Transitioning to Adulthood: Creating Your Village
By Fakhri Shafai, PhD, M.Ed.
&
Christina Devlin, BA (Hons), RSSW, Autistic Self-Advocate
“Liling is a 17-year-old autistic person who is graduating from high school later this year. She is anxious about all her options in the future and doesn’t know where to start. When she thinks about having to be in charge of medical appointments, getting a job, or finding a place to live she gets overwhelmed. Liling needs help figuring out what she wants her life to look like and how to make it happen.”
Part I: Introduction
One of the most exciting and confusing times in many people’s lives is during the transition from being a teenager to being an adult. There are lots of changes after high school, and it can be hard to know what to expect or what to consider when making big decisions about your future. This toolkit was created to give you some practical guidance and suggested resources that can help you make decisions for living your best life. This toolkit can also be useful for your family members to read so they can support you as you plan for your future.
You may have heard the saying “it takes a village to raise a child”. People say this when they are talking about how there are many people in a child’s life as they grow up. For example, grandparents, aunts/uncles, teachers, neighbours, coaches, babysitters, doctors, therapists, and tutors may all help you learn new things or have new experiences during childhood.
People also say “it takes a village” to highlight that in society we are all connected to each other. For example, if it wasn’t for construction workers, we would have to build our houses ourselves. Or, if it wasn’t for farmers and grocery store employees, we would have to grow all our own food. The point is that we all benefit from being connected to other people. This idea that we are all connected to other people in our community is often referred to as interconnectedness.
“I grew up with the impression that adults were independent and perfect and didn’t need any help or have any weaknesses, which made me feel shame as an adult for not being unnaturally self-sufficient and not knowing how to do everything.” – Christina Devlin
Some people think that you no longer need others once you are an adult, but the truth is our need for a “village”, or connection with other people, continues throughout our lives. Both Autistic and non-Autistic people who are isolated from others are more likely to experience depression, anxiety, and loneliness1-3. People who are socially isolated are also more likely to have physical health challenges4-6.
“It is important to acknowledge that Autistic people and non-Autistic introverts tend to have very real needs for alone time, which can be just as critical for our mental health and shouldn’t be stigmatized.” – Christina Devlin
A person may feel lonely, but also still need alone time after being around people for an extended period of time. The trick is to find the right balance to meet your social needs and still allow you down-time to decompress after being social. Only you will be able to decide how much time you want to devote to being around others vs. having alone time.
Being part of a village isn’t just about what other people can do for you. It is also about how you can help other people. People who feel like they are making the world a better place are more likely to report being happy with their life7. People who have strong friendships or are close with their family are also more likely to say they are happy8. Feeling connected to other people comes from knowing that the people around you value their relationship with you, and you valuing your relationship with them9-11.
In the following section “Part II: What’s in a Village?”, we will talk about the important parts of a “village” for adults. In “Part III: How Do I Create My Own Village?”, we give you suggestions to help you create a village for yourself and provide links to useful resources that can help you as you transition to adulthood. These resources may help you figure out things like how to handle finding doctors that treat adults, accessing job supports, finding a place to live, navigating intimate relationships, and getting money for college/university.
Part II: What’s in a Village?
Villages are not just where we live or who lives around us. A village also includes how we fit in and interact with our larger community. Those who feel connected to others and supported by the people and services in their community are more likely to live happier lives4,9. Below, we have broken down what is important when creating your own village.
V stands for Vocation. When people hear the word “vocation”, they may think of different occupations, like being a teacher, grocery store worker, or nurse. A vocation can mean a person’s job, but it is usually said when a person is strongly drawn to and passionate about a particular career path. For some people, their vocation will require additional education. For others, learning and training will occur in the field. Vocation doesn’t just have to be about a job that interests and motivates you, though. A vocation can be a cause or activity you are committed to. For instance, a person may be passionate about politics or animals and spend their time outside of work doing volunteer activities to help those causes. For people on disability income support, vocation options may be impacted by income limits in each province. This doesn’t mean you can’t still find a vocation you are passionate about! It just means that how you approach your vocation may need to be adjusted so you do not lose your disability support income.
I stands for Interconnectedness. As mentioned in Part I, interconnection means being connected with one another and feeling like you belong. It is about the relationships you have with the people in your life and with your larger community. These can include romantic relationships, friendships, family relationships, and more general relationships like with your coworkers or people you interact with outside of work. Interconnection does not always come easily to people and maintaining relationships and friendships as an adult can be a challenge once people’s lives get busy with work, family, and hobbies as they get older. There are ways to improve your connections with others. You may find that you feel strong connections with your fellow Autistics12, so building relationships via local self-advocacy or support groups may be something you want to try.
L stands for Lifelong Health and Wellness. Your physical health will change as you age, but there are things you can do now that will help you stay healthy longer like exercising, eating nutritious food, and going to the doctor for regular checkups. Health and wellness also mean taking care of your mental health. Life is filled with good times and bad times, and sometimes the bad times can impact your mental health. You can do things to help your mental health as you age like having friends/family you can talk to and trust, practicing mindfulness or meditation to stay calm, and speaking with a therapist if you are having a hard time. The important thing to know about lifelong health and wellness is that it is not about being a certain weight or being able to run a certain distance. Lifelong health and wellness is more likely when you spend more of your life practicing healthy habits instead of unhealthy habits.
L also stands for Living Situation. Many young adults and/or their family members worry about where they are going to live when they get older. You may want to keep living with your family for a while, or you may be hoping to live with a romantic partner, friends, roommates or by yourself when you are older. Things like money, the town/city you are in, available supports, and access to services like transportation are all important to consider when weighing your options for where you want to live. It can be hard to know which option is best for you and you may have to try living in a few different places or with different people before you find a living situation that is right for you.
A stands for Advocating for Yourself and Autonomy. Self-advocacy is standing up for yourself by expressing your own views or interests. Nobody can read your mind, so throughout your life you will have to tell people if there is something you need support with, if someone is making you uncomfortable, if your rights are being violated, or if your needs are not being met. It is important to remember that advocating for yourself does not have to be done by yourself. You can ask someone or a group of people to help you advocate for yourself. For instance, you may want someone to come with you to a meeting with your doctor because you can get overwhelmed and may forget to bring up some of your health concerns.
Autonomy, or being able to make your own decisions based on your own values and interests, looks different for everyone. For instance, you could want to make your own decisions about where you live or how you spend your money, while someone else may want help with financial matters but does not want anyone to make medical decisions for them. The point is that autonomy allows you to decide what matters to you and if you want support from others in pursuing your own values and interests.
G stands for Goals for the Future. Having goals to work towards will keep you focused on accomplishing the things that are important to you. Everyone’s goals for the future are different and your goals can change over time. You may have goals for your education (like getting a master’s degree), future career (like becoming a car mechanic), hobbies (like replanting wetlands), or skills you would like to learn (like learning a new language). It is important to remember that it is okay to change your mind about your goals and make new ones instead. Part of being an adult is figuring out what you do and don’t like and adjusting as you learn more about your own wants and needs. Most people change jobs and careers multiple times in their lives. For instance, you may want to accomplish a certain goal like becoming a flight attendant, but once you try it out you may realize that you do not enjoy it or would like to try something new like working outdoors at a plant nursery.
E stands for Experiences. While many like routine, life can be boring if you do the same things every day. Having unique or fun experiences allows you to make memories and challenge yourself to grow in different ways. Many people make a ‘bucket list’, which is a list of things they want to accomplish or experience in their life. Some examples of common experiences you may want to have may include travelling to certain places, seeing certain concerts or theatre shows, learning new skills, or running a marathon. Just like goals for the future, it is okay if the things you want to experience change as you age.
Part III: How Do I Create My Own Village?
Creating your own village isn’t something that can be done overnight, and it also isn’t something that you do once and never think about it again. Creating our own village requires us to constantly make decisions and adjust our plans as we age. What matters to you when you are 20 years old may not matter as much when you are 60 years old. In this section, we highlight a few useful resources for each letter in your village. At the end of this toolkit, we list even more resources for you to explore.
Getting Started
The first resource that you may find useful can help you with making decisions for multiple parts of your village. The Launch into Life! course was developed by the Sinneave Foundation and will help you build a plan as you transition to adulthood. It has tools and resources to help you figure out things you want to work towards, like independent living skills, better finances, managing your own health, pursuing an education, and getting a job. We suggest starting with this resource and then deciding which of the resources below you want to look at next.
V is for Vocation. As mentioned earlier, vocation does not just mean your job. In fact, many people work jobs they are not excited about, but the job provides enough money and time that the person can focus on devoting themselves to a cause that matters to them. You may need to try different jobs before you find the right job for you. You may try spending time supporting different causes before you find the one that matters most to you. You may think you are interested in a certain vocation, but once you learn more about it, you may decide it is not the right fit for you. The average person in Canada will change jobs 12-15 times in their lifetime13, so don’t give up if your first choice doesn’t work out! Some resources are listed below that can help you with finding the best career for you.
If you choose a career path that will require additional schooling and/or if you want to pursue personal interests in school, the Post-Secondary Education Programs toolkit provides resources to help you select the best program for your needs and provides a list of support programs available in each province.
Ready, Willing, and Able is a national initiative that works with both employers and job seekers to build more inclusive workplaces and job opportunities.
EmploymentWorks is a national initiative that provides support in preparing for employment.
Suggested Webinar: AIDE Canada’s Employment and Vocation: Perspectives and Experiences Webinar has a panel of experts and people with lived experience share their perspectives on how to better support employment opportunities.
I is for Interconnection. It can be hard to make new friends as you get older or build your own support network with people in your community. Finding people who share your hobbies and interests can be a good way to start making connections. Dating can be awkward for everyone, especially when you aren’t sure what you are looking for or how to interact with people you are interested in.
“Figuring out who you’re attracted to, what kind of relationship you desire, if any, and what a safe relationship looks like is important. Learning about the red flags for abuse, family planning, whether you want kids and when, safer sex, boundaries, and consent can help you make more positive connections with others.” – Christina Devlin
Below are some resources to help you build the healthy relationships you want.
AIDE Canada’s Peer Advice Videos provide the perspectives of Autistic self-advocates on a number of questions around dating and connecting with family and friends.
The Developing Your Social Circle video essay was created by an autistic self-advocate who shares some of the ways he has developed his social circle.
AIDE Canada’s lending library has numerous books about dating and relationships you can borrow for free. The Autism Relationships Handbook by Autistic author Joe Biel is one of the most popular books on the topic available in our library.
Suggested Webinars: Healthy Relationships, Sexuality & Autism Part 1 and Part 2 discuss the concepts of sexuality and social skills through interactive, sex-positive, and inclusive sexuality education lessons.
L is for Lifelong Health and Wellness. Making your own decisions for your health and long-term physical and mental wellness isn’t always easy. You may not be able to see the same doctor who took care of you as a kid, and you likely will have to find a doctor that may not have much experience working with neurodivergent adults. You may sometimes have to decide between different options, like using certain medications, seeing a therapist, or having certain medical procedures.
“It’s critical to fact check what doctors say before making decisions about meds and procedures which could harm you and risk your life.” – Christina Devlin
Your health will change as you age, and you may need to see multiple health specialists throughout your life. Keeping physically active is important for our overall health, but there are lots of different types of physical activity. Some resources are listed below that can help you manage your own medical care and make decisions about your physical and mental health.
The MyTransition app is designed to prepare patients between the ages of 12 and 18 to begin taking charge of their health care as they approach adulthood.
The Pediatric Advance Care Planning (ACP) guide provides suggestions on important things to discuss with family and doctors when thinking and planning for the future.
The Toolkit for Understanding Approaches to Mental Health Care provides background on research-supported mental health treatments along with helpful summaries and reflection questions to help you decide which mental health approach(es) to pursue.
Suggested Webinar: The Mental Health and Planning for the Post-High School World webinar included perspectives from leaders in the field, including those with lived experience.
L is for Living Situation. There are different housing options and knowing which is best for you can be hard. Do you want to live alone, a romantic partner, your parents/other family members, with roommates, or be part of a larger home with supports? Do you want to live in a big city or is being out in the country better for you? What sort of access do you need to doctors, job support services, or public transportation? How important is it to you to live close to your family or in your hometown? How much money will you need to have your ideal living situation? Remember that you may have multiple living situations throughout your life and may try something, decide you are not ready, and then try it again in a few years. See the resources listed below to help you decide which housing options seem like they would be a good fit for you.
AIDE Canada’s Enjoying My Home toolkit provides an overview of the different housing approaches and suggestions on how to move forward once you decide on a housing option.
The Thinking About Moving Guide by The Sinneave Family Foundation offers resources to support the search for housing. Be sure to check out their additional resources as well.
The Alberta Housing Guide by Self-Advocate Christopher Whelan has lots of great advice and considerations for anyone looking to find housing opportunities, not just people in Alberta.
Suggested Webinar: The Autism and Affordable Housing: Promoting Action by Sharing Lessons Learned webinar by The Sinneave Foundation provides ideas on how to enhance housing opportunities.
A is for Advocating for Yourself and Autonomy. Self-determination, or deciding what matters for you and making your own decisions, is part of becoming an adult. Sometimes the people who have supported you growing up, like your family, may have a hard time remembering that you are an adult and that there are some decisions you want to make for yourself. Or maybe your family is supportive of your decisions, but medical professionals or bosses may ignore or downplay your concerns. You may want to have someone help you with some issues, like financial decisions, but want to make your own decisions for where you live. Some of the resources below can be helpful as you learn to communicate your needs and boundaries with others.
The Disability Rights Collection has toolkits, webinars, infographics, and online courses that can help you understand your rights around supported decision making, employment, voting, and privacy.
Planned Lifetime Advocacy Network supports planning for one’s future and provides guidance for the development of a Personal Support Network as you age.
The Transition to Adulthood Services: Continuing to Foster Self-Determination, Choices, and Self-Advocacy toolkit was developed to support self-determination during the many steps towards accessing adult services and supports.
Suggested Webinar: The Becoming a Self-Advocate webinar panel brings autistic self-advocates together to share their personal journeys and approaches to self-advocacy.
G is for Goals for the Future. Becoming an adult can feel overwhelming when you don’t know what you want to do. There are so many options of jobs, places to see, and hobbies to try. Do you want to return to school or take courses on a particular topic? Are there any volunteer opportunities you want to try? Do you want to learn how to skateboard or draw your own comic book? What goals do you have for the next few years and what goals do you have for when you are 50 years old? Below are some resources that can help you set your own goals.
The Autistic Advocacy organization has created the Planning Smarter with SMART Goals guide to help you set your own goals for the future
Building a Better Health Service offers a framework and guide to Person-Centred Planning
The Cooperative Research Centre for Living with Autism (Autism CRC) program out of Australia developed a useful resource called the Goal Setting Tool for Adolescents and Adults
Suggested Webinar: The Deciding on Support Needs for the Future webinar brought a panel of experts from British Columbia and Alberta to discuss practical concerns with planning for the future and deciding what sort of supports you may or may not want.
E is for Experiences. Just like with goals for the future, it isn’t always easy to know what you want to experience during your life. Forcing yourself out of your routine day-to-day life can be scary.
“Routine can also be a source of pleasure for Autistic people and of course maximize our ‘functioning’. However, I agree with the importance of making memories and challenging ourselves, but on our own terms.” – Christina Devlin
Sometimes an experience, like travelling to a new city or country, can cost money and you will need to save for it. You may want to experience what it is like to raise a family or climb a mountain. Do you want to experience going camping or to the movies with friends more regularly? Try to break down the things you want to experience into what you can do in the next few years vs. experiences that will take more time/money. Below are some resources to help you decide which experiences are important to you.
This article Holidays- A Guide for Autistic Adults, was written by Autistic speaker, trainer, and advocate David Crisp (aka. Wired4Autism- The Autistic Carer) and provides useful suggestions for planning a trip.
20 Ideal Hobbies, Activities, and Sports for People with Autism was written by James Ward-Sinclaire, the creator and founder of “Autistic & Unapologetic”.
Safety Skills for Asperger Women was written by self-advocate Liane Holliday Willey and provides guidance on how to remain safe in different situations, including when travelling or developing new skills. The tips included are useful for all, not just women.
Suggested Webinar: The Leisure Healthy Workshop webinar provides perspectives from different experts on the importance of recreation and leisure experiences and how to plan and find solutions to barriers you may come across.
Conclusion
Transitioning to being an adult is not easy for anyone. Going from having lots of support and guidance, to having less support can be scary. Fortunately, there are many organizations across Canada that have created resources to help you feel more confident as you begin this next stage of your life. Remember, you can always ask for help and then decide you don’t need that help in the future. Only you can know what it will take for you to live your best life possible!
Acknowledgement:
The inspiration for this toolkit came from Dr. P. Rosenbaum and Dr. J.W. Gorter’s published paper “F-Words in Childhood Disability: I swear this is how we should think!”. In this paper, the authors review evidence from CanChild research and discussions about the F-words that should be the focus in childhood disability: Functioning, Family, Fitness, Fun, Friends, and Future. CanChild has created the F-Words Knowledge Hub to provide research and guidance on how best to support children with disabilities in living their best lives. We adapted these F-words for the acronym “Village” in order to better highlight the specific needs of adults.
Additional Resources:
The Health Hub in Transition has resources that can help when transitioning to adult healthcare services.
The Canadian Mental Health Association (CMHA) is a nationwide organization that promotes mental health.
The Centre for Addiction and Mental Health (CAMH) is Canada’s largest mental health teaching hospital that conducts research studies and provides education and resources to individuals and medical professionals.
AUTGEMS collates valuable resources for female and gender-minority Autistics in the workplace so that you can make working work for you.
Reena is a non-profit that promotes dignity, individuality, independence, personal growth, and community inclusion for people with diverse abilities.
Surrey Place serves people of all ages with developmental disabilities and visual impairments in Ontario by providing integrated services and inclusive support for people to learn new skills, gain self-confidence, and reach their full potential.
The Developing Independent Living Skills for Adults with Developmental Disabilities Course provides videos and images with step-by-step instructions for completing important tasks on your own.
The Youth Kit by CanChild is a tool for teenagers and young adults to help give, get, and organize information so you can use information to be the best you can be!
The Transitioning out of the Family Home webinar provides perspectives and advice on how to plan for this change.
Job Coaching can help you learn new skills or support you as you start a new job.
References:
Ee, D., Hwang, Y. I., Reppermund, S., Srasuebkul, P., Trollor, J. N., Foley, K. R., & Arnold, S. R. (2019). Loneliness in adults on the autism spectrum. Autism in Adulthood, 1(3), 182-193.
Jones, S. C., Gordon, C. S., Akram, M., Murphy, N., & Sharkie, F. (2022). Inclusion, exclusion and isolation of autistic people: Community attitudes and autistic people’s experiences. Journal of Autism and Developmental Disorders, 52(3), 1131-1142.
Leigh-Hunt, N., Bagguley, D., Bash, K., Turner, V., Turnbull, S., Valtorta, N., & Caan, W. (2017). An overview of systematic reviews on the public health consequences of social isolation and loneliness. Public health, 152, 157-171.
Aoki, T., Yamamoto, Y., Ikenoue, T., Urushibara-Miyachi, Y., Kise, M., Fujinuma, Y., & Fukuhara, S. (2018). Social isolation and patient experience in older adults. The Annals of Family Medicine, 16(5), 393-398
Heffner, K. L., Waring, M. E., Roberts, M. B., Eaton, C. B., & Gramling, R. (2011). Social isolation, C-reactive protein, and coronary heart disease mortality among community-dwelling adults. Social science & medicine, 72(9), 1482-1488.
Barnes, T. L., MacLeod, S., Tkatch, R., Ahuja, M., Albright, L., Schaeffer, J. A., & Yeh, C. S. (2022). Cumulative effect of loneliness and social isolation on health outcomes among older adults. Aging & Mental Health, 26(7), 1327-1334.
Berg, J. M., Dutton, J. E., & Wrzesniewski, A. (2013). Job crafting and meaningful work. In B. J. Dik, Z. S. Byrne, & M. F. Steger (Eds.), Purpose and meaning in the workplace (pp. 81–104). American Psychological Association.
Delle Fave, A., Brdar, I., Wissing, M. P., Araujo, U., Castro Solano, A., Freire, T., ... & Soosai-Nathan, L. (2016). Lay definitions of happiness across nations: The primacy of inner harmony and relational connectedness. Frontiers in psychology, 7, 30.
Bailey, K. M., Frost, K. M., Casagrande, K., & Ingersoll, B. (2020). The relationship between social experience and subjective well-being in autistic college students: A mixed methods study. Autism, 24(5), 1081-1092
Satici, S. A., Uysal, R., & Deniz, M. E. (2016). Linking social connectedness to loneliness: The mediating role of subjective happiness. Personality and Individual Differences, 97, 306-310.
Saeri, A. K., Cruwys, T., Barlow, F. K., Stronge, S., & Sibley, C. G. (2018). Social connectedness improves public mental health: Investigating bidirectional relationships in the New Zealand attitudes and values survey. Australian & New Zealand Journal of Psychiatry, 52(4), 365-374.
Botha, M., Dibb, B., & Frost, D. (2022). “It’s being a part of a grand tradition, a grand counter-culture”: A qualitative investigation of autistic community connectedness. Autism: the international journal of research and practice.
Harris, Peter (2014). Thinkopolis IV: Time to Work [Report]. e-Learning Ontario & Workopolis.
Photo by Suhyeon Choi on Unsplash