Personal Stories, Autism

Autism - a spectrum of colours

Tell me about yourself

I am 28 years old.  I have a master’s degree in Social work & I have two bachelors degrees in Psychology & Social work. I am engaged to a person who is not on the spectrum but loves me for my “Eccentricity” as they put it.

I was diagnosed with autism at 3 years old. I want to be some form of role model & leader bringing autism awareness, sort of like Temple Grandin. The only problem with that is there is no road map, it’s absolutely limitless, which I find terrifying yet exciting. I’m probably more terrified than excited because I’m just learning how to sell myself to people. I wish it was more like a food recipe, because I love routine & I am way more confident when I know I’m on the right track. Right now there is no right or wrong way about it. I want to be a big asset, it’s just hard to determining how big of an asset I can be.

When were you told that you were autistic?

From the very beginning. At the time it was called Asperger Syndrome. I recall I had trouble understanding & saying it. I used to call it “hanging burgers” as I imagined hamburgers being hanged from the ceiling when I heard my parents say “Asperger’s”.

What was it like for you growing up, and studying for your two degrees?

Everyone says to study what interests you, when you go to college & make a career out of it. The human mind always fascinated me. Neurotypicals ( people not on the spectrum) confused me. I felt like they made everything a lot more complicated which frustrated me. I wanted to understand that, and then once I did I got more into studying the more eccentric people like Charles Manson. I mean it’s not like he woke up someday & said “I’m going to be a cult leader.” No, he had to go from A to B to C to whatever..

I wanted to understand how people so eccentric like that got to be where they were at. I find the human mind to be a bunch of puzzle pieces that I love putting together to understand them. So I eventually got my Psychology degree. I learned afterwards that degree was useless unless I got a Master’s in it which more often than not was being a counselor.

I tried getting my master’s in being in counselor but I got too impatient with people. I don’t enjoy listening to people’s problems & then regurgitating it in order for them to figure everything out on their own. No, you tell me what you want to work on & we work on it together as a team. I’ll help you find the resources you need & I’ll be fully supportive. That is what you call a social worker. So I got a Bachelors in social work & I loved it. Then I decided to get a master’s in that.

I just graduated in May with my Master’s. I’m currently looking for employment.

But what was it like? It was different. I was the only one in my Bachelors & Master’s class that I’m aware of that was on the spectrum. It felt weird knowing the rest of my “tribe” of autistics weren’t with me & how I was fortunate to come this far.

What challenges have you struggled with, and what strategies have helped you with this?

Oh dear, do you have 6 hours? Ha. There’s so many struggles. Well I have trouble with my fine motor skills for one thing. So my handwriting is terrible, I suck at doing jump rope, & I struggle steering anything.

So I had a lot of therapy.

So I cannot drive due to my fine motor skills struggle & ADHD. I just slowly react. I think if I could drive solo without worrying about others, I would eventually be okay at driving. But watching myself & other’s is very intimidating & nerve wrecking for me. I have had 4 driving instructors since I was 16 & they all said “Not everyone is meant for driving. You’re one of them.” That actually made me feel a little bit relieved. I’ve also tried computer simulators learning to drive but my fine motor skills & delayed responses are no good. My fiancée usually drives me around or I walk or I uber. Before I met my fiancée & I lived on my own, I lived near my parents so they would visit me once a week to get groceries & etc. That & if friends ever wanted to see me, they drive to see me.

College- fine motor skills + ADHD+ teachers talking fast= bad note taker. I had note takers who would write notes for me. I still wrote notes to practice for when I am out of college or something ever comes up & I wouldn’t have a note taker.

I have bad test anxiety & I tend to over think things, especially exam questions. So I had it in my IEP that I had extra time & a private room to take exams so I could look over exam questions thoroughly without being rushed in order to make sure I was understanding each question.

I had a high metabolism when I was a kid & I loved to play. Why eat food when I’m not hungry & I can use that time to play? That’s just how I was. When I was 14 however, I was diagnosed with Anorexia. The doctors said “Well you’re under weight, you’re 14 & you are a girl. So that means you are depressed. Oh & Your Autistic! That explains the depression.”

I never stood up for myself because I didn’t understand what was going on. Truth was, I wasn’t depressed & no one asked me about my side of the story. My parents became fearful that I was depressed & possibly suicidal. That really affected me which made me depressed. I’m also autistic, so I wasn’t a social butterfly either. So I was often alone doing my own thing which Is another sign of depression. My parents starting adding food additives to my food to fatten me up but also taste terrible.

I started getting depressed once I realized what this label meant. It took me 6 months but eventually I had the courage to tell my parents how I wasn’t depressed & had 0 suicidal tendencies. I recall writing this huge script & I read it over the phone to my mom as i was afraid face to face interaction would get me worked up with emotions. Anyways, my mom believed me & then my dad believed me. We started working together to get this figured out & for me to gain weight without tasting horrible foods. This sounds like a short scenario, short downfall but this was actually a huge depressing chapter in my life. I am just summarizing it because I have lots of other things I need to get into.

I had a class for special education in high school  that told me I was basically worthless & I would be lucky to graduate high school. They said the only thing I could achieve in the means of employment was being a factory line worker. I never believed them & look at me now-I have a master’s degree. The point of the last two stories is to never let anyone impose you to be & what they label you to be. Imagine if I really did starve myself & I became a factory line worker when I have all of this potential? I honestly don’t know what all my potential is, but I just know to keep going to figure it out.

What positive things about yourself do you associate with being autistic?

I have a great memory & I have extreme drives with things I am obsessed with..
Other than that I feel like I’m no different than anyone else. I just see the world differently & I think I’m no better nor worse than anyone else.

Why is Neurodiversity important to you?

See the world differently. See all life at different angles instead of one way. Life is a complex matter, we shouldn’t see it in black or white.

What do you want people to know about autism?

Autism does not equal intelligence. I’m not rain man & I am not hopelessly lost low functioning individual. It’s a spectrum. Think of colors it’s not just red/yellow/blue/green/purple/pink/orange- no it’s sea blue, baby blue, electric blue, lime green, jungle green, forest green, hot pink, salmon, & etc all these different shades.

Also- one size does not fill all. As in every individual is very unique. Some of us have  sensitive audible sensing stuff & some of us don’t. We (spectrum & non spectrum supporter) ALWAYS work best with one another.

Final thoughts

Self advocacy is the most important thing that I can’t stress enough. People need to be able to speak for themselves & give their input. I have seen countless times where caregivers & all kinds of professionals speak for others which increases the chances of the person being misrepresented.

Think about it, whether a person is low functioning or high functioning their will be a time where they have to be capable to explain their situation & as well as be familiar with what works for them or struggles they may face(my note taking example with fine motor skills.) without someone holding their hand. A parent can’t always be there, and you can’t always rely on the kindness of strangers. I don’t care if you the person not on the spectrum have the best intentions & have a great heart- you’re perspective doesn’t always outweigh the person on the spectrum’s view.

There are times where parents/professionals know best but not always 100% of the time. There needs to be a open partnership with the person on the spectrum where they can speak for themselves with a caregiver/professional working together.

If you have a Neurodiversity related story or personal insights to share, please get in touch as we are always looking for new contributors (regular and once-off)

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About Allison

Autistic adult who was diagnosed as a toddler. I have a master’s degree in social work & I’m always on the move. Currently working on making a project to get other autistic adults being heard.