World Autism Awareness Day is celebrated annually on April 2 to raise awareness about those with Autism Spectrum Disorder. Dr. Jonathan Leef, a Child and Adolescent Psychologist at Humber River Health, has a highly decorated educational background in developmental psychology, where he developed a particular interest in the study of autism. In honour of the day, Dr. Leef has shared his insight into Autism and the importance of raising awareness and pursuing acceptance.

Tell us about your educational background.
I first completed my undergraduate studies at the University of Toronto (U of T) and focused on developmental and child psychology, as well as a double major in Russian-Soviet history. I then pursued my Master’s degree in developmental psychology at OISE/U of T and looked more closely at theory-of-mind development in children. Following my Master’s, I completed a Ph.D. in school and clinical child psychology at OISE/U of T as well. I then transitioned to York University to do my post-doctoral training in their Developmental Disabilities and Mental Health Lab, where I focused on the mental health needs of autistic children and youth. In recent years, my particular research interests have focused on the sexuality and gender identity of autistic people across their lifespans.

During my undergraduate studies, I volunteered at Centre for Addiction and Mental Health (CAMH), where I developed an interest in developmental disabilities- autism in particular. I became interested in theory-of-mind development and the development of perspective-taking. I also volunteered and did some of my graduate training in the Autism Research Unit at SickKids, and then at the Autism Research Centre at Holland Bloorview, where I still work as a psychologist when I am not at Humber. Throughout my training and career, my interest in and passion for working and connecting with autistic children, youth, and adults have grown and solidified.

What is autism?
Autism is considered a developmental disability or condition. However, it is such a broad spectrum that many of us possess characteristics of autism. When an abundance of these characteristics begins to cluster in one person, this is when it begins to affect their lives and when they may identify as autistic or require an official diagnosis. Rather than a linear spectrum of high and low functioning, which are hurtful terms that are commonly misused, we view autism as a spectrum that is made up of many varied factors and is, therefore, expressed in similarly varied behavioural manifestations. For example, an individual may struggle verbally and cannot properly communicate their needs, even though they may be verbally fluent and bright. Early in development, for instance, a toddler may struggle to orient toward people or use eye contact to gain crucial social information, such as facial expressions, which makes communicating for social purposes more difficult. This is why autism is fundamentally seen as a social communication disorder. A person’s social aspect of life is affected- they may not fully understand how to make or maintain friendships, or may not intuitively pick up on social cues, such as saying the right thing at the right time. I must emphasize that most autistic people are socially motivated and indeed crave social connections; the difficulties are often in how to achieve such social connections.

To identify as autistic, according to the Diagnostic and Statistical Manual of Mental Health Disorders (DSM-5), an individual must exhibit social communication challenges, combined with repetitive behaviours, such as the need for sameness. For example, this insistence on sameness can manifest as being very rigid when playing with toys or games, seriously struggling when daily routines change unexpectedly, or repeating what others say rather than expressing original sentences.

While autism primarily affects males and begins in early development, it does not discriminate and is diagnosed in people of any age, sex, gender, race or ethnicity.

What are the early signs of autism?
I have been privileged to be part of a research study that followed babies from ages six months to age 15 years who were at a genetically higher risk of developing autism due to having at least one older sibling diagnosed with autism. A few of the early signs the researchers identified include:
• Around 6 months, atypical motor movements may be evident and be a significant predictor of an autism diagnosis at age 3.
• Between 6 to 12 months, the absence or reduced presentation of early social abilities is predictive of a later autism diagnosis. These can include limited smiling or other joyful expressions directed to other people, limited or no eye contact, limited or reduced reciprocal sharing of sounds, smiles, or facial expressions, limited babbling, limited or no pointing, waving (e.g., no “bye-bye”), limited or no responding to when the baby’s name is called, and a joint attention issue becomes evident. Joint Attention is an early developmental milestone that forms an important foundation for later social skills, including theory-of-mind, communication for social purposes, and understanding social cues. Joint attention generally includes the sharing of attention with another person, including the use of eye contact to look at an object together or to share an emotional experience.

While this does not entirely indicate a child has autism, there are often language or other communication delays as well.

Why is World Autism Awareness Day significant?
Autism affects roughly 1-1.5% of the population and the numbers continue to increase. From a mental health perspective, these individuals are not receiving the care that they require early on. Many often face a lifetime of invalidation because we are not living in a very autism-friendly world. Autistic people are usually misunderstood and seen as oppositional, disrespectful, or problematic. Their family, friends, and community fail to realize that they are not doing these things to be disrespectful, but because they have Autism Spectrum Disorder and have not been able to receive the appropriate support. Autistic people are viewed in such negative ways that exacerbate their poor mental health conditions later on in their lives. In the mental-health sphere generally, we know that a lifetime of experiencing invalidation is highly correlated with mental health problems; applying a similar lens to autistic experiences may help explain the high rates of co-occurring mental health conditions amongst autistic people.
Awareness leads to acceptance and is important for society to understand how to work and connect with autistic people. For instance, the Emergency Department at hospitals must know how to care for autistic individuals and what to be aware of. The autistic patient may not take well to the bright lights or fast-paced environment. If the ED staff know this in advance, they can approach the situation more effectively, and perhaps avoid an escalation in difficulties as a result.

What resources are available to those with Autism Spectrum Disorder and their families?
For autistic adults and late adolescents, I would recommend the Autism Literacy Guide from York University, which I was a part of developing. It is a very friendly resource about autism that is easy to sort through, with many hyperlinks, videos, and visuals. Autism Ontario and the Ontario Autism Program are also essential sources for the autism and autistic community. The autism and autistic community are very vocal and active. The autism community is anyone working in the field, a friend, a family member, etc. The autistic community is made up of people who identify as autistic and advocate on their behalf. Autistic people have finally found a way of expressing their voices through this community.
Nonetheless, it should be noted that there are not enough resources available, given how prevalent mental health issues are becoming and how strongly they are needed amongst autistic people.

Anything to add?
There are many misconceptions about what causes autism. While we do not necessarily know what causes autism, we do know what does not. For instance, a large misconception is that autism is related to how an individual is raised. A common term used in the 60s and 70s was “refrigerator mother syndrome” when people believed that a problematic attachment to one’s mother could lead to the development of autism. It most definitely does not cause autism. In addition, there is no evidence that vaccines- the MMR vaccine, in particular- cause autism. It is important to remain educated to better understand autism and autistic people for society to appreciate autistic people for who they are – people who are an integral part of our society.