By Fakhri Shafai, Ph.D., M.Ed. | AIDE Canada
Conference Summary: The International Society for Autism Research (INSAR) is the largest autism research conference in the world. This year’s conference took place May 11 – 14 and was a hybrid conference with both remote and in-person events being held in Austin, Texas. There has been a push in recent years to elevate autistic voices and the “nothing about us without us” movement has led to additional events to provide a platform for autistic individuals to share their perspectives. Additional events about culture, diversity, and expanding the number of autistic individuals who are collaborating as equal partners in research projects. Topics for research panel sessions were chosen based on proposals around the world that were in line with the stated goals of the INSAR community.
Introduction: ‘Comorbid diagnosis’ is a term used to describe individuals with more than one health or mental health condition. In autistic individuals, previous research has shown that the most common comorbid mental health diagnoses are anxiety disorders and depression. It has been estimated that between 54% and 79% of autistic adults meet diagnostic criteria for at least one mental health condition, and the onset of these additional mental health conditions is usually in adolescence or young adulthood. Despite these findings, there are few studies focusing on mental health conditions in females on the autism spectrum. In this research summary, an INSAR presentation about a population-based study is described with a special focus on rates of comorbid mental health diagnoses in autistic females along with a link to a widely used mental health screening questionnaire.
*Author’s note: the researchers in this study were not able to distinguish between sex assigned at birth and gender identity as these were not included in medical records for individuals born between 1985 and 1997.
1) Sex Differences in Mental Health in Young Autistic Adults: A Population Based Cohort Study
M. Martini, Karolinska Institute
R. Kuja-Halkola, Karolinska Institute; A. Butwicka, Karolinska Institute; E. Du Rietz, Karolinska Institute; B. D'Onofrio, Indiana University; F. Happe, King’s College London; A. Kanina, Karolinska Institute; H. Larsson5, Örebro University; S. Lundström, University of Gothenburg; J. Martin, Cardiff University; M. Rosenqvist, Karolinska Institute; P. Lichtenstein, Karolinska Institute; and M. Taylor, Karolinska Institute
Background: Mental health conditions like depression and anxiety are being diagnosed in autistic adults at increasing rates. However, these diagnoses are understudied in autistic women, despite evidence that there are often more clinical needs for support in autistic females. Researchers are still exploring why autistic females may have more support needs for mental health conditions, and seeking to determine which mental health conditions are more common in females than males. A problem with most research in this area is that studies tend to include small group of people, making it difficult to draw conclusions about how findings relate to the larger population as a whole.
One way to research a larger group of individuals is to do what is called a population-based cohort design. These studies are also called ‘retrospective’ studies as they usually rely on medical records for a large group of individuals and look back to see which diagnoses or medications are listed for an individual when they were within a certain age range. Patients are given unique identification codes to protect their privacy. Researchers then group the individuals based on one or more diagnoses and run statistical tests to compare the groups.
Some common mental health conditions or disorders that may be listed on a person’s inpatient or outpatient medical record can include:
Alcohol use disorders
Borderline personality disorder
Other eating disorders
Substance use disorders
If a person has one or more of the above disorders in addition to an autism diagnosis, we say they have a comorbid mental health condition. Theoretically, a person should receive more accommodations and/or treatments specific to their combination of support needs, but this does not always happen in practice. It is most often that a person is diagnosed with only one condition to begin with and then will be diagnosed with another once additional concerns/challenges present themselves.
INSAR presentations: How do comorbid mental health conditions present in autistic males and females?
The researchers examined health records in Sweden for individuals born between 1985 and 1997, with a focus on their diagnoses between the ages of 16 and 24 years. The researchers screened the National Swedish Registers (anonymous health and prescription medication records) for individuals diagnosed with autism and any other mental health disorder. Over 1.3 million individuals were included in the study, of which more than 20,000 were autistic (34% female). After running statistical analyses, the researchers found that 77% of autistic women and 62% of autistic men in the study had a co-morbid diagnosis for at least one mental health disorder. This is substantially higher than the rates of mental health disorders in the general population, where 20% of neurotypical women and 14% of neurotypical men have at least one mental health condition.
The most common comorbid diagnoses for both males and females on the autism spectrum were sleep disorders, anxiety disorders, depressive disorders, and self-harm. The researchers took a closer look at which mental health conditions were most common in autistic males versus autistic females. Autistic males were more likely to be diagnosed with substance use disorders than autistic females. Females on the autism spectrum were more likely to be diagnosed with any other mental health disorder compared to autistic males.
What causes the sex differences in comorbid diagnoses in autism?
While retrospective studies are useful for statistical analysis on a large group of people, these studies cannot tell us why these differences exist. The authors of the study suggested that there may be a few contributing factors to their findings:
- The multiple minority theory suggests that intersectionality of being part of more than one disadvantaged group can negatively impact mental health. The premise is that being a female in a patriarchal society along with being autistic in a society built for neurotypical individuals can have a compounding effect on mental health.
- Autism in females is often not diagnosed until a later age as it can often present differently. For instance, more often the presenting language or behaviour delays are less obvious so autism in females may not be detected as early as for males. This delayed diagnosis means that individuals are not receiving support services that may help from a young age. Autistic females are also more likely to have developed compensatory behaviours like masking and camouflaging to “hide” their autism from others. Masking can have long-term effects on the mental health of a person and can lead to autistic burnout.
- Due to the previously mentioned delay in diagnosis, many autistic women are not diagnosed with autism until they have already presented with other mental health challenges.
The authors concluded the presentation with suggestions of better supporting autistic individuals with comorbid diagnoses by expanding mental health services during the transition from adolescence to adulthood, tailoring treatments and services to autistic individuals, and increasing knowledge about how mental health issues can present in both autistic males and females.
How are mental health conditions diagnosed?
Each mental health condition has its own set of diagnostic criteria and screening tools or tests that a professional uses to determine which condition(s) best explain a person’s mental health challenges. Patients may be asked to describe early childhood experiences, eating habits, sleep habits, observations about themselves or others, and their general mood patterns.
One common screening tool for depression is the Patient Health Questionnaire (PHQ-9). This is a self-report questionnaire. The PHQ-9 does not replace a formal medical evaluation but may be helpful in bringing up your concerns with your doctor.
The scores are interpreted by ranges, with lower scores meaning less likelihood of depression:
You can administer and score the PHQ-9 yourself:
What can I do with this information?
While mental health conditions can be challenging, there are various supports and treatments available that can help improve your quality of life. It is important to seek an official diagnosis and speak with your medical professionals about whether one or more of the following options are appropriate for you:
Cognitive Behavioural Therapy (CBT)
Dialectical Behaviour Therapy (DBT)
For more detailed information on the various mental health treatment options available, please see our toolkit: Treating Mental Health Conditions in Autistic Individuals – A Toolkit for Understanding Approaches to Mental Health Care
Center for Addiction and Mental Health Programs and Services: https://www.camh.ca/en/your-care/programs-and-services
Government of Canada – Mental Health Services: https://www.canada.ca/en/public-health/services/mental-health-services/mental-health-get-help.html
National Institute of Mental Health – Health Topics: https://www.nimh.nih.gov/health/topics
INSAR 2022 Presentation: M. Martini, R. Kuja-Halkola, A. Butwicka, E. Du Rietz, B. D'Onofrio, F. Happe, A. Kanina, H. Larsson, S. Lundström, J. Martin, M. Rosenqvist, P. Lichtenstein, and M. Taylor. “Sex Differences in Mental Health in Young Autistic Adults: A Population Based Cohort Study”, May 13, 2022
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Lai, M. C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., ... & Ameis, S. H. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis. The Lancet Psychiatry, 6(10),