Although most autism literature focuses on children, autism is a lifelong spectrum condition that affects about 1% of adults. People who are diagnosed with autism in adulthood may have a range of reactions. Some may feel confused about their identity, while others might feel peace of mind now that they have an explanation for their unique cognition. No single reaction is “right,” and many people bounce from one emotion to another following a diagnosis.

Autistic adults who did not receive supportive services in childhood may have struggled in school or with relationships. While finding support can be difficult, a wide range of organizations offer help to autistic adults. Many organizations focus on helping autistic adults see their diagnosis as a unique way of thinking—not a disease or syndrome.

Barriers to Official Diagnosis

A generation or two ago, many people had their autism go unnoticed, especially if their symptoms were relatively mild. Even as recently as 2000, just 1 in 150 children were diagnosed with autism, compared to 1 in 59 in 2014. This apparent increase in the autism rate is likely due to better early diagnosis and detection. The shift toward greater awareness of autism means that people who did not get diagnosed in childhood may pursue diagnosis as adults.

Even as early diagnosis becomes more prevalent, some groups are less likely to be diagnosed as children:

• Adults may miss autism symptoms in girls, particularly since most media coverage of autism focuses on boys. A 2017 study found that autistic girls may have better social skills than their male peers, masking symptoms of the condition. This can delay diagnosis, sometimes into adulthood.
• Racism may lead to underdiagnosis of autism in children of color, especially black children. Children of color are diagnosed later than their white peers, and black children are more likely to be misdiagnosed, leading to inadequate or inappropriate treatment regimens.
• Poverty and classism can reduce access to appropriate health care. Children who attend underserved public schools may not have the resources that wealthier children possess. Additionally, without quality doctors or adequate insurance coverage, parents may delay seeking treatment for unusual symptoms in their children. Even in adulthood, financial woes may deter a person from seeking mental health care or make it difficult to find a competent clinician.

Self-Diagnosis

As autism awareness spreads, some people self-diagnose with autism spectrum conditions. This practice is controversial. Supporters of self-diagnosis point to the many barriers to official diagnosis, emphasizing that even when a person can afford treatment, they may not receive an accurate or timely diagnosis. Some other arguments in favor of self-diagnosis include:

• Neurodivergence as identity. Many adult autistics view autism as a type of neurodivergence, not a disease. They see autism as something that brings both benefits and challenges, and they embrace autism as an identity. Many disability activists herald the right of a neurodivergent person to self-identify as such.
• Potential for improved accuracy. An autistic person knows their own symptoms better than anyone else. Armed with sufficient research and a sound understanding of autism, a person may be able to accurately diagnose themselves. In fact, they may do so faster than a professional.
• Stress of diagnosis. Getting a diagnosis often requires many long and involved tests. It also requires numerous interactions with medical professionals, receptionists, insurance representatives, and other people involved in managed care. These interactions can be highly stressful, especially to some people with autism.

Conversely, the arguments against self-diagnosis include:

• Potential reliance on autism stereotypes. Stereotypes about people with autism are pervasive and often paint an inaccurate portrait of the diagnosis. While some autistic people struggle with social interactions and cues, others do not. Autism is a continuum of symptoms, and people who rely on media portrayals or popular articles as their primary source of information may get the diagnosis wrong.
• Fear of appropriation. Some autistic self-advocates feel that people who self-diagnose are co-opting another person’s identity and lived experiences. There is a concern that some self-diagnosed individuals might present themselves as representatives of the autistic community without understanding its history.
• Lack of access to support. Some forms of support may require an official diagnosis. A person seeking accommodations at work, for example, may need a letter from a doctor.

Members of the same community who share similar values often have significant disagreements about the value of self-diagnosis.

Reacting to the Diagnosis

People diagnosed with autism should know that the diagnosis does not change anything about who they are. It merely gives them a label to apply to their symptoms and experiences.

There is no “normal” or “right” reaction to an autism diagnosis. Indeed, many people cycle through a wide range of reactions. Some quickly join self-advocacy communities and become disability rights activists. Others feel embarrassed or ashamed. Some are angry that they did not get a diagnosis earlier. Still others feel comforted because they finally have a label that describes the challenges they have experienced.

Newly diagnosed autistics may find that processing the diagnosis with friends, family, or a therapist helps them manage their emotions.

Finding Autism Services for Adults

Autistic adults often struggle to find services, since many advocacy organizations and public health agencies focus on children. The right doctor or therapist may be able to offer a referral to local organizations. The Autistic Self Advocacy Network offers a rich variety of resources, including tips on advocating for oneself and talking about autism with others. The Asperger/Autism Network has compiled a list of resources specifically for adults.

Autistic adults should know that discrimination against people with autism is a form of disability discrimination. The Americans With Disabilities Act prohibits employers from making hiring or firing decisions based on disability status. It also requires that, in most cases, employers offer “reasonable” accommodations to people with disabilities, including those with autism. In some cases, a lawyer may be a valuable resource who can help with identifying specific rights and accommodations to which a person may be entitled.

Therapy can help autistic adults in many ways. Therapists who specialize in autism can connect autistic people to additional services, offer coping strategies, and educate adults about life on the spectrum. A therapist can also help autistic adults talk to others about their diagnosis and manage relationship challenges. In addition, therapy can help a person cope with the social or economic barriers that may have delayed their diagnosis.

You can find a compassionate autism therapist here.

References:

1. Dababnah, S., Shaia, W., Campion, K., & Nichols, H. (2018). “We had to keep pushing”: caregivers’ perspectives on autism screening and referral practices of black children in primary care. Intellectual and Developmental Disabilities, 56(5), 321-336. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/30273522
2. Data and statistics on autism spectrum disorder. (2019). Retrieved from https://www.cdc.gov/ncbddd/autism/data.html
3. Murphy, C., Wilson, C., Robertson, D., Ecker, C., Daly, E., & Hammond, N. et al. (2016). Autism spectrum disorder in adults: diagnosis, management, and health services development. Neuropsychiatric Disease and Treatment, Volume 12, 1669-1686. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4940003/
4. Sarrett, J. (2016). Biocertification and neurodiversity: The role and implications of self-diagnosis in autistic communities. Neuroethics, 9(1), 23-36. Retrieved from https://link.springer.com/article/10.1007/s12152-016-9247-x
5. The Americans with Disabilities Act of 1990 (ADA). Retrieved 8 January 2020, from https://www.carautismroadmap.org/the-americans-with-disabilities-act-of-1990-ada/

Mental health tests that offer online diagnoses are increasingly popular. These tests promise to help people understand their psychological needs and may serve as a springboard for discussion with a mental health provider. But do these online mental health assessments offer an accurate diagnosis? That depends on several factors.

Mental Health Diagnosis or Fun Quiz? Knowing the Difference

Spend a few moments on Facebook and you’ll quickly find dozens of quizzes. Answer a few questions and find out which dictator you most relate to, what color your soul is, or how many pets you should have. You may also find quizzes that promise to diagnose health issues sprinkled among the cornucopia of strange quizlets. These quizzes promise to measure what personality disorder you have, how “OCD” you are, or what your fundamental mental health problem is.

These quizzes often conflate clinically validated mental health diagnoses with personality traits or quirks. A person who prefers the company of others or who doesn’t like abandonment is slapped with a borderline label, while a person who loves paper planners or who maintains an orderly home is labeled obsessive-compulsive.

Quizzes that turn mental health diagnoses into labels or personality traits are not reliable. In addition, they often stigmatize the very conditions they claim to diagnose. Some signs you’re taking one of these mental health quizzes include:

• Everyone who takes the test gets a diagnosis.
• The test does not disclose how it arrives at its diagnosis.
• The test is short.
• The test features a lot of jokes.

How Online Self-Assessments Work

The process of diagnosing someone with a mental health condition is exhaustive. Even experts continue to debate which criteria warrant which diagnosis. The right diagnostic criteria are so important that the American Psychiatric Association (APA) routinely updates the Diagnostic and Statistical Manual of Mental Disorders (DSM), its diagnostic guide.

It’s impossible for a quiz that asks a handful of questions to offer a clear diagnosis. Researchers have, however, developed a number of clinically validated assessment tools. These tools are fairly adept at detecting signs of various mental health conditions. They work by gathering symptoms of mental health conditions, such as depression and anxiety, and constructing questions based on those symptoms. The highest quality tools ask the same question in several different ways to ensure an accurate outcome.

Some online mental health assessments are based on clinically validated diagnostic tools that clinicians use. For example, some assessments present questions drawn from the Patient Health Questionnaire (PHQ-9), which doctors often use to diagnose depression. Some clinically validated diagnostic tools are as reliable as medical tests such as imaging scans or blood work.

Quizzes that turn mental health diagnoses into labels or personality traits are not reliable. In addition, they often stigmatize the very conditions they claim to diagnose.

Can You Get a Mental Health Diagnosis from an Online Assessment?

Only a mental health provider can offer an accurate mental health diagnosis. It’s important to view online assessments as tools for self-help, not as a way to get a diagnosis. These quizzes may encourage people to seek counseling or serve as a starting point for a discussion with a mental health provider.

Online self-assessments often suffer from two key shortcomings:

• Test reliability: This is a measure of how well these tools detect mental health issues and how frequently they diagnose a mental health issue in someone who does not actually have a diagnosis. Tests that have been clinically validated in peer-reviewed studies are more reliable. The more studied a test is, the more reliable it is likely to be. Even the best tests, however, cannot substitute for the professional judgment of an expert.
• Self-report reliability: Online diagnostic tools rely on self-reports. It can be hard to assess oneself honestly. For instance, a person might not want to admit they have trouble making friends, that they spend too much money, or that they struggle with communication skills. So some tests may end up being a measure of how a person wants to appear—or what they think of themselves—rather than how well they are actually functioning. Higher quality tests attempt to address this issue with well-worded questions.

For most people, there’s no harm in trying online self-assessments for mental health. They can draw attention to common mental health issues and may even reduce stigma. But when these tests turn mental health into something amusing or funny, they can actually increase stigma, making people less likely to seek treatment.

People must also be cautious about privacy issues. Some apparently fun tests are actually clever ruses designed to gain personal information. This information can then be sold to marketers or even used to guess a person’s password. Look to see where the test came from and carefully review any disclosure statements before proceeding with any online test.

What to Do With an Online Diagnosis

If you receive a “diagnosis” from an online test, this doesn’t necessarily mean you have a diagnosis or that the one you’ve received is correct. Try taking the test again on a different day. Sometimes tests capture how a person is feeling in the moment rather than their overall level of wellness.

People who are concerned about their mental health should talk to a mental health expert like a therapist or psychiatrist. Talking about the results of an online test can even be a helpful way to get the conversation started. Try mentioning what the test said or sharing your answers to some of the test’s questions. It’s also important to focus not only on what the test says, but on what currently troubles you. Do you feel anxious? Angry? Sad? Alone? This can help your provider narrow down the diagnosis and decide what, if any, treatment might be most helpful.

Signs of Mental Health Issues

Everyone struggles with stress, anxiety, and sadness from time to time. Difficult emotions don’t necessarily mean a person has a mental health diagnosis. Because there are dozens of common mental health issues, it’s impossible to determine whether a person has a diagnosis based on a single list.

Instead, it’s helpful to assess how well you’re functioning. Do issues such as anxiety or depression cause relationship problems or interfere with daily functioning? Do you feel like you’re getting worse or that you can’t change or control your thoughts? If so, therapy may help. Even when a person does not have a diagnosable issue, therapy can support people through the processes of exploring painful emotions, fixing broken relationships, and setting achievable goals.

References:

1. Beidas, R. S., Stewart, R. E., Walsh, L., Lucas, S., Downey, M. M., Jackson, K., . . . Mandell, D. S. (2015). Free, brief, and validated: Standardized instruments for low-resource mental health settings. Cognitive and Behavioral Practice, 1(22), 5-19. doi: 10.1016/j.cbpra.2014.02.002
2. Daw, J. (2001). Psychological assessments shown to be as valid as medical tests. Monitor on Psychology, 7(32), 46. Retrieved from http://www.apa.org/monitor/julaug01/psychassess.aspx
3. Rothke, B. (2017, August 7). Just say no to Facebook quizzes. Retrieved from https://www.csoonline.com/article/3214264/fraud/just-say-no-to-facebook-quizzes.html
4. Screening tools. (n.d.). Retrieved from https://www.integration.samhsa.gov/clinical-practice/screening-tools
5. Wilkie, D. (2013, September 11). How reliable are personality tests? Retrieved from https://www.shrm.org/resourcesandtools/hr-topics/employee-relations/pages/how-reliable-are-personality-tests.aspx

It is often assumed by the general public that psychological diagnosis is a normal part of therapy that always occurs. Some people who have been in therapy may be unaware they have received a diagnosis. For their part, therapists have a wide range of views and practices pertaining to diagnosis, ranging from seeing it as essential to seeing it as unnecessary. Consumers have a right to know the advantages and risks of diagnosis.

Advantages of Diagnosis

Some people find relief and validation in receiving a diagnosis, as it symbolizes they are not alone. This can decrease the guilt, shame, and feelings of isolation that often are experienced. Diagnosis can also open up resources. This may be true, in particular, for children who are struggling with challenges in their social, emotional, and behavioral functioning.

For professionals, diagnosis can be a good way to quickly and easily communicate information, helping them to be more informed when working with a person in treatment. Also, diagnosis is often required for insurance to pay for therapy, which is a significant financial benefit.

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Risks of Diagnosis

The risks of diagnosis are less frequently acknowledged. Most people I work with in therapy are surprised when I discuss the advantages and disadvantages of diagnosis with them; almost all who previously have been in therapy note that no therapist has done this with them before. But there are indeed risks, and consumers have a right to be aware of them.

Diagnoses often stick with people. I have had people who came to me for therapy with a previous diagnosis that followed them from childhood well into adulthood. In some cases, it was quite clear they were misdiagnosed early on, yet the label stuck with them. Diagnoses can also change over time and may no longer be accurate.

Further, diagnoses can be misunderstood by those outside the mental health profession. I have spoken with many previously diagnosed people who, upon sharing this with people they trusted, found it changed their relationship and, in some cases, ended it.

What Is Diagnosis?

What constitutes a diagnosis is debated by therapists (Kinderman, 2017). In essence, a psychological diagnosis is a label placed on a group of behaviors or experiences that are often called symptoms. The determination of what amounts to a diagnosis is determined largely by what is considered “normal” or average. There are some who maintain that diagnosis almost always has a biological origin, while others believe it tends to emerge largely from personal or social experience. Many believe it may be a combination of these two.

At times, a diagnosis can lead to focusing solely on the symptoms of that diagnosis, without considering the challenges or thought processes that may be contributing factors. This can limit the understanding of you, your concerns, and what you want from therapy.

A cluster of symptoms that fit a diagnosis may emerge from different causes. For example, depression may result from having endured difficult experiences in life or may, at times, have a biological cause. Yet, some assume that, regardless of whether there is a social/personal cause or a biological cause, the treatment of a condition should be through medication. This is a concern of many therapists who have witnessed therapy, without medications, successfully treat many conditions.

At times, a diagnosis can lead to focusing solely on the symptoms of that diagnosis, without considering the challenges or thought processes that may be contributing factors. This can limit the understanding of you, your concerns, and what you want from therapy.

After the release of the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013, many therapists were upset with the changes (Kinderman, 2017; Robins, Kamens, & Elkins, 2017). These changes included a general lowering of the threshold of the criteria to give people certain diagnoses. Some therapists voiced concern that this could lead to medicating people who do not need medication.

In the end, psychological diagnosis is based in part on science, in part on theory, and in part on the politics of the field of psychology. There is much that remains unknown and much that is hotly debated. I generally urge caution when any mental health professional is married to any one perspective on diagnosis and does not acknowledge other views.

Consumer Rights with Diagnosis

I believe that, in most instances, consumers should be part of the decision about whether to be given a diagnosis. It is not something that should be imposed upon the consumer without their input or perspective. Here are my recommendations for consumers regarding diagnosis:

• If your therapist does not bring up diagnosis in the first session, ask if they are going to give you a diagnosis and what the diagnosis is.
• Ask what the diagnosis means and your therapist’s reason for giving you the diagnosis.
• If you do not want to be diagnosed, tell the therapist. They may be required to give a diagnosis if you are using insurance; however, you have a right to be a part of that discussion.
• You have a right to ask how the therapist will use the diagnosis.
• If you believe your therapist is treating you like a diagnosis and not like a person, discuss this with them.
• Ask your therapist how your diagnosis may impact you.
• If you are not comfortable with your therapist’s approach to diagnosis or the diagnosis they give, get a second opinion or consider finding a different therapist who may be a better fit for you.

Diagnosis can be a difficult issue for therapists and consumers alike. It is best approached as a collaborative process within the therapeutic relationship. Regardless, you have a right to know what is going on with your diagnosis.

References:

1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5^th). Washington, DC: Author.
2. Kinderman, P., Allsopp, K., & Cooke, A. (2017). Responses to the publication of the American Psychiatric Association’s DSM-5. Journal of Humanistic Psychology, 57, 625-649.
3. Robbins, B. D., Kamens, S. R., & Elkins, D. N. (2017). DSM-5 reform efforts by the Society for Humanistic Psychology. Journal of Humanistic Psychology, 57, 602-624.