My experience with #Autism and #Incontinence
It's a new year as I'm typing this. I spent a long time trying to find a story like mine. I feel like sharing what I've been through could help someone else out there. I made this after going through all my school records to help me get a better timeline. Apologies for the length of this if it's abit long.
Let's go back to the beginning, I found a developmental screening test from when I was about to turn 3 years old which states that I "refuse to sit on the toilet. I would let parents know when I needed a change. I could sometimes pee in the toilet, and could use pull-ups. But I would not ask to use the toilet.
I ended up being "toilet trained" around 4 years old, but I continued to have a goal in my school records for using the toilet independently until I was 6. No matter how hard I tried to be responsible as I continued to get older, it felt embarrassing with how often I continued to have bowel accidents in my underwear or the uncomfortable feeling of having to hold a full bladder until I could get to the toilet. I spent most of my time at home when I wasn't in school. I had multiple instances between roughly the ages of 6 and 13 of bowel accidents, sometimes I would lose consciousness in class after not realizing how bad I needed to go holding it in and end up having an accident.
Then around the age of 10, #constipation was a severe challenge for me, and I ended up having an impaction which left me stuck on the toilet for hours in pain and struggling to go. This was along with several years of having bowel accidents in my sleep that I wouldn't notice until I smelled it or I woke up. I remember feeling so tired of cleaning my regular underwear, the thought of wearing pull-ups or diapers left me feeling a little curious. But I didn't want to be labeled as broken. At the time no one offered this as an option and I felt too afraid to ask.
I made it a goal to not let something like the impaction come back again.
However once I reached middle school, I had a new challenge to face. When I was in elementary school, we had time scheduled for our day to use the restroom and thankfully I don't remember any teachers being harsh about it or my accidents. I also had challenges in processing math, and I had a resource teacher that was supposed to help me. I always made it a priority to treat my teachers and peers with respect and kindness, hoping to receive the same in return. This one resource teacher however, yelled at me and the class for the 3 years I had her because we didn't always know the right answer. I wasn't having accidents at this point, but I still would get strong intense urges to go and she would continue to intimidate me. She would remind me how getting a job someday meant I might not always be able to go to the restroom when I feel like I needed to. This deeply hurt me and stuck with me for a long time.
At this point I realized I felt so frustrated over a basic need. I ended up getting a sample of a men's depends pull-up that was too big for me and I wore it to school not knowing I was going on a field trip. I ended up surviving it, but I was still humiliated with the pull-ups jingle from a choir teacher after the trip.
After this incident, at 16 I changed high schools and ended up getting a new support class for those with Autism or social challenges. I told the new school I had #ibs issues at the time, but I was having way less accidents most of the time. Still dealing with strong urges with my bowels, but I was able to make it to the toilet. I still had one bad day with extreme gas that would not quit and was really embarrassing. I'm just thankful it wasn't an accident in class.
By the time I graduated at 19 I was doing good with my assignments and attendance, I realized I had good opportunities with work ahead and I felt confident in what I wanted to do. But after I went on a date with someone who would eventually be my partner, we went out to the mall near Christmas time, when we were in a store and I felt a strong sudden urge like my bowels needed the restroom, and before I could get their attention the pain was strong and I had to pace myself going to the restroom close by. Thankfully I made it but they came to check in me, and I'm thankful they were kind, patient, and understanding about it.
Around this time I had started getting back into Pull-ups occasionally and found it comforting. I could still get to the restroom, but I could be a little bit more prepared just in case. Coming out to my family about needing it wasn't easy, but I was met with an open mind and a willingness to try and help. I tried a medication at one point, and although it helped me slightly in addition to relaxing the occasional muscle tics I've had most of my life, I ended up sleeping way too much and it was not something that worked for me.
It took some time, but after feeling insecure about it, I got a new doctor and with the help of someone I trust, asked them to add bladder and bowel incontinence to my record and they explained it's a part of my Autism. Someone once said to me that "There are some things that we just can't control, but we can still learn to manage it and try out best". These days I can get by when I need to, I'm glad I have the supplies I need in case I have an accident and don't have to worry about running out as of now. When I know I'm in a safe space and I can wear my pull-ups and care for myself as I need to, I feel like I'm finally nurturing a part of myself that I spent so long trying to run away from, or hide and mask so I wasn't known as the "person with accidents". My partner encouraged me to be honest about my challenges, but to also be discreet and responsible, keep trying to do the right things at the right time. I have optimism I can get a good work from home job and continue to accept what I need to help me manage my experience. For me, I focus on fiber, a laxative as needed if I'm stuck, trying to stay hydrated, with apple juice and water, and also wear what I need in case it just can't wait. Accidents happen, and that's okay.
For so long I felt afraid I would be rejected by the world not just because of my social skills or my challenges with math, or understanding what my body needs. But now I'm finally accepting the tools I need and support from others, I feel ready for anything.
I hope if anyone can relate to this journey that it helps you feel something comforting. Please don't give up or lose hope. This wasn't easy to share when I first started typing it out, but I am thankful to be here now accepting it all. Everything I need is already here. Thank you for taking the time to read this.