Autism Spectrum Disorder (ASD) is a neurological and developmental condition that affects social interaction, communication, and behavior. The abilities of people with ASD vary significantly with some individuals needing a high level of support in their daily lives, and others who can live and work independently or with very little help.
According to the World Health Organization, approximately 1 in 100 children are diagnosed with ASD worldwide. In the United States, 1 in 36 children are diagnosed with Autism. Parents of a newly diagnosed child typically have many questions, such as “How can I help my child?” or “How will my child’s future look?”.
” Sadly, parents must also ask if Autism will affect their child’s life expectancy. This article will provide information to help parents understand when and how Autism can impact life expectancy.
- Average Life Expectancy of People with Autism
- Research on Autism & Life Expectancy
- Factors Influencing Life Expectancy in People with Autism
- Addressing Health Disparities
- Quality of Life Considerations
- Strategies for Improving Life Expectancy
Average Life Expectancy of People with Autism
Autism can be a risk factor that reduces the average life expectancy of individuals, but Autism in and of itself does not cause a shortened lifespan. Rather, conditions related to Autism can affect the length of mortality. A 2008 study conducted in Denmark found that the mortality risk of those with Autism was nearly twice that of the general population. Furthermore, individuals with Autism generally succumb to health complications approximately 15 to 20 years earlier than the general population.
Longitudinal studies that followed people with Autism for over 20 years found that the average life expectancy ranges between 39 years and 58 years. Individuals who are more severely affected by Autism have a shorter life expectancy than those less affected by the disorder. According to the DSM-5, there are three levels of Autism, each requiring varying degrees of support.
Individuals that fall within level 1 are considered to have a mild form of Autism requiring minimal support typically within the areas of socialization and understanding nonverbal communication. The life expectancy for people with Level 1 Autism is the highest of the three levels and falls slightly below the average life expectancy of the general population.
In level 2 Autism, individuals are moderately affected and can require substantial support due to challenges with socializing, verbal communication, and nonverbal communication. The life expectance for level 2 Autism ranges from 50 to 60 years which is slightly lower than level 1.
Level 3 Autism requires substantial support for a prolonged period. People in this category are typically nonverbal and have difficulty understanding verbal and nonverbal communication and socializing and have numerous repetitive behavior patterns. In some estimates, life expectancy for level 3 Autism is as low as 35 to 40 years old.
However, a recent study conducted by O’Nions, et al. (2023) used anonymized data between 1989 and 2019 from general practitioners in the United Kingdom to compare persons who received an Autism diagnosis with people of the same age and sex who did not receive a diagnosis of Autism. The researchers found that men with Autism had an estimated life expectancy of 72 to 75 years and women with Autism had an estimated life expectancy of 70 to 77 years.
These findings suggest that many individuals with Autism were dying prematurely, which impacted the overall life expectancy. However, they also suggest that with the right support, many individuals with Autism can lead healthy, happy, and fulfilling lives.
Research on Autism & Life Expectancy
As noted above, different research studies have produced different life expectancies for people with Autism. Several studies (Woolfenden et al, 2012; Mouridesen et al., 2008; Fortuna et al, 2015; Croen et al, 2015; Smith et al, 2018; Builder et al, 2013) have shown that the life expectancy for individuals with Autism is 16 to 20 years lower than the general population. However, the study by O’Nions et al (2023) showed a much different estimate, suggesting the life expectancy difference is less than 10 years. Why is there such a marked difference?
Current State of Research
It has been suggested that the current research that examines life expectancy and Autism has overestimated the reduction in life expectancy for the population. This is attributed to undiagnosed adults across the period studied. O’Nions et al (2023), previously published a study that showed the number of people with Autism is more than double the number cited in national health documents. Therefore, the results cannot be generalized to all people with Autism.
According to Professor Stott (2023), very few adults with Autism have been diagnosed and those that have been diagnosed are more likely to need greater support and have more co-occurring health conditions than on average in the Autism population. In addition, there is the undeniable fact that the landscape of services offered has grown and improved significantly between 1989 and the present. This makes it difficult to apply the same life expectancy to today’s Autism population.
Further skewing the data and limiting generalizability, is an inherent problem in the sample population of longitudinal studies. Many of the researchers required individuals to have survived to age 10 to be eligible for the study and approximately 75% of individuals who participated in longitudinal studies are still alive today.
Variability in Life Expectancy
One consistency across all research conducted on life expectancy and Autism is the variability across genders and the impact of intellectual and developmental abilities. Both Smith et al. (2019) and O’Nions et al. (2023) showed a lower life expectancy for women versus men with Autism. In addition, O’Nions et al. (2023) found that the shortest lifespan in the Autism community is for women with Autism who also had impaired intellectual abilities.
Hirvokoski (2016) reported that individuals with Autism who have limited intellectual and developmental abilities were 40 times more likely to have a shorter lifespan due to a neurological condition than the general population. This is a significant number.
Most studies reflect an average of 10 years difference in the life expectancy of Autistic individuals with and without intellectual challenges.
Further research needs to be conducted to discover the cause of this disparity and measures that can be taken to prevent reduced mortality.
Factors Influencing Life Expectancy in People with Autism
Having Autism does not directly impact a person’s physical health or lower life expectancy. However, individuals with Autism are more susceptible to a range of factors that affect life expectancy. For example, neurological disorders, genetic disorders, accidents, or mental health challenges can all contribute to a reduced lifespan.
Co-occurring medical conditions
A major contributor to life expectancy differences for those with and without Autism is comorbid genetic and medical conditions.
- Genetic conditions: Compared to the general population, individuals with Autism are at a higher risk for several genetic disorders that have been linked to shorter life expectancy. Some examples include Down Syndrome, Fragile X Syndrome, Muscular Dystrophy
- Neurological disorders: Epilepsy, a seizure disorder, affects up to a third of individuals with Autism. By contrast, it only occurs in 1 to 2% of the general population. Proper treatment of Epilepsy is crucial to prevent brain damage. Hydrocephalus, an accumulation of cerebrospinal fluid in the brain’s ventricles, can also co-occur with Autism to present a complex medical situation. These individuals require ongoing medical care and monitoring.
- Gastrointestinal disorders: These can include chronic constipation, abdominal pain, gastroesophageal reflux, and bowel inflammation. These disorders are nearly 8 times more common in children with Autism.
- Respiratory problems: Research has shown that very young children who exhibit frequent ear and upper respiratory signs, such as mouth breathing or colds, appear to have an increased risk of a subsequent diagnosis of Autism.
- Mental health disorders: Anxiety and mood disorders, such as anxiety, depression, bipolar disorder, obsessive-compulsive disorder, and ADHD, are common co-occurring disorders that individuals with Autism generally develop. For example, depression affects 7% of children and 26% of adults with autism compared to 2% of children and 7% of adults without Autism. Anxiety affects up to 42% of people with Autism. These conditions can exacerbate the core symptoms of Autism.
Sensory and motor challenges
Sensory and motor challenges can also significantly impact the life expectancy of individuals with Autism.
- Sleep challenges: Over half of the children diagnosed with Autism, and possibly as much as 80% of children with Autism, have one or more chronic sleep issues. These problems persist into adulthood with many individuals having difficulty falling asleep and staying asleep throughout the night. These sleep challenges can worsen behavioral challenges, interfere with learning, and decrease quality of life.
- Accidents: Accidents are the number one reason for a lower life expectancy in individuals with Autism. Guan and Li (2017) found that individuals with Autism were three times more likely to die as a result of injuries than the general population. Many of these accidents result from sensory sensitivities such as overstimulating environments.
- Feeding/eating issues: Feeding and eating challenges affect roughly 70% of the Autism population. These can include extremely restricted food habits or aversions to tastes and textures. For example, a child with Autism may only eat crunchy foods on a blue plate. On the other hand, some individuals with Autism are at risk of chronic overeating which can lead to obesity. This can stem from an interoception challenge such as the inability to sense “fullness” or eating can serve as a sensory soothing behavior.
- Pica: Pica is the eating of non-food items and is a particularly dangerous tendency. It affects between 14% to 28% of individuals with Autism compared to 3.5% of the general population. Individuals with Autism who have intellectual challenges are more likely to be affected by Pica.
Socioeconomic Factors for Autism Life Expectancy
Despite some individuals experiencing reduced symptoms over time, they can still have significant challenges during adulthood. Socioeconomic factors such as employment and educational opportunities impact the life expectancy of individuals with Autism.
Employment opportunities: Research suggests that individuals with Autism often face challenges in the working world. For example, sensory issues can be an obstacle. Noisy or crowded office spaces can overstimulate people with Autism and make it difficult to concentrate. Another example is difficulty understanding social cues which can lead to missed opportunities or misunderstandings with superiors. Shattuck et al. (2012) found that two years after high school graduation, approximately 50% of young adults with Autism did not have any paid job experience, technical education, or college education.
Social isolation: Many individuals with Autism experience feelings of alienation and exclusion. Research indicates that individuals with Autism are 6 times more likely to attempt to commit suicide than the general population. Furthermore, they are 7 times more likely to die by suicide than the general population. Some of the most common factors attributing to suicidal thoughts among individuals with Autism are loneliness, communication difficulties, and a lack of support.
Addressing Health Disparities
Identifying physical problems in individuals with Autism can be challenging due to a lack of understanding, barriers to vital services, and inadequate care. As a result, there is a pervasive disparity in healthcare for those with Autism.
Access to healthcare
Individuals with Autism face numerous barriers when accessing healthcare services. One such barrier is that the presentation of physical issues in Autism can be peculiar. For example, individuals with Autism can respond to pain or discomfort with aggression. Many healthcare professionals may not recognize this as a symptom of a medical condition. Instead, it will be viewed as a behavioral challenge, with the root, medical cause being missed. This can occur for serious and life-threatening medical issues.
Individuals with Autism can have interoceptive processing differences which means they have difficulty recognizing and communicating what is happening within their bodies. In addition, some Autistic individuals also have learning difficulties which can lead to challenges in explaining pain or discomfort. This means physical health problems go undetected.
Research has shown that 80% of individuals with Autism have difficulty visiting general practitioners. They struggle with organization such as booking appointments, not feeling understood, difficulty communicating with doctors, and sensory overload resulting from rooms that may be overly bright and stark white.
Many healthcare professionals have never received training in Autism, and few have a good grasp of the physical health challenges they may face. In addition, general practitioners tend to underestimate the number of patients with Autism they have in their practice. To improve the life expectancy of individuals with Autism there need to be healthcare reforms.
Medical professionals should maintain a high level of suspicion towards physical health problems in Autism and provide regular physical health checks. They need to be trained to identify the atypical signs of physical health conditions in individuals with Autism. A liaison nurse can be assigned to help those with Autism navigate the communication requirements, ensure the right information is provided to the doctors, and mitigate any sensory needs for the patient.
Healthcare professionals with knowledge of and experience with Autism will be better able to understand and connect with their patients. This will produce more honest and open conversations that are more likely to yield the necessary information needed to guide them through physical and mental health issues.
Early intervention and treatment
Research has shown that those with higher support needs have a shorter life expectancy than those with fewer needs. However, early diagnosis and access to evidence-based early intervention programs can significantly improve an individual’s prognosis and enhance overall quality of life.
Intervention programs that focus on key contributing factors that affect life expectancy will have the biggest impact on individuals with Autism. Executive functioning skills are crucial to being able to navigate the workplace. Individuals with Autism who are employed have an increased life expectancy and are more likely to engage in basic self-care activities such as daily hygiene because of the requirements of the workplace.
Social communication skills are also an important aspect of early intervention for individuals with Autism. These skills can help those within the Autism community to build and sustain good support systems through family members and friendships.
With early diagnosis, early intervention, and ongoing treatment programs, individuals with Autism can develop and maintain vital skills and strategies needed to navigate daily life. This is critical in reducing the level of support needed and in expanding the life expectancy of individuals with Autism.
Quality of Life Considerations
Providing a high quality of life for individuals with Autism involves addressing their unique challenges and strengths. A comprehensive approach to achieving this includes access to healthcare, education, employment, social support, and improved societal attitudes. The goal for Autism should not only be to extend the life expectancy of individuals diagnosed but also to ensure their lives are meaningful and they have a sense of belonging.
Social integration and community support
A high quality of life is dependent on an individual’s ability to engage in meaningful social interactions, create supportive relationships, and feel empowered to make choices. This is especially important for individuals with Autism who typically experience alienation, isolation, dependency, and loneliness.
Most adult intervention programs include vocational training, daily living skills, and functional academics. However, having a high quality of life encompasses much more than this. Adult learning programs should also include aspects of leisure activities, choice-making skills, problem-solving skills, and self-determination. Quality of life is related to an individual’s ability to experience joy and fulfillment, so instruction should focus on choice and control.
A key indicator of a high quality of life is self-esteem, confidence, and overall well-being. One way this can be nurtured is by celebrating the abilities and achievements of individuals with Autism. It is essential to shift the focus from what they need to learn to their accomplishments and contributions made as a part of society.
Recognizing and highlighting these achievements can be done through art exhibits, sporting events, and other platforms. These showcases can be used to challenge stereotypes and promote more inclusive settings. By creating a community that will accept and uplift those with Autism, they are more likely to experience a better quality of life.
Education and employment opportunities
Elements considered when assessing quality of life are education and employment opportunities. Supportive services and programs are vital to ensure equal access and opportunities for individuals with Autism.
Early intervention programs are crucial in teaching social communication skills to young children. Childhood severity in impairment of functional and social-emotional reciprocity is a predictor of mortality in individuals with Autism. Having the ability to socialize and communicate with others increases the quality and quantity of life.
Special education programs can provide tailored support and accommodations for individuals with Autism. These programs aim to address their specific learning needs allowing individuals with Autism to participate in the least restrictive environment.
Therapeutic interventions such as Applied Behavior Analysis, Occupational Therapy, Speech Therapy, Sensory Integration Therapy, and Cognitive Behavioral Therapy can help children with Autism to develop essential skills and coping strategies to handle life events. The more independent a person with Autism is, the higher their quality of life and the longer their life expectancy.
As children with Autism transition into adulthood, these services must be continually provided to meet their changing needs. This can include vocational training, job placement assistance, independent living skills training, and most importantly, continued social skills development.
Strategies for Improving Life Expectancy
To improve the life expectancy of individuals with Autism there must be greater understanding, increased inclusion efforts, and more appropriate support and care. For this to occur there needs to be increased collaboration between healthcare professionals and advocacy to fight stigma and enact policy changes.
Multidisciplinary care approach
Autism is a complex and dynamic disorder with symptoms affecting a person’s language, social skills, adaptive skills, and cognitive skills. As a result of this, a multidisciplinary, collaborative approach is the most effective approach to treating Autism.
A multidisciplinary approach entails close collaboration and effective communication among all professionals working with the individual. Collaboration can occur through joint sessions, debriefing meetings, regular communication, and staying up to date with documentation from other professionals.
Collaboration and cooperation among professionals can increase the effectiveness of strategies and aid in selecting the most appropriate techniques within each discipline. For example, ABA therapists can provide behavior management strategies to be used in speech therapy. Speech therapists can relay the child’s communication and comprehension abilities. Occupational therapists can suggest sensory activities to help regulate a child’s emotions during sessions.
Research has shown that shared goals and consistent use of strategies in all environments and all parts of a child’s daily life can improve a child’s level of progress. Increased progress and lower needs for support can positively impact a child’s life expectancy.
Advocacy and policy changes
Advocacy for individuals with Autism is essential to enact changes in policies in various settings such as schools, the workplace, and hospitals. Advocacy work should focus on recognizing and addressing the rights and necessities of those with Autism. It should strive to provide improved service accessibility, equal opportunities, and appropriate accommodations to create a world where individuals with Autism can succeed.
Increasing awareness of Autism is also a key strategy for dispelling stigma and correcting misconceptions surrounding the disorder. It will contribute to the development of a more inclusive society that will value and respect the unique strengths and challenges of individuals with Autism. By actively engaging in advocacy initiatives and spreading awareness, we can all contribute to the creation of a more supportive and accepting community for individuals with Autism.
Research has shown that individuals with Autism have a reduced life expectancy, but the extent of this reduction varies widely. It is important to remember that everyone with Autism is unique and the numbers presented will not be each individual’s experience.
Rather than focusing on the length of life, it is more worthwhile to focus on the quality of life with an emphasis on empathy, understanding, and support. How can we create a world where neurodiversity is not only accepted but celebrated? How can we create inclusive communities that will allow individuals with Autism to shine? How can we showcase their strengths and unique contributions to society? Answers to these questions will not only improve the quality of life for individuals with Autism but also extend their life expectancy.
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