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