Dear Sylvia,
We have been attempting to teach our son to do some household chores. He uses a picture schedule and after completing three tasks he gets a reward (usually a milkshake from McDonalds). The problem is that he comes home from school, rushes through the chores not doing a complete or very good job (example: he only washes one little spot on a window and then puts “wash living room windows” in the finished envelope). If I try to make him go back and finish he gets upset and angry and tends toward self-injurious behavior. Should I just let it go? –Frustrated in Franklin

Dear Frustrated,
It sounds like you guys have a really great system for planning and rewarding chores. I commend you for setting something like that up–it will serve you and your son well for a long time to come. It also sounds like MOST of the system is working really well, so do not be too discouraged. Here are a few things you might try to tighten up the system a little bit:

1. Add a beginning level to the system where your son ‘learns’ to do the chores (you might have to invent new ones while you introduce this). Take all the chores he does poorly out of the chores list. Start 2 chore boards, where one is full of chores he needs to ‘practice’ and one has chores that he is independent with.
2. Plan a procedure for teaching the ‘practice’ chores. You might consider using a Jig, or another method of visually structuring the task so that he completes it properly. For washing windows, you might put 3 washable marker stripes down the length of the window and teach him to wash all three areas (including the stripes). Then fade out the stripes.
3. Create a ‘check off’ list of the chores he is still learning. He can get a chore checked off the list when it has been inspected by you. Then that chore can get moved to the independent list. If he starts backsliding, you can always move it back to the ‘practice’ chore board.
4. Start a routine using your picture schedule where he does one ‘practice’ chore each day with you, and you walk through the specific steps of that chore (using a schedule if you want). If there are chores he is independent with, he can do those too. The practice chore can be one of the chores he uses to earn his reward.
5. If he becomes angry with you for changing the routine, STICK TO YOUR GUNS! You won’t be doing him any favors by accepting a standard that nobody else in his future will accept. If you can explain the chores clearly, and reward him for doing them right, he will come around. See this handout on managing behavior for specific techniques for sticking to your guns
6. As always, you may have to explain this new chore system to your son in a visual format.

I really hope this helps! Please email or call me with any further questions. SYLVIA

You can ASK SYLVIA about autism by clicking on the ‘ASK’ tab above.

Dear Sylvia,
My daughter is 10 and I am already worrying about puberty and especially the onset of her menstrual cycle. How can we prepare? She doesn’t really tell us when she gets hurt and she is already unimpressed with showering, tooth-brushing and other hygiene routines. –Scared for Her

Dear Scared,
This is a very common concern, and I’m really glad you wrote in. Many kids (with and without autism) are confused and unprepared for puberty. It’s great that you want to help your daughter be ready. Here are some things to try:
1. Get this book: Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism
2. Read this free HANDOUT FROM THE AUTISM SOCIETY OF AMERICA
3. Use the written explanations in the book to help explain about puberty and periods to your daughter. Set a time each week, or each day to work through the book, and put it on your daughters schedule.
4. Write down an action plan for you and your daughter for the first time she notices her period. Make sure to include specific step by step instructions such as ‘wipe, get dressed, and tell the adult who is helping you (Mom, staff person, teacher, etc)’. Also mention that she will not be in trouble.
5. Continue to practice the hygiene routines you already have in place, and do not be afraid to add new standards early (such as wearing deodorant daily). Stick to your guns about your hygiene routines so they become second nature. It will not get easier to fight those battles during puberty.

You can use your established weekly or daily check-in’s about puberty to move into speaking about sexuality issues as she gets older. I hope this helps! Please email me with follow-up questions if you have them.

–Sylvia

This is the second edition of Ask Sylvia, and I’m having a lot of fun with these! You can submit a scenario by clicking on the ASK tab above.

Dear Sylvia,
Whenever I want my teen to leave to go somewhere, he will say he is ready, but when it is really time to go he is not ready. He thinks the appointment time is when you start getting ready. If an appointment is at 2pm, then in his mind, that is when you get ready. How do I get him ready for events and appointments? This happens even when it is something he really wants to do. (He can read and understand a paragraph without help—I’ve tried nagging him, giving him responsibility, and taking things away). –Expecting More

Dear Expecting More,
Understanding the concept of time (and applying it in a practical way) is a common challenge for folks on the autism spectrum. You could try changing the way you speak about appointments, and refer to the time you start getting ready (“We’re going to get ready for school at 6:45am” instead of “We go to school at 7:15”). I would also start presenting a written outline of what needs to be done to get ready. Here is a photo example of what I mean. Present the schedule earlier in the day and go over it. Tell your teen that you will tell him when it is time to start getting ready, and see if he will check off the items as he works through the schedule. You might have to write him a note explaining about ‘getting ready for appointments’. See this handout for examples of written explanations, and maybe this one about teaching schedules. GOOD LUCK! I’d be excited to hear how it works! –Sylvia

So, I get a lot of questions from families about helping their children with autism. Sometimes people want to know about changing behaviors, improving school performance, finding friends, dealing with puberty, or clearer communication. I know that for every question someone asks, there are additional folks who want to hear the answer…so I added a feature to the website where you can submit your questions, and I will answer them online. I will not include names and I will edit out identifying information. If you click on ASK above, you can see the form.

Here is the first question:

Dear Sylvia,
How can I get my 9 year old son to complete daily activities like homework and cleaning his room without fear of provoking a backlash or even a meltdown? He does well in school when he finishes his assignments and I know he can clean his room and do other chores because he has done them in the past. Lately he just refuses to take directions from me. –Tired of Walking on Eggshells

Dear Tired of Eggshells,
Sounds entirely frustrating! I agree that your son should be able to accomplish some daily explanations without melting down. You mentioned in your submission that your son uses a schedule in the morning and earns time on his DS on the way to school if he finishes his morning routine. Have you tried a similar system for the afternoon? You might make him a list of stuff to do when he gets home (including some downtime) and let him earn some stuff he really likes such as videogame time. The schedule and the reward-earning could take some of the power struggle out of the afternoon, and add some predictability. Check out these handout on Structure in the Home and Rules and Rewards for a place to start brainstorming.
For example, his afternoon could go like this:
get off the bus
snack
30 min choice time: draw, go outside, play with trains (no TV or video games)
Do Homework
–Homework done? 20 min of video games
Clean room
Dinner
–room clean? 20 min of video games

You may need to present this new system to him in writing so he can get used to the idea. Here is handout on written explanations<.

GOOD LUCK! --Sylvia

The Spectrum by Dragonfly Forest is my favorite new project! It is so gratifying to work on something that is so much fun for everyone involved! Our interns are talented and dedicated, the activities they come up with are inspiring and hilarious, and the kids are so relieved to be somewhere that is clearly explained and, most importantly, super entertaining.

You can read our blog and see photos of us having a blast.

Ben Mason is an NC local with a creative designer with a unique mind. I’m impressed with the way he expresses his ideas. Check out his new paper on cognitive media!

Here is a portion of his paper that I like:

Milestones in informative artifacts, such as the advent of
written language, have introduced new cultural and social
dynamics to the human race. From the womb to the grave,
the things that we are close to, that we experience
conversantly, contribute continually in defining who we are
as individuals (Myers, 2008). As more becomes virtual,
augmented through digital technology, new media have an
increasing impact on personal thought and expression
(Schniederman Et Al., 2006). These shifting information
platforms also accompany new modes of interpersonal
development, challenging the relative boundaries and
assumptions of cognitive ability and disability. Building on
our genetics, our exposure to richer environments and peers
elaborate not only our personal potential, but act deeply on
the cultivation of our in-born humanity (Bandura, 1986).
When these processes break down, as in the socio-cognitive
disabilities of autism spectrum disorders, we see that they
reflect the core of our behavior, touching the patterns of our
neurons and the very architecture of our brains.

Read More…

Thanks for sending me the paper, and letting me post it, Ben!

The holidays are not always easy for people on the autism spectrum. Holiday parties, lengthy meals with relatives, crowded houses, and gift-anxiety can be really stressful for people on the spectrum. The behavior expectations are different, and familiar adults are often acting unpredictably, and generally have less time to patiently explain what is going on. Quiet alone-time is at a premium for everyone, and most people are a little edgy. In fact, sometimes the holidays are not a ‘holiday’ at all for people with autism. Here are a few tips that may diffuse some holiday drama in your family.

Structure in the Home

Setting Expectations

Preparation for Big Events

General Procedures

Jess at VERVE Magazine was gracious enough to profile me, and Empower Autism in the November issue of her Asheville mag. One of my latest and greatest projects is The Spectrum, which provides social-recreation opportunities for and with people with autism. The lovely Kimberly Miller of The Asheville Club at 151 (schnazzy condo’s ‘atop’ the Hotel Indigo in Asheville) has worked her tail off to help set up an awesome fundraiser on November 6th!

The article in VERVE was totally well-timed to help us promote the event, and I would like to cordially invite all of you, dear readers. Let’s drink wine for autism!

READ THE ARTICLE

COME TO THE EVENT

In March of 2010, an article by Nancy Bagatell appeared in a special issue of Ethos: Journal of the Society for Psychological Anthropology (Vol 38, Issue 1).

It’s called From Cure to Community: Transforming Notions of Autism, and it’s solid. Here are some excerpts:

“The purpose of this article is to explore how individuals with autism are challenging the widely accepted biomedical views of autism and forging an autistic community. Here, I purposefully use the terms autistic and autistic community instead of person-first language (i.e., person with autism). This is the preferred language of the members.”

I like how she focuses on what adults with autism are doing/thinking, instead of what neuro-typicals think about people on the spectrum. I also like it that she goes ahead and says ‘autistic’.

Later in the article, Bagatell draws attention to the increasingly unwieldy range of the autism spectrum, and a trifecta of events which have helped to shape the autism community. Check it:

How is it possible that an autistic community has emerged? Given that, from a biomedical perspective, autism is characterized by significant social and communication deficits and repetitive and stereotyped behaviors, restricted interests and activities (American Psychiatric Association [APA] 1994), people with autism would seem to lack the skills essential for the establishment and maintenance of a community. The emergence of the autistic community can be linked to three historical trends: (1) the broadening of the autism spectrum to include HFA and AD; (2) the emergence of the disability rights movement and, specifically, the self-advocacy movement; and (3) the explosion of computer technology, specifically the Internet.

Good work, Nancy Bagatell. It’s really good to see the community pride trend documented in the scientific literature. Want to read the whole article? DO IT.

Last spring, the Autism Community Center piloted some fabulous activity groups which were designed for people on the autism spectrum. A lot of people had a great time attending cooking, music, theater, art and hiking groups, but, unfortunately, the center closed due to financial challenges. See a video from our old writing and illustrating group!

This fall, Empower Autism is partnering with Dragonfly Forest to bring those activity groups back! We will run groups for 6 week sessions, starting mid-September, under the name ‘The Spectrum’. We have added exciting new clubs like Urban Outings, and are bringing back old favorites like Video Gamers Club, and Hiking Group. Groups and Clubs are generally about 1 hour long, and meet once per week. People will be able to register fully online if they wish, and sign up for more than one group.

Stay tuned for more details on this exciting new partnership!