Ages (11-14)

Education and Employment

Transition to Middle School/Jr. High

The years from 11 to 14 bring many changes, including transitioning from elementary school to middle school or junior high. This generally means changing to a new school with a larger school population and having multiple teachers in a day instead of only one or a few. This is the time when expectations are raised and students are encouraged to take on even more accountability, self-direction, and self-advocacy.

For those on an IEP, decisions as to where your student will be placed will be discussed and made by the IEP team before the end of the school year. The goal is to keep your student as close to home as possible in the school that is the most appropriate educational setting. Click here for a list of school types and options.

As you write IEP goals, keep in mind the way middle schools function. Some things you might list as a goal in an elementary setting will not be effective or appropriate in a secondary situation. Realize there may not be as much regular communication from the school as was received in the past, but you can discuss this with your student’s teacher or teachers, and strive to find a good balance of transitioning them to greater independence.

Here are a few suggestions of things you might want to do before school starts.

  • Find out if the new school will operate on an A/B schedule or a traditional schedule, andif they use semesters or trimesters.
  • Locate the student handbook online or ask the school for a copy, so you can go over itwith your youth. Explore the school website with your youth, or suggest that they do theexploring independently.
  • Create a fact sheet with and about your youth. Keep it to one page and consider using bullet points. You can include positive information about your youth, disability information, areas of concern, tips for helping your youth, and maybe even a picture.
  • Discuss with the school how lunchtime works. Learn what the rules are and pre-teach them to your youth. Explore peer support possibilities. Many students worry that they may end up sitting alone in the cafeteria. Discuss these issues with your team and enlist neighborhood friends or classmates to help with this, if possible.
  • Practice walking the schedule. Do this before school begins when there aren’t a lot of others around. (Be sure to check in with the office beforehand to let them know your intentions.) If you find your youth can’t make it in time to the next class, check with the school counselor or special ed leader to see if there are any other options.
  • Schedule a brief face-to-face meeting with teachers, or send individual emails. This would also be the perfect time to include your youth’s information sheet if you choose to create one. Share any strategies that have a track record of working for your student. It is okay to point out accommodations as listed in the IEP. You may want to discuss with the teachers why these accommodations are listed and how your youth benefits from them.

In preparation for middle school/jr. high, teach your youth how to be a self-advocate, but be available if they run into roadblocks. Teach them how to ask clarifying questions and problem-solve ways to get help when they need it. Find out if the school has homework help times and encourage your student to make use of them. Determine who at the school your child can go to if they’re having problems. It may be a trusted teacher, school counselor, or psychologist. Talk to that person and have them meet your youth.

This is a time when personal hygiene and grooming are important. Work with your youth on this and explain why it is necessary. The minds of teenagers and pre-teens are far from being fully developed. They often make judgments based on how others look or act, but there are things you can do to help with the social adjustment of your child to middle school/jr. high. Also, teach your child about what is and is not appropriate language.

Resources

Talk about initiating and maintaining friendships with your youth. Help them realize that to have a friend, you need to be a friend. Work with your youth on conversational give and take skills. This is especially important if your youth is very interested in a particular topic and isn’t interested in talking about anything else. You may also need to work with your youth on not interrupting others.

If your youth would like to participate in clubs or school events, think about whether or not accommodations will be needed and discuss them with appropriate school personnel. Students who are on an IEP are entitled to participate in extra-curricular activities with any needed accommodations required to enable them to participate.

 

Change is difficult for everyone. By following the suggestions here and those in the resource documents, you can gather information and prepare for the change in schools, alleviate anxiety, and make it an exciting time for both you and your youth.

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“Kids can be mean, and kids who have been kind to your child might not think it's "cool" to be nice anymore. They'll wonder why they're left out more. Try to help them find a place in school where they can be successful. One good friend is enough if that friend is loyal.”

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“[Parents can expect] hygiene problems, social interaction difficulties, [and a] hard time finding friends. There may be some difficulties in dealing with changing classes, added homework, and bullies are an issue during this time. Will they be able to open their combination locker? Can they get one with a padlock?”

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“The socializing and friendship development you see with other kids in middle school will be different. Also, the chaos of middle school will be overwhelming. Socialize and include other children, and teach social cues. Socialize in smaller groups or one on one.”

Bullying and Cyberbullying

Bullying is a widespread issue that affects many adolescents; however, your pre-teen or teenage child with ASD may be even more vulnerable. According to the Autism Society, ASD youth are 63 percent more likely to be recipients of bullying behavior than their peers. Increased access to social media, cell phones, and email has altered the way youth interact and has added a new landscape for bullying known as cyberbullying. Unfortunately, your ASD youth may miss social cues and misread interactions, making it particularly difficult for them to recognize signs of bullying through online platforms.

Recognizing the Signs

There are many signs to be aware of that indicate some form of bullying is taking place, and it’s important to recognize them as soon as possible so that you can act to address the situation. These signs may present themselves as sudden physical, behavioral, or emotional changes such as:

  • Unexplained bruises, cuts, scratches, or other injuries
  • Missing or damaged clothing or personal belongings
  • Poor academic performance or declining desire to go to school
  • Being frightened by walking to school or catching the bus
  • Mood swings, frequent crying, or increased anger and aggression
  • Not wanting to talk
  • Anxiety
  • Feeling sick with symptoms such as a stomach ache, headache, or faking illness
  • Changes in eating patterns or coming home from school hungry
  • Sudden loss of friends
  • Difficulty sleeping or nightmares
  • Feelings of helplessness or decreased self-esteem
  • Self-destructive behaviors such as running away from home, self-harm, or talking about suicide
  • Beginning to bully others

Stopping Bullying

Recognizing and stopping bullying can be challenging. If your ASD youth has high support needs and struggles with communication, it can be even more challenging. The best preventative measure for bullying is helping your child comprehend what bullying is and how to identify it. It’s especially crucial to discuss cyberbullying with your ASD youth so that they can better understand the types of online interactions that are not acceptable and the seriousness of these situations. If bullying does occur, take immediate action with the school to help put a stop to it. You can also carefully monitor online media to make sure no cyberbullying is happening. Check out Screen Time and Online Safety to see how to keep your child safe online.

If your child is the bully, remember bullying is a behavior, not a characteristic. Bullies are sometimes suffering just as much as the victim and need to be dealt with using compassion and concern. Bullies need to be taught what they should do instead of bullying.

For more information and resources on bullying behavior and support visit the Utah Parent Center’s Bullying resource page.

Resources

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“[Be prepared for] more social difficulties, bullying, depression, anxiety, and more school advocacy. [Watch for] children and others being angry at them for misunderstandings. [Prepare for your] child being a victim of bullying by peers and/or adults.”

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“My son was bullied through middle school. Because the perpetrators were good at making my son look like the instigator, they were seen as the victim, and only my son was punished. After the diagnosis, a new administration began looking at what was happening before my son reacted and punished all involved. The bullying stopped.”

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Preparing for a Transition IEP

Parents may not think about what will happen after their autistic student finishes school. Even before entering high school, it is important to start to identify concerns and plan for a successful future when public school ends. For students receiving IEP services, a transition IEP does this by promoting movement from school to work, including goals for post-school activities, and maximizing self-sufficiency, employment, independent living, and positive community involvement.

In Utah, a transition IEP should be written during the student’s 14th year, or younger if determined appropriate by the IEP team. Transition planning before age 14 may be especially important for students who expect to graduate with peers of the same age or who are at risk of dropping out. We suggest that by age 12, parents start to have conversations with their youth about their plans for after high school or post-secondary school. This is also a good time to ask your youth about their interests, use extra-curricular activities to help them learn more about their interests, and find volunteer service opportunities to expand their experiences.

When writing the transition IEP, all of the IEP rules apply, plus the IEP Team must:

  • Actively involve the student in his or her IEP development.
  • Base the IEP on the student’s needs, preferences, and interests.
  • Define the student’s desired post-secondary goals.
  • Review the student’s transition services and adjust them as needed to achieve the student’s desired post-secondary goals.
  • Specify how different agencies will work together to provide needed services. The different public agencies can be invited to send a representative to the meeting.

The law also requires that the transition IEP must be reviewed annually to assure that the long-range goals are supported by specific objectives and activities which focus on strengths and abilities rather than just educational processes and to meet graduation requirements.

Additional information on transition IEPs can be found in the Resources.

If the behavior hurts or harms someone, either emotionally or physically, and if they have a hard time defending themselves, it’s bullying.

Assistive Technology (AT) and Communication

As you are considering the transition IEP, look at the full range of communication – reading, writing, expressive, receptive, and functional – and determine if and how Assistive Technology might benefit your student. As has been mentioned, middle school/jr. high is harder academically than elementary school. Refer to this Assistive Technology Consideration Support document for ideas and considerations. This might be a time for your youth to start using an electronic organizer, schedule, or planner to keep track of assignments and classes. Or to use a computer for note-taking rather than trying to write everything down. Or a “talking machine” to give voice to your student who struggles with spoken words. You and your student can discuss the options with your IEP and AT teams.

Resources:

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“Have your child be involved in the process of transitioning. It helps.”

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“Plan for post-high school. What do you want that to look like?”

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“[Think about the] transition to high school and [needed] life skills. [When planning for the
future, ask] what kind of school schedule would be a good fit?”

Home and Community

Adaptive Skills

Adaptive skills cover a broad range of adaptive behaviors including communication, social and relationship, and daily living skills. Sometimes as parents, we focus more on academic skills, thinking they will be the most critical for our youth’s success in adulthood. Studies have shown, however, that mastery of adaptive skills can be a better predictor of the ability to live independently than IQ or academic proficiency. Youth with low support needs may have as much trouble as those with high support needs in learning some adaptive skills so it is important to teach and practice these skills at home and in other settings.

Daily Living Skills

Daily living skills are those things that an individual needs to know how to do to navigate through their day. Think about the things your youth does each day. What level of support do they need to be able to do those things? For example, does your youth know how to set an alarm to get up in the morning? To get themselves ready for the day? To select an appropriate wardrobe based on current weather conditions or season? Does your youth independently schedule their time? Do their own laundry? Participate in household chores? Manage an allowance? Prepare a simple snack or meal? The answer to all of these questions may be “No, not yet”. You can work with your team to create a plan for incorporating these skills into your youth’s daily routine so they have lots of opportunities to practice.

A certified rehabilitation counselor, Zosia Zaks, suggests “living out loud” starting when your child is young. This means spelling out to your youth the thought and planning processes of the decisions that go into daily tasks by narrating them. For example, you would say to your youth, “I need new shoes. My shoes are worn out. Let’s look at my schedule. On Friday morning before work, I can go to the store to buy shoes. I will bring my wallet with me so I can pay for them with my debit card. Before I go, I will check my bank balance on my app to make sure I have enough money to spend on shoes.” This helps your youth understand the decision-making process as well as the steps to solve the problem.

Click here for ideas on how to teach daily living skills.

Resources:

Building Soft Skills at Home

Most of us are aware that we need certain skills to perform a certain job, such as word processing, driving a truck, nursing, or waiting tables. We make plans to get the training we will need for our desired job. These skills, known as hard skills, are essential for success on the job. There is another set of skills called “soft skills” that are just as essential. Many employers say that soft skills not only help someone get the job but more importantly, help them keep the job.

In fact, the lack of soft skills is often given as a reason why people with ASD are not successful in a job.

It is never too early to start practicing soft skills since they are the skills we use as we interact with others in school, in the community, or in employment. They include skills such as grooming and self-care, social skills, appropriate behavior, dependability, and so on. They are helpful no matter what your youth will do as an adult, and will help them with their present interactions.

Employers have identified ten soft skills that are important for getting and keeping a job for all individuals. These include:

  • A Strong Work Ethic
  • Dependability
  • A Positive Attitude
  • Self-Motivation
  • Being a Team Player
  • Being Organized
  • Working Under Pressure
  • Communication
  • Flexibility
  • Confidence

You may have already been working on some of these skills with your youth; however, planning, prioritizing, and setting goals for learning the needed soft skills will help prepare them to someday succeed on the job. Work on them at home. Give your youth chores and responsibilities so they can practice these skills and have success in a safe environment.

Model, discuss and teach soft skills, and allow your youth to experience doing a job well. Encourage the professionals who work with your youth to do the same. Teachers, aides, therapists, etc. can model, teach, support, and practice with your youth. Keep in mind, that those whose parents, and other trusted adults, have high expectations for them may have more educational opportunities as well as better-paying jobs that match their abilities and interests. See them as capable of great things because they are.

To learn more about how to teach soft skills to your youth, here are some great resources:

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“Promote independence but with good structure still, maybe independent type of sport or music to do.”

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“Plan to keep teaching and talking and explaining everything.”

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“Get help from the school. Make clear expectations and teach them to respect you. Focus
on things they need to learn and spend short amounts of time teaching many skills often.”

Social Skills

Many children and adults with autism need assistance learning how to act and engage in social situations. These challenges may become more evident as your ASD youth moves into their teen years and social interactions with their peers begin to change. During this time, awareness surrounding the idea of who “fits in”, who “stands out”, and who differs from the societal “norm” becomes more evident, particularly to those with low support needs. Additionally, relationships are suddenly full of unspoken social rules, which makes navigating social interactions and keeping friends more difficult.

There is also something referred to as the “Double Empathy Problem.” This theory is that empathy, or the ability to understand the thoughts and feelings of others, is a two-way process that depends on expectations learned from previous social encounters. The way of doing things and past experiences can be very different for autistic and non-autistic people and may lead to a breakdown in communication that can be frustrating for both parties. This can make it more difficult for your ASD child to connect, share experiences, and empathize with other people.

Studies have shown that teens with ASD can relate and be open with each other, just as those without ASD are open with others without autism. It is not a lack of social skills. They just don’t communicate the same way. Because most social interactions fit the non-autistic communication style, your autistic youth must learn to adapt and navigate that social environment by mastering some social skills.

Generally speaking, people naturally pick up the rules, customs, and abilities that guide interactions, but your ASD youth may need some practice. They may find it challenging to adjust to new social situations, or share interests with other youth; their interests might be very specific or related to things that appeal to younger children. The Age 6-11 page has additional information.

Strategies for Practice and Training

There are many strategies available to help your ASD child develop adaptive skills, in addition to different people who can provide support based on the setting and interaction. Occupational therapists, behavioral therapists, school psychologists, special education teachers, and general education teachers are just a few of the people who can create a safe space for your ASD youth
to learn these skills. Although no one approach works for everyone, some common strategies include:

  • Role-play
  • Watching TV programs
  • Video-modelling
  • Social Stories
  • Prompt cards or Social scripts
  • Self-management techniques
  • Social groups
  • Social media
  • Personalized Teaching Stories
  • Computers and other technology
  • Comic Strip Conversations

A detailed explanation of each strategy can be found here.

Acknowledging the challenges present for your ASD youth and utilizing these tools to build social skills can offer better support for navigating relationships with non-autistic peers, friends, and family.

Resources

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“[Watch for] continued social delays, difficulty having empathy for others, [and] distorted reality.”

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“[Be prepared for] social delays and a hard time fitting in or having friends.”

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“If you have been working with your child, you begin to see improvement in their ability to
cope in a neurotypical world.”

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“[You may experience] peer-related concerns and how well he is understanding his
schoolwork.”

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“My child [with low support needs] has difficulty making friends and understanding
non-verbal cues.”

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“It depends on the severity of [ASD], but [there can be] continued struggles with social
skills and increased anxiety.”

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“I noticed the older my kids got the more socially disconnected they became from their
peers. They are not as mature and are overwhelmed by the number and size of the schools.”

Screen Time and Online Safety

Computers, phones, and gaming consoles have become an integral part of our daily lives for both education and entertainment purposes. Youth with ASD may be more drawn to screens because of the visual engagement they provide and the type of social interactions they promote without needing direct interaction with another person. Although these devices can provide a lot of great support for youth with ASD, some safety concerns need to be addressed.

Digital Dangers

Media and technology offer easy access to inappropriate material that can expose your youth to violence, pornography, and other unsuitable content. This can be particularly challenging because there may be a struggle to shift from fantasy to reality and could potentially trigger ‘copy-cat’ behavior. Your youth could also be at greater risk for cyber threats, such as information theft or cyberbullying.

Here are some ways you can minimize those threats:

  • Limit electronic and internet use with the help of schedules and timers
  • Arrange for technology to be used in a visible location or the same room as an adult
  • Install monitoring, tracking, and safety software
  • Enable parental controls on all devices and safe searching settings on your browser
  • Create a checklist for internet safety do’s and don’ts
  • List acceptable websites and games to access
  • Have your youth use social skills training such as modeling, role play, social scripts, or social stories to practice safe and unsafe scenarios
  • Discuss content that can be considered illegal and the consequences of accessing inappropriate content
  • Communicate with your youth about cyberbullying and encourage them to come to an adult if they are worried
  • Use social media privacy settings to block people or content when needed
  • Monitor your youth’s social media sites
  • Teach your youth that online behaviors and interactions should be just as appropriate as those in public and private in-person settings
  • Monitor your debit/credit cards and bank accounts for unauthorized charges

It can be challenging for any pre-teen or teen to identify inappropriate interactions online and even more so for youth with ASD. Using the tips above, you can prepare your youth to avoid pitfalls and dangers.

Resources

Accessing a Faith Community and Faith Rituals

Opportunities to worship with a faith community are an important part of life for many people, including families in the autism community. Not only are faith communities sources of spiritual support, but they may also serve as a social center where families gather for entertainment, education, and other activities. Some families feel unable to participate in their religious community because they might feel excluded or self-conscious due to their youth’s behaviors or acting out during services. They may assume that they won’t be supported or accepted. As other pre-teens and teens are participating in religious rites of passage, it can be difficult to see your youth left behind. Sometimes the biggest barriers to participating in worship services are the attitudes of fellow congregants.

Parents can only do part of the work to create faith communities of belonging; the rest falls to the faith leader and fellow worshipers. There are several resources available to help religious leaders and congregations make changes that can improve the accessibility of their worship and other services. Some are included below. Four faith leaders participated in a panel discussion for the Family to Family Network on creating communities of belonging. They offered families some suggestions for ways to help faith leaders support their loved ones with autism.

  • Pray for opportunities to have conversations with your faith leader and congregation members. Pray that those conversations will go well and all will have open hearts.
  • Make an appointment to chat with your faith leader. Help them to understand how your youth can best learn, understand and participate in worship services and rites. Be honest with faith leaders about you and your youth’s needs, hopes, and expectations in a non-confrontational way. If it is important to you and/or your youth to be included in faith rituals or rites, let your faith leader know. Together, you may be able to find a solution that will allow your youth to participate.
  • Don’t be afraid to “bring the mess” to your faith leader and have a difficult conversation if necessary. You are your youth’s best advocate. Remember to use “I” language, as in “I feel uncomfortable bringing my daughter to services because she has a hard time being quiet,” instead of “You” language – “You always look sternly at my daughter during the worship service when she makes noise.”
  • Understand that unity does not mean uniformity. Encourage yourself and others to find beauty in the diversity of congregation members.
  • There may be others in your congregation who have similar needs as your youth and family. Gather together and discuss ways that the congregation can help your families meet those needs. Be willing to be part of the solution.
  • Understand that liability issues exist and are a concern for faith leaders and members. For example, taking on the responsibility of caring for someone that might elope may be a lot to expect of another.
  • Provide appropriate training to those who will be working directly with your youth so that they know how to best support them.
  • Realize that circumstances can change so be prepared to do things differently as needed.

Working together with faith leaders and congregation members, all families affected by autism can feel welcome and be active participants in their faith communities.

Puberty and Autism

Many of the parents interviewed for this website mentioned puberty as a time that triggered a lot of changes in their “tweens,” physically, emotionally, and in their moods. This can lead to increased negative behaviors and acting out. On average, puberty generally begins between ages 10-14 for girls and 12-16 for boys but can start earlier or later for your youth. It is best to prepare your youth and yourself for what is to come.

Otherwise, your youth may be confused or think something is wrong with them when they start noticing physical changes in themselves. And for Autistic youth who may be resistant to change, knowing what will come can help smooth the transition for everyone.

There are a variety of resources available to help you talk to your youth about puberty. You will find some at the end of this section and other parents may have additional ideas to share with you. You know your youth best and know what they will connect most with. Below are a few suggestions:

  • You can start the conversation by addressing the differences between a child’s and an adult’s body. You might look at pictures of them as a baby up to now to show how they’ve grown and changed and then discuss the ways their body will continue to change as they become an adult.
  • Use language that is specific and literal, such as “your voice will begin to deepen” instead of “your voice will break.” It might be helpful to use both the technical as well as typical slang terminology for body parts, such as “boob” for “breast,” so that your youth will understand what others mean when they use those terms.
  • Ensure your youth understands the concepts of “public” and “private,” and that some behaviors and conversations are to be saved for a private time. When your youth asks a question or makes a comment in public, acknowledge it and remind them that you will answer or discuss it at home, in private.
  • This is a good time to discuss with your youth your values towards sex and sexual behavior. There may be things that you and your family consider “right” or “wrong” and there are also things that are illegal or inappropriate. Be very clear about what those things are. If your youth engages in inappropriate behavior, try to remain calm as you discuss it with them. Sometimes the reaction is the reason for the behavior, so not reacting may lessen its occurrence.
  • More about Sexual and Relationship Education is discussed here with even more information provided in the Age 14-17 Home and Community page.
  • Include safety in your discussion about puberty. It might be helpful to review Defining Bullying Behavior especially the section on Sexual Bullying, to
    prevent your youth from being a victim or an unintended
    bully. The in the UK uses the acronym PANTS as an easy way to teach children and youth how to stay safe.

    • Privates are private – the parts of your body
      covered by underwear
    • Always remember your body belongs to you
    • No means no
    • Talk about secrets that upset you
    • Speak up, someone can help

References/Resources

It may be helpful to include healthcare professionals in your discussions on puberty. Some youth may prefer a clinical description of what is going on in their bodies. A mental health professional and/or behaviorist can also be helpful. The hormones that are released with puberty can affect behavior and any medication used to treat your youth. Be prepared before the onset of puberty to mitigate aggressive or challenging behavior.

  • Demonstrate and practice calming techniques
  • Learn what triggers the behaviors and avoid them if possible
  • Use positive reinforcement – this might be time to pull out the “big guns” with
    things that are highly reinforcing to your youth
  • Ensure you have a safety net of support for yourself and family members, both
    physically and emotionally.

With the changes happening in your youth’s body, hygiene will become even more important. Due to sensory issues, you may consult an occupational therapist to support your youth as they learn to take care of their increasing personal hygiene needs. As oil production in their skin increases, they will need to wash their face and hair regularly. Body hair and body odor also become issues that need to be addressed and frequent baths or showers are a must. Shaving is a personal preference and there are many products and options available for shaving beards, armpits, legs, etc. if desired. Deodorants and antiperspirants also come in a variety of forms. It might be helpful to try a few different brands or styles out to see which your youth will use consistently. Talk to other parents to see what tips and tricks they have for addressing personal hygiene for this age group.

For girls, wearing a bra can be tricky due to sensory issues and routines around getting dressed. Trying a few different types of bras and letting your daughter choose which she likes can help ease the transition. A visual schedule or reinforcements for putting it on every day can bridge the gap until it becomes a habit. Menstruation can be a shocking and scary experience at first so if possible, bring it up with your daughter before it happens. Usually, about a year or so after your daughter needs a bra is when menses, the first period, occurs.

There are a variety of products available from pads to tampons to cups so try a few to see what your daughter prefers and what will work best. It might be helpful to set up a schedule to remind her to change her pad or tampon. Discuss how to treat cramps and discomfort and find a method for her to communicate her pain level to you. It might be helpful to discuss with a healthcare professional options for controlling the number and flow of periods your daughter has.

This is a complicated time of life full of changes. You and your youth can glide more easily through the roller coaster called puberty by being prepared, seeking support from parents and professionals, and keeping communication lines open.

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Your child may want to interact with other children but won't know how to read or understand social cues. Puberty will affect them in different ways. More emotional without explanation. More aggression. A lot of meltdowns. Maturation goofs us all up!

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[There is] more awareness that they approach life differently than others, more sensory issues with more students around, and changes in the body that often creates more outbursts/sensory issues. [Prepare for] facilitating positive social interactions and having talks about development.

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Lots of changes at this stage. Plan for unexpected changes in likes and dislikes. Talk to your child about the changes they will experience with puberty and watch for them. Coping techniques will be needed heavily in this stage. Hormones and growth spurts make everything stop working. You have to start over again.

Sexual Education

Elementary schools in Utah have a “maturation program” that teaches students about their bodies and what to expect during puberty. It may also cover some basic sex education. Utah state law requires schools to teach sex ed but it isn’t usually addressed until high school and even then, it doesn’t cover some of the important topics that youth with ASD have indicated they want information on. Sex education in this group is also important from a safety point of view as individuals with disabilities are at greater risk of sexual assault and abuse. Sex education has been shown to help mitigate that risk.

According to Crehan, et al, the sexual education topics most requested by autistic youth include sexual orientation, gender identity, consent, and assertiveness (or advocacy). Since attraction begins around age 9 or 10 and gender identity is likely formed much sooner, parents may want to discuss these and other topics with their youth before high school. A resource to discuss sexual orientation and gender identity can be found here.

References/Resources

Consent is an important topic for everyone but more so for individuals whose autism impairs their ability to pick up on social cues or nonverbal communication. Consent means giving or getting permission to do something that affects or involves someone else. In a study by Crehan Labs at Tuft University, more than half of the autistic individuals questioned got information on consent from the Internet while approximately 26% got their information from friends. Less than 6% got their information from their parents. Consent is about so much more than physical touch or sexual acts. It’s about respecting boundaries in any relationship as you give or get permission to involve or affect someone else. It also includes the skills of assertiveness and advocacy.

In discussing consent, it is important to talk about when to ask for consent and what to do when the answer is no. Use examples that are age-appropriate so your youth has a clear understanding of when consent is necessary. Teaching and practicing assertiveness and advocacy can help explain to your youth how to give or refuse consent. Also, discuss what to do when the other party doesn’t respect the “no.” Social stories, television shows or movies, and/or role-playing may be very helpful in practicing these skills. You may also want to include others in teaching, practicing, and supporting these skills. See Strategies in Social Skills for more ideas on how to teach these very important skills. See Working with Professionals and Systems for more information on working with a team to teach sexual education topics.

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My boys barely pay attention to the changes their bodies are going through. We talked with my older boy about the "birds and bees" and puberty well before he reached that age and stage and told him to come to us with any questions or problems he may have. The only difficulty so far has been explaining to him that talking about these subjects is a private thing and should be kept at home with Mom and Dad. He isn't embarrassed in the same way as other kids his age and talks openly and clinically about such things without being discreet whether it pertains to girls or boys. My one comfort is that at least his future wife and daughters will have the love, support, and understanding they will need. His sisters, on the other hand, don't enjoy his easy engagement in such conversation.

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Hormones are a big problem. I would put girls on birth control and boys too if they have birth control.

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Keep trying every day. Porn will be a big problem.

Working with Professionals and Systems

A Team Approach to Person-Centered Planning

As has been mentioned in other ages and stages, it often takes a team of people to support you and your youth with autism. The team will consist of many different members who can help you address all of the areas of your youth’s life and can support you in making decisions about treatment, education, recreation, and health.

Your youth’s healthcare provider will assist you with medical needs and can also work with you both as you prepare for their transition to adult healthcare in a few years. Your team may also include a speech and/or occupational therapist, behaviorist, mental health professional(s), treatment specialist, education personnel, and more. Each team member can help you in supporting your youth in their particular area of expertise, but can also support your youth in achieving their hopes and dreams.

A Person-Centered Plan is a plan to help people live their best life. It allows the voice of the person about whom the plan is being written, in this case, your youth, to drive it. The plan can focus on one specific area of life, on one developmental stage, the entire lifespan, or just the next year. You may choose to do it at least once a year. The Utah Parent Center has many resources to help you create a person-centered plan. Using tools from Charting the LifeCourse Nexus, you can help your youth think about what they want for their future. Where do they want to live? Work? Play? Who do they want to associate with? There are six different life domains Charting the LifeCourse suggests considering:

  • Daily Life and Employment – school, employment, volunteering, communication, routines, life skills
  • Community Living – housing, living options, home adaptations and modifications, community access, transportation
  • Social and Spirituality – friends, relationships, personal networks, faith community
  • Healthy Living – medical, mental health, behavioral, nutrition, wellness, development
  • Safety and Security – emergencies, well-being, legal rights & issues, guardianship
    options & alternatives
  • Advocacy and Engagement – valued roles, making choices, setting goals, responsibility, driving one’s own life

You can fill out the tools for yourself from the parent’s perspective as well. What do you see for your youth’s future? What goals do you want them to work on? Your youth may need quite a bit of input from you and support from their team but as much as possible, let them be the driver of their Person-Centered Plan. This will help create inner motivation and general buy-in from your youth, as well as become an exercise in self-advocacy for them.

When you have a list of goals or steps needed to support your youth in reaching their hopes and dreams, you can enlist the help of the team to work on the goals. For example, if the goal is to have good relationships, especially preparing for romantic relationships, then you might ask your team for help with teaching maturation and sex ed in the following manner:

  • Parent: Consent, Hygiene, Family Values, Healthy Relationships, Self-Advocacy
  • School Personnel (as approved by school curriculum): Consent, Healthy
    Relationships, Maturation, Self-Advocacy, Social and Relationship Skills. These
    can be addressed through the student’s IEP if needed.
  • Healthcare Providers: Maturation, Menstruation, Healthy Relationships
  • Mental Health Providers: Self-Advocacy, Healthy Relationships, Consent,
    Social/Relationship Skills
  • Behaviorist/Other Therapists: Consent, Healthy Relationships, Self-Advocacy,
    Social/Relationship Skills, Address Problem Behavior
  • Speech/Occupational Therapist: Consent, Sensory Experiences, Self-Advocacy, Social/Relationship Skills
    • (adapted from Eileen Crehan, “Who’s Afraid of Sex Education?” webinar, Sparkforautism.org)
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Try to find your child's gifts and help develop them. And work on life skills.

“

Get help from teachers, scout leaders, [etc.]. [A team could include other] parents,
doctors, advocacy groups, peer supports, and a therapist for both child and parent.

“

A person-centered plan is a revelation as I heard the things my son wants for his future. I
am excited to support him in reaching his goals.

Youth Programming

Disability-Specific

Some organizations and agencies provide information, support, and training for individuals with disabilities, including Autism. These include the Centers for Independent Living located throughout the state and school-to-work transition services offered by the Utah State Office of Rehabilitation, also known as Voc Rehab. Many of the programs are for older youth, age 14 and above, but some apply to those ages 11-13.

Centers for Independent Living

The Utah Independent Living Centers (UILC) assist persons with disabilities to achieve greater independence. They do this by providing services and activities that enhance independent living skills and promote the public’s understanding, accommodation, and acceptance of their rights, needs, and abilities.

Each county in Utah is served by one of six Independent Living Centers. Each offers its own programs and services but all work to assist individuals to achieve greater independence. To find the ILC that serves your area, you can go to the Utah Statewide Independent Living Council website.

Pre-ETS Programs

Pre-Employment Transition Services, also called “Pre-ETS,” are offered to any student with a disability through Voc Rehab. These services aid students in exploring and planning for successful future employment through targeted training in:

  • Career exploration
  • Workplace readiness
  • Options for postsecondary education
  • Self-advocacy
  • Work-based learning

To be eligible for Pre-ETS, you must be aged 14-21, eligible for an IEP or section 504 services, and enrolled in a secondary or postsecondary educational program.

To learn more about Pre-ETS, click here.

Extra-Curricular Activities and Other Resources

Entering the Education System

Many communities throughout Utah have autism-specific programs available which offer a variety of services. Do your own research, and talk to other parents, educators, or healthcare staff for recommendations to find out if there’s a program to meet your youth’s needs. In addition to these, most communities in Utah offer a variety of programs for pre-teens and teens to help them develop their interests and skills. These can include city or county programs at the local recreation center, continuing education programs through the district, community groups, and private companies. Even though these programs may not be geared to youth with autism, it is possible for your youth to participate with the right supports in an activity of interest to them.

Some suggested activities include:

  • Recreational sports – this can be a team sport such as soccer, or individual sports such as fencing, swimming, or horseback riding. This can also include dance, martial arts, gymnastics, and much more. Special Olympics Utah may be of interest to your youth who enjoys participating in sporting events but may not feel comfortable with a community or school team.
  • Volunteering – volunteering is a great way to build job and social skills. If there is an organization or cause that your youth is particularly interested in, volunteering can be a great way to connect with a community of like-minded people.
  • Develop a hobby – if there is something your youth really enjoys or is interested in, find a class to develop the talent, in-person if possible to practice social skills as well. Playing a musical instrument, cooking, and art in various forms are all rewarding hobbies that can connect your youth with others, but the list of possible hobbies is endless. You can look through your community education classes specific to your area to spark some ideas.
  • Join a club or group – some schools have clubs or groups that meet as part of extracurricular programming that your student may be interested in joining. Remember that the IEP protections and accommodations include any extracurricular participation if your youth needs that support. Speak with your youth’s IEP team about the best way for them to be able to join a club or group.
  • Special interest groups – there may be groups that meet around a particular interest that are a good fit for your youth. Groups may meet in person or online. There are all kinds of groups, such as online gaming communities, Harry Potter groups, Dungeons & Dragons players, robotics or Lego-building groups, etc.

The Utah Parent Center publishes a Summer Resource List every year with summer programming offered throughout the state. They also have a Resource List for year-round programming. This can be a good starting point to find a program of interest in your area.

Resources 

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“[You should] get them into things that they are interested in. We found [a math] program during this age span, and it was wonderful for our son. Marching band has been a great activity, combining right/left marching with music. Plus all the amazing exercise! Our local swim team has an accommodated group.”

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“I had my son join the choir which was not a good choice. The choir had a special show that you could try out to do a solo that my son got picked for. At the performance, he sang, “Dust in the Wind,” and blew everyone away. Then the next term, he quit; he just wanted to prove to himself and [others] what he could do first. I was proud.”

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“My [low support needs] child loves music, math, and science. He learns and memorizes quickly. He strives for top marks in his classes and does not want to be late or miss a class. [We use these strengths to help in areas he isn’t as confident in.]”

Mental Health Professionals and Autism

Your autistic child has a higher risk for developing mental health conditions, such as Anxiety Disorders, Attention Deficit Hyperactivity Disorder (ADHD), or Depression. According to the American Psychological Association, 70 percent of ASD youth meet the criteria for at least one psychiatric disorder, and 40 percent for two or more. The use of medications, counseling, coping techniques, or behavior therapy can be beneficial for managing these co-occurring conditions and reducing symptoms that may threaten the overall health and wellbeing of your ASD child. Finding the right mental health professional can be challenging, especially for those with limited knowledge of the different types of treatment. Below are different types of professionals based on the service they provide in Utah. These services may vary by state.

Counseling

  • Psychologists
  • Counselors
  • Clinicians
  • Therapists
  • Clinical Social Workers

Prescribe And Monitor Medication

  • Psychiatrists
  • Psychiatric Or Mental Health Nurse Practitioners
  • Autistic and Unapologetic
  • Kidadl, the digital home of family edu-tainment
  • SPARK for Autism
  • Primary Care Physicians
  • Physician Assistants
  • Family Nurse Practitioners
  • Psychiatric Pharmacists

Certified Peer Specialists

  • Social Workers
  • Pastoral Counselors (faith-based)

For a more detailed description of the services provided by each professional and their education and licensing requirements, please click here.

Medications Used to Treat Mental Health Conditions Common in Autism

The following groupings of medications are often used to treat co-occurring mental health conditions in autistic individuals. For more information about each of these types of medication, click here.

  • Selective serotonin reuptake inhibitors (SSRIs)
  • Tricyclics
  • Psychoactive or antipsychotic medications
  • Stimulants
  • Anti-anxiety medications
  • Anticonvulsants

Healthcare providers and families should work together for the effective use of medication to manage some of the mental health symptoms of autism. It is common for families to try more than one medication before they find the right fit. Some medications have serious risks associated with them so be sure to ask questions and look for information to be educated about possible side effects so you can feel comfortable before use.

Health care transition preparation

What is Healthcare Transition?

As a parent to a pre-teen or teenager, you are likely taking care of the health information and appointments for your child right now. Once your child is an adult, they may need to be able to independently navigate the healthcare system and handle their own medical needs. At around the age of 12, you will want to start preparing them by shifting that responsibility to your ASD youth in small steps as is appropriate for their capabilities. This is known as Health Care Transition (HCT) and its objective is to get your child ready to take charge of their health care as an adult.

Preparing for HCT can seem like a daunting task for an autistic youth for a variety of reasons. Your youth is more likely to have co-occurring illnesses or mental health conditions that require additional services and more coordination between the different health care providers. Additionally, they often struggle with sudden changes, which might make the transition from pediatric care to adult care more challenging for them.

Counseling

  • Psychologists
  • Counselors
  • Clinicians
  • Therapists
  • Clinical Social Workers

Prescribe And Monitor Medication

  • Psychiatrists
  • Psychiatric Or Mental Health Nurse Practitioners
  • Autistic and Unapologetic
  • Kidadl, the digital home of family edu-tainment
  • SPARK for Autism
  • Primary Care Physicians
  • Physician Assistants
  • Family Nurse Practitioners
  • Psychiatric Pharmacists

Certified Peer Specialists

  • Social Workers
  • Pastoral Counselors (faith-based)

For a more detailed description of the services provided by each professional and their education and licensing requirements, please click here.

How to prepare

A recent study conducted by the CDC showed that ASD youth are less likely to get the recommended guidance and planning for HCT from their health care providers, with only 1 in 13 receiving information. With that in mind, it’s crucial to provide more access to education on steps available to transition youth from pediatric care to adult care. Some initial steps that you and your child can take between the ages of 12-14 include:

  • speaking with your family and current pediatrician about the next steps
  • developing a guide for transition and care
  • learning about your health condition, medications, and allergies
  • practicing independently asking your health care provider questions
  • finding out whether the health care provider also sees adults or at what age they no longer provide services for adolescents
  • staying organized with medical information, such as updating the health information on your smartphone for easy access
  • learning about transition resources important to you

These steps will help ensure that your ASD youth can successfully transition into adult care, however that might look. For some, this might be full independence, while for others it might be comfort and ease found in the transition to adult care due to proper preparation. Depending on the support level needed, you may need to take full responsibility for mapping out the best transition for your ASD youth, but don’t hesitate to ask for help from any providers as you tackle this together. More information on HCT for different age groups is available at Got Transition and health.utah.gov

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“We started young and we started at his "level" of understanding. We used social stories and simply made visuals (and reminders) hung up in the bathroom, etc., to help him to
know what the expectations were, and then we practiced a lot with him. Hanging up pictures of him DOING the healthcare (such as brushing teeth), etc., was important too. We learned to deal with things one at a time and not all at once. We chose the MOST concerning issue one at a time first and then when that was mastered to the point of what he could do, we moved to the next one.”

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“I like to think ahead at least 3 years when planning with my autistic son. I started talking with him about the importance of keeping his care team which includes his doctors, therapist, etc informed about his health along the way at 14. We have started practicing setting up appointments together and keeping all of his important paperwork regarding disability, diagnosis, and treatment together in a safe place.”

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“We started going over the online platform and discussed all of the data he now has access to (growth charts, vaccine history and due dates, appointment history/notes, etc) on his cell phone app. We also talk about the providers he sees and I will ask him about how he is feeling regarding the service received and the relationship. I have sat in on appointments with him while the provider takes the time to discuss what he or she will be doing during their time together, and I encourage him to ask questions if he has any (and he typically does) after any explanations have been offered.”