research on autism community

Guidelines for conducting research studies with the autism community

Affiliations.

• 1 Division of Neuroscience and Experimental Psychology, School of biological Sciences, Faculty of Biology, Medicine and Health Sciences, The University of Manchester.
• 2 The University of Bolton.
• 3 Salfordautism.
• PMID: 32226635
• PMCID: PMC7099931

There has been growing awareness of the concern expressed by autism communities that the majority of research conducted does not reflect the priorities or needs of autistic people and their families. Further, many autistic people report that they feel unable to influence research and desire greater involvement in the research process. Our research generated practical guidelines for researchers to consider when conducting autism research, in order to increase involvement, collaboration and trust between researchers and the autism community. These guidelines are based on the output of focus groups and interview discussions with twenty-two autistic adults and eight parents of autistic children, conducted during a series of workshops carried out as a collaboration between the research network Autism@Manchester and Salfordautism, an autism support group led and run by autistic professionals. The guidelines are organised into four sections: (1) pre-study considerations, (2) recruitment of participants, (3) study visit considerations and (4) post-study considerations. These sections are structured to reflect the research pathway, to allow researchers to understand more easily how to incorporate the recommendations into their research. The recommendations promote effective communication and equal partnerships between the autism and research communities, so that the needs of participants pre-research, during and post- research are taken into account, and so that participants are supported to become involved in research at the level they choose. It is hoped that by implementing transparent and participatory approaches to their work, researchers might be able to reduce some of the dissatisfaction that members of the autism community feel towards research, leading to higher standards in autism research.

Keywords: Autism; Open Science; autism community; participatory research; public involvement.

Grants and funding

• WT_/Wellcome Trust/United Kingdom
• 105610/WT_/Wellcome Trust/United Kingdom

Advertisement

Application of the Community-based Participatory Research in Autism Spectrum Disorder: A Scoping Review

• Review Paper
• Published: 25 March 2024

Cite this article

• Jiayi Chen 1 ,
• Dazhi Yao 1 ,
• Shuanglan Lin 2 ,
• Shuai Yuan 3 ,
• Mian Wang 2 ,
• Hongmei Wu 1 &
• Quanzhi Zhang 1  

101 Accesses

Explore all metrics

The World Health Organization's (WHO) integrated approach to primary care differs from the traditional patient-centered approach to primary care, resulting in a gap that needs to be addressed. Recently, the Community-Based Participatory Research (CBPR) model has emerged as an alternative research approach to the traditional model, and has gained considerable attention in the field of autism research.The aim of this scoping review was to explore the pattern and effectiveness of CBPR in the ASD population. The findings suggest that CBPR is a promising and effective research model for skills enhancement and healthcare for autistic people. This review highlights the importance of using the CBPR model in ASD research which can help researchers build multi-partnerships with communities and other stakeholders to facilitate the design and implementation of health promotion programs.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price includes VAT (Russian Federation)

Instant access to the full article PDF.

Rent this article via DeepDyve

Institutional subscriptions

Similar content being viewed by others

A worked example of Braun and Clarke’s approach to reflexive thematic analysis

How to use and assess qualitative research methods

Doing Reflexive Thematic Analysis

Adler, R. R., et al. (2022). Community Based Participatory Research (CBPR): An Underutilized Approach to Address Surgical Disparities. Annals of Surgery, 275 , 496–499. https://doi.org/10.1097/sla.0000000000005329

Article   PubMed   Google Scholar  

Bess, K. D., Prilleltensky, I., Perkins, D. D., & Collins, L. V. (2009). Participatory organizational change in community-based health and human services: From tokenism to political engagement. American Journal of Community Psychology, 43 , 134–148. https://doi.org/10.1007/s10464-008-9222-8

Brian, J., et al. (2022). Effectiveness of a parent-mediated intervention for toddlers with autism spectrum disorder: Evidence from a large community implementation. Autism : The International Journal of Research and Practice, 26 , 1882–1897. https://doi.org/10.1177/13623613211068934

Brignell, A., Marraffa, C., Williams, K., & May, T. (2022). Memantine for autism spectrum disorder. The Cochrane database of systematic reviews, 8 , Cd013845. https://doi.org/10.1002/14651858.CD013845.pub2

Campbell, D.J.T., et al. (2021). Using a community-based participatory research approach to meaningfully engage those with lived experience of diabetes and homelessness. BMJ Open Diabetes Research & Care 9 . https://doi.org/10.1136/bmjdrc-2021-002154 .

Campbell, J. A., Yan, A., & Egede, L. E. (2020). Community-Based Participatory Research Interventions to Improve Diabetes Outcomes: A Systematic Review. The Diabetes Educator, 46 , 527–539. https://doi.org/10.1177/0145721720962969

Article   PubMed   PubMed Central   Google Scholar  

Chanchien Parajón, L., Hinshaw, J., Sanchez, V., Minkler, M., & Wallerstein, N. (2021). Practicing Hope: Enhancing Empowerment in Primary Health Care through Community-based Participatory Research. American Journal of Community Psychology, 67 , 297–311. https://doi.org/10.1002/ajcp.12526

Cohrs, A. C., & Leslie, D. L. (2017). Depression in Parents of Children Diagnosed with Autism Spectrum Disorder: A Claims-Based Analysis. Journal of Autism and Developmental Disorders, 47 , 1416–1422. https://doi.org/10.1007/s10803-017-3063-y

Cooper, K., Loades, M. E., & Russell, A. J. (2018). Adapting Psychological Therapies for Autism - Therapist Experience, Skills and Confidence. Research in Autism Spectrum Disorder, 45 , 43–50. https://doi.org/10.1016/j.rasd.2017.11.002

Article   Google Scholar  

Coughlin, S. S. (2016). Community-based participatory research studies on HIV/AIDS prevention, 2005-2014. Jacobs Journal of Community Medicine,  2(1), 019

Diener, M. L., Wright, C. A., Taylor, C., D’Astous, V., & Lasrich, L. (2020). Dual perspectives in autism spectrum disorders and employment: Toward a better fit in the workplace. Work (reading, Mass), 67 , 223–237. https://doi.org/10.3233/wor-203268

Ellen Selman, L., Fox, F., Aabe, N., Turner, K., Rai, D., & Redwood, S. (2018). “You are labelled by your children’s disability” - A community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom. Ethnicity & Health, 23 , 781–796. https://doi.org/10.1080/13557858.2017.1294663

Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X. H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism : The International Journal of Research and Practice, 13 , 375–387. https://doi.org/10.1177/1362361309105658

Farmer, N., et al. (2022). Going virtual during the COVID-19 pandemic: Adaptation of a mixed-methods dietary behavior study within a community-based participatory research study of African-American adults at risk for cardiovascular disease. BMC Medical Research Methodology, 22 , 330. https://doi.org/10.1186/s12874-022-01806-3

Fleming, P. J., et al. (2023). Antiracism and Community-Based Participatory Research: Synergies, Challenges, and Opportunities. American Journal of Public Health, 113 , 70–78. https://doi.org/10.2105/ajph.2022.307114

Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43 , 629–642. https://doi.org/10.1007/s10803-012-1604-y

Hirota, T., & King, B. H. (2023). Autism Spectrum Disorder: A Review. Jama, 329 , 157–168. https://doi.org/10.1001/jama.2022.23661

Jahan, S., Araf, K., Griffiths, M. D., Gozal, D., & Mamun, M. A. (2020). Depression and suicidal behaviors among Bangladeshi mothers of children with Autism Spectrum Disorder: A comparative study. Asian Journal of Psychiatry, 51 , 101994. https://doi.org/10.1016/j.ajp.2020.101994

Nichols, M., Magwood, G., Woodbury, M., Brown, K., Jenkins, C., & Owolabi, M. (2022). Crafting Community-Based Participatory Research Stroke Interventions. Stroke, 53 , 680–688. https://doi.org/10.1161/strokeaha.121.035306

Nicolaidis, C., et al. (2013). Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine, 28 , 761–769. https://doi.org/10.1007/s11606-012-2262-7

Nicolaidis, C., et al. (2016). The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers. Journal of General Internal Medicine, 31 , 1180–1189. https://doi.org/10.1007/s11606-016-3763-6

Nicolaidis, C., et al. (2021). Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults. Autism : The International Journal of Research and Practice, 25 , 786–799. https://doi.org/10.1177/1362361320967178

Ntalindwa, T., Nduwingoma, M., Karangwa, E., Rashid Soron, T., Uworwabayeho, A., & Uwineza, A. (2021). Development of a Mobile App to Improve Numeracy Skills of Children With Autism Spectrum Disorder: Participatory Design and Usability Study. JMIR Pediatrics and Parenting, 4 , e21471. https://doi.org/10.2196/21471

O’Malley, H.A.L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology , 19–32. https://doi.org/10.1080/1364557032000119616 .

Ou, J. J., et al. (2015). Employment and financial burden of families with preschool children diagnosed with autism spectrum disorders in urban China: Results from a descriptive study. BMC Psychiatry, 15 , 3. https://doi.org/10.1186/s12888-015-0382-4

Quetsch, L. B., Bradley, R. S., Theodorou, L., Newton, K., & McNeil, C. B. (2022). Community-based Agency Delivery of Parent-Child Interaction Therapy: Comparing Outcomes for Children with and Without Autism Spectrum Disorder and/or Developmental Delays. Journal of Autism and Developmental Disorders . https://doi.org/10.1007/s10803-022-05755-0

Raymaker, D. M. (2017). Reflections of a community-based participatory researcher from the intersection of disability advocacy, engineering, and the academy. Action Research (London), 15 , 258–275. https://doi.org/10.1177/1476750316636669

Raymaker, D. M., Kapp, S. K., McDonald, K. E., Weiner, M., Ashkenazy, E., & Nicolaidis, C. (2019). Development of the AASPIRE Web Accessibility Guidelines for Autistic Web Users. Autism in Adulthood : Challenges and Management, 1 , 146–157. https://doi.org/10.1089/aut.2018.0020

Raymaker, D. M., et al. (2020). “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout. Autism in Adulthood : Challenges and Management, 2 , 132–143. https://doi.org/10.1089/aut.2019.0079

Rivard, M., Morin, D., Coulombe, P., Morin, M., & Mello, C. (2022). The Diagnostic Period for Autism: Risk and Protective Factors for Family Quality of Life in Early Childhood. Journal of Autism and Developmental Disorders . https://doi.org/10.1007/s10803-022-05686-w

Roane, H. S., Fisher, W. W., & Carr, J. E. (2016). Applied Behavior Analysis as Treatment for Autism Spectrum Disorder. The Journal of Pediatrics, 175 , 27–32. https://doi.org/10.1016/j.jpeds.2016.04.023

Rodriguez Espinosa, P., & Verney, S. P. (2021). The Underutilization of Community-based Participatory Research in Psychology: A Systematic Review. American Journal of Community Psychology, 67 , 312–326. https://doi.org/10.1002/ajcp.12469

Roman-Urrestarazu, A., van Kessel, R., Allison, C., Matthews, F. E., Brayne, C., & Baron-Cohen, S. (2021). Association of Race/Ethnicity and Social Disadvantage With Autism Prevalence in 7 Million School Children in England. JAMA Pediatrics, 175 , e210054. https://doi.org/10.1001/jamapediatrics.2021.0054

Rosa, W. E., Elk, R., & Tucker, R. O. (2022). Community-based participatory research in palliative care: A social justice imperative. The Lancet Public Health, 7 , e104. https://doi.org/10.1016/s2468-2667(21)00305-4

Schiltz, H. K., et al. (2018). Examining the Links Between Challenging Behaviors in Youth with ASD and Parental Stress, Mental Health, and Involvement: Applying an Adaptation of the Family Stress Model to Families of Youth with ASD. Journal of Autism and Developmental Disorders, 48 , 1169–1180. https://doi.org/10.1007/s10803-017-3446-0

Schoen, S. A., et al. (2019). A systematic review of ayres sensory integration intervention for children with autism. Autism Research : Official Journal of the International Society for Autism Research, 12 , 6–19. https://doi.org/10.1002/aur.2046

Shtayermman, O., & Zhang, Y. (2022). Attachment Style and Mental Health Profiles of Parents Caring for a Child with Autism: Suicidal Ideation, Depression and Anxiety. Journal of Autism and Developmental Disorders, 52 , 4872–4882. https://doi.org/10.1007/s10803-021-05355-4

Smith, T., Iadarola, S., Mandell, D. S., Harwood, R., & Kasari, C. (2017). Community-Partnered Research With Urban School Districts That Serve Children With Autism Spectrum Disorder. Academic Pediatrics, 17 , 614–619. https://doi.org/10.1016/j.acap.2017.04.017

Springer, M. V., & Skolarus, L. E. (2019). Community-Based Participatory Research. Stroke, 50 , e48–e50. https://doi.org/10.1161/strokeaha.118.024241

Strang, J. F., et al. (2021). A Clinical Program for Transgender and Gender-Diverse Neurodiverse/Autistic Adolescents Developed through Community-Based Participatory Design. Journal of Clinical Child and Adolescent Psychology : The Official Journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division, 53 (50), 730–745. https://doi.org/10.1080/15374416.2020.1731817

Tibor, N., Farkas, J. M., & Kargas, Niko. (2020). Enhancing Resilience in Autistic Adults Using Community-based Participatory Research: A Novel HRD Intervention in Employment Service Provision. Advances in Developing Human Resources, 22 (4), 370–386. https://doi.org/10.1177/1523422320946293

Veneruso, M., et al. (2022). Short report. Cooking for autism: a pilot study of an innovative culinary laboratory for Italian adolescents and emerging adults with autism spectrum disorder. Research in Developmental Disabilities, 126 , 104259. https://doi.org/10.1016/j.ridd.2022.104259

Whitesell, N. R., Mousseau, A., Parker, M., Rasmus, S., & Allen, J. (2020). Promising Practices for Promoting Health Equity Through Rigorous Intervention Science with Indigenous Communities. Prevention Science : The Official Journal of the Society for Prevention Research, 21 , 5–12. https://doi.org/10.1007/s11121-018-0954-x

Zhu, R., Hardy, D., & Myers, T. (2022). Community Led Co-Design of a Social Networking Platform with Adolescents with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 52 , 38–51. https://doi.org/10.1007/s10803-021-04918-9

Download references

The research is supported by the Natural Science Foundation of Heilongjiang Province, China (LH2021H023).

Author information

Authors and affiliations.

School of Nursing, Harbin Medical University, Harbin, China

Jiayi Chen, Dazhi Yao, Hongmei Wu & Quanzhi Zhang

School of Nursing, The Hong Kong Polytechnic University, Hong Kong, China

Shuanglan Lin & Mian Wang

Psychiatric Department, Daqing Third Hospital, Daqing, China

You can also search for this author in PubMed   Google Scholar

Corresponding author

Correspondence to Quanzhi Zhang .

Ethics declarations

Conflict of interest.

All authors certify that they have no affiliations with or involvement in any organization or entity with any financial interest or non-financial interest in the subject matter or materials discussed in this manuscript.

Additional information

Publisher's note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. 

Jiayi Chen and Dazhi Yao are co-first authors. 

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Chen, J., Yao, D., Lin, S. et al. Application of the Community-based Participatory Research in Autism Spectrum Disorder: A Scoping Review. Rev J Autism Dev Disord (2024). https://doi.org/10.1007/s40489-024-00446-1

Download citation

Received : 22 May 2023

Accepted : 14 March 2024

Published : 25 March 2024

DOI : https://doi.org/10.1007/s40489-024-00446-1

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Community-Based Participatory Research
• Application
• Academic Partnerships
• Find a journal
• Publish with us
• Track your research

Latest News

Want to catch up on what’s been happening lately? Take a look at the latest news from The Autism Research Foundation.

18th Current Trends in Autism Conference

A big thank you to dan dugan, the autism research consortium 2016, appreciating autism can change your life, walking across america for autism, just like your favorite song.

About Our Foundation

The Autism Research Foundation is a 501(c)3 nonprofit organization founded by Dr. Margaret L. Bauman that responds to the changing needs of the autism community through neurobiology research, education, family life resources, and social inclusion programs. We are an internationally respected research foundation based in Boston. We believe individuals with autism contribute great talents to our communities, and they deserve the same opportunities at a great quality of life within these communities.

Inspired Volunteers

Motivated Professionals

People with Autism Served

Educated Citizens

Your Donations Help Us To

Advance our understanding

Multidisciplinary collaboration is key to learning about a complex disorder like autism.

Develop effective interventions

Long-term research will create strategies that both maximize and minimize symptoms of ASDs.

Produce educational resources

Accessible and affordable information via our website, clinic and research sites & annual conferences.

Host social inclusion programs

Free activities led by our trained volunteers in sports, art and employment.

I became a member of The Autism Research Foundation to help create equality for those who have autism. Autism is a widely misunderstood disorder and by spreading awareness and knowledge, I am confident we can change lives everywhere. Currently, I am preparing for a career in Speech-Language Pathology, so that I can help get that conversation started both in and outside of the clinic. Grace B. Grace B.

"Inclusion is so important to our kids. I think that people assume if you have a disability, of any kind, you do not have anything to offer the world. Our kids have so much to offer... I applaud you for getting kids involved and including them in something that they may otherwise not be a part of." Megan's Mom, Rhode Island

We wanted to use our life's goal of walking across the country to help kids with special needs cross their own boundaries through the Athletes 4 Autism program, so we created our own donation page to share our story with friends in one easy-to-access place. They follow our progress, share our story, and encourage others to do the same all through social media. Donations have since tripled, meaning we are helping Athletes 4 Autism 3x more than we ever thought we would. Amazing! Dan and Mary Beth Reardon Dan and Mary Beth Reardon, Walking Across America for Autism

Your Internet Explorer 11 browser is not supported by this site. Please upgrade to a recent browser for the best experience.

Research work

At the National Autistic Society, we want to support research which respectfully and ethically centres autistic people and their experiences, goals, and needs, in alignment with our Moonshot vision and strategy .  We partner with researchers to: 

• Ensure their work addresses the priorities identified by autistic people; 
• Encourage meaningful co-production;  
• Provide guidance around supporting participants appropriately.  

We can utilise our unique positioning and networks to help advertise for participants, with a reach of over 30,000 autistic people. We are also well-placed to support dissemination of findings, with long established relationships with local and national government, and other key decision-makers.  

We work with autistic people, families, university academics and other autism charities and organisations to support and promote research that is good quality, and reflects people’s real experiences.

Who can we work with? 

We want to support quality research which addresses issues that are important to autistic people and their families, and aims to make a positive impact to their lives.  

We have limited capacity and therefore can’t support every enquiry we receive. If your research meets the following criteria we may be able to help: 

• Does the topic align with key priorities for autistic people set out in our Moonshot vision ? 
• Is your research PhD level or above? 
• Does your research involve meaningful autistic involvement? 
• Will autistic participants be compensated and supported appropriately? 

Read on if your project ticks the above boxes. If your study doesn’t meet any of the above – watch this space as we add useful tools and resources to this webpage, for you to consider when shaping your research.  

How can we help? 

We support quality research in various ways, and to different levels. The two main paths are as follows: 

Partnership  

We can provide full partnership - working with you from bid development stage through to dissemination. Typically, our input focusses on Personal and Public Involvement (PPI) including: 

• Co-writing and proofing bid application 
• Recruiting and facilitating a steering group/advisory panel of autistic people to help guide the project throughout its duration 
• Assisting with recruitment of autistic people to research/evaluation roles within the project 
• Attending project group meetings 
• Consulting on / co-producing documentation/materials 
• Advertising for study participants through our online networks and branches 
• Disseminating and promoting the findings through our public platforms and highly specialist policy and media teams.   

This is a bespoke service, and costings to be factored into your funding bid would depend on the enquiry.  

If you would like to discuss partnership, please complete this form and email it to [email protected]

Advertising for participants  

If your study is established and you are recruiting for participants, we may be able to advertise on your behalf through our online networks and branches. Please note we cannot accept all requests to advertise. Your study must meet the requirements outlined above, and you must have ethical approval for us to consider providing support.  

If you would like to request help advertising for participants, please complete this form and email it to [email protected] along with proof of ethical approval and your poster.  

Have a different enquiry?  

If you have an enquiry that isn’t covered above, you can still get in touch. We also partner with other charities and non-research organisations. Please email [email protected] giving as much information as you can.  

What happens next? 

Once we receive your enquiry and completed form with supporting evidence, we will begin our internal review process. We will then contact you to discuss next steps.  

Are you an autistic individual interested in becoming involved in research? 

By contributing to quality research, you can help to shape the future for autistic people and their families.  

We regularly recruit advisory panels/steering groups for research projects. These are usually autistic people with experience of the specific research topic (for example co-occurring mental health conditions, or sleep difficulties). These are paid opportunities and panellists are given guidance and support through the process. If you are interested in being considered for these opportunities please email [email protected] .  

If you are interested in being a research participant (for example filling out an online survey or attending a face-to-face interview), keep an eye on our community forum where we occasionally post opportunities.    

Who are we working with?

Audit 50 

Led by University College London, this study focusses on the experiences of older autistic people, particularly around diagnosis. Findings suggest a substantial number of autistic adults in England are undiagnosed, compared to children. The research team are calling for better access to diagnostic services for adults, improved post-diagnosis support, and greater societal understanding and acceptance of autism.  

BEAMS – ID 

Led by Warwick University, this study examines the effectiveness of an intervention to reduce anxiety in autistic people with learning disabilities. The research group has adapted a talking therapy for use by autistic people with learning disabilities, and completed a feasibility study, comparing outcomes to treatment as usual (TAU).  

Autism in affinity spaces: Interest-driven social media practices during the transition to adulthood 

Led by Queen Mary University of London, this study explores autistic young people’s experiences of social media. It will focus on which social media resources are available to them, how these resources are used to interact with others, and to engage in interests.  

Youth Justice  

Led by University of Kent, this project focusses on the experiences of autistic people within the Youth Justice System. The project highlights a lack of understanding and support for autistic young people within the system.  

BRIDGING (Breakthrough interview extended reality training towards reducing the autism employment gap) 

Led by University of the West of England, this project aims to help autistic people in the UK to obtain and sustain a job. Virtual scenarios for Virtual Reality (VR) headsets will be created, to practise having job interviews and experience the first days at a new job. This will help autistic jobseekers to know what to expect and be less anxious, as part of a training package. It will also help employers to understand what adjustments they can make for autistic people. 

IHOAP (Tailored Healthcare Adjustments for older autistic people: Development and initial evaluation of an intervention to improve healthcare) 

Led by Northumberland Tyne and Wear NHS Trust, this study focusses on the experiences of older autistic people in relation to healthcare. It tests the feasibility of an intervention to help older autistic people get better access to healthcare, exploring tailored adjustments to improve the effectiveness of care.

Cookies on this site

Our site uses cookies for key functions and to give you the best experience. Use cookie settings to control which cookies are allowed or click on Allow Optional Cookies to allow all cookies. For more detailed information please see our cookie policy .

Please wait while we check your current settings

• Português Br
• Journalist Pass

Understanding autism: The path to diagnosis, awareness and support

Mayo Clinic Staff

Share this:

Diagnosing a person with autism spectrum disorder can be challenging. It's a medical condition that no blood test, brain scan or objective test can pinpoint. And because of each person's distinctive pattern of symptoms, it can be hard to determine its severity.

As people gain familiarity with autism, however, they are becoming more open to discussing the diagnosis and seeking treatment. Society is also becoming more motivated to learn about neurodivergent conditions, including autism.

What is autism spectrum disorder?

Autism spectrum disorder  is a condition related to brain development that affects how a person perceives and socializes with others, causing problems in social interaction and communication. It includes conditions that previously were considered separate, including autism, Asperger's syndrome, childhood disintegrative disorder and an unspecified form of pervasive developmental disorder.

Autism affects children and adults in three areas: communication, social interaction and behaviors.  Children with autism spectrum disorder  may struggle with recognizing their emotions and may feel them more intensely. Regulating their anger and frustration can be difficult and lead to intense bursts of emotions. Children with autism also have higher rates of anxiety and depression.

Each child with autism spectrum disorder is likely to have a distinctive pattern of behavior and level of severity. A healthcare professional will generally describe the severity of the condition based on the person's level of impairments and how those affect their ability to function.

A child or adult with autism spectrum disorder may have problems with social interaction and communication skills, including any of these signs:

• Can't start a conversation, keep one going or can only start one to make requests or label items.
• Doesn't appear to understand simple questions or directions.
• Doesn't express emotions or feelings and appears unaware of others' feelings.
• Doesn't speak or has delayed speech.
• Fails to respond to their name or appears not to hear you sometimes.
• Has difficulty recognizing nonverbal cues, such as interpreting other people's facial expressions, body postures or tone of voice.
• Has poor eye contact and lacks facial expression.
• Inappropriately approaches a social interaction by being passive, aggressive or disruptive.
• Prefers playing alone.
• Repeats words or phrases verbatim but doesn't understand how to use them.

Awareness of autism behaviors

According to the  Centers for Disease Control and Prevention (CDC) , the latest research from 2023 shows that 1 in 36 children was diagnosed with autism. This is an increase from 1 in 44 children just  two years ago .

Children tend to become more aware of their diagnosis around puberty. Kids recognize their differences from their peers and notice their struggle to fit in. They might notice they're not being invited to participate in certain activities or being accepted in the same way as many of their peers. Social interactions become more crucial for young people in middle and high school, which can be stressful for someone on the autism spectrum.

Parents may notice symptoms early on when they see how their child's behaviors, communication and social interactions differ from their peer group. It can be challenging for parents to accept that their child is different from other children. Parents may feel guilty and responsible, even though this developmental condition has no known cause.

Living with autism spectrum disorder

As the number of people living with autism spectrum disorder increases, it's critical to seek out educational opportunities that can help with understanding autism spectrum disorder. What are the strengths and disadvantages of the child? How can that knowledge be used to strengthen the skills of a child with autism? Answering these questions can help identify specific interventions to teach skills relevant to the child.

For example, if a child struggles with regulating emotions, this can be addressed through  treatment  to help them gain more control over their emotions and behaviors.

No cure exists for autism spectrum disorder, and there's no one-size-fits-all treatment. The goal of treatment is to maximize your child's ability to function by reducing their autism spectrum disorder symptoms and  supporting their development and learning . Early intervention during the preschool years is key.

Treatment options may include:

• Behavior and communication therapies
• Educational therapies
• Family therapies
• Medications

When you have a child or loved one with autism, the chance of them having anxiety or depression is increased. Evaluating and treating these symptoms can improve their level of functioning and their overall mental health.

One of the most critical things parents, friends or classmates of someone diagnosed with autism spectrum disorder can do is educate yourself about it while recognizing their strengths.

You can develop increased compassion for your loved ones, classmates, friends and colleagues by recognizing and understanding more about the condition. While you can't eliminate a child's autism or wait for them to outgrow it, you can minimize some of its symptoms and improve quality of life.

Janice Schreier  is a child and adolescent clinical therapist in  Psychiatry & Psychology  in  La Crosse , Wisconsin.

This article first appeared on the Mayo Clinic Health System blog .

• Is emotional eating sabotaging your weight-loss efforts? Mayo Clinic Q&A: Using radiation therapy to treat brain tumors

Related Articles

Autism symptoms sometimes improve amid fever, so a research team will study how to make that a therapy

With support from The Marcus Foundation, an MIT neuroscientist and a Harvard Medical School immunologist will study the “fever effect” in an effort to devise therapies that mimic its beneficial effects.

Scientists are catching up to what parents and other caregivers have been reporting for many years: When some people with autism spectrum disorders experience an infection that sparks a fever, their autism-related symptoms seem to improve.

With a pair of new grants from The Marcus Foundation, scientists at MIT and Harvard Medical School hope to explain how this happens in an effort to eventually develop therapies that mimic the “fever effect” to similarly improve symptoms.

“Although it isn’t actually triggered by the fever, per se, the ‘fever effect’ is real, and it provides us with an opportunity to develop therapies to mitigate symptoms of autism spectrum disorders,” said neuroscientist Gloria Choi , associate professor in The Picower Institute for Learning and Memory and the Department of Brain and Cognitive Sciences at MIT.

Choi will collaborate on the project with Jun Huh, associate professor of immunology at Harvard Medical School. Together the grants to the two institutions provide $2.1 million over three years.

“To the best of my knowledge, the ‘fever effect’ is perhaps the only natural phenomenon in which developmentally determined autism symptoms improve significantly, albeit temporarily,” Huh said. “Our goal is to learn how and why this happens at the levels of cells and molecules, to identify immunological drivers, and produce persistent effects that benefit a broad group of individuals with autism.”

The Marcus Foundation has been involved in autism work for over 30 years, helping to develop the field and addressing everything from awareness to treatment to new diagnostic devices. 

“I have long been interested in novel approaches to treating and lessening autism symptoms, and Drs. Choi and Huh have honed in on a bold theory,” said Bernie Marcus, founder and chairman of The Marcus Foundation. “It is my hope that this Marcus Foundation Medical Research Award helps their theory come to fruition and ultimately helps improve the lives of children with autism and their families.”

Brain-immune interplay

For a decade, Huh and Choi have been investigating the connection between infection and autism. Their studies suggest that the beneficial effects associated with fever may arise from molecular changes in the immune system during infection, rather than on the elevation of body temperature, per se.

Their work in mice has shown that maternal infection during pregnancy, modulated by the composition of the mother’s microbiome, can lead to neurodevelopmental abnormalities in the offspring that result in autism-like symptoms, such as impaired sociability. Huh’s and Choi’s labs have traced the effect to elevated maternal levels of a type of immune-signaling molecule called IL-17a, which acts on receptors in brain cells of the developing fetus, leading to hyperactivity in a region of the brain’s cortex called S1DZ. In another study , they’ve shown how maternal infection appears to prime offspring to produce more IL-17a during infection later in life.

Building on these studies, a 2020 paper clarified the fever effect in the setting of autism.  This research showed that mice that developed autism symptoms as a result of maternal infection while in utero would exhibit improvements in their sociability when they had infections — a finding that mirrored observations in people. The scientists discovered that this effect depended on over-expression of IL-17a, which in this context appeared to calm affected brain circuits. When the scientists administered IL-17a directly to the brains of mice with autism-like symptoms whose mothers had not been infected during pregnancy, the treatment still produced improvements in symptoms.

New studies and samples

This work suggested that mimicking the “fever effect” by giving extra IL-17a could produce similar therapeutic effects for multiple autism-spectrum disorders, with different underlying causes. But the research also left wide-open questions that must be answered before any clinically viable therapy could be developed. How exactly does IL-17a lead to symptom relief and behavior change in the mice? Does the fever effect work in the same way in people?

In the new project, Choi and Huh hope to answer those questions in detail.

“By learning the science behind the fever effect and knowing the mechanism behind the improvement in symptoms, we can have enough knowledge to be able to mimic it, even in individuals who don’t naturally experience the fever effect,” Choi said.

Choi and Huh will continue their work in mice seeking to uncover the sequence of molecular, cellular and neural circuit effects triggered by IL-17a and similar molecules that lead to improved sociability and reduction in repetitive behaviors. They will also dig deeper into why immune cells in mice exposed to maternal infection become primed to produce IL-17a.

To study the fever effect in people, Choi and Huh plan to establish a “biobank” of samples from volunteers with autism who do or don’t experience symptoms associated with fever, as well as comparable volunteers without autism. The scientists will measure, catalogue and compare these immune system molecules and cellular responses in blood plasma and stool to determine the biological and clinical markers of the fever effect.

If the research reveals distinct cellular and molecular features of the immune response among people who experience improvements with fever, the researchers could be able to harness these insights into a therapy that mimics the benefits of fever without inducing actual fever. Detailing how the immune response acts in the brain would inform how the therapy should be crafted to produce similar effects.

"We are enormously grateful and excited to have this opportunity," Huh said. "We hope our work will 'kick up some dust' and make the first step toward discovering the underlying causes of fever responses. Perhaps, one day in the future, novel therapies inspired by our work will help transform the lives of many families and their children with ASD."

Related Articles

New grant to study possibility of an immunotherapy for autism.

Immune & Inflamed

Building a bridge between neuroscience and immunology

To the clinic!

Study shows heightened sensitivity to PTSD in autism

For the first time, researchers from the Queensland Brain Institute have proven that a mild stress is enough to trigger post-traumatic stress disorder (PTSD) in mouse models of autism spectrum disorder (ASD).

Dr Shaam Al Abed and Dr Nathalie Dehorter have demonstrated that the two disorders share a reciprocal relationship, identifying a predisposition to PTSD in ASD, and discovering that core autism traits are worsened when traumatic memories are formed.

While recent studies in humans have highlighted the co-occurrence of ASD and PTSD, the link between the disorders is often overlooked and remains poorly understood.

"We set out to determine the occurrence of traumatic stress in ASD, and to understand the neurobiological mechanisms underlying the reported predisposition to PTSD," said Dr Al Abed.

ASD and PTSD share common features, including impaired emotional regulation, altered explicit memory, and difficulties with fear conditioning.

"We demonstrated in four mouse models of ASD that a single mild stress can form a traumatic memory."

"In a control population, on the other hand, PTSD is triggered by extreme stress."

"We wanted to understand this unique perception of stress in ASD that leads to the formation of PTSD."

The prefrontal cortex is a highly specialised area in the front part of the brain that plays a crucial role in social cognition and behaviour.

According to Dr Dehorter, dysfunction in the prefrontal cortex has been linked to both disorders.

"We identified specific cortical circuit alterations that trigger the switch between the formation of a normal memory and a PTSD-like memory during stress," said Dr Dehorter.

The prefrontal cortex contains specialised cells called interneurons, which are crucial for adapted fear memorisation and normal sensory function and play a key role in stress-related disorders.

The formation of PTSD-like memories is triggered by over activation of the prefrontal cortex that is present in ASD and throws out the balance of these cortical circuits.

The capabilities of interneurons to respond to stress is altered in ASD. This alteration worsens autism traits following the formation of a traumatic memory.

"We didn't anticipate that forming a traumatic memory would aggravate the social and behavioural difficulties in ASD."

"What is really promising is once the traumatic memories are successfully recontextualised using behavioural therapy, the ASD traits that were worsened following the stress, are dramatically improved."

This discovery validates the assumption that the two disorders are closely linked and could change the way clinicians treat their patients.

An awareness of the PTSD predisposition and the success of behavioural therapy in treating it could shape the approach to managing stress in ASD.

This paper was published in iScience .

• Mental Health Research
• Psychology Research
• Nervous System
• Accident and Trauma
• Post-traumatic stress disorder
• Psychiatric service dog
• Autistic spectrum
• Mental illness
• Obsessive-compulsive disorder
• Stress (medicine)

Story Source:

Materials provided by University of Queensland . Note: Content may be edited for style and length.

Journal Reference :

• Alice Shaam Al Abed, Tiarne Vickie Allen, Noorya Yasmin Ahmed, Azza Sellami, Yovina Sontani, Elise Caitlin Rawlinson, Aline Marighetto, Aline Desmedt, Nathalie Dehorter. Parvalbumin interneuron activity in autism underlies susceptibility to PTSD-like memory formation . iScience , 2024; 27 (5): 109747 DOI: 10.1016/j.isci.2024.109747

Cite This Page :

Explore More

• Controlling Shape-Shifting Soft Robots
• Brain Flexibility for a Complex World
• ONe Nova to Rule Them All
• AI Systems Are Skilled at Manipulating Humans
• Planet Glows With Molten Lava
• A Fragment of Human Brain, Mapped
• Symbiosis Solves Long-Standing Marine Mystery
• Surprising Common Ideas in Environmental ...
• 2D All-Organic Perovskites: 2D Electronics
• Generative AI That Imitates Human Motion

Trending Topics

Strange & offbeat.

• UNC Chapel Hill

Judson, Durham Earn Autism Research Center Pilot Awards

May 8, 2024

The UNC Autism Research Center awarded two $12,500 Kelley Altman Greer Family Autism Research Fund Pilot Awards. The goal of this funding is to stimulate multidisciplinary collaborations in autism spectrum disorder among UNC faculty and incentivize researchers to generate pilot data for use in grants to the NIH and other external agencies.

One of the awards, titled, “Blood-brain barrier disruption to improve gene therapy delivery for treating ASD” went to Matthew Judson, PhD, an assistant professor in the UNC Department of Cell Biology and Physiology, and Phillip Durham, PhD, an assistant professor in the UNC-NCSU Joint Department of Biomedical Engineering. Their project will study the use of acoustic waves to non-invasively enhance gene therapy viral vector delivery. This project combines the gene therapy expertise of Judson with the acoustic engineering expertise of  Durham to optimize acoustic approaches for delivering gene therapies to the brain. These non-invasive delivery methods offer a promising opportunity for treating genetic forms of ASD.

The other award, titled, “Empowering Culturally Diverse Families in Early Autism Intervention for Toddlers,” went to Jessica Amsbary, PhD, a Program Coordinator in the School of Education and a Technical Assistance Specialist at the FPG Child Development Institute, and Jessica Kinard, PhD, CCC-SLP,  a bilingual speech-language pathologist at the Carolina Institute for Developmental Disabilities. For this project, families from English- and Spanish-speaking cultures will participate in 2-3 focus groups (at least one in Spanish) to talk about their experiences with Early intervention services, including their priorities and needs when teaming up with Early intervention providers. The researchers will then use this information to develop an online learning module designed to support families in Early intervention. The research team will eventually seek funding to carry out a larger study to test whether the learning module for families, along with a learning module for Early intervention providers, helps children and families reach better outcomes.

Filed Under:

More from Newsroom

• Newsworthy from the School of Medicine, Week of May 3 – May 9
• Researchers Engineer Yeast to Deliver Drugs, Reduce Inflammation for Possible Inflammatory Bowel Disease Treatment
• Newsworthy from the School of Medicine, Week of April 26 – May 2

• Alzheimer's disease & dementia
• Arthritis & Rheumatism
• Attention deficit disorders
• Autism spectrum disorders
• Biomedical technology
• Diseases, Conditions, Syndromes
• Endocrinology & Metabolism
• Gastroenterology
• Gerontology & Geriatrics
• Health informatics
• Inflammatory disorders
• Medical economics
• Medical research
• Medications
• Neuroscience
• Obstetrics & gynaecology
• Oncology & Cancer
• Ophthalmology
• Overweight & Obesity
• Parkinson's & Movement disorders
• Psychology & Psychiatry
• Radiology & Imaging
• Sleep disorders
• Sports medicine & Kinesiology
• Vaccination
• Breast cancer
• Cardiovascular disease
• Chronic obstructive pulmonary disease
• Colon cancer
• Coronary artery disease
• Heart attack
• Heart disease
• High blood pressure
• Kidney disease
• Lung cancer
• Multiple sclerosis
• Myocardial infarction
• Ovarian cancer
• Post traumatic stress disorder
• Rheumatoid arthritis
• Schizophrenia
• Skin cancer
• Type 2 diabetes
• Full List »

share this!

May 9, 2024

This article has been reviewed according to Science X's editorial process and policies . Editors have highlighted the following attributes while ensuring the content's credibility:

fact-checked

peer-reviewed publication

trusted source

Study identifies primary cause of sensory hypersensitivity in a mouse model of autism spectrum disorder

by Institute for Basic Science

A research team led by Director Kim Eunjoon of the Center for Synaptic Brain Dysfunctions and Director Kim Seong-Gi of the Center for Neuroscience Imaging Research within the Institute for Basic Science (IBS) has identified the primary cause of sensory hypersensitivity related to autism spectrum disorders (ASD).

Autism affects approximately 1 in 36 individuals and is marked by significant challenges in social interaction and communication. Around 90% of autism patients also suffer from abnormal sensory hypersensitivity that deeply affects their daily functioning.

This hypersensitivity results in exaggerated or dampened responses to common sensory stimuli such as sound, light, and touch, which leads to considerable stress and further social withdrawal. The precise brain region responsible for this sensory dysfunction is unknown, which hinders treatment efforts.

The IBS researchers studied an ASD mouse model with a mutation in the Grin2b gene, which encodes the GluN2B subunit of NMDA receptors. NMDA receptors, a type of glutamate receptor in the brain, have garnered attention in the context of autism due to their crucial role in synaptic transmission and neural plasticity.

It was hypothesized that the Grin2b gene mutation in mice would induce ASD-like phenotypes, including sensory abnormalities, and that certain brain mechanisms may play important roles.

The researchers monitored neural activity and functional connectivity in the brains of these mice using activity-dependent markers and functional magnetic resonance imaging (fMRI). In these mice, the researchers discovered increased neuronal activity in the anterior cingulate cortex (ACC).

The ACC is one of the higher-order cortical regions that have been extensively studied for cognitive and emotional brain functions, but have been understudied for brain disease-related sensory abnormalities.

Interestingly, when the hyperactivity of ACC neurons was inhibited using chemogenetic methods, sensory hypersensitivity were normalized, indicating the pivotal role of ACC hyperactivity in sensory hypersensitivity associated with autism.

The work is published in the journal Molecular Psychiatry .

Director Kim Eunjoon states, "This new research demonstrates the involvement of the anterior cingulate cortex (ACC), which has been known for its deep association with cognitive and social functions, in sensory hypersensitivity in autism."

The hyperactivity of the ACC was also associated with the enhanced functional connectivity between the ACC and other brain areas. It is believed both hyperactivity and the hyperconnectivity of the ACC with various other brain regions are involved with sensory hypersensitivity in Grin2b-mutant mice.

Director Kim Seong-Gi states, "Past studies attributed peripheral neurons or primary cortical areas to be important for ASD-related sensory hypersensitivity . These studies often only focused on the activity of a single brain region. In contrast, our study investigates not only the activity of ACC but also the brain-wide hyperconnectivity between the ACC and various cortical/subcortical brain regions, which gives us a more complete picture of the brain."

The researchers plan to study the detailed mechanisms underlying the increased excitatory synaptic activity and neuronal hyperconnectivity. They suspect that the lack of Grin2b expression may inhibit the normal process of weakening and pruning synapses that are less active so that relatively more active synapses can participate in refining neural circuits in an activity-dependent manner. Other areas of research interest is studying the role of ACC in other mouse models of ASD.

Explore further

Feedback to editors

Visual experiences unique to early infancy provide building blocks of human vision, study finds

7 hours ago

Study points to personalized treatment opportunities for glioblastoma

8 hours ago

Research team introduces new tool to boost battle against childhood undernutrition

How herpes hijacks a ride into cells

9 hours ago

How the brain is flexible enough for a complex world, without being thrown into chaos

Researchers create AI model to understand how brain activity relates to illness

Study reveals need to review temperature control measures in hospitals to manage Legionella

'What was that?' How brains convert sounds to actions

10 hours ago

ERR-gamma 'trains' stomach stem cells to become acid-producing cells

Scientists make progress on new charged particle therapy for cancer

11 hours ago

Related Stories

Boosting certain brain cells diminishes hypersensitivity in Fragile X mice

Jul 13, 2023

Uncovering the connections between autism, sensory hypersensitivity

Feb 29, 2024

Researchers use brain imaging to demonstrate weaker neural suppression for those with autism

May 29, 2020

Neuronal abnormalities in autism-associated canine model carry Shank3 mutations

Feb 7, 2024

New study may explain why people with autism are often highly sensitive to light and noise

Mar 2, 2020

Sensory signals are integrated differently, underrepresented by neurons in autism

Feb 16, 2023

Recommended for you

Autism's missing microbes may influence social behavior by protecting the gut

Psychological therapy shows promise in improving quality of life for people living with motor neuron disease

Unobtrusive, implantable device could deepen our understanding of behavioral responses

Let us know if there is a problem with our content.

Use this form if you have come across a typo, inaccuracy or would like to send an edit request for the content on this page. For general inquiries, please use our contact form . For general feedback, use the public comments section below (please adhere to guidelines ).

Please select the most appropriate category to facilitate processing of your request

Thank you for taking time to provide your feedback to the editors.

Your feedback is important to us. However, we do not guarantee individual replies due to the high volume of messages.

E-mail the story

Your email address is used only to let the recipient know who sent the email. Neither your address nor the recipient's address will be used for any other purpose. The information you enter will appear in your e-mail message and is not retained by Medical Xpress in any form.

Newsletter sign up

Get weekly and/or daily updates delivered to your inbox. You can unsubscribe at any time and we'll never share your details to third parties.

More information Privacy policy

Donate and enjoy an ad-free experience

We keep our content available to everyone. Consider supporting Science X's mission by getting a premium account.

E-mail newsletter

WATCH VIDEOS

Bay Area Autism Collective creates autism-affirming community spaces

SAN FRANCISCO -- Today, the word "unmasking" evokes memories of lifted lockdowns and retired mandates. But for Bay Area Autism Collective founder Bird Sellergren, the concept of unmasking had a profound meaning long before the pandemic.

"Masking is the act of making yourself seem less autistic to be more appealing to other people," Bird explained, "which is inevitably an exhausting, taxing process."

Bird, who describes themself as an autistic self-advocate, emphasized the mental health benefits of unmasking: "research studies have shown that when people can unmask, their mental health improves. Providing space for that to happen is critical."

When Bird struggled to find a comfortable, autistic-led space to unmask in the Bay Area, they decided to create one. Last spring, Bird founded the Bay Area Autism Collective, a nonprofit dedicated to providing peer support groups led exclusively by autistic people for autistic people.

Currently, BAAC hosts four identity-based social groups, including groups for parents and people recovering from addiction.

"It started really small, and we didn't have any funding for like six months, just running on a shoestring," Bird recalled. Today, a little over a year after its founding, BAAC serves 160 people a month.

"I didn't realize it was going to be as powerful as it is," Bird admitted.

V Tisi, a BAAC group facilitator and executive board member, echoed Bird's comments on the power of unmasking. She expressed frustration with available autism services focused on 'curing' autism or training autistic adults to pass as neurotypical.

"For those of us who have nothing to 'cure' because we enjoy being our authentic, autistic self... we're trying to unmask to free ourselves," Tisi explained.

Drawing on her experience as a speech pathologist for children, Tisi brought up the lack of resources available for adults with autism. She explained that while public schools are federally mandated to provide services for children with autism, for adults, "there was nothing out there for us....(BAAC) is something I wish existed a long time ago."

In contrast to other services for autistic adults, Bay Area Autism Collective prides themselves on being a group by and for autistic people.

When asked what makes BAAC unique, Bird said, "I'm autistic. Our leadership is autistic. The people facilitating the groups are autistic... and that authenticity is really important because we know best what we need and we're able to provide each other services that are far more suited for us."

After a year of remarkable growth, BAAC's board is looking to the future.

"What we really need to keep growing and operating to meet the needs that we are finding is donations," Bird explained. They emphasized the overwhelming demand for BAAC's services, adding, "donations help keep us afloat, but also ensure we can grow."

To learn more and support Bay Area Autism Collective, visit here .

Related Topics

• SAN FRANCISCO
• COMMUNITY STRONG

Memories from a bygone era take center stage at the Olympic Auditorium exhibition

Unlock the past: Explore 19th century mansions, historic homes

Rooftop Coco Club brings Art Deco-inspired, Miami Beach vibe to the West Coast

Experience the thrills, tantalizing tastes, and magic of the LA County Fair

Top stories.

Newsom would slash 10K vacant state jobs to help close $27.6B deficit

• 3 minutes ago

Sam Rubin, longtime KTLA entertainment reporter, dies at 64

IE family terrified after hidden camera found recording their home

• 8 minutes ago

Northern Lights may be visible in parts of CA overnight

1 arrested in drug bust near Hollywood apartment complex

• 10 minutes ago

Sean Burroughs, Long Beach LLWS star and former MLB player, dies at 43

• 3 hours ago

Former CEO of Fatburger charged in tax evasion case

On The Red Carpet Presents: 'Kingdom of the Planet of the Apes'