I take a lot of bathroom breaks. It can be very annoying to me and others. I feel nervous about it and never want to ask to go because people may think that I am lying because I ask to go so often. I have had incontinence issues in the past, so whenever I feel like I might have to go, I panic and ask to go to the bathroom. It is even more annoying when I am in public because I have to have someone take me. Some people are more understanding about it than others. It is embarrassing, but it is something many people with autism have to deal with, so I think it is important to share about anyways.
Toileting is something I have learned to deal with, but it is a constant thought in the back of my mind. I think about where the nearest bathroom is, how I will ask at the right time, and how my caregiver will react. I hope that one day I won’t need help in public because I don’t need any help at home. I could probably go alone in public if it weren’t for my epilepsy, but that is part of having medical issues, the constant need for support. I have no warning, just the sudden urge to go. From what I understand, neurotypical people don’t have the sudden urgency to go that I do, it comes on more slowly and with more of a warning.
Really, being supported in the bathroom isn’t something we want, so it is important as a caregiver to give autistic people some autonomy so we still feel like we have some control over our body and what we need. Sometimes we may ask more or less than is needed, but that is part of us learning our bodies. It is important not to punish or criticize us for asking because that makes the bathroom even more dreaded and scary. We are listening to our bodies and need our caregivers to listen to us.
Thanks for sharing about this. I think you are right that it is something that many people are not aware of and I am sorry that you have to deal with it. I hope you can develop strategies with your caregivers to make it more comfortable for you!
Hi Mitchell! I think you have something there – as a non-neurotypical, I also find that my body does not always give me the warning others seem to get about going to the bathroom, and it certainly led to some accidents when I was younger. (Also, if I get engrossed in something, or get into something that I’m worried I’ll miss out on – and not without reason – I don’t always “get” the right bathroom-signals.) I’m with you on the “go often just in case” – it’s a caution strategy and definitely better than the alternative. So I hear you on the “asking often” bit.
Just letting you know it’s not just you.
A young man 19 I know gets taken to the bathroom every 15 minutes at his school. They don’t believe he learns anything and it gives him a chance to walk away from everyone. But I do wonder how he feels with a one on one who is usually a young woman required by law to be near him each time. I think your blog is very good. As autism is close to me I read many blogs and tonight is the first time I heard of you. Nice work.