Nine Things This Autistic Learned About Autism

Zoey Giesberg, FACT Intern & Future MSW 

As I go about my journey to self-acceptance, I find myself engaging in informal autism research and self-evaluation. The more I learn about autism, the more I figure out how it applies to me and how I see it as a whole. So I’d like to share some things I’ve learned about autism, and thus myself.

1. Autism largely occurs through genetic mutation

When I received my diagnosis at the age of two, the doctors told my parents that it was because of a random genetic mutation in my brain. While the causes of autism weren’t widely understood back then, the next 25 years of autism research have largely supported that theory. A recent BBC study specifically pinpointed to genetic differences between autistic twins as a sign of how it affected them. While there’s some controversy over neurological research funding and alternative theories of autism occurrence, I personally think my doctors were closest to the truth.

2. Autism rates are going up due to better diagnosis

When the Center of Disease Control and Prevention (CDC) revealed last year 1 in 68 children are diagnosed with autism, people were quick to label it an “epidemic” akin to influenza in 1917. I’m hesitant to accept this terminology because the recent boon in autism research. Most autism research is based on detecting its symptoms in early age, and like ADD and ADHD doctors know more what to look for in diagnosis. The current autistic total in the US is about still about 1%, so I’m more likely to believe we’re getting better at spotting autism rather than it being “something in the water”.

3. Autism is more of a difference than a disease

The reason why people use “epidemic” to describe the recent autism stats is due to a widespread belief that autism is a disease. And when I say “disease”, I mean people actually believe autism deteriorates the brain and causes death. Thus autistic people are described as “missing”, as if they somehow fell of the face of the earth. But neurological research is proving autism is more of a genetic difference affecting social and executive skill learning rather than brain damage. Think of it as a rewiring of the brain rather than destroying it.

Also, let me check if I’m still here. * pinches self * Yup, still here. And definitely not missing.

4. Autistic girls are apparently unicorns

In that 1 in 68, four out of five autism diagnoses are given to boys. Thus whenever autism is addressed, an image of a white boy is used to represent it. There’s emerging studies to address that discrepancy (and it goes without saying other races/sexualities/etc. go underrepresented too), but it does explain why my doctors wanted to hospitalize me for further study. I discuss it more in the video with Mikal, but it does help explain why I felt I couldn’t relate to others on the spectrum for much of my life – I couldn’t find my female peers. Have you seen my video on this?

5. My physical tics have a name

I’ve always had odd habits that give me some weird sort of balance: leg-shaking, compulsive peeling, singing and talking to myself, and constantly fidgeting with my hair. These self-regulating habits are known as “stims”. Stimming is usually seen as rocking back and forth, hand flapping, or spinning in circles, but this website shows stims can be a multitude of actions. I’m not entirely sure how different stims are from non-autistics doing the exact same thing, but at least I know I’m not weird for my tics.

6. Autism doesn’t mean a lack of empathy

Despite not knowing what to do in social situations, I’ve always been described as empathetic. I learned early in life that my experience is not universal, so I consistently must value other people’s experiences as valid. Yet a common autistic myth is that autism impacts ability to feel empathy. While that may be true for some on the spectrum, it’s not a universal experience for all autistics. Autistic people are capable of feeling for others (often to overwhelming levels) – it’s the lack of knowing what immediate reaction is socially appropriate. Thus me getting highly emotional over last year’s events in Ferguson is definitely an exercise of empathy, but maybe not be exactly appropriate when discussing it with others.

7. Inclusion, not isolation, is better for autistic people

Autism is often seen as a form of extreme introversion and I’m seeing a trend towards further separating autistic people from the world. Institutionalization has new proponents and I’ve read more than a few stories of parents keeping their autistic kids at home rather than having them engage with their neurotypical peers. While many autistic people do need structured environments, no one benefits from social and environmental isolation. One of the best things my parents did was insist I become a social creature – they made sure I went to a mainstream public school and other places to engage with my peers and complex environments. There I learned how to navigate the world and find places where I was accepted. I wouldn’t know any of that if my parents kept me at home or an institution, and being able to adjust to the outside world has given me more strengths than weaknesses.

8. Autistic people need encouragement and positive role models

Autistic activist and livestock industry specialist Temple Grandin often talks about how her mother, aunt, and teachers encouraged her to follow her passions so she could make great achievements. Yet in a recent Ted Talk, she expressed dismay over increasing lack of opportunities autistic youth have to explore their passions and receive mentorships. As autism becomes more prevalent in our collective conversation, people tend to believe autism inherently limits people’s opportunities and there’s no hope for autistic people to have full rounded lives. I’m severely offended by this because I never felt limited by my autism – my parents gave me free reign to explore and engage in my many interests, I had plenty of teachers who encouraged me to do my best and defend me from bullies, and I can say with certainty FACT believes in my ability to make meaning contributions and change. I wouldn’t be where I am today if I didn’t have that encouragement.

This leads to my last point:

9. Autism should and needs to be accepted

The more people talk about autism, the more it seems to be regarded as a bad thing – a tragedy with no silver linings. But as I read more and more stories of people including autistic people in the world – from Microsoft’s initiative to hire people on the spectrum to initiatives for media and art made by the disabled – the greater hope I have of people accepting autism as a whole. It all comes down to accepting autism as a part of the human condition rather than a tragedy. For someone who spent a lot of my life feeling like a problem, I can say I’ve grown as a person and am coming into my own because I’ve had people accept my autism as a part of me that shouldn’t be shamed. Autism is only the worst thing in the world if we let ourselves believe it. If we can modify that perspective to “autism has its challenges but not a barrier to achieving a good life”, then we can allow autistic people to be included and valued in the wider world.