How do I support and respect? Does one automatically come with the other? Probably not.
I have a huge pet peeve with people that talk to Autistic adults (or anyone with a disability) in the 'child voice'. You know the voice, it's the tone you would use with a 5 year old, slow and high pitched. The sentences always ending with an upward inflection. I hate it. To me it feels aggressive, dismissive and disrespectful. But at the same time I understand why it happens.
People want to help. People feel nervous. Maybe they are afraid they are going to offend. So they try and control the situation, and this is the fork in the road I worry about.
Alex is going to be 17 in April, adulthood is here. I can't pretend that he is a little boy anymore and this is making me question all of my assumptions. It's a huge puzzle, having a 17 year old Autistic son that you're still raising and supporting. The lines get fuzzy. I want to help and I'm nervous. I know that supporting an adult is totally different than supporting a child. What I'm trying to figure out is where support crosses the line into disrespect?
Would you walk into the bathroom to make sure that your typical 17 year old son washed himself? I guess if you wanted to start World War 3 you would. Everyone would say it's completely disrespectful. But what if you have an Autistic 17 year old? That's a different story. There might be legitimate reasons you would need to check on them. How do you balance being in the bathroom with respect?
So lets say your Autistic son hates washing his body. You've tried visual schedules, rewards, videos and nothings really working. What do you do now? Do you stand in the shower and make sure he washes? Do you open the curtain and tell him to wash, stand outside the curtain and tell him, outside the door? Now, for fun lets add some sensory issues, he's having a rough week and he's not processing language well. Verbal instruction isn't working, you might need to hand him the soap to really connect him with the goal. How do you support him, work towards independence and treat him with dignity? Can you see why I'm obsessed with respect?
It would be so easy to slide into the idea that he's a child in a man's body. It would make the decisions so much simpler. Of course I'd get in the bathroom and make sure he washes! Of course I'd open the shower curtain and make sure he did it correctly! Washing is important. He needs to be clean when he's in public. Getting clean is the goal.
Except it's not the goal. Sure I'd like him to be clean but at what cost?
I imagine what it would be like to be in Alex's body. I'm Autistic, I'm also intelligent, capable and I like to do things on my own. My expressive language is limited so I can't verbalize my sense of frustration with situations. Often my frustration is seen as a behavior instead of communication. I've had years and years of intense therapy. I'm starting to push back because I'm tired of the hovering.
Can you imagine how angry Alex would be if i continued to treat him like a child? I could get him perfectly washed but it would cost me. Our relationship would suffer. He would see me as an obstacle, someone that isn't listening. He'd feel trapped.
So I'm using respect as a the baseline for all the independence programs. It might mean things take longer. I might need to send him back into the shower after he's already taken one. I might need to stand outside his door for 20 minutes while he gets dressed and makes his bed (thank god for podcasts). They say it's a marathon not a race right?