Autism spectrum disorder (ASD) is a developmental disability that can cause social, communication, and behavioral challenges. ASD begins early in childhood and lasts throughout a person’s life. Some adults with undiagnosed ASD are not identified until they seek diagnosis later in life. Going undiagnosed and untreated can make life very difficult for adults with ASD.
What is autism spectrum disorder?
Autism spectrum disorder (ASD) is a complex developmental condition that involves challenges with social skills, speech and nonverbal communication, and restricted/repetitive behaviors. The effects and severity of ASD vary widely across the spectrum. Some people with ASD are able to live independently, while others require life-long care and support.
ASD begins early in childhood, before the age of 3, and lasts throughout a person’s life. It is considered a developmental disability because it affects how a person develops over time. The exact causes of ASD are not fully known, but research shows that genes and environmental factors both play important roles. There is no medical detection or cure for ASD.
Why does autism go undiagnosed in some adults?
There are several reasons why autism can go undiagnosed into adulthood:
– **Lack of awareness:** 20-30 years ago, there was much less awareness about autism spectrum disorder. Doctors were not as trained in recognizing the signs and symptoms. Many adults today remained undiagnosed as children due to lack of awareness.
– **No significant impairment as a child:** Some adults on the higher-functioning end of the spectrum did not have severe early impairment. They may have had social difficulties and sensory issues but managed to get through schooling without supports. The challenges emerge later in navigating adulthood.
– **Better coping mechanisms developed:** Many undiagnosed adults have found ways to cope with or mask their autism challenges over the years. This can lead to going undiagnosed until the coping mechanisms fail or life changes trigger increased difficulties.
– **Gender bias:** Autism has historically been considered a predominantly male diagnosis. Many females on the spectrum go unrecognized due to social biases that autism cannot present differently in males vs. females.
– **Racial/ethnic disparities:** Due to systemic and cultural biases, people of color tend to be both under-identified and over-diagnosed with autism depending on context. This contributes to lack of appropriate diagnosis and support.
– **High intelligence:** People on the spectrum with high intelligence are often diagnosed late because their superior intellectual abilities can mask the social and communication challenges associated with autism.
What are common signs of untreated autism in adults?
Some common signs and symptoms of untreated ASD in undiagnosed adults include:
– Difficulty initiating or holding conversations
– Limited understanding of social cues, norms, and subtleties
– Tendency to take things literally and misunderstand sarcasm
– Avoidance of eye contact or preference for reduced eye contact
– Appearing aloof, detached, or uninterested in others
– Difficulty forming and keeping friendships or relationships
– Rigid thinking patterns or difficulty coping with change
– Narrow, intense interests or hobbies
– Repetitive behaviors or movements (hand flapping, rocking, pacing)
– Unusual sensory sensitivities to light, sound, touch, etc.
– A strong need for structure, order, and rules
– Higher anxiety, depression, or tendency to feel overwhelmed
The exact symptoms and their severity vary quite a bit across individuals. But untreated ASD commonly causes significant challenges with social-communication skills, flexibility, sensory regulation, and maintaining relationships.
What are the effects of leaving autism undiagnosed into adulthood?
When autism goes undiagnosed into adulthood, it can take a major toll across all aspects of life. Adults on the spectrum often have difficulties and confusion due to lacking explanations for their challenges.
Some common effects of undiagnosed autism spectrum disorder in adulthood include:
– **Social isolation:** Without understanding the reasons for social difficulties, many autistic adults feel lonely and isolated. They may be viewed by others as odd or aloof. Maintaining relationships is challenging.
– **Anxiety and depression:** Coping with life without necessary supports often leads to mood disorders like anxiety and depression. Sensory issues, change, and social distress contribute to these co-occurring conditions.
– **Unemployment or under-employment:** Many struggle to obtain or maintain suitable employment. Traditional workplace environments and expectations often do not provide the necessary flexibility.
– **Financial hardship:** Between frequent job losses, under-employment, difficulties qualifying for services, and added healthcare costs, unaddressed autism frequently causes money problems.
– **Housing instability:** Similar to employment, securing and maintaining appropriate housing is challenging. Sensory issues, need for structure, difficulties with landlords or neighbors, and limited finances contribute to housing instability.
– **Substance abuse:** Some resort to alcohol or drugs as an unhealthy coping mechanism. Substance abuse issues are common both due to autism’s associated mental health challenges and efforts at self-medication.
– **Poor physical health:** The added stress, lack of treatment, difficulties managing care, and other factors contribute to poorer physical health in undiagnosed autistic adults.
– **Legal problems:** Misunderstandings due to social and communication challenges can lead to unwarranted legal trouble.
– **Caregiver burnout for partners/families:** Caring for an undiagnosed autistic adult without the right supports leads to burnout. Families often lack understanding of their loved one’s challenges.
How does an adult get diagnosed with autism spectrum disorder?
The diagnostic process for autism spectrum disorder in adults involves:
– **Initial screening:** A doctor or mental health professional will ask about symptoms, early development, family history, and ability to function. Screening tools like the Autism Quotient or Ritvo Autism Asperger Diagnostic Scale are commonly used.
– **Full diagnostic evaluation:** If screening indicates likely ASD, a comprehensive diagnostic evaluation will be completed by a specialist like a psychiatrist, psychologist, or neurologist.
– **Interviews:** The client’s self-reported symptoms and history will be discussed in detail. Additional perspectives will be sought from friends, partners, parents, or other relevant people when available.
– **Assessment for comorbid conditions:** The evaluation will screen for conditions that often co-occur with ASD like anxiety, ADHD, depression, and OCD.
– **Standardized ASD assessments:** Formal diagnostic tools will be administered like the Adult Autism Spectrum Quotient or the Ritvo Autism Asperger Diagnostic Scale-Revised. Neuropsychological testing may also be utilized.
– **Review of records:** Past medical, academic, or therapeutic records will be reviewed when obtainable.
– **Diagnosis discussion:** The clinician will synthesize all available information to determine if criteria are met for a formal ASD diagnosis. This will be reviewed with the client and recommendations for treatment and supports made.
What kinds of treatments help adults with undiagnosed ASD?
There are a variety of supportive treatments and services that can greatly improve quality of life for adults on the spectrum once accurately diagnosed:
– **Psychotherapy:** Talk therapy like cognitive behavioral therapy (CBT) helps manage anxiety and depression, build coping skills, and improve self-esteem. Social skills therapy teaches techniques for better social functioning.
– **Pharmacotherapy:** Medications like SSRIs can treat co-occurring mental health conditions or issues like repetitive behaviors. Medication should always be paired with therapy and other interventions.
– **Psychoeducation:** Learning extensively about ASD helps adults make sense of lifelong challenges and develop self-compassion. It also informs treatment choices.
– **Social skills training:** Direct coaching on skills like conversation, understanding social cues, perspective taking, and building friendships. This may take place individually or in group settings.
– **Cognitive remediation:** Retraining cognitive difficulties related to executive function, emotional regulation, and flexibility/adaptability. This helps overcome rigidity and tendency to feel overwhelmed.
– **Speech therapy:** For those with verbal communication challenges, speech therapy techniques improve conversational abilities. Alternative communication methods may also be explored.
– **Occupational therapy:** Helps build life skills and address sensory integration issues like hyposensitivities or hypersensitivities to environmental stimuli.
– **Case management:** Navigating and coordinating the various services needed may require professional case management support. A case manager assists with paperwork, records, and accessing providers.
– **Supported/sheltered employment:** Working in settings that provide additional autism support and accommodate individual needs better ensures job success and satisfaction.
– **Supported living services:** Assistance securing housing optimized for those on the spectrum and providing support with life skills and advocacy can improve independent living.
There are also therapies and interventions focused more on adapting environments to meet autistic adults’ needs. Examples include sensory accommodations, schedules and timers to provide structure, social narratives, and training staff in supporting those with ASD.
What are possible complications of untreated ASD in adults?
When left unaddressed well into adulthood, autism spectrum disorder can lead to a number of complications, including:
– Chronic depression, anxiety, anger issues, low self-worth
– Development of obsessive-compulsive behaviors and habits
– Severe impairment in ability to maintain employment
– Lack of access to needed accommodations and disability services
– Poverty and homelessness
– Family conflict, divorce, or lack of family support system
– Isolation, victimization, or abuse by others
– Legal problems due to misunderstandings in social situations
– Involvement in the mental health system through instability and crises
– Higher prevalence of conditions like epilepsy, GI disorders, sleep disorders
– Development of substance abuse problems
– Poor self-care and overall physical health
– Suicidality and self-harm behaviors
– Aggression or violent meltdowns in some cases
The complications tend to be most severe when high support needs are present. Those considered “high-functioning” often develop their own coping mechanisms but still face increased struggles in many areas without accurate diagnosis and tailored supports. Obtaining an ASD diagnosis and appropriate treatment as an adult can make an immense difference in quality of life.
What are some statistics on undiagnosed autism in adults?
| Statistic | Data |
|---|---|
| Estimated autism prevalence in adults | 1 in 100 |
| Estimated portion unrecognized and undiagnosed | 50% |
| Average age of diagnosis for adults | 36 years old |
| Rate of co-occurring mental health conditions | 70% |
| Unemployment rate | Over 50% remain unemployed |
| Poverty rate | 25% live below federal poverty line |
These statistics indicate that a very large number of autistic adults remain undiagnosed. This leads to concerning outcomes like high unemployment, financial instability, and co-occurring mental illness. Much work remains at improving identification and support for autistic adults.
What steps can adults take if they think they may have undiagnosed ASD?
Adults who recognize signs and symptoms of ASD in themselves can take the following steps:
– Research the symptoms, criteria, and characteristics of autism in adults and those diagnosed later in life. Autistic adults’ blogs, videos, and perspectives provide insights.
– Make notes about any early developmental delays or differences. Also note current challenges with social skills, communication, sensory issues, routines, and special interests.
– Speak with someone who knows you well to get an outside perspective. Ask if they’ve noticed possible signs of ASD.
– Complete online self-assessments created for adults like the AQ-10 or RAADS-14 screening tools. Print out your scores.
– Find a trained clinician experienced in evaluating and diagnosing adults on the spectrum. Ask around for recommendations. Psychologists, psychiatrists, and neuropsychologists are possible options.
– Book a first appointment focused on your concerns, history, and self-assessment results. Come prepared with notes and records.
– If the clinician confirms likelihood of ASD, request a full diagnostic evaluation. If not, seek a second professional opinion.
– Throughout the process, be your own advocate! Express all relevant information to get the supports needed. An accurate diagnosis is the critical starting point.
What are some final key points on undiagnosed ASD in adults?
In summary, key points to understand about undiagnosed autism in adulthood include:
– Many adults remain undiagnosed due to historical biases and lack of awareness. High intelligence and coping mechanisms also mask symptoms.
– Unaddressed autism frequently leads to poor mental health, social isolation, unemployment, legal issues, and other complications.
– Accurate diagnosis leads to psychoeducation, services, skills training, and environmental adaptations that greatly improve quality of life.
– Autistic adults have a right to assessment and diagnosis at any age. It is never too late to gain benefits from appropriate support.
– Public awareness, professional training, accessible diagnostic services, and autism acceptance will help close this gap.
– Adults noticing possible signs of ASD should self-educate, complete screenings, record observations, and seek a comprehensive evaluation.
– With the appropriate supports, autistic adults can live fulfilling, self-determined lives and make valuable contributions to society.