Learning While Undocumented: Psychological Impacts of a Student’s Immigration Status

Who is considered undocumented?

Many people relocate to another country in search of better economic opportunities and superior education. In particular, undocumented students often have high academic aspirations to break cycles of poverty and seek to do something truly meaningful with their lives.[1] People may be considered undocumented if they are in the process of gaining legal status, have Deferred Action Childhood Arrival (DACA), have entered the United States without inspection, used fraudulent documents, or entered legally but stayed without authorization.[2] Some have arrived in the country as children with their parents, while others have decided to immigrate as young adults. In many cases, undocumented students were brought to the US as young children and this is the only country they really know and can call “home.” The absence of a clear path to legality can generate stress, anxiety, and frustration - all of which can be harmful to mental health.  

The Undocumented Students Mental Health Crisis 

Mental health is a significant public health issue in the United States, especially for young adults.  The Substance Abuse and Mental Health Association’s national data shows that in the past year, 30.6% of young adults aged 18-25 experienced a mental, behavioral, or emotional disorder, and 17% had a major depressive episode.[3] 

In addition to the mental health challenges of being a young adult, there are also the challenges associated with being a student, which is even more difficult for those with an uncertain immigration status. As there is no federal law prohibiting undocumented students from attending college or university, many institutions review all prospective students under the same admissions criteria regardless of status.[4] Thus, over 427,000 undocumented college students are enrolled in U.S. colleges and universities, and research confirms that their immigration status negatively impacts their well-being due to psychosocial challenges.[5] 

Enriquez (2019) notes that undocumented students' well-being is often impacted by the additional stressors of limited financial resources due to restricted job opportunities, fear of deportation for self and others, uncertainty about the future, and stigmatization.[6] Torres (2022) found that undocumented students have significantly higher stress levels than students who are U.S. citizens or protected under DACA, likely due to immigration fears.[7] Additionally, Cadenas (2022) explored the impacts of insecure immigration status on college students and found that precarious immigration status was linked to lower perceptions of welcoming campus climate, lower positive mental health, and higher anxiety.[8] Another challenge that undocumented students face is whether to disclose their immigration status due to the potentially negative consequences they feel they may incur.[9]

Age of Arrival

The pursuit of education while undocumented is not the same for every undocumented student, as several factors create a unique learning experience or hurdle. Cha (2019) found significant disadvantages faced by students arriving at a later age than those who have had the majority of their K-12 schooling completed in the United States. Notably, those arriving in their late teens to early twenties often had below-level course placement, less time to learn the US education system, and often a lack of access to ethnically-similar peers outside of ESL courses.[10] Furthermore, forming positive relationships with school agents did not enable them to surmount the aforementioned structural barriers.[11]

The DACA Impact

Established in 2012, the Deferred Action Childhood Arrival (DACA) program provides renewable two-year access to work permits and protection from deportation to approximately 653,000 immigrants in the United States.[12,13] If an individual meets the eligibility requirements they can apply for the DACA program by submitting the application through the U.S. Citizenship and Immigration Services website.[14] The eligibility requirements for the DACA program are as follows:[15]

• Were under the age of 31 as of June 15, 2012

• Have entered the U.S. before turning 16 years old

• Have continuously resided in the U.S. since June 15, 2007 up to the present time

• Have been physically present in the U.S. on June 15, 2012 and at the time of application for DACA

• Have had no lawful immigration status on June 15, 2012

• Currently enrolled in school (or have returned to school), graduated, obtained certificate of completion (e.g., GED) OR be an honorably discharged U.S. veteran

• Have not been convicted of a felony offense, a significant misdemeanor offense, multiple misdemeanor offenses, or otherwise pose a threat to national security or public safety

Thus, an undocumented person can apply to the DACA program and gain temporary legal status by being an active or graduate student in the U.S., by obtaining a GED, or being honorably discharged from the military. Being a DACA recipient helps to overcome some of the structural barriers created by illegal status. According to a study by Cha (2019), DACA recipients report improved high school and college completion rates, higher-paying jobs with better working conditions, eligibility to obtain bank accounts and driver's licenses, and better overall psychological well-being.[16] Further research by Torres (2022) found that undocumented students reported significantly greater stress than citizens, while DACA recipients' stress levels did not differ from those of United States citizens.[17] 

Protection under DACA allowed recipients to spend less time in "survival mode," as found by a review conducted by Siemons (2017), thus enabling them to devote more time and energy to meeting higher-level needs such as fulfilling higher education goals.[18] Even though DACA does not grant permanent legal status, it is renewable every two years. DACA aims to provide a safe environment for these individuals to pursue higher education and better-paying jobs which could lead to sponsorship opportunities for permanent legal status or longer-term work visas.

Seeking Help

Undocumented students often face obstacles when trying to access the support they need to overcome structural barriers. According to Cha (2019), these students are less-likely to use their college mental health services due to various reasons such as: low perceived need (as mental strain is often normalized within immigrant communities); a sense of futility (as they may believe that treatment would not address the underlying immigration issues); or fear of being stigmatized for mental health issues or immigration status.[19] 

Ayon's (2022) research found that greater perceptions of social exclusion due to the immigration policy context predicted lower use of on-campus mental health services by undocumented students.[20] However, when students encountered greater levels of mental health symptoms, perceived mental health needs, and campus-wide resources were available, undocumented students then had a greater likelihood of using on-campus mental health resources.[21] Further, a review by Butt in 2023 found that creating student organizations or support groups for undocumented students can help create a more welcoming and inclusive campus environment, thus making them more likely to seek help through on-campus services.[22] These changes can be especially important and impactful as it’s crucial to address one’s mental health struggles before they reach peak levels of distress. 

Undocumented students face numerous challenges while pursuing higher education, but continue to work towards their education since it can lead to significant benefits. A higher degree can lead to better-paying job opportunities and possible sponsorship for a long-term visa or permanent legal status. While a degree from a U.S. institution is recognized in many foreign countries, many undocumented immigrants who seek higher education in the U.S. have lived there for most of their lives and consider it their home. Therefore, as a society, it is beneficial to promote and foster good mental health resources for undocumented students as they often aspire to stay within the U.S. post-graduation to continue to improve their lives in the country they grew up in and feel a part of, while also “giving back” to the community they live in. 

Contributed by: Maria Karla Bermudez

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

References

1 Butt, M., & Brehm, C. (2023). Seeking Access: Role Strain, Undocumented Students, and the Pursuit of College. The International Journal of Educational Organization and Leadership, 30(2), 67-86. https://doi.org/10.18848/2329-1656/CGP/v30i02/67-86

2 Who are undocumented students? - immigrants rising. Immigrants Rising. (2023, October). https://immigrantsrising.org/wp-content/uploads/Immigrants-Rising_Overview-of-Undocumented-Students.pdf 

3 Substance Abuse and Mental Health Services Administration. 2020. “Key Substance Use and Mental Health Indicators in the United States: Results from the 2020 National Survey on Drug Use and Health.” https://www.samhsa.gov/data/sites/default/files/reports/rpt35325/NSDUHFFRPDFWHTMLFiles2020/2020NSDUHFFR1PDFW102121.pdf.

4 Undocumented student frequently asked questions: Applying to the UW. Admissions. (n.d.). https://www.washington.edu/admissions/undocumented/undocumented-faq/#:~:text=There%20is%20no%20federal%20or,admissions%20criteria%20regardless%20of%20status 

5 Nienhusser, H. K., & Romandia, O. (2022). Undocumented college students' psychosocial well-being: A systematic review. Current opinion in psychology, 47, 101412. https://doi.org/10.1016/j.copsyc.2022.101412

6 Enriquez, Laura E. 2019. “Border Hopping Mexicans, Law-Abiding Asians, and Racialized Illegality: Analyzing Undocumented College Students’ Experiences through a Relational Lens.” Relational Formations of Race: Theory, Method and Practice. Edited by Natalia Molina, Daniel Martinez HoSang, and Ramón A. Gutiérrez. University of California Press.

7 Torres, A., Kenemore, J., & Benham, G. (2022). A Comparison of Psychological Stress and Sleep Problems in Undocumented Students, DACA Recipients, and U.S. Citizens. Journal of Immigrant and Minority Health, 24(4), 928-936. https://doi.org/10.1007/s10903-021-01315-3

8 Cadenas, G. A., Nienhusser, K., Sosa, R., & Moreno, O. (2022). Immigrant students' mental health and intent to persist in college: The role of undocufriendly campus climate. Cultural diversity & ethnic minority psychology, 10.1037/cdp0000564. Advance online publication. https://doi.org/10.1037/cdp0000564

9 Butt & Brehm (2023)

10 Cha BS, Enriquez LE, Ro A. Beyond access: Psychosocial barriers to undocumented students' use of mental health services. Soc Sci Med. 2019 Jul;233:193-200. doi: 10.1016/j.socscimed.2019.06.003. Epub 2019 Jun 5. PMID: 31212126.

11 Ibid.

12 Ibid.

13 Torres et al. (2022)

14 Steps to apply for DACA for the first time. IMMIGRANTS RISING. (2022, December 2). https://immigrantsrising.org/resource/steps-to-apply-for-daca-for-the-first-time/ 

15 Ibid.

16 Cha et al. (2019)

17 Torres et al. (2022)

18 Siemons R, et al. Coming of age on the margins: Mental health and wellbeing among Latino immigrant young adults eligible for Deferred Action for Childhood Arrivals (DACA). J Immigr Minor Health. 2017;19(3):543–51.

19 Cha et al. (2019)

20 Ayón C, Ellis BD, Hagan MJ, Enriquez LE, Offidani-Bertrand C. Mental health help-seeking among Latina/o/x undocumented college students. Cultur Divers Ethnic Minor Psychol. 2022 Dec 15. doi: 10.1037/cdp0000573. Epub ahead of print. PMID: 36521136.

21 Ibid.

22 Butt & Brehm (2023)

Inside Anorexia: Understanding the Mental & Physical Impacts

Anorexia’s Grip on the Mind & Body 

Anorexia nervosa, more commonly known as anorexia, is an eating disorder marked by significantly low body weight, an extreme fear of weight gain, and a distorted perception of one’s body weight.[1] There are two main subtypes of anorexia: the first includes a restricted diet with extensive weight loss and lack of energy intake, while the second includes binge-purge eating behaviors where the person will combine episodes of excessive eating and self-induced vomiting. Nevertheless, both subtypes are driven by the individual’s motivation to control their weight and shape.[2,3]  

Due to the drastically decreased intake of nutrients of those with anorexia people suffering from the eating disorder can experience a wide range of physical, emotional, and behavioral symptoms including:[4]

• An unrealistic perception of body image or weight

• Fear of becoming fat 

• Thin appearance 

• Frequently skipping meals 

• Irritability 

• Social withdrawal 

• Abnormal blood count 

• Dry and/or yellowing skin 

• Fatigue 

• Eroding teeth from vomiting 

• Excessive exercise 

• Frequently checking mirrors or reflections for perceived flaws  

In recent years, research on the biological causes of anorexia has sharply increased. Researchers have begun focusing on possible genetic factors that may explain why certain individuals are at higher risk for developing anorexia than others. Additionally, certain personality characteristics have been linked to the development of anorexia including those that exhibit obsessive-compulsive tendencies, or those suffering from additional mental illnesses, such as anxiety or depression.[5,6] While males also suffer from anorexia, young girls are increasingly at risk of becoming anorexic due to the emphasis on thinness being equated to beauty, especially within Western culture.[7]

Physiological Effects 

Anorexia can have considerable effects on the human body, and may even become fatal. The major concern for those struggling with this eating disorder is the effects it has on the cardiovascular system, as heart damage is the most common reason for hospitalization in those with anorexia.[8] Moreover, for those suffering from the subtype of anorexia that includes purging, there is a greater risk of depleting the body of electrolytes which are essential in muscle contractions, notably the heartbeat.[9,10] With the restricted consumption of calories, the body is forced to break down its own tissue as fuel, with muscles being some of the first organs to go once fat has already been utilized. The heart also receives less energy leading to a drop in pulse and blood pressure from the lack of expendable energy. Hence there is a major risk for heart failure and mitral valve prolapse, a heart disease that affects the efficacy of the valve between the left heart chambers.[11] 

Another system that comes under concern is the gastrointestinal (GI) tract, especially concerning purging (i.e., forced vomiting or bowel movements). When an individual purges, it can interfere with the normal functioning of the stomach; the constant vomiting can lead to stomach pain and bloating, block the intestines from masses of undigested foods, and lead to nausea, thus perpetuating the feeling of needing to vomit.[12] Additionally, the stomach and esophagus can become worn down by the acid within the stomach, and in some cases rupture. The additional use of laxatives can also cause the individual to be constipated as the long-term restriction of food causes their body to no longer be able to digest food properly. It can also cause the body to become dependent on laxatives to have normal bowel movements.[13]

Many women will lose their menstrual cycle during severe cases of anorexia; this loss is due to the decrease in thyroid hormones that can both stop a woman’s cycle but also lead to bone loss, and a reduction in resting metabolic rate.[14,15] Furthermore, the effects of starvation can lead to high cholesterol levels and a drop in body temperature due to a lack of energy. Malnutrition can also decrease infection-fighting white blood cells making the individual more prone to sickness.[16] These combined factors have led eating disorders to be categorized as one of the deadliest disorders that currently exist.  

Neuropsychological Effects 

A major concern for those suffering from an eating disorder is the prevalence of suicide - roughly one-quarter to one-third of those with an eating disorder have attempted suicide, with 80% of those attempts occurring during depressive episodes.[17] In fact, depression and anxiety are two of the most common comorbid disorders related to anorexia. In a review by Calvo-River et al. (2022) the prevalence rate for depression and anorexia has been reported between 30 and 80%; such a large rate has been proposed due to the lack of studies investigating the relationship between the two pathologies.[18] Anxiety has also been found to have a large prevalence rate as Swinbourne et al. (2012) reported that from the 100 women presenting symptoms of disordered eating, 69% of them reported the onset of anxiety which proceeded to the onset of the eating disorder. From that, the most common anxiety diagnosed was social phobia (42%) and post-traumatic stress disorder (26%).[19] 

In addition, significant effects of anorexia nervosa have also been detected in numerous cognitive and neurological abilities. Due to the decrease in calories consumed by the individual, a person becomes unable to concentrate and often becomes obsessed with food. Additionally, the lack of nutrient intake damages the layer of lipids that are responsible for insulating neurons and allowing for more effective and rapid electrical conduction, thus slowing down signals being sent between neural connections between the brain and the body.[20]

The decrease in neurological function has led to the investigation into the effects anorexia has on numerous neuropsychological variables including:[21-23] 

• Executive Functioning: attention, planning, cognitive flexibility, set shift, mental flexibility 

• Learning: new rule learning, visual learning, verbal learning 

• Memory: verbal memory and nonverbal memory, working memory  

• Verbal Functioning: verbal fluency, verbal inhibition, verbal reasoning 

• Visuospatial Ability: spatial planning, visuospatial representation

• Speed of information processing

Executive functioning has been one of the most well-researched cognitive functions studied concerning anorexia as the effects of starvation have been shown to impair attention, mental flexibility, cognitive function, and decision-making.[24,25] In fact, papers such as Stedal et al (2021), Zakzanis et al. (2010), Grau et al. (2019), and Weider et al. (2014) all highlighted or found significant effects in individual executive functioning. Most notable were those found in Stedal et al. (2021) which discussed the possibility that the duration of illness may be linked to how severe the deficits in neuropsychological functioning are. Young individuals with a shorter duration of illness showed little difference in their performance compared to the typical control group.[26] However, this is in contrast to what has been previously found within adult groups. There is typically an overall low performance in all domains tested, including executive functioning, compared to the control group. Thus, the evidence seems to show that the duration of the eating disorder may be directly related to the negative effects on the brain.[27] Nevertheless, this idea is not the dominant one, as it was found in only four studies analyzed by Stedal et al. (2021) and so more investigation needs to be made into the relationship between the two variables.[28] 

Additionally, the lack of cognitive flexibility in individuals who suffer from anorexia poses a challenge once placed in therapy. Stedal et al. (2021) notes that patients' lack of willingness to change their thinking patterns, paired with increased compulsive behaviors for those who may purge, create reluctance to modify their thinking and eating patterns.[29] Thus, cognitive inflexibility and set cognitive shift can make key parts of therapy such as goal setting, collaboration, and thought experiences a challenge.

Memory has also been shown to be greatly impacted by anorexia nervosa. Zankzanis et al (2010), analyzed 36 different studies comparing the cognitive impairments between those suffering from anorexia nervosa and bulimia nervosa, a type of eating disorder characterized by episodes of binge eating followed by purging. From the 36 studies, a large effect size was found for deficits in decision-making, verbal memory, immediate and long-delay visual memory, and psychomotor speed.[30] The memory deficits were consistent with those highlighted by Aspen, et al. (2014) as eating disorder patients seemed to have a bias for memory of words that related to the body and body shape.[31] 

Misperceptions of body image in the mind constitute another pivotal focus in research on the effects of anorexia. Distortion of body image has been attributed to difficulties in visual perception and may even be linked to alterations in visual memory.[32] As Grau et al. (2019) propose individuals with eating disorders may process and organize information in less time and less efficiently.[33] Additionally, impairments in spatial perception and representation may affect the individual’s idea of what their body truly looks like. Typically, those with anorexia will rate their ideal body figure and figures they think others find more attractive as thinner than their current figure, and also thinner than what they believe they currently look like.[34]

Treatment 

There are multiple forms of treating anorexia nervosa, however, the most widely used for the treatment of eating disorders is Cognitive Behavioral Therapy (CBT). Mainly used with adults suffering from anorexia, the main goal of CBT is to specifically focus on returning the client to regular eating habits and challenging ideals that continue the overvaluation of their shape and weight.[35] CBT pushes the client to challenge their unrealistic thoughts about their appearance, encourages them to stop excessively exercising, and brings them into a space that can reinforce healthier eating habits. 

Conversely, the use of family-based treatment has shown exceptional improvements in adolescents suffering from anorexia, with Lock et al. (2010) citing a full or partial remission rate of 89% for individuals who used this form of therapy to recover from their eating disorder.[36] The gold standard for treating young adults with anorexia,[37] family-based therapy can be conducted with the individual's entire family or just their parents/guardians. Families must be involved in the recovery process of minors due to the fact their support can form as a short-term catalyst to help the recovery process. Additionally, bringing in the family can bring about the implementation of family meal patterns, allowing them and the clinician to suggest and try out methods to return the child’s eating patterns to normal.[38] Muratore & Attia (2021) note that more recently, developments have been made to hold sessions with parents only, as studies have indicated holding parent-focused treatment brings out better remission rates in adolescents.[39]

In addition to predominant methods, acceptance and commitment therapy (ACT) and dialectical behavioral therapy (DBT) are two new forms of treatment for anorexia on the rise. Both of these treatments emphasize the importance of mindfulness and acceptance during recovery as a way to reduce maladaptive behaviors. A recent pilot study conducted using acceptance and commitment therapy shows improvements in both weight and eating disorder symptoms, which may reduce rehospitalizations after individuals are discharged.[40] 

In more severe cases, individuals may need to attend multiple-day treatment programs typically held in hospitals allowing them access to medical care, individual or group therapy, and nutritional education. Some individuals may choose residential treatment. This treatment option allows individuals to temporarily live in the facilities which can assist those who have been to the hospital many times or show no signs of improvement through conventional avenues or rehabilitation.[41] 

Future Steps

A main issue with investigating the effects of anorexia, and other eating disorders, on individuals is the high rates of comorbid disorders.[42] Grau et al. (2019) reported that in their group of long-duration eating disorder patients, approximately 54-58% presented comorbidities, such as anxiety, depression, personality disorders, or substance use disorders.[43] Thus, more investigation must be made into how these comorbid effects may contribute to or worsen both physiological and neuropsychological effects on individuals with eating disorders. 

Another issue is that many studies have only investigated the effects on adult populations and neglect those of adolescents. Additionally, tests typically used to measure test performance are developed using an adult population, making it more difficult to get an accurate representation when using them on adolescents.[44] Thus, given the high rate of anorexia within youth populations, more accurate research must be done into the effects of eating disorders on adolescent populations and whether those changes in the brain and body can be reversed with time. 

Furthermore, more strides must be taken to diversify the population pool as many studies on this topic have been produced by overlapping authors and/or laboratories.[45] Nevertheless, these findings pose a great insight into the long-lasting changes to the human brain and body for those suffering from anorexia nervosa. 

If you or someone you know is struggling with extreme body shame and/or a difficult relationship with food, please reach out to a licensed mental health professional (e.g., a psychotherapist, psychologist, or psychiatrist) for guidance and support.

Contributed by: Ryann Thomson

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

References 

1 Stedal, K., Scherer, R., Touyz, S., Hay, P., & Broomfield, C. (2021). Research Review: Neuropsychological functioning in young anorexia nervosa: A meta‐analysis. Journal of Child Psychology and Psychiatry, 63(6), 616–625. https://doi.org/10.1111/jcpp.13562 

2 Anorexia nervosa - Symptoms and causes - Mayo Clinic. (2018, February 20). Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/anorexia-nervosa/symptoms-causes/syc-20353591 

3 National Eating Disorders Association. (2018, February 22). Health consequences. https://www.nationaleatingdisorders.org/health-consequences

4 “Anorexia Nervosa” Mayo Clinic

5 Ibid. 

6 Zakzanis, K. K., Campbell, Z., & Polsinelli, A. J. (2010). Quantitative evidence for distinct cognitive impairment in anorexia nervosa and bulimia nervosa. Journal of Neuropsychology, 4(1), 89–106. https://doi.org/10.1348/174866409x459674

7 “Anorexia Nervosa” Mayo Clinic

8 Northwestern Medicine. (2016). Disordered eating and your heart. Northwestern Medicine. https://www.nm.org/healthbeat/healthy-tips/anorexia-and-your-heart 

9 National Eating Disorders Association. (2018)

10 Northwestern Medicine. (2016)

11 “Anorexia Nervosa” Mayo Clinic

12 National Eating Disorders Association (2018)

13 Ibid. 

14 “Anorexia Nervosa” Mayo Clinic

15 National Eating Disorders Association (2018)

16 Ibid. 

17 Smith, A. R., Zuromski, K. L., & Dodd, D. R. (2018). Eating disorders and suicidality: what we know, what we don’t know, and suggestions for future research. Current Opinion in Psychology, 22, 63–67. https://doi.org/10.1016/j.copsyc.2017.08.023

18 Calvo-Rivera, M. P., Navarrete-Páez, M. I., Bodoano, I., & Gutiérrez-Rojas, L. (2022). Comorbidity between anorexia nervosa and Depressive Disorder: A Narrative review. Psychiatry Investigation, 19(3), 155–163. https://doi.org/10.30773/pi.2021.0188

19 Swinbourne, J., Hunt, C., Abbott, M. J., Russell, J., St Clare, T., & Touyz, S. (2012). The comorbidity between eating disorders and anxiety disorders: Prevalence in an eating disorder sample and anxiety disorder sample. Australian and New Zealand Journal of Psychiatry, 46(2), 118–131. https://doi.org/10.1177/0004867411432071

20 National Eating Disorders Association (2018)

21 Weider, S., Indredavik, M. S., Lydersen, S., & Hestad, K. (2014). Neuropsychological function in patients with anorexia nervosa or bulimia nervosa. International Journal of Eating Disorders, 48(4), 397–405. https://doi.org/10.1002/eat.22283

22 Grau, A., Magallón-Neri, E., Faus, G., & Feixas, G. (2019). Cognitive impairment in eating disorder patients of short and long-term duration: a case-control study. Neuropsychiatric disease and treatment, 15, 1329–1341. https://doi.org/10.2147/NDT.S199927 

23 Ibid.

24 Weider, et al., (2014)

25 Grau et al., (2019)

26 Stedal et al., (2021) 

27 Ibid. 

28 Ibid. 

29 Ibid. 

30 Zakzanis et al., (2010)

31 Aspen, V., Darcy, A., & Lock, J. (2013). A review of attention biases in women with eating disorders. Cognition & Emotion, 27(5), 820–838. https://doi.org/10.1080/02699931.2012.749777

32 Grau et al., (2019)

33 Ibid. 

34 Zakzanis et al., (2010)

35 Muratore, A. F., & Attia, E. (2021). Current therapeutic approaches to anorexia nervosa: state of the art. Clinical Therapeutics, 43(1), 85–94. https://doi.org/10.1016/j.clinthera.2020.11.006 

36 Lock, J., Grange, D. L., Agras, W. S., Moye, A., Bryson, S. W., & Jo, B. (2010). Randomized clinical trial comparing Family-Based Treatment with Adolescent-Focused individual therapy for adolescents with anorexia nervosa. Archives of General Psychiatry, 67(10), 1025. https://doi.org/10.1001/archgenpsychiatry.2010.128 

37 Muratore & Attia (2021)

38 Ibid. 

39 Ibid. 

40 Ibid. 

41 Eating disorder treatment: Know your options. (2017, July 14). Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/eating-disorders/in-depth/eating-disorder-treatment/art-20046234

42 Weider et al., (2014)

43 Grau et al., (2019) 

44 Stedal et al., (2021) 

45 Ibid. 

Smoking & Struggling: Nicotine Dependence & Co-Morbid Psychiatric Illnesses

Addressing the Addiction

The 2021 National Survey on Drug Use and Health found that among individuals aged 12 and older in the United States, approximately 22.0% report using tobacco or nicotine vaping products in the last 30 days. Further, the 2022 Future Monitoring Survey found that among young people, approximately 8.7% of 8th graders, 15.1% of 10th graders, and 24.8% of 12th graders report using any form of nicotine in the past 30 days.[1] 

While the smoking rates among adults without chronic conditions are significantly reduced over years, the rates remain high among adults with psychiatric disorders.[2] Nicotine dependence especially affects individuals with underlying mental illnesses or cognitive impairments, at a rate of approximately 41% - twice the rate of which the CDC reports for the general population. Many nicotine-dependent individuals have comorbid psychiatric disorders, such as attention-deficit hyperactivity disorder (ADHD), anxiety disorders, and depression.[3]

Nicotine Dependence & Comorbid Psychiatric Disorders 

Smoking is the leading and most preventable cause of death in the United States, which is disproportionately affecting those with psychiatric disorders. By determining the prevalence of nicotine dependence and comorbid psychiatric disorders, smoking cessation efforts can be more focused upon those affected individuals.[4]

Miller (2005) conducted a representative sample study of U.S. adults, to investigate the connection between nicotine dependence and psychiatric disorders. A face-to-face interview conducted according to the DSM-IV interview schedule assessed the dependence on nicotine and the presence of a wide range of psychiatric disorders based on DSM-IV criteria. One of the criteria was whether they used nicotine to alleviate withdrawal symptoms of nicotine. This could be assessed based on four factors:[5]

1. Using nicotine upon waking

2. Using nicotine despite being restricted from its use (e.g., banned in certain locations, activities, events)

3. Using nicotine to avoid withdrawal symptoms

4. Waking up in the middle of the night to use nicotine

The study concluded that a significant correlation exists between individuals with a nicotine dependence and certain Axis I (e.g., alcohol and drug use disorders, major depression, dysthymia, mania, hypomania, panic disorder with and without agoraphobia, social phobia, specific phobia, and generalized anxiety disorder) and Axis II disorders (e.g., avoidant, dependent, obsessive-compulsive, histrionic, paranoid, schizoid, and antisocial PDs).[6] There was an especially strong association to disorders involving alcohol and other drug use, as well as mood disorders such as major depression, specific phobia, antisocial, and paranoid personality disorders.[7] 

Nicotine smoking has also been found that put individuals at an increased risk for suicide, biopolar disorder, and a dose-response relationship has been found between smoking and schizophrenia. In a two-sample Mendelian randomization study conducted by Yuan et. al (2020), the odds ratios of smoking initiation was higher for all seven psychiatric disorders included in the study than for no psychiatric disorder at all. The disorders and odds ratios include 1.96 for suicide attempts, 1.69 for post-traumatic stress disorder, 1.54 for schizophrenia, 1.41 for bipolar disorder, 1.38 for major depressive disorder, 1.20 for insomnia, and 1.17 for anxiety.[8]

The symptoms of ADHD are notably similar to withdrawal symptoms of nicotine. For example, such symptoms include deficits in sustained attention, response inhibition, and working memory. Pomerleau et. al (1995) found in their study that individuals with ADHD are at more risk for smoking due to the similarities in these symptoms, and the quit ratio for smokers with ADHD was 29%, while the quit ratio for smokers with no mental illness was a significantly higher percent of 48.5%. Other studies have also reached similar results, with Lambert and Hartsough (1998) finding tobacco dependence to be 40% in individuals with ADHD, compared to 19% for individuals without ADHD.[9] 

The reason why nicotine dependence affects patients with psychiatric disorders disproportionately higher is because people may attempt to self-medicate to alleviate symptoms of their mental disorders with nicotine. For some, nicotine abstinence may actually worsen symptoms of mental disorders.[10] Moreover, about 20 years ago, major tobacco US manufacturers recognized that a large proportion of their customer population was individuals with underlying psychiatric disorders. Knowing this, they began to craft advertisements and marketing of their nicotine products to target consumers with different psychological needs, such as using nicotine to manage mood, anxiety, stress, anger, social dependence, and insecurity.[11] 

Why is Quitting So Hard? 

Smoking cessation for individuals with psychiatric disorders is significantly more difficult than for healthy individuals for a variety of reasons. For one, smoking increases metabolism against antipsychotic medications. For example, smokers with schizophrenia would then have a lower ratio of serum concentration to dose of antipsychotics. Genetic differences influence which individuals will develop a nicotine addiction upon initial use of the drug. In particular, individuals with a fast metabolism may experience quicker nicotine withdrawal symptoms after being exposed to it, increasing the risk of nicotine dependency. The cessation process also involves addressing the fundamental deficit in cognitive processing that nicotine temporarily resolves. For example, in patients with schizophrenia, this deficit may be the psychotic symptoms.[12] 

Some individuals with a mental health illness may believe that the initial worsened feelings of anxiety and depression, withdrawal symptoms, upon cessation indicate that quitting nicotine will worsen their mental health. However, multiple researchers, such as Wu et. al (2023), have shown that long-term cessation of smoking among people with and without psychiatric disorders improved mental health outcomes. The incorrect psychological perception that smoking relieves stress prevents many people from trying to stop smoking. This distress is simply the cause of nicotine withdrawal, which would eventually end in long-term cessation.[13]

Smokers with a mental illness are also significantly more likely to develop nicotine withdrawal syndrome, where the symptoms of withdrawal are more severe and distressful. This heavy burden of withdrawal also makes it more difficult for a psychiatrically ill patient to quit. This makes nicotine withdrawal an important target for intervention for smokers with a mental illness.[14]

Starting the Journey to Stop Smoking 

Patients with a psychiatric illness and comorbid nicotine dependence are dying 25 years younger than the general population, from smoking-related illnesses such as heart and lung disease.[15] Understanding why these patients smoke, becoming dependent on nicotine, and what we can do to encourage smoking cessation would help prevent these premature mortalities.

Psychosocial support and medication are two types of treatment that have been published by the United States Public Health Service Guidelines in 2000 for general medical patients. However, these treatment types may not be completely suitable or applicable to psychiatric patients as well. Psychosocial support involves cognitive-behavior therapy (CBT) strategies to target identifying smoking cues, breaking the link between smoking and these cues, and learning alternative coping mechanisms. A formal program with other people trying to quit smoking may also contribute to the social aspect of support. Medications for nicotine replacement include bupropion, nortriptyline, clonidine, and varenicline. Identifying what a patient has already tried during their attempts to quit nicotine, as well as their mental and physical reactions to it, can help to determine what the next method of quitting can entail.[16]

If one is trying to quit, it is important to recognize that the cessation process will require constant effort. Overcoming withdrawal symptoms (e.g., feelings of irritability, anger, and depression) can be done by staying active, connected with people, and busy. Anxiety and depression levels are significantly reduced within the first few months of cessation, which means these withdrawal symptoms will decrease automatically, as well.[17] The Centers for Disease Control and Prevention (CDC) (2022) explains withdrawal symptoms that one may experience, and ways to manage them, including:[18] 

• Urges/Cravings

• Medications to quit 

• Avoiding triggers and cues to smoke (people one smokes with, places one smokes, activities one frequently does while smoking)

• Remind oneself why one is quitting

• Irritability/Anger

• Deep breaths

• Meditation

• Therapy

• Restlessness

• Physical activity

• Reducing caffeine intake

• Difficulty Concentrating

• Limiting activities with strong concentration for a short period of time

• Recognizing that this is an effect of nicotine withdrawal

• Trouble Sleeping

• Reducing caffeine, especially near bedtime

• Taking off nicotine patches at least an hour before sleeping

• Reducing electronic device usage

• Adding physical activity during the daytime

• Building a sleep schedule

• Excessive Hunger/Weight Gain

• Snacking smart

• Physical activity

• Mindfulness/focusing on eating while eating

• Anxiety or Depression Symptoms

• Physical activity

• Scheduling and organization

• Social interactions

• Rewarding yourself

• Speaking to a healthcare provider

If one is experiencing nicotine dependence and comorbid psychiatric illnesses, or having severe difficulty with quitting nicotine due to withdrawal symptoms, it is important to reach out to a licensed mental health professional (e.g., a psychotherapist, psychologist or psychiatrist) or healthcare provider for guidance and support. 

Contributed by: Ananya Udyaver

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

References

1 U.S. Department of Health and Human Services. (2023, January 23). What is the scope of tobacco, nicotine, and e-cigarette use in the United States?. National Institutes of Health. https://nida.nih.gov/publications/research-reports/tobacco-nicotine-e-cigarettes/what-scope-tobacco-use-its-cost-to-society  

2 U.S. Department of Health and Human Services. (2023b, February 24). Do people with mental illness and substance use disorders use tobacco more often?. National Institutes of Health. https://nida.nih.gov/publications/research-reports/tobacco-nicotine-e-cigarettes/do-people-mental-illness-substance-use-disorders-use-tobacco-more-often 

3 Kutlu, M. G., Parikh, V., & Gould, T. J. (2015). Nicotine Addiction and Psychiatric Disorders. International review of neurobiology, 124, 171–208. https://doi.org/10.1016/bs.irn.2015.08.004 

4 Grant B.F., Hasin D.S., Chou S.P., Stinson F.S., Dawson D.A. (2004). Nicotine Dependence and Psychiatric Disorders in the United States: Results From the National Epidemiologic Survey on Alcohol and Related Conditions. Arch Gen Psychiatry. 2004;61(11):1107–1115. doi:10.1001/archpsyc.61.11.1107 

5 Ibid. 

6 Ibid. 

7 Ibid. 

8 Yuan, S., Yao, H. & Larsson, S.C. (2020). Associations of cigarette smoking with psychiatric disorders: evidence from a two-sample Mendelian randomization study. Sci Rep 10, 13807 https://doi.org/10.1038/s41598-020-70458-4 

9 Kutlu, M. G., Parikh, V., & Gould, T. J. (2015). 

10 Ibid. 

11 Grant B.F., Hasin D.S., Chou S.P., Stinson F.S., Dawson D.A. (2004). 

12 Gelenberg, A. J., de Leon, J., Evins, A. E., Parks, J. J., & Rigotti, N. A. (2008). Smoking cessation in patients with psychiatric disorders. Primary care companion to the Journal of clinical psychiatry, 10(1), 52–58. https://doi.org/10.4088/pcc.v10n0109 

13 Wu A.D., Gao M., Aveyard P., Taylor G. (2023). Smoking Cessation and Changes in Anxiety and Depression in Adults With and Without Psychiatric Disorders. JAMA Network Open. 6(5):e2316111. doi:10.1001/jamanetworkopen.2023.16111

14 Smith, P. H., Homish, G. G., Giovino, G. A., & Kozlowski, L. T. (2014). Cigarette smoking and mental illness: a study of nicotine withdrawal. American journal of public health, 104(2), e127–e133. https://doi.org/10.2105/AJPH.2013.301502 

15 Gelenberg, A. J., de Leon, J., Evins, A. E., Parks, J. J., & Rigotti, N. A. (2008). 

16 Centers for Disease Control and Prevention. (2023, February 10). People with mental health conditions. Centers for Disease Control and Prevention. https://www.cdc.gov/tobacco/campaign/tips/groups/people-with-mental-health-conditions.html   

17 Ibid.

18 Centers for Disease Control and Prevention. (2022, December 12). 7 common withdrawal symptoms. Centers for Disease Control and Prevention. https://www.cdc.gov/tobacco/campaign/tips/quit-smoking/7-common-withdrawal-symptoms/index.html 

The Impact of Unfulfilled Dreams

The Unrecognized Grief

Grief is an often overwhelming emotion commonly associated with losing a loved one or a personal tragedy. But, what if grief arises from a dream that never materializes or when life continually falls short of expectations? Nonfinite grief occurs when one mourns for what was never realized as opposed to grieving something that has been lost.[1] In terms of duration, nonfinite grief is a continuing presence of loss that may be physical, psychological, and/or emotional.[2] In a world where life's disappointments and unfulfilled hopes can be devastating, understanding nonfinite grief can help people process and comprehend the spectrum of human emotional experiences.[3]

Assumptive World

Throughout a person's lifetime, their early experiences shape their beliefs, expectations, and assumptions about how the world operates. These foundations are influenced by various factors such as culture, people's behaviors, upbringing, and other elements, collectively called the "assumptive world".[4] Conversely, the shattered assumptions theory, introduced by Janoff-Bulman in the context of traumatic experiences, explains that individuals rely on these assumptions about the world and themselves to maintain healthy human functioning.[5] Edmondson et al. (2011) explains that without these assumptions, individuals may face a breakdown of their life narrative and a loss of self-identity, as described in the shattered assumptions theory.[6] The predictable worldview's function is to provide individuals with a sense of purpose, self-worth, and the illusion of invulnerability.[7] 

Conversely, when one’s assumptive world undergoes severe disruptions, individuals can experience nonfinite grief. This grief can manifest from different types of life experiences, as demonstrated by the following examples:

Physical: An athlete has been diligently preparing for a life-changing game. Due to a recent injury, they were rendered ineligible to participate in that pivotal game and left devastated.

Psychological: An individual tirelessly worked towards a promotion at their job. They were passed over, leaving them with a deep sense of disappointment.

Emotional: An individual longs for the day they exchange vows with their long term partner. However, as the years pass, they find themselves single and the dream of marriage seemingly slipping away.

Recognizing the Grief

Grief, when it falls outside of societal norms, can be hard to identify. The Dual Process Model for Non-Death Loss and Grief displays some of the everyday experiences of an individual oscillating between loss orientation and restoration orientation.[8] Wang et al. (2021) explains how loss orientation refers to the focus on coping with the loss itself whereas restoration orientation is a coping strategy that focuses on emotional recovery.[9]

In the Dual Process Model (as shown below) people oscillate between two types of orientation during their every day lives.[10]

In order to try to recognize one’s grief, the following three main factors separate nonfinite grief experiences from grief caused by death:[11]

1. The loss causes a persistent feeling of despair and emptiness from the reality shaped by their previous expectations with their envisioned future.

2. The loss is due to an inability to meet developmental expectations.

3. The loss is intangible, such as a loss of one’s hopes or ideals related to what the individual believes should have, could have, or would have been.

Furthermore, individuals grappling with nonfinite loss, such as erosion of long-cherished hopes and aspirations, often contend with persistent uncertainty regarding what the future holds.[12] A pervasive feeling of helplessness and powerlessness accompanies this ongoing loss, which is often met with little recognition or acknowledgment by others.[13]

Finding new meaning to life

Discovering new meaning to life can feel incredibly challenging especially when initial hopes and expectations were high. Amidst the grieving process, acceptance is more about recognizing that the new reality is permanent rather than merely adjusting.[14] Furthermore, acceptance includes taking a non-judgemental attitude towards oneself rather than labeling the grieving as a negative or positive experience.[15] When grappling with the complexities of grief, specialized therapy such as Complicated Grief Therapy (CGT) can help. This therapy is designed to address intense yearning, persistent longing, intrusive thoughts, and the acceptance of the reality of loss.[16] In addition to alleviating these specific symptoms, CGT also emphasizes the importance of personal growth, nurturing relationships as part of the healing process, and is based on attachment theory.[17] CGT with elements of cognitive-behavioral principles has been shown the most promise for individuals.[18]

An individual in CGT would cover seven core themes spanning over 16 sessions, including:[19]

1. Understanding and accepting grief

2. Managing painful emotions

3. Planning for a meaningful future

4. Strengthening ongoing relationships

5. Telling the story of the loss

6. Learning to live with reminders

7. Establishing an enduring connection with memories of the loss

Although 16 sessions is recommended, CGT is a flexible program. 

Another valuable approach for addressing grief is Acceptance and Commitment therapy (ACT).[20] Similarly to CGT, ACT uses core themes for individuals to work through their loss and life transitions including:[21]

1. Acceptance or willing to experience negative emotions or thoughts

2. Cognitive defusion

3. Contact with the present moment 

4. Self as context

5. Values

6. Committed Action
   

Malmir et al. (2017) explored the effectiveness of ACT for grieving individuals between the ages of 20 and 40 who were experiencing a range of symptoms, including anxiety, shortness of breath, illusion, and sleep disturbances.[22] The before and after outcomes were evaluated using a questionnaire designed to gauge the participant’s level of hope and anxiety.[23] The results of ACT therapy showed a significant reduction in symptoms among the eleven women and six men who received therapy compared to the ten women and seven men who did not.[24] The effectiveness of this modality in terms of healing from grief comes from increased cognitive flexibility, which is the main component of ACT.

If you or someone you know are experiencing nonfinite grief and loss that is impacting daily life and overall well-being, please reach out to a licensed mental health professional (e.g., a psychotherapist, psychologist or psychiatrist) for additional guidance and support.

Contributed by: Kelly Valentin

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

REFERENCES

1 Bruce, E. J., & Schultz, C. L. (2001). Nonfinite Loss and Grief: a psychoeducational approach. https://openlibrary.org/books/OL8601025M/Nonfinite_Loss_and_Grief

2 Neimeyer, R. A., Harris, D. L., Winokuer, H. R., & Thornton, G. (2021). Grief and bereavement in contemporary society: Bridging Research and Practice. Routledge.

3 Harris, D. L. (2011). Counting our losses: Reflecting on Change, Loss, and Transition in Everyday Life. Routledge.

4 Parkes, C. M. (1971). Psycho-social transitions: A field for study. Social Science & Medicine. https://doi.org/10.1016/0037-7856(71)90091-6

5 Edmondson, D., Chaudoir, S. R., Mills, M. A., Park, C. L., Holub, J., & Bartkowiak, J. (2011). From shattered assumptions to weakened worldviews: trauma symptoms signal anxiety buffer disruption. Journal of Loss & Trauma. https://doi.org/10.1080/15325024.2011.572030

6 Ibid.

7 Ibid.

8 Harris (2011)

9 Wang, W., Song, S., Chen, X., & Yuan, W. L. (2021). When learning goal orientation leads to learning from failure: the roles of negative emotion coping orientation and positive grieving. Frontiers in Psychology. https://doi.org/10.3389/fpsyg.2021.608256

10 Stroebe, W., Schut, H., & Stroebe, M. S. (2005). Grief work, disclosure and counseling: Do they help the bereaved?. https://doi.org/10.1016/j.cpr.2005.01.004

11 Harris (2011)

12 Bruce, E. J., & Schultz, C. L. (2001). Nonfinite Loss and Grief: a psychoeducational approach. https://openlibrary.org/books/OL8601025M/Nonfinite_Loss_and_Grief

13 Ibid.

14 Cianfrini, L. R., Richardson, E. J., & Doleys, D. (2021). Pain psychology for clinicians: A Practical Guide for the Non-Psychologist Managing Patients with Chronic Pain. Oxford University Press.

15 Ibid.

16 Wetherell, J. L. (2012). Complicated grief therapy as a new treatment approach. Dialogues in Clinical Neuroscience. https://doi.org/10.31887/dcns.2012.14.2/jwetherell

17 Ibid.

18 Ibid.

19 Iglewicz, A., Shear, M. K., Reynolds, C. F., Simon, N. M., Lebowitz, B. D., & Zisook, S. (2019). Complicated grief therapy for clinicians: An evidence‐based protocol for mental health practice. https://doi.org/10.1002/da.22965

20 Speedlin, S., Milligan, K., Haberstroh, S., & Duffey, T. (2016). Using acceptance and commitment therapy to negotiate losses and life transitions. Research Gate.

21 Bohlmeijer, E. T., Fledderus, M., Rokx, T., & Pieterse, M. E. (2011). Efficacy of an early intervention based on acceptance and commitment therapy for adults with depressive symptomatology: Evaluation in a randomized controlled trial. https://doi.org/10.1016/j.brat.2010.10.003

22 Malmir, T., Jafari, H., Ramezanalzadeh, Z., & Heydari, J. (2017). Determining the effectiveness of acceptance and commitment therapy (ACT) on life expectancy and anxiety among bereaved patients. https://doi.org/10.5455/msm.2017.29.242-246

23 Ibid.

24 Ibid. 

Mind-Body Therapies for Improving Mental Health

Mind Over Matter

Mind-body therapies, also known as complementary health approaches (CHAs) are a diverse group of healthcare practices and healing techniques focused on the integration of mind, body, brain, and behavior.[1] While mind-body therapies treat a variety of acute and chronic health conditions, there has been renewed interest in ancient traditions, such as yoga and meditation, to treat mental health conditions like depression and anxiety.

These therapies serve as complementary adjuncts to conventional forms of mental health treatment. “Complementary” medicine differs from “alternative” medicine in the sense that complementary medicine is utilized together with other forms of medicine whereas alternative medicine serves as a complete replacement. While both have historically drawn some skepticism as their origins lie outside of typical Western modes of treatment, complementary medicine has been shown to effectively bridge various forms of therapy in a coordinated way. Moreover, mind-body therapy provides a low intensity and accessible therapy and treatment option for a wide variety of individuals, including those in marginalized populations and disadvantaged individuals who may not otherwise receive mental health treatment.[2] 

Health Benefits 

The goal of mind body therapy is to lower levels of stress hormones to improve overall health and reduce risk of chronic illness. With heightened levels of stress, one is at greater risk for several diseases including high blood pressure, heart irregularities, anxiety, insomnia, persistent fatigue, digestive disorders, diminished fertility, and diabetes.[3] 

Mount Sinai’s Icahn School of Medicine states that mind-body techniques can encourage relaxation, improve coping skills, reduce tension and pain, and lessen the need for medication.[4] Specifically related to improvements in mental health, it has been posited that mind-body practices can foster a sense of control, increase optimism, and provide social support that improves one’s quality of life and reduce symptoms related to depression and anxiety.[5] In addition, the National Center for Complementary and Integrative Health (NCCIH) believes that multiple modes of treatment can better treat the whole person rather than administering a treatment for one single organ.[6]

Types of Mind-Body Therapies

There are several types of Mind-Body Therapy as defined by the NCCIH, however the most popular are yoga, tai-chi, and qigong, followed by meditation and massage therapy.[7,8] 

Low-Intensity & Movement-Based: 

1. Yoga: Yoga has its origins in an ancient healing practice in India known as Ayurveda, and draws upon the intersection of movement through postures, mindful breathing and meditation, and well as an emphasis on personal and spiritual growth. A typical yoga practice moves through a series of poses to help strengthen the physical body as well as establish a stronger connection to one’s own interiority (i.e., mind to muscle connection). Yoga is one of the most utilized and effective forms of mind-body therapy. It has been shown to increase feelings of relaxation, improve self-confidence and body image, and induce feelings of optimism and well-being.[9] 

2. Tai Chi: Tai chi has its roots in ancient Chinese philosophy and traditional medicine theory that focuses primarily on controlling breath and internal energy. Tai chi features specific exercises that improve balance, mobility, and stamina and is also effective in treating stress and anxiety disorders through the encouragement of bodily awareness. Tai chi has been posited to have similar effects to Cognitive Behavioral Therapy (CBT), specifically in its ability to treat insomnia. A study by Raman et al. (2013) showed that older adults with chronic conditions who practiced tai chi reported improved sleep quality and better psychological well-being.[10]

3. Qigong: Qigong is an ancient Chinese healing practice which integrates bodily movements and muscle relaxation with breathing techniques and meditation that strengthen one’s connection to their internal vital energy force. Qigong can stabilize both sympathetic and parasympathetic nervous system activity in order to reduce blood pressure and feelings of stress and anxiety. Related to improvements in cognitive function, qigong has been shown to improve both processing speed and sustained attention in older adults.[11]

Encourage Physical & Mental Relaxation:  

1. Acupuncture: Acupuncture has its roots in traditional Chinese medicine and healing systems. This practice draws from the belief that one’s qi or energy (similar to the energetic life force which generates the movements of qi-gong) flows along channels that connect different parts of the body in a synergetic way. When this energy becomes stagnant, individuals may experience pain or psychological distress related to anxiety, depression, and insomnia. Acupuncture stimulates areas of the brain known to reduce sensitivity to pain and stress as well as promote relaxation by activating the parasympathetic nervous system, which initiates the relaxation response.[12]

2. Aromatherapy: Aromatherapy utilizes the scent of plant oils and extracts to promote relaxation by engaging specific brain pathways.[13] Since olfactory smell receptors have signaling pathways connected to the brain, aromatherapy engages the parasympathetic nervous system to promote relaxation and also encourages the brain to produce more chemicals like serotonin or dopamine which are primarily responsible for controlling mood.[14] Memorial Sloan Kettering Cancer Center notes that aromatherapy using lavender or sweet marjoram may help anxiety. Additionally, they found that aromatherapy combined with massage was preferred to cognitive behavior therapy, but with similar benefits on lessening distress in cancer patients.[15]

3. Massage: Massage therapy promotes circulation, muscle relaxation, and alleviates stress through the manipulation of muscles and soft tissues in the body. It has also been posited that massage therapy can lower the production of the stress hormone cortisol in the body while releasing serotonin to boost mood and feelings of well-being. In addition to regulating breathing and improving sleep, the Mayo Clinic Health System notes that massage can help alleviate stress, anxiety, depression, nausea, pain, fatigue, and insomnia in cancer patients.[16] 

4. Meditation: Meditation is a widely used and empirically-proven effective therapy technique focused on the reestablishment of mind to body and breath. While it is relatively easy to implement a few minutes of meditation into one’s daily routine, meditation therapy is often offered as a structured 8 week program known as mindfulness-based stress reduction (MBSR). Meditation has been shown to improve mental functioning, self-awareness, mood, and well-being. The most common goals of meditation include inner calmness, physical relaxation, psychological balance, and improved vitality and coping.[17]

5. Guided Imagery: Guided imagery involves the recreation of mental imagery, sounds, and smells to ease anxiety and reduces feelings of depression, stress, fatigue, and discomfort. Practicing visualization and utilizing mental imagery can elicit a positive mood and greater feelings of calm and joy. Guided imagery is often used in conjunction with or implemented into meditation or yoga sessions with the help of a licensed instructor. For example, in a typical session, the practitioner helps the client enter a state of deep relaxation via breathing techniques, music, and/or progressive muscle relaxation in a quiet environment.[18]

The mind-body therapies listed above are all unique and vary widely in terms of their mechanism of action and origin, however, all of these therapies are considered low-intensity and sustainable practices that promote well-being, mental and physical relaxation, and a stronger connection to one’s body.[19] With guidance from licensed professionals, these therapies can effectively address the social, spiritual, and behavioral factors in one’s personal life in order to elicit better mental health. 

Contributed by: Kaylin Ong

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

references

1 Integrative Medicine: About Mind-Body Therapies | Memorial Sloan Kettering Cancer Center. (n.d.). Www.mskcc.org. https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/mind-body 

2 Burnett-Zeigler, I., Schuette, S., Victorson, D., & Wisner, K. L. (2016). Mind–Body Approaches to Treating Mental Health Symptoms Among Disadvantaged Populations: A Comprehensive Review. Journal of Alternative and Complementary Medicine, 22(2), 115–124. https://doi.org/10.1089/acm.2015.0038

3 Mind-Body Therapies | Taking Charge of Your Health & Wellbeing. (2016). Taking Charge of Your Health & Wellbeing. https://www.takingcharge.csh.umn.edu/explore-healing-practices/what-are-mind-body-therapies 

4 Mind-body medicine Information | Mount Sinai - New York. (n.d.). Mount Sinai Health System. https://www.mountsinai.org/health-library/treatment/mind-body-medicine#:~:text=What%20is%20mind%2Dbody%20medicine%20good%20for%3F 

5 Mind-Body Therapies | Taking Charge of Your Health & Wellbeing. (2016)

6 National Center for Complementary and Integrative Health. (n.d.). NCCIH. https://www.nccih.nih.gov/ 

7 Ibid.

8 Integrative Medicine: About Mind-Body Therapies | Memorial Sloan Kettering Cancer Center. (n.d.). Www.mskcc.org. https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/mind-body 

9 Woodyard, C. (2011). Exploring the therapeutic effects of yoga and its ability to increase quality of life. International Journal of Yoga, 4(2), 49–54. https://doi.org/10.4103/0973-6131.85485 

10 Vincent J Minichiello, Y. Z. (2013). Tai Chi Improves Sleep Quality in Healthy Adults and Patients with Chronic Conditions: A Systematic Review and Meta-analysis. Journal of Sleep Disorders & Therapy, 02(06). https://doi.org/10.4172/2167-0277.1000141 

11 Qi, D., Wong, N. M. L., Shao, R., Man, I. S. C., Wong, C. H. Y., Yuen, L. P., Chan, C. C. H., & Lee, T. M. C. (2021). Qigong exercise enhances cognitive functions in the elderly via an interleukin-6-hippocampus pathway: A randomized active-controlled trial. Brain, Behavior, and Immunity. https://doi.org/10.1016/j.bbi.2021.04.011 

12 Anxiety. (n.d.). British Acupuncture Council. Retrieved October 17, 2023, from https://acupuncture.org.uk/fact-sheets/anxiety-and-acupuncture-factsheet/ 

13 Aromatherapy: Do essential oils really work? (2019). John Hopkins Medicine. https://www.hopkinsmedicine.org/health/wellness-and-prevention/aromatherapy-do-essential-oils-really-work 

14 Camille Noe Pagán. (2018, January 11). What Is Aromatherapy? WebMD; WebMD. https://www.webmd.com/balance/stress-management/aromatherapy-overview 

15 Aromatherapy. (2016). Memorial Sloan Kettering Cancer Center. https://www.mskcc.org/cancer-care/integrative-medicine/therapies/aromatherapy 

16 Massage helps anxiety, depression. (n.d.). Mayo Clinic Health System. https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/massage-for-depression-anxiety-and-stress 

17 Grossman, P., Niemann, L., Schmidt, S., & Walach, H. (2004). Mindfulness-based stress reduction and health benefits. Journal of Psychosomatic Research, 57(1), 35–43. https://doi.org/10.1016/s0022-3999(03)00573-7  

18 Guided Imagery | Memorial Sloan Kettering Cancer Center. (n.d.). Www.mskcc.org. https://www.mskcc.org/cancer-care/integrative-medicine/therapies/guided-imagery 

19 Mind-Body Therapies. (n.d.). Crohn’s & Colitis Foundation. Retrieved October 17, 2023, from https://www.crohnscolitisfoundation.org/complementary-medicine/mind-body-therapies#:~:text=Mind%2Dbody%20therapies%20focus%20on 

How Birth Order and Sibling Relationships Shape Our Personality

Typical Traits Related to Birth Order

Approximately 80% of children in the United States grow up with at least one sibling[1], which makes us consider: how does having a sibling affect a child’s social development and personality? 

Comprehensive MedPsych Systems (2023) built a very thorough description and explanation for the traits that are often associated with each birth order. While these will not be applicable to everyone and all families, they are commonalities found among a family’s oldest child, middle children, youngest child and children without siblings based on parenting style and familial structure.

For example, a family’s oldest child (i.e., firstborns) are often responsible, independent, perfectionistic, rule-followers, role models, and hard workers. These traits are often developed from the attention that firstborns receive due to being the only child, as well as the care that first-time parents generally have with their oldest children. Parenting can be extremely scary and difficult; therefore, first-time parents are typically stricter.  Further, because this is their only child, they are able to devote all of their attention to this child. As siblings are introduced into the family, older children tend to develop leadership skills and responsibility as they are deemed as role models, often helping with household tasks (e.g., babysitting, chores).[2]

Middle children are often diplomatic, adaptable, funny, creative, sociable, rebellious, and competitive. These children are often trying to compete for attention with their other siblings and tend to be typically very flexible and more comfortable “going with the flow”. Middle children also have the unique experience of being the youngest child for some time before another sibling is born, but then can experience a shift toward the character of an older sibling, especially if there is a large age gap between them and the first-born.[3,4]

Youngest children are often outgoing, dependent, easy-going, mischievous, and free-spirited. They are typically deemed “the baby of the family” because they are not only the youngest, but also receive more attention from their parents as their siblings get older. Additionally, they tend to receive a more lenient and laid-back parenting style as third-time parents become more comfortable parenting. Dr. Catherine Salmon, a professor of psychology at the University of Redlands and co-author of The Secret Power of Middle Children, explains that “In general, high agreeableness, extraversion (the social dimension) and openness are associated with youngest children, and sometimes low conscientiousness due to lack of responsibilities and parental indulgence over expectations.”[5]

An only child shares many traits with first borns such as independence and leadership, but they are also known to be mature, loyal, sensitive, and confident. They are typically raised with their parent’s full attention, and as an only child, may be raised with higher expectations and pressure.[6] Krynen (2011) notes that the intelligence and motivation achievement scores are significantly higher, and they typically complete more years of education as well as obtain more prestige than those with siblings. Only children are also known to be very creative and imaginative, as they often spend more time alone and therefore, are more likely to invent imaginary friends or scenarios.[7] 

The Effect of Siblings on a Child’s Social Development

Sibling relationships are often vastly underestimated in their importance. While research often evaluates the effects of parental behavior on children’s development, their sibling relationships are often overlooked. However, Dr. Shawn Sidhu from the University of New Mexico, explains that siblings are often consistent sources for support and aid in the development of positive emotional competence because we share more information and confide in our siblings more often than we do our parents, specifically regarding topics such as friendships, relationships, and school.[8] 

Siblings also appear to one another as consistent sources for support and help children learn how to manage conflict and various socio-emotional skills at a young age, while many children without siblings don’t learn these behaviors until preschool or kindergarten. McHale et al. (2012) explains, “Through their conflicts, for example, siblings can develop skills in perspective taking, emotion understanding, negotiation, persuasion, and problem solving. Notably, these competencies extend beyond the sibling relationship and are linked to later social competence, emotion understanding, and peer relationships. In adolescence, siblings also contribute to positive developmental outcomes, including prosocial behavior, empathy, and academic engagement.”[9] McHale also confirms that those with close sibling relationships often have better mental health, better psychological health, and better social relationships.[10] Furthermore, even if siblings struggle to get along as kids, psychologist Jill Suttie (2022) explains that sibling relationships do change throughout their lifetime and often siblings become closer as they reach and extend into adulthood.[11]

While there are many positive effects that siblings can have on a child’s development, there are also some negative effects that can occur depending on the circumstances. Because a child is often surrounded by their siblings more than almost anyone else, an unhealthy or toxic sibling relationship can have detrimental effects on a child’s social development. Since siblings are often seen as support systems and are consistent in a child’s life, bullying from a sibling can be more devastating than peer bullying, as their home is no longer an escape.[12] 

Furthermore, psychiatrist Shawn Sidhu explains that children are often compared to their siblings in academic or athletic settings by coaches, teachers, and peers, which can lead to children internalizing their incompetence in comparison. This causes lower self-esteem, and can drive a wedge in their sibling relationship.[13]

Lastly, since older siblings are often role models for their younger siblings, negative or unhealthy behavior by the older siblings can introduce and encourage bad behavior for younger siblings.[14] Suttie (2022) explains, “Research confirms that if siblings have hostile or conflicted relationships when young, it can increase their risks of suffering anxiety, depressive symptoms, and even risky or antisocial behavior later in adolescence.”[15]

While several debates remain regarding which situation is better for a child’s development, having siblings or being an only child both have their unique sets of pros and cons. Additionally, while research has found that a person’s birth order tends to predict specific traits in each child due to both different parenting techniques and sibling competition, these traits are also affected by a slew of environmental factors such as the child’s age, sibling age gap, and family income.[16]

If you or someone you know would like to learn more about or are struggling with their family dynamic, please reach out to a licensed mental health professional (e.g., a psychotherapist, psychologist or psychiatrist) for additional guidance and support.

Contributed by: Kendall Hewitt

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

References

1 Weir, K. (2022). Improving Sibling Relationships. American Psychological Association, 53(2). 

https://www.apa.org/monitor/2022/03/feature-sibling-relationships#:~:text=Sibling%20warmth%20and%20support%20in,review%20of%20sibling%20dynamics%20in

2 What Your Sibling Birth Order Reveals About Your Personality Traits (Even If You’re an Only Child). (2023). Comprehensive MedPsych Systems. https://www.medpsych.net/2021/08/19/what-your-sibling-birth-order-reveals-about-your-personality-traits-even-if-youre-an-only-child/

3 Ibid.

4 Shanley, S. (2015). What Happens When The Youngest Child Becomes the Middle Child. The Washington Post. https://www.washingtonpost.com/news/parenting/wp/2015/03/23/what-happens-when-the-youngest-child-becomes-the-middle-child/ 

5 Comprehensive MedPsych Systems (2023)

6 Ibid.

7 Krynen, C. (2011). The Rise of Single-Child Families: Psychologically Harming the Child?  Intuition: The BYU Undergraduate Journal of Psychology, 7(1)(3). https://scholarsarchive.byu.edu/cgi/viewcontent.cgi?article=1191&context=intuition

8 Sidhu, S. (2019). The Importance of Siblings. The University of New Mexico Health Sciences Newsroom. https://hsc.unm.edu/news/news/the-importance-of-siblings.html

9 McHale, SM., Updegraff, KA., & Whiteman, SD. (2012). Sibling Relationships and Influences in Childhood and Adolescence. J Marriage Fam, 74(5), 913-930. doi:10.1111/j.1741-3737.2012.01011.x

10 Suttie, J. (2022). How Your Siblings Can Make You Happier. The Greater Good Science Center at the University of California, Berkeley. https://greatergood.berkeley.edu/article/item/how_your_siblings_can_make_you_happier 

11 Ibid.

12 Sidhu (2019)

13 Ibid.

14 Ibid. 

15 Suttie (2022)

16 Comprehensive MedPsych Systems (2023)

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