Kelly, neurotypical: Allie is my youngest sister, my housemate, and my friend that helps me remember to be young at heart and have goofy fun. She's also a therapist, and her perspective as a loved one and as a professional has provided invaluable insight to me over the years. The picture I chose is one of our favorites and gives a solid glimpse into our relationship.
Allie here. I am Kelly’s younger sister and I share a home with them. Kelly called me after she “caught feelings” for Josh after maybe their second date. Josh had and has many qualities that I was and am excited about for my sister. He is devoted and kind. He loves her entirely and he spends effort and energy learning to understand her. As a sister (and a little bit as a therapist), I am excited that my brother in law seeks to understand Kelly and Kelly responds in kind. Josh was my sister's first partner who actively tried to make sure we had things to talk about and bond over.
Josh has become a friend and more even a much-appreciated older brother. He is someone who wants to protect me, teaches me new things, and is an excellent sounding board if I'm missing logical steps in my own cognitive and mental health. He is always helping with projects I don’t know how to do (although he refuses to just do the drywall repairs needed because he is sure I can do it. I don't want to learn. A compromise is not in sight ).
As roommates, we have grown closer and I know there are times that our needs do not match. I need very little clutter in rooms and Kelly and Josh are not as bothered by lots of stuff, be it books or puzzles or miniatures. (Kelly's note - having a 3-year old means a certain acceptance of clutter.) Kelly and I once squabbled because I was trying to be helpful and clean and she was trying to let me know that the way I was helping was causing more distress for her and Josh. Something, I could not grasp at the time.
My biggest hurdle has been learning that when supporting loved ones with Autism there are a lot of ways to help and advocate, but equally important, there are many way to NOT help or advocate. By nature, I am a fixer. If anyone reading is familiar with the enneagram, I am a 2. I want to make things better and if I can find a way to meet your need before you even know it is a need, I am all the happier. With Josh this has led to a lot of growing experiences for me in the ways my helper/fixer nature causes more distress.
A few examples. One time, I was trying to help by cleaning up my nieces toys in the playroom/Josh’s room. I think I added stress to Josh for about a week minimum. I moved things, I organized things but I also disrupted his space and made it a challenge for him to know where things were. Another time, Josh was with our family and someone brought a balloon into the room. I nearly jumped out of my skin forcing myself not to say to everyone present hey! Josh hates balloons! While this was positively intentioned, Josh was right there. He was handling it and if he needed my help-he would ask. I most likely would have embarrassed him or made the situation worse.
I have learned that when I try to help or fix things for Josh, I am often unintentionally making things worse. Sometimes, I think advocating in that way disrespects Josh. He does not need me to identify his needs for him, to yell at people that are causing him distress. He is fully capable of managing himself and advocating for himself. If Josh asks, or the opportunity presents itself, and I get to help and advocate then we are both happy. I get to help (yay!) and I haven’t disrespected or infantilized him along the way (double yay).
Here is a list of questions I created for myself to help me know when and how to help:
Did Josh ask for help?
Is the way I am helping possibly causing distress for him or others in my household?
Did Josh give consent for me to help or advocate for him?
Did Josh give consent for me to tell others his personal health information?
Would I expect any adult to reasonably handle this on their own?
If the answer is yes, Why do I think Josh can’t or won’t handle it?
Am I helping to make myself feel better or Josh?
These questions may need to change depending on severity of symptoms and behavioral challenges for each person on the spectrum, but they help me to try to curb any times my “help” actually becomes hurt.
Comments