by Patricia Romanowski Bashe, MSEd, BCBA
Autism Asperger’s Digest | January/February 2012
What do you think of when you hear the word independence? For many parents of children with Asperger’s Syndrome (AS) and similar autism spectrum disorders (ASDs)—pervasive developmental disorder-not otherwise specified (PDD-NOS) with solid cognitive and verbal skills or high functioning autism (HFA)—the word is both charged with promise and fraught with uncertainty. Though every parent knows that feeling to some extent, let’s be honest: for those raising neurotypical (NT) children, it’s different. For them this process seems to come naturallyThis is not so for parents of children with ASD. When asked to describe where they would like to see their children as young adults, most parents speak of college or job training, a career, and living on their own. Most of all they wish for their children to have the skills and supports that they need to be agents of their own lives—to be free to make things happen for themselves without an inappropriate amount of assistance from others. Achieving this requires a strong adaptive behavior repertoire, something that is not based on intelligence as we often think of it (see sidebar on page 25) and usually is not taught in school. These are the daily living skills most NT kids seem to learn “by osmosis” but must be systematically taught to many kids with ASD.
The term adaptive behavior encompasses what I call “independence skills” and includes everything from dressing, self-care, cooking, and housekeeping to how to use money, respond in an emergency, and travel within one’s community. Independence is more than just “knowing how to do something.” It requires learning not only what to do but also when, why, how much, and when to stop and start. Being truly independent means being able to recognize that a different response might be a better choice, then change course, and do what it takes to accomplish the task. Learning this demands patience, practice, and a willingness to risk and work around failure.
The Benefits of Independence Skills
It is easy to imagine what independence will look like for your child with ASD at some point in the future. But what about today? Two things we know about these skills is that they can take years to learn, and that children with ASD typically begin acquiring them later than usual. The time to start is now. The good news is that teaching independence skills also yields some important bonuses that are as important as the individual skills themselves.
- Independence reduces the need for assistance and the involvement of others (parents, teachers). When children lack age-appropriate independence skills, they encounter two possible scenarios regularly. In the first they simply do not do what the situation calls for, be it buttoning one’s shirt correctly, answering the telephone, or jotting the night’s homework assignment in the planner. In the second scenario they manage to do them, but only with the prompting, guidance, help, or assistance of another person—usually an adult.
Our concerns about social development and peer acceptance often lead us to social skills training and highly structured social opportunities, which are certainly important. However, there is evidence that peers view what I call “the assisting presence” of adults as a major indicator of a child’s difference (Boutot 2007). We sometimes fail to see that the constant presence of an adult, no matter how kind, can discourage peers from approaching or including a child. Another side effect of such help is that the child spends more time—and gets more practice—engaging socially with adults as opposed to peers, where the experience is so desperately needed. Having basic age-appropriate skills prevents others—especially peers—from making false assumptions about your child (e.g., he is a “baby”).
Independence Tip: The goal of providing assistance should be to teach skills, not to do for a child what it is age appropriate for him to do for himself. Any intervention designed to help should also include plans for teaching the missing skill and fading the assistance. Accept that it’s better for your child to fold the towels less than perfectly than it is for the towels to be folded perfectly by someone else.
- Teaching independence skills the right way bolsters self-esteem, confidence, and the willingness to try new things. Studies have shown that the most effective praise specifically identifies what the child did to achieve the goal, not the possession of an inherent talent or ability (Bronson & Merryman 2009). Children who are “smart,” “creative,” or “talented” know that these are aspects of who they are over which they have no control. When typical children were praised for things they did not control, they became less confident and more aversive to risk. On the other hand, children who were praised for things they did control—their effort and the concrete results of their work—applied more effort in future tasks and were more willing to take risks.
Children who are indiscriminately praised for things like “being smart”—but not given the skills or opportunities to garner compliments for skills in other realms—are left with the erroneous impressions that “being smart is enough” or that “intelligence” is the most important asset they possess. One ironic result is that these kids feel even worse when they realize that they cannot do the simple things that peers they consider less intelligent do easily.
Independence Tip: Be your child’s greatest cheerleader, but make sure that you cheer for the right play. Make your praise behavior-specific (i.e., identify what your child did) and be sure to mention the skills applied in the process, not just the product. “Good job” and “You did great” blend into the sonic wallpaper, especially since kids with special needs hear these dozens of times a day. Be enthusiastic and descriptive: “Hey, you really focused and took your time putting away the groceries,” or “Thanks for remembering to put all of your school stuff in your backpack tonight so we don’t have to worry about it tomorrow morning.” These comments recognize the aspects of a task that are typically more challenging for someone with an ASD and—most important—that he or she can control.
- Independence provides natural reinforcement because it feels good to feel good about yourself and what you do. Children with special needs often inhabit environments that are artificially rich with reinforcement—from praise and high fives to tokens and more tangible rewards. This is neither good nor bad, and it is usually necessary for valid reasons. However, growing up, they will encounter situations where such reinforcement is either unavailable or inappropriate. For example, a fifth grader has grown accustomed to five minutes of computer time every period. But then he moves on to middle school, where accessing this reinforcement reduces learning time and sets the child apart in the eyes of peers.
Independence Tip: Expanding your child’s independence skill repertoire—and providing behavior-specific praise—means that there are other, more age-appropriate ways to access reinforcement. In the case of the fifth grader example above, it could be handing out papers to classmates, taking a note to the principal, or joining classmates in a small clean-up project.
- Independence increases opportunities to focus on more complex concerns such as socialization, school or job responsibilities, and handling the unexpected. We know that socialization, managing the “hidden curriculum” (the social rules we all learned without ever being actively taught), and dealing with surprises are difficult for kids with ASD. There is no simple shortcut to developing these skill sets. At the same moment “higher order” social-skills deficits and independence-skills deficits collide. It may be difficult enough for your eight-year-old daughter to follow her peers’ happy chatter before going out to recess. Why add to her burden—and leave her to be the last one to get to the playground—because it takes her three times as long to button her coat and put on her gloves? Or because she needs the teacher to help her? Rather than being separate from social skills, independence skills actually provide a foundation for them and increase access to the people, situations, and places your child wants to be.
Independence Tip: When it comes to how smoothly your child’s day goes and how easily he can access the experiences he wishes to have, the little things really do mean a lot. Resist the temptation to overlook teaching basic independence skills because you (or someone) can help or because your child is not yet involved in situations where having these skills would be expected. Most of the independence skills children need can be taught successfully at home by parents using scientifically derived strategies, based on applied behavior analysis (ABA). These focus on positive reinforcement, approaches designed to fit how kids with ASD learn, frequent and correct practice, and consistency.
- Independence increases chances for future success in all aspects of life. While awareness and understanding of ASD have grown immeasurably in the past decade, the basic requirements of achieving a happy, satisfying life have not. “The three things that we want our children to do in life are the things that adults [with ASD] tell us that they want to do in life,” says Dr. Ami Klin, chief of the Division of Autism and Developmental Disabilities at Emory University School of Medicine. “They want to live independently. They want to have a vocation, a profession that can give meaning to their lives. And they want to have meaningful relationships.”
Independence Tip: As you think of your ten-year-old who still isn’t tying his shoes, or your five-year-old who still drinks from a sippy cup, or your teen whose self-care routine still requires your daily monitoring, think of teaching these skills as a gift to your child and his future. Using these skills regularly, and constantly learning new ones, sends your child a message that many kids with special needs don’t hear nearly enough: “You can do it!”
Patricia Romanowski Bashe is the author of The Parents’ Guide to Teaching Kids with Asperger Syndrome and Similar ASDs Real-Life Skills for Independence (Three Rivers Press, 2011) and co-author of The OASIS Guide to Asperger Syndrome (Crown Archetype, 2005).
References
Boutot, E. 2007. “Fitting In: Tips for Promoting Acceptance and Friendships for Students with Autism Spectrum Disorders in Inclusive Classrooms.” Intervention in School and Clinic 42 (3): 156–61.
Bronson, P. & A. Merryman. 2009. NurtureShock: New Thinking about Children. New York: Twelve.
Cederlund, M., Hagberg, B., Billstedt, E., Gillberg, I. & C. Gillberg. 2008. “Asperger Syndrome and Autism: A Comparative Longitudinal Follow-up Study More than Five Years After Original Diagnosis.” Journal of Autism and Developmental Disorders 38 (1): 72–85.
Klin, A., Saulnier, C., Sparrow, S., Cicchetti, D., Volkmar, F. & C. Lord. 2007. “Social and Communication Abilities and Disabilities in Higher Functioning Individuals with Autism Spectrum Disorders: The Vineland and the ADOS.” Journal of Autism and Developmental Disorders 37 (4): 748–59.
Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.
Thank you everyone for your feedback! It is important to know what your ideas and thoughts are because you are the reader of this magazine. With that in mind, please be tasteful in your comments. Temple Grandin is the author of this article. We simply post it up for everyone to read. The article is simply what Temple was taught and what helped her. She is clearly stating that it is important to have manners.
I’m sorry but I disagree, I am recently diagnosed with autism and was raised in the good old fashioned way. Can safely say it has destroyed me. Constantly being told I’m doing things wrong and should do it another way destroyed my self confidence. I was left feeling I was a bad person for not knowing these things like everyone else. I felt broken, wrong, stupid. I became unable to make any decision for myself because I would probably be wrong. I have suffered years of depression, eating disorders, anxiety and self harm because of the way this style of parenting made me see myself. I don’t blame my parents, I love them very much. They did the best they could with a child they didn’t know was different. They saw this as the correct way to raise their children. I have taught my children manners etc but in a kind way, if they choose not to do it I don’t chastise them, I let them know that it’s their choice but it will affect the way others view them. I explain why we do things and I never tell them what they do is bad or wrong. This does not mean they get away with whatever they want. I have been complimented many times on the behaviour of my children. To me, the only correct style of parenting is one which treats each children as an individual and tries to view the world from their point of view. I want to build their confidence not destroy it. I can learn from the techniques of so-called 1950’s parenting but I will also learn from the many mistakes that were made.
Any article that uses “…with autism” is immediately suspect on its face.
I am a thirty-six year-old white man who never gets a second glance in his local area, and yet the words “…with autism”, or separationist language as I call it, induce symptoms in me that are consistent with PTSD. Even describing this reaction to people makes my physical form twitch.
So basically what we have here is more parental units writing their spurious opinions about how to treat autistic people, using language that an overwhelming majority of autistic people find offensive, and from a perspective of not being autistic themselves.
So you will have to pardon me if I decide your advice is not worth following.
Dean
You are so very very wrong in your assumptions about this author. Temple Grandin has autism. She is probably the most highly respected writer and speaker today communicating about autism from the perspective of the people who have it.
You might find it interesting to read more of her writing. Her website address is given.
Dean, not to argue but just to point out, this article is written not by a parent but by Temple Grandin, PhD. She is also autistic and while you may not identity with her choice of wording, that does not devalue the entire article’s validity.
She raises very salient points, no matter how you feel about identifying as autistic. x
I always amazes me and half annoys me when people compliment myself or my sons for having good manners.
Sincere compliment: “Oh ,you’re boys have such nice manners”
Expected response: “thank you, we try!”
My internal response (usually;) “they better….”
It is an expectation, not a suggestion. My 4 yr old and my 7 year old (high functioning autism diagnosis) and even my 2 yr old all say please and thank you, excuse me and you’re welcome. They also know how to properly introduce themselves including shaking hands. Some rules and expectations must not and should not be adjusted. That does not mean they should not be taught in a different way than is currently being used most often. We have become so worried about hurting feelings that we often lose sight of direction that is clear and concise.
My 7 yr old has been having a really tough time at school lately and came home after a particularly difficult day that included talking to the principal. When I got down to it with him as to what had happened and what needed to change all he could do was go over the things he was told NOT to do…..I had to repeatedly, and in different ways ask him what he needs to do, what actions should he take. It took a very long time to help him understand that knowing what not to do and know what to do are two very different concepts. Two concepts that are not being focused on properly. There is nothing insensitive or dominating about directly telling a child what to do, as long as you are there to show how them when they need help!
The best I advice I have read/heard in a long time.
Awesome article. We have tried to raise our (five) children the same way. Although, I am ashamed to admit that the handshake was one we missed. We always get compliments on how well-mannered our children are. When our youngest was diagnosed with Asperger’s at age 7, we did not change our parenting strategy in any way. All the same rules applied to him as did to the older kids. We have never let him use ASD as an excuse for bad behavior and we feel he is better for it.