Identifying Autism Spectrum Disorder in Undiagnosed Adults

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Identifying autism spectrum disorder in undiagnosed adults

By Laura Foran Lewis, PhD, RN syndrome, pervasive develop- “odd” without anyone recognizing mental disorder, and autistic their behaviors as symptoms of Autism spectrum disorder (ASD) disorder.4 Now, a single diagnosis ASD. For middle-aged and older affects 1 in 59 children and the of ASD captures all of these adults, a lack of awareness and a latest prevalence studies estimat- profi les. changing defi nition of ASD may ing that 1 in 100 adults are ASD occurs on a spectrum, so have contributed to missed affected.1,2 Many adults with some individuals show symptoms diagnosis during childhood. ASD are undiagnosed and present of extreme impairment (for Autism was not recognized in the in primary care offi ces without example, being unable to speak DSM until 1980, and even then, it knowing they are on the ASD or having an absence of interest was only recognized as “infantile spectrum. Experts estimate that in social relationships), whereas autism.”9 for every three diagnosed cases others show only mild external Asperger syndrome, which of ASD, there are two additional symptoms and experience primar- identifi ed milder cases on the undiagnosed cases.3 This brief ily internal symptoms (for exam- autism spectrum, was not added overview describes how individu- ple, high levels of social anxiety to the DSM until 1994.9 There- als with ASD can be identifi ed in and/or depression). fore, many adults grew up during a time when parents, educators, and HCPs were not likely aware Experts estimate that for every three diagnosed cases of of symptoms of ASD in children ASD, there are two additional undiagnosed cases. without intellectual impairment. Some may have been misdiagnosed with other conditions (for primary care settings and to guide It is worth mentioning that example, obsessive-compulsive healthcare providers (HCPs) in intellectual disability is not a disorder, attention-defi cit determining next steps when they characteristic of ASD. Although it hyperactivity disorder) or may suspect undiagnosed ASD in adult is a common comorbidity, have had parents who were patients. approximately half of individuals unwilling to pursue diagnosis with ASD have average to above during childhood due to fear of ■ What is ASD? average intelligence.5 Many stigma and discrimination.10 ASD is a neurodevelopmental individuals with ASD are able to Still, others with mild symp- disorder that is characterized by live independently, fi nd employ- toms and suffi cient social sup- impairment in social skills, ment, and engage in romantic ports may not have shown signs repetitive patterns of behavior, relationships.6-8 of impairment until later years sensory issues, and restricted when social demands increased. interests that affect the individu- ■ Presentation of ASD in adults For example, a young adult may al’s ability to function in social, Even though symptoms are begin to show defi cits after occupational, or other settings.4 present beginning in early moving out of his or her parents’ The Diagnostic and Statistical developmental stages, there are home, when he or she becomes Manual of Mental Disorders, Fifth many reasons that adults with responsible for managing his or Edition (DSM-5) eliminated the ASD are not diagnosed during her own schedule, and needs to subcategories of ASD, which were childhood. These individuals may adjust to new living arrangements. previously known as Asperger be viewed as being “quirky” or Therefore, although symptoms

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Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved. Mental Health Matters might have existed during 12-15 childhood, impairment might Examples of ASD symptoms in adults have seemed to appear for the Challenges • Lack of fi lter when speaking, which may come fi rst time during adulthood. with expressive across as rude at times College educators, roommates, communication • Flat affect or monotonous tone in voice, so that signifi cant others, or employers infl ection does not match feelings • Diffi culty maintaining conversation, particularly may be the fi rst to recognize signs small talk (may respond with inappropriately short of ASD. answers to questions or engage in long mono- Symptoms that are consid- logues), and diffi culty staying on topic • ered classic for autism in chil- Some language may seem rehearsed or scripted • Avoids eye contact or may use inappropriately dren are often not present in intense eye contact adults with ASD, especially in • Diffi culties identifying or articulating own thoughts individuals who were undiag- and feelings • Recalls names, facts, and/or other trivial information nosed in childhood. Adults may Diffi culty • Diffi culty reading nonverbal communication, such as learn behaviors that help them interpreting facial expression s, body language, and social cues mask symptoms, such as mim- communication • Diffi culty understanding the intentions, thoughts, icking small talk or rehearsing and feelings of others • conversation topics prior to Takes things literally and struggles to understand fi gurative language social engagement. Just because Restricted repeti- • Insists on sameness or routine and experiences an individual may appear to blend tive behaviors or stress when that routine is disrupted in socially does not necessarily interests • Intense interest in a particular hobby, object, or rule them out for a diagnosis area of study of ASD. – This may be an interest in something general or very specifi c, abnormal in its topic of focus, and/ Females in particular may be or the extent of the obsession able to camoufl age symptoms so Hypersensitivity • Easily distracted by sensory stimuli (sound of clock they are not outwardly detectable or hyposensitivity ticking or light fl ickering) but may describe feeling a sense to sensory stimuli • Displays self-stimulatory behavior (also known as “stimming”) of social isolation or intense –This is a repetitive motor movement or sound used social anxiety.11 These internal to regulate sensory input. While hand-fl apping may symptoms should not be ignored be more classic in children, adults often learn to and warrant screening for ASD adapt and hide this behavior. For example, stimming may manifest in adults as a repetitive rubbing (see Examples of ASD symptoms of the hands on the thighs, rubbing fi ngers together in adults).12-15 inside a pocket, or foot-tapping • Prefers to dress in a way that is comfortable, even if it is not necessarily appropriate to the setting ■ Disclosing a suspected (may wear clothes that do not match, for instance, diagnosis may wear a T-shirt to a formal event) There is no “cure” or treatment Internalized • Discomfort during conversation, social anxiety, for ASD, but there are benefits to symptoms social phobia, or exhaustion after social activity • individuals of all ages in discov- that may not Challenges regulating emotion and may be be outwardly prone to emotional outbursts (“meltdowns”) or ering a diagnosis. Even in mild apparent to retreating and blocking out all surroundings cases, a diagnosis of ASD can (“ shutdowns”) improve the quality of life and • Anxiety and/or depression mental health outcomes for Other common • Challenges planning, organizing, or maintaining 16 symptoms focus (may arrive late to appointments or miss adults with ASD symptoms. appointments Individuals who are unaware of • Irregular sleep patterns their diagnosis often falsely • Clumsy gait or poor physical coordination believe there is something wrong This table provides examples of how ASD may manifest in adults, focusing primarily on adults with no with them or view their social intellectual disability. This list is not exhaustive and is not intended to be used as a diagnostic tool. challenges as personal failures. www.tnpj.com The Nurse Practitioner • September 2018 15

Learning about ASD can as reasons not to disclose or may be receptive to learning provide explanations for behav- pursue a diagnosis of ASD when more or may even confess that iors that those with ASD are suspected. they have suspected a diagnosis already aware of and offers When sharing a suspected themselves. opportunities to better identify diagnosis with a patient, it may Adults with ASD are often and leverage strengths and help to frame the diagnostic aware of their social challenges weaknesses.7 Young adults may be criteria for an ASD diagnosis in a even if they are not aware of ASD. able to receive educational and/or positive light, such as those With time to process, adults may employment accommodations, criteria written by Purkis or experience grief as they adjust to a make adjustments in living Attwood and Gray.18,19 Patients new view of self, anger that the diagnosis was not recognized earlier, and/or relief that the Adults with ASD are often aware of their social challenges diagnosis explains information even if they are not aware of ASD. they already knew about person- ally.7 HCPs should plan to follow up with their patients within 2 to situations to limit excess socializa- should be invited to see the 6 weeks after sharing a suspicion tion, and make career choices strengths and possibilities a or diagnosis of ASD; this time based on their own strengths and diagnosis can offer. HCPs should should be used to discuss how weaknesses. Older adults may plan to provide plenty of positive patients are processing this new benefi t from the opportunity for resources and information for information and to answer any life review and understanding the patients and their family mem- questions. impact of ASD on current and bers to explore as they learn past relationships. more about ASD as well as ■ Formal diagnosis of ASD Adults of all ages may benefi t websites for community support A formal diagnosis may be made from joining online support (see ASD resources and support by any HCP with credentials and groups, which allow the sharing of communities). expertise to make a diagnosis, experiences while minimizing the HCPs should be prepared for including NPs. That being said, anxieties of face-to-face interac- a range of reactions when dis- ASD is often misdiagnosed and tions. Counseling and manage- closing a suspicion of ASD. The may be particularly diffi cult to ment of frequently co-occurring patient may view this as an insult identify in adults, so primary symptoms, such as anxiety, and may initially be offended, care HCPs may prefer to make depression, and suicidal thoughts, particularly if they have negative a referral to a mental health is also warranted.17 With this in misperceptions about what a professional, such as a neuropsy- mind, HCPs should never view diagnosis of ASD means. The chologist or psychiatrist, for age, lack of available treatment, or patient may also immediately neuropsychological testing.20 presence of only mild symptoms dismiss these suspicions. Others Ideally, adults should be referred to professionals who specialize in ASD resources and support communities adults with ASD, but there are few clinicians with this particular Organization Website specialty. Academic-Autistic Spectrum Partnership www.autismandhealth.org The Asperger/Autism Network in Research and Education (AASPIRE) offers a national directory of adult Healthcare Toolkit ASD specialists, and other Asperger/Autism Network www.aane.org regional organizations may also Autistic Self Advocacy Network www.autisticadvocacy.org Reddit: Aspergers Subreddit www.reddit.com/r/aspergers be useful in fi nding practitioners who specialize in adult ASD.12 If Twainbow www.twainbow.org such a practitioner cannot be Wrong Planet www.wrongplanet.net found, many developmental

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pediatricians and child psychia- A formal diagnosis may also be 6. Farley MA, McMahon WM, Fombonne E, et al. Twenty-year outcome for individuals with trists with ASD specialties are also an important milestone for autism and average or near-average cognitive willing to evaluate adults. individuals who continue to doubt abilities. Autism Res. 2009;2(2):109-118. 7. Lewis LF. Realizing a diagnosis of autism When making a referral, or question their self-perception spectrum disorder as an adult. Int J Ment Health patients should be advised on as it relates to ASD.16 For those Nurs. 2016;25(4):346-354. what to expect at the appoint- who decide not to seek a formal 8. Tobin MC, Drager KDR, Richardson LF. A systematic review of social participation for ment. Patients should be diagnosis, those individuals adults with autism spectrum disorders: support, social functioning, and quality of life. Res Autism informed that testing may include should be empowered to embrace Spectr Disord. 2014;8(3):214-229. a conversation with the diagnosti- a self-diagnosis, as it assists them 9. Verhoeff B. Autism in fl ux: a history of the concept from Leo Kanner to DSM-5. Hist cian, being observed while in gaining self-awareness and Psychiatry. 2013;24(4):442-458. undergoing specifi c tasks, and/or acceptance. HCPs should provide 10. Lewis LF. A mixed methods study of barriers to answering oral, written, or information and resources and formal diagnosis of autism spectrum disorder in adults. J Autism Dev Disord. 2017;47(8):2410- computerized questions regarding offer a referral for counseling to 2424. their abilities, behaviors, thoughts, assist the individual in coping 11. Rynkiewicz A, Schuller B, Marchi E, et al. An investigation of the ‘female camoufl age effect’ in feelings, and experiences. with a new self-perception. autism using a computerized ADOS-2 and a test HCPs should advise patients of sex/gender differences. Mol Autism. 2016;7:10. to bring a family member or ■ Conclusion 12. Asperger/Autism Network. 2018. www.aane.org. 13. Kim C. I Think I Might be Autistic: A Guide to friend (particularly someone HCPs must be aware that there are Autism Spectrum Disorder Diagnosis and Self- who knew the patient from an many adults who do not know that Discovery for Adults. N.p: Narrow Gauge; 2013. 14. Stanford A. Asperger Syndrome (Autism early age) who can share more they have ASD who present in Spectrum Disorder) and Long-Term Relation- ships. 2nd ed. Philadelphia, PA: Jessica Kingsley information. This person may primary care offi ces undiagnosed. Publishers; 2015. provide support as well as Symptoms typically manifest 15. Wylie P. Very Late Diagnosis of Asperger perspective on the patient’s social differently in adults than in Syndrome. Philadelphia, PA: Jessica Kingsley Publishers; 2014. skills and past experiences. children and may be more subtle 16. Lewis LF. Exploring the experience of self- Patients should be informed that and internal. Knowledge of ASD diagnosis of autism spectrum disorder in adults. Arch Psychiatr Nurs. 2016;30(5):575-580. diagnosis is often a long process can have a signifi cant positive 17. Cassidy S, Bradley P, Robinson J, Allison C, and may involve several visits impact on the lives of those with McHugh M, Baron-Cohen S. Suicidal ideation and suicide plans or attempts in adults with with a professional. Patients ASD and their families. If a patient Asperger’s syndrome attending a specialist should also be offered support by is suspected of having ASD, the diagnostic clinic: a clinical cohort study. Lancet Psychiatry. 2014;1(2):142-147. following up during this process HCP should carefully but directly 18. Purkis J. The DSM 5 autism criteria—rewrit- and offering resources with more disclose this information and assist ten with neurodiversity in mind. 2015. https:// jeanettepurkis.wordpress.com/2015/03/12/ information while they seek the individual with fi nding appro- the-dsm-5-autism-criteria-rewritten-with- additional counseling. priate support for next steps. neurodiversity-in-mind. 19. Attwood T, Gray C. The discovery of “aspie” Some adults are satisfi ed with REFERENCES criteria. Tony Atwood website. 2018. www. a self-diagnosis only. HCPs tonyattwood.com.au/index.php?option=com_ 1. Brugha TS, McManus S, Bankart J, et al. content&view=article&id=79:the-discovery-of- should be aware that health insur- Epidemiology of autism spectrum disorders in aspie-criteria. adults in the community in England. Arch Gen ance coverage for ASD diagnoses Psychiatry. 2011;68(5):459-465. 20. Van Schalkwyk GI, Peluso F, Qayyum Z, McPart- land JC, Volkmar FR. Varieties of misdiagnosis can vary, and cost may be a 2. Centers for Disease Control and Prevention. Au- in ASD: an illustrative case series. J Autism Dev tism and developmental disabilities monitoring Disord. 2015;45(4):911-918. signifi cant obstacle to formal (ADDM) network. CDC website. 2018. www. cdc.gov/ncbddd/autism/addm.html. 21. Social Security Administration. 2018. www.ssa. diagnosis. HCPs should assist gov/. 3. Baron-Cohen S, Scott FJ, Allison C, et al. individuals in weighing the Prevalence of autism-spectrum conditions: potential costs and benefi ts of a UK school-based population study. Br J Psy- chiatry. 2009;194(6):500-509. Laura Foran Lewis is an assistant professor at the formal diagnosis. For example, a 4. American Psychiatric Association. Diagnostic University of Vermont, Department of Nursing, formal diagnosis is necessary for and Statistical Manual of Mental Disorders. 5th Burlington, Vt. ed. Washington, DC: American Psychiatric As- adults who are seeking Social sociation; 2013. Security disability benefi ts or 5. Centers for Disease Control and Prevention. The author has disclosed no fi nancial relationships Prevalence of autism spectrum disorder among related to this article. employment accommodations children aged 8 years—autism and develop- through the Americans with mental disabilities monitoring network, 11 sites, United States, 2010. MMWR Surveill Summ. Disabilities Act of 1990.21 2014;63(2):1-21. DOI-10.1097/01.NPR.0000544285.02331.2c

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