The Year in Review, 2021

This year was filled with both challenges and encouraging signs of progress. The world continues to cope with the many hardships associated with the COVID-19 pandemic, which have negatively impacted the community, including scientists who study autism. Families and individuals continue to show individualized and specialized needs, specifically those from racially and ethnically diverse communities, females and girls, and we continue to understand the specific needs of those groups. For example, the close of the year saw the publication of a report by the Lancet Commission, which formally introduces the concept of “profound autism” representing individuals with different support needs. New CDC data released in December also show that autism rates are rising while age at diagnosis is decreasing [1]. While this is not a comprehensive summary of every single autism discovery in 2021, here we summarize many significant autism discoveries and related news of the past year:

Lancet Commission Endorses Use of Term “Profound Autism”

On December 6, The Lancet published an extensive report from a global team of autism researchers and stakeholders. The report, titled “The Lancet Commission on the Future of Care and Clinical Research in Autism,” recognized that effective autism assessment and care require personalized, stepped-care approaches that meet an individual’s needs throughout their lives, and that greater investment is urgently needed to develop and refine practical interventions that can improve the lives of people with autism. The Commission also formally introduced the term “profound autism” to distinguish individuals who have high dependency needs and urged policymakers to focus on the unique needs of this group, which represents approximately 30% of people with autism [2]. The goal of this label is to recognize the uniqueness of these individuals and that their support needs and outcomes are different from those of others. There is also evidence that the underlying biology of those with “profound autism” is different [3-5].

Amy and Jonah Lutz

The term “profound autism” is intended to describe autistic people who are likely to need 24-hour support throughout their lives. The report states that useful categories like “profound autism” can bring attention to the different needs of different people. In fact, the goal of the new term “profound autism” is to equip parents, service providers and the public with the language necessary to ensure that each individual with autism receives the accommodations and interventions they need [2]. These can vary greatly. Some of those diagnosed with autism engage in destructive or self-injurious behavior. Some have intellectual disabilities; others are star students. Some are unable to perform basic tasks like brushing their teeth and getting dressed; others can live fully independent lives. Autism is a disorder in which no two diagnoses look the same, and terms like “profound autism” help distinguish needs.

CDC Reports Autism Prevalence Continues to Rise

The CDC ADDM Network released updated autism prevalence data this year, announcing that one in 44 8-year-old children is diagnosed with autism [1]. This is an increase from the one in 54 number for 8-year-olds reported in March 2020. Using a slightly different but validated methodology from previous years [6], new CDC data confirm that autism prevalence and diagnoses have gone up steadily in the past five years. 

The CDC information makes it clear that we are getting better at diagnosing autism and identifying it earlier, which is encouraging because research has consistently shown the value of early intervention. However, more than 58% of children identified had intellectual disability or borderline intellectual disability. This cohort of children with profound autism warrants more attention from policymakers and service providers, as their needs are dramatically different from those with milder forms of autism. While the prevalence went up, the demographics across race, ethnicity and cognitive ability stayed pretty stable from the last prevalence estimate [1]. This information calls for further understanding of the nature of this rise beyond just diagnostic practices, including alerting pediatricians and supporting further and more expanded studies of gene x environment interactions [7]. One example would be the differential influence of toxic chemicals on cells with genetic mutations associated with autism, which revealed a susceptibility to toxic chemical exposures with cells with autism-related variation [8].

Reaching the Hard to Reach

Those from racially and ethnically diverse backgrounds have long been recognized as being diagnosed later, if at all. There are years and years of CDC data which show that while this trend is improving, it is still problematic in terms of equitable access to services. It also produces another problem that perpetuates the underdiagnosis and lack of access: not enough families from racially and ethnically diverse communities are being studied in research, which means most research findings apply to white communities, not the communities represented in the real world who need help [9]. A few studies this year specifically targeted those from either Hispanic [10] or Black and Hispanic families [11, 12]and found their needs were different or developed tools for their particular culture. However, in a commentary this year, researchers highlighted the need to engage diverse communities at the beginning of the research question, to ensure they have a voice at each step, and to possibly adapt the study question to their particular circumstances [9].  

Unfortunately, not all of the challenges facing underserved communities are the same. For example, those who are minimally verbal and have intellectual disabilities are left out of research for logistical reasons, or, in many cases, the intellectual and verbal abilities of individuals with more profound autism are not reported at all [13]. Those with intellectual disability are usually recognized more often, but there were only four intervention studies published in PubMed in 2021 that specifically included a group of autistic people with intellectual disability.  

Understanding Autism in Females 

While females with ASD have not typically been placed in the “underdiagnosed” category, they certainly are a group that has been underserved by scientific research. Because of the 4:1 difference in prevalence for males to females, autism research studies typically include four times fewer females, which means findings are not generalizable to females [14-17].

In the last year, there have been several studies showing that the challenges faced by autistic females are different from those facing autistic males. For example, a phenomenon called “passing as autistic” (otherwise known as masking) — where someone with autism tries to hide their symptoms to pass in social situations — was found to be elevated in females [18, 19]. Comorbidities like epilepsy have been shown to be higher in females [20], and baseline brain activity in autistic youth is different based on biological sex [16]. While the female brain is clearly different from the male brain, even in autism, the lack of females included in research has also significantly impaired our understanding of brain differences between males and females with ASD for more personalized support [21].

Because of the disparity in diagnosis between males and females, there are very few studies that can examine the effects of sex and gender on diagnosis, making consistent findings across sex/gender almost impossible, but it has been done [22]. What has been learned is that the striatum (and genes controlling striatal development) may play a role in autism symptoms in females. This has not been identified as an area of interest in males [23]. Research also shows that females have a higher burden of variants in the oxytocin receptor gene, which affect them differently than males with ASD [15], and differential links between brain activity and autism features [16], supporting something called the “female protective effect.” This protective effect might be genetic or might occur through the estrogen pathway [24, 25]. Finally, while the entire autism community has a higher than expected rate of gender dysphoria, it seems to affect girls more than boys [26]. Behavioral features are also slightly different, which complicates diagnosis [17]. Together, these results demonstrate that scientific findings, including use of biomarkers for diagnosis, which are seen in males may be different than those seen in females. Scientists need to ensure that enough females are recruited into research studies and better understand the difference between females and males to ensure that scientific findings generalize to care in the community.

The Pandemic Is Still Causing Problems

Almost two years into the pandemic, scientists are still working to understand the long-term effects on people with autism. Studies focused on increases in challenging behaviors and loneliness in autistic youth and adults [27, 28], and also on understanding the mental health challenges due to prolonged social distancing guidelines, including multiple waves of lockdowns [29-32]. Additionally, studies show that families with autism are disproportionately affected by job losses and food insecurity [33, 34]. And while telehealth-based diagnosis and services are becoming more common as a result of social distancing, families of younger children who need direct behavioral supports remain the least satisfied [35, 36], a trend continuing from 2020 [37]. The challenges associated with the pandemic are not limited to those with a diagnosis and their families. Scientists who dedicate their lives to help those on the spectrum have struggled with some of the same issues that families with autism have [38], including mental health and childcare challenges. This compounds the problem of developing scientific discoveries and delivering them to the community.

New Technologies for Diagnosis and Treatment

Child enrolled in the Duke study watching the video

With the pandemic came the use of remote and virtual technologies, not just to identify and diagnose autism, but also to provide supports and services. As the pandemic continues, researchers are studying what works and what doesn’t, especially in families who say that they found telehealth more accessible and beneficial [35]. Remote assessments have changed the nature of how autism is diagnosed, with scientists emphasizing the need for use of good clinical judgment rather than reliance on singular instruments [39]. Telehealth assessments have meant that diagnosis is now more accessible to those in remote areas who are traditionally underdiagnosed. Another bright spot is that the pandemic has allowed children to be observed remotely in their home environment, which may significantly enhance the ability of clinicians to observe early markers of autism [39, 40]. New technologies that enable videotaping via remote camera — for later review by clinicians — are also gaining traction. Recently, Cognoa received FDA marketing authorization for its new remote videotaping tool, CanvasDx. Duke University also published data a tool that plays different movies and visual scenes on an iPad and allows clinicians to determine the likelihood of an autism diagnosis by examining where the children looked in the scene [41], as past research has shown that children with autism are more likely to look at objects and less likely to look at social stimuli. In both cases, these recordings, together with standard early screening methods, can be analyzed to help facilitate diagnosis. A 2021 review found these mobile digital technologies to be promising in diagnosis [42].

Beyond just supporting diagnosis, mobile technology may be used to improve cognitive and social skills across the lifespan [43]. A recent systematic review indicated that these mobile interventions were particularly helpful in targeting practical skills [43, 44]. They can also be used to predict responses to stressful situations and abnormal sensory arousal [45]. Finally, robots and videogames on devices are showing promise in helping kids with autism develop social skills [46, 47]. While these technologies may have benefits beyond the pandemic and can alleviate some of the burden of traveling to multiple appointments, they will not replace the need for children to be diagnosed and/or receive therapy from trained, in-person clinicians [39, 48].

Intervention Before Diagnosis

A few years ago, scientists in the UK began studying the possibility of promoting skills in parents as a way to mitigate autism symptoms in infants [49]. By working with parents in their home and promoting social and communication skills through activities like reading and play, autism severity scores improved. This year, a group in Australia conducted its own randomized controlled study starting at 9-12 months — before a diagnosis can be made — to provide support to parents and offer video feedback on supporting language and social development in their infants. This study showed that support of infant social and communication skills measured at one year led to a reduction of autism severity scores at 24 months, with these improvements being maintained long after the end of the intervention period [50]. Factors like caregiver interaction and adjusting the environment to promote learning in these toddlers are key ingredients to changing developmental trajectory [51, 52]. New tools are also allowing earlier and earlier detection of markers of ASD, with some evidence that it can be done as early as 12 months of age [53]. These findings represent the potential benefits of decades worth of early detection work and operationalize a methodology for parents to learn to promote social and communication skills in their infants.

However, the need for earlier detection and diagnosis of autism remains a priority within autism research and the autism community. This year, researchers identified changes in the grey matter (cell bodies) and white matter (the neuron branches) in children as young as 12 months of age [54] who go on to be diagnosed with autism. Changes in brain activity, while not a diagnostic marker, can be seen in infants as young as 3 months of age [55] and can prove helpful in diagnosis at 6 months [56]. In addition, some behavioral signs can also trigger preemptive intervention. Groups led by UC Davis demonstrated both declining gaze to faces, which was replicated in two different cohorts [57], and unusual inspection of objects at 9 months, which predicts reduced social engagement at 12 months in those who later develop an autism diagnosis [58]. In addition, vocalizations (or intents to communicate) were lower in children as young as 12 months [59]. Together, while not diagnostic, some of these early markers and signs can facilitate entry into preemptive interventions, which can produce skills in caregivers and infants that change the developmental trajectory. Finally, there is an erroneous perception that parents believe that all of autism is “bad” and needs to “be eliminated.” In fact, when they were specifically asked, parents identified characteristics like love, kindness, humor, humanity and resilience that they value and appreciate in their children [60].

Autism and Aging

There has traditionally been a lack of understanding as to what happens to autistic adults as they enter their golden years. This year, Drexel University utilized Medicaid data to examine the risk of dementia in those with autism and found that those with ASD were 2.6 times more likely to be diagnosed with dementia compared to the general population [61]. This has profound impacts on planning for elderly relatives with ASD and developing interventions that may stunt the development of dementia in this population.

Understanding the Role of Genetics in Autism 

Traditionally, genetic variation association with autism has been bucketed as “rare” mutations and “common” mutations. Rare mutations on genes typically lead to deleterious effects such as seizures or intellectual disability [62]. Sometimes, like in the case of BRCA (breast cancer gene), they can be fatal. Common mutations are seen in lots of people, not just those with autism, but the human body can tolerate many common mutations with no major effects. However, if the genetic variant is found in an autism risk gene, for example, then it can dispose someone to an autism diagnosis [62]. Mutations found in autism risk genes — including those associated with cell adhesion, neuron-glia interactions and synapse formation — are most likely to be common variants involved in autism [3].

This year, sequencing of more than 800 people with an autism diagnosis revealed that 27% had evidence of a rare genetic mutation, mostly in one of the 102 genes identified in 2020 as being relevant for ASD [3, 63]. Presence of a mutation of one of these genes also results in a distinct set of behavioral features early in life that is different from those without a rare mutation [64]. Interestingly, instead of advancing the traditional “rare vs. common variation debate,” scientists this year learned that even in those who have a rare genetic mutation, there is also a high burden of common variation [63]. Scientists found that both rare and common genetic risks contribute to autism susceptibility, and that the dual risks may increase the likelihood of an autism diagnosis [63]. These findings make things complicated for genetic counselors who need to assess all the factors and communicate to families whether or not a particular rare variant is causative. In addition, sequencing technologies are revealing more and more genes that are relevant to ASD but incredibly rare; in fact, they are likely to be part of a multi-factorial cause of individual cases of ASD [65]. Finally, we’ve learned that common variation influences not only core autism symptoms, but also psychiatric comorbidities [66].

A Family with ADNP Syndrome

Studying Rare Genetic Syndromes Opens the Door to New Therapeutics

The use of induced pluripotent stem cells, or iPSCs, to study the brain on a cellular level has so far been focused on rare genetic diseases associated with autism, like Dup15q syndrome, CNTNAP2 and CDKL5 disorder. However, while the genetic targets may be more specific than in idiopathic autism, there are also converging mechanisms of disrupted connectivity in the brain that make these single gene disorders useful in understanding the neurobiology of ASD [67-71].

In addition to some shared (and some distinct) neurobiology across autism with a known genetic cause, there is overlap on the basic neurobiology level in terms of cortical thickness [72] and G-protein-coupled-receptors across different psychiatric disorders, including autism [73]. Some of these rare genetic syndromes have been responsive to targeted gene therapy, which opens up the door for them to be used in idiopathic autism if proven safe and effective in large groups of people with neurodevelopmental disorders.

Remember Glial Cells? They May Play a Bigger Role Than We Thought.

Photograph of a glial cell

One brain cell type that is experiencing renewed interest in autism is glial cells, particularly with regard to sex differences in ASD. Glial cells are found in the brain, but they do not communicate with each other. Rather, they provide insulation to neurons that do communicate via electrical impulses. Traditionally, because they were not thought to be communication cells, they were not considered critical for study. But recent evidence has shown that there may be different subtypes of autism defined by the upregulation of genes that control glial cells [74]. Gene expression in these microglia may also contribute to differences in brain structure [75]. In addition, the direct study of brain tissue has shown that in certain layers of the cortex, astrocytes — a type of glial cell — are decreased [76]. Taken together, the dysregulation of glial cells may contribute to different cell processes, brain structure, functional changes and psychiatric syndromes associated with autism.

What Can We Do to Improve Outcomes of Those with Autism?

New research shared this year focused on improving outcomes. First, we learned that the presence of a brother or sister not on the autism spectrum improves adaptive behavior across the lifespan for those with an autism diagnosis [77]. On the other hand, parental stress in early life and early adverse events can make outcomes worse [78].

Research continues to show that, especially in the early years, parents and caregivers can play a critical and life-changing role in their child’s development. For young children, Naturalistic Developmental Behavioral Interventions (NDBIs), which are child-led and utilize behavioral principles delivered in the home, are most helpful [79, 80] and now may be delivered via telehealth [81]. One good thing to come out of the pandemic is the availability of remote access to video series, including but not limited to the Autism Navigator, which can help parents identify early signs and deliver these interventions to their young children from home [82]. The literature on the efficacy of these NDBIs grows greater every year.  However, not everyone has access to early interventions or even expert clinicians. To address the disparities seen across the world and across different comorbidities and other individual factors, the Lancet Commission report called for a stepped-care and personalized health model for interventions [2]. This includes provisions not just for individual and family factors, but also for accessibility and cost. These recommendations on how different groups approach care are essential to obtain a more specialized approach to helping families and individuals on the spectrum lead happy, healthy and successful lives. Unfortunately, some promising therapeutics like oxytocin failed to meet the cut of significantly helping those with ASD [83].  Other organ systems besides the brain, including the gastrointestinal system, continue to be investigated to help alleviate co-occurring medical conditions.  Many families turn to things like probiotics to help with issues like constipation and diarrhea, however, new evidence suggests that the microbiome is more influenced by diet than autism itself [84] calling into question the validity of probiotic use for GI problems.

In Memoriam

Sir Michael Rutter

Sadly, the autism community lost three scientists this year who have made enormous contributions to the field and changed the way people think about autism. Sir Michael Rutter, known as the Father of Child Psychiatry, a professor at the Institute of Psychiatry at Kings College London, was one of the most influential psychiatric scientists of the past 50 years. He was one of the first researchers to study autism, publishing a study of autistic twins in 1977. He helped dispel the myth that parenting styles influenced an autism diagnosis and brought scientific rigor to understanding autism. He helped develop the two gold standard tools for diagnosis: the ADI-R and the ADOS. His commitment to helping children and families was not limited to autism, however; he helped families with a number of psychiatric conditions and behavioral issues.

Li-Ching Lee

Li-Ching Lee, who served as the Associate Director for Global Autism at the Wendy Klag Center of Johns Hopkins School of Public Health, was one of the reasons why autism is recognized as a global condition. She focused her research on identifying and helping families with autism across the world, calling it a “human rights issue” when the needs of families in under-resourced countries were ignored. She also worked tirelessly to understand autism in the US, working closely with the CDC to understand who and where people were being diagnosed and how they could be helped. Beyond being an amazing scientist, her fellow students have called her an amazing friend, mentor and teacher who went above and beyond to help her students be successful while helping families.

George C. Wagner

Finally, George C. Wagner of Rutgers University was one of the first behavioral neuroscientists to try to develop a behavioral model of ASD in rodents at a time when scientists were starting to try to understand how to recapitulate the features in model systems. His work helped define how autism should be studied in animals, and how it overlapped or was different than other psychiatric disorders. He based his models on the core features rather than particular behaviors, including delay of skill development, plateauing of skills and possible regression of skills. This helped fundamentally change the field of animal models of ASD. Many of his students (including ASF CSO Alycia Halladay) went on to help families with ASD following training.

All three of these amazing scientists will be remembered not just for their contributions to science, but for their training of early career researchers who continue to make an impact.

The Last Word

Over the last 40 years, autism has moved from a categorial (yes/no) diagnosis to a dimensional diagnosis [85], taking into account the complexity and differences of features across the lifespan. While there may be core features of ASD that are common across the spectrum, people with autism, just like people without autism, are all different and need to be recognized as such [2, 86].  

While this summary captures what happened in 2021, we urge you to read more about how science has changed the way families with autism have been perceived, treated and helped over the past 40 years. The Journal of Autism and Developmental Disorderspublished a series that you can look through here, and Dr. Giacomo Vivanti shared his long-term perspective on the November 14 ASF podcast here: In fact, one of the best ways to keep up with changes in autism science is to subscribe to the ASF podcast on Spotify, Apple Podcasts or Google Podcasts.

You can make a difference

These research findings and important discoveries were thanks to the thousands of families and autistic individuals who participated in research studies over the past few years. As you can read from this report, your contributions make an impact. There are other research opportunities and as we continue to live in the pandemic, many more of them are available in your own home with interaction with professionals to support you. You can read more about them here. Finally, there are ways to learn about credible science outside social media, which also includes SpectrumNews and the Autism BrainNet. Just signing up for more information on the Autism BrainNet gets you regular information about what the brains of autistic people look like and how they are different from those without a diagnosis.


1.         Maenner, M.J., et al., Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018. MMWR Surveill Summ, 2021. 70(11): p. 1-16.

2.         Lord, C., et al., The Lancet Commission on the future of care and clinical research in autism. The Lancet, 2021.

3.         Mahjani, B., et al., Prevalence and phenotypic impact of rare potentially damaging variants in autism spectrum disorder. Mol Autism, 2021. 12(1): p. 65.

4.         Havdahl, A., et al., Age of walking and intellectual ability in autism spectrum disorder and other neurodevelopmental disorders: a population-based study. J Child Psychol Psychiatry, 2021. 62(9): p. 1070-1078.

5.         Reardon, A.M., et al., Subtyping Autism Spectrum Disorder Via Joint Modeling of Clinical and Connectomic Profiles. Brain Connect, 2021.

6.         Maenner, M.J., et al., Comparison of 2 Case Definitions for Ascertaining the Prevalence of Autism Spectrum Disorder Among 8-Year-Old Children. Am J Epidemiol, 2021. 190(10): p. 2198-2207.

7.         Volk, H.E., et al., Considering Toxic Chemicals in the Etiology of Autism. Pediatrics, 2021.

8.         Modafferi, S., et al., Gene-Environment Interactions in Developmental Neurotoxicity: a Case Study of Synergy between Chlorpyrifos and CHD8 Knockout in Human BrainSpheres. Environ Health Perspect, 2021. 129(7): p. 77001.

9.         Maye, M., et al., Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities. J Autism Dev Disord, 2021.

10.       Harris, J.F., et al., Validation of the Developmental Check-In Tool for Low-Literacy Autism Screening.Pediatrics, 2021. 147(1).

11.       Azad, G., et al., The influence of race on parental beliefs and concerns during an autism diagnosis: A mixed-method analysis. Autism, 2021: p. 13623613211044345.

12.       Wagner, S., I.L. Rubin, and J.S. Singh, Underserved and Undermeasured: a Mixed-Method Analysis of Family-Centered Care and Care Coordination for Low-Income Minority Families of Children with Autism Spectrum Disorder. J Racial Ethn Health Disparities, 2021.

13.       Thurm, A., et al., Making Research Possible: Barriers and Solutions For Those With ASD and ID. J Autism Dev Disord, 2021.

14.       Skaletski, E.C., et al., Quality-of-Life Discrepancies Among Autistic Adolescents and Adults: A Rapid Review. Am J Occup Ther, 2021. 75(3).

15.       Lawrence, K.E., et al., Impact of autism genetic risk on brain connectivity: a mechanism for the female protective effect. Brain, 2021.

16.       Neuhaus, E., et al., Resting state EEG in youth with ASD: age, sex, and relation to phenotype. J Neurodev Disord, 2021. 13(1): p. 33.

17.       Dillon, E.F., et al., Sex Differences in Autism: Examining Intrinsic and Extrinsic Factors in Children and Adolescents Enrolled in a National ASD Cohort. J Autism Dev Disord, 2021.

18.       Libsack, E.J., et al., A Systematic Review of Passing as Non-autistic in Autism Spectrum Disorder. Clin Child Fam Psychol Rev, 2021. 24(4): p. 783-812.

19.       Cook, J., et al., Camouflaging in autism: A systematic review. Clin Psychol Rev, 2021. 89: p. 102080.

20.       Bougeard, C., et al., Prevalence of Autism Spectrum Disorder and Co-morbidities in Children and Adolescents: A Systematic Literature Review. Front Psychiatry, 2021. 12: p. 744709.

21.       Mo, K., et al., Sex/gender differences in the human autistic brains: A systematic review of 20 years of neuroimaging research. Neuroimage Clin, 2021. 32: p. 102811.

22.       Floris, D.L., et al., Towards robust and replicable sex differences in the intrinsic brain function of autism. Mol Autism, 2021. 12(1): p. 19.

23.       Jack, A., et al., A neurogenetic analysis of female autism. Brain, 2021. 144(6): p. 1911-1926.

24.       Enriquez, K.D., A.R. Gupta, and E.J. Hoffman, Signaling Pathways and Sex Differential Processes in Autism Spectrum Disorder. Front Psychiatry, 2021. 12: p. 716673.

25.       Willsey, H.R., et al., Parallel in vivo analysis of large-effect autism genes implicates cortical neurogenesis and estrogen in risk and resilience. Neuron, 2021. 109(5): p. 788-804 e8.

26.       Brunissen, L., et al., Sex Differences in Gender-Diverse Expressions and Identities among Youth with Autism Spectrum Disorder. Autism Res, 2021. 14(1): p. 143-155.

27.       Hards, E., et al., Loneliness and mental health in children and adolescents with pre-existing mental health problems: A rapid systematic review. Br J Clin Psychol, 2021.

28.       Kalb, L.G., et al., Psychological distress among caregivers raising a child with autism spectrum disorder during the COVID-19 pandemic. Autism Res, 2021. 14(10): p. 2183-2188.

29.       Young, E., et al., Caregiver burnout, gaps in care, and COVID-19: Effects on families of youth with autism and intellectual disability. Can Fam Physician, 2021. 67(7): p. 506-508.

30.       Polonyiova, K., et al., Comparing the impact of the first and second wave of COVID-19 lockdown on Slovak families with typically developing children and children with autism spectrum disorder. Autism, 2021: p. 13623613211051480.

31.       Siracusano, M., et al., Parental Stress and Disability in Offspring: A Snapshot during the COVID-19 Pandemic. Brain Sci, 2021. 11(8).

32.       Lois Mosquera, M., et al., Autistic adults’ personal experiences of navigating a social world prior to and during Covid-19 lockdown in Spain. Res Dev Disabil, 2021. 117: p. 104057.

33.       Karpur, A., et al., Food insecurity in the households of children with autism spectrum disorders and intellectual disabilities in the United States: Analysis of the National Survey of Children’s Health Data 2016-2018. Autism, 2021. 25(8): p. 2400-2411.

34.       Panjwani, A.A., R.L. Bailey, and B.L. Kelleher, COVID-19 and Food-Related Outcomes in Children with Autism Spectrum Disorder: Disparities by Income and Food Security Status. Curr Dev Nutr, 2021. 5(9): p. nzab112.

35.       Bhat, A., Analysis of the SPARK study COVID-19 parent survey: Early impact of the pandemic on access to services, child/parent mental health, and benefits of online services. Autism Res, 2021. 14(11): p. 2454-2470.

36.       Corona, L.L., et al., Utilization of telemedicine to support caregivers of young children with ASD and their Part C service providers: a comparison of intervention outcomes across three models of service delivery. J Neurodev Disord, 2021. 13(1): p. 38.

37.       Jeste, S., et al., Changes in access to educational and healthcare services for individuals with intellectual and developmental disabilities during COVID-19 restrictions. J Intellect Disabil Res, 2020.

38.       Harrop, C., et al., A lost generation? The impact of the COVID-19 pandemic on early career ASD researchers. Autism Res, 2021. 14(6): p. 1078-1087.

39.       Zwaigenbaum, L., et al., Rethinking autism spectrum disorder assessment for children during COVID-19 and beyond. Autism Res, 2021. 14(11): p. 2251-2259.

40.       Delehanty, A.D. and A.M. Wetherby, Rate of Communicative Gestures and Developmental Outcomes in Toddlers With and Without Autism Spectrum Disorder During a Home Observation. Am J Speech Lang Pathol, 2021. 30(2): p. 649-662.

41.       Chang, Z., et al., Computational Methods to Measure Patterns of Gaze in Toddlers With Autism Spectrum Disorder. JAMA Pediatr, 2021. 175(8): p. 827-836.

42.       Desideri, L., P. Perez-Fuster, and G. Herrera, Information and Communication Technologies to Support Early Screening of Autism Spectrum Disorder: A Systematic Review. Children (Basel), 2021. 8(2).

43.       de Nocker, Y.L. and C.K. Toolan, Using Telehealth to Provide Interventions for Children with ASD: a Systematic Review. Rev J Autism Dev Disord, 2021: p. 1-31.

44.       Leung, P.W.S., et al., Effectiveness of Using Mobile Technology to Improve Cognitive and Social Skills Among Individuals With Autism Spectrum Disorder: Systematic Literature Review. JMIR Ment Health, 2021. 8(9): p. e20892.

45.       Nuske, H.J., et al., Evaluating commercially available wireless cardiovascular monitors for measuring and transmitting real-time physiological responses in children with autism. Autism Res, 2021.

46.       Penev, Y., et al., A Mobile Game Platform for Improving Social Communication in Children with Autism: A Feasibility Study. Appl Clin Inform, 2021. 12(5): p. 1030-1040.

47.       Riches, S., et al., Therapeutic engagement in robot-assisted psychological interventions: A systematic review. Clin Psychol Psychother, 2021.

48.       Nuske, H.J. and D.S. Mandell, Digital health should augment (not replace) autism treatment providers.Autism, 2021. 25(7): p. 1825-1827.

49.       Green, J., et al., Randomised trial of a parent-mediated intervention for infants at high risk for autism: longitudinal outcomes to age 3 years. J Child Psychol Psychiatry, 2017. 58(12): p. 1330-1340.

50.       Whitehouse, A.J.O., et al., Effect of Preemptive Intervention on Developmental Outcomes Among Infants Showing Early Signs of Autism: A Randomized Clinical Trial of Outcomes to Diagnosis. JAMA Pediatr, 2021. 175(11): p. e213298.

51.       Davis, P.H., et al., Caregiver responsiveness as a mechanism to improve social communication in toddlers: Secondary analysis of a randomized controlled trial. Autism Res, 2021.

52.       Grzadzinski, R., et al., Pre-symptomatic intervention for autism spectrum disorder (ASD): defining a research agenda. J Neurodev Disord, 2021. 13(1): p. 49.

53.       Wetherby, A.M., et al., The Early Screening for Autism and Communication Disorders: Field-testing an autism-specific screening tool for children 12 to 36 months of age. Autism, 2021. 25(7): p. 2112-2123.

54.       Godel, M., et al., Altered Gray-White Matter Boundary Contrast in Toddlers at Risk for Autism Relates to Later Diagnosis of Autism Spectrum Disorder. Front Neurosci, 2021. 15: p. 669194.

55.       Tran, X.A., et al., Functional connectivity during language processing in 3-month-old infants at familial risk for autism spectrum disorder. Eur J Neurosci, 2021. 53(5): p. 1621-1637.

56.       Peck, F.C., et al., Prediction of autism spectrum disorder diagnosis using nonlinear measures of language-related EEG at 6 and 12 months. J Neurodev Disord, 2021. 13(1): p. 57.

57.       Gangi, D.N., et al., Declining Gaze to Faces in Infants Developing Autism Spectrum Disorder: Evidence From Two Independent Cohorts. Child Dev, 2021. 92(3): p. e285-e295.

58.       Miller, M., et al., Repetitive behavior with objects in infants developing autism predicts diagnosis and later social behavior as early as 9 months. J Abnorm Psychol, 2021. 130(6): p. 665-675.

59.       Plate, S., et al., Infant vocalizing and phenotypic outcomes in autism: Evidence from the first 2 years. Child Dev, 2021.

60.       Cost, K.T., et al., “Best Things”: Parents Describe Their Children with Autism Spectrum Disorder Over Time.J Autism Dev Disord, 2021. 51(12): p. 4560-4574.

61.       Vivanti, G., et al., The prevalence and incidence of early-onset dementia among adults with autism spectrum disorder. Autism Res, 2021. 14(10): p. 2189-2199.

62.       Gaugler, T., et al., Most genetic risk for autism resides with common variation. Nat Genet, 2014. 46(8): p. 881-5.

63.       Klei, L., et al., How rare and common risk variation jointly affect liability for autism spectrum disorder. Mol Autism, 2021. 12(1): p. 66.

64.       Wickstrom, J., et al., Patterns of delay in early gross motor and expressive language milestone attainment in probands with genetic conditions versus idiopathic ASD from SFARI registries. J Child Psychol Psychiatry, 2021. 62(11): p. 1297-1307.

65.       Wilfert, A.B., et al., Recent ultra-rare inherited variants implicate new autism candidate risk genes. Nat Genet, 2021. 53(8): p. 1125-1134.

66.       Rodriguez-Gomez, D.A., et al., A systematic review of common genetic variation and biological pathways in autism spectrum disorder. BMC Neurosci, 2021. 22(1): p. 60.

67.       de Jong, J.O., et al., Cortical overgrowth in a preclinical forebrain organoid model of CNTNAP2-associated autism spectrum disorder. Nat Commun, 2021. 12(1): p. 4087.

68.       Jacot-Descombes, S., et al., Altered synaptic ultrastructure in the prefrontal cortex of Shank3-deficient rats.Mol Autism, 2020. 11(1): p. 89.

69.       Colombo, E., et al., The K63 deubiquitinase CYLD modulates autism-like behaviors and hippocampal plasticity by regulating autophagy and mTOR signaling. Proc Natl Acad Sci U S A, 2021. 118(47).

70.       Victor, A.K., et al., Molecular Changes in Prader-Willi Syndrome Neurons Reveals Clues About Increased Autism Susceptibility. Front Mol Neurosci, 2021. 14: p. 747855.

71.       Vasic, V., et al., Translating the Role of mTOR- and RAS-Associated Signalopathies in Autism Spectrum Disorder: Models, Mechanisms and Treatment. Genes (Basel), 2021. 12(11).

72.       Writing Committee for the Attention-Deficit/Hyperactivity, D., et al., Virtual Histology of Cortical Thickness and Shared Neurobiology in 6 Psychiatric Disorders. JAMA Psychiatry, 2021. 78(1): p. 47-63.

73.       Monfared, R.V., et al., Transcriptome Profiling of Dysregulated GPCRs Reveals Overlapping Patterns across Psychiatric Disorders and Age-Disease Interactions. Cells, 2021. 10(11): p. 2967.

74.       Nassir, N., et al., Single-cell transcriptome identifies molecular subtype of autism spectrum disorder impacted by de novo loss-of-function variants regulating glial cells. Hum Genomics, 2021. 15(1): p. 68.

75.       Takanezawa, Y., et al., Microglial ASD-related genes are involved in oligodendrocyte differentiation. Sci Rep, 2021. 11(1): p. 17825.

76.       Falcone, C., et al., Neuronal and glial cell number is altered in a cortical layer-specific manner in autism.Autism, 2021. 25(8): p. 2238-2253.

77.       Rosen, N.E., J.B. McCauley, and C. Lord, Influence of siblings on adaptive behavior trajectories in autism spectrum disorder. Autism, 2021: p. 13623613211024096.

78.       Hollocks, M.J., et al., The association of adverse life events and parental mental health with emotional and behavioral outcomes in young adults with autism spectrum disorder. Autism Res, 2021. 14(8): p. 1724-1735.

79.       Schuck, R.K., et al., Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework. J Autism Dev Disord, 2021.

80.       Waddington, H., et al., The effects of JASPER intervention for children with autism spectrum disorder: A systematic review. Autism, 2021. 25(8): p. 2370-2385.

81.       Dai, Y.G., et al., Development and Acceptability of a New Program for Caregivers of Children with Autism Spectrum Disorder: Online Parent Training in Early Behavioral Intervention. J Autism Dev Disord, 2021. 51(11): p. 4166-4185.

82.       Wainer, A.L., et al., Examining a stepped-care telehealth program for parents of young children with autism: a proof-of-concept trial. Mol Autism, 2021. 12(1): p. 32.

83.       Sikich, L., et al., Intranasal Oxytocin in Children and Adolescents with Autism Spectrum Disorder. N Engl J Med, 2021. 385(16): p. 1462-1473.

84.       Yap, C.X., et al., Autism-related dietary preferences mediate autism-gut microbiome associations. Cell, 2021. 184(24): p. 5916-5931 e17.

85.       Rosen, N.E., C. Lord, and F.R. Volkmar, The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond. J Autism Dev Disord, 2021. 51(12): p. 4253-4270.

86.       Lord, C. and S.L. Bishop, Let’s Be Clear That “Autism Spectrum Disorder Symptoms” Are Not Always Related to Autism Spectrum Disorder. Am J Psychiatry, 2021. 178(8): p. 680-682.

Sleep in Children with Autism: What do we know and what do we need to know?

Beth A. Malow, MD, MS

Professor of Neurology and Pediatrics, Burry Chair in Cognitive Childhood Development, Vanderbilt University, Nashville, TN

            Vanderbilt Kennedy Center for Human Development, Nashville TN

Sleep is an essential component of a healthy life, like food and oxygen.  When we don’t sleep well, we feel irritable and have difficulty concentrating. With this in mind, imagine how a child on the autism spectrum feels and behaves without sleep (and how their sleep-deprived caregivers feel)!

Given how common sleep problems are, and how profoundly they affect children and their families,  it is timely to consider what we already know and what the future holds in our understanding of sleep in autism spectrum disorders (ASD).

What we’ve learned so far:  Sleep problems are common in children with ASD,  have many causes, and affect child and family functioning.  

Sleep problems are common in children with autism spectrum disorders (ASD) — ranging from 50-80% (Couturier et al., 2005; Krakowiak et al., 2008; Souders et al., 2009; Goldman et al. 2011), with similar rates across all ages and cognitive levels.  Insomnia, defined as difficulty falling asleep or staying asleep, is the most common sleep problem. Causes (Reynolds and Malow, 2011) range from medical conditions (e.g., gastrointestinal disorders, seizures, sleep apnea, attention deficit disorder, anxiety) and the medications used to treat these conditions (e.g., stimulants, antidepressants) to behavioral factors unique to the child with autism (for example, sensory sensitivities, difficulty transitioning to bedtime activities). Children, regardless of language abilities, may not understand parents expectations about sleep. Parents, in turn, may be too overwhelmed by other priorities and stressors to put a sleep plan in place. Proper identification of the causes of sleep difficulties in children with ASD is critical to successful treatment.

Behavioral and pharmacological treatments that improve sleep positively affect daytime functioning in the child and family (as reviewed in Malow et al., 2012) and may minimize the need for medications that target behavioral symptoms. For example, in 80 children receiving sleep education delivered by their parents (Malow et al., 2013), improvements in anxiety, attention, repetitive behavior, pediatric quality of life, and parenting sense of competence were also observed. While improving sleep does not necessarily change the core features of ASD, addressing  sleep concerns may ameliorate co-occurring medical conditions such as epilepsy or anxiety.  A well-rested child may also be more engaged in therapies that improve social interactions, and his well-rested parents may be empowered to advocate more effectively for his needs.

What we need to learn: What therapies for sleep are effective? Can we predict which treatments will work for subgroups of children?

We still have much more to learn about which therapies are effective for sleep in children with ASD. In particular, we need to understand the impact of treating co-occurring medical and psychiatric conditions (e.g., gastrointestinal disorders, anxiety) on sleep-onset and sleep-maintenance insomnia. For example, insomnia, anxiety, and GI disturbances may coexist in the same child, but whether one causes or contributes to the other coexisting conditions is unresolved. An alternative possibility is that insomnia, anxiety, and GI disturbance share an underlying mechanism. One possible mechanism may be autonomic dysfunction (Kushki, 2013), with sympathetic hyperarousal and parasympathetic underarousal.

While behavioral treatments for sleep have shown promise in ASD and other neurodevelopmental disorders (Malow et al., 2013; Weiskop et al., 2005 and others reviewed in Vriend, 2011), determining  subgroups of children who are most responsive to these therapies are needed. For example, children with short sleep duration and frequent night wakings (in whom medical causes of sleep disturbance have been excluded), or those with limited verbal skills, may have a differing treatment response to behavioral interventions than children with sleep onset delay. This differing response may result from biological causes, or alternatively, a poorer response to the intervention. In those requiring medications, we need to determine which medicines are safe and effective for a variety of sleep problems (sleep onset delay, night wakings). Supplemental melatonin has been studied to a greater extent than any other medication for sleep in ASD, but large well-controlled studies have been limited (Rossignol, 2011). Genetic factors, including those related to melatonin synthesis, may also be important (Melke, 2008) in determining which child may respond to a specific therapy.

Another subgroup of  individuals with ASDs worthy of study are adolescents and young adults. My colleagues at Vanderbilt are studying sleep patterns this population at baseline (Dr. Suzanne Goldman, funding from Autism Speaks), and with behavioral treatment (Dr. Whitney Loring, funding from Organization for Autism Research).

The area of sleep and autism is ripe for continued research, in terms of causes, treatments, and overlap with many other areas, ranging from medical co-occurring conditions to genetic and other biological markers to treatment trials. Being vigilant (pun intended) to the role of sleep in autism research has high potential to advance our knowledge of autism subtypes as well as our toolbox for real world treatments that impact people with ASD and their families.



Couturier JL, Speechley KN, Steele M, Norman R, Stringer B, Nicolson R. (2005) Parental perception of sleep problems in children of normal intelligence with pervasive developmental disorders: prevalence, severity, and pattern. J Am Acad Child Adolesc Psychiatry 44: 815-822.

Goldman SE, Surdyka K, Cuevas R, Adkins K, Wang L, Malow BA. (2009) Defining the sleep phenotype in children with autism. Dev Neuropsychol. 34(5), 560-73.

Kushki A, Drumm E, Pla Mobarak MTanel NDupuis AChau T, Anagnostou E. Investigating the autonomic nervous system response to anxiety in children with autism spectrum disorders. PLoS One. 2013;8(4):e59730. doi: 10.1371/journal.pone.0059730. Epub 2013 Apr 5.

Krakowiak P, Goodlin-Jones B, Hertz-Picciotto I, Croen LA, Hansen RL. (2008) Sleep problems in children with autism spectrum disorders, developmental delays, and typical development: a population-based study. J Sleep Res. 17(2):197-206.

Malow BA, Byars K, Johnson K, Weiss S, Bernal P, Goldman SE, Panzer R, Coury D, Glaze DG. A practice pathway for the identification, evaluation and management of insomnia in children and adolescents with autism spectrum disorders. Pediatrics. 2012;130 Suppl 2:S106-24.

Malow BA, Adkins KW, Reynolds A, Weiss SK, Loh A, Fawkes D, Katz T, Goldman SE, Madduri N, Hundley R, Clemons T. Parent-Based Sleep Education for Children with Autism Spectrum Disorders. J Autism Dev Disord. 2013 Jun 11.

Melke J, Goubran Botros H, Chaste P, Betancur C, Nygren G, Anckarsater H, Rastam M, Stahlberg O, Gillberg IC, Delorme R, Chabane N, Mouren-Simeoni MC, Fauchereau F, Durand C M, Chevalier F, Drouot X, Collet C, Launay JM, Leboyer M, Gillberg C, Bourgeron T. Abnormal melatonin synthesis in autism spectrum disorders. Mol Psychiatry 2008; 13(1):90-98

Reynolds AM, Malow BA. Sleep in Children with Autism Spectrum Disorders. In: Owens J, Mindell JA, Eds. Pediatric Clinics of North America 2011; 58(3):685-98.

Rossignol D, Frye R. Melatonin in autism spectrum disorders: a systemic review and meta-analysis. Developmental Medicine & Child Neurology 2011; 53(9), 783-792.

Souders MC, Mason TB, Valladares O, et al. Sleep behaviors and sleep quality in children with autism spectrum disorders.  SLEEP 2009;32:1566-1578.

Vriend, J. L., Corkum, P. V., Moon, E. C., & Smith, I. M. (2011). Behavioral interventions for sleep problems in children with autism spectrum disorders: Current findings and future directions. Journal of Pediatric Psychology, 36(9), 1017–1029.

Weiskop S, Richdale A, Matthews J. Behavioural treatment to reduce sleep problems in children with autism or fragile X syndrome. Dev Med Child Neurol. 2005;47(2):94-104.

Study: No Link Between Autism and Receiving Multiple Vaccines

by Theresa Waldron, author of

Anti-vaccine groups have been speaking out since the late 1980s against the many vaccines recommended for infants and children to prevent childhood infectious diseases. One-third of parents say they are concerned about the safety of vaccines, and one in 10 refuse or delay to vaccinate their children out of those concerns.

One of the most vocal of their worries is that vaccines are linked to autism, and that the standard 28 vaccines recommended for children from birth to age six are excessive and harmful. In fact, some anti-vaccine groups such as Generation Rescue go so far as to claim that autism is a common “side effect” of vaccines.

But in a new study published in the journal Pediatrics, researchers looked at the medical records of 256 children with an autism spectrum disorder (ASD) and 752 typically developing children who received standard vaccines from birth to age two. They wanted to see if the number of “antigens” present in the vaccines, which stimulate the body to produce antibodies to fight infection, had any correlation with the children’s risk of autism. Some anti-vaccine groups believe that the vaccine antigens are too strong for young children’s immune systems, thereby making them more susceptible to autism.

Do Children with ASD Receive more Antigens?

The researchers wanted to see if perhaps children with ASD were receiving more antigens than children without ASD. They evaluated the total antigen numbers in both groups of children by adding the number of different antigens in all vaccines each child received in one day, as well as all vaccines each child received up to 2 years of age. The researchers found that the total antigens from vaccines received by age two, or the maximum number received on a single day, was the same between children with and without ASD.

There is a contention by anti-vaccine groups that because children receive more vaccines than in previous years, they are being exposed to more antigens, and that this is what is causing autism rates to rise. Actually, current vaccines have more targeted antigens, so fewer of the antigens need to be used to be effective now than in previous years. The current vaccine schedule does recommend more vaccines now than in the late 1990s. But the maximum number of antigens by age two in a currently vaccinated child is 315 compared to several thousand in the late 1990s.

The idea that an infant or young child’s immune system is fragile and can’t handle antigens and other “immunologic stimuli,” is simply not true, the authors conclude. Babies are naturally exposed to many viruses and antigens in their everyday world.

“The possibility that immunological stimulation from vaccines during the first one or two years of life could be related to the development of ASD is not well-supported by what is known about the neurobiology of ASDs,” they write.

Zumba Mania



Get Fit! Feel Fab! Raise Funds!

(April 1, 2013—New York, NY)  The Autism Science Foundation (ASF) and Dance2BFit will host their first annual Zumba Mania, a fun and fun-draising event for families and individuals affected by autism, on April 6, 2013 at Dance2BFit Studios in Mamaroneck.

The event will raise money to fund research to find the causes of autism and develop better treatments for children, teens and adults with autism. 1 in 88 children is currently diagnosed with an autism spectrum disorder, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.

Zumba Mania will run from 12:30pm – 3:30pm at Dance2BFit at 656 Van Ranst Place, Mamaroneck, NY.  Dance2BFit owner/instructor Gustavo Lopez, a Mamaroneck native and MHS graduate, will lead the zumba-ing. Dancers 12 and over, of all developmental and skill levels, are welcome to participate.

“Let’s face it; it’s stressful being the parent of a child with autism and zumba is a fabulous stress reliever,” said Alison Singer, president of the Autism Science Foundation. “Gustavo is the best instructor I’ve ever met. It’s just impossible not to be happy when you’re doing zumba with Gustavo.”

“Everyone can zumba,” said Lopez, who became a certified zumba instructor in 2009 and opened Dance2BFit in 2012. “Whatever your age, fitness level, or developmental level, zumba is a great workout and has great health benefits.”

Tickets are $25 and available online at All advance ticket buyers will receive a free water bottle or size large t-shirt at the door. Tickets can be purchased at the door, space permitting.

Zumba is a dance fitness program created by Colombian dancer/choreographer Albert Perez. It involves dance and aerobic elements and incorporates hip-hop, samba, salsa, mambo and other dance moves.  According to Wikipedia, approximately 14 million people take weekly Zumba classes in over 140,000 locations across more than 150 countries.

100% of the proceeds from this event will benefit the Autism Science Foundation, a 501(c)(3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. ASF was founded by Scarsdale resident Alison Singer, who currently serves as president and Chief Zumba Officer.

To learn more about the Autism Science Foundation’s programs visit



Contact Information:

Casey Gold
Program Associate
Autism Science Foundation
212 391-3913

A Sibling’s Perspective

By Nick Lombardi, ASF intern

Nick Lombardi, recently recognized by the town of Greenburgh for his service to the autism community, has a younger brother with autism.

At five years old it was explained to me that my brother was going to be different.  I didn’t understand what different meant – to me he was just my three year old brother. I played with him and understood him perfectly even though he didn’t speak. He was my buddy.  

I remember how taking Joey anywhere became a major operation of enormous work and planning.  Once we arrived the challenge didn’t stop there, Joey took off his shoes and ran like the wind. The danger and stress of losing Joey was constant and so were the looks of disapproval, irritation, and sheer disgust.
My family was scolded – “Why can’t you control him?” often while we were ineffectively trying to peel Joey off the ground or holding on to him for dear life.  No matter how many times we tried to explain, the criticism never stopped. This hurt our family’s core and it hurt Joe too, it was right there on his face.
My frustration grew – others shouldn’t judge Joey.  I was nine years old when I realized my brother needed a voice, and I had to give it to him.

I designed a pin that would be clear and useful.  My message was simple and straightforward, “I’m not misbehaving I have autism please be understanding.”  I started with 6 pins.  Joey wore them everywhere and like magic, they worked!  People looked at Joey, saw the message and the tone changed.  HE HAD A VOICE!!  
Other families needed them.  I started selling them to pay for the cost.  I shared my pins and now they are in two languages and sold all over the world. I have trademarked it and have my own Facebook and web page (  and and even expanded my line with patches and tee shirts.  

I speak at many autism benefits and schools, have appeared on TV news programs and in newspapers, been listed as one of autism’s  advocates of the year with Hilary Clinton and hosted a web TV show called Siblinghood. For years I have volunteered with special needs children and been a mentor for siblings.
Joey has changed my life forever.  Joe taught me the meaning of responsibility, passion, determination, and unconditional love.  He gave me the true gift of realizing that we can’t take anything for granted.  Not even a spoken word.  I’ve also learned that I can make a difference.   

Whenever I get tired or frustrated, I think of Joey, how hard it is for him and it keeps me focused.  I’m not sure how you can thank someone for giving you all of that.  In return, I just love him and promise to always give him a voice.

I know and understand the struggles that a sibling of someone with autism goes through. The worst feeling is loneliness; the feeling that not only does no one understand you, but the feeling that there is nothing you or anyone can do to help. That, thankfully, is not at all the reality. For me, the best way to get your feelings out and find ways to deal with your problems is by going to group therapy or simply finding someone you trust to confide in and talk to about things. Parents, as much as they love us, are not the first people we run to. I felt that my parents were already overwhelmed with Joey. I couldn’t possibly put the burden of dealing with my problems on their shoulders as well. I will admit that it was a little intimidating at first.  I didn’t know what to expect. At age eight, I didn’t really talk about Joey with anyone my age who wasn’t a cousin or very close family friend. For my friends at school, autism wasn’t exactly the most frequently used word in their vocabulary.

I remember walking into my first group meeting; I was excited but scared out of my mind too. I didn’t know what the other kids would say or think about me once I told them stories about Joey and my family. However, soon enough after doing our opening introductions and starting on our first problem, I realized that this was the place for me. Everyone could relate to me and I to them. It was the first time that I truly didn’t feel isolated or judged or like I was “the kid with the weird brother.” I felt right at home with the stories of public tantrums and struggles at home. It gave me a safe place to vent and talk about the feelings that I couldn’t ever say to my parents. It was amazing; all of those feelings that I had cooped up inside of me were now in the open, in a safe place where no one thought less of me because of it.

If I have any advice for parents it is this –  make sure you attend to the needs of all of your children. Now of course I’m not a parent and I salute the efforts of parents of children with autism and other disabilities. It’s a whole level of love and commitment that can’t possibly be measured. With that being said, sometimes the needs of the “typical sibling” (a word I hate to use) can be overlooked. I’m not saying that there is a shortage of love and commitment. In fact, there is so much love that it makes it hard for some siblings to talk to their parents. We see the struggle that they go through and can’t possibly imagine putting any more pressure on them. The best thing that parents can do is ensure your son or daughter that they are free to express their feelings, even the ones that are sometimes difficult to hear. They need to feel safe and know that if they say something they won’t be judged or punished. For some siblings, however, talking to a parent directly is too hard and group therapy or even one-on-one therapy becomes the best option.

My Mission at IMFAR: To Learn and Connect with Autism Research Leaders

By Kadi Luchsinger

Kadi Luchsinger, selected by Autism Science Foundation as a 2012 IMFAR Travel Grantee, is a parent an 11 year old son with Dup15q Syndrome.

I was so pleased to have the opportunity to attend the International Meeting for Autism Research (IMFAR). I went with a mission: to meet as many people as I could and learn from them, but also to share my knowledge of Dup15q Syndrome. I’m pleased to say I accomplished my mission.

I spent a fair amount of my time at IMFAR reviewing the poster presentations. It was wonderful to see the young researchers’ excitement and to discuss their research. I wanted to know how they developed their hypothesis, how they were funded and what obstacles they encountered. It was enlightening for me to talk to those in the trenches and to gain a better understanding of the research world. As the Executive Director of Dup15q Alliance, gaining this understanding was important because our organization is moving in the direction of funding research. Speaking with some of the top experts in the field who are working on Dup15q related projects was also a priority to me.

As a science junkie, I enjoyed the keynote address by Dr. Feldman, entitled Bio-Behavioral Synchrony and the Development of Social Reciprocity. The details of her work and the videos were fascinating. She provided a great overview of the importance of relationships to children with autism, explaining it on a biochemical level. There were so many outstanding sessions, at times I felt information overload!

My favorite session was called Communicating Autism Science. The presenters focused on media training, working with the press and communicating with families. I learned about the importance of being prepared ahead of time for the press by developing three key points and practicing these points. This was a great session for me to attend as our organization is a volunteer-run parent organization and we do not have a staff to handle media relations.

In addition to research findings, I learned more about other organizations and the resources they offer in order to share resources with our members. Though I learned so much about the latest autism research, the best thing about IMFAR was meeting the leaders in the field of autism research. I made wonderful connections and learned so much from other attendees.

A Great Opportunity To Be Heard

by Jason Ross

Jason Ross is an Autistic adult working for the Autism Science Foundation. He has appeared on PBS’ “This Emotional Life” with Ami Klin. Jason blogs about neurodiversity, autistic rights, fiction, poetry, and artwork at

As an adult with autism, I am encouraging Autistic people to step up and share their voices as we continue this journey to build a better community of inclusion. Part of building that community is developing and improving services for adults with autism, which is the ultimate goal of ASF and UJA’s Adult with ASD survey. Hopefully this survey will bring us closer to autism acceptance.

I decided to join this initiative and help Autism Science Foundation with this research project because many of my Autistic friends that I have spoken with either lack services or have none at all. Autistic adults need improved services to lead easier and more fulfilled lives.
We need improved services because:

  1. Services can build our strengths- we can use our strengths to build our lives!
  2. Services can help us get jobs- Autistics need jobs too. Better services will better prepare us for employment in the future!
  3. Services can help us communicate- we need improved services in order to communicate our thoughts and feelings especially since some people think we don’t have feelings or thoughts of our own!
  4. Services can help us live inclusively in society- although social skills classes are important, most classes don’t include everything we need to know.

Autistic people face many barriers in society. Please complete the survey to help lift them. You may be eligible for the survey if you are an adult with autism or a parent or caregiver of an adult with autism. If you aren’t eligible, recommend this survey to someone who can take it.  A barrier we have always faced is not being included in helping with research that affects us. The survey being administered now will help researchers understand what works best for us and what does not. Help us help researchers do the right thing. Be heard.

Please email me at if you have any questions.

IMFAR gave me confidence to advocate for more support for women with ASD

By Melissa Shimek
Melissa Shimek, selected by Autism Science Foundation as a 2012 IMFAR Travel Grantee, is a  self-identified individual with autism.
Since attending IMFAR, I have concentrated on some ongoing activities and have taken on some new projects. Firstly, I  continue writing in my blog (as time allows) which I began before the 2012 conference. My writing has benefited from the additional information gained at IMFAR. My viewpoint is enriched and my knowledge base is expanded. I also discovered new topics for exploration. As before the conference, I am still considering continuing my education in the field of neuropsychology at a local university.
This past summer, I had the privilege of addressing a group of college-age individuals on the autism spectrum by participating in the AIM program at Mercyhurst University in Erie, PA. During the session, I was able to elaborate on many of my own experiences with newly acquired insight. Also, using what I learned at IMFAR 2012 as a resource, I kept many in attendance engaged and inquisitive. I have since been approached to be involved with the group annually and to begin work with other currently enrolled AS students at the university.
Recently, I was contacted by a local private non-profit, KaleidAScope, to assist with high school aged support group meetings. The extent of which my services will be utilized is still becoming clear and will undergo continuous change. Eventually, it may encompass more activities with individuals of all ages affiliated with this group.
Seeing a need in my community for more available supports to women on the autism spectrum, I have begun working with another local woman towards structuring reoccurring group meetings. These meetings would be open to women teenage years through adulthood looking for disclosure and understanding not available within the general public or within mixed gender meetings. We have secured a location. We are currently looking for an agreeable time and framework. By reaching out to service providers within the community, a small population of potential participants with interest/need has been expressed.
I have communicated interest as a potential participant in ongoing autism spectrum research at the University of Pittsburgh. I have submitted the initially requested documentation. Also, my family and I have completed preliminary interviews. I am hoping I will be able to volunteer my time to this project, adding an underrepresented (adult) female component to autism research. My time at IMFAR definitely energized my perception of current research in this field.
Finally and most importantly, my acquired knowledge from attending IMFAR 2012 has given me added confidence while advocating for my daughter during the drafting and implementing of her first 504 plan. I was able to clearly express my concerns and actively aid in constructing necessary accommodations and additional instructions.
The opportunity the Autism Science Foundation provided to me with a travel grant to IMFAR 2012 has unending possibilities. It was a once in a life-time experience which I am so grateful to have witnessed.
%d bloggers like this: