ARLINGTON, VA, August 14, 2024 – A recent study that adapted the Organization for Autism Research’s (OAR) online guide, Sex Ed for Self-Advocates, for use in a direct-instruction intervention found that the participants’ knowledge of interpersonal relationships increased on average between 16% and 20% on pre- and post-intervention measures.
Participants also reported the intervention as helpful, with 92% indicating that their knowledge either improved or greatly improved across all content areas, while 83% indicated that their confidence in their understanding of interpersonal relationships either improved or greatly improved. Seventy-five percent felt the sexuality and relationships class greatly applied to their goals for independent living.
A team of investigators headed by Katherine Wheeler, Ph.D., at Texas Tech University, recruited 12 young autistic adults to participate. The goal of the study was to determine whether a holistic approach utilizing direct instruction of a developed sexuality curriculum would benefit a group of young autistic adults. The researchers do not have any prior financial affiliation or conflict of interest with OAR.
The findings, published in the Journal of Intellectual Disabilities in December 2023, noted that OAR’s online guide, coupled with direct instruction, increased the participants’ understanding of sexual education and interpersonal relationships.
The research team also noted that the online guide is free and adaptable. “Given the free access to the content as well as the description provided within this paper, the accessibility of this intervention is of great benefit to other instructors working alongside the young autistic adult population.”
The research team sees the study as a first step in how to teach young adults about sexuality education and interpersonal relationships. The curriculum allows autistic adults to follow along at their own pace, incorporates videos and visuals, and asks questions, all components that make an effective intervention approach to teaching about interpersonal relationships and sexual education.
Peter Gerhardt, Ed.D., chair of OAR’s Scientific Council and executive director of the EPIC School, lauded the study and its results as a much-needed step forward in providing young adults with the information and knowledge they need to have healthy, safe, and fulfilling relationships. “Parents and educators have access to many resources to teach their children about sexuality, but far fewer resources for teaching about sexuality to autistic children. Rarer still are resources for autistic adults to learn about sexuality themselves. This study demonstrates the possibilities available to autistic adults.”
About OAR: The Organization for Autism Research (OAR) is a national non-profit organization formed and led by relatives of children and adults with autism. OAR is dedicated to promoting research that can be applied to help families, educators, caregivers, and individuals with autism find much-needed answers to their immediate and urgent questions. Learn more at www.researchautism.org.
Dating as an autistic young adult can feel overwhelming. To autistic and queer young adults, it can seem like there is an extra layer of social situations, phrases, and emotions to understand. When I began dating women, I felt as if I was entering a different world.
This blog post won’t teach you the basics of dating—OAR’s Sex Ed for Self-Advocates Dating Guide will help with that. Instead, I want to go through a few tips for staying safe and comfortable. It is important to date safely for many reasons— when you feel comfortable in your surroundings and situations, you can focus on having fun, getting to know your partner, and exploring your identity. These tips are from my own experience as an autistic cis lesbian, as well as talking with friends who identify differently than I do. Please note that these tips assume that you live in a place where publicly queer dating won’t put you in danger.
Location Sharing & Having a Trusted Person
When you are about to go on a queer date, first share your phone location with someone you can trust (and is aware of your identity). Tell them what you know about the person you will be going on a date with, what your plans are, and what time you will be returning home. Make a plan in case you don’t return home at the agreed upon time. If you agree to be home by 8 PM and aren’t, what should your trusted person do? Should they call you, or just send a text to check on you? It can also be helpful to make plans to check-in with your trusted person throughout the date. Remember that even if you live in a place where queer dating publicly is considered safe, it never hurts to be careful.
If you are still in the closet and don’t have anyone to talk about dating with, wait until you come out to a trusted person to begin dating. Trusted people are important, especially for those new to queer dating. A trusted person can help you process your new feelings—about the person you are dating, the things you do together, and your growing understanding of your own identity. They can also make sure you are dating safely, even if they aren’t queer themselves.
Boundaries
Queer dating is different from straight dating in many ways. Some things are normalized in the queer dating scene that aren’t normalized for straight people. For example, while on a queer date, it is normal to pay for yourself, or for the person who asked the other out to offer to pay. This differs from straight dates, in which it is often polite for the man to pay for the woman.
This leads me to my next point—there are various sexual and physical situations that are more normalized while queer dating. This can include things like one-time hook-ups, as well as specific sexual acts. Before you begin queer dating, ask yourself what you are comfortable with and practice stating your boundaries. If you are confronted with a situation you did not prepare for in advance, remember that it is always okay to say no. If you are unsure of how you feel in a situation, the best option is to leave.
Signals can be hard to pick up on, especially when you are new to queer dating— or dating at all! Additionally, there is a lot of new vocabulary that pertains to queer dating acts. These will take time to learn. Still, remember that the person you are going on a date with can’t read your mind. Ideally, they will ask before holding your hand, hugging, kissing, etc. but it always is beneficial to state what you are comfortable with upfront.
How “Out”?
It is important to define how “out” you are, and how “out” the person you are dating is. Are there certain places or situations where you can’t be seen in a queer relationship? Is your partner completely out in every situation? While this might not come up on a first date, it is necessary to talk about as the relationship becomes more serious and you meet each other’s friends, family, coworkers, etc. Talking about this allows you to respect each other’s boundaries and wishes. The conversation should be casual and non-judgmental, such as, “Hey, just so you know, please don’t kiss me in front of Grandma.”
Conclusion
If there’s one theme of this article, it’s that clear communication is important! This includes communicating with a trusted person and sharing your location with them, as well as clear communication with the person you are dating. Because labels and language can be hard, don’t feel that you have to communicate in a neurotypical way. If you have a question, or want to state an intention, just say it! “Hey, I had fun today. I’d like to go on another date with you because I’d like to pursue a relationship.” Stating your intention can help both individuals feel comfortable and know what the purpose of the date is.
When my now girlfriend and I started dating, she stated her intentions early on. Even though she’s neurotypical, she wanted to make sure that we were on the same page. I really appreciated this! On our first date, she ended by saying, “Hey, I’ve had fun today. You seem really cool. If we continue going on dates, you should know that being in a long-term relationship is my goal. Is that okay with you?” This let me know what her intention was, and it gave me the chance to consider what I wanted. It also gave me the chance to say yes or no. As always, clear communication is key to feeling safe, comfortable, and able to have a good time.
Noelle Hendrickson is a recent English graduate from Utah. She won the OAR Schwallie Family Scholarship in 2022, currently works with autistic young adults, and hopes to someday publish a book. She loves poetry, autism studies, disability advocacy, and cozy green sweaters. Visit her website: noellehendrickson.com.
ARLINGTON, VA, August 9, 2024 – The Organization for Autism Research (OAR) is pleased to announce the 2024 recipients of the Lisa Higgins Hussman Scholarships, Schwallie Family Scholarships, and the Synchrony Scholarships for Autistic Students of Color. This year, these three scholarships attracted 1,096 applicants, and the awards total $192,000. At 64 total scholarships awarded, 2024 marks the highest number of scholarships we have awarded since the program began. Since 2007, OAR has provided 622 scholarships, maintaining its commitment to furthering the education of remarkable and determined autistic students. With these additional scholarships, OAR has awarded a total financial contribution of more than $1,909,500.
Each of the scholarships provides a one-time $3,000 award to students with autism diagnoses pursuing post-secondary education at a variety of institutions. This year, OAR is awarding 23 Schwallie Family Scholarships to students attending four-year and two-year colleges; 22 Lisa Higgins Hussman Scholarships to students attending two-year colleges, life skills or postsecondary programs, or vocational, technical, or trade schools; and 19 Synchrony Scholarships for Autistic Students of Color to students of racial/ethnic minority backgrounds attending any form of post-secondary education. The recipients of these highly competitive scholarship awards are individuals who have demonstrated their ability to overcome personal challenges in pursuit of their ambitions.
“The Hussman Scholarship winners were outstanding this year, and I wish them much success,” says Lisa Hussman, president of the Lisa Higgins Hussman Foundation. “They were represented by students attending life skills programs, vocational programs, and associates degree programs.”
Cathy Schwallie, chair of the Schwallie Family Scholarships, stated: “The Schwallie Family is amazed at the number of amazing applicants in this year’s OAR Schwallie Scholarship submittals. This year we gave out 23 scholarships, and each one is a stellar young member of the neurodiverse community. We continue to be honored to support these amazing and unique students.”
Amar Malik, Community and Citizenship Leader of the Synchrony EnAbled+ Network, stated: “Autistic students of color continue to be underdiagnosed and under-resourced. Synchrony and its diversity network, The EnAbled+ Network, are proud to support the Organization for Autism Research, helping these exceptional students pursue their academic goals and shining a light on this well-deserving community.”
Congratulations to this year’s scholarship recipients!
Lisa Higgins Hussman Scholarship
- Garrett Agresti, Philips Academy – Charlotte, NC
- Noah Billings, Riverland Community and Technical College – Albert Lea, MN
- Seth Butler, University of Arizona – Tucson, AZ
- Ryan Cennamo, Coastal Carolina University – Conway, SC
- Elijah Deml, Lipscomb University – Nashville, TN
- Dashiel Francis, CIP Berkshire – Lee, MA
- Payton Hepler, Western Carolina University – Cullowhee, NC
- Nathan Howard, Chandler Gilbert Community College – Chandler, AZ
- Kyle Hume, University of South Florida – Tampa, FL
- Asa Keane, Threshold Program at Lesley University – Cambridge, MA
- Gabriel Layson, Automotive Training Center – Exton, PA
- Michael Maraldi, National Lewis University – Chicago, IL
- Steven Noland, Alaska Vocational Technical Center – Seward, AK
- Sawyer Nye, Auburn University – Auburn, AL
- Ethan Seibel, Dakota College at Bottineau – Minot, ND
- John Sharon, FUTURE @ University of Tennessee – Knoxville, TN
- Tyler Solomon, Thames Program at Mitchell College – New London, CT
- Gabrielle Strand, Bellevue College – Occupational & Life Services – Bellevue, WA
- Dakota Thill, University of Central Missouri – Warrensburgh, MO
- Kellen Trout, Lane Community College – Eugene, OR
- Matthew West, Full Sail University – Winter Park, FL
- Andrew Yeager, Clemson University (Clemson Life) – Clemson, SC
Schwallie Family Scholarship
- Cadyn Baker, University of Arkansas – Fayetteville, AR
- Grace Barnet, Viterbo – LaCrosse, WI
- Adam Beane, The Ohio State University – Columbus, OH
- Holly Connor, Webster University – Webster Groves, MO
- Amelia Cordova, Elizabethtown College – Elizabethtown, PA
- Alexander Croft, Liberty University – Lynchburg, VA
- Micah Deyo, Indiana University of Pennsylvania – Indiana, PA
- Joshua Dobson, University of Central Florida – Tampa, FL
- Timothy Everett, Illinois State University – Normal, IL
- John Geraci, Merrimack College – North Andover, MA
- Adam Johnson, Arkansas Tech University – Russellville, AR
- Aspen Jones, Muskingum University – New Concord, OH
- Kali Killingsworth, Arizona State University – Tempe, AZ
- Lola Leeman, UC Santa Cruz – Santa Cruz, CA
- Joshua Miller, Tidewater Community College – Virginia Beach, VA
- Jak Perdew, Western Kentucky University – Bowling Green, KY
- Walker Raubuch, Washington State University – Pullman, WA
- Avery Ricks, Brigham Young University-Idaho – Rexburg, ID
- Callie Salazar, Loyola Marymount University – Los Angeles, CA
- Savannah Swaye, Chatham University – Pittsburgh, PA
- Ian Urinsco, UC Irvine – Irvine, CA
- Madison Watson, Grand Valley State University – Allendale, MI
- Andrew Woods, Ohio University – Athens, OH
Synchrony Scholarship for Autistic Students of Color
- Kamila Almazan, University of Houston – Houston, TX
- Daniel Bi, Vanderbilt University – Nashville, TN
- Amber Brown, University of Alabama – Tuscaloosa , AL
- Alivia Collins, Longleaf School of the Arts – Raleigh, NC
- Caitlin Curtis, University of Texas at Dallas – Dallas, TX
- Jocelynn Dow, Rutgers University – New Brunswick, NJ
- Mikayla Grant, Austin Peay State University – Clarksville, TN
- Jessenia Jackson, University of Texas at San Antonio – San Antonio, TX
- Madison Keaton, Virginia Commonwealth University – Richmond, VA
- Mekah’E LeClair, DigiPen Institute of Technology – Redmond, WA
- Carlos Monterroso, Brightpoint Community College – Midlothian, VA
- Victoria Nguyen, California State University Long Beach – Long Beach, CA
- Raj Patel, Florida State University – Tallahassee, FL
- Katy Perez, California State University Long Beach – Long Beach, CA
- Miles Rivera, Ramapo College of New Jersey – Mahwah, NJ
- Mickael Tatum, Florida Southern College – Lakeland, FL
- Michael Velarde, University of Southern California – Los Angeles, CA
- Jonathan Walton, New York University – New York, NY
- Jayda Williams, University of San Diego – San Diego, CA
OAR congratulates each of the 64 recipients and extends its gratitude once again to the Lisa Higgins Hussman Foundation, the Schwallie Family Foundation, and the Synchrony Foundation. These scholarships would not be possible without their generous support.
OAR’s annual scholarship awards help autistic students pursue their educational goals. The next open application period will begin in December 2024. More information, including the link to the application portal once it opens, can be found on OAR’s Scholarship Page.
About OAR: The Organization for Autism Research (OAR) is a national non-profit organization formed and led by relatives of children and adults with autism. OAR is dedicated to promoting research that can be applied to help families, educators, caregivers, and individuals with autism find much-needed answers to their immediate and urgent questions. Learn more at www.researchautism.org.
Throughout my life, as far back as I can remember, I was a weird kid who happened to be lucky enough to have been born into a weird family. I love my family and loved my life as a child. We lived in very small towns with lots of forest nearby and I spent a lot of time outdoors in nature. We never had a lot of money or stuff that money could buy, but it never mattered because there weren’t a lot of people around to point that out.
I wasn’t what anyone would have called a “girlie girl,” but I wasn’t really a tomboy either. I was more like a contradictory mish-mash of traits that changed from day to day. Sometimes, all I would want to do was stay inside my room and read an entire book or three. I was reading several years above my grade level throughout my childhood. Other days I would put on a skirt or dress that flared out so I could spin around and feel the air on my legs, only to get distracted by my friends heading to a dirt bike track or my siblings playing in mud in the garden. Mostly, if someone outside my immediate circle of people put any kind of label on me, I would immediately do the opposite to prove them wrong. I may not have known who I was then, but they absolutely did not know me either.
I was identified as gifted in 1st grade and skipped 2nd grade. Then I was in accelerated or self-paced classes whenever they were available at the small school district we were in at the time. When my parents decided to move to a bigger town for me to go to high school and have more opportunities for music and advanced math and science classes, the whole gifted thing was not recognized and I was effectively mainstreamed, doing mostly busy-work for much of my remaining 5 years until graduation. That was my first taste of being personally underserved by the public institutions that I believed so strongly in.
It was during high school that I pretty much came to understand that I was very different than most other people. I had a couple friends, and we did really random, creative, and fun things that no one else was doing, but I never felt understood by any of them. If I didn’t get too deeply philosophical or down some other “special interest” rabbit hole, at least they would hang out with me. I spent much of my teenage years being both deeply afraid that I would be truly seen and then rejected for who I naturally was and pretending to be normal enough to hang out with the band kids, the theater kids, the stoners, and the nerds.
Being able to play the saxophone, which is also kind of a weird instrument, and being naturally musical gave me an anchor to hold onto. I loved to listen to music on the radio, and on New Year’s Eve every year I wouldn’t leave the house or my room because I would be busy with an ear flex to the radio, documenting that year’s countdown of the best songs of the year. I recall being particularly distressed one year when I had to go out for something, and I left my little sister to listen and document for me the songs that I missed and she did not care at all about this project of mine. I guess my offer of candy or whatever I was going to pay her with wasn’t enticing enough. It wasn’t like I could just look it up later; the internet didn’t exist yet.
As an adult, I think much of my life has been informed by my high school years. I never expected to be understood or accommodated and I take full responsibility for my own boundaries or lack thereof. I tolerated a lot of discomfort by choice because I couldn’t find a better situation for myself that didn’t come with what I saw was intolerable risk. I have never been entrepreneurial. My only experience with a family member running a business was my aunt and she didn’t have the kind of life I saw myself having. She worked too much, was isolated personally, and didn’t always have good relationships with her employees.
I have said about myself that “I could do anything if I only knew what it was,” and that still rings true for me. When my passion is ignited, I can do amazing things. My brain works exceptionally well at seeing patterns and connections in completely different realms of human systems, but most of the time, when I try to communicate these patterns to others, they either do not have the capacity to understand me or don’t want to. My best thinking is done with a strong second person who will challenge my assertions and question my theories and those people are elusive. I think it has taken me this long in life, along with the process of reframing that inevitably follows a late identification of autism, to understand that I’m not just some underperforming “normal” person. My path is supposed to be different, and that is really not supported or appreciated in a culture that reinforces and promotes hierarchical organizations based on neurotypical values.
This is especially true for women. Women are constantly being judged and evaluated, often subconsciously, by everyone. My close ties to my family and previously supportive workplace have given me support from which to draw inspiration and strength, but there are many times when I think life would be so much simpler if I could just follow the unwritten rules and follow through with the life milestones that others expect for women. I have been highly attuned to all those messages from early on, which gave me something to push against, but I have never really felt like I had the space to learn who I was or am outside of the frame of society’s expectations.
As I have come to embrace my identity as an autistic woman, I have found a sense of true community among other neurodivergent folks, across all ages, genders, races and ethnicities. The common thread we all have is a persistent sense of otherness for sometimes completely obscure or enigmatic reasons. And this sense of otherness is what brings us together now. By sharing our stories with the depth of soul and empathy that we have a tendency to be able to conjure with more ease, we create and hold space for one another in our ever-growing community. We also tend to be fiercely loyal, which can make us vulnerable to being taken advantage of by unknowing or unscrupulous folks around us. By surrounding myself with more autistic and neurodivergent people lately, I’ve started to feel capable of trusting others again, since this community is so earnest and will share very deeply when given a friendly shoulder to lean on.
Four and a half years into my autism journey, I wouldn’t trade this life experience for anything, though I do wish I had this bit of self-knowledge earlier in life. Ideally, I think in one’s 20s would be a great time to be identified because you are already at the age where you are trying things out and defining who you are in the world. I feel like quite the late bloomer going through this process again (or perhaps finally?) in my 40s. I do feel like this is a magical time to be alive because we are building a whole new set of knowledge building blocks and criteria for the next generation. With any luck, in my lifetime I will see significant progress made toward systemic inclusion in organizations and more autistic leaders creating space for everyone to work together more effectively to solve the world’s problems. I believe the human race will not endure if we do not make these changes as soon as possible and I look forward to being part of that change.
Jessica Jahns is a 40-something woman living in Portland, Oregon. She works full time as an automotive data analyst for a well-known company and part time for the non-profit, Umbrella US, that she co-founded in 2023. She was identified autistic 6 months before the start of the pandemic and both events changed her life thoroughly. In her spare time, she likes to write, read, watch the news or a basketball game, cuddle with her dogs, kayak or tent camp with her husband and family or just enjoy her backyard from her hammock.
The Report on the Condition of Education 2024, recently released by the U.S. Department of Education’s National Center for Education Statistics, found that, in 2023, a record number of students with disabilities were enrolled in an educational institution.
As noted in the report, “the number of U.S. students ages 3–21 served under IDEA increased from 6.4 million in school year 2012–13 to 7.5 million in 2022–23. Taken as a percentage of total public school enrollment, this equates to an increase from 13 to 15 percent of students.”
The report goes on to say that in Pennsylvania, New York, and Maine, the percentage was 21%, the highest among the 50 states. It was 12% in Idaho and Hawaii, the lowest percentage.
The rising number of special education students is cause for concern, as described in an article in The Wall Street Journal and summarized on the Safe Minds website. That article reported that schools are struggling or failing to meet the needs of this influx of students. The Safe Minds article noted that The Wall Street Journal explained that the recent surge was “driven by pandemic disruptions and reduced stigma” causing schools to struggle to meet student needs.
Significant staffing shortages and budget constraints, made worse by the end of federal COVID relief aid, also contributed to the struggle. In addition, The Wall Street Journal reported that special education teachers noticed increased mental health issues and extreme behaviors among students, which required more support like personal aides.
The Pew Research Center, in an article detailing federal education data about students with disabilities, noted that “during the 2020-21 school year, 40% of public schools that had a special education teaching vacancy reported that they either found it very difficult to fill the position or were not able to do so.” Additionally, the Pew report found that 44% of private schools found it very difficult, or, were unable to fulfill vacancies in special education. This information came from Characteristics of 2020–21 Public and Private K–12 Schools in the United States, a report released by the Institute of Education Sciences in December 2022.
Ben VanHook is an AuDHD (autistic and ADHD) master’s student at George Mason University studying public policy and is currently employed at OAR as the community support coordinator.
Hire Autism welcomes eight talented volunteers joining Hire Autism as navigators. Congratulations to Lavanya Nayar, Laura Maltz, Kerrie Barry, Meenakshy Kavassery, Tamara Green, Stephanie Sutton, Laila Vasquez, and Alexis Clements!
These volunteers come from various personal and professional backgrounds, holding positions such as special education teacher, practice manager, administrative assistant, and trial attorney.
Hire Autism navigators help equip job seekers with the tools necessary to independently take on the job search and meet their employment goals. They use their professional experience and expertise to help job seekers refine their resumes and cover letters and polish their interview skills.
Max, a recent job seeker, said this about his experience working with a navigator: “Massive thanks for the services. It was easily the best experience and charity I had with autism-related job searching. Would recommend to anybody I know on the spectrum.”
Are you or someone you know interested in mentoring autistic job seekers? Apply for our October 2024 navigator cohort. Applications will be accepted until Friday, October 4, 2024, at 11:59 p.m. ET.
If you have questions about the Navigator Program or other volunteer opportunities, contact the Hire Autism team at mail@hireautism.org
We are thrilled to announce OAR’s inaugural Chip In Fore Autism Tournament at Topgolf National Harbor on September 21, 2024. This fundraising event is an exciting opportunity to come together, enjoy a fun-filled evening, and make a significant impact on the lives of autistic individuals and their supporters.
What to Expect at Chip In Fore Autism
At Chip In Fore Autism, participants will enjoy the blend of golf and entertainment that only Topgolf can provide. Whether you’re an experienced golfer or a complete novice, you’re guaranteed to have a blast. Here’s a glimpse of what’s in store:
- Friendly competition: Compete in a fun and relaxed environment with friends, family, and colleagues. Prizes await the top performers.
- Delicious food and beverages: Enjoy a variety of tasty food and drink options throughout the evening at the full buffet and open bar.
- Silent auction: Bid on fantastic items and experiences, with all proceeds supporting autism research and resources.
- Networking opportunities: Connect with other members of the local autism community, including families, supporters, and advocates.
Why Your Participation Matters
By registering for Chip In Fore Autism, you’re not just signing up for an evening of fun—you’re contributing to a cause that makes a real difference. The funds raised from this event will go directly towards OAR’s mission of funding groundbreaking research and providing essential resources to autistic individuals and their families.
How to Get Involved
- Register today: Don’t miss out! Register now as a player or spectator to secure your spot in this fun and festive event.
- Become a sponsor: By sponsoring, you’ll be demonstrating your commitment to supporting the autism community. Sponsorship opportunities come with a range of benefits, including prominent recognition at the event and in all promotional materials.
Join Us in Making a Difference
Chip In Fore Autism is more than just an evening of golf—it’s a chance to bring the community together and support a cause that truly matters. Whether you’re participating as a player, enjoying the festivities as a spectator, or contributing as a sponsor, your involvement will have a lasting impact. For more information, please contact us at info@researchautism.org.
Together, we can chip in for a brighter future for the autism community. See you there!
According to the Centers for Disease Control and Prevention (CDC), one out of 36 students has autism spectrum disorder (ASD). OAR’s Kit for Kids peer education program is designed to support the growing population of autistic students by teaching elementary and middle school students about autism, empathy, diversity, and friendship. The cornerstone of the program is a children’s book called “What’s Up with Nick?,” and includes comprehensive materials such as lesson plans and activity workbooks.
Who Can Get Involved
School districts. This year, OAR is committed to partnering with school districts to promote autism-friendly learning environments among general education students in grades K-8. OAR offers funding support as well as free consultation on the development of autism acceptance campaigns and curricula. To work with OAR on developing a district-wide or multi-year peer education plan, contact us at programs@researchautism.org with the subject line, “K4K Partnership.”
Individuals looking to make an impact in their local school or organization. Beyond district-wide efforts, we invite anyone interested in promoting autism acceptance to get involved. Whether you want to start an autism peer education initiative in your school community or focus one of your Girl Scout troop meetings on autism acceptance, these materials are a great way to get started.
Volunteers. Need volunteer hours? Apply to be a volunteer youth education leader to teach this program in the school setting.
Kit for Kids Resources and How to Order
Each Kit for Kids Classroom Set includes one of each of these components:
- Twenty “What’s Up with Nick?” booklets
- Lesson plan
- Classroom poster
- How-to-use sheet
- Lesson tips sheet
Now through the end of October, you can order the “What’s Up with Nick?” booklets and Kit for Kids Classroom Sets for free using the coupon code K4K100:
Additionally, for a limited time, you can order the Kit for Kids Activity Workbooks and Friendship Tip Sheets for 75% off with the coupon code SCHOOL75:
Place your order today to start planning an autism acceptance initiative in your community!
Together, we can reach our goal of teaching 30,000 students in grades K-8 about autism, empathy, diversity, and friendship. For questions about the peer education resources or how to get involved, contact us at programs@researchautism.org.
Back-to-school season brings the excitement of new beginnings. For parents who have a child entering special education or whose child is starting a new year in special education, it can be stressful as well as exciting. Many teachers, administrators, and school support staff lack the background and training to meet the unique needs of autistic students. It often falls to parents to make sure that their child’s challenges, whether with social interactions, communication, or behavior, are addressed with research-based interventions within the school setting.
OAR is here to help. Our guide, Navigating the Special Education System, gives parents the information and tools needed to successfully navigate the education system anywhere in the country. More specifically, it offers: 
- Background on special education in the United States
- An understanding of the laws and regulations about special education
- An overview of the timeline of services
- A detailed explanation of Individualized Education Programs (IEPs)
- Tips and techniques for being an effective advocate for your child
- Sources and links that will help you identify specific state resources and find more in-depth information
- Lists and definitions of terms that are frequently used in school systems
Download a PDF version of this guide or order up to two free paperback copies.
“Your child has autism.” These words mark the beginning of a complex and often overwhelming journey for many parents. For me, they were not only a call to understand my son Josiah’s unique needs but also a call to navigate the intricate world of special education (SPED) law. As both a parent of an autistic child with co-morbid conditions and learning disabilities and a SPED attorney, I have a unique perspective on the IEP process. These are the valuable lessons I have learned that have significantly benefited Josiah’s education.
Understanding the IEP Process
An IEP is a legally binding document tailored to meet the specific educational needs of autistic children. It outlines goals, accommodations, and services the school will provide. The journey begins with assessments and meetings involving educators, specialists, and, crucially, you—the parent. Your active participation and advocacy are essential from the start.
Lessons Learned from the IEP Process
The biggest lesson: personalization and flexibility: The most impactful lesson I learned from the IEP process was the profound benefit of a personalized and flexible approach. Every autistic child has unique strengths and challenges, and their educational plans should reflect this individuality.
Necessity of advocacy: We must be strong advocates for our children. Schools have resources, but ensuring those resources are tailored to your child’s needs requires persistence and clear communication. I recall an IEP meeting where Josiah’s need for speech therapy was grossly underestimated. Instead of identifying his need for speech therapy according to his disabilities, the school had erroneously determined that Josiah was an English language learner (ELL) and had placed him in ELL classes in lieu of SPED services. By presenting detailed observations and reports from an external speech therapist, establishing his native English language speaking status, and identifying his needs according to his communication and speech language deficits, I successfully advocated for increased speech therapy services, which made a significant difference in Josiah’s communication skills and access to the educational environment.
Effective preparation: Thorough preparation for IEP meetings is a must. This involves gathering all relevant documents, assessments, and reports and distributing them to the IEP team. Also, understanding your child’s rights under the Individuals with Disabilities Education Act (IDEA) can empower you to advocate more effectively. This includes being aware that you can (and should) record all IEP-related meetings. (Be aware of what the notice requirements for recording IEP meetings are in your state as they vary.) So much is discussed during these meetings that it is imperative that they be recorded to understand how the team reached decisions in developing a student’s IEP.
Before each IEP meeting, I would request updated data and information from the school members of the IEP team and compile a comprehensive digital folder of Josiah’s recent work, progress reports, and notes from therapists. I would then provide the link to these documents to school team members and request confirmation that they had received and reviewed the documents. This preparation allowed me to present a well-rounded picture of Josiah’s needs, facilitating more productive discussions.
There were meetings in which the school team members had failed to review these documents. For example, in one such meeting, I was able to leverage the school’s lack of preparation to draw greater focus to the need, which was reading, and ultimately Josiah received more support and compensatory services for the delay in providing him adequate reading services.
Building collaborative relationships: Building collaborative relationships with educators and specialists is vital. Approach the IEP process as a partnership. Effective communication and mutual respect can lead to more meaningful and actionable plans. Throughout his education, Josiah’s needs made him a target for bullying. His teachers and I maintained regular email updates and monthly meetings. This consistent communication helped us promptly address the bullying and adopt strategies that resulted in a more supportive and safe learning environment. When there was disagreement between me and the school members, we were able to request updated assessments and/or independent educational evaluations and rely on that data to resolve the dispute. We disagreed without being disagreeable. This is not to say that there was never any tension, but that due to the foundation of collaboration, issues were resolved to Josiah’s benefit.
Tailored goals: Setting specific, achievable goals tailored to your child’s abilities can lead to remarkable progress. The first step is to identify your child’s needs according to their disabilities and then ensure there are appropriate goals and services for each area of need. Also, instead of broad objectives, develop measurable and discrete goals.
For example, rather than a broad goal stating that Josiah would improve his social skills, we developed goals that tracked specific improvements in social interaction through structured group activities. One such goal stated: “Josiah will demonstrate appropriate pragmatic language skills and will contribute on-topic comments to conversations and discussions in group settings on three out of four opportunities measured biweekly.” This goal had short-term objectives:
- “Self-monitoring: Josiah will self-monitor to ensure he is making appropriate and on-topic comments during class discussions by making no more than three inappropriate comments in all academic classes as measured bi-weekly (inappropriate comments are defined as off-topic or rude)”
- “Identification: Josiah will be able to identify inappropriate comments and what makes them inappropriate when working in contrived settings on three out of four opportunities measured quarterly.”
This targeted approach helped Josiah make progress and gain confidence.
Adaptability: An effective IEP is not static. It requires flexibility and a willingness to adapt based on your child’s evolving needs and progress. Regular reviews and updates ensure that the IEP remains relevant and effective. For example, at mid-year, we held IEP team meetings to review data related to Josiah’s academic and functional performance and adjusted his goals, accommodations, and services as necessary.
Practical Tips for Parents
Prepare for IEP meetings:
- Gather all relevant documents and reports.
- Prepare a list of questions and concerns.
- Review the current IEP and progress reports.
Stay informed:
- Keep updated on special education laws and resources.
- Attend workshops and join support groups. Connecting with other parents, advocacy organizations, and support groups can provide valuable insights and emotional support.
Navigating the IEP process is a journey filled with challenges and triumphs. By advocating for your child, collaborating with educators, and embracing a personalized approach, you can create a supportive and effective educational plan. Remember, your efforts can make a profound difference in your child’s education and overall well-being. Share your experiences, support each other, and continue to learn and adapt. Together, we can ensure our autistic children receive the education they deserve.
Grace Eunjung Kim is the principal attorney at The Law Office of Grace E. Kim, P.C., specializing in special education and education law. Since 2002, she has advocated for children with disabilities, motivated by her experience as a mother of a child on the autism spectrum. She transitioned from working in faith-based organizations to law, earning her J.D. from George Mason School of Law. She lectures on special education law, co-founded Partners in Promise, and is an Air Force spouse. She lives in Virginia with her husband, Air Force Chaplain Col. Joshua Kim, and their children, Karis and Josiah.
