Home > Family Services > Putting Self Advocacy to Work

Putting Self Advocacy to Work

This is a blog post by Kim Milla, BA, a Community Companion to an 18 year old young adult with autism.

Sometimes it’s easier to just do a task yourself or make a decision for someone else, especially for those who are unable to speak and act for themselves. However, I think it’s important not to take the easy way out. I think its better in the long run to have conversations with individuals and explain things to them, even if it doesn’t appear that they understand everything you are talking about. If you simplify your wording, rearrange sentences and words as needed, while maintaining a clear solid voice, you can often get your point across and increase their opportunity to be included in a choice.

To increase effective communication, take the time to find their strengths, and then use those strengths to uncover more about their wants and needs. An example of dialogue may be “rice and eggrolls for lunch? OK, so you’re feeling like eating Chinese food. Where would you like to go?” If this is where lack of communication enters the equation then you need to be creative and utilize that individual’s strengths to communicate with them. In a situation where the individual is really strong in directions, I’ve simply said “tell me where you want to go,” or “point me towards where you want to go.” I’ve used this technique before successfully. And sure enough we ended up in front of Wong’s Chinese Foods restaurant. The restaurant was 5 miles away in the next town, and it has the best eggrolls. Simple techniques like that can lead to great successes.

The key is to learn from the individual what will work and what won’t. Don’t let them get away with having you talk for them, button their buttons, tie their shoes, take the wrapper off, or pick out the bread in the supermarket. If you suspect that they can do something or make a choice, stand back and let them do it. I know this sounds simple but it is often overlooked. Let them do the things they can do on their own, and don’t pressure them, even if you think they can do more than they are doing. Sit back and observe them before commenting or jumping in to help. For example, send an individual to the counter to get a pizza box for the leftover pizza, and see how they do. Let them work it out with the server. And don’t impose your way of doing things onto them because you think your way is better, faster or more efficient. Even if your way IS more efficient, it takes away the opportunity for an individual to exercise their choice.

Let’s say you want to go to one more grocery store and you’ve already visited three stores and the individual is tired. If you tell them what you need, you’ll improve the odds of having a successful shopping trip. Validate them, and let them know you understand how they feel. Saying “I know you’re tired, I know we have gone to three stores and they were crowded. We have one more to go and I appreciate you being here with me,” clearly lets the person know you are taking their feelings into account, as well as exactly what you are asking of them.

In summary, remember, nobody (especially a young adult with autism) likes to be told what to do, when to do it, and how to do it. I think it’s also important to allow for and encourage exploration. Let them have a role in expanding their world. Give them choices and create opportunities for them to explore new situations. Be reasonable and understanding when you’re communicating.

  1. Nancy Grant
    February 10, 2011 at 3:31 pm

    how does one become a community companion? or find one for an autistic young adult?

  2. Sandy Scott Greene
    February 10, 2011 at 3:37 pm

    Wonderfully put! I have two boys dx with in the Autism spectrum plus other dx along side it and to read this put a smile on my face. My boys were dx later than most and the struggle with teen years is hard enough. But letting them grow and acknowledge their feelings goes a long way. Ecspecially with our hectic lives! Thanks <3

  3. Angel Phillips
    February 10, 2011 at 4:16 pm

    Thanks a bunch for that information!! I have two boys with autism. One has aspergers & the other one has moderate to severe & he is 18. We are transitioning him into adulthood. It is sometimes overwhelming.

    • Robin Kessler- Chez
      February 10, 2011 at 11:06 pm

      I am in the same boat Angel. My daughter is also 18 & the same place on the spectrum. No matter how uncertain we might be,…….we have made it this far & I am certain we will keep on going. Take heart.

  4. February 10, 2011 at 4:43 pm

    This is a wonderful article.My son does not like to be told what to do.I let him express hisself so he as well as i can explore all his abilities.Letting him have a voice of his own is significant as he mature as a young teenager with autism.I think sometimes as parents we tend to cuddle our children just a little more than needed.Our over bearing ways also can slow growth and maturity.

  5. February 10, 2011 at 9:07 pm

    This is such a good thing to remember and to try to do even at young ages. I know as I’ve tried implementing these techniques our breakdowns are fewer, and it’s very empowering for a person to be able to make choices, even very simple ones or in a simple way, like pointing.

  6. becky llorens
    February 11, 2011 at 7:21 am

    I just came back from an advocacy conference. We have got to learn to let our children be “normal” and let them be heard. It’s so great to read this from someone other than a parent. Thanks for sharing this.

  7. February 11, 2011 at 10:06 am

    Thanks so much. This is very helpful advice and could well be useful for dealing with people in all sorts of situations. It may seem simple, but these are things that often get forgotten and overlooked.

  8. February 12, 2011 at 7:02 am

    I think on occasion an autistic person’s choice may be that you help them with something. I am blind and autistic, and I get very overwhelmed when people insist I do a lot for myself where practical skills are concerned. On the other hand, I do want to make my own decisions in daily life.

  1. February 10, 2011 at 3:34 pm
  2. February 12, 2011 at 7:33 am

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