I’m An Adult Living With Autism & Here’s What I Want You To Know

by Minerva Siegel

I have high-functioning autism, a learning disability, and severe ADD. While my autism has given me many strengths, I also have a lot of challenges. My mind is such a busy, chaotic place that I'm easily overwhelmed by outside stimuli. Grocery shopping is especially difficult for me. There's something about all the different, brightly-colored packages that fill towering shelves, combined with bright fluorescent lighting, overhead music and crowds, that's just too much for me to handle. I get disoriented easily, I can't do even basic arithmetic, and I make a lot of social missteps, because conventional socialization doesn't come naturally to me. Even with all these challenges, some of the misconceptions that come with having autism have been the most difficult. Still, I have a great group of friends who really appreciate me for who I am, and that's probably the best feeling in the world.

I'm married to a neurotypical (an individual who do not have qualities of autism) man, who never had any experience dealing with anyone with severe mental illness before he met me. When we started dating, I told him about my diagnoses, and he was very proactive about learning how to help me. He accompanied me to psychiatry and therapy appointments, and did endless research on the internet about how to support me. I feel so fortunate to be surrounded by thoughtful people who appreciate me, even though I'm idiosyncratic (or, as my husband calls me, quirky).

So many incorrect assumptions and generalizations about autistic people are often thrown around. So many neurotypical people have tried to speak for us, and a lot of them have misrepresented us. I'm autistic, and here are a few things I'd really like you to know.

Autism doesn’t just affect children.

So much information about autism is geared toward parents of children with autism. Even the standard autism awareness symbol, the colorful puzzle piece, appears very juvenile. While I’m so glad that parents have more access than ever to information that benefits their autistic children, the community as a whole is disappointing adults with autism by having such a singular focus on kids.

Autistic children grow up into autistic adults, and we adults need representation, too.

Not every autistic person has the same needs and struggles.

When people find out that I’m autistic, I’m often told that I don’t seem autistic. This is annoying to me, because it just demonstrates their ignorance about autism. Autism presents in very different ways. There’s no standard way for an autistic person to behave or seem. Sometimes, when people tell me I don’t look autistic, it’s obvious that they mean it as a compliment, and that’s honestly very insulting. There’s nothing shameful about being autistic. Who cares if my autism is obvious to others or not? Being autistic doesn’t make me any less of a person. It just makes me different.

Autism is often accompanied by other mental illnesses, according to The National Autistic Society. Along with my autism comes severe ADD and a learning disability. Essentially, my intellect is extremely unbalanced. I can’t do even basic math with single digits, but I memorize French poetry in my spare time and study theoretical astrophysics for fun. I’m also almost always disoriented. Even in my own home, I sometimes forget the layout and get confused about how to get from one room to another. Thank the heavens for GPS! I always keep a few backup GPS devices in my car, because I can’t even navigate my own neighborhood without one, and my brain can’t decipher maps. We autistic babes all have different needs and limitations, so please don't make generalizations about us. Get to know us individually.

Please be open to changing our plans to something more low-key I’m feeling overstimulated.

My autism makes me sensitive to overstimulation. My mind is such a hectic, busy, colorful place that external stimuli can easily overwhelm me. I think in layers; my brain has three to six inner dialogues going on at once at any given time, and when you combine all that chaos with loud music, bright lights, or bustling environments, it’s often just too much for me to handle. When I’m overstimulated, it sends me into a panic. As a kid, I’d have classic tantrums. Now that I’m an adult, I get angry, irritated, scared and frustrated when too much is going on in my brain, and I make a lot of rash decisions that I quickly regret. If my mind is calm and I’ve had time to prepare myself with self-care and therapy techniques, I can sometimes handle intimate concerts, shopping at busy, bright stores, or being around crowds for a small amount of time. Still, overall, I’m just never going to be the wild, party girl who’s down for anything, anytime, and that's OK.

I wish more people understood my autism enough to realize that I’m not trying to be stubborn and inflexible when I say I’m not feeling up for a lot of commotion. In fact, it’s taken me years to become self-aware enough to be able to communicate my need for low-key environments and activities. I’m proud of my ability to communicate my needs, and when others get frustrated with me for wanting to avoid overstimulation, it really bums me out. Being my friend might not be terribly exciting, but I think I still bring a lot of great qualities to the table. I just want people to stop seeing me as a stick-in-the-mud for needing to plan ahead and stick primarily to chill activities.

Socializing just doesn’t come naturally to me.

Typical socialization doesn’t come easily for me. I had years of intensive therapy to overcome my natural, overwhelming urge to avoid eye contact. Even to this day, it still feels too intimate for my comfort, but I’ve learned to push through my aversion and look people in the eyes anyway, at a pace I felt comfortable with. I had a speech impediment as a child, and just generally never really liked socializing with many other people. One-on-one interactions are fine, but I sometimes feel nervous and overwhelmed in groups. Honestly, I feel a little alien a lot of the time. I miss a lot of social cues. I say the wrong things at the wrong time, and I only know this because of the all-too-familiar sideways glances that people exchange with each other when I make social missteps. My social awkwardness often leaves me feeling crummy and misunderstood.

My best friends are amazing, because they know to gently call me out when I’ve made a social mistake, without belittling me for it or holding it against me. For example, I tend to see things in black and white, and my best friend was telling me the other day about a breakup she’s going through. All my advice to her was very linear, and it came across as being insensitive. She said, “Do you think you could be oversimplifying things a little?” She helped me to see things from a more emotional perspective than the logical one I was defaulting to. Then, I understood that her situation called for more emotional compassion and less critical analysis. She knows me well enough to know that I wasn’t being cruel or uncaring in my logical brevity. I simply needed to be guided into the right frame of mind to comfort her.

My autism is part of me, and I don’t want it "cured."

A lot of major autism awareness charities focus on curing autism, and that’s so insulting and backward. My autism isn’t a disease to be cured; it’s part of who I am. My brain just processes things very differently than the average brain, and that’s OK.

Instead of trying to “fix” me, accept that I’m not broken. It’s our society that’s broken. It’s structured too rigidly and doesn’t leave room to accommodate the needs of autistic people. I have so many gifts and a lot of unique, intrinsic value, but our society is structured in a way that makes it almost impossible for people like me to use our gifts to our full potential. Colleges are focused on creating “well-rounded” individuals. Well, the simple fact is that my intelligence isn’t capable of being cultivated in the "well-rounded" way society seems to expect. I’m either brilliant or clinically garbage at subjects, and I didn’t go to college because I knew some of the classes I’d have to take would be detrimental to my mental health.

Even with the allowances and help I’d get as an autistic person with a learning disability, I knew subjecting myself to classes that my brain simply isn’t designed to understand would hugely affect my self-esteem. The whole idea of valuing well-balanced intelligence is ableist and exclusionary of neurodivergent people. I want society to open its mind and learn to accommodate neurodivergent people like me, and give us what we need to thrive rather than trying to shove us into the same little boxes that work for neurotypical people.

While all people with autism have challenges, they can present in very different ways. Some autistic people struggle enormously with communication. Some struggle with writing, math, coordination, etc. So, you just can’t generalize autistic people. If someone tells you they’re autistic, don’t assume anything about them. Instead, get to know their individual needs.

When people find out I’m autistic and ask me what they can do to help me feel more comfortable, I’m honestly so touched. Sometimes, things as simple as turning a few lights down or turning off a television that isn’t being watched can enormously affect my comfort and ability to function. Please try to be more accepting of autistic people, our needs and our idiosyncrasies. I don't want a cure; I want to be accepted. We autistic babes deserve to feel loved, understood, and supported, too.