. Give objective directions. | Storee Powell, @missrusset2006
Clear expectations about how much work should get done. “Just get your work done” is not helpful. I have an infinite backlog of work | Garrett McCullough, @gwmccull
“Let me work from home permanently, and allow a quiet workspace in an open plan office.”
Allow me to work without interruptions, and don’t expect me to change tasks frequently or multitask |@drowland3401
When I come back in a few days and ask you what I agreed to do again, just patiently answer.