Autism & Self-Advocacy

How do we teach children on the spectrum to be confident and independent self advocates? When children are young the parents or caregivers have the responsibility of fighting for health insurance coverage so that they have access to all the appropriate therapies that they need, for example. However, as Sharon Fuentes, a blogger in Northern Virginia and a mother to a boy with Asperger’s, point out, “I’m not always going to be here. My main goal in life, for any child, is to raise an independent, responsible adult who is able to function in the world and be able to contribute to society. We all have to advocate for ourselves. The reality is that with special needs kids, if they able to learn these skills just by watching, they would. But they can’t so we have to teach them.” 

Parents can help their children be better self-advocates, as they grow older. First the child should be aware of what his/her needs are as well as her specific strengths and weaknesses. Jim Ball, executive chairman for the national board of the Autism Society says that you want to make sure that your child also knows how to filter the information they give out about themselves. “They are so trusting of people and so open and honest about who they are, which is one of the qualities I love most about them …so you have to teach them that there is a time and place to discuss it.”

Here are some tips on teaching your child to express their diagnosis and express their specific needs

– They should understand the difference between needs and preferences. For example, for Fuentes’ son, who is 13 years old, she had to explain to him that sitting close to his teacher in class was a preference, while having a quiet space to retreat and collect his thoughts when he gets overwhelmed is a need.

– Writing a note to their teachers. For older children especially it can be a useful exercise to write a letter to each of their teachers to explain who they are, what they like and dislike, what causes them stress, and what they most need to succeed. This is not only great for their own self-awareness, but also a great resource for the teacher.

– If it’s possible, include the child in their own Individualized Education Plan (IEP) meetings. They can voice concerns over situations that may be problematic for them as well as gain a better understanding on how things work. “Just asserting what they want is important for anyone to be able to have a sense of self-worth, and a sense of confidence that you can share what you want and people are listening to you,” says Fuentes.

– It’s important to talk about who are “safe people” when it comes to sharing information about themselves. They do not need to tell everyone, including all of their peers, where someone may use the information against them in the case of bullies, for example.

– There are many books that can help with advocacy. Jim Ball recommends “Ask and Tell: Self Advocacy and Disclosure for People on the Autism Spectrum,” edited by Stephen Shore.

​Stephen Shore will be one of the many presenters speaking on Self-Advocacy at our upcoming International Autism Conference! Join him and others by clicking HERE!