Quality of Life
Updated: Jul 25, 2019
When we got the autism diagnosis it was shocking and scary. I should not have been shocked, there were many clues, but it was shocking nonetheless.
I didn’t want it to be true and I was scared.
Looking back, what made it scary for me was the unknowing.
Not knowing what the future held.
Will my child ever be able to hold a conversation?
Will my child have a friend?
Will my child ever be able to handle the slightest change in routine without a meltdown?
Thinking even further into the future was impossible for me.
Would my child live on his own?
Would my child have a career?
Would my child have hopes and dreams?
Ultimately, what we want for all of our children is to have a good quality of life. That is the goal of the RDI program: quality of life for our kids with autism.
Dr. Gutstein, founder of RDI, breaks down quality of life into three areas: Autonomy, Relatedness and Well Being.
Autonomy includes things like being able to live independently, having meaningful work, taking care of our day to day needs.
Relatedness is having meaningful relationships, friends, or a significant other.
Well being is being okay mentally, having a positive mind set, knowing how to handle challenges and face obstacles with resilience.
The sad truth is that current research shows the quality of life for adults on the autism spectrum is poor. These poor outcomes persist despite intervention and we need to ask ourselves, why?
We believe the current treatment methods are not addressing what it takes to have a quality of life. You don’t achieve quality of life by accumulating facts or increasing IQ points.
The good news is you can learn how to make a difference in your child’s quality of life.
We believe the path to quality of life begins with the parent-child guiding relationship.
We believe you can re-establish this important relationship. You can learn how to set up guiding engagements that will have an impact on your child’s brain development and ultimately their quality of life.
This is so important. We don’t want to just work on behaviors and getting a rote response.
We should not settle for compliance.
We want to develop a sense of self.
We want to build intrinsic motivation.
We want our kids to be dynamic thinkers.
We want our kids to be able to form relationships and have a give and take in their relationships.
We want our kids to be flexible and curious.
We want our kids to engage in exploring and experimenting.
We want our kids to have hopes and dreams.
We want our kids to set goals and accomplish them, even surpass them.
This is all possible!
Dr Gutstein and RDI has given us the roadmap. You just have to take the first step.
Today I’m not afraid of autism.
I love my autistic son. He is amazing, inspiring, funny, socially engaging, motivated and on and on. I would not trade our experiences for the world.
Jake recently did a video on what quality of life means to him. The video is not perfect, the setting is not ideal. But Jake is talking from the heart. There are so many positive moments in his video. The video was spontaneous and unrehearsed. Jake has become very accustomed
to making videos for himself of experiences he wants to save to help his future self. But he made this video for You. He wants You to know how important quality of life is and how it is possible to achieve.
Thanks Jake for caring about the future of other kids with autism and for showing us what is possible.
At the end of the video Jake talks about a few ways the DI Curriculum has helped him. Jake has learned how to reframe his experience. He could now use self talk to tell himself, “Yeah, this person in this post on social media looks like he has everything: nice stuff, surrounded by beautiful people.” “They have everything,” Jake used to tell himself, but now Jake can reframe this and tell himself, “Yes, they have a lot but so do I. I may have things they wish they had, but don’t.”
Jake also knows he can work toward changing his life, things can get better, he can work to buy possessions, he can hang out with friends, he can change his life situation. Jake no longer feels “stuck.” Jake has a sense of self that is growing and developing.
Just as Dr. Gutstein explains in the clip that follows,“People with ASD need the opportunity to continue to improve and grow... they need a pathway for life long development.”
Thank you Dr. Gutstein for providing that pathway.