Struggling With Undiagnosed Autism

My life made sense once I found out I was Autistic

People confuse me; social cues are a foreign construct; if you try and communicate anything to me using subtle or indirect means, you may as well pick up a brick and talk to that instead.

Hi, my name is Jason, I’m strange and impulsive, but there are reasons.

Image by Tumisu on Pixabay

I tried extra hard to fit in to be normal; it never worked. I couldn’t understand how to get it done, to make friends. Having my “friends” or people who “loved me” manipulate, exploit, and turn their back on me was my version of ordinary; I have had very few interpersonal experiences that don’t revolve around one of these themes. I still carry a cynical outlook on people, a frame of mind that recognizes people as primarily motivated by self-interest; I am sceptical of human sincerity and integrity.

I am still unsure how to form genuine connections with people; as I was approaching the age of 14, I had given up prioritizing interpersonal relationships; it didn’t seem worth the struggle. Over time, I found that I could achieve a richer form of happiness and productivity by enjoying alone time and not seeking validation from other people.

Celebrating & Understanding Autism

Those with me on the autism spectrum know that you’re not a waste of skin; no matter how much pain or trauma you’ve suffered, you can still educate, elevate yourself, and contribute to society while achieving great things. There is so much autistic talent being wasted. We have gifts that the world needs, but invisible communication and sensory barriers prevent us from efficiently integrating into the world.

I am a weird guy, and I have known for a long time that my mind doesn’t work the same as other people. Autism makes me stick out compared to my peers, as if I walk around with a bullseye on my back. Often, I need things spelt out for me in ways that other people would find tedious and unnecessary; most people aren’t welcoming or respectful of this need. People will often say things that suggest something is wrong with me for needing a more thorough explanation, treating me as if I’m stupid or that they are superior.

If you’re a neurotypical person reading this, know that you’ve probably encountered many people on the autism spectrum, and in many cases, you would have no idea. We are autistic people, not people with autism, just as I am a black man, not a man with blackness. I can’t leave my blackness at home to make you feel comfortable, and I can’t drop a part of my autism to live up to your expectations.

We think, communicate, and interact with the world differently. Society thinks we are broken; we are described as having social deficiencies. But science has shown that autistic people can communicate amongst themselves just as effectively as neurotypical people; we can understand each other just fine; it is you ordinary people we have an issue with. Minority groups are expected to conform to the normal way of doing things, and if you don’t, you’re outcasted, and your differences are rarely accommodated.

Autism is not a straight line with mild and severe at opposing ends: Repetitive behaviours, social communication differences, stimming, sensory sensitivity, and difficulty with executive function are all unique aspects of autism that vary from person to person, causing different types of struggles.

When you’re autistic, people make you feel like your existence is wrong; they pity you because you choose to take a different path to meet the same needs and goals.

It’s Hard to Get an Autism Diagnosis as an Adult

If you get a misdiagnosis, you will be prescribed medication that doesn’t work and can leave you with dependency issues. Alternatively, the ineffectiveness of healthcare can make you lose faith in trying to get help, further delaying the possibility of a diagnosis. In the world of autism, I’m sure it’s accurate to say that misdiagnosis is more of a problem than a late diagnosis.

A big problem with why an undiagnosed autistic person won’t figure out that they are on the spectrum is that most people have a misrepresented idea of what it means to be autistic. I was never aware of the actual characteristics of an autistic person, so I could never make that association. I could only question why I was different from my peers.

I have been through my fair share of hardships in life, but recently coming to grips with the fact that I am autistic has allowed me to shake off many of my depressing thoughts and anxieties. These thoughts were so pervasive that I thought I was suffering from PTSD, Schizophrenia, or some other Mental illness.

Adults on the autism spectrum have developed a lot of masking behaviours, skills that allow us to blend in and appear normal in public; it is not something that I can keep up for long. We mask because it’s normal for us to be emotionally and physically traumatized, abused and ostracised for not fitting in. Because I tend to reserve and contain myself around neurotypical people, they will often get offended, surprised, and even embarrassed when my proper form begins to leak out.

When people are ignorant and don’t understand the way my mind works, they tend not to believe my words or acknowledge my pain and needs. Our reality is not living in a world that will try to adapt to our needs; instead, it is about forcing us to act normal; after all, I don’t think people care about problems they can’t empathize with. Think back to your childhood, in school, and think about what happened to any child considered weird or abnormal; it’s probably not good. My mask was so deeply embedded I lost track of who I was, obsessing over what other people wanted me to be.

I Think There are More Cons Than Pros to Remaining Undiagnosed

I am autistic with ADHD, and not knowing for most of my life was a challenge. I always misinterpreted what people were saying and quickly lost focus during conversations, especially when things were going on in the background.

My working style is very impulsive and disorganized. I’m a hard worker with an affinity for learning; still, education is complicated because communication barriers can make it difficult for instructors to explain things to me. I learned to memorize the teacher’s words, and when I got the opportunity, I would find some form of written material to study from and connect the dots.

I didn’t attend my lectures at university, and there was simply no point. My mind would start to wonder at the slightest hint of background noise. Instead, I would use the recorded lecture material. Still, my mind is inquisitive and unfocused, and I would drift off into thoughts, obsessing over the more minor details of the lecture. It could take me 4–6hrs to review 2hrs worth of lecture content. I also have issues with executive function, so I can forget to feed myself if I am caught up in my work; juggling multiple tasks is problematic.

I always knew my way of thinking was different from my peers, we weren’t processing the world in the same way, and our needs were very different. There are many more subtleties that would distinguish me from most people. Still, they were not enough to figure out that I was autistic.

I don’t know if I would have tried as hard if I thought I had a disability. Im still not sure if knowing would have been for the best; I can’t shake the thought that knowing I was autistic would have made me give up more in life and not try as hard to improve on my faults.

Autism is not a disability, but I framed it that way in my mind. I wasn’t diagnosed as an adult; I was just unaware my parents had already carried out the diagnosis, and it had never been discussed with me by anyone in the family. My only reference to autism was looking at my younger brother, who is non-verbal with an intellectual disability. I was under the impression that autism would only result in those characteristics; I had no idea of the diversity of the spectrum.

It’s crazy because even though I feel like there may have been a part of me that would have wanted to use it as an excuse, I don’t think my hindsight is helpful. I can’t become the best version of myself without understanding who I am. Autism isn’t a disability or “condition”. It is a crucial part of my identity.

One of the most depressing realities of realizing I was autistic this late was that it might have been easier to form stronger relationships with the right people if I had known earlier. If there were times when I had misinterpreted a gesture or offended someone, knowledge of the communication differences could have served to ease tension or make it easier to resolve conflicts that had stirred up.

Finding out that I was autistic lifted a huge burden from my shoulders. When you know, you’re different but don’t understand why it can feel like hell. I know that I wasn’t made to process the world as most people do. I’ll never be normal, and there isn’t a reason for me to feel wrong about that. My mental health has improved, and my self-esteem has been high since the realization.

I can now access reading materials to learn more about autism and myself to understand and work on my shortcomings more efficiently.