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.