We Must Do Better

I’ve been spending a lot of time thinking about the generations of those with autism spectrum disorder in my family, myself included. While life has gotten better with each subsequent generation, there is still so much work to do. I can only speak to what it’s like trying to navigate this world as an adult because I became aware of my disability as an adult. One of the greatest challenges I’ve found is securing employment.

I had a hard time understanding coworkers and communicating during my first two jobs out of college. Solutions that were floated included changing my clothing, makeup, and sitting differently. These changes were not enough for me to appear as neurotypical as necessary. I’ve wrestled with whether or not to disclose so many times. I’ve never disclosed it in interviews because I feared my disability would be an inconvenience to operating a business. If I knew that it wouldn’t affect my employment, then I probably would. I’ve landed jobs where my coworkers think I’m either stupid or mean for how I react to specific stressors. They react negatively to things outside my control and a mess follows. Even with my challenges accessing, employment, I’m one of the lucky ones. Securing a job is difficult for those on the spectrum and few companies see the value we can bring to the table. I’m lucky that I have a full-time job and benefits. It shouldn’t be a fluke that I’m able to mask enough to be employed. Companies need to stop viewing us as inconveniences to their bottom line. We’re smart, capable, and competent. We do need more soft skills coaching, but we can learn. There’s nothing worse than not feeling welcome or understood in a work environment. I can also say that educating your coworkers is exhausting. I’ve been told i “look neurotypical”. It’s impossible to look neurotypical. What they mean to say is that I don’t fit the stereotype they had in their head for someone with my disability. Sorry to disappoint. Organizations need to include educating their workers on neurodiversity and protecting their neurodivergent workers. It angers me that I have friends who are talented and hardworking and they aren’t able to find full-time employment. When we ask for employment after we’ve gone to college, we’re told we can work as baristas. There’s nothing wrong with working in a service industry, but we all know a neurotypical finance major wouldn’t be told the same thing. I’ve had to carve my way to a large extent careerwise and I want those behind me to have an easier time. We must do better for the next generation of those with ASD because what currently exists is not acceptable.

Another area where improvement is needed is independent living. If you need support to live independently, your family either pays for it privately or you wait for a spot to come available in a group home, at least this is how it is in my state. It’s not fair that to have access to housing, you have to pay through the nose or wait almost ten years. There’s a huge affordable housing crisis in this country, and this is a microcosm of that. Being able to leave home, have your own space, and carve out your own life is an important part of becoming an adult and transitioning towards either complete independence or more independence. Caregivers can become burnt out and adults would rather be in their own space anyway. In the past few years, a residential community for those with ASD was going to be constructed not far from where I live. The people who lived around the proposed site were horrified. They were afraid of their property values decreasing and their safety. This shows how deep the ignorance goes and how much education must still be done. What are they scared of exactly? Someone standing in their yard stimming who has “escaped” from the community? Those with disabilities are just as worthy to be in and seen by society as anyone else. We want and need to be welcomed, not shunned. We’re people just like you, who need their basic needs met. Fear keeps people from thinking clearly and engaging in solutions. Hysteria never led to anything constructive or meaningful. Instead of fearing what you don’t understand, do some research.

Women have a particularly hard time getting a diagnosis. I almost didn’t get mine. My neurologist at the time thought that because I’d had friends in high school, dated, and done well academically, I couldn’t possibly have asd. The idea of who can have it needs to change. Women can often mask better than men and that comes at a great cost. Women on the spectrum, specifically level 1, are at a higher rate of suicidality. We know what our challenges are and how they’re thwarting us from reaching our goals. When we’re not diagnosed, we think there’s something wrong with us. The average age for someone with ASD to live is 40. There are lots of factors that play into this statistic and the increased suicidality is one of them. A diagnosis can be life-changing, healing, and affirming. Denying a woman or anyone that tool is wrong. Healthcare practitioners, if an adult comes to you wanting a referral for a workup to see if they have asd, give it to them. By the time we talk to you, we’ve already thought it over and know we need it. Sure we might not be flapping our arms in your office or having a meltdown, but it doesn’t mean we aren’t suffering and in need to help. I was given my referral, but not everyone is. On a closing note, I’d like to address parents. A diagnosis isn’t a death sentence for your child. Having information about how your brain works is powerful. Don’t deny them that because you’re afraid of what’s on the other side of a diagnosis.

In closing, this world isn’t always a friendly place for those of us who are neurodivergent. There are so many barriers to having access to the basics of life for so many of us. I plan to continue to shine a light on the challenges my community faces in hopes that future generations will have the resources they need. 


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