Education and Employment
Developing the Transition IEP
Ages (14-17)
If your teen is on an Individualized Education Program (IEP), they should have a Transition Plan as part of their IEP in place by their 14th year. This IEP differs from those written in previous years because the focus shifts to look at what the student plans to do AFTER their public school experience ends. By looking ahead, the IEP team determines what academic, employment and independent living skills should be put in place. The team can then monitor the student’s progress at least yearly to ensure that they will be ready to transition to the next stage of life when that time comes.
The purposes of the IEP meeting where the Transition Plan is discussed should be to:
- Determine the needs of the student.
- Target the services available to meet identified needs. Based on the student’s needs and goals, services might include academic instruction, community experiences, internships, volunteer work, work release, and adaptive skills training.
- Consider how communication supports will support the student, not only in high school but through post-high and beyond.
- Monitor the progress of the student towards their goals until they exit the public school.
- Provide information and training for parents about the transition process.
Students who participate in developing their IEPs and have input on the goals and services are more likely to want to work on them. They are also better able to advocate for themselves outside of school if they have opportunities to practice self-advocacy skills in their IEP meeting and at other meetings they might attend. Determine how much your teen would like to participate in their IEP meeting and then provide the support they need to do so. This may mean helping them prepare an agenda, supervising the creation of a PowerPoint presentation, discussing and asking questions about their future, including their goals, and/or practicing leading the meeting.
Transition to adulthood is an important time with a lot to consider. There are several resources to help you and your teen think about and plan for their future. One resource is the school counselor. Students with disabilities must have access to school counselors for planning and must be actively invited and included in school activities that address course planning, graduation, and post-secondary education and employment such as college week, scholarship opportunities, ACT, and concurrent enrollment. Some additional resources that may be helpful for you include:
- Charting the Life Course Focus On Transition to Adulthood Guidebook – A series of questions in several different life domains to prompt conversations about what your teen wants in their future life.
- Charting the LifeCourse Life Domain Vision Tool – This tool is to help individuals of all ages start to think about a more specific vision for life in the future and narrow down what life domain(s) to focus on at this point in time.
- Steps to Transition – A guide for things to consider when developing a transition IEP.
- Transition Elevated – This app is intended to serve as a guide to Utah students, family members, and educators during the transition planning process. It is based on the requirements of the Utah State Board of Education Special Education Rules (USBE Special Education Rules). This app can help prepare for the IEP meeting where transition planning will be discussed.
- “Transition from School to Adult Life – A Parent Resource Manual” – From the Utah Parent Center, this guidebook is designed to equip parents to be active participants in developing their student’s transition IEP. It provides information and resources that will become essential as your teen enters adulthood.
- Transition University – A project at the Utah Parent Center (UPC), in partnership with the Utah Developmental Disabilities Council (UDDC), that teaches a comprehensive curriculum about the transition to adulthood. This series of classes is open to transition-aged youth and their parents or caregivers. In these classes, participants are introduced to skills, services, and agencies that can help them as they prepare to age out of the school system and enter adult life.
- The assistive technology needs of a student need to be addressed in both school and other community and home settings and discuss a transition plan to keep access to those supports. If needed, school IEP teams can rely on Utah Assistive Technology Teams (UATT). UATT can assist students living with disabilities by introducing them to the many ways computer technology can enhance their jobs, careers, and education. Once a student leaves the public school system the Utah Center for Assistive Technology (UCAT) steps in. Effective transition planning will ensure there isn’t a lapse in AT supports.
- Transition University – A project at the Utah Parent Center (UPC), in partnership with the Utah Developmental Disabilities Council (UDDC), that teaches a comprehensive curriculum about the transition to adulthood. This series of classes is open to transition-aged youth and their parents or caregivers. In these classes, participants are introduced to skills, services, and agencies that can help them as they prepare to age out of the school system and enter adult life.
- The assistive technology needs of a student need to be addressed in both school and other community and home settings and discuss a transition plan to keep access to those supports. If needed, school IEP teams can rely on Utah Assistive Technology Teams (UATT). UATT can assist students living with disabilities by introducing them to the many ways computer technology can enhance their jobs, careers, and education. Once a student leaves the public school system the Utah Center for Assistive Technology (UCAT) steps in. Effective transition planning will ensure there isn’t a lapse in AT supports.
Sex Education in High School
When your teen enters high school they will have the opportunity to continue taking sex education classes. This material can be particularly beneficial for ASD teens because they are at greater risk for victimization, sexual assault, and abuse. They are also less likely to understand social expectations, possibly leading to inappropriate actions, and may make sexual encounters more challenging. If you and your teen believe that receiving sex education in school is the right choice, then you can opt into taking this class by giving written permission as the parent or legal guardian. Check with your school or school district for their policy on sex education and access to curriculum, if desired. You can find more information on the Opt-In Policy here.
Resources
Although receiving sex education in school can provide benefits, it’s important to know that the state of Utah has specific curriculum requirements that do not allow addressing issues beyond them. Additionally, each Local Education Authority (LEA), or school district/charter school, can establish its own content. State regulations do include some basic guidelines, such as:
- Each school must teach sex education
- All curricula must be medically accurate
- The prevention of communicable diseases needs to be addressed
- The material should stress abstinence but may include information about other contraceptive methods and devices
- Teachers must not advocate for or encourage the use of contraceptive methods and devices
- Content must include instruction on refusal skills
The state of Utah does not currently require that schools provide sex education on sexual orientation or gender identity. If you want more information on this topic to discuss with your teen you can read Discussing Sexuality and Sex Education.
Graduation Options for Students
There are a few different graduation options for students with disabilities in the State of Utah. As part of the Transition IEP team meeting, your student may choose a regular or another type of high school diploma. Many students with ASD do just fine academically, however, and are not on an IEP or Section 504 plan. Such students will then be expected to complete the requirements for a regular high school diploma to graduate. If your student is not on an IEP, we recommend you still meet with a team that includes your teen, school personnel, and others who know your teen well to discuss which pathway to graduation is best for your student and their vision of a good life.
The types of high school diplomas include:
- Regular High School Diploma
- Alternative High School Diploma
- Alternate High School Diploma
More about these options can be found here.
If your student is on an IEP and has not graduated with a Regular, or Alternative High School Diploma, they are still eligible for a Free, Appropriate Public Education (FAPE) and can continue in a post-high program. (An Alternate High School Diploma and Certificate of Completion do not end FAPE.) If your young adult has an IEP and turns 22 any time after July 1, the district must continue to provide FAPE until the end of that school year. Reaching the maximum age (age 22) automatically ends eligibility for FAPE.
Whenever your young adult exits the school system, the school should provide a Summary of Performance. This Summary should include recommendations on how to assist your young adult in meeting their postsecondary goals. It should contain key information about your student that can assist in understanding what accommodations can be helpful in a postsecondary setting. It can also provide useful information should your young adult choose to disclose their disability at some point.
Considering Employment
Exploration and Early Planning
Exploration
As your child reaches their teen years, work and employment may become a critical topic for discussion. Some teens may already show interest in getting their first job, while others may not have the desire to begin thinking about work. Regardless, it’s important to understand how to prepare your teen for employment and tailor that process to their capabilities.
As a parent, you play a major role in supporting your teen as they navigate their interests and aspirations. From a young age, teens can watch their parents pursue careers and other personal opportunities which can model professional skills and a positive attitude towards work. They are also likely to see more diverse career paths. This can push teens to expand their interests and prepare them to enter the workforce.
To best support your teen, you should begin exploring careers and planning for employment at a young age. This gives them plenty of time to develop and explore their specific interests. Like any child, your teen may be trying to test different career potentials and figure out where that path can lead them. You should pay close attention to your teen’s skills and interests to help guide them, and let them practice decision-making when considering their options. Additionally, encourage them to dream about and plan for opportunities so that they can be as involved as possible in the process.
Early Planning
Accessing outside resources is an important part of the process. There are Pre-Employment Transition Services (Pre-ETS) supported by Vocational Rehabilitation that are available for teens starting at 14 years old to help assist with the transition from school to work. These services provide job exploration, counseling, work-based learning experiences, workplace readiness training, and self-advocacy training. Vocational Rehabilitation will continue to be a great option to help your teen find competitive employment. You can also help connect your teen with peers, friends, professionals, teachers, or counselors within their community so that they can communicate about work, interests, and different experiences. As a parent, encourage them to ask questions such as:
- What job responsibilities do you have?
- What decisions did you make that led you to this career?
Providing examples of work experience and other career aspirations can help motivate your teen to explore potential work opportunities and set goals. Begin with making long-term goals that your teen wants to achieve. Next, break those goals into smaller steps that are manageable. This can include writing a resume, preparing for interviews, signing up for a disability employment service, going to university or getting vocational training, etc. Whatever short-term goals you and your teen set should be realistic for their capabilities and help them to reach their long-term goals.
To make the process easier for your teen, you can also use visual aids as a positive reminder of their goals. For example, hanging up a picture of your teen participating in a debate can help motivate them to reach their goal of becoming a lawyer. If you find yourself in a situation where your teen doesn’t quite know what goals to set or can’t find a career they are interested in, you can encourage them to do volunteer work or internships. This gives them first-hand experience to build working skills and lets them explore different opportunities.
Employment Supports
When your teen finds a job that interests them, there are many resources available to help them get hired for the position. You can use role-play to practice the interview process so that they are prepared for this social interaction. You can also utilize a job coach to help with the working skills and interpersonal skills needed in most professional environments.
Some teens may need additional support finding a suitable job and handling their job responsibilities. In this case, supported employment or customized employment are great options to help an individual with high-support needs work and thrive in a competitive working environment. Supported employment is placement in a competitive work environment with the necessary training and ongoing support to be successful.
Customized employment is also employment in a competitive working environment but in collaboration with the employer, a position is essentially created or customized to suit the skills and abilities of the employee to meet the needs of the employer. More information about these options can be found in the Resources.
Accommodations
The Americans with Disabilities Act (ADA) states that employers are required to provide reasonable accommodations for employees with disabilities. These accommodations provide necessary changes to the work environment or the way a task is done to best support an individual with disabilities in doing their job effectively. Employers can provide natural supports such as extra breaks, adjustment of supervisory methods, such as providing written instructions instead of just verbal ones, additional instruction or training, etc. They can also provide technological supports such as adjusted lighting, assistive keyboards, text readers, etc.
The following information can help when deciding whether or not to disclose a diagnosis to receive proper accommodations. An employee can request an accommodation at any time and your teen can expect a process that may require them to disclose any related diagnosis to help with a discussion about possible accommodations. For more information on accommodations and job options, you can explore the Job Accommodation Network (JAN).
Resources
- Autism.org – Workplace Accommodations
- Autism Speaks – Job Accommodation Toolkit
- Jobs.Utah.Gov – Vocational Rehabilitation
- Autism Speaks
- Cleveland Clinic Health – Preparing Teens for Work and College
- Idaho Division of Vocational Rehabilitation
- Utah Parent Center
- The Australian Parenting Website
- SPARK
- Wiz Case List – 25 Apps to Help Manage Routines and Tasks
To Disclose or Not to Disclose
For many teens on the spectrum, their autism may be an “invisible” disability to those who aren’t aware of their diagnosis. This can make the decision of whether or not to disclose an autism diagnosis complicated. When making a decision, pros and cons need to be weighed in each situation as the benefits and risks will change from one scenario to the next.
Sharing a diagnosis can offer the opportunity for additional support and understanding from family and friends, peers, teachers, and colleagues. However, it might also result in discrimination. If they choose not to disclose a diagnosis, a teen may be able to avoid prejudices but will also risk people responding negatively to their behaviors. They may also not receive the necessary accommodations.
Oftentimes choosing whether or not to share a diagnosis is not the only thing you need to consider. You may also need to think about when and how much to share. Although making these decisions can be hard, many people can provide helpful insight. Trusted family and friends, medical professionals, and mental health professionals are all great resources to turn to. By doing this, you and your teen can fully analyze the goal for each situation and all potential outcomes.
As a parent of a teen, you are probably used to making many decisions on behalf of your child from a young age as well as speaking for and about them to others, especially professionals. As your teen gets older and becomes more independent, however, the decision to disclose will typically be theirs to make. You should ask their permission before discussing their disability with others. Encourage them to speak up on their behalf if they can. Continue to provide support and guidance, but help your teen understand that they ultimately have the final say.
For more detailed information on disclosing an autism diagnosis in specific contexts click here.
Resource
Soft Skills for Job Success
Soft skills are adaptive skills that enable an individual to interact effectively with other people. They are skills that many people pick up on their own by interacting with those around them. Your teen, however, may have difficulty identifying and implementing these skills, which can create challenges when preparing to enter the workplace. To help your teen succeed, you may need to provide additional training and support so that they can develop soft skills effectively.
As a parent, you play a key role in helping your child learn expected behaviors, understand the unspoken rules of the workplace, and deal with conflicts. Many of the skills needed for this may not always be a focus for professionals at school, so it’s important to provide the opportunity for your teen to develop these skills at home. You can focus on aspects of communication, interpersonal skills, and lifelong learning skills to help them properly navigate through the workplace environment and professional relationships.
These skills can be further broken down to include:
- A Strong Work Ethic
- Dependability
- A Positive Attitude
- Self-Motivation
- Being a Team Player
- Being Organized
- Working Under Pressure
- Flexibility
- Confidence
- Being a problem solver
The younger your teen starts working on these skills, the more prepared they will be when they start their first job. In the workplace, relationship dynamics are often different than in school, so your teen will need to adjust to new social rules and expectations. This may feel overwhelming for some; however, there are a lot of great resources and strategies that you can utilize to support your teens’ learning. Role-play and social stories can provide a good opportunity for your teen to practice applying these skills to a professional environment. You might also consider putting the development of social skills into their Individualized Education Program (IEP) during the transition process of high school. By using these tools to improve soft skills, your teen can be more successful at finding and maintaining employment.
Resources
- Utah Parent Center – Developing Soft Skills
- Utah Parent Center – Building Soft Skills at Home
Home and Community
Learning Life Skills
Learning adaptive life skills is important to help prepare teenagers for independence. A study of adults with ASD found that those with better daily living skills were more independent in their jobs and educational activities. These skills include hygiene and self-care, cleaning, food preparation, time management, and getting around the community. Teens with ASD with both high and low support needs may find this type of independence challenging, so the life skills that need to be taught and the pace at which they are taught will vary greatly.
As your teen starts to learn these skills, they might have the opportunity to practice at home, at school, or within the community. To help your teen become more independent you’ll first want to know what their current capabilities are with each skill. Preparing a list of strengths and weaknesses can help you understand where your teen is in the process.
To set your teen up for success, you’ll want to understand how they learn best. Hands-on instruction, such as providing examples or practicing together, can be particularly beneficial for teens with ASD in building independence. Visual aids are also great supports when learning new skills. Regardless of the method you choose to use, make sure the learning is occurring where the activity would typically take place so that the transition to independence or adulthood happens more easily. For example, your teen can learn to use real money by going to the local store, doing their laundry each week, or practice navigating the local transportation system that they use every day.
There are also several steps you can take to help your teen pick up these new skills and stay on track, such as:
- Break tasks down into smaller steps
- Teach steps one at a time
- Use checklists or schedules (can use pictures)
- Have a goal
- Reward small successes
- Provide help when needed
Having the knowledge and tools to carry out these important life skills will offer the best opportunity for your teen to have more confidence in living independently. Depending on support needs and capabilities, this independence will look different for everyone. Some individuals may take longer to pick up these skills than others, nevertheless keep at it. It will pay off!
Resources
- Tips for Learning Life Skills
- Very Well Family – List of Teen-Approved Rewards
- Seek Freaks – Connecting Chores at Home with Facilitating Employment Opportunities
- Wiz Case List – 25 Apps to Help Manage Routines and Tasks
Navigating Life Post-High
Where to Go to School?
There are several educational options available after high school that you and your teen can consider. Some of these options include:
- Four-Year Universities
- Colleges
- Trade/Vocational Schools
- Online Schools
- Certificate Programs
- Disability Specific Educational Programs
- Community Education/Adult Programs
You can find more information on each educational option here.
If your teen wants to continue pursuing education, you can help them decide which route to take by discussing expectations, goals, financial costs and aid, location, program size, and available support. Understand that your teen’s current IEP or 504 in high school will not continue after their public education ends. You will need to spend time looking into accommodations available within each program and the process for requesting these accommodations. You may also want to look into application and testing requirements to see whether accommodations are available during this process. You can find more information on requesting accommodations on the SAT and ACT here.
Where to Work?
Navigating the workforce may be overwhelming for your teen. “Where do I start looking for a job? How do I find a job that can accommodate my needs? What do I want to do and what will I be good at?” These are all questions that your teen may ask themselves when thinking about entering the workforce. If your teen feels more comfortable working in an environment that can provide accommodations but doesn’t know where to look, they can begin by exploring websites, such as The Spectrum Careers.
This website allows you to explore job openings nationwide from employers who are recruiting qualified employees on the spectrum. If your teen needs more help finding job options or doesn’t know what accommodations they can request, you can also encourage them to explore other resources. For example, they can speak with a vocational rehabilitation counselor or visit the website Ask Jan. You can continue to read more in-depth employment information here.
Where to Live?
As the end of high school nears, you and your teen will need to start thinking about where they will live once they graduate and turn 18. Many teens want to gain independence during this time so the idea of leaving their parents’ home can seem exciting, but it also comes with its own set of questions and concerns based on their abilities and support needs. Some living options and programs to consider include:
- Living independently
- Living with family
- Supported/Assisted living
- Supervised living
- Intermediate Care Facility (ICF)
- Family life home/Adult foster care
- Residential Care Facilities
- Public housing
- Rental assistance or subsidized housing
- Section 8 housing
- Emergency housing
While talking with your teen about which option is best after high school, there are many factors that you should take into consideration. You may want to think about their medical needs, living skills, whether or not they drive or will need access to public transportation, if they will work or go to school, income or ability to pay for housing, funding sources that cover housing, such as the Division of Services for People with Disabilities (DSPD), etc. Answering these questions can help narrow down your options and ease the overall process. A great resource to help with finding housing nationwide is The Autism Housing Network. You may also wish to contact your local Independent Living Center to find support in your area. More detailed information on each housing option can be found here.
Supported Decision Making, Guardianship, and Alternatives
When your teen turns 18, Utah law recognizes them as legal adults, and as such, they have certain rights and responsibilities given to them. They will be the decision-makers in their own lives, and in education, they will have all of the rights that you as parents had on the IEP team. It is important to use these years in high school to prepare your teen for taking responsibility for their own life. This will look different for every teen, depending on their support needs. One tool to assist you in determining what decisions your teen can make on their own is the Tool for Exploring Decision-Making Supports from Charting the LifeCourse Nexus.
There are several options available to help you as parents provide the appropriate level of support while encouraging self-determination and self-advocacy in your teen.
- Supported Decision Making
- Guardianship
- Alternatives to Guardianship
- Strategies to Support Independence
- Resources
Supported Decision Making
Supported Decision Making is a way for teens to plan their lives and achieve their goals by working with various supports to make their own decisions about the future. By communicating with their friends, family members, and professionals, your teen will better understand the situations and choices they might face when making decisions. Supported Decision Making promotes your teen’s ability to be self-determined, control their own decisions, and empowers them to be more self-sufficient and independent. It also allows your teen to try (and possibly fail) at things which is how many of us learn valuable life lessons.
Supported Decision Making is not recognized by Utah law as a formal agreement for an individual with disabilities. For families seeking greater protection for their teens, some type of guardianship may be a better fit, but even in these instances, Supported Decision-Making can be used. More information about Supported Decision Making can be found here and here.
Guardianship
Guardianship is a legal process that allows someone, usually a family member, to ask the court to find that a person age 18 or older is unable to manage their affairs effectively because of a disability. A guardian is then appointed to make decisions in the individual’s best interest. The decision to petition for guardianship should not be taken lightly as by its very nature, guardianship is quite restrictive. On one hand, it puts protections in place so your young adult can live life more safely with someone else legally responsible for them; on the other hand, it limits their civil rights. They are usually stripped of the authority to make decisions that are granted to adults.
Guardianship can be full with all decision-making powers given to a guardian, or limited, with only certain areas of decision-making turned over. More information about guardianship can be found here. There is additional information in the 18-25 stage. It is best to start working on the requirements for the guardianship process two or three months before your teen’s 18th birthday. The actual court date cannot be set until they have turned 18 but planning ahead can allow for a smooth process.
Alternatives to Guardianship
Here are some alternatives to guardianship to consider while supporting your teen to live a self-determined life. More information about these options will be discussed in the Age 18-25 stage as many cannot be implemented until your teen is a legal adult.
- Power of Attorney – This is a legal document that is used to allow another person to act on behalf of someone else, including specialized decisions such as healthcare-related choices.
- Advance Health Care Directives – This gives another person the ability to make medical decisions for an individual if they cannot make them for themselves or communicate their decisions to others.
- Special Needs Trusts – Trusts are legal arrangements between an individual and another person (or institution) called a “trustee.” The trustee manages the adult’s assets which are placed in the trust, including their money and property.
- Representative Payee – This arrangement allows a third party to manage another person’s income. This is most often used for individuals receiving Supplemental Security Income (SSI).
Strategies to Support Independence
You can enlist these strategies now to help your teen learn financial skills with supports in place to keep them from making expensive mistakes.
- Joint Ownership/Joint Bank Account – Joint ownership can be used for property management, bank accounts, automobiles, stocks, bonds, or a home. Joint banking accounts put both the teen/young adult and another selected person on the same bank account. Both people have access to manage money, bills, and payments and see all account activities.
- Direct Deposits/Electronic Deposits/Electronic Bill Payments – Direct deposits, electronic payments, and/or billing can be set up through the individual’s bank. Direct deposits directly transfer the payment from the employer to the recipient. Electronic payments record the exchange of funds online which may make managing money easier. Electronic bill payment may also be easier for managing finances. Mobile banking apps have simplified the process of depositing money and paying bills.
- Limited amounts on credit cards or debit cards – Giving your teen a set amount of money on a credit or debit card to spend every week or month can give them practice in money management and paying for things they need or want. There are even apps that allow parents to “pay” their teens for doing chores, having good grades, or other parameters to earn spending money.
Resources
- National Center on Supported Decision Making
- Disability Law Center
- Utah Parent Center – Supported Decision-Making Guide
- Utah Parent Center – Guardianship
Person-Centered Planning for Future Success
Person-centered planning encourages freedom of choice by looking at your teen’s dreams and needs, planning for services and supports they may need, making things understandable for them, supporting self-advocacy, and helping them control their life. It is based on the philosophy that individuals are the experts in their own lives and should have the supports necessary to make their own choices and to have the freedom to live the lives they choose in their community.
Person-Centered Planning should help your teen to:
- Have control over the life they have chosen, or will choose, for themselves
- Be recognized and valued for their contributions (past, current, and potential) to their communities
- Live the life they want
Our state’s Developmental Disability Agency, the Division of Services for People with Disabilities (DSPD), encourages using some of the tools from the Charting the LifeCourse framework to aid in the person-centered planning process. The Charting the LifeCourse tools were created by families to help individuals and families develop a vision for a good life. Charting the LifeCourse tools help facilitate conversations, create strategies to overcome barriers, and help individuals work towards the lives they desire. The tools encourage advocacy, empowerment, inclusive communities, and self-determination. They can be found at https://www.lifecoursetools.com. More information and resources for Person-Centered Planning can be found on the Utah Parent Center website.
Safety Online, In the Community, and In Relationships
Online
Although the internet can provide many benefits to your teen, it may also expose them to inappropriate material and can lead to victimization or bullying. Unfortunately, teenagers are at a high risk of being targeted by an online predator, and individuals with ASD may be more vulnerable to compulsive internet use and its associated dangers.
To protect your teenager and help them understand internet safety, you should have open discussions about internet use and dangers, such as:
- Consequences (legal and non-legal) for accessing inappropriate websites
- Private information that shouldn’t be shared online
- Differences between facts and opinions online
- Cyberbullying
- Meeting people in person that they have only been in contact with online
Talking about these issues can help your teenager safely navigate the internet and media. More information on additional steps that can be taken to increase internet safety can be found in Home and Community 11-14 Screen Time and Online Safety.
In the Community
It’s not unusual for safety concerns to arise when your child becomes a teenager. Depending on capabilities, teens may begin gaining independence when navigating the community but can struggle to understand risks and concerns associated with life around them. When discussing safety with your teenager, you should talk about safety issues that can occur within the community. Areas of conversation can include safety at home, using transportation, handling money, navigating your neighborhood or community, and interacting with recognized community members or strangers.
You should also include self-advocacy, which is a crucial skill for your teenager to have. If your teen is ever out in the community and needs help, make sure they understand how to recognize a safe person and know the best way to ask for help.
This PDF on life skills provides more detailed information on safety and community navigation.
In a Relationship
Entering into a romantic relationship is uncharted territory and can be challenging for any teenager. However, those with ASD can sometimes struggle more than their peers because their social and mental maturity may not match their physical maturity. Your teenager may find it challenging to pick up the social cues and dating rules in a relationship, putting them at greater risk for physical, sexual, and emotional abuse. They are also more likely to behave inappropriately, so you should talk with them about safety within a relationship. These topics can include:
- How to recognize “red flags” or warning signs of an unhealthy relationship
- Understanding the concept of consent
- What qualifies as mental, physical, and sexual abuse
- Who to go to if they need to report abuse based on the severity
- Go to the police station or call 9-11
- Contact a domestic violence support organization
- Talk with your doctor
- Tell a trusted family member
For parents, it’s additionally important to be able to recognize signs of abuse, especially for those who have a non-verbal teenager. These signs can include
- Unexplained bruising
- Expressed pain
- Weight loss
- Behavior changes
- Social withdrawal
- Avoidance of people or places
- Outbursts
- Developmental regression
This information can also apply to other types of non-romantic relationships, such as relationships with family, work, and friends.
To Drive or Not to Drive
Driving is a rite of passage that many teenagers look forward to. As a parent, you are probably worried about the inherent danger of driving, especially when your teen has an ASD diagnosis. Although it might be hard to imagine your teenager behind the wheel, if they can focus, stay calm, and understand the rules of the road, then driving is a real possibility. The age at which it finally makes sense to teach your teen to drive will differ greatly, so it’s important to pay attention to whether your teen is ready to handle the required skills and take on the additional responsibility.
There are many factors and skills involved in driving, and understanding them can help with deciding whether or not your teen should learn. These include:
- Social judgment and perspective-taking
- Fine and gross motor coordination
- Physical coordination
- Pre-planning
- Flexibility to change
- Ability to focus, multi-task, and prioritize
- Impulse control and emotional regulation
When it comes to driving for the first time, teenagers with ASD face the same challenges as typically developing youth; however, their autism symptoms may interfere with their ability to safely carry out these listed skills. For example, your teen may struggle to understand the ‘body language’ of other drivers and may be unable to properly respond to any given situation. They may also have difficulty planning their actions in response to surrounding cars or their environment, and struggle to adjust quickly to changes. Additionally, teenagers with ASD may be over-stimulated by sensory information in their surroundings, which could make traffic, highway speeds, or road signs challenging. This has the potential to trigger anxiety or other emotional responses that are dangerous and difficult to control while driving.
The plan builds from a foundation of the family’s strengths and resources. The family should think about what they want the child to learn, what help or support they need, other areas the family needs support, and what resources the family has that can help them to reach desired outcomes. Outcomes should be identified before discussing services and supports. Outcomes can be for your child but can also be for your family. For example, you may want your child to be able to transition between activities without having a meltdown so that your family can enjoy time together doing a variety of activities.
Early Intervention services are to be provided in as natural a setting as possible and parents may be trained by the professionals to work on objectives at home to achieve the desired outcomes.
There are a variety of services available in Early Intervention programs. These may include but are not limited to:
Alternately, teenagers with autism might find that they excel at certain driving skills. Following rules and regulations, paying greater attention to details, and understanding vehicle mechanics are things that your teen may do exceptionally well, which can be a huge asset when learning to drive. With this in mind, it’s important to understand your teen’s strengths and weaknesses to have a better idea of what skills need additional practice and evaluation.
Deciding whether or not to allow your teen to start driving can be a difficult decision to make on your own, but it’s important to know that there are other supports in place that can help you. When you first start thinking about the possibility of your teenager beginning to drive, you can bring your concerns to the school. You can also connect with community organizations that focus on vocational rehabilitation services to help assess the possibility of your teen learning to drive safely. Driving schools may also provide great resources and support for understanding the reality of your teen’s driving abilities. Other considerations for teaching your teen to drive can be found here.
Throughout the process, there needs to be clear communication on both sides. Make sure your teen fully understands the responsibilities of driving and let them have some autonomy over the decision. If they feel ready but become overwhelmed once they begin to drive then you may need to reevaluate whether driving is suitable for your teen at this point in their life. The teen might choose not to drive if given the chance.
It’s also important to note that driving creates a greater possibility for police interaction, so you need to make sure your teen is prepared with information on how to interact with law enforcement as well. More information about these interactions can be found here.
Discussing Sexuality and Sex Education
Sex education is a topic many parents may be uncomfortable addressing with their teens. For those with autism, however, the information discussed in a school sex-ed class may not be sufficient to cover the topics they most need or want to hear about: sexual orientation, gender identity, consent, and assertiveness/advocacy. Parents may want to take an active role in discussing and teaching their teens about these important topics and can explain their values while doing so.
Studies vary widely on the percentage of people with autism who are gay, lesbian, or bisexual, but most of the data shows that these identities are found at a higher rate than in the neurotypical population. Public school sex education classes rarely discuss anything outside of heterosexual relationships. This is where parents can help their teens learn about their sexual identity and what romantic relationships look like. There are resources available to help get the conversation started, such as this list of resources about sexual identification and gender identity, online guides like this Self-Advocate’s Guide or Charting the Course toolkit, books like the ones listed in the resources, or television shows such as Atypical or Everything’s Gonna Be Okay. Talking about sexuality decreases the shame or discomfort teens may feel about it and may make it more likely they will speak up if they have a question or if someone or something is making them uncomfortable.
Appropriate boundaries can be a problem for everyone, not just those with autism, so it is a good place to start the conversation. How many times can you call someone without hearing back from them before you should stop? Who in their circle is it ok to discuss sex education questions with? What is the difference between a friend and a romantic partner? What age group is it ok to pursue a romantic relationship with? If you are romantically involved or sexual with someone, does that mean you love them? If you don’t want to be touched by anyone, what does that say about your sexual identity? These are just a few examples of questions your teen may have. Talk to them to determine what they want to know and provide answers in a clear, visual, and concrete way.
Your teen may not be ready to discuss any of this with you yet, and that’s ok. Teens develop socially on their own timeline and a teen with autism may be behind their peers in their social development. Watch for signs that your teen is showing interest in sexuality and/or relationships and be prepared to answer questions or start the conversation. There may be natural openers in your day-to-day interactions, such as a scene from a movie or something you both see in the community that can start a conversation.
Resources
- Organization for Autism Research – Sex Ed for Self Advocates
- Organization for Autism Research – Sex Ed Guide
- Discussing Sexual Orientation and Gender Identity [Link to Discussing Sexual Orientation and Gender Identity pdf]
- SPARK – Sex Education and Autism
- SPARK for Autism Webinar – Who’s Afraid of Sex Education, by Eileen Crehan
- Sex Education Resources
- SPARK – LGBTQ and Identity
- Autism Society – Sexual, Gender Identity, and Autism
- PA Autism – Sexual Orientation and Gender Identity
Books
- Intimate Relationships and Sexual Health: A Curriculum for Teaching Adolescents/Adults with High-Functioning Autism Spectrum Disorders and Other Social Challenges by Catherine Davies and Melissa Dubie
- Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders by Davida Hartman
Enjoying Friends and Faith Communities
According to scientific research, everyone has similar human needs, including social-cultural, and spiritual needs. Some may incorrectly assume, however, that an autistic individual does not have those same needs since they often struggle with social interactions or abstract thinking and concepts, which is what much of religion is. Spiritual and social interaction are indeed important to many ASD individuals, but they may need support to develop a social network and/or connect to their faith and faith community.
It may be helpful to create opportunities for social gatherings with other teens, in your home or elsewhere. Find areas of common interest between your teen and others he may know, and then encourage them to meet with others to talk about or enjoy those interests together. There may be clubs or extracurricular activities at school, or classes offered through community organizations or continuing education programs that may appeal to your teen. These are great opportunities to build interactions with similarly-minded teens. And if your teen needs additional support, there may be autism-specific social skills groups available locally (or virtually) that can provide training and practice in social interactions. Check with your local Independent Living Center or autism services provider. You can find additional ideas to “do it yourself” here.
Teens with autism should also have the support they need to fulfill their spiritual choices, whether that means participating in a religious practice or having opportunities to experience spirituality as they desire. Your teen may have opinions and ideas on how they would like to explore their spiritual side and/or faith community. Talk to them to determine how they would like to pursue their spiritual life. Then do what you can to support them in their pursuits. It may be a difficult conversation if they differ from you in their thoughts and feelings about your family’s religion or spiritual practices. This is a good time for them to practice self-advocacy and also understand others’ perspectives and what their family rules and values are when it comes to religious practices.
This may be a time, too, where your teen’s behaviors make it harder to feel accepted at church services and activities. There are tips on how to work with your faith leaders to create a more inclusive faith community in this panel discussion with various faith leaders. Some additional ideas can be found in 11-14 – Accessing a Faith Community and Faith Rituals.
Resources
- Autism Society – Faith and Community Resources
- American Association of Intellectual and Developmental Disabilities
- Spirituality and Health
- Flexible Mind Therapy – Resources for Spirituality and ASD
- Utah Parent Center – Disability and Faith
Working with Professionals and Systems
Get Ready for Adulthood and Adult Services
Special Education is an entitlement program that provides services to all qualified individuals. In this process, parents are the principal advocates, spokespersons, and decision-makers for their children until they turn 18 years old. Unlike entitlement programs, adult services are eligibility programs where a set of specific requirements determines whether your teen qualifies or not. The IEP does not follow them into adult services. More explanation about Entitlement vs. Eligibility can be found here.
In the Education/Employment section, we introduced you to post-high options such as employment, living arrangements, and higher education. There are also programs that your teen may qualify for as adults that parents may want to consider and help them prepare for. One of these is Supplemental Security Income or SSI. The Supplemental Security Income (SSI) program is a government program that pays benefits to adults and children with disabilities who have limited income and resources, and whose disability affects their ability to support themselves through work. Your family might not have qualified when your teen was younger, but once they turn 18, they are considered their own household and are more likely to meet the stringent asset and income requirements for the program.
The diagnosis of Autism alone is not enough to qualify as a disability. Your teen must meet certain requirements such as deficits in communication and social interaction along with repetitive behaviors AND extreme limitations in managing themselves. See the “Blue Book” for additional information on qualifying impairments. Once your teen has turned 18, you can begin the application process. (You can start the application before they turn 18 but cannot make an appointment for a determination interview until the month following their 18th birthday.)
The following resources can help you decide if your teen might be eligible and then help you prepare to apply for SSI:
- https://www.ssa.gov/disability/disability_starter_kits_adult_eng.htm
- https://www.ssa.gov/benefits/disability/
- http://www.disability-benefits-help.org/ssi/qualify-for-ssi
Another eligibility program worth looking into is the Division of Services for People with Disabilities (DSPD). DSPD provides a wide range of services intended to help people with disabilities participate more fully in their communities and lead self-determined lives. The type of services available depends on which waiver the person qualifies for. Services could include:
- Support Coordination
- Supported Employment
- Behavior Supports
- Day Programs focused on Employment Opportunities
- Person-Centered Planning
You may have looked into DSPD when your teen was young and filled out an application. If the application was denied or your teen has been on the waiting list for services, entering adulthood is a time to update their waitlist worker on the needs and supports. This can impact their status on the waiting list. If you have never applied before, this might be a good time to do it. Go to their website for more information and a link to the application.
Resources
- Utah Parent Center – Adult Services
- Benefits for People with Disabilities
- Research Autism – Guide for Transition to Adulthood
Healthcare Transition
Once your child reaches their teen years you’ll want to pay closer attention to the approaching transition from pediatric to adult healthcare. This transition will come with many changes, which may be challenging for your teen to navigate. Between the ages of 14-17, there are a few steps that you’ll want to take to best prepare your teen for their healthcare transition. Based on your teen’s capabilities these can include:
- carrying their own health insurance card and list of medications
- learning how to talk about and describe health conditions or concerns to a medical professional
- making their own doctor appointments
- ordering prescription refills by calling the doctor’s office or using any associated electronic platforms
- completing parts of the doctor’s visit without parent support to gain independence
- making a medical history summary
- navigating digital health records or electronic platforms
- Understanding the benefits of, and knowing how to, share their medical records with another adult
- learning about consent for treatment
- discussions and decisions about supported decision-making, including guardianship, power of attorney, etc.
- Using their smart device for keeping track of and updating medical information
Your teen’s current healthcare provider is a great resource for more information and can help support the process as well. They can inform you if and when your teen will need to transfer services and can offer referrals for adult primary care doctors. If you need additional assistance finding a new doctor for your teen you can also check with your insurance company to access a list of healthcare providers that are in-network.
From here you can research the different providers and see which one is the best fit for your teen’s needs. For those who have teens with more serious medical needs, you can also check with community disability organizations and support groups to see if they can provide any recommendations for doctors.
Once you find a doctor that you and your teen like make sure your or your teen reaches out to their office to ask some basic questions, such as:
- Do you accept my insurance?
- Is the doctor accepting new patients?
- How long is the wait for an appointment?
- Does the doctor have any affiliations with the nearby hospitals?
- Is there any paperwork that needs to be filled out before the first appointment?
- Should the pediatrician transfer over medical records or will the doctor request them?
- Are there any fees for missed appointments?
Making sure to ask these questions will prepare you and your teen for the transition between doctors.
Resources
- Nationwide Children’s Hospital
- Interactive Autism Network
- Health.Utah.Gov
- Got Transition
- Got Transition Healthcare Transition Video
- University of Montana – Skills and Strategies for Health Care Transition
- Provider Healthcare Transition Toolkit
Mental Health Services
Teens with autism have a higher risk of 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. Oftentimes, these mental health problems don’t become evident until your teen is between the ages of 14-18, so the onset of challenges can feel sudden and unexpected. This can make the process of finding the right help for your teen more difficult, especially in a crisis.
If you find yourself in a situation where your teen is needing mental health services and management, there are several options available, such as:
- Counseling
- Medication
- Support from mental health and crisis programs
To find out more information on types of counseling and prescribed medication, you can read 11-14 Mental Health Professionals and Autism.
You can support your teen by making sure they feel comfortable asking for help and understand the best way to do so. You should also find out who to contact if your teen has a mental health crisis and needs immediate help. There are several organizations and programs available that can intervene in a crisis situation, depending on your location in the state, such as The Trevor Project, Mobile Crisis Outreach Team (MCOT), the SafeUT app, and the National Suicide Prevention Line (800-273-8255). However, if the crisis is a medical emergency, immediately contact 911 or find the nearest hospital. You should make sure your teen and family are aware of these resources and have a way to easily access them if necessary.
Source: https://www.psychologytoday.com/us/conditions/autism-spectrum-disorder, Seattle Children’s Hospital Autism 101 series
Interactions with Law Enforcement
Having your teen interact with law enforcement can be a scary thought for parents. It’s hard to understand how your teen might react at the moment and how this might escalate the situation. Teens on the spectrum may get overwhelmed by a police presence, become fearful of the situation, inappropriately reach for police equipment out of curiosity, react in fight-or-flight mode, or not respond to commands. Unfortunately, there is often not enough training for officers or first responders on how to recognize, communicate, and respond well to individuals on the spectrum, which can lead to devastating outcomes. Because of this, your teen must have the tools and knowledge to better navigate this situation.
Depending on your teen’s capabilities, there are several different steps you can take to help them prepare for this scenario, whenever possible or appropriate
- Have your teen practice introducing themselves to law enforcement about their autism, symptoms, likes or dislikes, triggers
- Buy a medical alert bracelet for your teen to wear
- Prepare a handout card with information about your teen that they can carry on them
- Teach them how to properly reach for their handout card (Avoid sudden movements, obtain permission, or signal intentions)
- For more information on what to include in a handout card, here is a template you can use.
- Practice different scenarios with your teen through role play
- Help them understand why they shouldn’t attempt to flee
- Practice techniques on how to stay calm if overwhelmed
- Discuss the risks associated with law enforcement interactions
More tips for interacting with law enforcement can be found on Safety in the Home and Community.
For teens with low-support needs, the decision to disclose their autism diagnosis should be theirs to make. They might feel in certain situations that sharing their diagnosis can be helpful but in others not necessary. As the parent, you can help them understand which situations might benefit from this disclosure. More about self-disclosure can be found in the Education and Employment section.
If in a situation where you or your teen is calling 9-1-1 or a non-emergency line for assistance, giving details such as diagnosis, triggers, likes, and dislikes that can be dispatched out can help prepare officers for the interaction.
Finally, you can research local state and city law to better understand how your local law enforcement is prepared to interact with your autistic teen in different situations. Some counties or cities even have crisis intervention programs that may be better suited to help in an urgent, but non-emergency situation. Have this information known by the teen and readily available so that they know the best agency to contact if needed.
Other possible interactions with law enforcement may include situations where your teen is the victim or reporting a crime. Let them know that they should contact a family member, advocate, or friend to be present during the interview process.
Resources
- Asperger/Autism Network – Safety: Medical ID Bracelet and Wallet Cards
- Utah Parent Center – What to Expect When the Police are Called: Episode 2
- Utah Parent Center – Interactions with the Justice System