Authors: Dr. David Nicholas(1), Dr. Ade Orimalade(2), Christopher Kilmer(1), and Aisouda Savadlou(1)
(1) Faculty of Social Work, University of Calgary
(2) Faculty of Medicine and Dentistry, University of Alberta
2. A Note of Caution
3. Context: Perspectives on Neurodiversity and Mental Health
4. Assessment of Co-existing Autism and Mental Health
5. Selected Examples of Co-occurring Mental Health Conditions
6. Support for Co-occurring Autism and Mental Health Conditions
7. Practices of Service/Mental Health Care Providers
8. Support for Caregivers/Supporters
10. Seeking Help
The Public Health Agency of Canada (2014) identifies mental health as "the capacity of each and all of us to feel, think, act in ways that enhance our ability to enjoy life and deal with the challenges we face. It is a positive sense of emotional and spiritual well-being that respects the importance of culture, equity, social justice, interconnections and personal dignity" (para. 2). Some Autistic individuals may experience times of mental health challenge. In general, Autistic individuals are more likely to experience mental health concerns than the general population (Lai et al., 2019). In some instances, these issues can be difficult, but not have a large impact on daily life. On the other hand, more challenging mental health issues or diagnoses can affect quality of life, daily functioning, and outcomes (Lai et al., 2019). It can be difficult to understand which characteristics or challenges are related to autism versus a co-existing mental health issue, and in turn, which path is best for treatment and support.
In an informative online resource entitled “Mental Health Literacy Guide for Autism” ( https://www.yorku.ca/health/lab/ddmh/wp-content/uploads/sites/407/2021/04/Mental-Health-Literacy-Guide-for-Autism.pdf ), the authors note the importance of improving mental health understanding for increasing knowledge, accessing needed help, and reducing stigma. We recommend that helpful resource as it focuses on learning about and supporting positive mental health.
In the following overview, we briefly review selected mental health challenges or “diagnoses” as described in the Diagnostic and Statistical Manual of Mental Disorders (5th ed., DSM-5 text rev.; APA, 2022) (DSM-5-TR) (with the exception of our inclusion of “autistic burnout” which is not indicated in DSM-5-TR). For each identified mental health challenge/condition, we refer briefly to research that addresses its co-occurrence with autism. This overview is not a comprehensive guide to mental health and autism. Instead, it only briefly identifies elements of some potentially “co-existing” mental health challenges: (A) anxiety, (B) depression, (C) attention-deficit/hyperactivity disorder (ADHD) (note that some individuals who align with neurodivergent-affirming care do not see ADHD as a mental health challenge, but rather an expression of difference), (D) bipolar disorder, (E) autistic burnout, (F) eating disorders, (G) obsessive compulsive disorder (OCD), (H) post-traumatic stress disorder (PTSD), and (I) schizophrenia and psychosis. We recognize that many other mental health challenges exist, but these are not addressed in the limited pages of this overview.
This overview also includes a reflection and commentary based on conversation with Dr. Ade Orimalade, a psychiatrist specializing in autism and mental health. Dr. Orimalade is an Assistant Clinical Professor in the Department of Psychiatry, Faculty of Medicine and Dentistry at the University of Alberta.
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2. A Note of Caution
This overview is written with multiple audiences in mind such as Autistic individuals, family members, allies, supporters, and service providers. We hope that it is informative, but we recognize that the information could be triggering or upsetting. It is important to remember that reference to challenges, diagnoses, or difficult experiences, do not imply that all Autistic individuals experience these challenges.
If you or another need help or support, we strongly encourage you to reach out to your physician or a mental health therapist or others who you find helpful. If you are in need of immediate help, go to the Emergency Department at your local hospital or contact 911. Calling 911 is an important option if you are in urgent distress and in cases of emergency. Other important resources include crisis lines and for some, text-based crisis lines may be particularly helpful due to being more accessible. A list of resources can be found at the end of this overview.
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3. Context: Perspectives on Neurodiversity and Mental Health
There are multiple ways of approaching and understanding autism, neurodiversity, and mental health conditions. Traditionally, the medical model has perceived autism as a ‘disorder’ and approached treatments as a way to address autistic features (Shyman, 2016). The DSM-5-TR (APA, 2022) is the primary guide used by clinicians in North America to specify the criteria for a diagnosis of autism, as well as for diagnosing a mental health condition.
Other approaches have emerged in neurodiversity that offer alternative ways to understand autism that are not based around notions of ‘deficit’ or ‘disorder’. The social model of disability, for instance, identifies ways in which barriers within society impose challenge for individuals. For example, barriers in society and the employment sector may make it difficult for neurodiverse individuals to obtain meaningful employment (Oliver, 2013).
The neurodiversity perspective challenges notions of ‘deficit’ and ‘normal’, suggesting that brains are diverse. In this model, there is no ‘normal’ brain, and autism is located within this overarching neurodiversity (Baron-Cohen, 2017; Singer, 1998). The neurodiversity perspective offers an important lens in identifying individuals as diverse with a range of strengths and challenges (Robertson et al., 2009). As noted in an AIDE Canada toolkit on autism and ADHD, three components of neurodiversity are that, “1) neurodiversity is valuable, and reflects the natural variation in humans, 2) the concept of a ‘normal’ or ‘healthy’ brain is a social construction, and 3) like other forms of human diversity, the acceptance of neurodiversity can be ‘a source of creative potential’ (Walker, 2014)” (see AIDE Canada toolkit entitled, “Considering the Co-Occurrence of Autism and Attention Deficit/Hyperactivity Disorder”, at https://aidecanada.ca/resources/learn/asd-id-core-knowledge/considering-the-co-occurrence-of-autism-and-attention-deficit-hyperactivity-disorder ).
The neurodiversity perspective calls attention to the parts of our society that create challenges for Autistic individuals, and promotes critical reflection and a shift toward making proactive changes (Robertson et al., 2009). Many neurodivergent individuals feel marginalized in society, which can have a negative impact on well-being. While some shifts within society have started, more changes are needed to create accessible spaces and opportunity for thriving.
These newer perspectives are important to consider when critiquing ableist, i.e., discriminatory and marginalizing, assumptions and imposed barriers. Challenging ableist ideas and practices can go a long way in supporting well-being. These different ways of understanding autism are an important backdrop for clinicians when they assess and support individuals for autism and/or mental health challenges.
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4. Assessment of Co-existing Autism and Mental Health
In a review of the literature (meaning a planned comparison of several studies on a specific topic), Deprey & Ozonoff (2018) report that over 70% of Autistic children meet the criteria for additional behavioural or emotional challenge, and more than 40% have two or more mental health diagnoses. Untangling one or more diagnoses with autism can be challenging (Autism Mental Health Literacy Project [AM-HeLP] Group, 2021). Deprey & Ozonoff (2018) list some of the impeding factors that may affect the assessment process: a) standardization and norming of assessment tools; b) self-reporting; c) differences in expression; d) principal, secondary, and differential diagnoses; and e) age and gender. Each of these factors are briefly mentioned below, with further reflection offered by Dr. Orimalade. For more detail, we suggest referring to the work of Deprey & Ozonoff (2018). Following these areas of consideration, various areas of mental health challenge or diagnoses are briefly presented.
a) Standardization and Norming of Assessment Tools
The assessment tools used by clinicians to diagnose mental health conditions have gone through a process of standardization and norming. Standardization means that the tool has been made uniform so different people can administer it, and results can be scored in the same way. Standardized tools go through a rigorous process of fine-tuning to ensure the tools are accurately measuring what they intend to measure. Norming refers to the average expected score on a given assessment tool. Unfortunately, Autistic individuals typically have not been included in the standardization process, bringing into question how accurate these tools may be for them.
Clinicians gather information from individuals’ self-report of their thoughts, feelings, and internal experiences. For some Autistic individuals and particularly individuals with intellectual disability and/or communication challenges, expressing this often-abstract information may be difficult. Others, however, may have no or little challenge reporting these items.
c) Differences in Expression
Autism can impact the expression of other conditions (e.g., mental health challenges) or vice versa. An example given by Deprey & Ozonoff (2018) includes anxiety for an Autistic person appearing in the form of an insistence on sameness possibly instead of physical signs of anxiety, such as an upset stomach or headache. In a presentation focusing on anxiety and depression in autism, Dr. Roma Vasa notes that Autistic individuals can develop mental health issues similarly or differently than non-autistic individuals. Variation in how challenges are expressed can potentially reflect a range of factors such as the presence/lack of presence of intellectual disability, neurocognitive differences, variation in verbal skills, and/or emotion expressiveness (Pathfinders for Autism, 2021). Diagnosticians and clinicians need to consider this range of expression, including (i) guidance from the DSM-5-TR, but also (ii) being attentive to what Dr. Vasa calls, “distinct presentations” among Autistic individuals. Precision in assessment by the diagnostician/clinician is important to avoid missing what is truly being experienced by the Autistic individual and importantly, deciding what resources/interventions to offer. For more detail, see Dr. Vasa’s presentation entitled, “Tackling anxiety and depression in autism spectrum disorder” at https://www.youtube.com/watch?v=WzTsX9OjqMU (Pathfinders for Autism, 2021).
d) Principal, Secondary, and Differential Diagnoses
The DSM-5-TR requires practitioners to assign one diagnosis as the principal diagnosis, with other diagnoses considered secondary. A differential diagnosis entails a process of creating a list of possible diagnoses, and then contrasting these to determine the principal diagnosis. It is of course possible that someone may have autism and other diagnoses, but it is also possible that an autism diagnosis may not be accurate and instead, one has a different condition(s) altogether. This possibility highlights how important the differential diagnosis process is for practitioners. Of this challenge, Dr. Orimalade remarked, “The number one barrier preventing individuals with co-occurring autism from receiving adequate support is poor identification of the dual diagnosis. If we don’t identify that a particular Autistic individual also has another mental health diagnosis (if in fact they do), it’s going to be a barrier to that individual receiving adequate support. This poor identification also reflects and leads to gaps in things like training, expertise, and service provision. A lot of Autistic individuals I've met have said, ‘The problem I have is that the psychiatrist just doesn't get me. I go to the office, it’s 5 minutes to just ask some questions. She/he/they doesn't understand what I'm going through.’ Additionally, there are some patient factors that are barriers for communication by some Autistic individuals, such as difficulty expressing feelings.”
e) Age and Sex/Gender
It is important to consider how age and sex/gender may impact a person’s condition and how it is experienced. Reflecting on age, Dr. Orimalade highlighted the importance of considering age differences: “I feel that more research is needed in this area because it's not so clear how autism varies across age. One thing that we can say is that Autistic people seem to, with time, learn some adaptive strategies to cope with some of the challenges they face. As people get older, they are better able to mask and camouflage, or they've learned certain ways of social communication.
But in terms of some of the other core symptoms of autism such as repetitive, restrictive interest and behaviors, and/or rigidity and concreteness, there's no clear-cut research on that aspect. From my experience, I feel that some of those core symptoms don't tend to improve. Things like rigidity and insistence on sameness may become more pronounced. Among some of my patients who are older, their core autistic characteristics tend to be coarser than among the younger population. Sensory sensitivities tend to stay somewhat static.”
An urgent area in need of future research is how sex and gender may be related to autism and co-occurring conditions. We know that gender affects autistic expression, and some co-occurring conditions emerge differently among females than males (see examples in the next section). Sex/gender differences are addressed in an excellent toolkit by Dr. Glenis Benson entitled, “Autism, It's Not Just for Males Anymore: Looking at the Female and Non-Binary Part of the Spectrum” ( https://aidecanada.ca/resources/learn/asd-id-core-knowledge/autism-it's-not-just-for-males-anymore ). These considerations raise important questions related to how sex, autism, and mental health interact, and call for research that addresses sex and gender differences. A reviewer of this document, Dr. Theresa Jubenville-Wood added, “Important to the experience of women is how the current criteria for autism in the DSM-5-TR and assessment tools are largely based on a young, male presentation. Women and girls may not experience the same presentation or challenges, and can be more easily missed by assessment procedures as they currently exist. Age of diagnosis tends to be higher for women given that earlier presentations may not be identified, and a later-in-life diagnosis may have implications on one’s mental health and identity formation.”
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5. Selected Examples of Co-occurring Mental Health Conditions
In the following section, selected mental health challenges/conditions are identified. These brief descriptions include reference to selected literature that has examined the potential co-occurrence with autism for some (but certainly not all) Autistic individuals. As noted earlier, this is not an exhaustive list of mental health challenges; instead, we present only a very limited number of mental health conditions. These brief descriptions lack comprehensive detail; we cannot present the complexity that each mental health condition entails. If more information (including diagnostic detail and criteria, and treatments) is desired, please consult with autism and/or mental health practitioners, and/or seek further resources.
Descriptions below include what is called the ‘prevalence rate,’ which means how many people have a certain condition; this rate may change as more information becomes available. Additionally, we will very briefly and generally touch on treatments commonly used with various conditions. It is crucial to note that treatments need to be personalized for each individual and therefore, assessment by a mental health practitioner is important.
As described in the DSM-5-TR, anxiety disorders go beyond typical nervousness, fears, or anxiety due to their excessive nature or duration, as determined by a clinician (APA, 2022). Anxiety disorders are divided into several different types in the DSM-5-TR (APA, 2022), which are briefly overviewed below.
- Generalized Anxiety Disorder: ongoing and excessive worry about a number of different things, including everyday activities
- Panic Disorder: the experience of panic attacks
- Specific Phobias: excessive fear of something that generally would not be considered harmful
- Social Anxiety Disorder: extreme discomfort in social situations and concerns about being judged, embarrassed or treated poorly in these interactions
- Separation Anxiety Disorder: fears of being separated from someone which goes beyond what is appropriate for one’s current developmental stage
- Agoraphobia: consistent fear and anxiety related to being unable to escape situations such as being in public spaces, crowds, enclosed spaces, or being alone outside of the home
- Selective Mutism: not speaking in certain social situations though the individual does in other situations. This occurs only in children and not in adults
- Substance/medication-Induced Anxiety: anxiety resulting from using or withdrawing from substances (including medications), or anxiety caused by another medical condition (APA, 2022).
Anxiety disorders can start in childhood and can continue into adulthood, especially if not treated (APA, 2022). Treatment may include psychotherapy and/or medication (APA, 2023a).
The DSM-5-TR notes that in the general population, anxiety disorders occur twice as frequently in females than in males (APA, 2022). Studies have found that children in the general population experience anxiety at a rate of 8% to 27%, with adults in the general population experiencing a rate of 13% to 29% (Kent & Simonoff, 2017). Females appear to be diagnosed 1.5 times more often than males (Kent & Simonoff, 2017). In terms of prevalence in the Autistic population, studies report a higher rate of anxiety disorder compared to the general population, with ranges between 42% and 79% (Kent & Simonoff, 2017). Anxiety also appears to more commonly co-occur in individuals with both intellectual disability and autism than in individuals with intellectual disability but not autism (Kent & Simonoff, 2017).
Additional research is needed to explore how autism may impact on anxiety (and vice versa), and what impact the co-occurrence of intellectual disability may have (Kent & Simonoff, 2017). Research is also required to understand how anxiety may change over time as an individual ages (Kent & Simonoff, 2017). Reflecting on this area Dr. Orimalade commented, “Anxiety disorders are one of the most common co-occurring conditions with autism. Social anxiety disorder commonly confuses an autism diagnosis because both Autistic people and people with social anxiety disorder can have increased anxiety in the area of social interactions. People with social anxiety disorder might not have friends, and they might lead a very socially isolated life; one can have that in autism as well. One key difference to differentiate social anxiety disorder from autism will be fear of negative evaluation, which people with social anxiety disorder will have. An Autistic individual does not necessarily have a fear of being negatively evaluated. But to make things even more complicated is that an Autistic individual can also have social anxiety disorder as a co-occurring condition.”
B) Depression (Major Depressive Disorder)
Depression (Major Depressive Disorder) affects an individual’s mood, thinking, and actions. A diagnosis of depression is specified by criteria outlined in the DSM-5-TR – as determined by a mental health practitioner. There are a range of symptoms and criteria for determining this diagnosis. These include depressed mood and/or loss of interest in what was once enjoyed, as well as other criteria including a required number of the following features (each with specific definitions/criteria in the DSM-5-TR): appetite or weight change, less energy, disturbed sleep patterns, difficulty thinking, feelings of guilt and worthlessness, and/or thoughts of suicide (APA, 2022). For a diagnosis, these symptoms need to have affected the individual’s baseline functioning and have been present for at least two weeks (APA, 2022). It is important to note that the assessment for, and diagnosis of, depression reflect multiple considerations and classifications/criteria; therefore, assessment and determination by a mental health practitioner are important.
The literature indicates that some medical conditions can cause symptoms similar to those of depression, so it is important to rule those out (APA, 2022). Also, depression and anxiety often co-occur (APA, 2022; Autism Mental Health Literacy Project [AM-HeLP] Group, 2021). Treatment for depression often involves medication and/or psychotherapy, and individuals are recommended to take steps to live a healthier lifestyle, such as getting adequate sleep and exercise (APA, 2023b).
It is estimated that one in six people in the general population will experience depression in their lifetime, and it is more commonly diagnosed in females (APA, 2023b). Depression among Autistic individuals is reported to be more common than in the general population (Deprey & Ozonoff, 2018). Deprey & Ozonoff (2018) reported primary concerns or indicators of depression among Autistic individuals may include: changes in functioning, increased aggression, increased self-harm, increased irritability, loss of interest in special topics, sleep disturbances, and/or loss of bowel control. Dr. Orimalade remarked, “Somebody who is depressed might present with a very bland facial expression, they might have poor eye contact, their head might be bowed down throughout a social encounter. This is due to the depression, but these also can be autistic features. So there's that ‘lack of interest’ in depression, called anhedonia, that sometimes can also be seen in autism in terms of social withdrawal or avoidance of social interactions.”
C) Attention-Deficit/Hyperactivity Disorder (ADHD)
Based on the DSM-5-TR, ADHD is a neurodevelopmental condition characterized by inattention and/or hyperactivity (APA, 2022). The three presentations of ADHD recognize the different variations in how ADHD features may present: i) mostly inattentive, ii) mostly hyperactive, and iii) a combined presentation whereby an individual displays features of both inattention and hyperactivity (APA, 2022). Features and prevalence of ADHD are different for males and females. ADHD is estimated to have a worldwide prevalence rate of 7.2% among children (APA, 2022). ADHD is more commonly diagnosed in boys (12.9%) than girls (5.6%) (Danielson et al., 2018). However, researchers have suggested that this may be an inaccurate representation as the female presentation of ADHD is different than males, and there is a sex/gender bias in diagnostic tools (Mowlem et al., 2019a; Mowlem et al., 2019b). Treatment often involves medications alongside behavioural training and therapy for both the individual and their caregivers (APA, 2023c).
Prior to the release of the DSM-5 in 2013, diagnostic guidelines did not allow for a co-occurring diagnosis of autism and ADHD (APA, 2013). However, revisions in the DSM-TR-5 now permit a dual diagnosis of autism and ADHD whereby an individual meets the diagnostic criteria for both (APA, 2022). Approximately half of Autistic children (43.8%-54%) are reported to experience ADHD (Casseus et al., 2023; Stevens et al., 2016).
Dr. Orimalade noted that, “ADHD is very difficult to distinguish from autism. There are a lot of autistic people, especially those that have co-occurring intellectual disability, who as part of their autism have sensory and/or movement issues where they have this compulsion to just move around in a way that is similar to ADHD’s hyperactivity.”
For a more in-depth review of autism and ADHD, please see the AIDE Canada review (referred to earlier) entitled, “Considering the Co-Occurrence of Autism Spectrum Disorder and Attention Deficit/Hyperactivity Disorder” at: https://aidecanada.ca/resources/learn/asd-id-core-knowledge/considering-the-co-occurrence-of-autism-and-attention-deficit-hyperactivity-disorder .
D) Bipolar Disorder
Bipolar disorder affects one’s mood and energy level. Individuals with bipolar disorder experience “episodes” related to their mood that can last days or weeks, in addition to periods of neutral mood (APA, 2022). Episodes are typically divided into two types: (1) manic, which involves extreme happiness or irritability, or (2) depressive, which involves intense sadness and fatigue (APA, 2022). Bipolar disorder is classified and differentiated into types (e.g., Bipolar I Disorder, Bipolar II Disorder, Cyclothymic Disorder), based on prescribed criteria (APA, 2022). Medication and psychotherapy are common methods of treatment for bipolar disorder (APA, 2023d).
The 12-month prevalence rate is listed by type, as follows: 1.5% for Bipolar I Disorder and 0.8% for Bipolar II Disorder, with Cyclothymic Disorder having a reported lifetime prevalence rate of 0.4-2.5% (APA, 2022). Studies generally agree that the co-occurrence of bipolar disorder with autism is higher than in the general population (Varcin et al., 2022). While there is not a consensus on prevalence of bipolar disorder for Autistic adults, one estimate is approximately 7.5% (Varcin et al., 2022). Autistic females are more commonly diagnosed with co-occurring bipolar disorder (Varcin et al., 2022). A recent review of the research literature by Varcin et al. (2022) concludes that there is little research on the co-occurrence of bipolar disorder and autism.
E) Autistic Burnout
Autistic burnout is a relatively new concept in the research literature. Consultation with Autistic adults lead to the following definition and characteristics of autistic burnout (Higgins et al., 2021): “Autistic burnout is a severely debilitating condition with onset preceded by fatigue from camouflaging or masking autistic traits, interpersonal interactions, an overload of cognitive input (defined as ‘thinking and mental processing’), a sensory environment unaccommodating to autistic sensitivities, and/or other additional stressors or changes. Onset and episodes of autistic burnout may interact with co-occurring physical and/or mental health conditions” (p. 2365). For autistic burnout, Autistic adults must be experiencing “significant mental and physical exhaustion” and “interpersonal withdrawal” (Higgins et al., 2021, p. 2365), combined with at least one of the following:
- “Significant reduction in social, occupational, academic, behavioural, or other important areas of functioning”
- “Confusion, difficulties with executive function, and /or dissociative states”
- “Increased intensity of autistic traits and/or reduced capacity to camouflage/mask e.g., increased sensory sensitivity, repetitive or stimming behaviour, difficulty engaging or communicating with others” (Higgins et al., 2021, p. 2365).
Autistic burnout is distinct from depression and anxiety disorders, but those conditions can contribute to autistic burnout. One conceptual model lists some key factors that may negatively or positively impact the risk of autistic burnout (Mantzalas et al., 2022):
- Personal demands, such as elevated autistic traits and long-term masking/camouflaging
- Mental strain, such as depression, anxiety, or stress
- Additional variables, such as social expectations around gender, age, life shifts (e.g., expectations related to gender roles, age-related expectations, life/social changes related to aging) which can impose stress on individuals
- Personal resources, such as stimming behaviours, self awareness and social supports
- Wellbeing, such as life satisfaction, sense of belonging and meaningful engagement with communities.
The presence of positive factors and absence of negative factors can help prevent autistic burnout, while the absence of positive factors and the presence of negative factors may increase possible autistic burnout. Reviewing these factors can help to develop strategies to prevent or ease autistic burnout (Mantzalas et al., 2022). For more information on autistic burnout, including strategies addressing autistic burnout, please see AIDE Canada’s “Burnout Collection” of information at
F) Eating Disorders
Eating disorders involve harmful eating behaviours that affect both physical and mental well-being, and can present in a variety of ways. Behaviours associated with all types of eating disorders can cause a variety of physical or mental health complications that can become life-threatening due to the strain placed on the body and mind (APA, 2022). Types of eating disorders noted in the DSM-5-TR (APA, 2022) include:
- Anorexia Nervosa: the fear of gaining weight that uses strategies to lose or avoid gaining weight, such as fasting, dieting, excessive exercise, and/or occasional periods of ‘binging’ (eating a lot in a short time) and ‘purging’ (vomiting or using laxatives to expel food) behaviours. Treatment often includes nutritional education for both the individual and their caregiver (APA, 2023e).
- Bulimia Nervosa: similar to anorexia nervosa, fear of gaining weight is mixed with negative self-evaluation; individuals alternate between behaviours to prevent weight gain and purge food from their body, and intense binging. Affected individuals may be any weight, but underweight individuals are typically diagnosed with anorexia nervosa. Bulimia nervosa is often harder for others to notice as the binging and purging behaviours are often done in secret. Psychotherapy and education for the individual and their caregivers are commonly offered, sometimes with medication support (APA, 2023e).
- Binge-Eating Disorder: similar to bulimia nervosa, but the individual does not engage in the behaviours aimed at preventing weight gain. Treatment approaches may be similar to those used in Bulimia Nervosa (APA, 2023e).
- Avoidant/Restrictive Food Intake Disorder: eating disturbances causing nutritional deficiencies due to not eating, strict food preferences, or anxiety around eating food (such as choking or having an allergic reaction). Treatment often involves meeting with several specialists (mental health, dietary/nutrition) to develop an individualized plan (APA, 2023e).
- Pica: the eating of non-food items, such as paper, rocks or hair, repeatedly for over a month. Individuals may initially be tested for nutritional issues, and then may be engaged in behavioural therapy (APA, 2023e).
- Rumination Disorder: the repeated swallowing of food, then regurgitating it back into the mouth, and then either chewing and swallowing again, or spitting it back out. It must occur for over a month and not be related to a medical condition for a diagnosis to be made (APA, 2022). Treatment may include breathing training to be able to swallow and digest food (Cleveland Clinic, 2019).
Prevalence rates are listed as 0.6%-0.8% in men and women for Anorexia Nervosa, 0.28%-1% in men and women for Bulimia Nervosa, 0.85%-2.8% in men and women for Binge-Eating Disorder, 0.3% of individuals over 15 for Avoidant/Restrictive Food Intake Disorder, 5% for children with Pica, and 1%-2% for children with Rumination Disorder (APA, 2022). Eating disorders are generally more common among females than males (APA, 2022).
The evidence is contradictory for the prevalence of eating disorders among Autistic individuals. Different studies vary in reporting that eating disorders are more versus less common among autistic individuals than in the general population (Lugo-Marín et al., 2019). Studies looking at individuals diagnosed with an eating disorder, have found a high percentage with an autism diagnosis or who score high on autistic trait tests (Inoue et al., 2021; Parsons, 2023). Anorexia nervosa has been identified as the most commonly identified eating disorder in Autistic populations (Lugo-Marín et al., 2019).
Dr. Orimalade stated, “An eating disorder is another common co-occurring condition. It could be that autism results in food preferences due to sensory issues with foods, or rigidity and not wanting to change. In that way they could be seen as having a ‘restrictive eating disorder’. If the person has a distorted sense of body image, that would be pointing more towards a pure eating disorder. Inducing vomiting or taking measures to lose weight like excessive exercise is more in keeping with a pure eating disorder than autism.”
While many Autistic individuals have food sensitivities, restrictive diets, and associated eating challenges, it is important to note that the severity may not warrant an eating disorder diagnosis. The unique experiences, sensitivities and needs of Autistic individuals must be considered and screened for (e.g., medical issues, sensory processing differences, oral motor challenges, preference for sameness, anxiety, environmental factors, etc.) before a diagnosis of an eating disorder is made (see AIDE Canada toolkit entitled, Feeding Differences in Autism Toolkit : https://aidecanada.ca/resources/learn/asd-id-core-knowledge/feeding-eating-issues-toolkit ).
G) Obsessive Compulsive Disorder (OCD)
Individuals with OCD have intrusive thoughts (obsessions) for which they may be compelled to engage in certain behaviours (compulsions). If the behaviours are deemed not to be performed ‘correctly’, the individual may feel intensely distressed, and worry that there will be a negative consequence. For this diagnosis based on the DSM-5-TR, these thoughts and behaviors must interfere with daily life, cause distress and/or take up more than an hour per day. Additionally, for a diagnosis according to the DSM-5-TR, symptoms cannot be attributed to the effects of a substance, medical condition or another mental health condition (APA, 2022).
As an example of OCD, an individual may have an intense fear of being harmed and thus may check that doors and windows are locked repeatedly and excessively (APA, 2022). Treatment for OCD commonly involves a combination of psychotherapy and medication (APA, 2023f).
OCD has a 12-month prevalence rate of 1.2% of the general population, and is more common in females than males (APA, 2022). There is very limited research on the co-occurrence of autism and OCD, and no available estimates on how common it is within Autistic populations (Deprey & Ozonoff, 2018). However, some researchers have suggested that being diagnosed with both conditions is rare (Deprey & Ozonoff, 2018). While OCD and autism features share tendencies towards ritualistic and repetitive behaviours, an important distinction is the purpose of the ritual.
Dr. Orimalade shares that: “OCD can accompany and confound autism. In OCD you have compulsive behaviors that are often repetitive, and you can have that also in autism. For me, what makes the difference between OCD and autism usually is about how compulsive it is or the intention behind the behaviour. For example, with a ritual, is the person thinking that ‘if I don't do this ritual, some adverse thing will happen to me’. In autism, obsessive behavior is more soothing. But in OCD, the behaviour is more distressing. But some Autistic people with intellectual disability may have difficulty describing their emotions and how they feel, so it's difficult to elicit the diagnostic determination that you need.”
H) Posttraumatic Stress Disorder (PTSD)/Trauma
PTSD can occur after an individual experiences a traumatic event, such as violence, sexual assault, or a natural disaster. The trauma can be experienced directly or through seeing or hearing about the traumatic event. PTSD is diagnosed after symptoms have lasted more than a month and cause significant distress and affect one’s functioning (APA, 2022). Treatment can involve psychotherapy, medication and/or support group attendance (APA, 2023g). The DSM-5-TR (APA, 2022) described different types of symptoms that can occur after the trauma:
- Intrusion – involves thoughts, dreams, and flashbacks of the experience.
- Avoidance – involves taking actions to avoid thinking or talking about the experience.
- Alterations in Cognition and Mood – involves distorted thinking and memory; inability to experience positive emotions and being overwhelmed with negative emotions.
- Alterations in Arousal and Reactivity – involves issues related to being irritable, behaving recklessly, paranoid feelings, and negative changes to concentration and sleep patterns.
PTSD has a lifetime prevalence of 6.8% of adults and 5.0-8.1% of adolescents (APA, 2022). There has been very limited research exploring the co-occurrence of autism and PTSD, and there are no estimates of PTSD prevalence in Autistic populations. However, the limited available research suggests that Autistic individuals are more likely to experience trauma and PTSD (Haruvi-Lamdan et al., 2020). Furthermore, there are indicators that the experience of trauma potentially differs between Autistic and non-autistic populations (Haruvi-Lamdan et al., 2020; Rumball et al., 2020). Reported autistic experiences of traumatic life events related to non-physical bullying and social difficulties are not included under current DSM-TR-5 diagnostic criteria, thus suggesting that current diagnostic tools may need to be adjusted specific to Autistic experiences (Rumball et al., 2020).
I) Schizophrenia and/or Psychosis
Schizophrenia and psychosis commonly share overlap. While both can be experienced independent of the other, psychosis is a common symptom of schizophrenia (APA, 2022). Schizophrenia is a brain difference where symptoms alternate between dormant and active. Active symptoms can appear as hallucinations and disconnection from real experiences, difficulties in thinking (including memory) and speaking, challenges expressing emotions, or behaviours that may seem unusual(APA, 2022). Symptoms of schizophrenia, as specified in the DSM-5-TR, need to meet specific criteria, including duration, before a diagnosis can be made. Medications and psychotherapy are common methods of treatment (APA, 2023h).
Psychosis specifically “refers to a set of symptoms characterized by a loss of touch with reality…. When someone experiences a psychotic episode, the person’s thoughts and perceptions are disturbed, and the individual may have difficulty understanding what is real and what is not” (APA, 2023h, para. 5).
Schizophrenia is estimated to have a prevalence rate of 0.3%-0.7% among the general population. Literature has generally noted limited information on the co-occurrence of autism with schizophrenia (Deprey & Ozonoff (2018) and psychosis (Varcin et al., 2022). One review provides a broad estimation that schizophrenia occurs in approximately 0-35% of the Autistic population (Chisholm et al., 2015). Another review estimates that psychosis is experienced by 9.4% of Autistic adults (Varcin et al., 2022), which is significantly higher than the estimated 0.75% of people in the general population who will experience psychosis in their lifetime (Moreno-Küstner et al., 2018). Dr. Orimlade remarked: “around 9% of Autistic people have psychosis as a co-occurring condition, and psychosis occurs mainly in adults.” It is additionally noted that there is inconclusive information on whether co-occurring intellectual disability within Autistic populations has an impact on the prevalence rate of psychosis (Varcin et al., 2022).
Diagnosing schizophrenia and psychosis is recognized to be challenging within the Autistic population. One article on schizophrenia suggests that similarly presenting symptoms, such as sensory sensitivities looking like potential hallucinations, or overlapping symptoms of ritualistic behaviours and social withdrawal may be causing diagnostic confusion in Autistic populations (Deprey & Ozonoff, 2018). Dr. Orimalade noted that: “The common symptoms of psychosis seen in Autistic individuals are hallucinations. And therein lies the difficulty in teasing out whether, for example, when Autistic individuals have self-talk – are they just processing information, or are they are responding to hallucinations? Having imaginary friends is very common in autism, but could it be a delusion that they have this friend that they are relating to and interacting with? Sometimes people can see this happening visibly, such as keeping the chair next to them free because they say, ‘this is for my friend’. But then people are not sure: Is this psychosis or autism? Getting it right is important because it has implications for treatment. If it's psychosis, we need to treat with antipsychotic medication.”
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6. Support for Co-occurring Autism and Mental Health Conditions
Creating improved assessment resources is a key step toward better support for Autistic individuals with co-occurring mental health conditions. As noted in the example of PTSD above, assessment tools may need to be developed or revised to better fit for the range of experiences and presentations within autism. The assessment step is critical, noted by Dr. Orimalade: “Diagnosis of mental health conditions can be very difficult, especially when autism is co-occurring with intellectual disabilities. Mostly, the diagnosis is made from clinical history, which is the same way diagnoses are made for general psychiatric or other conditions. A good clinical history is so important. We also get collateral information from caregivers, families, and others who know the individual’s baseline because often what we use to make the diagnosis is a deviation from the baseline. For example, we might see a shift from an Autistic person who has an imaginary friend but is coping and functioning, to psychosis because the way that individual is reacting to the imaginary friend who they have always had, is now so extreme. There are some tools that can be used to filter out symptoms of co-occurring psychiatric conditions, but nothing beats a thorough clinical history.”
While interventions for various mental health challenges go beyond the focus of this overview and require assessment and support by a mental health practitioner, general information is available online such as information offered by the Autism Mental Health Literacy Project (AM-HeLP) Group (2021), entitled, “Mental Health Literacy Guide for Autism” (1st digital Ed.). In that resource, general information about assessment, psychosocial support, and medication are offered (see Section 7 entitled, “Autistic Mental Health and Formal Supports”: https://www.yorku.ca/health/lab/ddmh/wp-content/uploads/sites/407/2021/04/Mental-Health-Literacy-Guide-for-Autism_Section-7.pdf ).
Also, self-care strategies are identified such as mutual aid, “Spoon shares”, “Pods”, as well as psychological, physical, social, environmental and spiritual strategies (see Section 6 entitled “Strategies to Promote Well-Being”: https://www.yorku.ca/health/lab/ddmh/wp-content/uploads/sites/407/2021/04/Mental-Health-Literacy-Guide-for-Autism_Section-6.pdf ).
Some strategies particularly related to autistic burnout are briefly presented in the AIDE Canada toolkit entitled, “Autistic Burnout Part 2: Prevention and Recovery Strategies”: https://aidecanada.ca/resources/learn/asd-id-core-knowledge/autistic-burnout-part-2---prevention-and-recovery-strategies .
Very briefly reflecting on the important area of medication use, a recent review of the literature indicated problematic issues. For instance, the effects of antipsychotic drugs for treatment among Autistic people requires more research, and existing research suggests a high rate of metabolic issues in Autistic children as a result of certain antipsychotic drug use. These kinds of findings highlight the need for careful monitoring and research (Iasevoli et al., 2020). Also, Dr. Vasa notes the concern that in some cases, medication intake may not be tolerated by an individual (Pathfinders for Autism, 2021).
Beyond ensuring accessible and appropriate mental health assessment and services to Autistic individuals, Dr. Vasa notes the importance of ensuring support relative to other valued elements of individuals’ lives (e.g., learning, functioning, vocation, housing, etc.) (Pathfinders for Autism, 2021).
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7. Practices of Service/Mental Health Care Providers
Dr. Jubenville-Wood studied the needed traits and practices of mental health practitioners who are supporting autistic individuals with mental health issues (manuscript in review, 2023). She interviewed Autistic individuals about their experiences in therapy, and found that trust, respect from the practitioner, practitioner knowledge about autism, and therapy tailored to the needs of the individual, contributed to more positive experiences. Barriers to positive experiences included feelings of not being heard, practitioners trying to “fix” autism features, interventions that did not have tangible outcomes, a lack of structure to the session or a format which required the Autistic individual to direct the session, and an overall lack of knowledge on the part of the therapist about autism and/or the individual’s specific needs.
After also interviewing therapists working with these Autistic individuals with co-occurring mental health concerns, Dr. Jubenville-Wood (manuscript in review, 2023) suggested that positive outcomes are supported when practitioners engage in mental health best practices, with modifications that are tailored to the needs of the Autistic individual. Dr. Jubenville-Wood added, “I also see intervention at the societal level as really important here. Mental health issues and their causes are complex, but we cannot overlook the fact that the social context and experiences one has as a neurodivergent individual in a largely neurotypical society, can impact one’s mental health. Intervention within our communities, workplaces and school systems can include providing education about autism, dispelling stereotypes and engaging in meaningful practices that include and celebrate differences.”.
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8. Support for Caregivers/Supporters
In many instances, family caregivers or supporters do much to support the Autistic individual, and may themselves experience challenges. They also may need and could benefit from support (Autism Mental Health Literacy Project [AM-HeLP] Group, 2021; Lunsky & Weiss, 2012). Although not the focus of this overview, support resources for family caregivers/supporters are an important priority. Information on the AIDE Canada website includes: Caring-for-the-Caregivers-of-Individuals-with-Intellectual-and/or-Developmental-Disabilities ( https://aidecanada.ca/resources/learn/family-support/caring-for-the-caregivers-of-individuals-with-intellectual-and-or-developmental-disabilities ); and The Sibling Collaborative: A Guide on Mental Health for Adults Who Have Siblings with Disabilities ( https://aidecanada.ca/resources/learn/family-support/the-sibling-collaborative-a-guide-on-mental-health-for-adults-who-have-siblings-with-disabilities ). Helpful information is also available again from the Autism Mental Health Literacy Project (AM-HeLP) Group. (2021) (see Section 9: https://www.yorku.ca/health/lab/ddmh/wp-content/uploads/sites/407/2021/04/Mental-Health-Literacy-Guide-for-Autism_Section-9.pdf ).
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Autistic individuals who experience co-existing mental health challenges have a right to accessible resources that fit their needs, concerns and circumstances. Skilled assessment and support are essential. So too are stigma-free services and communities that support individuals and their caregivers/supporters to move forward and thrive.
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10. Seeking Help
If you or another person needs help or support, we encourage you to access your physician or mental health therapist or others who you find helpful. If you are in need of immediate help, go to the Emergency Department at your local hospital or contact 911. Other important resources include crisis lines and for some, text-based crisis lines may be particularly helpful due to being more accessible.
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- Contact your local Autism Society or Mental Health Services in your region to find resources in your community
- Autism Mental Health Literacy Project (AM-HeLP) Group. (2021). Mental Health Literacy Guide for Autism (1st digital Ed.): https://www.yorku.ca/health/lab/ddmh/am-help/
- Canadian Mental Health Association:https://cmha.ca/
- The Centre for Addiction and Mental Health: https://www.camh.ca/
- Azrieli Adult Neurodevelopmental Centre: https://www.camh.ca/en/science-and-research/institutes-and-centres/azrieli-adult-neurodevelopmental-centre
- Healthy Minds Program App: https://hminnovations.org/meditation-app?gclid=Cj0KCQjw8uOWBhDXARIsAOxKJ2HGf5PSV8tTmkJhliIYHW0q4pKu16RwbQExLDTXqkV6qlyQ01FGRDoaAieoEALw_wcB
- Mental Health Challenges Faced by Autistic People Webinar – Dr. Meng-Chuan Lai: https://www.youtube.com/watch?v=EHhlLxBs5yk
- Autism Ontario - Webinar - Promoting Mental Health in Autistic People - with Jonathan Weiss: https://www.youtube.com/watch?v=b5wkTSZLJBk
- Autism and Anxiety webinar from AIDE Canada: https://aidecanada.ca/resources/learn/crisis-response/autism-and-anxiety
- Autism and ADHD webinar with Dr. Benjamin Yerys of the Children’s Hospital of Philadelphia: https://www.youtube.com/watch?v=QE91bFwuhIc
- Depressed Mood in Autism - Dr Kaite Gotham , Kennedy Krieger Institute: https://www.youtube.com/watch?v=2my_yYD7alE
- Psychiatry Advisor - Depression With Autism: Effective Diagnosis and Treatment: https://psychiatryadvisor.com/home/depression-advisor/depression-with-autism-effective-diagnosis-and-treatment
- Psychology Today; Erin Bulluss, Ph.D., and Abby Sesterka - Dépression et antidépresseurs : mon expérience. Julie Dachez: https://www.youtube.com/watch?v=VVU4veQ5IXcResources
- Tackling Anxiety and Depression in Autism Spectrum Disorder – Dr. Roma Vasa, MD:https://www.youtube.com/watch?v=WzTsX9OjqMU
- “Autistic burnout” series: Information on the AIDECanada Website: https://aidecanada.ca/resources/learn/asd-id-core-knowledge/burnout-collection
- Autism and Eating Disorders Across the Lifespan Webinar - https://www.youtube.com/watch?v=-XDvVmJdUT8
- Autism and Eating Disorders in Teens: A Guide for Parents and Professionals: https://library.aidecanada.ca/cgi-bin/koha/opac-detail.pl?biblionumber=1386
- Supporting Autistic People with Eating Disorders : A Guide to Adapting Treatment and Supporting Recovery: https://library.aidecanada.ca/cgi-bin/koha/opac-detail.pl?biblionumber=1995
- Autism and PTSD webinar from AIDE Canada: https://aidecanada.ca/resources/learn/asd-id-core-knowledge/autism-and-ptsd-overlapping-overwhelming-and-under-recognized
- Diagnosis and Treatment of Psychosis in Autism Spectrum Disorder webinar with Dr. Jean Frazier: https://www.youtube.com/watch?v=5gLXKIIekXo
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