When I think of Caleb psychologically, emotionally, and his self-confidence – my understanding of who he is as a person has changed. My focus has shifted. I’m speaking to him differently. I’m listening to him differently. I used to think: ‘I know what the end result is, so it’ll be easier if I just make the decision.’ However, when I allow Caleb to exercise that independence, it has helped him to grow and mature. Now, when we talk about something, we discuss different options. Sometimes he’ll offer a wacky explanation. But when he expresses his reasoning behind it, I realize it’s very valid and I wouldn’t have thought about the decision in the same way. He’s now changed the way I think about a few things.  

Caleb is a person who needs time to process things, so granting him the space and autonomy to do so is important. I’m quite impatient. If a decision needs to be made, I’m more inclined to step in and get it over with – Caleb doesn’t work like that. However, that’s something I wasn’t aware of before because I was always just making decision for him. It’s been difficult to step back and give him control.  

Sometimes his plans and my plans don’t fit together and he’s adamant about waiting, which can be frustrating. However, in the long run, I know he will be more confident in making his own decisions. A recent example of a big decision that had to be made was one about his cat. It was a difficult circumstance, but I wanted to allow Caleb to make the decision himself. If it was my decision, the cat would have been put down about 6 months ago because she had gotten quite sick. However, Caleb decided against that. Later, he realized she really wasn’t doing well, and decided it was the best decision. In retrospect, I think having control of the decision-making, made processing the situation easier for him. If I had just stepped in and taken control, it would have been a complete disaster.  

There was another instance recently with the chiropractor.  Caleb asked whether I was going to do the talking. His question revealed that he was unsure of himself, he doesn’t know his medical history because he is accustomed to me talking for him. This time I told him that the doctor would directly ask him any necessary questions, and if he didn’t have an answer, I could answer if need be. It went really well and when discussing follow-up appointments, Caleb had great questions for the doctor concerning scheduling and duration of treatments, so he knew what he was committing to.  

Caleb is now the one filling out paperwork with the dentist for example and has recently taken over his own life insurance policy. I think the whole crux of this is how Caleb is viewed by other people. If someone with an invisible disability walks into a store, nobody would know that they in fact have a disability. By consequence, store personnel wouldn’t think to treat that person differently because they don’t see a difference. They’ll treat that individual just like anyone else, and the decision-making questions would be asked because they are unaware of the person’s disability. However, because of the society we live in and the stigma it holds around people with disabilities, it’s a different experience for those who have visible disabilities. In this context, a store clerk is sure to adapt the way they interact with that individual because they may assume they can’t make decisions on their own.   

If I think of Mark for example, who supports Caleb to go to the gym. If Mark views Caleb only as a client of his, Mark is going to be inclined to be the “decision-maker.” So I’m thinking I should discuss this with Mark to make sure that he knows Caleb makes his own decisions.   

Furthermore, I need to communicate this to my other son, so that he is clear on these things as well. That’s important because his brother is most likely going to be the one to support Caleb in the long run. I suspect that there’ll be more conflict here because Caleb’s brother still thinks that Caleb’s life needs to be run for him. He has been away for the past 9 years and so doesn’t know Caleb as he is now. I need to educate him so that his mindset about Caleb shifts. I also need to include his wife in these conversations as she’s not so emotionally attached to the situation.   

I also think, in some cases, struggles come from within the individual themselves. I know Caleb has a great deal of learned helplessness behaviour because of the way we’ve taken care of him. Because much of our family life had been focused on his struggles and challenges, it’s also been hard to get Caleb to understand that he can be capable and confident. There are still lots of moments when he’s really hard on himself and beats himself up for not accomplishing things the way he’d like to. He often apologizes to me for being a ‘failure’ or a ‘disaster,’ and it’s just not true.  

Every person wants to make good decisions in life and by nature of who we are as humans, we can’t do that without one another. We need to run our decisions by one another to make sure that they’re not impulsive and that they’re informed. That sort of validation is what we need to help build our self-confidence. We all do these things and need these things to help inform our own decisions. To take that experience away from Caleb because he has autism is a foolish thing to do. That’s what we were doing. That’s what the school system was doing. Unfortunately, I can cite many instances in Caleb’s life where he didn’t have the same decision-making liberty that his brother had because Caleb was regarded as different.  

The educational piece is so important. Bringing this subject to people and letting it sift through their brains is essential. It’ll allow for each of us to understand that when it comes to supporting someone with decision-making, even with our best intentions, we are potentially causing more harm. Furthermore, at some point you’ll have to examine the motive behind your actions. Is it that you’re striving to make life easier for the person you support or is your support motivated by a need to make your life easier and more convenient? I know I’ve been guilty of the latter.