Study: Girls Diagnosed With Autism About 1.5 Years Later Than Boys

A new study reveals that girls with autism receive a diagnosis, on average, nearly 1.5 years later than boys. This is likely because parents and clinicians tend to notice language delays as the first sign of autism, and the girls in the study had more advanced language skills compared to the boys, say the researchers.

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The best $500 I ever spent: My autism diagnosis

My rule-following autistic brain wouldn’t allow me to think of myself as really autistic until someone officially diagnosed me as such.

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Screening and Referral Practices for Autism Spectrum Disorder in Primary Pediatric Care

RESULTS: Rates of M-CHAT screening were 93% at 18 months and 82% at 24 months. Among 23 514 screens, scores of 648 (3%) were ≥3 (386 at 18 months, 262 at 24 months) among 530 unique children who failed 1 or both screenings. Among screen-failed cases, 18% received a diagnosis of ASD and 59% received ≥1 non-ASD neurodevelopmental disorder diagnosis within the follow-up period. Only 31% of children were referred to a specialist for additional evaluation.

CONCLUSIONS: High rates of ASD-specific screening do not necessarily translate to increases in subsequent referrals for ASD evaluation or ASD diagnoses. Low rates of referrals and/or lack of follow-through on referrals appear to contribute to delays in children’s receipt of ASD diagnoses. Additional education of primary care providers regarding the referral process after a failed ASD screening is warranted.

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The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis

‘High functioning autism’ is a term often used for individuals with autism spectrum disorder without an intellectual disability. Over time, this term has become synonymous with expectations of greater functional skills and better long-term outcomes, despite contradictory clinical observations.

These data indicate that estimates from intelligence quotient alone are an imprecise proxy for functional abilities when diagnosing autism spectrum disorder, particularly for those without intellectual disability. We argue that ‘high functioning autism’ is an inaccurate clinical descriptor when based solely on intelligence quotient demarcations and this term should be abandoned in research and clinical practice.

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The evolution of ‘autism’ as a diagnosis, explained

You can draw a straight line from the initial descriptions of many conditions – claustrophobia, for example, or vertigo – to their diagnostic criteria. Not so with autism. Its history has taken a less direct path with several detours, according to Jeffrey Baker, professor of pediatrics and history at Duke University in Durham, North Carolina.

Autism was originally described as a form of childhood schizophrenia and the result of cold parenting, then as a set of related developmental disorders, and finally as a spectrum condition with wide-ranging degrees of impairment. Along with these shifting views, its diagnostic criteria have changed as well.

Here is how the “Diagnostic and Statistical Manual of Mental Disorders” (DSM), the diagnostic manual used in the United States, has reflected our evolving understanding of autism.

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Large study supports discarding the term ‘high-functioning autism’

Autistic people described as ‘high functioning’ because they do not have intellectual disability often still struggle with daily living skills, according to a study of more than 2,000 people on the spectrum1. The data should put the term ‘high functioning’ out of commission for good, the researchers argue.

The study, the largest of its type, shows that individuals deemed high functioning often have poor ‘adaptive behavior’ — the ability to perform basic tasks such as brushing teeth, tying shoelaces or taking the bus.

Researchers coined the term ‘high functioning’ in two papers published in the late 1980s2,3. It has since become shorthand to describe people with autism who have strong language skills and do not have intellectual disability (an IQ below 70).

For years, autistic people have objected to the label, as well as its counterpart, ‘low functioning,’ saying these terms do not reflect how much support they actually need.

Read more here at Spectrum. 

The Struggles of a Teenage Girl With a Late Autism Diagnosis

Until very recently, autism has been viewed as a male disorder. Statistics have shown that boys diagnosed with autism spectrum disorder outnumber girls at a rate of 4:1. However, Maria Szalavitz provides three good reasons to question these figures, in her 2016 article in Scientific American, “Autism – It’s Different in Girls.”

First, the foundational research on autism had been conducted on boys, meaning that the criteria on which an autism diagnosis is made are based on the presenting characteristics of boys. Second, girls have been less likely to be given an autism diagnosis unless they exhibit more extreme behaviors than boys and have an intellectual disability. Third, autistic girls are different from autistic boys in significant ways which have led to them being overlooked.

Recent research has found that girls on the autism spectrum make more effort to learn and mimic social rules, go to greater lengths to camouflage their social differences, have a stronger desire to connect, and are less likely to exhibit repetitive behavior and obsessive interests. Girls like Nikki very easily fly under the ASD radar. Many are misdiagnosed, diagnosed at later ages or as adults, or never diagnosed at all.

Read more here at Autism Parenting Magazine.

New autism prevalence stats spotlight challenge of early diagnosis

The prevalence of autism in 4-year-old children in the United States has increased — from about 1 in 75 children in 2010 to 1 in 59 in 2014 — to match a previously reported rise in 8-year-old children, according to data released last week by the Centers for Disease Control and Prevention (CDC)¹.

But children are still being evaluated for autism or other developmental conditions later than is ideal, the data suggest.

The trend highlights how difficult it is to diagnose autism in young children, experts say; early diagnosis is important so that children can be treated early.

The autism prevalence they identified among 4-year-olds in 2014 matches the prevalence among 8-year-olds that same year. (The two groups are not directly comparable, however, because the sites in the two studies don’t match up.)

The new study also shows some of the trends in variability among sites: the Missouri site has the lowest prevalence for 2014, at about 1 in 104 children, and the New Jersey site has the highest, at 1 in 35.

The prevalence in New Jersey increased significantly from 2010 to 2014, whereas the numbers remained stable in Arizona and Missouri.

There is no biological reason for the prevalence to vary so dramatically across the U.S., says Walter Zahorodny, associate professor of pediatrics at Rutgers New Jersey Medical School, who led the analysis for New Jersey.

Read more here at Spectrum.

Untangling the ties between autism and obsessive-compulsive disorder

At first glance, autism and OCD appear to have little in common. Yet clinicians and researchers have found an overlap between the two. Studies indicate that up to 84 percent of autistic people have some form of anxiety; as much as 17 percent may specifically have OCD. And an even larger proportion of people with OCD may also have undiagnosed autism, according to one 2017 study.

Part of that overlap may reflect misdiagnoses: OCD rituals can resemble the repetitive behaviors common in autism, and vice versa. But it’s increasingly evident that many people, like Slavin, have both conditions. People with autism are twice as likely as those without to be diagnosed with OCD later in life, according to a 2015 study that tracked the health records of nearly 3.4 million people in Denmark over 18 years. Similarly, people with OCD are four times as likely as typical individuals to later be diagnosed with autism, according to the same study.

In the past decade, researchers have begun to study these two conditions together to work out how they interact — and how they differ. Those distinctions could be important not only for making correct diagnoses but also for choosing effective treatments. People who have both OCD and autism appear to have unique experiences, distinct from those of either condition on its own. And for these people, standard interventions for OCD, such as cognitive behavioral therapy (CBT), may provide little relief.

Read more here at Spectrum. 

Slow onset may explain late autism diagnosis in some children

Some autistic children don’t show traits of the condition until age 5 or later, new research suggests1. Others show a few mild features at age 3 but only later meet the criteria for diagnosis.

The findings suggest that autism traits are not always apparent by 24 months, the typical age for screening. As a result, efforts to bring down the average age of diagnosis, now at 4 years, can only go so far.

“There are some children who do get evaluated, sometimes multiple times, only to get diagnosed later,” says lead researcher Sally Ozonoff, endowed professor of psychiatry and behavioral sciences at the University of California, Davis. “This research is explanatory for those children.”

The results are based on following ‘baby sibs,’ or younger siblings of children with autism, who are at increased risk for the condition. But they should remind clinicians not to rule out autism in older children, even among the general population, experts say.

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Diagnostic Criteria for Autism through the Years

Note: the APA did not publish separate criteria for autism until 1980

DSM I (1952)
000-x28 Schizophrenic reaction, childhood type
Here will be classified those schizophrenic reactions occurring before puberty. The clinical picture may differ from schizophrenic reactions occurring in other age periods because of the immaturity and plasticity of the patient at the time of onset of the reaction. Psychotic reactions in children, manifesting primarily autism, will be classified here.

DSM II (1968)
[autism was not mentioned; the word appears only under the following category]
295.8  Schizophrenia, childhood type
This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical and withdrawn behavior; failure to develop identity separate from the mother's; and general unevenness, gross immaturity and inadequacy of development. These developmental defects may result in mental retardation, which should also be diagnosed.

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Proposed revisions to global diagnostic manual for autism raise concerns

“The definition of autism in ICD-11 and the one in the DSM-5 are not identical, but they’re very, very close,” says Michael B. First, professor of clinical psychiatry at Columbia University and a member of the committee that drafted the mental and neurodevelopmental disorders chapter of the ICD. “So it’s not likely that there’ll be significant differences in who gets labeled.”

However, the ICD-11 diverges from the DSM-5 in significant ways.

Among the most popular features of the DSM-5 is its prominent treatment of sensory abnormalities — such as over- or undersensitivity to sound and touch — among people with autism. The definition of autism in the ICD-11, by contrast, makes no mention of sensory abnormalities.

“Sensory issues may well be near universal in autism,” says Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University in the United Kingdom. “If true, we should count it as a core symptom of the umbrella category.”

Read more here at Spectrum. 

Subtyping the Autism Spectrum Disorder: Comparison of Children with High Functioning Autism and Asperger Syndrome

Since Hans Asperger’s first description (Arch Psych Nervenkrankh 117:76–136, 1944), through Lorna Wing’s translation and definition (Psychol Med 11:115–129, 1981), to its introduction in the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM, 1994), Asperger Syndrome has always aroused huge interest and debate, until vanishing in the DSM fifth edition (2013). The debate regarded its diagnostic validity and its differentiation from high functioning autism (HFA). The present study aimed to examine whether AS differed from HFA in clinical profiles and to analyze the impact of DSM-5’s innovation. Differences in cognitive, language, school functioning and comorbidities, were revealed when 80 AS and 70 HFA patients (3–18 years) were compared. Results suggested that an AS empirical distinction within autism spectrum disorder should be clinically useful.

Read the full article here. 

Archived Webinars from the Autism Research Institute

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Autism’s sex ratio, explained

Autism is significantly more common in boys than in girls. This skewed sex ratio has been recognized since the first cases of autism were described in the 1940s. The exact reasons for the ratio remain unclear. It could be rooted in biological differences between the sexes. Or, some experts say, it may be an artifact of the way autism is defined and diagnosed.

Here’s how researchers estimate and explain the sex ratio in autism.

What is the sex ratio for autism?

Researchers have consistently found more boys than girls with autism when estimating the condition’s prevalence. This has been true regardless of whether the data came from parent-reported diagnoses, reviews of school and medical records, or diagnostic evaluations of children.

The most comprehensive analysis of autism’s sex ratio, published in 2017, drew on data from 54 prevalence studies worldwide. That analysis estimated about 4.2 boys with autism for every girl.

Read more here at Spectrum.

To get an autism diagnosis, girls need worse social skills than boys

From their SCQ scores, the researchers classified about 9 percent of the boys and about 5 percent of the girls as being at risk for autism. Of these children, 112 had a full diagnostic assessment. A random sample of 160 of children who did not score in the ‘at-risk’ range also completed the assessment.

The ratio of boys to girls who went on to be diagnosed with autism is even higher than that of the at-risk group: About 25 percent of the boys received an autism diagnosis, compared with 7.4 percent of the girls.

This result hints that the diagnostic assessment is skewed to finding boys with the condition. Girls who received an autism diagnosis overlapped cleanly with those who met the SCQ cutoff — suggesting the screen is accurate for girls.

Read more here at Spectrum. 

Few parents recognize regression in their children with autism

Many children eventually diagnosed with autism lose social skills between 18 months and 3 years of age. But few parents notice this trend, according to data from a large Norwegian study.

Parents notice regression in only 2 percent of the children who lost social skills, according to the study.

The parents answered a questionnaire about their children’s social skills — such as whether the child follows a pointing finger — when their children were 18 and 36 months. The researchers then noted how many parents ‘prospectively’ reported any loss of social skills. At the latter timepoint, the researchers also directly asked the parents if they had noticed a loss of skills. They considered parents answering yes to this question as ‘retrospectively’ noticing the regression.

About 13 percent of the children had lost skills by 36 months, but parents of less than 1 percent noticed a loss.

Read more here at Spectrum.

Why no one needs a diagnosis of ‘social communication disorder’

Five years ago, a new diagnostic category, ‘social communication (pragmatic) disorder,’ made its debut in the DSM-5, the latest version of the “Diagnostic and Statistical Manual of Mental Disorders.” I was a skeptic: I argued, along with many others, that there simply was not enough evidence for the existence of this condition.

Since the DSM-5 appeared in 2013, research on autism has flourished. At last count, more than 10,000 papers have the term ‘autism’ in the title, according to PubMed. In comparison, there are just 10 papers on ‘social communication disorder.’

Read more here at Spectrum.

Why no one needs a diagnosis of ‘social communication disorder’

Five years ago, a new diagnostic category, ‘social communication (pragmatic) disorder,’ made its debut in the DSM-5, the latest version of the “Diagnostic and Statistical Manual of Mental Disorders.” I was a skeptic: I argued, along with many others, that there simply was not enough evidence for the existence of this condition.

I was also concerned that the category would renew the practice of assigning vague diagnoses, such as pervasive developmental disorder-not otherwise specified, in place of autism, just when the DSM-5 seemed to have put an end to it.

That worry never materialized. And I’m still not sure it’s a useful diagnostic category.

Read more here at Spectrum. 

Early Identification of ASD Through Telemedicine: Potential Value for Underserved Populations

Abstract

Increasing access to diagnostic services is crucial for identifying ASD in young children. We therefore evaluated a telemedicine assessment procedure. First, we compared telediagnostic accuracy to blinded gold-standard evaluations (n = 20). ASD cases identified via telemedicine were confirmed by in-person evaluation. However, 20% of children diagnosed with ASD in-person were not diagnosed via telemedicine. Second, we evaluated telediagnostic feasibility and acceptability in a rural catchment. Children (n = 45) and caregivers completed the telemedicine procedure and provided feedback. Families indicated high levels of satisfaction. Remote diagnostic clinicians diagnosed 62% of children with ASD, but did not feel capable of ruling-in or out ASD in 13% of cases. Findings support preliminary feasibility, accuracy, and clinical utility of telemedicine-based assessment of ASD for young children.

 

Read the full article here.