Detecting Autism in Adults


Although most autism literature focuses on children, autism is a lifelong spectrum condition that affects about 1% of adults. People who believe to be autistic or 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 formal diagnosis.

'Autism' is a very broad term. It describes a whole spectrum of conditions, all characterised by a few common traits, and just to name a few like repetitive behaviors and challenges with communication and social skills. For instance, you may have heard of or know of a person diagnosed with Asperger's syndrome, which is also considered a spectrum disorder.

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 organisations offer help to autistic adults. Many organisations focus on helping autistic adults see their diagnosis as a unique way of thinking—not a disease or syndrome.

The single diagnosis of autism can represent a diverse set of symptoms from many different causes

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.

Self-Diagnosis

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.

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, emphasising 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 in the UK

Autistic adults often struggle to find services, since many advocacy organisations and public health agencies focus on children. The right doctor or therapist may be able to offer a referral to local organisations. The National Autistic Society (https://www.autism.org.uk/) offers a rich variety of resources, including tips on advocating for oneself and talking about autism with others. The NHS 'support page' (https://www.nhs.uk/conditions/autism/support/) presents a short compiled a list of resources available in the UK.

Autistic adults should know that discrimination against people with autism is a form of disability discrimination. The Equality Act 2010 and the United Nations (UN) Convention on disability rights help to enforce, protect and promote your rights, 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. For further readings/articles regarding the Convention on the Rights of Persons with Disabilities, please visit the link: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html

Often, individuals with autism are at high risk for one or more comorbid mental health conditions, most commonly anxiety and depression, which exceed prevalence rates reported in non-autistic individuals. Therapy can help autistic adults in many ways. Therapists who specialise 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.

Autism can sometimes leave people feeling isolated. 'I do not fit in with the social life in my town or university. … Most of my Friday and Saturday nights are spent writing papers and drawing;' 'My life would be horrible if I did not have my challenging career;' etc. Broadly, one could say that a person with autism is wired differently. Their brain's nerve cells and synapses are organised in a different way, and, as a result, process information uniquely.

Common symptoms of autism in adults include (symptoms vary and would be present in spectra, ranging from low medium to high scales):

  • Difficulty interpreting what others are thinking or feeling

  • Trouble interpreting facial expressions, body language, or social cues

  • Difficulty regulating emotion

  • Trouble keeping up a conversation

  • Inflection that does not reflect feelings

  • Difficulty maintaining the natural give-and-take of a conversation; prone to monologues on a favorite subject

  • Tendency to engage in repetitive or routine behaviors

  • Only participates in a restricted range of activities

  • Strict consistency to daily routines; outbursts when changes occur

  • Deep knowledge of one particular topic, such as a certain branch of science or industry

Autism Symptoms in Adults at Work

Symptoms of ASD vary greatly from person to person based on the severity of the condition.

  • When you’re having a conversation with your boss, you prefer to look at the wall, her shoes, or anywhere but directly into her eyes.

  • Your co-workers say that you speak like a robot.

  • Each item on your desk has a special place, and you don’t like when the cleaning company rearranges it to dust.

  • You are really good at math, or software coding, but struggle to succeed in other areas.

  • You talk to your co-workers the same way you talk with your family and friends.

  • During meetings, you find yourself making involuntary noises, like clearing your throat over and over.

  • When talking with your boss, you have difficulty telling if he is happy with your performance or mad at you.

In addition, individuals with ASD may exhibit extraordinary talents in visual skills, music, math, and art. And roughly 40 percent of individuals with ASD have average or above-average intelligence. Adults with autism spectrum disorder — particularly those with high functioning autism or Asperger syndrome — can live healthy productive lives with the proper structure and guidance. While social difficulties make communication with others challenging, people with autism can achieve a life of independence.

Londoner 'Memory artist' Stephen Wiltshire unveils sprawling Mexico City artwork

Autism isn’t without its gifts. The unique wiring of the brain often gives people with autism a whole different outlook on the world, letting them see it in ways other people wouldn’t even consider. And with that unique perspective can there also be an incredible memory or an unrelenting focus on one's passions.Though autism did not become the mainstream diagnosis it is today until well into the 20th century, it is certainly not anything new. Perhaps that’s how these famous people with autism were able to become successful. Experts have also posited that many of these famous people with autism throughout history may well have gone through most of if not all of their lives unaware that they even had the condition.

Indeed, history is full of people who many consider to be or have been somewhere on the autism spectrum. Like the people on this list below:

(Please note that these individuals' circumstances and opportunities might have aided their successes. Therefore, it is important to avoid comparisons with the self or loved ones who might be in the autistic spectrum. The intention in sharing the list below is mainly to support a general notion that autistic people can achieve many levels of competency, depending on where one is located in the spectrum. Many things can be achieved in the lives of autistic people when the focus is based on personal skills and gifts rather then their limitations. Success is an intimate actualisation, which usually is not publicly known , such as in the case of famous historic figures or celebrities.)

  • Charles Darwin – Naturalist, Geologist, and Biologist

  • Dan Aykroyd – Comedic Actor

  • Steve Jobs – Former CEO of Apple

  • Sir Anthony Hopkins – Actor, director and film producer

  • Hans Christian Andersen – Children’s Author

  • Benjamin Banneker – African American almanac author, surveyor, naturalist, and farmer

  • Susan Boyle – Singer

  • Tim Burton – Movie Director

  • Lewis Carroll – Author of “Alice in Wonderland”

  • Henry Cavendish – Scientist

  • Emily Dickinson – Poet

  • Paul Dirac – Physicist

  • Albert Einstein – Scientist & Mathematician

  • Bobby Fischer – Chess Grandmaster

  • Bill Gates – Co-founder of the Microsoft Corporation

  • Andy Warhol – Artist, film director, and producer

  • Temple Grandin – Animal Scientist

  • Daryl Hannah – Actress & Environmental Activist

  • Thomas Jefferson – Early American Politician

  • James Joyce – Author of “Ulysses”

  • Alfred Kinsey – Sexologist & Biologist

  • Stanley Kubrick – Film Director

  • Barbara McClintock – Scientist and Cytogeneticist

  • Michelangelo – Sculptor, Painter, Architect, Poet

  • Wolfgang Amadeus Mozart – Classical Composer

  • Sir Isaac Newton – Mathematician, Astronomer, & Physicist

  • Jerry Seinfeld – Comedian

  • Satoshi Tajiri – Creator of Nintendo’s Pokémon

  • Nikola Tesla – Inventor

  • Andy Warhol – Artist

  • Ludwig Wittgenstein – Philosopher

  • William Butler Yeats – Poet


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© 2020 by Rozie Pilkington

London Borough of Bromley