Archive by Author

ASSORTATIVE MATING

17 Oct

Assortative mating: does it increase the prevalence of autism?

Assortative mating is the social dynamic when persons with similar characteristics, likes, dislikes, and traits, tend to choose each other in close relationships, such as marriage. Research has pointed to a possible role of assortative mating in increasing the prevalence of autism.

Reports of an increasing autism rate worldwide in recent years have raised public health as well as individual parenting concerns. Apart from theoretical knowledge, there is practical interest in knowing the causes of autism in order to engage in and apply optimal responses that could improve the well-being of persons born with autism.

Compared to the general population, assortative mating occurs more frequently in neurodiverse and psychiatric populations including autism spectrum disorder, schizophrenia, and ADHD. Partners who similarly carry those latter conditions are likely to share an abundance of similar genetic variants linked to their condition. Since genetic factors are established as the largest predictor or cause of autism and other neurodiverse conditions, it is expectable that couples with similar genetic variants linked to autism would have an increased likelihood of producing offspring with autism or autism traits. If such is the case, this would potentially result in a relative increase over time in the autism rate in a given population.

Confounding that trend, though, is another research observation – among persons with autism, the rate of fecundity defined as the ability of an individual or population to produce offspring is notably lower than in the general population. (Notably, a lower- than-expected fecundity rate has also been observed among other neurodiverse groups where the rate of assortative mating has also been observed to be higher than expected.) Even in the context of high heritability or genetic transfer, a low fecundity rate when autistic individuals mate would attenuate a possible increased autism prevalence rate.

Autism is established as a complex condition, featuring a range of abilities, talents, and strengths as well as impairments and developmental delays among affected persons. There are references in the literature to variations indicated by “low versus high functioning”, and terms such as “profound autism” indicating persons requiring considerably more support than other autistics, as well as “borderline autism” indicating instances where the individual manifests several indicators of autism yet does not meet the full criteria for a clinical determination of autism. These variations are determined by multiple genes and the combinations of these genes.

In light of that complexity as well as the low fecundity rate among autistic couples, assortative mating can impact not only the rate of autism but also the resulting symptom profile of the autistic offspring. How veridical are these assumptions remains to be known. Nevertheless, knowledge and insight regarding the genetic and possible societal implications, desirable or not, of assortative mating among autistic groups may provide direction and clarity when autistic couples contemplate and make decisions in their choice of a life partner.

References:

Wouter J Peyrot et al. JAMA Psychiatry. 2016, 73 (11). 1189-1195. Exploring boundaries for the genetic consequences of assortative mating for psychiatric traits.

Power, RA et al. JAMA Psychiatry, 2013; 70(1): 22-30. Fecundity of patients with Schizophrenia, Autism, Bipolar Disorder, Depression, Anorexia Nervosa, or Substance Abuse vs Their Unaffected Siblings.

AUTISM – WHAT TERM TO USE?

13 Dec

“Person with autism” or “autistic person”?

By Lirio S Covey, Ph.D.

With increasing awareness of autism spectrum disorder (ASD), increasing mentions and conversations among various involved sectors have occurred and, with this proliferation, a running controversy about the terminology for autism.

The alternative approaches are referred to as “person-first language” (PFL) or “identity-first language” (IFL).

Person-First Language (PFL) which uses the term “person with autism” carries the meaning that autism is a condition that the person “has”. This would imply that the autism, while significant, is only one of several characteristics or features of the person. Thus, the person with autism could also be described in other ways, such as by appearance, unique talent, or occupation. This terminology has been favored by researchers, scholars, and clinicians, in large part as an indicator of respect and avoidance of a stigmatizing stance. Despite the intention to convey a respectful attitude behind its use, the PFL term has not been favored by many in the autism community itself because of its implication that autism is a debilitating condition that can become stigmatizing and potentially isolating.

Identity-First Language (IFL) which uses the term “autistic person” puts the diagnosis or identity at the forefront of the person’s total nature; that is, a determination that the autism is a central feature of the person from which various abilities, proclivities, or disabilities are likely to flow. In IFL, the term autistic is an indicator, potentially neutral, of the person’s diversity from individuals without autism within the larger human community.

What is the preferred term?

The diagnostic communities which include researchers and scholars, when referring in their writings or talks have tended to use the PFL term “persons with autism”. Activists and autistic individuals themselves, by contrast, have been found to prefer the IPL term “autistic person/individual”. Two recent surveys shed some light.

One, conducted, in March 2022 by Autistic Not Weird (an advocacy organization run by and for autistic people) and received more than 11,000 responses of whom 7,491 were autistic yielded these findings. (1)

  • The large majority, 76%, of autistic respondents indicated a preference for IFL, that is, they want to be referred to as an “autistic person” rather than a “person with autism.”
  • Just under 4% indicated a strong preference for “person with autism.”
  • 15% indicated that either term felt appropriate, and about 5% declined to answer the question.
  • By contrast, only 40.9% of professionals working on autism endorsed the IPL (autistic person) term.

Another study, also published in 2022, conducted with 654 autistic participants from several countries, assessed preferences relating to the Self. The following are rates of responses by the participants. Most frequently endorsed was Autistic Person (79.5%), followed by Neurodivergent Person (70.0%), Autistic (70.0%), Person on the Spectrum (32.4%), and “Person with Autism” (23.9%), and “Aspie” (18%). (2). Note that the two latter terms following the PFL mode are endorsed only at a third or less of the time, whereas the terms that prioritized the condition, i.e., Autistic and Neurodivergent were endorsed more than 70% of the time.

These survey results indicate a marked preponderance of preferences among autistic individuals for the IPL term. Following this, a rule of thumb would seem to be that terminology which emphasizes the individual, such as when describing one person, warrants priority. When referring to the general community, however, such as when referring to a diagnostic group rather than an individual, a convenient and workable rubric might be to use the broadly encompassing PFL term – persons with autism.

A caveat is noted. Mindful that context plays a role in the use of language, there may be group-wise differences among autism communities around the world in what terminology is preferred as determined by the group’s particular culture or social practice. Specifically, certain cultures or nationalities may have their own semantic inclinations when referring to autism; knowing those would be of interest.

1. Autistic Not Weird. Results and Analysis of the Autistic Not Weird 2022 Autism Survey. Autism, March 23, 2022.

2. Connor Tom Keating et a. Autism Research, https://doi.org/10.1002/aur.2864

Measures of success

20 Jan

Measures of Success for Adults with Autism

Excerpts from an article in spectrumnews.org, November 17, 2015, by Catherine Lord, formerly professor of psychology at Weill Cornell Medicine and founding director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital. Currently she is Distinguished Professor in Residence at the School of Medicine at the University of California, Los Angeles.

In a study published in Autism, Dr. Catherine Lord and colleagues tracked scores on the Vineland Adaptive Behavior Scale for 179 people with autism as they aged from 2 to 21 years. The Vineland is a caregiver interview that measures a person’s ability to function day to day. The researchers wanted to see what other factors predicted scores on the Vineland. The study objective was to find better ways to assess the quality of life of young adults on the spectrum.

1. Some aptitudes — such as language comprehension and nonverbal cognition —are associated with good daily living skills and independence in adults with autism, just as they are in people without autism.

2. Young adults who have more limited cognitive abilities use fewer daily living skills at age 21 than they did at 18. Two types of skills, in particular, seem to decrease: personal skills, such as taking a shower, and community skills, such as crossing a street or showing a sense of privacy. The researchers speculated that rather than having experienced a decline in ability to perform those behaviors, these young adults had encountered fewer opportunities and motivation to use those skills causing those skills to appear to decline.

3. The opportunities available to teenagers and young adults more generally (non-autistic young adults), such as college courses, internships, extracurricular activities and sports, may not be accessible, appropriate or appealing to those on the spectrum.

4. The significant influence of early intervention was noted. Adults with autism whose caregivers or parents sought out and participated in early interventions have stronger adaptive skills than those whose parents weren’t as involved. In the study sample, a caregiver’s level of involvement in this way had a stronger effect than which therapy they sought or even the total number of hours of treatment during the preschool years.

← Older Entries
Newer Entries →