E-Speaks eNewsletter
The transition from adolescence to adulthood is an exciting time, but for many, it can be overwhelming. Autism Speaks is committed to improving transition outcomes across the spectrum through partnerships, collaboration, information and resources. Below are just a few examples of tools that can help you along this journey.Design a personalized transition plan
Community-based Skills Assessment
Autism Speaks is excited to announce that the Community-based Skills Assessment (CSA), a tool to help you develop a personalized transition plan, is now an app, powered by Identifor.
The challenges associated with the transition from school services to adulthood for individuals with autism are well documented. Every individual with autism is different and as a result, there is no "one size fits all" plan for the path to adulthood.
The most important factor in creating a plan is to focus on the individual. His or her strengths, needs, challenges and preferences will play a critical role in ensuring a successful transition process. The CSA, developed through a contract with Virginia Commonwealth University's Rehabilitation Research and Training Center, was designed to help parents and professionals assess the current skill levels and abilities of individuals with autism beginning at age 12 and continuing into adulthood in order to develop a comprehensive plan.
The CSA is the first tool to assess needs in the area of community-based living, from transportation to financial management to peer relationships and more. The tool is divided into three levels based upon the age of the individual being assessed. Eight critical areas of functional life skills will be assessed:
- Career path and employment
- Self-determination/advocacy
- Health and safety
- Peer relationships, socialization and social communication
- Community participation and personal finance
- Transportation
- Leisure/recreation
- Home living skills
Click here to read the introduction and learn more about the CSA. You can also read all about how it works here!
Download the Community-based Skills Assessment here!
This assessment was developed for Autism Speaks through a contract with Virginia Commonwealth University's Rehabilitation Research and Training Center. It was designed to assess an individual's knowledge, skill and social communication abilities.
Our Transition Tool Kit helps you plan for adulthood
This popular resource provides options to consider as you map out your child's unique path to adulthood. Hard copies are available free of charge.
Transition Tool Kit
New! Autism Speaks is excited to announce the launch of Version 2.0 of the popular Transition Tool Kit. The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.The guiding principle that we used in developing this kit is that all individuals with autism, regardless of the level of support needed, should be able to live a life filled with purpose, dignity, choices and happiness. This kit will provide you with suggestions and options for you to consider as you set out on this journey toward finding your child's own unique path to adulthood.
Transition Tool Kit Sections:
Anyone can download the Transition Tool Kit for free! You can also view a PDF of each section by clicking on the links above.
Click here to download the entire kit!
Order the Transition Tool Kit
Family members of adolescents and young adults with autism between the ages of 13 and 22 in the United Statesmay request a complimentary hard copy of the Transition Tool Kit by filling out the Transition Tool Kit order form. For professionals, service providers, and family members of individuals with autism outside the U.S. and those who do not fall in the age range, we encourage you to download the kit free of charge.
State Timelines
Since the transition process is different in each state, we have also developed timelines for each state, with additional information, as well as state agency information that may be helpful to you throughout this process.
If you would like to purchase a copy of the Transition Tool Kit, you can order it online at the Autism Speaks Store.
Susan Logan Evensen and Peter Evensen
Jenny and Joe Zarrilli
Have questions? Email the Autism Response Team for information and resources in your local area.
We would love to hear from you! Please e-mail us with feedback and suggestions for improvement at transitiontoolkit@autismspeaks.org.
* Learn more about the Autism Speaks Autism Treatment Network here.
* Find the ATN center nearest you here.
* Explore our archive of ATN expert-advice blogs and news stories here.
Got more questions? Send them to GotQuestions@autismspeaks.org.
- Introduction
- Self-Advocacy
- Developing Independent Living Skills
- Planning for Transition
- Legal Matters to Consider
- Community Living
- Employment and Other Options
- Postsecondary Educational Opportunities
- Housing and Residential Supports
- Health
- Technology
- Conclusion
- Resources
Anyone can download the Transition Tool Kit for free! You can also view a PDF of each section by clicking on the links above.
Click here to download the entire kit!
Order the Transition Tool Kit
Family members of adolescents and young adults with autism between the ages of 13 and 22 in the United Statesmay request a complimentary hard copy of the Transition Tool Kit by filling out the Transition Tool Kit order form. For professionals, service providers, and family members of individuals with autism outside the U.S. and those who do not fall in the age range, we encourage you to download the kit free of charge.
State Timelines
Since the transition process is different in each state, we have also developed timelines for each state, with additional information, as well as state agency information that may be helpful to you throughout this process.
Click your state below to view the Autism Speaks Transition Tool Kit timeline specific to you and your family:
Alabama - Alaska - Arizona - Arkansas - California - Colorado - Connecticut - DC - Delaware - Florida - Georgia - Hawaii - Idaho - Illinois - Indiana - Iowa - Kansas - Kentucky- Louisiana - Maine - Maryland - Massachusetts - Michigan - Minnesota - Mississippi - Missouri - Montana - Nebraska - Nevada - New Hampshire - New Jersey - New Mexico - New York - North Carolina - North Dakota - Ohio - Oklahoma - Oregon - Pennsylvania - Rhode Island - South Carolina - South Dakota - Tennessee - Texas - Utah - Vermont - Virginia - Washington - West Virginia - Wisconsin - Wyoming
Purchase the Transition Tool KitIf you would like to purchase a copy of the Transition Tool Kit, you can order it online at the Autism Speaks Store.
Autism Speaks thanks the following supporters whose generous contributions have helped to fund the Transition Tool Kit.
Jenny and Joe Zarrilli
Have questions? Email the Autism Response Team for information and resources in your local area.
We would love to hear from you! Please e-mail us with feedback and suggestions for improvement at transitiontoolkit@autismspeaks.org.
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Autism and the transition to adult healthcare: Guidelines for lifelong care
Our teenage son, who has autism, will soon be aging out of the pediatric practice where he has a medical team coordinating care for a number of medical issues. As we start planning his transition to adulthood, we’re wondering whether there are medical guidelines for the lifelong care of individuals with autism.
Today’s “Got Questions?” response is from developmental pediatrician Daniel Coury, medical director of Autism Speaks Autism Treatment Network (ATN). Dr. Coury is also the chief of developmental-behavioral pediatrics at Nationwide Children’s Hospital, in Columbus, Ohio.
Thank you for your very important question. Too many young adults with autism fall off the map, so to speak, in the transition from pediatric to adult healthcare. Within the Autism Speaks Autism Treatment Network (ATN), we’re working hard to help families prepare for this transition, beginning in adolescence.
I’m happy to report that one of our centers – the Vanderbilt Kennedy Center, in Nashville – has taken the lead in developing the kind of guidelines you seek.
Vanderbilt's online guidelines for healthcare providers
Health Care for Adults with Developmental Disabilities is an online tool kit for primary-care physicians. Importantly, it contains a healthcare “Checklist for Autism.” This checklist guides the physician through autism-specific considerations and recommendations for medical issues including sleep, dental health; gastrointestinal health, sexuality, mental health and much more.
The “considerations” section of the checklist highlights physical and mental health conditions that frequently co-occur with autism. The “recommendations” section lists useful exams and tests with their suggested frequency.
When it’s time for your son to transition out of pediatric care, we suggest that you bring this checklist to his new primary care doctor. What’s more, the recommendations aren’t limited to adults. They likewise include guidance on pediatric healthcare. So you may want to share it with your son’s current medical team as well.
If your son’s new doctors have little experience with autism, you might likewise share the Vanderbilt tool kit’s section on “Communicating Effectively” with patients who have developmental disabilities.
ATN/AIR-P treatment guidelines
Not coincidentally, many of the guidelines in the Vanderbilt tool kit’s “Autism Checklist” are based on best-practices developed by clinicians in the ATN. This work has been made possible by the ATN’s role as the federally funded Autism Intervention Research Network on Physical Health(AIR-P).
Last year, the journal Pediatrics published a number of our best-practices research reports in a special supplement. You can access the entire supplement – or direct your son’s physicians to it – here.
We look forward to the day when we have Autism Centers of Excellence for adult healthcare modeled after the ATN’s pediatric care centers. Until then, our clinicians continue to educate community physicians on the special healthcare and communication needs of individuals with autism throughout their lifespan.
We wish you and your family the best. Please contact us again to tell us how your son is doing.
Autism and the transition to adult healthcare: Guidelines for lifelong care
Photo credit: Ohio State Wexner Medical Center
Health Care for Adults with Developmental Disabilities is an online tool kit for primary care physicians. It contains a useful healthcare Checklist for Autism, which guides the physician through autism-specific considerations and recommendations for medical issues including sleep, dental health and gastrointestinal health.
Autism and the transition to adult healthcare: Guidelines for lifelong care
Parents of teenager with autism and complex medical needs seek guidance for the transition from pediatric to adult healthcareOur teenage son, who has autism, will soon be aging out of the pediatric practice where he has a medical team coordinating care for a number of medical issues. As we start planning his transition to adulthood, we’re wondering whether there are medical guidelines for the lifelong care of individuals with autism.
Photo courtesy Ohio State Wexner Medical Center
Thank you for your very important question. Too many young adults with autism fall off the map, so to speak, in the transition from pediatric to adult healthcare. Within the Autism Speaks Autism Treatment Network (ATN), we’re working hard to help families prepare for this transition, beginning in adolescence.
I’m happy to report that one of our centers – the Vanderbilt Kennedy Center, in Nashville – has taken the lead in developing the kind of guidelines you seek.
Vanderbilt's online guidelines for healthcare providers
Health Care for Adults with Developmental Disabilities is an online tool kit for primary-care physicians. Importantly, it contains a healthcare “Checklist for Autism.” This checklist guides the physician through autism-specific considerations and recommendations for medical issues including sleep, dental health; gastrointestinal health, sexuality, mental health and much more.
The “considerations” section of the checklist highlights physical and mental health conditions that frequently co-occur with autism. The “recommendations” section lists useful exams and tests with their suggested frequency.
When it’s time for your son to transition out of pediatric care, we suggest that you bring this checklist to his new primary care doctor. What’s more, the recommendations aren’t limited to adults. They likewise include guidance on pediatric healthcare. So you may want to share it with your son’s current medical team as well.
If your son’s new doctors have little experience with autism, you might likewise share the Vanderbilt tool kit’s section on “Communicating Effectively” with patients who have developmental disabilities.
ATN/AIR-P treatment guidelines
Not coincidentally, many of the guidelines in the Vanderbilt tool kit’s “Autism Checklist” are based on best-practices developed by clinicians in the ATN. This work has been made possible by the ATN’s role as the federally funded Autism Intervention Research Network on Physical Health(AIR-P).
Last year, the journal Pediatrics published a number of our best-practices research reports in a special supplement. You can access the entire supplement – or direct your son’s physicians to it – here.
We look forward to the day when we have Autism Centers of Excellence for adult healthcare modeled after the ATN’s pediatric care centers. Until then, our clinicians continue to educate community physicians on the special healthcare and communication needs of individuals with autism throughout their lifespan.
We wish you and your family the best. Please contact us again to tell us how your son is doing.
* Find the ATN center nearest you here.
* Explore our archive of ATN expert-advice blogs and news stories here.
Got more questions? Send them to GotQuestions@autismspeaks.org.
Autism and 'optimal outcomes' – Is it time to refine our thinking?
Two experts on autism intervention urge researchers and clinicians to reconsider the goal of autism services.
For decades, we’ve heard autism described as a disorder of brain development. More recently, we’re seeing it embraced in the context of neurodiversity. Neurodiversity frames autism as an example of the differences in human brain development – with no one standard labeled as “normal.”
At first glance, the two views – disorder versus neurodiversity – may seem at odds. In “Reframing Optimal Outcomes in Autism,” in this month’s JAMA Pediatrics, we find common ground by rethinking the goals and scope of interventions such as behavioral therapies, medicines and related services. (Follow the title link to read the full opinion paper.)
In particular, we urge autism researchers, clinicians and therapists to rethink what we mean by “optimal outcomes.”
For years, we’ve been using this term to describe a relatively small group of people with autism who, with therapy and support, experience such a marked decrease in autism symptoms that they no longer meet the criteria we use to diagnose the condition.
In other words, their social communication skills improve and their repetitive behaviors and/or restricted interests decrease to a degree that’s within the range of what we might consider “normal.”
Should we focus exclusively on verbal and cognitive abilities?
But this approach focuses almost exclusively on highly verbal, cognitively able individuals as representing optimal outcomes. It overlooks the many people with autism who can communicate despite their inability to speak verbally. It likewise looks past the many people with autism who have fulfilling lives and an embracing community regardless of having aspects of intellectual disability.
Conversely, someone who has strong verbal abilities and few outward symptoms might strongly disagree with the label “optimal outcome” if he or she is unhappy, anxious or depressed.
In short, we believe that the old concept of optimal outcomes fails to appreciate the complex and variable ways that children – and adults – with autism grow and develop. It’s certainly incompatible with the idea of embracing neurodiversity.
Developing a more-inclusive optimum
Recently, mental health researchers Elizabeth Costello and Barbara Maughan proposed re-defining “optimal outcome” as the best possible outcome based on each child’s personal characteristics and available supports.
We find this as a much more suitable concept for developing autism services and setting goals for each child, teen or adult. The focus is not on reaching certain milestones related to their “typical” peers. Rather it’s on progress against personal goals such as social and community engagement and any emotional, cognitive, moral or physical aspirations.
Most importantly, we need to include the person with autism and his or her family in the conversation on identifying important and meaningful outcomes.
Changing our notion of optimal outcomes is a big step toward an inclusive spectrum approach. The next step is to consider how services and supports must change and adapt based on how a child, teen or adult develops and benefits from interventions.
In autism intervention research, knowing when to change something and to what are vital questions that we’re just beginning to address.
There is considerable agreement in the autism community that whatever “view” of autism we embrace – disorder or diversity – the immediate challenge for researchers is to deliver the evidence that people require to effectively select, personalize and adapt interventions to meet each person’s variable and changing needs.
We hope you’ll join us in this conversation by emailing us via research@autismspeaks.org.
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Autism and ‘optimal outcomes’ – Is it time to refine our thinking?
Two of the world’s leading experts on autism intervention urge researchers and clinicians to reconsider the goal of autism services
by Stelios Georgiades, co-director of the McMaster [University] Autism Research Team, in Hamilton, Ontario, and psychologist Connie Kasari, of the Center for Autism Research & Treatment, at the University of California, Los Angeles. Drs. Georgiades and Kasari both serve on the Autism Speaks Medical and Science Advisory Committee.For decades, we’ve heard autism described as a disorder of brain development. More recently, we’re seeing it embraced in the context of neurodiversity. Neurodiversity frames autism as an example of the differences in human brain development – with no one standard labeled as “normal.”
At first glance, the two views – disorder versus neurodiversity – may seem at odds. In “Reframing Optimal Outcomes in Autism,” in this month’s JAMA Pediatrics, we find common ground by rethinking the goals and scope of interventions such as behavioral therapies, medicines and related services. (Follow the title link to read the full opinion paper.)
In particular, we urge autism researchers, clinicians and therapists to rethink what we mean by “optimal outcomes.”
For years, we’ve been using this term to describe a relatively small group of people with autism who, with therapy and support, experience such a marked decrease in autism symptoms that they no longer meet the criteria we use to diagnose the condition.
In other words, their social communication skills improve and their repetitive behaviors and/or restricted interests decrease to a degree that’s within the range of what we might consider “normal.”
Should we focus exclusively on verbal and cognitive abilities?
But this approach focuses almost exclusively on highly verbal, cognitively able individuals as representing optimal outcomes. It overlooks the many people with autism who can communicate despite their inability to speak verbally. It likewise looks past the many people with autism who have fulfilling lives and an embracing community regardless of having aspects of intellectual disability.
Conversely, someone who has strong verbal abilities and few outward symptoms might strongly disagree with the label “optimal outcome” if he or she is unhappy, anxious or depressed.
In short, we believe that the old concept of optimal outcomes fails to appreciate the complex and variable ways that children – and adults – with autism grow and develop. It’s certainly incompatible with the idea of embracing neurodiversity.
Developing a more-inclusive optimum
Recently, mental health researchers Elizabeth Costello and Barbara Maughan proposed re-defining “optimal outcome” as the best possible outcome based on each child’s personal characteristics and available supports.
We find this as a much more suitable concept for developing autism services and setting goals for each child, teen or adult. The focus is not on reaching certain milestones related to their “typical” peers. Rather it’s on progress against personal goals such as social and community engagement and any emotional, cognitive, moral or physical aspirations.
Most importantly, we need to include the person with autism and his or her family in the conversation on identifying important and meaningful outcomes.
Changing our notion of optimal outcomes is a big step toward an inclusive spectrum approach. The next step is to consider how services and supports must change and adapt based on how a child, teen or adult develops and benefits from interventions.
In autism intervention research, knowing when to change something and to what are vital questions that we’re just beginning to address.
There is considerable agreement in the autism community that whatever “view” of autism we embrace – disorder or diversity – the immediate challenge for researchers is to deliver the evidence that people require to effectively select, personalize and adapt interventions to meet each person’s variable and changing needs.
We hope you’ll join us in this conversation by emailing us via research@autismspeaks.org.
to receive autism research news and expert advice posts delivered quarterly to your inbox.
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July tele-learning program: Transition
Autism Speaks tele-learning programs are live virtual presentations for families, meant to provide information about Autism Speaks and free resources available to individuals with autism and their families. Join us for transition on July 11 at 7:00 p.m. ET
July tele-learning program: Transition
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Trending on social
"Trending on social" highlights one of the many heartwarming images shared with us by the autism community on our social channels. You can find this photo and many others by following us on Facebook.
Trending on social
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If you need help and support, call the Autism Response Team (ART) at 888-288-4762 or en Español 888-772-9050, or email familyservices@autismspeaks.org.
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If you need help and support, call the Autism Response Team (ART) at 888-288-4762 or en Español 888-772-9050, or email familyservices@autismspeaks.org.
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