Teens with ASD: Self Advocacy and Self-Esteem
The future depends on what we do in the present. - Mahatma Gandhi
Self-advocacy, or speaking up for one's self, is a very important skill for people with disabilities. But it can also be very difficult. Self-advocacy requires certain skills that a child with autism (especially one who has had many years of ABA - and therefore been taught to just do, without thinking) will likely have to be taught. They do not learn these skills intrinsically like their non-disabled peers. This lack of self-advocacy affects self-esteem in a negative way.
There is an official movement started by people with disabilities to assert their self-advocacy rights, which is often fought by the medical industry. They contend they know what's best for everyone so the disabled shouldn't be allowed to make their own decisions. Parents however have to work with their kids to help them make good, sound choices for themselves. Yes, some things are non-negotiable - you must eat, sleep, bathe, be educated; and you must not do illegal things, hurt yourself or other such examples.
Of course some children are unable to make informed important choices but just because your child has a disability doesn't mean he or she can't ever have any choice about their care, their clothes, their food, and much more. You may be surprised how many opinions your child may have, when given the opportunity to choose.
http://thechp.syr.edu/thoughts.htm is a good page written by a person with high-functioning autism. Not all of our children are so high functioning though and may be incapable of making choices past what they want to wear or eat that day. If you start early by giving your child choices, he or she will better understand the concept of self-advocacy, even if it takes years or decades for them to learn. Please consider that people who are able to have some say in their lives are bound to be happier in them.
The ARC has programs in every state for self-advocacy, with great information on their state websites. You can start at the National ARC website or Google "ARC self-advocacy and your state."
Self-esteem is very important to living a full, rich life. You cannot teach self-esteem but you can give your children the tools to feel good about themselves by enabling to learn and do. Getting them healthy is the first, very critical, step in your child's self-esteem journey. We regard diet and medical treatment as the foundational step to wellness. Think about it. If children are sick, they cannot learn, so they feel 'dumb' or 'inadequate' and start, or continue, a negative pattern of self-thought, increasing anxiety and decreasing self-esteem.
Teaching skills in a way that the child succeeds at least 80% of the time is another way to build self-confidence. Using a lot of positive reinforcement, and adjusting the teaching methods or style if a child isn't being successful is key - achieving a pattern of success teaches the child to try and that they can succeed, thereby building self-esteem by learning they can learn and do things.
Watch what you say
Parents, caregivers and teachers are the first and most important builders of self-esteem for children, so please be cautious with your children because what you say does matter. What you say matters very much. Please read this amazing blog post by "Single Dad Laughing" called, "You just broke your kid. Congratulations."
I had the great fortune to meet a handful of verbal adults with autism and their parents when my son was newly diagnosed. What I learned from them in a few hours has stayed with me and has served me, and my kids very well over the years. First and foremost, don't ever think your child cannot hear or understand you just because he's not looking at you. I have watched parents do this over the years and always stop them and explain that even if he's not looking at you, I assure you, he can and does understand what you are saying about him. So if you talk about all of his problems and how much stress he causes your family, or how much you hate autism and then say he has autism, he will grow to know you hate what he is. Be forewarned and be careful. While I am not really a stickler for “person-first” language it serves as a reminder that your child is a person first, before his diagnosis or challenges. If you behave as though he is autism first and a child second, he will feel that.
Not being able to talk is not the same as having nothing to say
Being nonverbal and having autism presents a huge challenge for our kids and for us as parents as we try to communicate with our kids. If only to make sure they are safe, healthy and happy. Giving your child the tools to communicate is more important than almost anything. Even if your child will never speak a single word in his or her lifetime, there are incredible tools to help them communicate with you and the rest of the world. Read about them here.