I Used to be Really Bad at Communicating, Then I Got my Autism Spectrum Disorder Diagnosis

As a child, I didn’t know I was different. I attributed bullying, bad situations, and negative conversations to my Hispanic background. As I got older, I thought people who didn’t like me were racist, sexist, or stupid. I figured out I was a little different in high school when I realized I had to have social situations explained to me by my close friends. I didn’t understand how I said the wrong thing all the time; I just knew I did it. My mom called it “foot-in-mouth syndrome.” I figured she was making a joke.

There are two crucial parts of autism: poor social skills and poor communication skills. The way those two parts interact in the autistic brain is that the stimuli in the environment distract from an emotional conversation (which, let’s face it, is every conversation). It’s in the brain, so it’s neurological. We can’t psychologically get distracted by the environment. Often, those distractions cause us to project invalid subtle emotional cues. The cues we unintentionally project get mistaken for emotions directed at whoever we’re our conversation partner. You can see how this poses problems — lots of misunderstandings.

I learned about emotions from reading a lot, but I still have trouble with social nuance. It’s a bit of a mystery to me. Sometimes I’ll recognize a subtle emotional cue is happening, like an eyebrow raise or a blank stare. Sometimes I respond appropriately, but sometimes I misinterpret what it means in regards to what I’m saying, and that will lead to confusion. It’s easier for me to ignore the cue, so I don’t get distracted from the main point of the conversation. I do this by looking away or closing my eyes. People won’t judge you for missing their cues if they can see that you aren’t looking for them.

Eye contact and staring at faces drift my focus from the speaker’s words to what’s going on around me. It’s the opposite that happens in neurotypical people. I’ll be listening intently and understanding completely, but if during my turn to talk, I can’t focus on getting my words together. Typically, the breakdown goes like this: first, I start listing off all of the things around me that are distracting, like noises, smells, brightness, etc. if it’s a lot, the tone of my voice changes and becomes a little aggressive. I didn’t use to think anything of it until I realized that was the reason people didn’t know I was a nice person. I get very nervous talking because of that now. I like people thinking that I’m nice. Wearing sensory dulling aids, like sunglasses, earplugs, and long-sleeved shirts help keep me focused on the person talking to me.

I learned about autism when I was 24. I had the phrases that I would say to common reactions to me, and I didn’t think anything of it. One day, after a particularly lousy interaction, I googled “not good at socializing” and found quite a few mental health resources. I stumbled on a page about autism, and my world went for a spin.

At first, I was in denial. This denial phase lasted for about a year. I learned little random things about autism, and I would tell myself I didn’t do them, so that meant I didn’t have it. I figured I wasn’t THAT different. I had some social skills, I just needed to get better, and just because I didn’t make eye contact didn’t mean I had autism.

That year was a tough year for my health. I was gaining weight, experiencing joint pain, headaches, fatigue, random rashes, and LOTS of stress. I would break out into hives if I got too stressed out, which seemed to happen over any little thing. I decided it was finally time to see a therapist. Not because of that autism business, I didn’t have autism, I thought, but just because I was so stressed by life and not being able to keep up. I was feeling pretty down about myself.

After a few visits with my therapist, she asked me if I’d ever heard of autism. We discussed it, and she advised me to look into the community. I got my diagnosis confirmed by a psychiatrist.

I’m still figuring out my life on the spectrum. I would say it was a little bit of a relief, but a massive jolt to reality. I had no idea I was as different as I am. When I was a kid, people told me I was special, but I thought it was one of those things they said to kids to make them feel good. I never took it seriously. I waited to tell my mom about my diagnosis, and when I told her, I started by telling her first that I was different. Like really different, according to my therapist. She told me that she knew. That was mostly the relief. It also made me feel self-conscious because I realized it wasn’t everyone else; it was me. My perspective changed. My diagnosis made me more self-aware.

My brain processes emotions based on words, so eventually in conversation, words start to mean nothing. I start getting anxious if I still don’t understand, and I notice this is beginning to happen. Combine this with sensory distractions, and I might shut down, have a panic attack, or maybe even have a meltdown. There is a reason that people with autism feel shame and humiliation when we experience meltdowns.

Meltdowns happen when we experience sensory or social overload or both. It’s difficult for us to control our emotions at that point, so the more emotional intelligence we have, the less likely we are to be a danger to ourselves. Self-hitting, crying, screaming, and yelling is examples of this harrowing and embarrassing experience.

I struggle with feeling proud and frustrated. Proud to be a part of a community based on inclusion, self-awareness, and acceptance. Frustrated that minute things out of my control affect what I can and can’t do at times. I find myself experiencing emotional awakening more times than I thought possible. There are so many layers to human emotion, and it’s so difficult to keep track. There is something to feel that I never considered before my diagnosis, though: being interpreted as friendly feels good.

7 thoughts on “I Used to be Really Bad at Communicating, Then I Got my Autism Spectrum Disorder Diagnosis

  1. I read your article about how to speak and communicate with someone with autism on Healthline. I just found out my 22 yr old daughter is on the spectrum, and my parenting didn’t match very well for that. I need to dive deeper to learn how to communicate with her. I am looking for resources from those on the spectrum, not other neurotypicals. Can you help me?

      • Hi Arianne. I’m on the internet at 3 in the morning looking for something to help me to be able to reach out to my 30 year old son who self isolates to a disturbing degree. He’d been trying to finish his degree in statistics (he’s always been academically brilliant), he was down to a handful of classes – then he just quit. He quit school to my shock and he won’t talk about why. He was going to school and always maintaining a job. Now that he’s not going to school he’s picked up his hours at work. He works and comes home and stays in his room. I know he’s become suicidal. I hear him crying, sometimes sobbing as he beats himself up saying he’s so stupid – or what a hypocrite he’s been. Tonight I heard him say – aren’t I good enough for anyone? He needs some tenderness from someone who cares about him and he will no longer let it be me.

        I’m crushed and clueless as to what to do to try to help him. As of a year ago he won’t talk to me. He blew up and told me I was the worst mother and that I didn’t provide him with the life skills he needed. He’s been beating himself up that he still lives at home – he has self loathing that concerns me to my core. Nothing I say ever helps and I finally succumbed to giving him his space and leaving him alone.

        Being pressured from my family that he needs to be out on his own, I recently asked him to move out but I can’t get a move out date from him. He said, believe me there’s nothing more that I want than to move out – and I know that’s true. He saves his money – he hardly spends money on anything other than an occasional game that’s been on clearance and his groceries – as he’s told me a year ago when he had his blowup that I’m to not cook for him, ever wash his clothes or do anything else for him. Last Christmas was the first time he didn’t celebrate it and would not accept any gifts from any of us. Even months later as I tried to give him things that were bought for him – he refused them. Once in a great moon I’ll hear him on the phone talking with a girl and I always have such high hopes that he’ll meet the one who will care about him. He’ll be talking for several hours with her but then nothing seems to go further than that.

        He made the comment to me about 5 months ago that he thinks he might be borderline autistic and I have thought that for some years now. I told him I thought that as well and then he clammed up and didn’t elaborate or want to talk of it any further. I’m sure I said the wrong thing – I missed my window to be able to go further with a conversation about it.

        I came across your website and have been reading a lot that you have on here and just felt like you might be able to offer some advice to me or give me some direction.

      • These comments are a public forum, can you copy this into an email and send it to me on the contact page so I can respond to you? 🙂

  2. I’m 36 and 99 percent sure I’m autistic. I don’t want a diagnosis for fear of the harassment (CPS, or other institutions) I would get being a mother of eight. I love my kids and I crush and rebuild myself everyday so that they won’t have to deal with my issues. I also to want to tell people I’m autistic for fear that they will be offended by my claim without a professional diagnosis. You seem like someone who will understand me…. a rare find. I’m hiding from the world but I feel like I need someone who truly understands to talk to. I hope I don’t offend you with my fear of seeking a proper diagnosis. I might someday. I desperately want to have the question of wether I’m in fact autistic or not answered. …I just don’t know what to do

    • Can you send me an email through the contact page? You don’t have to hide from me, you are right. I am safe 🙂

  3. I forgot to mention that I’m a woman. I don’t know if that matters… I was looking for an late diagnosed autistic woman with whom I could speak.

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