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OARacle Newsletter

Alarming statistics from a study done by researchers at Kennedy Krieger Institute indicate that suicidal thoughts and behaviors may begin in autistic children at a very early age. Responses from over 900 caregivers of autistic children ages 8 to 17 were analyzed in a nationally distributed survey. According to the study published in JAMA Pediatrics in early April, among parents of children 8 years old and younger: 

  • 36.2% reported their child wanting to die. 
  • 35.3% reported their child wanting to end their own life. 
  • 18.1% reported their child having a suicide plan.

“The results are concerning,” noted Dr. Benjamin Schindel, a fellow in Neurodevelopmental Disabilities at Kennedy Krieger Institute and lead author of the paper. “We were very surprised to find that the expression of suicidal ideation began so young in these children with ASD. This rate seems to be significantly higher compared to their neurotypical peers.”

The original point of collecting the data was to develop a better awareness of suicidal thinking among autistic children, he said. However, when the number of particularly young children having such thoughts was revealed, the urgency behind this research shifted.

One of the major concerns, the research team said, is that limited suicide screening tools and interventions are available for young children with developmental disabilities. Dr. Schindel noted that Kennedy Krieger has begun screening their patients starting at age 8.

The survey was completed by participants in Kennedy Krieger’s Interactive Autism Network. Among all parents surveyed: 

  • 40.5% reported their child wanting to die. 
  • 19.3% reported their child wanting to end their own life. 
  • 7.4% reported their child having a suicide plan.

Dr. Schindel urged parents to “check in on their children’s mental health and alert their health care providers if there are concerns so that they can be connected to preventive mental health services, like counseling and, in some cases, medication.”

Dr. Paul Lipkin, a neurodevelopmental pediatrician and professor of pediatrics in the Center for Development and Learning at Kennedy Krieger Institute and a member of the research team said the results illuminate the need for further research to find out if suicidal thoughts among autistic children translate to actions. “We need to have an open dialogue about these statistics to help fight the stigma and make sure these children are getting the help and support that they need.”

Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.

Shea Savage started her job as development associate on April 3. Her primary goal is to identify resources that will enable OAR to continue providing information and services to autistic people and their loved ones. She looks forward to “connecting with donors in positive and meaningful ways” to increase OAR’s impact on the autistic community.

“I love that I’m working with an organization that focuses on quality of life and improving opportunities for autistic people and their communities in the here and now,” Savage said, noting that her younger brother, Jack, is autistic. “In my home state of Vermont, I grew up connected to people with intellectual and developmental disabilities, thanks to community events I attended with my brother, volunteer positions with Special Olympics, and my time working as a one-on-one personal care provider. In addition to my relationship with my brother, I also have several close autistic friends.” Because of Jack, she is particularly excited to see that OAR’s resources don’t stop at childhood, but touch on every part of life.

Her professional experience includes a position as a personal care attendant, supporting individuals with physical and intellectual disabilities so that they could participate in community activities and volunteer work. While she was an undergraduate, Savage worked as a global human rights and advocacy intern, preparing for and facilitating an advocacy day on Capitol Hill for Special Olympics. During that internship, she also created a video on the United Nations Convention on the Rights of Persons with Disabilities.

She received a master’s degree in ethics, peace, and human rights with a concentration in human rights and social justice from American University in 2023 and a bachelor’s degree in political science from George Washington University in 2020.

Her work at OAR is off to a good start, Savage noted, with a warm and supportive welcome from staff. “It’s clear that OAR staff is a very passionate and talented group, and I feel very lucky to be working with them.”

The sixth annual Active for Autism 5K & Kids Dash raised over $55,000 for OAR’s Changing Lives Fund. This year, 416 virtual and in-person participants, representing two countries and 27 states plus Washington D.C., dedicated their miles to autism research. OAR is grateful to all the participants, fundraisers, donors, and sponsors who helped to make this event an outstanding success! We’re already looking forward to next year.

Check out our 2024 Active for Autism 5K & Kids Dash pictures on the RUN FOR AUTISM Facebook page. Follow the page to stay up to date on all future RUN FOR AUTISM events.

You can also support OAR and autism research this year by joining the RUN FOR AUTISM team for the 2024 Marine Corps Marathon, 10K, or 50K.

If you are interested in joining us for the 2025 Active for Autism 5K & Kids Dash, sign up for the interest list and we’ll email you when registration opens.

Hire Autism posts featured articles on various employment topics to provide much-needed answers to common job search-related questions. Read the newest articles:

To make sure you see all the newest information, sign up for Hire Autism’s monthly newsletter by creating an account.

Have a topic you would like to see us write about? Email us at mail@hireautism.org. 

OAR has helped educate more than 194,000 children through the Peer Education program since 2012. With the second cycle of grants, which opened on April 15, OAR continues its commitment to fund peer education and the promotion of autism awareness and acceptance in grades K-8 using the Kit for Kids program materials. Starting this year, OAR will award grants of up to $10,000 for school district-wide projects; OAR will continue to award grants ranging from $500 to $5,000 for all other projects of lesser scope.

Who Can Apply?

Teachers, administrators, parents, youth group organizers, and autism professionals interested in organizing an autism awareness initiative at a school or other community-based organization may apply. Eligible organizations include but are not limited to K-12 public schools, districts, libraries, and 501(c)(3) non-profits in the United States. This includes U.S. military installations overseas. School districts and organizations that serve low-income communities are strongly encouraged to apply.

See the application for further instructions and details.

What Does the Grant Cover?

OAR supports projects that use OAR’s peer education materials to increase autism awareness and acceptance among students in kindergarten through 8th grade. Examples of projects include awareness campaigns, workshops, and presentations. Eligible expenses include, but are not limited to, OAR’s peer education materials, print costs, honorariums and travel expenses for guest speakers, venue rental, and refreshments.

When Are Applications Due?

OAR is currently accepting applications until June 24, 2024, for projects starting as early as September 1, 2024.

How Do I Apply?

Get more information and the application on OAR’s website. For questions and comments, contact Vivian Muhumuza at programs@ researchautism.org.

While Autism Acceptance Month has come and gone, we know many of you wish to remain active, do more for the cause, or start something new. Here are some ways to do just that.

Volunteer Your Time

Are you a parent, educator, or autistic individual who:

  • Wants to share your unique advice or story with others through a blog post? 
  • Is interested in teaching children about autism acceptance? 
  • Would enjoy distributing informational resources to organizations in your community in need of autism supports? 
  • Would like to work one-on-one with an autistic job seeker to help them find employment? 

If you answered yes to any of these questions, OAR is always looking for more volunteers. Learn more and apply today.

Raise Money for Autism Research

Do you:

Show Off Your Impact

Share your photos and feedback: 

Many of OAR’s successes reflect the commitment and hard work of volunteers, donors, and followers. You are one of them. Thank you for joining our April campaign and for continuing to stay involved with us throughout the year!

Autistic individuals deserve access to health information that’s tailored for their needs. Do you want advice on how to advocate for yourself at your next doctor’s visit? Are you wondering how to discuss important topics like puberty, dating, sexuality, and sexual assault with an autistic teen or adult in your life? These OAR-created and funded resources offer information for autistic individuals and their families about physical, mental, and sexual health.

Sex Ed for Self-Advocates 

This guide is a sexuality and sex education resource written specifically for autistic people age 15 and up. Autistic people sometimes don’t have the chance to learn about sexuality and sex in ways that work for them, so OAR created this guide as a starting point to change that. In each of the nine sections of the guide, self-advocates will be able to read articles and watch brief videos before testing their knowledge about a given topic and practicing new skills. This is also a great resource for parents and caregivers to use in early conversations about sex education with their autistic family member.

A Mental Health Guide for Autistic College Students 

Every student experiences stress at some point during college. Created by a team led by Vanessa Bal, Ph.D. and Evan Kleiman, Ph.D. at Rutgers University, OAR’s Mental Health Guide for Autistic College Students is intended to help autistic students promote their own well-being and know when and where to seek mental health services during college. The guide addresses challenges that may come up, as well as tips to promote well-being and cope with feeling overwhelmed. It also offers practical advice for navigating access to mental health care for autistic college students and their parents.

Everything is Connected to Everything: Improving the Healthcare of Autistic and ADHD Adults 

All Brains Belong VT created this online resource that provides guidance for medical professionals and autistic individuals in addressing multiple health conditions and improving the health of autistic patients. Autistic and ADHD adults often have multiple intertwined health conditions, yet the healthcare system can get in the way of clinicians addressing multiple medical problems at one time. Treating these intertwined medical conditions as separate may result in a person not getting better. Thinking of these medical conditions as a group (or cluster/constellation) may result in more improvements. OAR and the Autism Intervention Research Network on Physical Health (AIR-P) provided funding for this resource through the Community Grant Competition.

Search & Snicker™: Conversations About Relationships & Sexuality  

Search & Snicker™: Conversations About Relationships & Sexuality offers important tools needed to provide healthy guidance about intimate relationships to autistic adults and other neurodivergent individuals. Developed by First Place AZ and informed by the neurodivergent community and best practices, the guides are available as PDF downloads targeted at three distinct groups: family members, direct service providers, and healthcare providers. OAR and the Autism Intervention Research Network on Physical Health (AIR-P) provided funding for these guides through the Community Grant Competition. 

I am the mom of four amazing kids (Connor, 25; Riley, 17; Grace, 12; and Kane, 8). I work as a life coach, teaching advocacy skills to parents to assist them in advocating the best they can in and outside of the school system. I am also working on my master’s degree in counseling. I have been involved with OAR for 10 years, and I will be running the Chicago Marathon as part of the RUN FOR AUTISM team for the tenth time this year. I have two sons with autism and have spent years spreading awareness and educating others about autism. My kids have taught me so much about life, and it has certainly been an adventure. I am so very blessed to be their mom, and, though we have had our share of challenges, I wouldn’t change a thing. We are Team Fink and “we commit, we don’t quit!”

My oldest son was 7 when he was diagnosed with autism. I remember sitting with him to tell him that we had a meeting to go over all the tests they had done and that he has autism. Many people didn’t know a lot about autism when he was diagnosed. There were no motivational blogs or support groups. I felt alone and scared because all I read were the things my son wasn’t going to be able to do, like live on his own, maintain a job, show empathy, and the list goes on. I told my son, “We are going to have to work hard to overcome some things, but we can do it. We are going to have to write our own story.” And we did.

He went on to make friends, be kind and empathetic, and graduate from college. Today, he lives on his own in a different state and works as a manufacturing engineer. What a story he is writing!

My second son was diagnosed with autism at 15 months old. He was nonspeaking until he was about 5. He was in therapy for many years (occupational therapy, physical therapy, speech therapy, and developmental therapy). We hit the jackpot with his supportive therapists. I don’t remember ever having a formal conversation with him about his diagnosis.

I raised my kids to know that everyone has challenges in life, some you see and some you don’t. I raised them to believe that your challenges don’t make you who you are, they are just a part of who you are.

When my younger son was 8, he asked a lot of questions about his diagnosis and said he remembers looking at it as a good thing with lots of perks. He viewed his individualized education program (IEP) in such a positive way due to all the “perks” that helped him succeed in school. How cool is that! He and his older brother knew they had autism, but it didn’t define who they are, it was part of who they are. 

He is now 17, a junior in high school with lots of friends. He is a talented runner for his school’s cross country and track teams. He is thriving. He too has the opportunity to go to college and have the experience of living on his own. I know that no matter what struggles lie ahead, he will get through it because he works so hard at everything he does. He doesn’t know how to quit.

My sons have and continue to learn to accept their autism diagnosis. Some days are harder than others, and some days we come across people who don’t understand, which makes life hard for them to navigate. I encourage them to work hard on their goals, not give up, and remember to accept themselves and not let others get them down. I also remind them how much they have overcome and encourage them to keep fighting every day.

The biggest thing I taught them was how to advocate for themselves. It started at home with learning to request things in an appropriate manner. I had them attend their school meetings and IEPs as early as elementary school. A lot of people asked me why I would have them there. It was important for them to see their team working hard to make sure they were successful as well as seeing their mother advocate for them to get what they needed to succeed. Watching me effectively and appropriately advocate for their needs helped them learn to do that for themselves. By ninth grade, each son was able to advocate for themselves in their school meetings and get the help they needed. They now advocate for themselves in all aspects of their lives. This is one of my greatest accomplishments as a mother.

I have learned a lot about life and people in the process of raising all my kids. They have taught me that we can do hard things. We can face adversity, put in the work, and rise above the challenges. You could say we thrive on the challenges in our lives. There are also real struggles, and we may kick and scream the whole way through, but taking the time to celebrate the victories along the way is the best part. I should have done more of that.

Celebrating the “small” victories is so important. When my boys were little, I didn’t take the time to celebrate the things they were accomplishing because when one thing was accomplished, another issue arose and we had to figure out how to help them. I missed some opportunities to praise my kids and show them to take the time to be excited about achieving goals. Now we celebrate all the successes.

We continue to face new challenges as they grow, but we set goals and put plans in place to achieve those goals. I remember feeling like I would never see the light at the end of the tunnel. As the years have gone by and the hard work has paid off, we see it getting brighter and brighter as the days go on.

My kids have inspired me to try new things and have given me the courage to push through my own struggles as their mom. They have taught me that working as a team is key. By working as a family, we have managed to overcome a lot and strengthen our bond. We are not perfect, and it may be chaotic at times, but we show up for each other and encourage each other to succeed and celebrate each other’s accomplishments. My daughter came up with the best tag line for our family when she was 4 and learning to ride her bike without training wheels, “We are Team Fink and we commit, we don’t quit!” It has been our tag line ever since and a constant reminder to push through when things get hard. 

In November, OAR’s Board of Directors authorized funding for eight applied autism research studies in 2024. These new grants, totaling $297,569, bring OAR’s total research funding to more than $5 million since 2002. This article is the fourth of eight previews to be featured in The OARacle this year.

To address rising youth suicide rates and identify at-risk youth in need of intervention, suicide risk screening and management is recommended across pediatric care settings and mandated across inpatient and outpatient settings for youth with behavioral health challenges. Most youth and parents in the general population are supportive of suicide screening, though implementation is inconsistent.

For autistic youth, screening may occur less consistently and may be less acceptable to parents. A 2022 study found that 96% of the screening refusals in an outpatient clinic came from parents rather than patients with neurodevelopment disorders. Some parents believe screening is inappropriate, may be distressing or lead to ideas about suicide. Others declined because they believed their child lacked the ability to understand the screen, or they were not concerned that their child was at risk. Clinicians may also misperceive autistic patients as lower risk for suicidal thoughts and behaviors. They have little training and less confidence in screening and report lower use of common intervention strategies with autistic patients, according to a 2023 study.

Understanding these barriers to interventions is a critical first step to improving the identification and treatment of autistic youth at risk for suicide. In this OAR-funded, 18-month study, “Barriers and Facilitators to Suicide Risk Screening and Management for Autistic Youth,” principal investigator, Paige Cervantes, Ph.D., will evaluate obstacles to screening as well as the factors that facilitate screening. The goals of the study are to:  

  • Evaluate mental health clinicians’ attitudes and perspectives to understand how they either facilitate or reduce screenings and treatment for autistic youth.
  • Evaluate parent attitudes and perspectives to understand how they either facilitate or reduce screenings and treatment.
  • Develop educational materials to support parents and clinicians in addressing suicide risk with autistic youth and evaluate those materials for acceptability and utility.

Dr. Cervantes is an assistant professor in the Department of Psychiatry at Virginia Commonwealth University with educational experience in evidence-based assessment and treatment of autism and related neurodevelopmental disorders. She joined the Center for Implementation-Dissemination of Evidence-Based Practices Among States after completing her doctoral studies to gain expertise in implementation science. She has studied strategies to increase family engagement, build a trained workforce to advance community mental health care, and overcome barriers of evidence-based practice implementation.

Methodology

The study will take place in New York State to capitalize on existing partnerships and relationships. Dr. Cervantes was formerly a clinical assistant professor in the Department of Child and Adolescent Psychiatry at New York University Langone, and the other members of the research team are based there.

The research team will work with an advisory committee to develop and draft the clinician and caregiver surveys. The advisory committee will be made up of two autistic individuals and one parent of an autistic child. In addition to helping with drafting the survey, the committee will provide guidance at every step of the study.

The research team will recruit participants from state-funded community mental health clinics, specialty autism clinics, and parent organizations across the state to take the surveys. They will recruit 75 mental health clinicians, 50 non-specialized and 25 who specialize in providing care to autistic people, as well as 50 parents of autistic youth ages 7 to 17 to take surveys. Dr. Cervantes is focusing on mental health clinicians because care for suicidal thoughts and behaviors is only mandated for patients with behavioral health concerns, who are more likely to be treated by those clinicians.

Parents can participate even if their children have not experienced suicidal thoughts and behaviors. Suicide screening should occur for most autistic youth because:  

  • Autism is a risk factor for suicidal thoughts and behaviors. 
  • Autistic youth have high rates of mental health conditions. 
  • Attention to suicidal thoughts and behaviors is mandated for all patients with behavioral health concerns.  

Those factors make it important to understand how the attitudes of caregivers of youth with and without a history of suicidal thoughts and behaviors differ. The surveys, which will be distributed via email, will be open for six weeks, with biweekly reminders sent out during that period.

After the surveys close, the team will recruit 15 clinicians and 10 parents to participate in qualitative interviews. The clinician group will include clinicians who are not confident, somewhat confident, and confident screening autistic youth. The parent group will include a sampling of parents who are not, somewhat, or concerned about care for an autistic child who engages in suicidal thoughts and behaviors.

The research team will work with the advisory committee to develop educational materials addressing routine suicide risk screening for clinicians and caregivers. Those materials will be distributed to the parents and clinicians who participate in qualitative interviews so they can provide feedback. The research team will make revisions based on that feedback in consultation with the advisory committee and finalize the resources.

The educational materials for clinicians will be disseminated via a webinar and posted on the Evidence-Based Treatment Dissemination Center’s website. Dr. Cervantes and her team will also provide materials to clinicians to encourage use with their patients. The materials for caregivers will be disseminated through a webinar via the Regional Center for Autism Spectrum Disorders and available for download. Webinars will also be provided, and materials disseminated through the Autism Society of Central Virginia and Virginia Commonwealth University.

Evaluation

The research team will analyze survey data and interpret quantitative findings with the advisory committee. Both the clinician and the parent interviews will be developed based on survey data, focusing on areas where greater depth of information would be beneficial for building strategies to address barriers and promote implementation.

Practical Relevance

This study aims to contribute to a comprehensive understanding of the barriers and facilitators to the implementation of suicide risk screening and management. Dr. Cervantes will directly address findings related to modifiable attitudes and behaviors of clinicians and caregivers within the proposed study by developing clinician and caregiver resources since they serve in many cases as gatekeepers to potentially life-saving information.

Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.

After finding out that your child is autistic, you may have a sense of relief and empowerment because you knew they were different and now you know why and how to help. But what if your child has trouble accepting their own diagnosis? How can you help them move forward?

First, accept and listen.

Ensure that your child feels accepted and loved. Tell them directly how much you love them, what you appreciate about them, and how glad you are that they are your child. Include examples that are associated with autism, as well as others. Include stories that exemplify your child’s positive traits (e.g., “I love that you are so creative. Remember that amazing fantasy story you wrote all by yourself?”)

Because of neuronormativity, autistic children are often exposed to negative messages that can build up over time to make them feel inferior. Take some time to really hear what they have to say about how they are feeling. Keep in mind that they may share with you directly and indirectly (e.g., art and nonverbal communication). Before trying to convince them otherwise, make sure you understand their point of view. After all, they know themselves better than anyone else.

Second, help them understand what autism really is.

Autism is a wide spectrum that includes a variety of people. Our understanding of what autism includes is evolving. Generally, autistic people have ways of socializing that are different than neurotypical people. They might tend to talk more about one particular topic (e.g., infodumping). They might tend to be more direct. They might use a device or signs instead of spoken language. They might have some difficulty with making and keeping friends.

Autistic people also have ways of experiencing the world that are different than neurotypical people. For example, they might tend to experience sensory differences like sensitivity to loud noises, which in some cases is linked to enhanced perception as well. They might tend to be passionate about certain areas of interest. For example, Dan Aykroyd’s obsession with ghosts and police inspired him to create Ghostbusters. They might tend to cope by engaging in stimming, which are repetitive movements that people might use to soothe themselves, like rocking or pacing. Autistic people also tend to respond well to schedules and may have some trouble adjusting to change.

There are some ideas for helping your child understand autism on pages 5 to 9 of this free book from the Autistic Self-Advocacy Network, 13 Tips for Talking to Your Child About Their Autism, and Telling your child they are Autistic.

Third, try to find out what’s getting in the way of accepting the diagnosis.

Are they seeing it in a mostly negative light? Are they worried about stigma? Are they ashamed? Accepting an autism diagnosis generally takes time. In fact, some autistic people, like Dr. Lamar Hardwick, an autism advocate and pastor, have shared that it took them a couple of years to adjust to the diagnosis. In Sincerely, Your Autistic Child, Kayla Smith shares that she went through a phase of asking, “Why me?” and wishing she was not autistic, but as she learned more over time, she was able to accept herself as autistic. If your child does not want to refer to themselves as autistic right away, take your time and don’t push it.

For some children, it might help to use a metaphor. Diagnostic labels can sometimes be like boxes in limited sizes. None of them fit just right, but we choose the one that fits best. You can talk to your child about why we use diagnostic labels. They help us figure out strategies that might make life better for us based on what has worked for other people. They help us research how to make life better. And they help us find community. If your child is not ready to accept that they are autistic, they might be open to seeing themselves as neurodivergent or as having a different type of brain. They may not know exactly what box fits best, but they know that they don’t fit into the neurotypical box.

Fourth, introduce them to the neurodivergent community.

It is important to introduce your child to the neurodivergent community and the autistic community so that they can learn about autism from people who actually know what it is like to be autistic. Even if they are they are not ready to embrace the diagnosis yet, they are generally still welcome in neurodivergent spaces so they do not have to feel like imposters. For example, they could take an online class with Gabrielle Hughes, an autistic advocate, on Outschool like “What is Autism.” They can listen to autistic people tell their stories. They might find a book club for neurodivergent youth through their local library. They could be part of a friendship group for neurodivergent youth like the ones offered through Aspiring Youth.

Some autistic people have other disabilities, like intellectual disabilities. If your child has other disabilities, explore ways to be in community with other people with intellectual disabilities (e.g., through Special Olympics) and other types of disabilities (e.g., through your local Arc).

Also, make sure your home is neurodiversity-affirming by including books and media that celebrate people with different types of brains and different types of disabilities. Book ideas are available at That Au-some Book Club on Facebook  and booksforlittles.com. Maybe your child is into music, in which case you could share a song like this one. You can find other types of autism-affirming media in this guide for parents of autistic kids on pages 42-48. When you talk about different types of brains, pay attention to what you are saying both directly and indirectly. Make sure you are sending a message that having different types of brains is something to be celebrated. Try to expose them to neurodivergent people from different backgrounds. Talk to family members about doing the same.

Fifth, strategize together.

As you move forward with your child on this journey, take some time to figure out what you can agree on. Even if they do not think they are autistic, they might recognize the need for certain types of support. You can partner with them in figuring out how they need help, without having to use the label “autistic.” For example, maybe they would like support in developing conversational skills and would like to work with a speech language pathologist. Maybe they need help with sensory differences and would like to work with an occupational therapist to figure out how to make their environment better suited for them. Maybe there are things you can do together to make life easier (e.g., go shopping for noise-cancelling headphones). Some states may have foundations that offer support, such as Ben’s Fund in Washington State.

Sixth, consider further assessment.

Maybe some time has passed, and you have had a chance to expose your child to a variety of autistic experiences, and they still do not think they are autistic. What, then? Consider talking to a psychologist for support and investigate the possibility of an additional assessment. Ensure that your child’s input is considered in the assessment process.

Remember that navigating what autism means for your child specifically will be an ongoing journey. Gently guide your child to supports and services as needed along the way, but allow them to be in the driver’s seat in figuring out what neurodivergence means for them.  

Sara Woods, Ph.D. is a clinical psychologist at the University of Washington Autism Center and in private practice at Discover Psychology. She specializes in assessment across the lifespan with a focus on autism. Dr. Woods also offers training and consultation to psychologists, medical professionals, schools, families, and organizations on neurodiversity, intersectionality, autism, ADHD, and other types of neurodivergence. Dr. Woods is passionate about empowering parents to help their children develop positive identities.

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