Autistic People Die Young

In The Politics of Autism, I write:

Autism often involves a range of other co-occurring conditions: intellectual disabilities (e.g., low IQ); delays in gross motor skills (e.g., walking, throwing) and fine motor skills (e.g., writing); attention problems and hyperactivity; anxiety; self-injurious behavior; unusual sensitivity to certain sounds, smells, or feelings; extreme food selectivity; and sleep disorders. For autistic people and their families, the co-occurring conditions may cause as much anguish as the autism itself.

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Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs.Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

Ariana Eunjung Cha reports at The Washington Post:

Researchers looking into mortality trends and autism have made a troubling discovery: People on the autism spectrum are dying young — some 12 to 30 years earlier than might otherwise be expected.

The analysis, conducted by Sweden's Karolinska Institute and published in the British Journal of Psychiatry, found that the leading cause of premature death in autistic adults isn't due to diseases, such as heart ailments or cancer, that are the main killers in the general population. It's suicide.

The data, which includes information on 27,000 people with the social-communication disorder and about 2.5 million who do not have the diagnosis from Sweden's national registries, found that, on average, autistic adults die 18 years younger than their non-autistic counterparts.

An autistic person's age at death also appeared to be impacted by cognitive ability. Those with autism and a learning disability died 30 years earlier on average while those without intellectual impairment died 12 years earlier. Individuals considered to be on the "high-functioning" end of the spectrum with strong language skills — those who might have been diagnosed with Asperger's before the diagnostic criteria changed — still had double the risk of dying young as those without the condition.

From a report by Autistica (UK):

New research confirms the true scale of the hidden mortality crisis in autism. The inequality in outcomes for autistic people shown by this data is shameful, but we must not forget the real individuals and families behind these statistics. Every death is a personal tragedy and a national outrage. For years, society and the healthcare system have ignored the voices of devastated families who have lost autistic loved ones unnecessarily, and far too young. That ends now. We cannot accept a situation where many autistic people will never see their 40th birthday.

National and local government, research funders and industry, as well as the NHS and service providers, all have a responsibility to step up and tackle this issue. Autistica is totally committed to playing our part, raising at least £10m of new funding through our Autism Lifesavers Fund to find answers and start saving lives.

Study from Sweden: No Real Increase in Prevalence

Sebastian Lundström and colleagues have an article in the BMJ titled "Autism Phenotype Versus Registered Diagnosis in Swedish Children: Prevalence Trends over 10 Years in General Population Samples." The abstract:

Objective To compare the annual prevalence of the autism symptom phenotype and of registered diagnoses for autism spectrum disorder during a 10 year period in children.
Design Population based study.

Setting Child and Adolescent Twin Study and national patient register, Sweden.

Participants 19 993 twins (190 with autism spectrum disorder) and all children (n=1 078 975; 4620 with autism spectrum disorder) born in Sweden over a 10 year period from 1993 to 2002.

Main outcome measures Annual prevalence of the autism symptom phenotype (that is, symptoms on which the diagnostic criteria are based) assessed by a validated parental telephone interview (the Autism-Tics, ADHD and other Comorbidities inventory), and annual prevalence of reported diagnoses of autism spectrum disorder in the national patient register.

Results The annual prevalence of the autism symptom phenotype was stable during the 10 year period (P=0.87 for linear time trend). In contrast, there was a monotonic significant increase in prevalence of registered diagnoses of autism spectrum disorder in the national patient register (P<0 .001="" br="" for="" linear="" trend="">

Conclusions The prevalence of the autism symptom phenotype has remained stable in children in Sweden while the official prevalence for registered, clinically diagnosed, autism spectrum disorder has increased substantially. This suggests that administrative changes, affecting the registered prevalence, rather than secular factors affecting the pathogenesis, are important for the increase in reported prevalence of autism spectrum disorder.

From the article:

We believe that our findings indicate that the prevalence of autism spectrum disorder is not increasing in childhood. The research and clinical resources currently devoted to dealing with these problems relate to the possibly mistaken notion that there is an actual increase. This allocation of specific resources to study “the epidemic of autism” should not be allowed to spiral out of proportion. Other developmental disorders, such as intellectual developmental disorder, language disorder, and attention-deficit/hyperactivity disorder may recently have become overshadowed and seem to be missed diagnoses in many instances, where now only autism spectrum disorder is diagnosed (even perhaps when the autism symptomatology is relatively mild). There is growing evidence that these other developmental disorders are at least as good as or perhaps even better indicators of outcome (and hence, sometimes, need for intervention) as autism spectrum disorder in itself.42Research and clinical practice need to refocus on the child’s overall clinical situation and to acknowledge that autism is but one of the many Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations (ESSENCE).43 Children who are clinically impaired at an early age and who meet the criteria for autism spectrum disorder almost always have other developmental disorders and problems that need to be tackled.44 Clinics specialising in autism spectrum disorder are unlikely to be able to cater to all the needs of affected children and their families.

Screening of the Young and Old

In The Journal of Autism and Developmental Disorders, Gudrun Nygren et al report:

Autism Spectrum Disorder (ASD) is more common than previously believed. ASD is increasingly diagnosed at very young ages. We report estimated ASD prevalence rates from a population study of 2-year-old children conducted in 2010 in Gothenburg, Sweden. Screening for ASD had been introduced at all child health centers at child age 21/2 years. All children with suspected ASD were referred for evaluation to one center, serving the whole city of Gothenburg. The prevalence for all 2-year-olds referred in 2010 and diagnosed with ASD was 0.80%. Corresponding rates for 2-year-olds referred to the center in 2000 and 2005 (when no population screening occurred) were 0.18 and 0.04%. Results suggest that early screening contributes to a large increase in diagnosed ASD cases.

In The Journal of the American Geriatrics Society, Joseph Piven and Peter Rabins write:

Autism spectrum disorders (ASDs) are among the most common of the severe developmental disabilities, yet little is known about older adults with ASDs—in particular, how the disabilities and dependencies that result from aging interact with those resulting from ASDs. The aging of the population in Western countries, the increasing rate of diagnosis of ASDs, and the burgeoning use of services for ASDs are converging to create a large, growing influx of older adults with ASDs that could impose tremendous humanistic and economic burdens on the healthcare system and society. An understanding of the epidemiological, biological, psychological, and social aspects of ASDs in older adults is essential for preparing to meet their needs, but studies on ASDs in these individuals are practically nonexistent. This article outlines observations and recommendations of a multidisciplinary expert group convened in March 2010 to characterize gaps in knowledge regarding ASDs in older adults and defines research directions to help individuals, the healthcare system, and society prepare for meeting the needs of this population. The proposed research agenda could help improve the lives of older adults with ASDs and inform research and clinical practice involving younger individuals with ASDs.

Among their recommendations:

• Develop diagnostic criteria and instruments for diagnosis and assessment of the needs of older adults with ASDs. Current diagnostic practice relies on early life history, which is less likely to be available in older adults suspected of having an ASD. Diagnostic criteria will therefore need to take into account adult manifestations of autistic symptoms and the specificity of adult symptom profiles for the diagnosis of an ASD. The development of reliable and valid diagnostic and assessment tools is a prerequisite for conducting descriptive studies of individual and convenience samples and epidemiological population-based samples (#2 and #3 below). Based on recent findings suggesting stable rates of ASD across the life span, it seems likely that there exists a large population of older adults with ASD who have not been identified. No instruments are currently available to geriatricians for screening or diagnosis of this population.
• Conduct cross-sectional descriptive studies in adults of phenomenology, including current symptoms and behaviors, neuropsychiatric features, associated medical conditions, and descriptions of available service and support networks. These studies will be critical in elucidating the magnitude and specificity of problems and suggest potential interventions at individual (e.g., specific behavioral or medical strategies, the importance of screening for selected conditions) and societal (e.g., new approaches to vocational training, development of skilled long term care facilities) levels.