Ages (25-54)

Home and Community

Accessing your Community

Housing

Figuring out where to live as an adult can be challenging. Previous living arrangements may no longer be attaquent for your needs as you transition into a new phase of life. As an adult, you may be taking on more responsibility and have more independence, which can have an impact on the type of living arrangement you want. If you have an adult child with high support needs, they’re needs may have grown or they may no longer have access to the same support as they did at a younger age. Because of this, it’s important to look into housing options to see which is best for you or your adult child as they grow through adulthood. Some housing options available include:

  • Living Independently
  • Living with Family
  • Supported/Assisted living
  • Supervised Living Arrangements
  • Residential Care Facility
  • Family Life Home/Adult Foster Care
  • Intermediate Care Facility

Detailed information on each option is available here.

During this time, many adults wanting more independence or juggling responsibilities, such as raising children, may want to look into buying a house. The first thing that you’ll need to consider if you want to take this route is whether or not you can afford a mortgage. This will typically require getting a loan, so you’ll need steady income and a good credit score. If you need financial assistance, the U.S. Department of Housing and Urban Development offers

Homeownership Vouchers for individuals qualified for Section 8. You can contact your local Public Housing Agency (PHA) to find out if you qualify.

For more information on all financial assistance available to individuals needing housing, continue reading here.

Transportation

As an adult, it’s important to consider transportation and what options are best for your or your adult child. During your adult years there may be a lot of changes that occur at work, home, and within the family. This can include starting a job that isn’t located near public transportation or requires travel, no longer being able to rely on family members to drive, or starting a family. You may also be taking on more responsibilities during this time, such as going to doctor appointments or your own. These changes can start to highlight the question of “How will I or my adult child continue to navigate the community”.

Many individuals who are already driving will continue to do so as an adult. However, those who have the capabilities but haven’t taken on this responsibility yet may be influenced to do so to accommodate their changing lives. On the other hand, some adults with ASD will continue to choose not to drive or do not have the capability to do so. For these individuals it’s important to understand what options for public and private transportation are available within the community. Common services include:

  • Public Transportation
    • Bus Systems
    • Rail Systems
    • Paratransit Services
  • For Hire Services
    • Taxis
    • Ride-Share

When determining which of these options is best for you or your adult child, think about the level of independence, ability to navigate the community, tolerance of large crowds and loud noises, triggers, and communication ability. For adults with ASD who are now parents, you may also need to take into consideration your children and which option supports their needs. If you need more information on each option of transportation, you can continue to read here. 

Individuals in services with DSPD may receive transportation assistance to help with access to waiver and other community services, activities and resources. The type of transportation will vary but can include providing UTA passes or paratransit services.

Recreation

Resources for adults with ASD are often limited, so finding recreational activities or ways to engage with the community may feel challenging at times. As an adult, most individuals no longer have systems in place, such as school, that offer easy access to different activities or social groups. If you or your adult child needs some information on activities, the best option is to google what’s available within your community. To help, you can start by making a list of different interests and strengths. After you have this put together, you can begin searching for available options. If you find an activity for yourself or your adult child, you may also need to figure out whether there are supports available. Some individuals will need to find activities specifically targeted at individuals with ASD, intellectual disabilities, or other disabilities to provide proper accommodations. In this situation, it may become more challenging to find available options within your community. If you’re struggling to find options for yourself or your adult child, you can always contact your local disability resource center or independent living center.

During this time, you may also see your priorities and participation in social engagements begin to change. Many adults no longer have access to the older social groups they participated in at school, in clubs, or on teams. However, they may now have access to new social groups, such as parent communities. This can offer a great opportunity for further engagement with your community in a new capacity. You or your adult child may also be more involved with family as an adult, which can provide opportunities for participating in activities as a family.

Health and Safety in the Community

Understanding how to stay safe and healthy within the community is something that’s important for everyone as they reach adulthood. Individuals with ASD may need additional assistance recognizing, responding to, and preventing certain safety issues. Select areas that can be focused on as an adult include,

  • Safety navigating new communities
  • Financial safety
  • Sexual and relationship safety
  • Workplace safety

Many adults with ASD will be living more independently during this stage in their life. Part of the additional independence can include needing to navigate new communities. As a child or teenager you may have learned to navigate your own community, or relied on your parents when going into a new community. However, some individuals may no longer have family for support as an adult and the demands of life may require more travel outside of the local community. Some common reasons include travel for work or vacation. To help with this, you’ll want to research the location you’re going to before you leave. This can include researching transportation options, crime and safety, and having directions and addresses ready. Adults with high-support needs may benefit from additional support, such as friends or family members accompanying them when entering into a new community.

As an adult, you’ll also need to pay close attention to your finances and financial safety. With more independence comes more risk, so it’s important to recognize what information needs to be safeguarded. Information such as your Social Security number, credit or debit card number, and banking information should never be given out unless the request is made from a secure and trusted source. Scammers may try to contact you via phone or email and often impersonate professionals, banks, or government agencies. If you are contacted by phone or email it may be fraud, so you should always verify the source of your contact before releasing any information.  In situations that are scam, you can always make a report with the following:

  • FBI Internet Crime Complaint Center
  • Utah Department of Consumer Protection (Consumer Fraud): 801-530-6601
  • Utah Department of Securities (Investments): 801-530-6600
  • Utah Insurance Department (Insurance Fraud): 801-538-3800

Unfortunately, individuals with ASD are more susceptible to physical or sexual abuse even as adults. Understanding different types of relationships can help with recognizing inappropriate physical and sexual encounters and keep individuals safer. Adults needing more assistance understanding healthy relationships can use tools such as role play to help go over appropriate and inappropriate behaviors. Sex education is also critical in proving knowledge on abusive relationships or sexual encounter. This information can be reviewed for adults with higher-support needs or for those who may have received limited information as a teenager or young adult.

Safety in the workplace may be a new safety concern to take into consideration for many adults. Navigating the workplace environment and professional interactions can be harder for some individuals with ASD. When issues arise such as harassment, bullying, or isolation, some adults may struggle to recognize the unhealthy and inappropriate nature. It’s the employers job to ensure that there is a safe and welcoming environment for employees. If something happens that creates an unhealthy or unsafe workplace then immediate actions need to be taken. Each company will have different policies on how to handle workplace harassment or abuse, but a good place to start would be to talk with the Human Resource Department. To help prevent anything from happening, it’s important to be aware of your workplace policies and understand appropriate interactions.

Resources

Relationships and Child Rearing

Relationships can be difficult to navigate as an adult, regardless of having a disability. However, individuals with ASD may experience additional challenges that can make relationships harder to understand and maintain. Key aspects of a healthy relationship, such as communication and boundaries, can be difficult for individuals with ASD. Practicing communicating through role play and discussing boundaries is a great way to support an individual’s understanding of the relationship and what’s appropriate within it. This is true for all relationships, whether they are romantic, sexual, professional, or familial. Role play can be particularly beneficial for helping adults with high-support needs stay safe within different relationships.

By the time an individual is an adult, they may already have some experience with romantic relationships. Some adults may even be married with children or will be getting ready to start a family. The idea of raising children can be scary or even difficult to imagine; however, many adults with ASD have few limitations and are able to have a family like any other individual. Being aware of additional challenges associated with ASD that might arise while raising a child can prepare individuals and makes it easier to overcome obstacles. Some challenges can include:

  • Navigating different social environments as a parent
  • Advocating for your child
  • Sensory overload from smells, touch, and loud sounds associated with children
  • Changes in routine and a need for flexibility
  • Teaching social skills

While these aspects of parenthood can add additional stress to individuals with ASD, there are also ways in which ASD can help support adults while parenting, such as:

  • The ability to be highly observant and focused on minor details, which can help with recognizing potential problems
  • Providing stability though routine
  • Being able to understand and support a child with ASD

There are great resources available to assist adults who already have children or are wanting to start a family. First, you can find a group or network of parents who also have ASD to get information on parenting from their unique perspective. You can also attend general parenting classes to expand your knowledge on raising children. Finally, there are several blogs available online that talk about the experience of parents with ASD. Any of these options can offer a great opportunity to learn about and navigate through parenthood.

Resources

Self-Care

Many adults struggle with managing or finding time for self-care as they get older and take on more responsibility. Both physical and mental self-care are important to an individual’s overall well-being. However, some self-care habits can be difficult to follow, especially for adults with ASD. Basic habits such as regular hygiene, having a clean space, or eating a healthy diet can be challenging for individuals who struggle with sensory overstimulation from touch, smell, texture, etc. If self-care at the most basic level isn’t met, then it can be challenging to focus on self-care in other aspects of life. This is especially true for adults with high-support needs. In this case, a parent or caretaker may need to help the adult understand good personal hygiene and a healthy lifestyle so they can better care for themselves.

Some adults may need to find and implement additional self-care tasks into their routine to help take care of their physical well-being. This might mean finding time to do an activity that provides relaxation or enjoyment. As adults get busy with work, school, or their family, they may begin to lose time for themselves and stop doing things that make them happy. Setting aside a small amount of time for yourself can make a big difference in your overall physical well-being. If you want to help your adult child practice self-care, you can try to find activities they enjoy or find relaxing. Depending on the activity, it can promote both mental and physical well-being.

Co-occurring mental health diagnoses, such as anxiety or depression, are common for adults with ASD, which can make aspects of mental self-care more challenging. It’s important for individuals with mental health conditions to have a system in place to help manage symptoms of their diagnoses. This can include seeing a mental health specialist, taking prescribed medication, or following a self-made regimen that is physically or mentally stimulating. Having mental health diagnoses under control can improve an individual’s overall well-being and make mental self-care easier to practice and maintain.

For some adults, spirituality or faith may offer a great opportunity for self-care. Participating in religious practice or spirituality can support mental health and provide opportunities for social inclusion. Having a community that offers support is a great way to increase an individual’s well-being. Many religious institutions also offer opportunities to learn about and practice self-care. Adults that pursue a more personal form of spirituality may still find that their practices can better support their well-being. Even without a community, individual spirituality can offer guidance and an opportunity for self-care in a way that’s meaningful to the individual. For adults who aren’t currently involved in faith or spirituality practices but are interested, you can explore options within your community or look online to learn about different options.

Education and Employment

Employment Services and Supports

In the right workplace, an autistic adult can thrive. Individuals who have low support needs may not need help or support to find or keep a job. You or your adult child always have the option, however, to request reasonable accommodations in the workplace. Some workplaces can be uncomfortable because they are too noisy, too bright, or require a long commute. Employers can take steps to support diversity in the workplace, for example, making appropriate accommodations for autistic employees.

According to the Americans with Disabilities Act (ADA), “a reasonable accommodation is any change to the application or hiring process, to the job, to the way the job is done, or the work environment that allows a person with a disability who is qualified for the job to perform the essential functions of that job and enjoy equal employment opportunities. Accommodations are considered “reasonable” if they do not create an undue hardship or a direct threat.” As jobs and job roles change, keep accommodations in mind and ask for them when and if needed. Many resources are available, including from the Employer Assistance and Resource Network on Disability Inclusion and the Job Accommodation Network.

If you or your adult child is receiving support from the Division of Services for People with Disabilities (DSPD), that support is ongoing across the lifespan. This means having access to a support team that includes a support coordinator, and staff who can assist you or your adult child in living life as independently as desired. Needs, desires, and circumstances constantly change so this team can work together to ensure services and supports are adapted as needed.

Services can include job support and/or day program opportunities, among other things. At least yearly, those in DSPD services will meet with their team – support coordinator, family members, friends, service providers, etc. – to discuss what you or your adult child want to accomplish and set as goals. This meeting will discuss how time is spent each day, who will support what goals, and how to measure progress. You or your adult child have the option to choose to work at a preferred job and with job conditions and an environment that supports interests and needs. Or to choose a day program or other activities to fill the time, such as volunteering, or taking a community class. The team will discuss how to make these choices happen to the greatest extent possible. For more information, see Person-Centered Planning.

It is also important to remember that Vocational Rehabilitation (Voc Rehab or VR) services are always an option should you or your adult child express interest in getting a job, changing a job position, or changing careers. It allows people to explore the possibility of further education, volunteering, or career changes. VR services do not end just because they previously helped you or your adult child find a job. Depending on circumstances, they may be able to help with additional training or support you or your adult child in seeking additional or different employment. More about Voc Rehab can be found here.

Resources

Job changes and Professional Development

Between the ages of 26 and 54, it’s likely that an adult will go through job changes and professional development. This is a normal part of life and helps grow individuals within their job and personal lives. Sometimes these changes can be unexpected, which may be difficult for adults with ASD to adjust to. Career planning is a great tool to help prepare individuals and give them a good idea of what their goals, aspirations, and expectations are. This can look like a detailed list of responsibilities that you’re wanting to take on or goals you’re wanting to achieve. It can also look more broad and include ideas of where you see yourself in 1, 5, or even 10 years down the road.

Professional development looks different for each person. Some adults may find a job they love and work their way up within the company. This path offers plenty of opportunities to grow in each position while taking on new responsibilities. Other individuals may decide that a change in their career path is the best option. These adults will learn new skill sets that can provide professional development. Regardless of whether you’re changing positions or careers, the opportunities for growth are endless. If you are unsure of how to grow in your career, it’s a good idea to speak with your supervisor to understand and discuss your potential and expectations within the company.

Adults with high-support needs can also experience job changes and professional development. If your adult child has shown interest in working, you can help them try different jobs in fields or sectors that interest them. This gives them the opportunity to see what works best for them. It also allows them to pick up new skills in each position. If your adult child finds a job they love but doesn’t have the capability of moving up within a company, they can still be challenged by taking on new tasks and responsibilities. For many, this alone is rewarding and challenging enough to push them in their careers and keep them happy with the work they do.

For information on career exploration, supports, and accommodations, continue to read here. 

Resources

Working Benefits and Planning for Retirement

Many adults with ASD have the capability to work throughout adulthood. Individuals that choose to pursue work or a long term career may wonder what benefits they can receive and whether having a disability will affect this. Legally, employers cannot exclude individuals from benefits because of a disability. This ensures that adults with ASD have access to the same benefits as other employees within a company. However, the benefits offered can vary by job and position.

There are no federal or Utah state laws that require employers provide paid time off (PTO), regardless of whether it’s sick leave or vacation time. Companies are also not always required to provide health insurance to its employees. This will be determined by your working status, full-time or part-time, and the size or your company. To find out more about employment benefits and disabilities, read here. 

As your or your adult child gets older, you may want to start thinking about benefits related to retirement. To best prepare, it’s important to go over all options and set up a plan in place that can be reviewed when needed. There are three typical plans for retirement as listed below:

  • Individual Retirement Accounts (IRAs) – Retirement accounts owned by individuals with income they have earned through employment
  • 401 (k) Plans – Employer sponsored plans funded by an employee’s salary and sometimes an employer’s contribution.
  • 403 (b) Plans – Similar to 401 (k); however, this plan is administered to employers working at educational institutions, hospitals, and municipalities.

These programs can sometimes be treated as available assets or monthly income, which can reduce or disqualify an individual for government assistance including SSI (Supplemental Security Income), Medicaid, food stamps, etc. Many adults with ASD rely on this assistance, which can make creating a retirement plan more difficult. If you or your adult child is in this situation, you may be able to list another name as the direct beneficiary of the retirement plan so that government assistance isn’t affected. In this situation the named beneficiary on the account would be the special needs trust for yourself or your adult child.

For adults with high-support needs unable to work, the idea of retirement may be worrisome to think about for parents or caregivers. In this situation, adult children with a disability that predated their 22nd birthday are able to receive retirement benefits from their parents plans. They are also able to continue receiving government assistance, such as SSI and medicaid, as long as they meet the qualifications. More information in SSI and medicaid can be found here. 

Resources

Lifelong Learning

As an adult, there are endless opportunities for learning, regardless of an individual’s capabilities or disability. During this time, some individuals may choose to pursue a more formal education through learning institutions and certification programs. It’s not uncommon for adults with ASD to earn their Associates, Bachelors, Masters, PHD, or work certifications as an adult. For individuals who don’t have the capability to pursue this type of rigorous education but still want to learn, there are several programs available that can support adults with disabilities. For more information on types of educational institutions, read here. 

Some adults may not be interested in formal education; however, they may be drawn to educational opportunities through community engagement. Volunteering and participating in community activities is a great way to continue learning as an adult. These activities provide an opportunity for experiential learning, which can be great for adults with ASD, particularly those with higher-support needs. This type of learning may also be more accessible and affordable.

Finally, many adults will find that they have the ability to continue learning through their work. Just like receiving education from an institute or community engagement program, a job offers endless opportunities to grow and learn new skills. Many positions offer advancement opportunities that ensure an individual continues to master new responsibilities. If you don’t feel like this is the case for you, you always have the option of changing your career or job, which will open a path to an abundance of learning opportunities.

Working with Professionals and Systems

Adult Health Care and Insurance

Primary Care

By the time you are an adult, you should have already transitioned from pediatric to adult medical care. If for some reason you or your adult child still hasn’t started to see a primary care provider for adults, then you may need to start looking for one. To find a provider that meets your criteria, you can ask for a referral from your previous doctor’s office. You can also speak with your insurance. At 26, some adults may need to switch primary care providers as they transfer from their parents insurance to their own. In this situation, you should speak with your new insurance to see whether they also cover your current provider, and if not, which providers accept your new insurance. If a change does need to occur, this may be challenging for you or your adult child. Individuals with ASD can struggle with change, so finding a new provider can be difficult as they transition from pediatric to adult care or switch adult providers after getting different insurance. To help any transition that needs to occur for you or your adult child, you can look into providers that have experience working with individuals with ASD or other disabilities.

As an adult receiving health care, there are also different medical screenings that will start to pop up as you get older. Preparing yourself or your adult child for this can help ease the process of needing to undergo new exams and procedures. Between the ages of 26-54 years old, you want to do the following:

Everyone

  • Complete a cholesterol check in your twenties, and then every 4-6 years after depending on health and risk factors. This may need to occur annually if you have high risk factors.
  • Check your blood pressure annually or bi-annualy.
  • Have an annual full body skin examination to check for any suspicious moles or skin lesions. This can be done at a doctor’s office or by yourself at home.

Females

  • Examine your breasts for lumps. This can be done at home monthly. You can also get a clinical exam every few years.
  • Get a pelvic exam and pap smear. The first one should be done at 21 years old and every three years after.

Males

  • Do regular at-home testicular exams. This can be done monthly. You can get a clinical exam if any problems are suspected.

Once you reach your 40’s, you can expect to have additional medical screening. This includes the following:

Everyone

  • A colonoscopy should be completed at age 50. This should be done every 10 years unless there are risk factors that need to be taken into consideration.

Females

  • Have annual mammograms starting at 40. If breast cancer runs in the family or you have other risk factors, this may need to begin at an earlier age. At age 50 you may only need to get a mammogram once every 2 years.

Males

  • Have a prostate screening done at the age of 50. If you are high risk then this may need to start at 40. Depending on your results you may need to have screenings yearly or every other year.

This information was gathered from the CDC and National Library of Medicine. Recommendations may vary by doctor.

Insurance

Many individuals will need to think about getting their own health insurance or finding a new one at some point during their adult life. For most people, this will occur for the first time at 26, when insurance companies no longer allow children on their parents policy. There is an exception made for adults with a disability, such as ASD, to continue on their parents policy past 26. If you have an adult child with higher-support needs then you should look into the requirements and how to apply as soon as possible. Documentation will be required and depending on your adult child’s capabilities and disability, an insurance company may decide to extend the coverage for only a short time. You can talk with your insurance company to get more information on this process. For more specific information on how to find insurance, read here.

Resources

Navigating Mental Health as an Adult

For many adults, life can become more challenging with added stress from work, family, and more responsibilities within their personal lives. During this time, adults may also be struggling with untreated or undiagnosed mental health conditions. If this is the case for you or your adult child, it may be time to start looking into the mental health care system. Adults who already have experience working with professionals or seeking help as an adolescent or young adult may find it beneficial to look into what different options are available in this new stage of life.

If you or your adult child received services as a child, teenager, or young adult from a certified mental health care provider, you may need to look for a new provider as an adult. Some professionals who work with children will also see adults; however, many specialize in one or the other so it’s important to look into age requirements or restrictions. Additionally, adults graduating from a higher education institution no longer have access to mental health care services through the school, so these individuals will also need to find a provider that can work with them after graduation. Individuals who need to switch providers can talk with their current or previous provider to get recommendations or referrals. It may also be helpful to talk with the insurance company to see which professionals are covered.

Adults who haven’t previously received mental health care treatment from a certified professional can use some of the same tools when trying to find a professional, such as speaking with your insurance company. You can also use websites such as Psychology Today to find professionals that meet your criteria. More information on the different types of professionals is available here.

For adults with a partner and/or children, you may find that these relationships have a big impact on your overall mental health. Depending on the relationship, the impact can be positive or negative. For some individuals, their family offers support, guidance, and strength, which can be extremely beneficial to one’s overall mental health. Other individuals may be overwhelmed with the responsibilities of family life or raising a child and need additional support. In this situation, seeking out professional help may be beneficial. Some adults may find that family or couple therapy is a great option for this stage of their life. You can use the tools above to find a professional that specializes in this type of counseling.

For mental health support during an emergency situation, there are still many of the same crisis intervention programs available to young adults. Some individuals may have been introduced to programs such as Mobile Crisis Outreach Team (MCOT), and the National Suicide Prevention Line (800-273-8255) as a teenager or young adult. These programs offer great support options that continue to help with critical situations throughout adolescence and into adulthood.

Consider Employment

Most adults spend the majority of their adult life working at one or more jobs. This includes individuals with autism, many of whom are able to work without much extra support or major accommodations. Some, however, may have one or more barriers that make it hard to find or keep a job. They will need extra support from Vocational Rehabilitation, their own support network, co-workers, job accommodations, and may qualify for employment services from the Division of Services for People with Disabilities (DSPD). If you or your adult child are in DSPD services, the Division strongly encourages employment and assumes that everyone is employable.

You or your adult child may not want to work, or may not think that you have skills that are transferable to the workplace. There may be barriers that can make it difficult to think that employment is an option, such as challenging behaviors or limited communication skills. Those that may be least likely to be considered by systems and agencies as employable are those that most often need employment. Studies have shown that meaningful employment can actually be an intervention for individuals with challenging behaviors.

Employment is the preferred choice for individuals receiving DSPD services as Utah is an Employment First state, meaning that the state, and state agencies, place an emphasis on employment for everyone. DSPD expects and encourages community integrated employment in the workforce and envisions every person who receives services from DSPD will achieve their career goals and desires. At least yearly, individuals will meet with their team and have a chance to discuss their employment goals and desires using the Employment Pathway Tool.

The pathway tool asks users to consider four different employment pathways.

  • Pathway A – The person is unemployed and expresses interest in work
  • Pathway B – The person is unemployed and expresses that they are not interested in work right now
  • Pathway C – The person is working but desires a change
  • Pathway D – The person would like to maintain their employment and grow their career

Depending on the pathway chosen, there are different suggestions and next steps to consider. These include accessing agencies, such as Vocational Rehabilitation, and ideas for person-centered planning. The team can work together to support the individual in their desired employment goals.

Advocacy and Engagement

Many individuals will start to engage more with their community and the systems in place as an adult. This can look different for everyone. For some, they may choose to volunteer more with organizations, non profits, churches, schools, and other agencies. Other adults may focus more on engagement with governmental systems. Individuals with high-support needs may not have these same capabilities; however, they will still experience the impact of these systems on their lives. Because of this, it’s important to understand these systems and the growing opportunities to interact with them as adults.

If you or your adult child want to find opportunities for engagement and have the time to do so, volunteering can be a great option. This type of work allows you to make an impact within your community without needing too much time commitment. It may also be suitable for adults with higher-support needs. Some adults might choose to volunteer at shelters or churches to give back to community members. Other individuals may choose to volunteer for their child’s Parent Teacher Association (PTA) to help ensure that their children’s needs are being met. You can find an endless variety of volunteer opportunities that suit the interests and needs of you or your adult child.

Adults interested in engaging further with systems also have several options available. Individuals may choose to learn about how the government works, the direct impact different government programs have on their life, and how to participate in the processes of electing officials, lobbying, etc, so that their voices are heard. Getting started can be difficult for any adult; however, those with ASD may be met with additional challenges. This type of engagement can require a variety of skills, such as self advocacy and the capability to understand complex issues. For adults with high-support needs, this can be difficult. If you or your adult child are able to navigate these challenges and have the capability to understand and engage with government systems, then this type of civic engagement may be a great way to get involved in the community as an adult.

Information on rights and requirements for voting can be found here.