Today we are going to get into the nitty-gritty of why I started this blog; to reach out and try making a positive impact. I will be starting a series called “Being A Voice (or at least trying to be),” in which I will explain the different aspects of my life on the autism spectrum. In this series, I hope to reach out to those who have experiences with autism, whether you’ve been diagnosed, have a child who has been, or perhaps even both. Of course, I can’t speak for everyone, as we each find ourselves in places on a highly variable spectrum, and as a result, have different experiences. There are often just as many differences between us as there are similarities. That said, all I can do is share my experiences, and hope that they give some people an idea of what we go through on a regular basis. If this can educate families, teachers, caregivers, or friends of people on the spectrum on how to help their loved ones lead full and productive lives, then I’ve done what I hoped to do. To start off, I’d like to talk about something very important: communication.
I am blessed to have a (mostly) clear speaking voice, as well as a knack for writing, at least, according to my family and friends. But like most others, I had to start from somewhere. I don’t remember a lot about my early verbal developments, so the early year details are from my mom’s memory.
Early Years
When I was a baby and toddler, my speech was somewhat delayed. I spoke individual words here and there but did not combine them into phrases. I didn’t talk much. I loved music and could sing entire songs somewhere between age 2 and 3, and apparently on key!
A few months after beginning preschool, the teacher recommended a hearing test because I didn’t respond to some verbal prompts and didn’t speak much or interact with the other kids. My mom knew hearing wasn’t the problem (she says it was impossible to walk into my room at night without waking me up) but she followed through on the hearing and speech diagnostic. This was age 4, and the diagnosis was Speech Impairment (or SI for short). They told us about PPCD, a preschool program of the school district. I began going there 4 mornings per week and received speech therapy.
Also around age 4, my mom wanted to do everything possible to increase any type of language skills and began using Hooked on Phonics with me. This helped me get a head-start on basic alphabet and reading skills before going to kindergarten. Speech therapy continued in Kindergarten and through my elementary school years, usually 1-2 times a week. I do remember those sessions. I could verbalize words clearly, so the therapy focused mostly on conversation skills, making eye contact and other social skills.
Copying and memorization from music and movies was a big part of my verbal language and I could recite entire movie dialogues, including those with made-up languages like segments of Star Wars.
Though I have come a long way, using words verbally wasn’t always easy for me, and can still be a challenge once in a blue moon, depending on the situation. There have been times where I would get so frustrated with a situation that I felt I had no other option but to use gestures and make different noises to express my discomfort. This is common with a lot of people on the spectrum, especially those who use few words, or no words at all! Let’s talk about one of my roommates, Steve, for example. But first, a little backstory as to how I met him.
Meeting Steve
It was around April of 2018 when I knew I wanted to move back to my hometown after four years of living in College Station. I was thinking I would just get an apartment with my brother, but there was another option that we decided to try. I came back home to celebrate my brother’s graduation from college in the beginning of the summer, and Mom explained to me that there was a private community home with a room available. The home was owned by Steve’s parents, and they leased out two of the bedrooms. The idea of the house is for Steve to have a permanent home, and to live with two other guys with intellectual disabilities who are high functioning (he also has a caregiver who lives there for added safety). Of course, having a place to be, should anything happen to his parents, is of importance, as well. After a few interviews, they ended up deciding I was a good fit for the home, and I later moved in.
Steve is pretty much non-verbal, although recently, I did hear him say some words I didn’t recall hearing from him when I first moved in. I don’t know if he ever uses words when I’m not around, or if he did before I moved in, but I can definitely say that it’s a sign of improvement from whatever range of ability the doctors may have thought he’d be limited to. Now, I’m not trying to disparage doctors or the work they do, but many of my friends (both on the spectrum and with other learning disabilities) have had their futures told to them or their parents from the point of diagnosis. And it doesn’t really help the parents to hear that about their child, as it could potentially paint a dark and lonely future. Sure, we’re different, but our futures can still be bright and full of love. Not only that, but our brains are just as elastic as yours, and the ability to learn isn’t somehow shut off by whatever gene flips on the Autism switch.
But I digress. Although Steve uses a few words, he still communicates primarily with noises, facial expressions, and sometimes his iPad. It’s generally pretty easy to tell when he’s happy, or about to explode. If he’s smiling and laughing, nothing to worry about. If he starts screaming, or grits his teeth, it’s time for him to head outback for a cool-down. I don’t know how it’s a cool-down during a Texas summer, but hey, whatever works for him, right? Getting him to use more words and use his iPad more is a work in progress. I’ve even talked to his caregiver about teaching him some sign language, but due to having been relocated to my mom’s house for faster ankle-fracture-recovery, I haven’t been able to follow through with that.
Quick backstory to that: I was racing a friend to the front door of my house, and when shoving him out of the way in an attempt to win (which I did) I fell, and the outside of my right ankle hit the step. Since then, my right leg has been casted, and taken off to undergo surgery, casted again, and I’ve pretty much been cooped up ever since. I think it should go without saying; that was a race I much rather would have lost. It’s always a lame mishap in everyday activities behind these injuries, never some epic story about rescuing cats and dogs from a burning building, or something like that.
My interest in using Sign Language
Moving on. How did sign language come up in helping Steve, you may ask? It began in College Station. My training in PATHS allowed me to become a Registered Direct Support Professional (DSP-R) and after graduating from the program I went to work in a day-hab in Bryan. A day-hab is a place where adults with disabilities can fill their days with activity both in and out of the facility and learn how to be a part of the community. One day, we had a new client who was both deaf and… mostly blind, which was unique to me! In order to help her, I had to learn a few signs myself, and that got me thinking about the benefits (for both myself and future clients) of learning more, should I come across another client who is deaf or whose primary form of communication is sign language at any point in my career.
When I moved back to my hometown, I had hoped to start taking ASL at my local community college as soon as the fall semester came around, but we had a lot of hiccups and had to wait until the spring semester. I finally completed my first ASL class last semester, and plan to continue in the fall, provided I’ve made enough progress on my ankle recovery. I’m still not one-hundred percent sure where this is going to take me; whether it will help in my career in direct support or lead to a new one as an interpreter. But one thing I realized is that sign language is actually a pretty good form of communication for those on the spectrum. Whether you’re non-verbal, few words, or verbal, sign language can be a safety net when you just can’t seem to find the right words or get them out. I hope to learn more and teach people how to use it, whether they’re on the spectrum or close to someone who is, as I am fully confident in their ability to learn and use it to better their lives.
How I can relate to Steve
There have been a few times where Steve’s caregiver would ask me if I could imagine not having a voice. As I mentioned earlier, there have been plenty of times where I lived it. As a kid and adolescent, sentence formation often just didn’t compute. For me, it was due to anxiety or fear of that something unpleasant was about to happen, or not knowing whether or not I was in trouble. I’m not sure why, but it just felt safer to use gestures and noises rather than words. Sometimes I just needed to let out all the fuss and anxiety until I could gather my marbles and use words to explain my struggles or concerns. This may or may not be the case with some other people on the spectrum. I can’t say for sure since I’m… well, me… and not them.
I still have a habit of quoting movies and repeating phrases to myself and talking to myself. Perhaps it stems from a combination of brain processing and loneliness.
Closing Thoughts
One more thing I want to talk about in regard to communication is having patience. Patience is key in this aspect, people, because without it, there’s mis communication.
Seriously, whoever invented miscommunication is literally the devil!
Oh, wait… he did.
Anyway, having patience is crucial when communicating with an individual on the spectrum and… really anyone else with a disability. It’s important to take the time to listen, pay attention to signs, or whichever signals they’re using to send a message, no matter how long it takes. The wait is well worth it in order to gain a clear understanding of what they want or need and will also help in the friendship/relationship building aspect, which I’ll talk about next week. If you grow impatient, things will be miscommunicated, and it will lead to assumptions of what they want or need, and you won’t really make any progress. It could also make them feel slow and limited.
One last thing, if you or your child, family member, student or friend is non-verbal, uses few words, or is like me and has some experiences where no words come out at all, I highly recommend looking into the use of sign language and learning it as an alternate form of communication. It is important for everyone to have a voice, even if it isn’t a voice at all, as it is key in living a full and productive life.
Thank you all for reading. If you found this to be helpful, or believe it will help someone else, please share this on Facebook. I’ll see y’all next week!
Puzzling Life 