Understanding the Puzzling Pieces of Autism

Autism Research Studies

Below is a list of Autism Research Studies the Autism Society of Iowa has been contacted about.  The Autism Society of Iowa does not endorse any student, study or college listed, but would like to make families aware of studies available, that they can participate in.


Arizona State University – Autism Treatment Effectiveness Survey

You are invited to evaluate the effectiveness of treatments for autism, including medications, nutritional supplements, diets, therapies, and education. Our goal is to learn which treatments are most effective for different symptoms (language, anxiety, sleep, GI, etc.). Survey results will be posted on our website for families and clinicians, and published in a scientific journal. Your participation is voluntary. The survey will take 15-45 minutes, depending on the number of treatments you wish to rate. For more information, go to http://autism.asu.edu


Auburn University- Therapeutic Relationship between Primary Caregivers of School-Aged Children with Autism Spectrum Disorder and Speech-Language Pathologists: An Electronic Survery

You are invited to participate in a research study to determine factors that contribute to the therapeutic relationship between primary caregivers of school-aged children with Autism Spectrum Disorder (ASD), in Kindergarten through 5th grade, and their child’s speech-language pathologist (SLP). This study is being conducted by Rachel L. Nokes, Master’s student in Communication Disorders at Auburn University, and Dr. Allison M. Plumb, Associate professor in the Auburn University Department of Communication Disorders. You were selected as a possible participant because of your membership in the Autism Society for the state in which you reside.

What will be involved if you participate? If you decide to participate in this research study, you will be asked to complete an online survey form that includes 59 questions. Your total time commitment will be approximately 20 minutes.

Are there any risks or discomforts associated with participation? There is always a risk of breach of confidentiality with surveys, but this possibility is being addressed by keeping all responses completely anonymous with no identifying information whatsoever being collected and using all reasonable and customary security measures. The data will be stored behind a secure firewall, and all security updates are applied in a timely fashion.

Are there any benefits to yourself or others? There is no direct benefit to you for participating in this study, but it is hoped that the results of this study will help to provide needed information on how the parent-clinician relationship is viewed and valued by parents, factors that guide a positive relationship, factors that negatively impact this relationship, and what needs/expectations these parents have. This study’s purpose seeks to provide professionals in speech-language pathology and related fields with valuable information and recommendations to incorporate into family-centered intervention for children with ASD.

Will you receive compensation for participating? You will receive no compensation for completing this survey; however, your participation would be greatly appreciated.

Are there any costs associated with participation? There are no costs associated with this survey, except for the few minutes of your time that it takes to complete the survey.

If you change your mind about participating, you can withdraw at any time by closing your browser window. Once you have submitted anonymous data, it cannot be withdrawn due to it being unidentifiable. Your decision about whether or not to participate or to stop participating will not jeopardize your future relations with Auburn University or the Department of Communication Disorders.

Any data obtained in connection with this study will remain anonymous. We will protect your privacy and the data you provide by NOT asking for any identifiable information. Information collected through your participation may be presented at state or national conferences and may be published in a professional journal.

If you have questions about this study, please contact Dr. Allison Plumb at amp0016@auburn.edu.

To begin the survey, click here.


Autism And Chemo Treatments Book Project

I have been getting chemo treatments for colon cancer and am autistic. I will be writing a mini-book in PDF about autism and cancer and those going through it when I am done when chemo rounds and am going into remission. If you know of anyone on the autism spectrum (autistic) and has gone through chemo treatments for cancer or is going through cancer and would like to be part of this project that I will be putting together later this year, would you have that person email me at scott.kramer@chattanoogaautismcenter.org? Thank you very much. That person’s name will be changed for confidentiality reasons, if requested. Thanks.

Scott Kramer, MSEd
Program Director/Founder, GCA Centre for Adult Autism (a program of the Chattanooga Autism Center)
Conference Coordinator, 2nd Annual Southeast Adult Autism Symposium, Chattanooga, TN
Board Member, Autism Society of Georgia
Self Advocate, Georgia Partners in Policymaking Graduate – 2016


Binghamton University (SUNY)

My name is Jennifer Vetter and I am a doctoral student in Clinical Psychology at Binghamton University (SUNY). Under the supervision of Dr. Jennifer Gillis Mattson and Dr. Raymond Romanczyk, I am conducting a research study to better understand how parents of children with ASD make decisions regarding their child’s treatment. This study has been approved by the Institutional Review Board (IRB). I am looking to recruit parents of children with ASD to take an online survey with an estimated completion time of approximately 30 minutes. Following survey completion, participants may choose to be entered into a drawing to win one of five $50 gift cards.
I believe that The Autism Society of Iowa is connected to many parents who may be interested in taking my survey. I am wondering if you would consider informing your parent members about the survey and sharing the link with them? I would be happy to send you some additional information or recruitment flyers. Thank you very much for your consideration and support of this research, I look forward to hearing from you!


Emerson College

  • Researchers at Emerson College and Boston University are conducting an online survey about how your child asks questions and uses pronouns. The survey has two parts which take no more than 20 minutes each to complete. You will receive an $8 Amazon gift card for your help.
  • To see if you qualify, please visit:www.tinyurl.com/HowKidsTalkSurvey.


Florida State University

Understanding the impact perceptions of severity has on parents of children with ASD aids professionals in finding meaningful coping mechanisms and interventions to benefit the individuals affected.

The purpose of this study is to examine the impact of positive psychology coping mechanisms, such as humor, optimism and spirituality on the stress levels of parents of children with Autism Spectrum Disorder.

The study will contribute to an awareness of the effects of using these coping mechanisms on the stress levels of parents of children with ASD. The results of this study can be used in combination with other feelings to promote the use of an increase awareness on positive psychology coping mechanisms.

In order to participate, you must be biological and step-parents over the age of 18, living with pre-adolescent children (ages four to twelve) with a self-reported diagnosis of ASD living in the United States. The survey will take around 20 minutes to complete and upon completion, you will have the opportunity to win a $25 VISA gift card. You will also be helping the researcher complete her dissertation for her Doctorate in Combined School and Counseling Psychology.

To complete survey, click here: Florida State Survey



  • Goally is a startup developing a “smart clock” to enhance your child’s ability to perform routine activities of daily living independently.  Goally is a stress-reducer for busy parents and a way of helping children develop a sense of mastery and control.
  • They are currently seeking beta testers to test a prototype Goally for 2 weeks (zero cost) and provide feedback.  Beta volunteers should:
  • Have a child with autism between the ages of 5 and 18
  • Be willing to provide feedback by phone and via the app during the test period
  • Go to https://goally.co/AS070 to sign up and learn more.


Iowa State University- Childhood and Wellbeing Puberty Study

Do you have BOY with a developmental or a mental health disability? Is he between the ages of 10 to 15 years old? Would you be willing to participate in an online survey on your experience and his experience going through puberty?

Click on this link for more information and to fill out the online survey: https://iastate.qualtrics.com/jfe/form/SV_9Y07JRhJ8spVR89

If you have any questions about this study, please directly contact jmphan@iastate.edu. Thank you!


Louisiana State University – ASD Caregiver Survey- Barriers and Treatments
I am a doctoral student at Louisiana State University. My colleagues and I are studying factors that affect caregivers’ experiences accessing diagnostic and treatment services for children with Autism Spectrum Disorder (ASD). We feel this is a particularly salient issue at present given recent changes in many major insurance policies as well as state and national initiatives surrounding ASD service provision.

Accordingly, we’ve developed an online survey for caregivers of children with ASD in order to better understand the process of accessing services, including factors affecting decision making in what services to pursue (evidence based vs. non-evidence based), and barriers experienced along the way. We hope you will consider sharing the information with primary caregivers who may be interested in helping us better understand how to improve the process of accessing effective services for ASD.

Here is the link for the anonymous survey, which has been approved by Louisiana State University’s Institutional Review Board. http://lsu.qualtrics.com/jfe/form/SV_3HKbJrmrneXVBCR

Lindsey Willis Williams, MS, CRC
Louisiana State University
Doctoral Student, Clinical Psychology
6000 University Ave # 450, West Des Moines, IA 50266
Phone:(515) 241-2000


Pearson- Bayley Scales of Infant and Toddler Development

Research Participants Needed! Earn $40-50!

Pearson, the nation’s leading provider of educational and clinical assessments, is updating the Bayley Scales of Infant and Toddler Development. The Bayley is used to measure multiple areas of development in infants and toddlers. But before this product can hit the market, Pearson must conduct field testing. To do this, we are looking for infants and toddlers to help us “test the test”.

We are in need of infants and toddlers between the ages of 16 months – 3.5 years who have been diagnosed with Autism Spectrum Disorder.

Time and location are flexible. Pearson will put you in touch with a qualified professional in your area with whom you can schedule a testing time and location that is convenient for you. Depending on your child’s age, testing sessions will last 60-90 minutes. Testing will take place through the end of 2018.
If interested, please complete the following form: Bayley Study Sign Up


University of Iowa Children’s Hospital Autism Center – Behavioral Treatment Using Telehealth for Children with Autism – Division of Pediatric Psychology, Center for Disabilities and Development, and Department of Psychiatry

A Treatment Research Opportunity  We are currently accepting referrals for participants in a research study on Behavioral Treatment Using Telehealth for Children with Autism. This study is funded by the National Institute of Mental Health. Scott Lindgren and David Wacker, faculty members in the Stead Family Department of Pediatrics at the University of Iowa, are the principal investigators for this study. Todd Kopelman, Kelly Pelzel, Matt O’Brien, Wendy Berg, and Linda Cooper-Brown are co-investigators at the University of Iowa. Nathan Call is the lead investigator at the Marcus Autism Center at the Children’s Hospital of Atlanta, and Dorothea Lerman is the lead investigator at the Center for Autism and Developmental Disabilities at the University of Houston – Clear Lake. Children in Iowa, Georgia, and Texas will participate in the study.

Purpose of the Research  The primary purpose of this research study is to evaluate the effectiveness of functional analysis and functional communication training, which are applied behavior analysis (ABA) procedures, in decreasing problem behaviors displayed by young children (ages 18 months to 6 years) with an autism spectrum disorder (ASD). All behavioral assessment and treatment procedures will be conducted through telehealth coaching for the parents using internet links to the family’s home. The study will compare whether different approaches to scoring and analyzing behavior observation data produces the same positive outcomes. One approach to treatment will include a more streamlined behavior assessment procedure and less extensive data scoring and coding of the behavior that is observed in weekly telehealth sessions. Half of the children will be assigned randomly to each of the two treatment groups. All children will receive active treatment; there is no control group that receives only a “placebo” treatment.

Study Procedures  We plan to include 50 children at each site over the course of this 4-year project. All children who participate in this research study will be displaying problem behaviors (e.g., tantrums, non-compliance, aggression, self-injurious behaviors) at the time of their inclusion. Each child from Iowa will be evaluated by research staff at the UI Children’s Hospital in Iowa City to confirm that they meet the diagnostic criteria for an ASD. As part of this evaluation, parents will be interviewed about their child and asked to complete checklists about their child’s behavior and about their own levels of stress and mood. Following confirmation of an ASD diagnosis, a behavioral evaluation (functional analysis) will be conducted in the child’s home. Parents will receive coaching on procedures via a video conference from a behavioral consultant located at the UI Children’s Hospital. A computer for teleconferencing and a connection to internet service will be provided for those families that do not already have these services available. Following the behavioral evaluation, we will then train parents to conduct a treatment called functional communication training (FCT), which has been reported in the scientific literature to be effective for many children. The behavioral evaluation and treatment will typically last for up to 6 months for each child. We will also check back with each family 6 months after treatment has been completed to see how the child and parents are doing and to complete a video observation probe. Families will be reimbursed for the cost of travel to attend the initial evaluation in Iowa City at the start of the study. There will be no costs to families in the study other than their time to participate.

Data Collection  We will make video recordings of all observation sessions. These recordings will be stored on a password-protected server and will be erased at the end of the project. We will also have parents complete several checklists during the study. All information collected as part of this research project will be kept confidential.

Making a Referral  If you are aware of any children who have an ASD, who are between 18 months and 6 years – 11 months of age, who engage in problem behaviors, who live in Iowa in an area that has access to high-speed internet, and whose family might be interested in the project, please have the family contact Todd Kopelman by phone or email at 319- 356-2491 or Todd-Kopelman@uiowa.edu. A copy of the Informed Consent Document, which provides additional details about the study, is available for review. Thank you for your interest in this study. Please do not hesitate to contact us with any questions or requests for more information.



Michigan State University- ImPACT Parent Online Training Study- Enrollment Age Extended to 8yo

Our friend and colleague at MSU, Brooke Ingersoll, has extended the enrollment age to age 8 (96 months) for her ImPACT parent online training study. If parents are open to being a research participant, this is a good opportunity for caregivers to learn techniques to improve their child’s engagement, language, play, and imitation skills, particularly if they are not in an area of the state where they have good access to local ABA/NDBI programming.

Please visit their website for details about the study – if parents are interested in participating, have them contact the lab coordinator so they can receive their own personal access code to the online site.

Northwestern University- Family Genetic Study of Language in Autism

This research study explores how key developmental, behavioral, and neural features may relate to skills in autism and be heritable in families. Our goal is to inform the causes of autism, and to understand how the genes involved in autism may play a role in language and other important skills.

STUDY OBJECTIVE: To understand the brain and gene basis of language and related skills in individuals
with autism and their family members
IMPORTANCE OF STUDY: Involves the use of exciting and innovative technologies for studying language and social features; Helps us further understand genes related to features of autism
WE ARE LOOKING FOR: Individuals with autism, their parents, and grandparents of any age; Individuals without autism
PARTICIPATION INCLUDES: Solving puzzles; Completing measures of brain activity; Talking about your friendships and the ways that you relate to other people; Providing a blood sample
COMPENSATION AND TIME: Participation involves either 1 or 2 visits; Participants will be compensated for their time

Researchers at the Neurodevelopmental Disabilities Lab at Northwestern University are conducting a research study funded by the NIH to explore how developmental, behavioral and neural features may relate to skills in autism and be heritable in families. In particular, the research team is looking for individuals who grew up in Iowa and think they may be related to someone with autism to participate in their study, such as parents and grandparents. This is because they study how performance on the Iowa Test of Basic Skills (ITBS) may relate to autism symptoms in the next generation. Through this work, they are learning more about how genes associated with autism are inherited through generations and may relate to different language and cognitive skills.

If you or someone you know may be interested in participating, please contact the team at 877-275-7187 or familystudy@northwesternedu. You can also visit their website http://ndl.northwestern.edu to learn more about their work!


University of Iowa – SPARK – Igniting Autism Research – Improving Lives  

If you or your child has a professional diagnosis of autism, the University of Iowa invites you to learn more about SPARK, a new online research study sponsored by the Simons Foundation Autism Research Initiative. The mission of SPARK is clear: speed up research and advance understanding of autism by creating the nation’s largest autism study. Joining SPARK is simple – register online and provide a DNA sample via a saliva collection kit in the comfort of your own home. Register in person at the University of Iowa Medical Research Center by contacting us at SPARK-study@uiowa.edu, or visiting www.SPARKforAutism.org/uiowa. Together, we can help spark a better future for all individuals and families affected by autism.



  • An inter-disciplinary team from the University of Iowa is undertaking a multi-faceted study of high-functioning young adults on the autism spectrum. Our focus is on their decision-making styles and outcomes as they face both routine everyday decisions and, because of their stage in life, life-altering decisions concerning education, employment, and personal relations.
  • In the current study we focus on comparisons between persons on the spectrum and their caregivers in terms of how persons on the spectrum perceive themselves and how others perceive them.
  • We are seeking both persons on the spectrum and their caregivers to complete an online survey for which they will be paid $20. If you reply by sending us your contact information, it merely means that you’ve given us permission to contact you later about the details of the study but without implying any commitment on your part.
  • Beyond the monetary compensation, we hope that you will see this as an opportunity to increase society’s understanding of what persons on the spectrum have to offer.
  • If you are interested and are at least 18 years old, please respond by indicating your name, your email address and whether you are on the spectrum or are a caretaker for someone on the spectrum. Please respond to the following e-mail address: TCOB-decisionmaking@uiowa.edu
  • If you are a person on the spectrum and are interested in participating, please share this notice with a caregiver. If both you and your caregiver participate, you will be asked to independently fill out separate surveys and each of you will be compensated.


University of South Dakota

Dear Valued Parents,
You are invited to participate in a research study! If a school psychologist, within the school setting, has ever evaluated your child, your opinions are sought regarding your child’s most recent psychological report.
The purpose of the study is to help make psychological reports more parent-friendly. Your feedback may help improve reports in the future for parents of children in special education. The survey you will complete has 16 questions about you and 35questions about your child’s report. Some of the questions include: “I understood ____% of the report.” and “What things were most helpful in your child’s report?” The survey will take approximately 10 minutes to complete, and you can complete the survey on any preferred device such as a computer, tablet, or mobile phone. If you choose to participate, you can enter into a drawing for one of eight $25 Visa gift cards. The survey is at the following link: 
Your responses will not be linked to you in any way and are totally anonymous. Therefore, we ask for you to be open and honest in your opinions. 
If you have any questions about participating in this study, please contact Whitney Burke at Whitney.Burke@coyotes.usd.edu or at (424) 218-6480.
Your participation in this study is greatly appreciated!


University of Southern Mississippi

  • Parents of children and adolescents ages 7-17 are invited to participate in a research study examining parenting strategies, parental stress levels, and their child’s behavioral presentation.
  • Parents are invited to participate if they have a child with:
    • Autism Spectrum Disorder (or Asperger’s Disorder or PDD-NOS)
    • Attention-Deficit/Hyperactivity Disorder
    • No developmental, behavioral, or emotional diagnoses
    • (Please note: If the target child has any siblings who live in the household, those siblings must not have been diagnosed with or suspected to have any developmental, behavioral, or emotiona diagnoses)
  • Parents will complete questionnaires via a secure, online website.
  • This study has received approval from The University of Southern Mississippi Institutional Review Board.
  • Please contact Elizabeth Fair at elizabeth.c.fair@usm.edu for more information or if you would like to participate.


University of New Brunswick – Quality of Life Autism Study

I am a researcher involved in a project on quality of life for parents and their children with ASD. The study is for parents of children with ASD aged 8-11 – looking at factors related to children’s quality of life.
The link to the survey is here: https://survey.psyc.unb.ca/qolconsent.aspx
We are on twitter: @autism_unb and @autism_QOLMandy Fulton, BA(Hons)
PhD Candidate in Clinical Psychology
The University of New Brunswick

Vanderbilt University- Residential and Respite Care Services Study

We are conducting a survey of families of adults with disabilities to explore the factors associated with different types of residential placements and respite care services for adults with disabilities.

The survey will take less than 30 minutes to complete. The survey is anonymous and voluntary and the responses are confidential. The responses will be helpful in determining issues and supports related to residential and respite care services. We will raffle ten $25 gift cards at the close of the survey for participants who complete the survey.

If you would like to complete the survey please follow the link: https://is.gd/residential_respite_survey

If you have any questions or concerns pertaining to the survey, please contact Maria P. Mello, M.Ed., BCBA at maria.p.mello@vanderbilt.edu or at (615) 669-2581.


Virginia Tech- Online Web-Based Autism Portal

A group of students at Virginia Tech are working on a project for us to design an online web-based portal for autism. The portal is intended to provide a means of support and credible/valid resources that will be useful to families, individuals, teachers, providers, and anyone else seeking information about autism-related issues. The students are seeking input as they design the portal.
If you are willing to provide input, please complete this survey (you may need to copy and paste into your browser): Autism Support Portal Questions
The survey is completely anonymous and will not be used for research purposes. It is only to collect ideas that can help with portal development.