Structure in the Home

Setting Expectations

Preparation for Big Events

General Procedures

Here is this info as a Printable PDF, in case you’d like to share it. Good luck! Please share any of your own holiday tips if you wish!

Dear Sylvia,
My son is 7 years old in the second grade, and at school is takes too long to copy assignments and complete his work . How can I help him improve? He also randomly forgets to pack up all that he needs to bring home from school.

Hello there!
I have seen many many kids (with and without autism) go through this same phenomenon. First, I’ll ask this: Is he capable of copying them down with a little more time? Could he have some formal accommodations at school (through his IEP) to receive a list of assignments or already-copied out handouts? Could he be officially responsible for doing a few less problems, or shorter writing assignments? Can you negotiate with the teacher for him to complete assignments at home each night?

Many kids on the spectrum take longer to complete their work, and do not want to stop part way through. If they will need to stop partway, I suggest using a written explanation in advance, so they will be prepared. When you get to the homework part of the day, I suggest using a list or schedule of assignments so that your son will know when he will be finished. Feel free to schedule breaks in there if he has a lot to complete.

As for packing the correct things: Are the items he needs based on what day of the week it is? For example, does he always need his reading book on Mondays or is it random? Does he generally need the same basic items? I’ve seen good results from people making a laminated tag on the outside of a kid’s backpack with a picture of something they like, and a list of what to pack up. See this example.

Let me know if this works!

Thanks for writing,
Sylvia

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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

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

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

Structure in the Home

Setting Expectations

Preparation for Big Events

General Procedures

…and this is when I start grinding my teeth. There are a lot of wonderful things about 1:1 services, but an over-dependence on constantly having a personal adult is not one of them. I am too-often reminded of governesses and servants when I watch these failed attempts at professional relationships unfold. Adults who are supposed to be teaching, guiding, and demonstrating independence end up descending into the role of carrier-of-stuff, fetcher-of-forgotten objects, and fall-guy for bad tempers.

To be fair, I’ve totally found myself in this all-purpose, waitress type of role in several of my early direct care jobs. Most places don’t train you how to stay professional, and to empower individuals in 100 small ways each day, instead of taking over.

Saying ‘YOU do it’, is empowering for both sides of a relationship. Should the direct care staff in the example above notice that a kid left his DS behind? Yes. Should said staff be able to predict later trauma when the missing DS is discovered. Yes. Does that mean the direct care staff should trot off to produce the thing? Definitely not.

Instead, consider the following:
“Well, do you want your DS?” asks a one-on-one worker at an activity group I’m leading for the Autism Community Center of Asheville.
“Yeah”, is the response.
“Cool. Go get it.”

In this scenario, the kid is encouraged for knowing what he wants, and empowered to do something about it.
If this conversation is (later) followed up with the implementation of some system for remembering items, then THAT is something I’m totally willing to pay tax dollars for. I’m not as interested in paying for endless babysitting.

I have seen many, many healthy direct care scenario’s (especially at the Autism Society of NC), with professional staff, and good supervision, and I believe that having really good one-on-one support can help people learn to do stuff for themselves…but only when we refrain from doing stuff for them.

In much of my work, I am asked to facilitate or design activities that are accessible to people on the Autism Spectrum. As it happens, this is not rocket science. People with autism do not need to play ‘autism soccer’ or play the ‘autism guitar’. I have not had to create a whole world of activities that did not previously exist. Instead, I tend to support activities that are already fun with clear expectations, and structured choices.

Visual support, or visually based expectations is a way of being respectful to a variety of learning and communication methods. However, all the visual support in the world cannot make a lame activity fun, and planning activities that are actually fun is also a sign of respect.

In the photo above, I am explaining how I want group members to act, using a list of expectations. This particular group of kids can read, and have done groups like this before, so the list is targeted towards them. As they read the expectations, we run through scenarios that could happen, such as not wanting to play a game that is on the schedule. When we read the part that says ‘we can choose which activities we want to do’, I ask them to demonstrate various methods for opting out, such as verbalizing ‘I don’t want to play this one’, or sitting in a place we’ve designated as an ‘I’m not participating right now’ place. These opt-out methods can be supported visually as well.

Usually, allowing participation to be optional is respectful in a recreation setting. However, I have known individuals who respond better to different kinds of choices, such as “what you eat for snack is a choice, but soccer practice is not a choice”.

I’ve found that most people with autism can enjoy a huge variety of activities, despite their purported rigidity and restricted interests, when the activities are explained clearly, and they are empowered with choices about their level of participation.

Self Referencing vs Social Referencing

You and I and other neurotypical people are constantly social-referencing. That means we are using other people’s behavior to guide our own behavior. In a group, we look at other people to see what they are doing. If everyone heads over to look out the window, we sort of want to do that too.

We study each other’s tone of voice and facial expressions closely, and use that information as a social cue for own behavior. In fact, we even mirror other peoples facial expressions when they speak to us (imagine a friend telling you they got some sad news, your mouth will turn down, and your eyes get soft, almost as if you had received the sad news yourself). We ‘instinctively’ know when a class or meeting is almost over because everyone starts rustling their papers and gathering their bags. In contrast, people with autism are often self-referencing, which means they are checking in on themselves, and using their own feelings to guide their behavior instead of using others behavior to guide them.

Examples of social cues (things that you know how to interpret even though no one ever explained them to you):

Self-referencing (and missing social cues) can lead a camper with autism to

You can help a camper who is self-referencing by:

I’ll start by saying that I do not have a child with autism, so I can’t relate to the full scope of your situation. However, most of my kid-related autism jobs involve working closely with families, and I’ve spent significant time with about 50 families. What does ‘significant time’ mean? That means I’m that overly-chipper girl that shows up in the kitchen when you’re still groggy in the morning to help make a ‘morning routine’ schedule. It means I’m the girl who knows the details of the potty struggles. I have had to frantically search the yard with a flashlight to find Thomas the Train, and I cringe when strangers act like autism meltdowns=bad parenting. I know that most parents of a child with autism are sleep deprived, financially concerned, and in hot pursuit of reliable information.

I’m saying all this because I generally think that advice from people who don’t know what you’re going through is condescending, and relatively useless…and there is no getting around it: what I’m about to say can only be categorized as unsolicited advice.

The only thing I can say in my defense is that I made these lists for myself, for when I forget the important stuff about teaching a kid (with or without autism) to be a grown up.

Enough disclaiming. Here it is. Two short, sweet, lists that bring me back to basics:

Do:

1. Address anxiety directly. I don’t always know what makes other people anxious, but I can make some good guesses: transitions, new stuff, and confusing expectations. What should I do for myself when I’m anxious about unavoidable stuff? I should prepare for it, usually in a visual format (think planner, journal, diary or sketchbook). I can prepare kids for this stuff too. When I start dropping the ball on setting clear expectations, complete with transition warnings, everything falls apart.

2. Remember sensory sensitivity. Again, I don’t always know what icks people out, but I can make some good guesses: too much light or noise, crowds, itchy clothes, and too much to look at. I can adjust my own perspective, based on the environment, and I should.

3. Sit back and appreciate the true character of the kid under your care. This one is so important to me, that I wrote a whole post just on this topic.

Don’t:

1. Nitpick. Figure out the one, or occasionally two, most important things for the next three hours, and hush up about everything else. It’s tempting to over-correct, or to feel embarrassed about someone else’s manners and critique them, but 100% of Empower Autism authors agree, it’s a bad idea to nitpick. In the long run, the child will suffer from insecurity, and I will suffer from frazzled nitpicker syndrome (a condition immediately obvious to those around me).

2. Talk too much. For Pete’s sake, I’ve been doing this for years! Why can’t I just remember to give a short verbal explanation, and back it up with visuals? Instead I sometimes find myself blathering on as if I was making sense.

On the occasions that I can keep all of these things in mind, I have more fun, and so does everyone around me. As simple as they sound, these four things are definitely not easy. However, I believe that each one is a concrete way to be respectful of autism.

What are your Autism ‘do’s and don’ts’?