October 25, 2012

Supporting Individuals With ASD Through Puberty

The following is written by Sarah Kunkel, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. Sarah provides a discussion on the issues surrounding puberty for individuals with autism spectrum disorders.

Puberty can be one of the most confusing and overwhelming times for most teenagers, as well as for their parents. Between pimples and body odor, raging hormones, and middle school, it is a wonder anyone survives this tumultuous time! Throw in the some of the unique challenges that most individuals diagnosed with an autism spectrum disorder face (such as sensory issues, difficulty with social cues, and trouble deciphering the complex world of communication) and the successful transition through puberty can seem darn close to impossible.
An entire encyclopedia could be written solely covering the many challenges teens and pre-teens diagnosed on the autism spectrum face during puberty; however, here we will discuss the top three concerns of parents for this particular article. Those topics are (drum roll please) Hygiene, Personal Space, and Dating.

Hygiene: Smell You Later!
Ask any middle school teacher and they will agree that hygiene is a challenge for many kids going through puberty. And ask any middle school student and they will agree that hygiene problems are a challenge for any student’s social status. So, hygiene habits can be very important skills not only for their health, future independence, and job worthiness, but also for their social life and experiences.  Here are some useful tips to create more independent hygiene habits.

1.    One Step at a Time - As with any habit, learning to independently complete hygiene skills on a gradual basis can drastically minimize the amount of stress. So instead of teaching them 5-10 skills all at once, start early with only one at a time.  This will help you avoid stress and reduce the chances of hygiene creating an issue between them and their peers. I don’t think I need to remind anyone how mean kids can be in middle school.

2.      Step Away (and Leave Extra Time) – Many of us have the tendency to be overly helpful, especially on those mornings when everything has gone wrong and you only have 10 minutes to make the 20 minute drive to Billy’s school. But in the long run, everyone involved will be happier if you can gradually step away from completing every part of every routine for him. Start with small pieces of the task, such as Billy puts toothpaste on the brush and you help with the rest of the task. You can then gradually have him complete more pieces of the task until he can do it independently. You will need extra time for Billy to brush his teeth at first, so set the alarm clock a few minutes earlier.

3.   Make It Visual - Don’t forget that most individuals on the spectrum are visual thinkers. Creating a poster of the steps to getting dressed is likely to help Amanda complete that task independently.  And using a checklist of chores in the morning routine can be more helpful than an adult rattling off a laundry list of things that she needs to do. I bet it is less stressful for you too! Just don’t forget that you will probably need to teach them how to use the visual at first and avoid creating a visual that is too childish or immature, especially if the individual’s peers may see it.

4.      Make it Mean Something – One factor that may be easy to overlook is helping individuals on the spectrum understand the importance of the hygiene task. If someone told you that you had to hop on one foot while rubbing your belly, tapping your head, and singing “The Itsy Bitsy Spider” but didn’t tell you why, you might not be very motivated to complete the task either. But if making and keeping friends or dating was dependent on the task, then you may be more motivated to do it every morning. Social stories are a useful tool for explaining these reasons. They can help describe a situation in terms of social cues and perceptions while providing options to students about how to respond. These are available in books, on the Internet, and some of the best stories are ones written by parents, as they incorporate individualized information about the task and can also include pictures of the individual.

5.   Sensory Issues – Sensory aversions such as oral sensitivities, aversions to certain tastes or smells, can create barriers to certain hygiene tasks. It is important to pay attention to any issues with completing a task that are due to these aversions.  Find alternative products that avoid the factors making the experience aversive and if possible, allow the individual to choose the flavor of toothpaste or scent of deodorant they would prefer. To go one more step further, it can also be helpful to incorporate the individual’s sensory preferences or interests in the task.
A good resource for further information regarding hygiene and puberty that includes social stories on the subject matter is Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism by Mary Wrobel. This book is available for loan in the WV ATC library for registered families.

Personal Space
Another important concern of many parents and professionals involves teaching individuals on the spectrum about respecting other people’s personal space and other people respecting theirs.  The importance of understanding and respecting boundaries can help an individual interact with peers and people they have an intimate interest in, report misconduct by others, and avoid engaging in sexual behavior that could be illegal.

1.      Watch the LanguageIt is important to use the correct anatomical names when educating individuals on the spectrum about their bodies. There are not many grown men I know walking around referring to their penis as “pee-pee,” and neither should individuals on the spectrum if we truly want them to be members of their peer group. In addition to the social inappropriateness of these nicknames, these terms can make it very difficult for an individual to report sexual victimization and especially to get any type of legal action taken against the perpetrator.

2.   Private Areas When teaching about private areas on the body, there is a tendency to focus on the difference between the areas we consider private, such  as those covered by a bathing suit, and those other areas that are not. This is an important distinction to avoid inappropriate exposure of an individual’s private areas to others. However, when teaching the concept of bad touch versus good touch, it is important to go a step further. Just because someone does not touch a person in a private area, does not necessarily mean it is a good touch. It is important to teach individuals on the spectrum that unwanted touch, even a hug or hand on the shoulder, is a touch that they do not have to accept. When teaching this concept, through social stories, video modeling, and/or role play, there can be different sets of rules about dealing with an unwanted touch to a private area and one to a non-private area. Role playing can be an extremely useful tool for this, as it can help them feel more comfortable with the script of telling someone they do not feel comfortable. It can also help the individual become an advocate for him or her, which is additionally important in expressing to others what sensory stimuli are aversive to them.

3.    Hugs There are important boundaries surrounding hugging that can be useful to teach, even in grade school. Hugging is something that some individuals may be aversive to while others may crave. Teaching the rules about hugging could help an individual with autism avoid allegations of inappropriate touching by them and help reduce their chances of becoming a victim of sexual abuse. Creating a concrete visual about the different roles of people in the individual’s life and the rules around personal space and hugging can be extremely useful. One idea is to use a visual of 4-5 circles in a bull’s eye formation and create different categories of relationships. The categories could include family, best friends, friends, people I just met, and strangers.  Arrange the categories with the people the individual is closest to in the center circle and work outward. Then place people you know in the appropriate category and list the personal space rules associated with that category. This can be a helpful way to make the rules less ambiguous around hugging and other personal space issues.

Additionally, if an individual seeks out hugs, it may be important to begin to encourage them to ask first. There are many people individuals may be around throughout their day that are not in their innermost circle. It important that this boundary is set, especially as they approach an age when their peers are not seeking out hugs in the same way.  We often see hugging as sweet and innocent, however being proactive about teaching appropriate boundaries can help ensure an individual does not become a victim or a perceived perpetrator.

Despite the complexity of this topic, this section will be kept short and sweet. There are many issues to consider within the realm of dating, such as flirting, stalking, going on a date, intimate behavior, etc. Much of dating involves unspoken rules that even the rest of us have often found hard to decipher when we first started dating, and likely still find baffling. Wading through this sea of unspoken and ambiguous rules can be exhausting. Therefore, it is important to utilize social stories, video modeling, and role playing to help establish certain boundaries. For instance, creating a video model may be an excellent way to demonstrate the difference between flirting and stalking. Some individuals on the spectrum may have difficulty perceiving kind words and minimal attention from a romantic interest as reciprocated romantic interest from their beloved. A factor compounding this issue is that the other person may not want to bluntly make it clear that they are not interested. Hence now, you may have an impending disaster on the horizon, involving the principal, other person’s parents, and allegations of stalking. Some useful strategies for preventing such issues are listed below:

1.      Role Play – Practice makes perfect. This strategy can be useful when preparing to ask a girl to a dance, figuring out what to talk about on the first date, or feeling comfortable telling a boy that she does not want to be kissed. If possible, it can be extremely effective to use a group of peer models to demonstrate the behavior and then help the individual practice. It is important to carefully select peers that are caring, helpful, and good themselves in these scenarios.

2.      Be Proactive – Use whatever media you have available or create your own video models of the subject, whether it is as simple as how to hold a conversation or as complex as the difference between another person flirting or acting as a friend. Video models do not have to be overly complex or highly produced. The important thing is that they provide the necessary social information, a possible script, and an opportunity to discuss the factors that make the situation successful or not.

3.      Be Blunt – Consider speaking bluntly with the individual about hard topics. Whether it is the other person not being interested or about the sexual matters. Additionally, encourage the romantic interest and other people involved in the situation to be blunt to the individual about the facts. It may sting a little, but not as much as expulsion, pregnancy, or jail.

The complexities of puberty and related issues are numerous.  Hopefully some of these helpful tips will lessen the stress of puberty. Thinking ahead about issues to come, laying out concepts in a concrete and literal manner, and treating individuals on the spectrum at the same level of their peers is likely to help them make it through to the other side.