From Late Detection to Self-Discovery: Diagnosing Autism in Adulthood

Navigating New Horizons

Adulthood is often celebrated as a time of personal growth, independence, and achieving milestones (e.g., buying a home and career advancement). Each life experience involves responsibilities, unexpected life circumstances, and challenges that mold an individual. Amidst the whirlwind of adult life, how does one navigate an adulthood diagnosis of autism spectrum disorder (ASD)? Typically, ASD is diagnosed during childhood, where an individualized plan and support may more readily exist. While adults can achieve numerous feats, receiving an autism diagnosis in adulthood can be a validating and liberating experience.

Adulthood Autism Diagnosis Journey 

Autism is a neurodevelopmental condition categorized by challenges in two main areas: communication and interaction with others, and repeated certain behaviors or focus on particular interests.[1] Common indicators of autism include interpreting statements literally, struggling to grasp others' thoughts or words, experiencing heightened anxiety in social situations, and maintaining a strict daily routine - with anxiety arising from any alterations to it.[2] The most effective way to diagnose autism involves working with a team of licensed mental health and healthcare professionals (e.g., primary care doctor, neurologist, psychiatrist) with experience in autism. These trained professionals observe an individual's behavior and review their medical and developmental history.[3]

Behaviors consistent with autism must have manifested during childhood, making it crucial to recollect those exhibited during that period in an interview or questionnaire. The assessment can still be completed if an individual cannot recall developmental histories. Furthermore, an individual's family members can participate in the evaluation and provide developmental histories.[4] Throughout the assessment process, individuals should anticipate questions that pertain to difficulties in navigating social communication and interaction, sensory sensitivities, repetitive behaviors, and highly specific interests.[5] Following the assessment, an individual may receive a diagnosis of autism or not. If an autism diagnosis is confirmed, it is recommended to actively seek support and ongoing services, and access available resources to address any questions or concerns.

Self-Perception Before and After Diagnosis

The stigma that may accompany an autism diagnosis is often shaped by how the public interprets the observable traits of Autistic individuals. Turnock et al. (2022) notes that various factors can moderate or influence this stigma, including the extent and quality of interactions with autistic individuals, cultural influences, gender differences, personal variations, and how a diagnosis is revealed or disclosed.[6] Addressing and diminishing this stigma promotes greater awareness, simplifies the diagnosis process, and provides a more supportive environment for those with autism.[7]

A study by Leedham et al. (2019) examines the experience of 11 adult participants who received an autism diagnosis aged at, or over, 40 years.[8] The nine-question interview resulted in answers that can be categorized into themes, including: 

• a hidden condition

• the process of acceptance

• the impact of others post-diagnosis

• a new identity on the autism spectrum 

The 11 participants expressed their life experiences and self-perception before their diagnosis. Some participants stated that they internalized beliefs of being "wrong," "flawed," or "bad" because of connections that felt "failed".[9] Participants shared that they mimicked "normal" behaviors as a survival function, but that these behaviors resulted in feelings of exhaustion and unhappiness.[10]

A study by Stagg & Belcher (2019) examined 9 participants between the ages of 52 and 54 who received their autism diagnosis later in life.[11] This cohort shared similar life experiences to the Leedham et al. study, with some participants indicating they “never made friends”, social events were difficult, and they felt utterly isolated.[12] Additionally, two studies by Atherton et al. (2021) examined a total of 428 participant's life experiences to measure their quality of life relative to their diagnostic age. The correlation found that the diagnostic age later in life was associated with poorer quality of life. The participants stated painful experiences that affected their self-perception amidst sensory discomforts and recalling social miscommunications.[13]

Conversely, Leedham et al. note that after diagnosis, participants expressed feeling more free, better about themselves, less anxiety, and better self-awareness.[14] Participants indicated they had devised positive coping strategies to address anxiety and being overwhelmed. Lastly, there was a significant shift from self-judgment to self-empathy once they were aware of their diagnosis. Stagg & Belcher note that participants indicated post-diagnosis: feeling like it was a eureka moment, a complete relief, being stunned because it was not obvious to them before, and identifying that now they are viewing themselves in a different light.[15] Likewise, Atherton et al. (2021) found that their participants expressed that the diagnosis brought a sense of clarity.[16]

Value of Adulthood Autism Diagnosis

After interviewing participants diagnosed later in life, there were a few repeating challenges expressed throughout navigating the diagnostic process. These challenges included the obstacles of getting diagnosed, weighty emotional responses, and realizing the diagnosis explains the differences they recognized about themselves earlier in life.[17] The assessment's waitlist and wait times, lack of autism specialists, and the cost of care were specific obstacles highlighted in the studies. Throughout the interviews, participants noticed there was a lack of public awareness about autism, which contributed to their unmet needs. However, they could see that their autistic traits matched others with autism or the diagnosis criteria.[18] 

Participants explained that their late diagnosis was due to the lack of awareness about autism during their childhoods. Although family members had suspicions, they were unable to find explanations why their child did not appear neurotypical. Later in life, when participants received their diagnosis, they experienced relief and emotional validation. Additionally, the new diagnosis assisted participants in understanding their identity and challenges in a new light. One participant expressed that being able to articulate themselves and their diagnosis better was amazing and validating. Ghanouni & Seaker (2023) noted that although participants knew they were different from a young age, the new understanding allowed them to re-examine their previous life experiences.[19] The diagnosis allowed participants to explain their understanding of their needs and their relationships. For example, Leedham et al. (2019) explains that a participant’s partner can now take the lead in situations where they know the participant is uncomfortable, whereas in the past they might have thought their partner was simply acting awkwardly.[20] 

Understanding Co-Occurring Conditions: Autism & Comorbidities

Navigating the path to an adult autism diagnosis is a multi-faceted journey that extends well beyond receiving a single diagnosis and is rarely homogenous. Autism frequently intersects with other conditions, collectively known as co-occurring conditions or comorbidities. A recent study by Jadav and Bal (2022) delved into the correlation between the age of diagnosis and the emergence of co-occurring psychiatric conditions among adults on the autism spectrum.[21] They found that adults who received their autism diagnosis at the age of 21 or older reported significantly higher rates of anxiety disorders, depression, and dysthymia than those diagnosed before the age of 21.

These findings underscore the importance of comprehending the impact of various psychiatric conditions on the lives of adults with autism. In particular, life experiences (e.g., enduring societal exclusion, grappling with a diminished self-image, and enduring bullying) can significantly contribute to the prevalence of depression and anxiety disorders among this population.[22] Furthermore, the study highlights that generational mental health stigmas and a lack of awareness can influence the timing and willingness of adults to seek a diagnosis. According to Barlattani (2023), ADHD has the highest prevalence among psychiatric comorbidities in autism, followed by anxiety disorders. 70% of people with autism experience one comorbid psychiatric disorder, increasing the need to adapt and implement diagnostic tools for adults with autism.[23] Thus, acquiring a proper and valid diagnosis proves invaluable by offering autistic individuals of all ages significant benefits, especially for those experiencing comorbid conditions.

If you or someone you know has or suspects that they have Autism Spectrum Disorder, please reach out to a licensed mental health professional (e.g., a psychotherapist, psychologist or psychiatrist) for additional guidance and support. Note: the University of Washington’s UW Autism Center offers many resources and provider options.

Contributed by: Kelly Valentin

Editor: Jennifer (Ghahari) Smith, Ph.D.

references

1 Ghanouni, P., & Seaker, L. (2023). What does receiving autism diagnosis in adulthood look like? Stakeholders’ experiences and inputs. International Journal of Mental Health Systems, 17(1). https://doi.org/10.1186/s13033-023-00587-6

2 Signs of autism in adults. (2023, March 8). nhs.uk. https://www.nhs.uk/conditions/autism/signs/adults/

3 Ghanouni & Seaker (2023)

4 Autism spectrum Disorder. (n.d.). National Institute of Mental Health (NIMH). https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd

5 Ibid.

6 Turnock, A., Langley, K., & Jones, C. R. G. (2022). Understanding Stigma in Autism: A Narrative review and Theoretical model. Autism in Adulthood, 4(1), 76–91. https://doi.org/10.1089/aut.2021.0005

7 Ibid.

8 Leedham, A., Thompson, A. R., Smith, R., & Freeth, M. (2019). ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism, 24(1), 135–146. https://doi.org/10.1177/1362361319853442

9 Ibid.

10 Ibid.

11 Stagg, S. D., & Belcher, H. (2019). Living with autism without knowing: receiving a diagnosis in later life. Health Psychology and Behavioral Medicine, 7(1), 348–361. https://doi.org/10.1080/21642850.2019.1684920

12 Leedham, A., Thompson, A. R., Smith, R., & Freeth, M. (2019). ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism, 24(1), 135–146. https://doi.org/10.1177/1362361319853442

13 Atherton, G., Edisbury, E., & Piovesan, A. (2021). Autism Through the Ages: A Mixed methods approach to understanding how age and age of diagnosis affect quality of life. Journal of Autism and Developmental Disorders, 52(8), 3639–3654. https://doi.org/10.1007/s10803-021-05235-x

14 Leedham et al., (2019)

15 Stagg & Belcher (2019)

16 Atherton et al., (2021)

17 Ghanouni & Seaker (2023)

18 Ibid.

19 Ibid.

20 Leedham et al., (2019)

21 Jadav, N., & Bal, V. H. (2022). Associations between co‐occurring conditions and age of autism diagnosis: Implications for mental health training and adult autism research. Autism Research, 15(11), 2112–2125. https://doi.org/10.1002/aur.2808

22 Ibid.

23 Barlattani, T. (2023). Autism spectrum disorders and psychiatric comorbidities: a narrative review. Journal of Psychopathology. https://doi.org/10.36148/2284-0249-N281

Clearing up Misconceptions about Autism

The Self-Diagnosing Phenomena 

The Internet has made a wide variety of information easily accessible, including medical information. There is a multitude of information circulating the web geared towards people interested in better understanding medical conditions and learning about new advancements in health. As a result of more accessible medical information online, self-diagnosis of health conditions has grown substantially.[1] The Health Online study by the Pew Research Center (2013) surveyed 3,014 adults and found that more than one-third of US individuals use the Internet to self-diagnose.[2] A more recent survey in 2019 by LetsGetChecked found that 65% of the 2,000 adults surveyed used the internet to self-diagnose.[3] These findings were further supported by a study by Fox and Duggan (2013) stating that roughly 70% of American adults consult the Internet for medical information.[4] 

This self-diagnosing phenomenon also applies to Autism Spectrum Disorder (ASD), with adults increasingly self-identifying as autistic using online resources (e.g., online questionnaires, information found on social media).[5] Studies by Au-Yeung et al. (2019) and Lewis (2017) identified a multitude of reasons why adults turn to self-diagnosing ASD instead of receiving a formal diagnosis from a licensed professional.[6,7] The reasons found for self-diagnosing include: difficulties verbalizing to healthcare professionals why they felt they could be autistic, fear of being disbelieved, previous experience being misdiagnosed, and the belief that there is a lack of awareness and understanding of ASD in healthcare.[8,9] 

However, self-diagnosing does not provide all the benefits of a formal diagnosis. Overton et al. (2023) report that without a proper diagnosis, autistic individuals and their significant others are less likely to receive the support and social recognition they deserve.[10] The study adds that a formal autism diagnosis can help autistic adults better understand who they are, receive services and support (e.g., reasonable adjustments at work or in education, access to treatment), and assist in positively reframing their new identity.[11] Another benefit of a formal diagnosis of Autism Spectrum Disorder is that a licensed professional would be more equipped to rule out other causes for an individual's symptoms, thus reducing the likelihood of a misdiagnosis.[12] ASD is considered a “spectrum” due to the wide variety of symptoms and severity associated with the condition. Furthermore, since many disorders present with similar/overlapping symptoms, self-misdiagnosis is easy to occur.[13] For example, an individual may have disordered sensory processing that results in them being overly sensitive to loud noises without having Autism Spectrum Disorder.

Understanding Stimming 

According to research conducted by Sheppard et al. (2016), neurotypical people tend to misinterpret the actions of those who are on the spectrum.[14] For instance, neurotypical people may mistake a lack of eye contact as disinterest in a conversation. Such misunderstandings can add to the difficulties autistic individuals often face in social situations. A clearer understanding of what autistic people are feeling and exhibiting can help both neurotypical and autistic people better communicate effectively together.

Stimming is the action of repetitive motor movements or vocalizations, and is considered a core feature of diagnosing ASD.[15] Children with ASD may stim in response to overstimulation, under-stimulation, pain, positive or negative emotions, and as a method of self-regulation.[16] Autistic adults have reported that stimming provides a soothing rhythm that helps them cope with overstimulation and the resultant distress, helping them manage uncertainty and anxiety.[17] Despite the necessity of stimming to invoke self-soothing during difficult times, a study by Kapp et al. (2019) on autistic adults revealed that participants felt negative emotions (e.g., anger, nervousness, belittlement, shame, confusion) when told by others to “stop stimming”.[18] Furthermore, many attempted to suppress their stims in public in order to avoid negative attention.[19] 

The attempt to suppress regulatory behavior is called "masking," and it is not unique to individuals with ASD (e.g., when around others, a nervous neurotypical person may suppress biting their nails as a method of masking). Miller et al. (2021) found that both autistic and neurotypical people found masking made them feel exhausted, unhappy, and as if people did not know the “real” them.[20] However, individuals with ASD experienced more severe adverse reactions, stating that masking sometimes makes them feel suicidal.[21] 

Stimming can be a great outlet for individuals with Autism Spectrum Disorder to deal with overwhelming environments or emotions. Therefore, it is understandable that masking stims can create adverse reactions. However, stimming, like all symptoms of ASD, has a spectrum of severity. Some stims can interfere with the individual's learning or even be self-harming; thus, reducing severe stims can often bring more benefit than harm.[22] 

The Child Mind Institute offers some methods to reduce the need for one’s stimming: [23]

• Get a medical exam to eliminate the possibility of physical causes for stims in a non-verbal individual (e.g., ear infections, chronic pain, migraines).

• Manage the sensory environment and emotional environment to maximize personal comfort.

• Vigorous exercise reduces the need to stim, likely because exercise is associated with beta-endorphins, just like stimming.

Specific interventions for children include:

• Continue interacting while stimming occurs. In his book Communicating Partners, licensed speech and language therapist, James MacDonald, suggests that individuals with autism tend to perceive the world through sensation and action, while most neurotypicals perceive through thought and language. Once this difference is understood, self-stimulatory behaviors make sense. MacDonald recommends turn-taking activities to engage a child without trying to stop stimming during the activity; the activity will gradually become increasingly comfortable and attractive, naturally reducing the stim.

• Create a positive association between stimming and relationship-building. One way to use stimming as a productive part of the learning process is to allow stimming as a reinforcer or reward after a period of playful interaction or work. Julia Moor writes in her book Playing, Laughing and Learning With Children on the Autism Spectrum that making time for stimming will allow the child the comfort of being themself, encourage more interactions, and actually reduce the total number of hours per day spent stimming.

• Join the stim! Some treatment programs, including Son-Rise and Floortime, propose joining in the self-stimulatory behaviors as a relationship-therapy to strengthen the bond between parent and child. 

Navigating Social Spaces with ASD

ASD is often associated with the social-communicative challenging part of the disorder, which may fuel the misconception that people with autism are antisocial or do not want to form friendships. In actuality, individuals with ASD regularly express a strong desire for friendships and, according to a meta-analysis by Mendelson et al. (2016) on 8-12 year old boys, those with ASD had at least one friend who reciprocates the friendship.[24,25] However, the study also found that the friendships of children with ASD were fewer in number and lower in quality than those of their neurotypical peers,[26] which may be due to critical differences in how someone with ASD views friendship. 

Similarly to neurotypical peers, individuals with ASD want to feel a sense of belonging; thus, they want to experience the feeling of security and support when a person is valued for their authentic self.[27] On the other hand, Finke et al. (2023) found that individuals with ASD have particular preferences for modes of friendships.[28] Their study showed that 60% of autistic young adults would rather talk on the phone to make arrangements (i.e., have a specific purpose) than to simply chat and that 75.5% preferred to meet up with friends to participate in a specified activity over meeting up to hang out or chat.[29] These findings are consistent with a previous study by Finke et al. (2019) that found autistic young adults preferred less emotionally intense friendships (e.g., a friend to have fun with instead of confiding problems) and required less physical proximity than their neurotypical peers.[30]

ASD Causes

The Mayo Clinic notes there was a recent misconception that vaccines were causing ASD, based on a small study conducted in 1998.[31] The study underwent further review and was retracted, with the author losing their medical license due to using falsified information.[32] Furthermore, there have been numerous follow-up studies performed that debunked a connection between autism and the measles, mumps, and rubella (MMR) vaccine.[33] While scientists have not found a specific cause for Autism Spectrum Disorder, several factors (not vaccines) are believed to contribute. The National Alliance on Mental Illness (NAMI) states that genetics, biological dysfunction (e.g., abnormalities in brain structures or chemical functions), and prenatal factors (e.g., mother's health) may contribute to the development of ASD.[34] 

Diagnosing Autism Spectrum Disorder

Licensed professionals (e.g., psychologists, pediatricians, neurologists) with experience working with the wide array of symptoms associated with ASD can deliver a formal diagnosis.[35] A proper medical diagnosis of Autism Spectrum Disorder is based on the following criteria by the American Psychiatric Association:[36]

• Currently has or has had persistent deficits in social communication and interaction across multiple contexts in the following areas:

• Social-emotional reciprocity (e.g., failure of normal back-and-forth conversation, reduced sharing of interests or emotions, failure to initiate or respond to social interactions).

• Nonverbal communicative behaviors (e.g., poorly integrated verbal and nonverbal communication, abnormalities in eye contact and body language, total lack of facial expressions and nonverbal communication).

• Deficits in developing, maintaining, and understanding relationships (e.g., difficulties adjusting behavior to suit various social contexts, difficulties in sharing imaginative play or in making friends).

• Currently has or has had restricted, repetitive patterns of behavior, interests, or activities in at least two of the following areas:

• Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia).

• Insistence on sameness (e.g., extreme distress at small changes, rigid thinking patterns, greeting rituals, need to take the same route or eat the same food every day).

• Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

• Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

The American Psychiatric Association adds that the symptoms must be present in early development (although learned strategies or low social demands may mask the symptoms until later in life), and the symptoms cause a functional impairment and are not better explained by an intellectual disability or global developmental delay.[37]

The diagnostic manual has stayed relatively consistent since its release in 2013. However, there was a recent revision to create a new DSM-5-TR to ease clinicians in the diagnostic process and remove ambiguity. The new text clarifies that an individual must manifest all of the social communication and social interaction deficits and now makes it possible for clinicians to indicate co-occurring problems (e.g., self-injury) that do not rise to the level of a disorder.[38] There are a multitude of diagnostic exams for ASD to help capture an individual's unique presentation of the disorder across various symptoms and ages. 

ASD diagnostic tests include:[39,40]

• Autism Diagnostic Interview-Revised (ADI-R) is an extended structured interview conducted with a caregiver to obtain the developmental history and current behaviors of an individual aged 2 years or older. The test focuses on the functional domains: language/communication, reciprocal social interactions, and restricted, repetitive, and stereotyped behaviors and interests.

• Autism Diagnostic Observation Schedule (ADOS) quantifies ASD severity with relative independence from age and IQ across age span, developmental levels and language skills. 

• Aberrant Behavior Checklist (ABC) can be used for individuals between 5 and 54 years of age to evaluate maladaptive behaviors. It tests the subscales of irritability, agitation, crying, lethargy, social withdrawal, stereotypic behavior, hyperactivity, noncompliance, and inappropriate speech. 

• Childhood Autism Rating Scale Second Edition (CARS2) is a behavior rating with two forms used to identify and distinguish children with ASDs from other developmental disorders, as well as determine ASD symptom severity. 

• Child Behavior Checklist (CBCL) is a standard measure of externalizing (e.g., aggressive, hyperactive, noncompliant, and under controlled) and internalizing (e.g., anxious, depressive, and overcontrolled) behavior problems. 

• Vineland-II Adaptive Behavior Scales (VABS) tests for adaptive function in children less than 6 years old. VABS consists of four major domains: communication, socialization, daily living skills, and motor skills. 

• The Social Responsiveness Scale (SRS) assesses the severity of symptoms associated with ASDs along a continuum for children aged 4-18 years. SRS provides a picture of a child's social impairment by assessing social awareness, social information processing, capacity for reciprocal social communication, social anxiety/avoidance, and autistic preoccupations and traits.

• Repetitive Behavior Scale-Revised (RBS-R) measures both the presence and severity of repetitive behavior and provides a continuous measure of the full spectrum of repetitive behaviors for children. 

• Modified Checklist for Autism in Toddlers (M-CHAT) is a list of informative questions about a child where the answers can show whether a specialist should further evaluate them.

• Screening Tool for Autism in Two-Year-Olds (STAT) is a set of tasks children perform to assess key social and communicative behaviors, including imitation, play, and directing attention. 

• Social Communication Questionnaire (SCQ) is a series of questions to determine if further testing is needed for a child aged 4 years or older.

• Communication and Symbolic Behavior Scales (CSBS) uses parent interviews and direct observation of natural play to collect information on communication development, including gestures, facial expressions, and play behaviors. 

It is important to note that while some diagnostic exams can be found online, accurate interpretation of the exam scores can only be done by licensed professionals trained in using the diagnostic tool.

If you think you or someone you know may have Autism Spectrum Disorder, please reach out to a licensed mental health professional (e.g., a psychotherapist, psychologist, or psychiatrist) for additional guidance and support. Note: the University of Washington’s UW Autism Center offers many resources and provider options.

Contributed by: Maria Karla Bermudez

Editors: Jennifer (Ghahari) Smith, Ph.D. & Priyanka Shokeen, Ph.D.

References

1 Hochberg, I., Allon, R., & Yom-Tov, E. (2020). Assessment of the Frequency of Online Searches for Symptoms Before Diagnosis: Analysis of Archival Data. Journal of medical Internet research, 22(3), e15065. https://doi.org/10.2196/15065

2 Kuehn BM. More than one-third of US individuals use the internet to self-diagnose. J Am Med Assoc 2013 Feb 27;309(8):756-757

3 Kingston, H. (2019, December 31). LetsGetChecked survey reveals need for better thyroid health awareness. LetsGetChecked. https://www.letsgetchecked.com/articles/letsgetchecked-survey-reveals-need-for-better-thyroid-health-awareness/ 

4 Fox S, Duggan M. Pew Internet - Pew Research Center. 2013. Health Online 2013   URL: https://www.pewinternet.org/wp-content/uploads/sites/9/media/Files/Reports/PIP_HealthOnline.pdf

5 Overton, G.L., Marsà-Sambola, F., Martin, R. et al. Understanding the Self-identification of Autism in Adults: a Scoping Review. Rev J Autism Dev Disord (2023). https://doi.org/10.1007/s40489-023-00361-x

6 Au-Yeung, S. K., Bradley, L., Robertson, A. E., Shaw, R., Baron-Cohen, S., & Cassidy, S. (2019). Experience of mental health diagnosis and perceived misdiagnosis in autistic, possibly autistic and non-autistic adults. Autism, 23(6), 1508–1518. https://doi.org/10.1177/1362361318818167

7 Lewis, L. F. (2017). A mixed methods study of barriers to formal diagnosis of autism spectrum disorder in adults. Journal of Autism and Developmental Disorders, 47, 2410–2424. https://doi.org/10.1007/s10803-017-3168-3

8 Au-Yeung et al. (2019)

9 Lewis (2017)

10 Overton et al. (2023)

11 Ibid.

12 What are the problems with self-diagnosing autism?. Forta Health (2022, May 9). https://www.fortahealth.com/resources/problems-with-self-diagnosing-autism 

13 Ibid.

14 Sheppard E., Pillai D., Wong G. T. -L., Ropar D., Mitchell P. (2016). How easy is it to read the minds of people with autism spectrum disorder? Journal of Autism and Developmental Disorders, 46, 1247–1254

15 Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E., & Russell, G. (2019). 'People should be allowed to do what they like': Autistic adults' views and experiences of stimming. Autism : the international journal of research and practice, 23(7), 1782–1792. https://doi.org/10.1177/1362361319829628

16 Wang, K. (2022, December 6). Autism and Stimming. Child Mind Institute. https://childmind.org/article/autism-and-stimming/ 

17 Kapp et al. (2019)

18 Ibid.

19 Ibid.

20 Miller, D., Rees, J., & Pearson, A. (2021). "Masking Is Life": Experiences of Masking in Autistic and Nonautistic Adults. Autism in adulthood : challenges and management, 3(4), 330–338. https://doi.org/10.1089/aut.2020.0083

21 Ibid.

22 Wang (2022)

23 Ibid. 

24 Bauminger, N., & Kasari, C. (2000). Loneliness and friendship in high-functioning children with autism. Child Development, 71, 447–456. https://doi.org/10.1111/1467-8624.00156

25 Mendelson, J. L., Gates, J. A., & Lerner, M. D. (2016). Friendship in school-age boys with autism spectrum disorders: A meta-analytic summary and developmental, process-based model. Psychological bulletin, 142(6), 601–622. https://doi.org/10.1037/bul0000041

26 Ibid.

27 Finke, E. H., McCarthy, J. H., & Sarver, N. A. (2019). Self-perception of friendship style: Young adults with and without autism spectrum disorder. Autism & Developmental Language Impairments, 4, Article 2396941519855390. https://doi.org/10.1177/2396941519855390

28 Finke, E.H. The Kind of Friend I Think I Am: Perceptions of Autistic and Non-autistic Young Adults. J Autism Dev Disord 53, 3047–3064 (2023). https://doi.org/10.1007/s10803-022-05573-4

29 Ibid.

30 Finke et al. (2019)

31 LeGare, J. (2022, March 24). Autism-vaccine link debunked. Mayo Clinic Health System. https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/autism-vaccine-link-debunked 

32 Ibid.

33 Ibid.

34 Autism. NAMI. (n.d.). Retrieved March 6, 2023, from https://www.nami.org/Learn-More/Mental-Health-Conditions/Related-Conditions/Autism#:~:text=Children%20with%20autism%20can%20also,conditions%20than%20children%20without%20autism 

35 American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.

36 Ibid.

37 Ibid. 

38 Hess, P. (2022, March 17). DSM-5 revision tweaks autism entry for clarity. Spectrum. https://www.spectrumnews.org/news/dsm-5-revision-tweaks-autism-entry-for-clarity/ 

39 Payakachat, N., Tilford, J. M., Kovacs, E., & Kuhlthau, K. (2012). Autism spectrum disorders: a review of measures for clinical, health services and cost-effectiveness applications. Expert review of pharmacoeconomics & outcomes research, 12(4), 485–503. https://doi.org/10.1586/erp.12.29

40 Learn the signs of autism. Autism Speaks. (n.d.). Retrieved March 6, 2023, from https://www.autismspeaks.org/signs-autism 

The Hidden Social Struggles of Face Blindness

Navigating a Faceless World

“Being face blind means living in a world full of strangers…It’s actually a source of constant anxiety,” writes The Washington Post’s face-blind writer, Sadie Dingelder.[1] For people with prosopagnosia, or face blindness (a rare neurological disorder affecting nearly 3% of the population), social situations are complicated to navigate as the brain’s facial recognition system is flawed.[2] In humans, the face serves as a reminder for many memories of the identity of a person: such as their favorite food and their hobbies. When someone’s brain does not properly process this key component of social behavior, social anxiety quickly results. Prosopagnosia not only affects an individual's ability to recognize faces but also poses significant mental health challenges, impacting social interactions, self-esteem, and emotional well-being. 

Being face blind leads to an impairment in the ability to form identities, while other forms of identification (i.e., non-facial) are relied upon. Prosopagnosia tends to go relatively unnoticed not only because of its rarity but also because those who have it are skillful at working around their disability[3] or hiding it.  Additionally, recruitment for research on the subject becomes difficult, as those who have it may not always be aware if they have grown accustomed to having this deficit.[4] Additional research into prosopagnosia will provide vast opportunities to learn more about the social-cognitive disorders and mechanisms of the brain (such as autism spectrum disorder).

What is Face Blindness?

The main purposes of the brain’s visual facial recognition system revolve around sorting socially-meaningful information based on familiarity, attractiveness, and emotion.[5] Lopatina et al. (2018) note that face recognition impairment has been found to be associated with problems with neurons in the temporal lobe and/or the fusiform face area, particularly in the right middle fusiform gyrus.[6] Associations made with these areas are activated with other brain areas in forming/retrieving memories (the hippocampus) and emotion (the amygdala), establishing the interaction between facial recognition and social operation.[7] Essentially, visual information about faces cannot be translated into meaning. Additionally, face-selective neurons found in the amygdala support the notion that the brain uses facial recognition for emotionally salient, or meaningful stimuli.[8] The own-race bias of having better familiarity/encoding for faces of one’s own ethnicity rather than external ones can also be attributed to the brain’s facial recognition system.[9] When this system in the fusiform face area is impaired in individuals with prosopagnosia, so are the subsequent social processes. Prosopagnosia falls into two forms:[10]

1. Associative Prosopagnosia - One can perceive a face normally, but meaning cannot be applied. Even if the person is familiar, they can only be recognized in other ways (e.g., the sound of their voice, the way they walk).

2. Apperceptive Prosopagnosia - Faces are abnormally perceived and their facial expressions or other non-verbal cues cannot be recognized.

Causes for prosopagnosia can be related to genetic variants,[11] stroke, traumatic brain injury, tumors or some neurodegenerative diseases.[12] Prosopagnosia can often be found in individuals with autism (ASD) and Asperger’s Syndrome due to similar cognitive-emotional processes being affected.[13] Due to the similarity of brain areas and social behaviors affected by these neurological disorders, research targeting prosopagnosia has led to a multitude of information on the topic that augments our understanding of neural development and socially-debilitating disorders.

The Emotional Toll 

Davis et al. (2010) found that social anxiety (fears related to social rejection and social impressions) can stem from not only an inability to recognize facial expressions, but also from that of facial identity.[14] With impaired facial identification, those with prosopagnosia experience high social stress and anxiety in situations that critically involve communication, such as with family, at work and in public settings. The impairment can be so socially debilitating that it interferes with self-esteem and emotional well-being, resulting in difficulties in forming relationships and feelings of social isolation.[15] Having face blindness may also lead to avoidance of socially-engaging situations as a coping mechanism, which can even be considered a phobia in extreme cases.[16] Dalrymple et al. (2014) note that this deficit can begin early in life, as children who experience developmental prosopagnosia (DP) report discomfort and distress.[17] Guyer et al. (2010) add that emerging depression is also associated with facial memory deficits.[18] 

Coping Strategies and Treatment

Often, those with face blindness will develop coping strategies to alleviate daily challenges. Dalrymple et al. (2014) found that strategies to mitigate distress in children included asking a person’s name and remembering non-facial elements of a person’s appearance such as jewelry or hair.[19] Behavioral strategies like this are employed in face-blind-oriented training to facilitate the memory of people’s facial shapes and features.[20] These memory practices cannot cure prosopagnosia but can provide ways for individuals to adapt to social environments that require identification, thereby reducing social stress.[21] Lopatina et al. (2018) and Bate et al. (2014) also found that administering oxytocin (a hormone that facilitates human bonding)[22] can alleviate difficulties with social communication - some effectiveness was also noted in facilitating facial recognition in people with social behavioral deficits.[23,24] In addition, psychotherapeutic modalities such as cognitive behavioral therapy (CBT) may be utilized alone or in conjunction with anti-anxiety medication to mitigate the effects of social anxiety.[25]

This rare condition provides important insight into connections between the brain and social behavior. While the deficits in the brain associated with face blindness are not curable, an effort to develop identification strategies will help those with facial recognition difficulties in reducing high stress and anxiety when interacting with other people. 

If one feels as though they are experiencing symptoms of prosopagnosia (face blindness) or forms of social anxiety, please reach out to a licensed mental health professional (e.g., a psychotherapist, psychologist or psychiatrist) for guidance and support.

Contributed by: Phoebe Elliott

Editor: Jennifer (Ghahari) Smith, Ph.D.

References

1 Dingfelder, S. (2019, August 21). My Life With Face Blindness. The Washington Post Magazine. https://www.washingtonpost.com/news/magazine/wp/2019/08/21/feature/my-life-with-face-blindness/ 

2 Ibid. 

3 Ibid. 

4. Ibid. 

5. Lopatina, O. L., Komleva, Y. K., Gorina, Y. V., Higashida, H., & Salmina, A. B. (2018). Neurobiological Aspects of Face Recognition: The Role of Oxytocin. Frontiers in Behavioral Neuroscience, 12, 399601. https://doi.org/10.3389/fnbeh.2018.00195 

6 Ibid. 

7 Ibid. 

8 Ibid. 

9 Blandón-Gitlin, I., Pezdek, K., Saldivar, S., & Steelman, E. (2014). Oxytocin eliminates the own-race bias in face recognition memory. Brain Research, 1580, 180-187. https://doi.org/10.1016/j.brainres.2013.07.015 

10 Cleveland Clinic. (2022, July 7). Prosopagnosia (Face Blindness). https://my.clevelandclinic.org/health/diseases/23412-prosopagnosia-face-blindness

11 Ibid. 

12 National Institute of Neurological Disorders and Stroke. (2023) Prosopagnosia. https://www.ninds.nih.gov/health-information/disorders/prosopagnosia#:~:text=What%20is%20prosopagnosia%3F,and%20%E2%80%9Clack%20of%20knowledge.%E2%80%9D

13 Ibid. 

14 Davis, J. M., McKone, E., Dennett, H., & Palermo, R. (2010). Individual Differences in the Ability to Recognise Facial Identity Are Associated with Social Anxiety. PLoS ONE, 6(12). https://doi.org/10.1371/journal.pone.0028800

15 Ibid. 

16 Davis et al. (2010)

17 Dalrymple, K. A., Fletcher, K., Corrow, S., S. Barton, J. J., Yonas, A., & Duchaine, B. (2014). “A room full of strangers every day”: The psychosocial impact of developmental prosopagnosia on children and their families. Journal of psychosomatic research, 77(2), 144. https://doi.org/10.1016/j.jpsychores.2014.06.001

18 E. Guyer, D. A., R. Choate, M. V., J. Grimm, D. K., S. Pine, D. D., & Keenan, D. K. (2011). Emerging depression is associated with face memory deficits in adolescent girls. Journal of the American Academy of Child and Adolescent Psychiatry, 50(2), 180. https://doi.org/10.1016/j.jaac.2010.11.008

19 Dalrymple et al. (2014)

20 Cleveland Clinic

21 Ibid.

22 Jones, C., Barrera, I., Brothers, S., Ring, R., & Wahlestedt, C. (2017). Oxytocin and social functioning. Dialogues in clinical neuroscience, 19(2), 193–201. https://doi.org/10.31887/DCNS.2017.19.2/cjones 

23 Lopatina et al. (2018)

24 Bate, S., Cook, S. J., Duchaine, B., Tree, J. J., Burns, E. J., & Hodgson, T. L. (2014). Intranasal inhalation of oxytocin improves face processing in developmental prosopagnosia. Cortex, 50, 55-63. https://doi.org/10.1016/j.cortex.2013.08.006 

25 Johns Hopkins Medicine. (n.d.) Phobias. www.hopkinsmedicine.org/health/conditions-and-diseases/phobias

Autism Diagnosis & Treatment: Understanding Racial Disparities

Diagnostic Symptoms & Patterns 

Autism Spectrum Disorder (ASD) is a neurological developmental disability that causes individuals to have lifelong difficulties in communication, interpretation and behavior. ASD is most commonly referred to as a developmental disorder because symptoms first appear within the first two years of a person’s life.[1] Commonly observed ASD symptoms within a child’s first 24 months include:[2]

- Limited social interaction (avoiding eye contact, disinterest in interactive games)

- Repetitive behaviors (playing with the same toy, having obsessive interests) 

-Delayed language and/mobility 

-Mood or emotional reactions that deviate from the norm

-High comorbidity with anxiety, depression, and attention-deficit hyperactivity disorder (ADHD)

As a spectrum disorder, it is common to see different combinations and severities of ASD symptoms in each diagnosed person. Regardless of which symptoms manifest in a person, treatment typically still has the potential to effectively mitigate some of ASD’s long-term challenges. With proper intervention and therapy, adults with ASD are often capable of achieving significant autonomy and social integration.[3] But, early detection is crucial. The American Academy of Pediatrics recommends that all children receive “well-child visits” (including screening for autism) at 18 and 24 month appointments; the sooner a child with symptoms receives an accurate screening, the sooner they are able to begin effective intervention and treatment.[4] Through assessment methods such as observation, blood tests and interactive tests, the accuracy of ASD assessments continues to improve - thus improving the odds of developmental and social progress in children with ASD.[5] 

In 2023, there was a groundbreaking shift in autism diagnosis statistics: for the first year in U.S. history, Black and Hispanic youth were diagnosed at a higher rate than their White counterparts.[6] This comes after decades of underrepresentation of autism in minority populations. However, understanding racial differences in access, culture and environment among marginalized communities provides insight into the progress required to see continual improvements in ASD disparities.

Early Assumptions 

When Leo Kanner first published his observations in 1943, he referred to this condition as “early infantile autism” and asserted that it occurred most often in children belonging to White middle and upper-class families.[7] Unfortunately, Kanner overlooked the reality that the parents who could typically seek help regarding their child’s developmental problems were likely those with resources, privilege and access to appropriate healthcare. In the 1940s those parents were almost exclusively White, and decades later White children continue to have disproportionate access to autism treatment and resources.[8,9] Research from the Center for Disease Control (CDC) has since established that ASD has no disposition toward a particular ethnic group, so factors other than biological differences contribute to White American children receiving the quickest and most frequent ASD diagnosis of all socioeconomic groups.[10] 

ASD in Black Children

According to a 2017 study conducted by the American Journal of Public Health, Black children are 19 percent less likely than their White counterparts to receive an autism diagnosis.[11] Similarly to other health disparities in America, high poverty rates and limited access to treatment facilities contribute to autism’s underdiagnosis in Black Americans. Research continues to identify racism as one of the greatest determinants in a person’s long-term health.[12] It is estimated that Black Americans live four years less than their White counterparts from compounding issues that contribute to a poorer quality of life (e.g., Black Americans are under-represented in higher income jobs and have a disproportionately high rate of chronic diseases in comparison to their White counterparts).[13] 

Addressing this socioeconomic gap is crucial to improving Black Americans’ ASD diagnosis. Research conducted between 2002 and 2010 on the prevalence of autism in White, Black and Hispanic children found autism diagnosis was higher in high socioeconomic Black Americans than their counterparts. Therefore, diminishing socioeconomic differences is key to improving ASD diagnosis for all Black Americans, who remain the demographic with the lowest average annual income in America.[14,15] 

Diagnosis issues also tend to arise when Black families seek autism treatment facilities with concerns. The majority of school documentation of ASD children identifies the child’s history as “bad behavior” instead of a developmental disorder.[16] A 2007 study conducted at the University of Pennsylvania found that Black children with ASD are 5.1 times more likely to be misdiagnosed with behavior disorders before they are correctly diagnosed with autism.[17] Another 2007 study found that African-American children were 5.1 times more likely than White children to receive a diagnosis of adjustment disorder, and 2.4 times more likely to receive a diagnosis of conduct disorder.[18] 

Racist stigmas labeling Black children as rude, unruly, and aggressive also extends to teachers. A 2020 American Psychological Association study on 178 prospective teachers across universities in southeastern states revealed that the majority of teachers within the study inaccurately observed anger in both genders of Black children at higher rates than of White children. The implications of this study extend to autism: teachers and other school administrators (e.g., school psychologists) play an instrumental role in referring children for further behavioral assessments.[19]

ASD in Hispanic Children

In past decades, Hispanic children were diagnosed at an average 65% lower rate than their White counterparts.[20] Recent strides in autism awareness within the Hispanic community have contributed to their improvements in ASD diagnosis, but there are still improvements to make in resources, treatment accessibility and awareness. Similarly to Black children, Latino children often have delayed diagnoses caused by low socioeconomic standings and limited accessibility to treatment and resources.

Spanish is also the second highest primary language spoken in the U.S, and is a factor that has been identified as both a barrier to identifying ASD and a communication challenge between parents and healthcare providers. In a 2004 study by Shapiro et al. 16 young, low-income Hispanic mothers described feelings of “alienation” in their interactions with healthcare providers.[21] The mothers described how information was not always explained enough and if a translator is not present, they felt as though they missed a lot of information.[22] Another study conducted in 2016 by Steinberg et al. found that Spanish-speaking parents are often asked less about their developmental concerns even if their child is known to be at risk, and have reported trouble connecting with providers because they are treated as though they lack knowledge.[23] These experiences not only dissuade parents from asking questions, but also intensify a caregiver’s skepticism, as families with limited English proficiency report less trust in providers compared to English proficient families.[24]

Emerging solutions to disparities in ASD diagnosis/treatment

There are growing resources available to help families from underrepresented communities better understand and identify ASD in their children, aiding in diagnosis and treatment and help close these racial disparities. 

• The Autism Society of Los Angeles (ASLA) runs a hotline at (424) 299-1531 to help parents navigate the diagnosis and healthcare landscape. This organization also offers services in English and Spanish, providing families the resources they need without a financial burden.[25]

• The Children's Hospital, Los Angeles employs liaisons to connect families to further assessment, locate other treatment facilities and gain general support. This hospital is physically located in Los Angeles, and it also provides a virtual autism assessment that can be accessed at: https://chla.purview.net/patient/start.

• “Autism in Black” is a non-profit that aims to provide support to black parents who have a child on the spectrum, through educational and advocacy services like podcasts, free consultations and  hosting outreach events to better educate local communities. Managed by licensed mental health providers, “Autism in Black” is grounded in a mission to improve awareness of and reduce the stigma associated with ASD in the Black community.[26]

• The Center for Disease Control (CDC) has a “Learn the Signs. Act Early.” program that provides free resources in English and Spanish to monitor children’s development starting at 2 months of age. Additionally, by downloading the CDC’s free Milestone Tracker mobile app, caregivers can log and monitor their child’s behavior to later share with healthcare providers.[27]

Community-based Intervention for ASD

JAMA Pediatrics (2022) conducted analysis of decades of autism studies and found that compounding factors increase the likelihood of early morbidity for individuals with autism in comparison to the general population as well as for minorities in comparison to their White counterparts.[28] Under this consideration, marginalized individuals with ASD are uniquely vulnerable to compounding issues related to how they must navigate the world due to their racial identity and neurodivergence (e.g., non-verbal communication, self-harming, and dependence on a caretaker).[29]

 People of color have a higher likelihood of limited availability of treatment centers, fewer services provided by Medicare providers, and of belonging to a lower socioeconomic group.[30] Equal access to healthcare is the foundation for children with mental disabilities to find the resources and treatment plans that will enable them to not only survive but also reach their full. With Hispanic people comprising both the largest minority population in the United States and the majority of the 25 million people in the United States with limited English proficiency, healthcare must continue to make adjustments in order to ensure that ASD is not only diagnosed accurately for this population, but healthcare providers also need to ensure that this demographic continues to feel supported as they navigate this complex condition.[31] Similarly, Black Americans continue to face the greatest discrimination of any group in America, and improving access to timely quality ASD treatment is crucial.[32]

As a growing pediatric concern, ASD was found to occur in 1-in-125 children in 2018 only to triple to 1-in-36 in 2023.[33] As the ASD population increases and the conversation shifts towards finding the resources to assist individuals on the spectrum better integrate into their communities, understanding the health disparities that affect progress is paramount. By diminishing the barriers to affordable and accessible care for marginalized communities, autism advocates will continue to become better equipped to serve the diverse population of individuals with ASD.

Help and support are available: If you or someone you know is struggling to obtain an ASD diagnosis and/or treatment, please reach out to a licensed mental health professional (e.g., a psychotherapist, psychologist or psychiatrist) for guidance and support.

Contributed by: Kate Campbell

Editor: Jennifer (Ghahari) Smith, Ph.D.

References

1 National Institutes of Health. Autism Spectrum Disorder. National Institute of Health Website. Updated 2023. Accessed June 12, 2023.  https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd

2 Centers for Disease Control and Prevention. Signs and Symptoms of Autism of Spectrum Disorder. Centers for Disease Control and Prevention Website. Updated March 28, 2022. Accessed June 12, 2023. https://www.cdc.gov/ncbddd/autism/signs.html

3 Whiteley, P., Carr, K., & Shattock, P. (2019). Is Autism Inborn And Lifelong For Everyone?. Neuropsychiatric disease and treatment, 15, 2885–2891. https://doi.org/10.2147/NDT.S221901

4 Durkin, M. S., Maenner, M. J., Baio, J., Christensen, D., Daniels, J., Fitzgerald, R., Imm, P., Lee, L. C., Schieve, L. A., Van Naarden Braun, K., Wingate, M. S., & Yeargin-Allsopp, M. (2017). Autism Spectrum Disorder Among US Children (2002-2010): Socioeconomic, Racial, and Ethnic Disparities. American journal of public health, 107(11), 1818–1826. https://doi.org/10.2105/AJPH.2017.304032

5 Ibid.

6 Centers for Disease Control and Prevention. Autism Prevalence Higher, According to Data from 11 ADDM Communities. Centers for Disease Control and Prevention Website Updated March 23, 2023. Accessed June 10, 2023. 

7 Rosen, N. E., Lord, C., & Volkmar, F. R. (2021). The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond. Journal of autism and developmental disorders, 51(12), 4253–4270. https://doi.org/10.1007/s10803-021-04904-1

8 American Psychiatric Association. (2023). New Research Points to Disparities in Autism Prevalence and Access to Care. Last updated April 23, 2023. Accessed June 20, 2023. https://www.psychiatry.org/news-room/apa-blogs/disparities-in-autism-prevalence-and-access

9 Mandell, D.S., Listerud, J., Levy, S.E., Pinto-Martin, J.A. (2002). Race Differences in the Age at Diagnosis Among Medicaid-Eligible Children with Autism. Journal of Child & Adolescent Psychiatry, 41(12), 1447-1453. https://doi.org/10.1097/00004583-200212000-00016.

10 Centers for Disease Control and Prevention. Spotlight on Closing the Racial and Ethnic Gaps in the Identification of Autism Spectrum Disorder among 8-year-old-Children. Centers for Disease Control and Prevention Website. Last updated March 23, 2023. Accessed June 23, 2023. https://www.cdc.gov/ncbddd/autism/addm-community-report/spotlight-on-closing-racial-gaps.html

11 Ibid.

12 Paradies, Y., Ben, J., Denson, N., Elias, A., Priest, N., Pieterse, A., Gupta, A., Kelaher, M., & Gee, G. (2015). Racism as a Determinant of Health: A Systematic Review and Meta-Analysis. PloS one, 10(9), e0138511. https://doi.org/10.1371/journal.pone.0138511

13 Price, J. H., Khubchandani, J., McKinney, M., & Braun, R. (2013). Racial/ethnic disparities in chronic diseases of youths and access to healthcare in the United States. BioMed research international, 2013, 787616. https://doi.org/10.1155/2013/787616

14 Mehta, N. K., Lee, H., & Ylitalo, K. R. (2013). Child health in the United States: recent trends in racial/ethnic disparities. Social science & medicine (1982), 95, 6–15. https://doi.org/10.1016/j.socscimed.2012.09.011

15 The Urban Institute.(2009). Racial and Ethnic Disparities among Low-Income Families [Fact sheet]. https://www.urban.org/sites/default/files/publication/32976/411936-racial-and-ethnic-disparities-among-low-income-families.pdf

16 Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of autism and developmental disorders, 37(9), 1795–1802. https://doi.org/10.1007/s10803-006-0314-8

17 Halberstadt, A. G., Cooke, A. N., Garner, P. W., Hughes, S. A., Oertwig, D., & Neupert, S. D. (2022). Racialized emotion recognition accuracy and anger bias of children’s faces. Emotion, 22(3), 403–417. https://doi.org/10.1037/emo0000756

18 Ibid.

19 Centers for Disease Control and Prevention. Spotlight on Closing the Racial and Ethnic Gaps in the Identification of Autism Spectrum Disorder among 8-year-old-Children. Centers for Disease Control and Prevention Website. Last updated March 23, 2023. Accessed June 23, 2023. https://www.cdc.gov/ncbddd/autism/addm-community-report/spotlight-on-closing-racial-gaps.html

20 Shapiro, J., Monzó, L. D., Rueda, R., Gomez, J. A., & Blacher, J. (2004). Alienated advocacy: perspectives of Latina mothers of young adults with developmental disabilities on service systems. Mental retardation, 42(1), 37–54. https://doi.org/10.1352/0047-6765(2004)42<37:AAPOLM>2.0.CO;2

21 Ibid.

22 Steinberg, E. M., Valenzuela-Araujo, D., Zickafoose, J. S., Kieffer, E., & DeCamp, L. R. (2016). The "Battle" of Managing Language Barriers in Health Care. Clinical pediatrics, 55(14), 1318–1327. https://doi.org/10.1177/0009922816629760

23 Ibid.

24 Warm Line. (2021). Autism Society of Los Angeles. https://www.autismla.org/1/program/speaker-series/

25 Advocacy, Education, and Support. (2023). Autism in Black. https://www.autisminblack.org/

26 About CDC’s Learn the Signs. Act Early. Program. (2023). Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/wicguide/about-cdcs-learn-the-signs-act-early-program.html

27 Ferrán, C. L., Hutton, B., Page, M.L., Driver, J.A., Ridao, M., Arroyo, A.A., Valencia, A., Saint-Gerons, D.M.,Tabarés-Seisdedos, R. (2022). Mortality in Persons With Autism Spectrum Disorder or Attention-Deficit/Hyperactivity Disorder. JAMA Pediatr, 176(4), e216401. https://doi.org/10.1001/jamapediatrics.2021.6401

28 Ibid.

29 Ibid.

30 Steinberg, E. M., Valenzuela-Araujo, D., Zickafoose, J. S., Kieffer, E., & DeCamp, L. R. (2016). The "Battle" of Managing Language Barriers in Health Care. Clinical pediatrics, 55(14), 1318–1327. https://doi.org/10.1177/0009922816629760

31 Dietrich, S., Hernandez, E. (2022). What Languages Do We Speak in the United States? United States Census Bureau Website. Last updated December 06, 2022. Accessed June 27, 2023.

32 The Texas Politics Project. Most Discriminated Group (April 2022). The Texas Politics Project at the University of Texas at Austin Website. https://texaspolitics.utexas.edu/set/most-discriminated-group-april-2022

33 Centers for Disease Control and Prevention. Data and Statistics on Autism Spectrum Disorder, Centers for Disease Control and Prevention Website. Last updated April 4, 2023. Accessed June 25, 2023.

Understanding the Mental Health of Children on the Autism Spectrum

Signs of ASD in Children 

Autism Spectrum Disorder (ASD) is a developmental condition affecting a person's ability to socialize and communicate with others. It can also present with restricted and/or repetitive behavior patterns, interests, or activities. ASD is considered a “spectrum” because some people diagnosed with this disorder are mildly affected while others are severely disabled.[1] 

Approximately 1-in-100 people are on the autism spectrum[2] and the CDC reports that roughly 1-in-36 children has been identified with ASD.[3] People with ASD typically get diagnosed in their early years since symptoms of ASD often begin to appear during the first three years of life.[4] Some symptoms of ASD in children may include:[5,6]

• Difficulty engaging in everyday human interactions

• Intense specific interests

• Different ways of interacting with others

• Failing to make eye contact

• Not responding to their name

• Playing with toys in unusual, repetitive ways

• Severe tantrums or non-compliance

• Destructiveness

• Self-injurious behavior

• They may sleep less or are awake frequently during the night

Co-Morbid Mental Health Conditions in Children with ASD

Autism Spectrum Disorder is one of the most common disabilities affecting children and has drawn many researchers to investigate the well-being of children affected by ASD’s well-being. Studies show children with ASD are at higher risk of developing a mental health condition; Melissa (2021) notes that it is reported that more than three-quarters of children with ASD have at least one co-morbid mental health condition. Based on the statistic, children with ASD are likely to develop a mental health condition which is more than children with an intellectual disability, special health care needs, or the general population.[7]

The most common mental health conditions children with ASD experience, in order, are behavioral/conduct problems, attention-deficit/hyperactivity disorder (ADHD), anxiety, and depression.[8] Research has found certain factors have been tied to an increased likelihood of specific mental health conditions compared to others. For example: 

• Females with ASD are more likely to have anxiety; 

• Children with ASD and intellectual impairments are more likely to have behavioral problems;

• Children with ASD who experience multiple adverse childhood experiences have greater odds of anxiety and ADHD.[9] 

Age is yet another factor that affects how mental health conditions present in children, as emotional, behavioral, and social difficulties can influence the timing of an autism diagnosis. Early childhood diagnoses usually present with greater emotional, conduct, hyperactivity, and social difficulties. Meanwhile, late-diagnosed children often have mental health and social difficulties before diagnosis that become more severe as they enter adolescence.[10]

Multiple reasons contribute to children with ASD's high risk of developing mental health conditions. The Mental Health Foundation (2022) notes that children with ASD may struggle in trying to fit into or make sense of the world, which can lead them to have feelings of depression and anxiety.[11] The act of camouflaging or strategizing to hide autistic traits also contributes to higher levels of depression, anxiety, and stress in adolescents and adults with ASD.[12] Children with ASD are more likely to face stigma and discrimination because of their disorder,[13] and those with internalizing problems (e.g., feelings of guilt, fear, worry, depression or anxiety) are more likely to be victimized by bullying.[14] Lastly, children with ASD may face difficulties receiving the proper care for their mental health conditions, including delays in diagnosis and lack of appropriate support available (e.g., therapists trained to work with autistic children).[15]

Co-Morbid Condition Effects 

Categorized as an internalizing behavior of ASD, anxiety is an excessive feeling of worry about a variety of events and activities over a long period. Perihan, et al., (2021) and Shea et al., (2018) found that internalizing problems may predict externalizing problems (e.g., aggression, conduct issues, and hyperactivity) in children with ASD.[16,17] Children with ASD and ADHD have been found to express a more substantial severity of autistic symptoms than patients with ASD alone; this increase in symptoms may result from inattention, impulsivity and hyperactivity.[18] Greene & Sherrel (2022) report that obsessive-compulsive disorder (OCD) is also found comorbidity with ASD.[19] Repetitive behaviors and hoarding are common in mild forms of autism, and Bejerot (2007) has shown that a combination of ASD and OCD results in a more severe and treatment-resistant form of OCD.[20]

Example of visualized language cards.

Mental health treatment options 

Treatment for mental health conditions in autistic children often has to be tailored to accommodate how they individually communicate and make sense of the world around them. For example, existing clinical anxiety programs for neurotypical children use communication and the relationship between clients and therapists to treat the condition. However, since children with ASD experience social and communication difficulties, they may experience difficulty interacting with their therapists and understanding the therapeutic social and emotional contexts that foster successful treatment. Research has found visualization to be one of the most effective treatment strategies in promoting effective social interaction and communication in children with ASD and utilizing visualized language significantly improves the success of anxiety treatment in children with ASD.[21] 

Cognitive behavioral therapy (CBT) is another treatment option for children with autism spectrum disorder and mental health conditions (e.g., anxiety, depression and ADHD) and works by teaching children how to alter their beliefs or behaviors to avoid negative emotions.[22] The cognitive component of the therapy helps children change how they think about a situation, while the behavioral component helps change how they react.[23] Modifications to CBT techniques are often needed to provide a more successful treatment to children with ASD and therapists may include concrete, repetitive, and visual tactics and focus on the child's unique interests to hold their focus. Additionally, a therapist may have to incorporate frequent movement breaks or sensory activities for children with attention or sensory under- or over-reactivity.[24]

The role of community 

The mental health of children with ASD has been shown to improve as a result of community support. Caregivers of children with autism should be aware that feeling tired or hungry can increase the severity of the child’s mental health condition(s).[25] Additionally, families should be aware that accommodating anxiety by removing the source of anxiety in response to a child's outburst is not as beneficial as one would imagine it should be. Storch et al. (2015) studied the effects of family accommodation on anxiety levels of children with ASD and found that lower levels of family accommodation can actually lead to lower levels of anxiety.[26] It is also important that caregivers take care of their own physical and psychological needs since raising a child with ASD can be difficult to navigate; this will benefit the caregiver as well as the child as levels of parental psychological stress have also been positively correlated to anxiety symptoms in children and adolescents with ASD.[27]

Further, O'Connor et al., (2022) note that young people with ASD who have more positive friendship features present with fewer signs of depression.[28] Supporting children with ASD to have healthy, positive relationships can improve their overall mental health. Additionally, O’Connor et al. recommend teaching non-autistic children how to be supportive friends to their autistic peers in order to help more autistic children experience the positive effects of friendship.[29]

If you are the parent or caregiver of a child with ASD and are experiencing signs of significant stress, anxiety and/or depression, please reach out to a licensed mental health provider who can help you navigate through the nuances of this disorder as well as any stressors you may be experiencing.

Contributed by: Maria Karla Bermudez

Editor: Jennifer (Ghahari) Smith, Ph.D.

References

1 Autism. NAMI. (n.d.). Retrieved February 27, 2023, from https://www.nami.org/Learn-More/Mental-Health-Conditions/Related-Conditions/Autism#:~:text=Children%20with%20autism%20can%20also,conditions%20than%20children%20without%20autism.  

2 Autism and mental health. Mental Health Foundation. (2022, February). Retrieved February 27, 2023, from https://www.mentalhealth.org.uk/explore-mental-health/a-z-topics/autism-and-mental-health  

3 Data & Statistics on Autism Spectrum Disorder. Centers for Disease Control and Prevention. (2023, April). Retrieved August 23, 2023, from https://www.cdc.gov/ncbddd/autism/data.html

4 NAMI

5 Ibid. 

6 Payakachat, N., Tilford, J. M., Kovacs, E., & Kuhlthau, K. (2012, August). Autism spectrum disorders: A review of measures for clinical, health services and cost-effectiveness applications. Expert review of pharmacoeconomics & outcomes research. Retrieved February 27, 2023, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3502071/  

7 Melissa J. (2021, March). Mental health conditions seen in 78% of children with autism. Retrieved February 27, 2023, from https://publications.aap.org/aapnews/news/11976?autologincheck=redirected  

8 Ibid. 

9 Ibid.

10 Mandy, W., Midouhas, E., Hosozawa, M., Cable, N., Sacker, A., & Flouri, E. (2022). Mental health and social difficulties of late-diagnosed autistic children, across childhood and adolescence. Journal of child psychology and psychiatry, and allied disciplines, 63(11), 1405–1414. https://doi.org/10.1111/jcpp.13587

11 Mental Health Foundation (2022)

12 Bernardin, C. J., Lewis, T., Bell, D., & Kanne, S. (2021). Associations between social camouflaging and internalizing symptoms in autistic and non-autistic adolescents. Autism : the international journal of research and practice, 25(6), 1580–1591. https://doi.org/10.1177/1362361321997284

13 Mental Health Foundation (2022)

14 Cappadocia, M. C., Weiss, J. A., & Pepler, D. (2012). Bullying experiences among children and youth with autism spectrum disorders. Journal of autism and developmental disorders, 42(2), 266–277. https://doi.org/10.1007/s10803-011-1241-x

15 Mental Health Foundation (2022)

16 Perihan, C., Bicer, A., & Bocanegra, J. (2022). Assessment and Treatment of Anxiety in Children with Autism Spectrum Disorder in School Settings: A Systematic Review and Meta-Analysis. School mental health, 14(1), 153–164. https://doi.org/10.1007/s12310-021-09461-7

17 Shea, N., Payne, E., & Russo, N. (2018). Brief Report: Social Functioning Predicts Externalizing Problem Behaviors in Autism Spectrum Disorder. Journal of autism and developmental disorders, 48(6), 2237–2242. https://doi.org/10.1007/s10803-017-3459-8

18 Banaschewski, T., Poustka, L., & Holtmann, M. (2011). Autismus und ADHS über die Lebensspanne. Differenzialdiagnosen oder Komorbidität? [Autism and ADHD across the life span. Differential diagnoses or comorbidity?]. Der Nervenarzt, 82(5), 573–580. https://doi.org/10.1007/s00115-010-3239-6

19 Greene N, Sherrell Z.(2022, March). ADHD vs. OCD: Differences, symptoms, treatment, and more. Medical News Today. Retrieved February 27, 2023, from https://www.medicalnewstoday.com/articles/adhd-vs-ocd  

20 Bejerot S. (2007). An autistic dimension: a proposed subtype of obsessive-compulsive disorder. Autism : the international journal of research and practice, 11(2), 101–110. https://doi.org/10.1177/1362361307075699

21 Perihan et al., (2022)

22 Cognitive behavioral therapy for autism spectrum disorder in children. Patient Care at NYU Langone Health. (n.d.). Retrieved February 27, 2023, from https://nyulangone.org/conditions/autism-spectrum-disorder-in-children/treatments/cognitive-behavioral-therapy-for-autism-spectrum-disorder-in-children#:~:text=Cognitive%20behavioral%20therapy%20may%20be,behaviors%20to%20avoid%20negative%20emotions  

23 Ibid. 

24 Schorr, B. (2021, April 28). Cognitive behavioral therapy for autism. Hidden Talents ABA. Retrieved February 27, 2023, from https://hiddentalentsaba.com/cognitive-behavioral-therapy-for-autism/  

25 Behavioral Innovations. (2023, January 5). Autism and impact on mental health. Behavioral Innovations - ABA Therapy for Kids with Autism. Retrieved February 27, 2023, from https://behavioral-innovations.com/blog/autism-and-impact-on-mental-health/

26 Storch, E. A., Zavrou, S., Collier, A. B., Ung, D., Arnold, E. B., Mutch, P. J., Lewin, A. B., & Murphy, T. K. (2015). Preliminary study of family accommodation in youth with autism spectrum disorders and anxiety: Incidence, clinical correlates, and behavioral treatment response. Journal of anxiety disorders, 34, 94–99. https://doi.org/10.1016/j.janxdis.2015.06.007

27 Guerrera, S., Pontillo, M., Tata, M. C., Di Vincenzo, C., Bellantoni, D., Napoli, E., Valeri, G., & Vicari, S. (2022). Anxiety in Autism Spectrum Disorder: Clinical Characteristics and the Role of the Family. Brain sciences, 12(12), 1597. https://doi.org/10.3390/brainsci12121597

28 O'Connor, R. A. G., van den Bedem, N., Blijd-Hoogewys, E. M. A., Stockmann, L., & Rieffe, C. (2022). Friendship quality among autistic and non-autistic (pre-) adolescents: Protective or risk factor for mental health?. Autism : the international journal of research and practice, 26(8), 2041–2051. https://doi.org/10.1177/13623613211073448

29 Ibid.

Brain Changes in Autism Spectrum Disorder: Emerging Research & Potential Treatments

Expanding Our Understanding of ASD

Over the past year, new research emerged that deepened the scientific community’s understanding of brain changes in autism spectrum disorder (ASD). In 2018, the National Institute of Health (NIH) estimated that among eight-year-old children in the United States, 1 in 44 are diagnosed with ASD (males 3 to 4 times more likely to be diagnosed than females).[1] Since those with ASD often struggle with ongoing social difficulties throughout life, the latest studies may provide insights and implications for ground-breaking potential treatments.

Study 1: Vocal Prosody

Vocal prosody refers to changes in speech that include volume variations, stress patterns, pauses, intonation, and rhythm.[2] These types of verbal emotional cues are an important aspect of child development, and the inability to pick up on them is considered a prominent component of ASD behavior. There are currently two theories explaining why individuals with ASD have difficulty with verbal cues.[3] The sensory deficit model proposes that the auditory regions of the brain are processing sounds differently when an individual has ASD.[4] A second theory uses social cognition to hypothesize that individuals with autism process auditory sounds normally, but then interpret them differently in the social regions of the brain.[5]

 A recent study conducted by Stanford School of Medicine used MRI brain scans to show that both children with autism and a neurotypical control group used the auditory processing region of the brain when listening to voices– but there were differences in how the signal reached the social region of the brain.[6] This supports the social cognitive approach that the auditory processing in both groups is the same, but that sounds are then interpreted differently by individuals with ASD.[7]

Researchers believe that they may now be able to incorporate this knowledge into techniques for treatment. Dr. Simon Leipold, one of the authors of the study, explains these findings indicate that, “the temporoparietal junction might be a promising brain region to target” when looking at future treatments.[8] For example, it is possible that techniques previously examined by Stanford Medicine to help ASD children recognize facial expressions may now be applied to accurately identifying vocal cues.[9]

Study 2: Changes in the Cerebral Cortex

A study led by UCLA found that brain changes in those diagnosed with autism are more pervasive than previously realized.[10] Gandal et al., (2022) conducted RNA sequencing analysis to evaluate differences in 11 distinct brain regions by matching samples from individuals with idiopathic ASD to neurotypical controls.[11] The researchers found changes in all 11 cortical regions, indicating widespread differences at the molecular level.[12] Until this study, it was previously believed that brain changes in ASD only took place in the specific regions believed to affect language and behavior.[13] 

These comprehensive findings are the result of more than a decade of research which culminated in developing a full analysis of the autistic brain.[14] Further, Gandal et al., determined the largest differences were found in the visual and parietal cortex, which may help explain the sensory hypersensitivity that is often reported by individuals with ASD. Dr. Daniel Geschwind, a professor of Human Genetics, Neurology and Psychiatry at UCLA who authored the study, stated that these findings can now serve as a starting point to develop new pharmaceutical therapies that specifically address these mechanisms.[15]  

Study 3: Neuroinflammation

Neuroinflammation is an immune response that takes place in the central nervous system, and it is believed to be activated by infection, psychological stress, toxins, trauma, aging, and ischemia.[16] Though neuroinflammation does have normal function during the processes of protection and repair, acute or chronic inflammation can result in altered behavior and cognition.[17] A recent study of 1,275 immune genes showed atypical expression patterns that varied by condition in the brains of adults diagnosed with: autism; depression; bipolar disorder; schizophrenia; Parkinson’s disease; and/or Alzheimer’s disease.[18] 

Lead researcher, Dr. Chunyu Liu, explains these expressions are “signatures” for each diagnosis that could potentially be used as markers of inflammation, indicating the immune system may be a “major player” in brain disorders.[19] However, from the current study, it is not possible to tell whether these conditions altered immune activation or whether immune activations contributed to the development of these conditions.[20]

The brains of those diagnosed with autism specifically showed 275 genes with varied expression levels compared to controls, with autistic males presenting more variation than autistic females.[21] This study’s analysis also found that ASD was clustered more closely with the neurological disorders of Alzheimer’s Disease and Parkinson’s Disease than psychiatric conditions such as major depressive disorder, bipolar disorder, or schizophrenia.[22] Chen et al., note these findings indicate that different types of immune-related treatment strategies may be needed for different clusters of diseases.[23]

Study 4: Differences Among Males & Females

There are new indications that autism may shift the brain towards typically male characteristics.[24] To evaluate this question, Floris et al., conducted research predicting the sex of a brain based on brain images and found that the accuracy of sex prediction was higher for autistic males compared to both autistic females and neurotypical males. More accurate predictions were also found in adults than children, indicating these differences may vary throughout developmental stages. Specifically, researchers found that visual and auditory processing areas normally associated with facial and speech recognition indicated a shift towards male brain structure. A comparison of neurotypical and autistic female brains further reinforced this idea, with autistic females showing sensory pathways that are normally seen in neurotypical males. This finding supports sensory-based theories which suggest that early disruptions to motor and sensory processing may lead to some of the social symptoms seen in ASD.[25]

It is also important to note that a similar test conducted on the brains of those diagnosed with attention deficit hyperactivity disorder (ADHD) did not produce the same results.[26] This research by Floris et al., furthers the biological understanding of ASD and creates the groundwork for a deeper understanding of differences in ASD between sexes.[27]

Study 5: Genetic Mutation

A seven-year study conducted by Rutgers University analyzed a gene mutation in ASD known as R451C in the gene Neurologin-3.[28] Prior to this research, studies on the mutation in the synapses of mice indicated there was a causative relationship between the mutation and the pathophysiology of ASD, but it was not clear if these findings could be extended to humans.[29] Wang et al., (2022) conducted this study with the goal of understanding whether the mutation would have a similar effect on the function of synapses in human neurons.[30]

The research team used CRISPR (a unique gene editing technology) to alter the genetic material of human stem cells and derive human neuron cells, which carried the mutation they wanted to analyze.[31] They then implanted human cells both with and without the mutation into the brains of mice to compare the results.[32] Evidence from their research showed a burst of electrical activity (indicating an overstimulation) in the mutated genes which was more than double what was observed in the non-mutated cells.[33] The results were consistent with earlier hypotheses and indicate there may be a physiological path between increased excitatory synaptic activity and the development of ASD.[34] Senior author of this study, Dr. Zhiping Pang, hopes that the unique techniques developed to perform this experiment will be used by future researchers to not only conduct further studies on mental disorders, but also potentially develop new therapeutics.[35]

Study 6: Phelan-McDermid Syndrome

A team of researchers at Northwestern University Feinberg School of Medicine, led by Dr. Peter Penzes, developed a new therapy to treat a subtype of ASD, known as Phelan-McDermid syndrome (PMS). PMS, a rare genetic condition, is known to be caused by a specific mutation within the SHANK3 gene that is characterized by epilepsy, global developmental delay, and absent or delayed speech.[36,37]

Rohman (2022) notes the team developed a derivative of an insulin-like growth factor-binding protein (IGFBP2) that was previously shown to improve cognitive functions and neuroplasticity.[38] Researchers administered the derived peptide (JB2) to mice with similar mutations and evaluated the results with brain imaging.[39] The treatment showed improvement in ultrasonic vocalization, learning, memory, synaptic function and plasticity, and motor functions in addition to normalizing seizure susceptibility and neuronal excitability.[40] Dr. Penzes believes this study may lead to a pediatric treatment that could be used to address symptoms while the brain is developing, though acknowledges it is difficult to get revolutionary types of treatment approved.[41]

The afore-mentioned studies conducted over the past year illustrate significant gains in the scientific understanding of ASD. As technologies such as CRISPR become more commonplace, the potential exists to develop new biomarkers to diagnose ASD and develop novel treatments that can intervene early in the process of development by addressing the root cause of symptoms. These studies serve to clarify our understanding of the unique needs of individuals with autism and provide hope for families in the future.

Contributed by: Theresa Nair

Editor: Jennifer (Ghahari) Smith, Ph.D.

REFERENCES

1 Autism spectrum disorder (ASD). National Institute of Mental Health (NIMH) Web site. https://www.nimh.nih.gov/health/statistics/autism-spectrum-disorder-asd. Updated 2022. Accessed Feb 4, 2023.

2 Meredith A. Prosody and articulation. Apraxia Kids Web site. https://www.apraxia-kids.org/apraxia_kids_library/prosody-and-articulation/. Accessed Feb 4, 2023.

3 Leipold S, Abrams DA, Karraker S, Phillips JM, Menon V. Aberrant emotional prosody circuitry predicts social communication impairments in children with autism. Biological Psychiatry: Cognitive Neuroscience and Neuroimaging. 2022. https://www.sciencedirect.com/science/article/pii/S2451902222002452. doi: 10.1016/j.bpsc.2022.09.016.

4 Digitale E. Brain wiring explains why autism hinders grasp of vocal emotion, says stanford medicine study. News Center Web site. http://med.stanford.edu/news/all-news/2023/01/brain-autism-speech-emotion.html. Updated 2023. Accessed Jan 20, 2023.

5 Digitale (2023)

6 Ibid.

7 Leipold et al. (2022)

8 Digitale (2023)

9 Ibid.

10 Brain changes in autism are far more sweeping than previously known, study finds: The study is the most comprehensive effort yet to study how autism affects the brain at the molecular level -- ScienceDaily. Science Daily. 2022. https://www.sciencedaily.com/releases/2022/11/221102123603.htm. Accessed Jan 17, 2023.

11 Gandal MJ, Haney JR, Wamsley B, et al. Broad transcriptomic dysregulation occurs across the cerebral cortex in ASD. Nature. 2022;611(7936):532-539. https://www.nature.com/articles/s41586-022-05377-7. Accessed Jan 18, 2023. doi: 10.1038/s41586-022-05377-7.

12 SD (2022)

13 Ibid.

14 Ibid.

15 Ibid.

16 Chen Y, Dai J, Tang L, et al. Neuroimmune transcriptome changes in patient brains of psychiatric and neurological disorders. Mol Psychiatry. 2022. doi: 10.1038/s41380-022-01854-7.

17 Ibid.

18 Dattaro L. Immunity-linked genes expressed differently in brains of autistic people. Spectrum | Autism Research News Web site. https://www.spectrumnews.org/news/immunity-linked-genes-expressed-differently-in-brains-of-autistic-people/. Updated 2023. Accessed Jan 21, 2023.

19 Ibid.

20 Ibid.

21 Ibid.

22 Chen et al. (2022)

23 Ibid.

24 Hernandez L. Sex-differential neuroanatomy in autism: A shift toward male-characteristic brain structure | american journal of psychiatry. . 2023. https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.20220939. Accessed Jan 20, 2023.

25 Ibid.

26 Ibid.

27 Ibid.

28 MacPherson K. Gene mutation leading to autism found to overstimulate brain cells. Rutgers | The State University of New Jersey Web site. https://www.rutgers.edu/news/gene-mutation-leading-autism-found-overstimulate-brain-cells. Updated 2022. Accessed Jan 29, 2023.

29 Wang L, Mirabella VR, Dai R, et al. Analyses of the autism-associated neuroligin-3 R451C mutation in human neurons reveal a gain-of-function synaptic mechanism. Mol Psychiatry. 2022:1-16. https://www.nature.com/articles/s41380-022-01834-x. Accessed Jan 29, 2023. doi: 10.1038/s41380-022-01834-x.

30 Ibid.

31 MacPherson (2022)

32 Ibid.

33 Ibid.

34 Wang et al. (2022)

35 MacPherson (2022)

36 Rohman M. Northwestern investigators develop new therapy for autism subtype. Northwestern Medicine News Center Web site. https://news.feinberg.northwestern.edu/2022/12/26/northwestern-investigators-develop-new-therapy-for-autism-subtype/. Updated 2022. Accessed Jan 21, 2023.

37 Burgdorf JS, Yoon S, Dos Santos M, Lammert CR, Moskal JR, Penzes P. An IGFBP2-derived peptide promotes neuroplasticity and rescues deficits in a mouse model of phelan-McDermid syndrome. Mol Psychiatry. 2022:1-11. https://www.nature.com/articles/s41380-022-01904-0. Accessed Jan 25, 2023. doi: 10.1038/s41380-022-01904-0.

38 Rohman (2022)

39 Ibid.

40 Burgdorf et al. (2022)

41 Rohman (2022)