I've been diagnosed with autism spectrum disorder in adulthood… Now what?

It can be disconcerting for an adult to receive an autism spectrum disorder (ASD) diagnosis, as it implies having a different neurodevelopmental process and a distinct way of understanding and perceiving the world. However, in many cases, the diagnosis proves liberating, because the individual may have been very aware of this feeling of being "different" from others. Often, we see how the diagnosis helps the person understand many things about themselves, and it can also be helpful for their family and friends.

There is confusion surrounding the word "spectrum." It's often understood that autism spectrum disorder manifests in a linear fashion, where one person at one end is "very autistic" and another at the opposite end is "not autistic at all." Nothing could be further from the truth.

In autism spectrum disorder, difficulties can arise in various areas, and the degree of impairment varies from person to person. One such area is communication and social interaction . For example, within this spectrum, we might find someone who only communicates through images (which doesn't mean they don't understand), while another might communicate verbally—which may even be a strength for them—but struggle to understand nonverbal language (facial expressions, tone of voice, etc.) and, therefore, doesn't grasp certain aspects of indirect communication such as jokes, sarcasm, or double meanings. Sensory processing can also vary; some senses may be highly heightened, while others may be less reactive. Thus, we might find individuals on the spectrum who are very sensitive to noise or who have a high pain threshold. Other aspects that may be affected to varying degrees include the ability to plan and tolerance for change.

Diagnosing ASD in adults

Autism presents diagnostic challenges and has been underdiagnosed. The reasons for these diagnostic difficulties have been extensively studied and are a phenomenon occurring in many countries. Historically, it was relatively "easy" to diagnose ASD in individuals with very evident symptoms or when there was comorbidity with intellectual disability. However, in the group of individuals with more subtle symptoms, it has been clearly underdiagnosed, with the implications that this entails. These range from misdiagnoses to situations involving the prescription of unnecessary medications or a lack of access to adaptations or support, among others.

In the case of women with ASD, this situation of underdiagnosis has been even more pronounced, given that neither the criteria nor the assessment tools considered a gender perspective.

For further information on this topic, the Guide to good practices in girls, adolescents and women with autism spectrum disorder, prepared by AETAPI, may be useful.

A diagnosis in adulthood can sometimes come about because someone in the person's close circle has recently been diagnosed. We see many situations where a son or daughter is diagnosed, and the person recognizes these same symptoms in themselves.

Sometimes we find that it is the individual who becomes aware of certain situations and seeks healthcare services practically "self-diagnosed," through materials or groups of people who share information on the subject. At other times, it is the healthcare professional, usually a psychiatrist or psychologist, who suggests a diagnostic evaluation for the patient, given that they observe symptoms that don't quite fit with the person's existing diagnosis, or they notice that the medication is not working as expected.

Diagnoses of anxiety disorder, depressive disorders, personality disorders, or a combination of all of them, are frequently misdiagnosed or partial in individuals with autism spectrum disorder.

To diagnose autism spectrum disorder, it's important to know about the person's neurodevelopment. In many cases, interviewing the family is essential, but in adulthood, access to the family isn't always possible. In parallel, an in-depth interview and observation of the individual are important, and administering psychometric tests that provide information about their cognitive profile and other areas can be very helpful. Currently, genetic testing is not routinely performed and is quite limited to certain situations, but this can vary by region or country.

Needs of the adult diagnosed with ASD

Once an adult receives a diagnosis, it's important to explore their needs, as each person is different. The most frequently studied needs relate to:

• Psychoeducation.
  The person may need to understand everything the diagnosis entails. Since we're talking about a spectrum with varying levels of functioning, where the impact on different areas differs for each individual, understanding how their ASD condition affects them can help them focus on building strengths and finding more effective support strategies for their challenges. This self-awareness can also help them communicate their needs and experiences more effectively to those outside the spectrum.
• Anxiety management or emotional regulation.
  Due to a different sensory system, whether due to hypersensitivity or hyposensitivity, individuals with autism may experience extreme anxiety in seemingly minor situations. Difficulties understanding their own or others' emotions, as well as the social world, can also be significant sources of stress. Learning to manage these situations is a very common need for people with autism spectrum disorder (ASD) in order to improve their mood, self-confidence, and self-efficacy. For more information on this topic, the book "Anxiety in Autism" by Isabel de Paula is highly recommended.
• Social skills.
  Many people with autism spectrum disorder are very interested in learning the necessary social skills, both for general social and leisure activities, as well as for work, family, and romantic relationships. There are social skills training programs with proven effectiveness, such as the Relational Skills Education and Enrichment Program (PEERS).
• Health needs: Individuals with ASD are more likely to have other psychiatric conditions, such as depression or anxiety, or neurological conditions, such as epilepsy. However, the communication difficulties, intolerance to change, and hypersensitivity inherent in autism spectrum disorder can exacerbate these symptoms. High sensitivity can lead to poor sleep or a very restricted diet limited to just a few foods. This, combined with communication difficulties and low tolerance for change, can make it challenging to consult a doctor or dentist, or to undergo necessary urological and gynecological examinations. Desensitization therapy, social skills training, and a plan for maintaining proper self-care will be essential.
• Support and psychoeducation for the family.
  Whenever the adult wishes, it can be very helpful to involve family and/or partners in the entire treatment process. They can provide the necessary support and understanding, and will also understand that it may be necessary to adjust schedules, plan routines, or adapt the environment. This can also be important for the family, as situations can sometimes be misinterpreted, leading them to believe that the person isn't trying hard enough or is insensitive to certain situations, causing distress within the family.
• Adaptations in the academic and work environment.
  In both environments, difficulties related to sensory overload or social interaction can arise, significantly impacting individuals with autism spectrum disorder (ASD). Often, people with ASD can learn and even excel in certain areas, but when they need to work in teams, give public presentations, or distinguish relevant from irrelevant information, numerous challenges can emerge. Providing these adaptations is crucial for them to develop their full potential and address the issue of low employability. Although they possess a wide range of abilities , it is documented that they are among the groups with the highest rates of job failure, either because they are unable to maintain employment or because they are hired for tasks far below their capabilities. This negatively impacts their self-esteem and contributes to a loss of talent for society. Increasingly, initiatives and studies are emerging that support the effectiveness of these adaptations and explain how to implement them.
• Need for a support group or peers.
  It can be very helpful, especially at the beginning of a diagnosis, to have a group of peers to share with. Often, there may be a prior personal history of suffering or loneliness, and sharing this with others with the same disorder, with whom there may be common interests, can be fundamental for the individual. This doesn't mean that a person with autism spectrum disorder will only want to associate with other people with autism spectrum disorder, because ultimately, like everyone else, they will have their own personal affinities.

Being able to offer these treatments or support to people with autism spectrum disorder is key to their emotional well-being and daily functioning, and helps society to be more inclusive and able to understand the value of neurodiversity.