New and Trending Research on Autism published | 28 June What is Autism Autism is hard to define. Not only because the definition itself changes all the time, but because it affects our perceptions, communication, social experiences, learning and behaviour; essentially, everything you need in order to get through the world. Any information that is being processed by the senses can easily over-stimulate an individual who is on the Autism Spectrum. On the other hand, an individual with Autism can also have difficulty processing input from their senses. This is why we discuss Autism, as a spectrum, and say,“If you’ve met one person with autism, you’ve met one person with autism.” How to diagnose ASD In order to be diagnosed with ASD, you need an assessment from a professional who can provide an assessment. This professional can be a doctor, social worker, psychiatrist, or psychologist, who are able to provide a screening using certain tools. In Canada and the United States, we use the DSM-5 as our tool for assessment and diagnosis of Autism Spectrum Disorder (ASD). The DSM-5 essentially is like a take out menu; you pick three criteria from column A, two from column B, and 1 from column C, D and E. The DSM-5 also uses a process called, scaling, where the person being assessed is also rated from 1-3 in terms of severity. This is more subjective, as diagnoses are not applied consistently in clinical practice, and as such are less useful from a treatment standpoint. However, the rest of the world uses ICD-11. The ICD-11 uses 3 subtypes or possible diagnoses: (1) Childhood, (2) Aspergers, or (3) Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). IDC-11 includes profiles such as Pathological Demand Avoidance (PDA) , a profile where those on the spectrum may avoid demands that would even be pleasurable for them. Since there are different tools that could be used in order to assess a person for ASD, it means that we aren’t all communicating or understanding ASD from the same reference point, or speaking the same language, and as a result, researchers are finding it difficult to collaborate and synthesize common or generalizable patterns. Another big concern in trending research is the discrepancies between the age of concern (i.e., when behaviours and traits become apparent) and the age of diagnosis. Parents and teachers alike are noticing behaviours such as missed milestones and other common traits in children quite young that could indicate ASD. But, it takes years for the diagnosis. This is an unfortunate reality when it is expected (across all neurodiverse people) that the earlier the diagnosis, the better. As a result, we are losing critical time. Currently, we aren’t really sure how to screen more effectively, although researchers are doing their best to try to close this gap. What is the importance of an assessment Sometimes, when we are faced with a number of challenges, we need support. Some people may wish to receive support without a formal ASD diagnosis. For others though, an assessment may help an individual with accessing additional therapy or support programs such as, disability credits (for the adult or family & caregivers of a child or teen), an Individual Education Plan (IEP), or workplace accommodations. What is it be included in an IEP The best IEPs should be a living document that is changed and updated regularly and follows the person with ASD throughout their educational career. IEPs are mandated to be updated at least once a year, in the Fall when the academic year begins. However, the most effective IEPs are updated throughout the school year, as new information becomes available (i.e., new assessments, new interests, new motivations for goals, etc). It’s important that it also be reviewed regularly with the child’s teachers to ensure that they are up to date on all of the important details. IEPs should also include information on practical supports and longer term goals. For instance, you can ask yourself or your child if they are struggling with processing reading, emotional self-regulation, or other daily tasks and brainstorm ways in which they will be able to receive support in these areas throughout the day. When considering long term goals, such as establishing greater independence and/or self-advocacy, you’ll also want to consider whether it is achievable. Basically, we don’t want to give somebody with an ASD diagnosis a tool they are unable to use. Some goals, like self-advocacy, are quite lofty for a person on the spectrum and need to be broken down into smaller skills or parts in order for there to be incremental progress and success. Legally, IEPs are also to include a transition plan, by the age of 16. This is a very integral part of planning the next steps, as this person reaches the end of high school. IEPs may integrate strengths-based approaches. Typically IEPs have focused on the student needing support, or to be assimilated in the classroom, rather than focusing on where the student is already demonstrating success. A strengths-based approach views neurodiversity as a normal variation of the human genome that doesn’t need to be fixed. When incorporating this approach, we are working to maximize the students strengths, talents, and interests as well as their deficits and restricted interests. This process is collaborative and includes the student’s goals so that it is a helpful resource and tool for the student. When we aren’t collaborative in this process, the student isn’t invested or engaged, and why would they be? They didn’t contribute to the creation of the IEP or share their perspectives, experiences, goals or interests, which may be vastly different from those being provided by the parents, caregivers or teachers. This approach also considers the functions of the behaviour, not just the problem behaviours. In doing so we are pulling back the outer layers, the outward reactions, in order to understand what is happening for this person and why. If, for instance, a student relies on behaviour for regulation, then what are we going to do to support them? What is something else that could fill that same function or regulation piece? There’s value in setting the bar high. But, it’s also good for students who struggle to feel success, even if it means breaking a goal down into its most elemental parts, so that the student can attain it, feel success, and improve their self-esteem. How to navigate transitions Transition strategies are used to support individuals with ASD during changes or disruptions to activities, settings, or routines, by planning ahead (front loading) before the transition occurs. Transition plans are used to create predictability and positive routines around transitions. They can be presented to the individual verbally, auditorily or visually such as: Visual schedule planning (e.g., a white board, paper, excel spreadsheet); Electronic (e.g., timers, calendars, colour coded schedules and spreadsheets); Social stories; Visual memory may be higher than audio, verbal or written memory. By providing a visual schedule of the plan, the individual will be better able to remember and regulate the progression of how things are going to go. You may also want to include different colours to distinguish the events and the individuals favourite activities into the schedule. This way the individual can see that these rewards or interests are coming too. Electronic transition tools are great indicators that there will be a transition as well. Using an app on a phone or tablet, also allows them to take ownership of the transitions. When presented well in advance, social stories can help with preparing for a new transition, such as going to the airport for the first time. In this example, you can write a story of what happens when we go to an airport and walk the individual through the series of transitions (e.g., when we arrive to the airport, we will have to park, then we will have to get our bags from the trunk, then we will have to walk across a bridge to the planes, then we will have to wait in line to weigh our bags, then we will have to show our passports to get our tickets, then we will have to go through security, etc.). You can also add to this by finding resources online such as written, audio or video stories, as well as photos, that explain why we are following these steps. What is the difference between meltdowns and burnout Meltdowns and burnout both occur when the demands of a situation exceed the individual’s coping skills. Meltdowns are brief, they last for minutes to hours. The function of this behaviour is to indicate to the individual that they have just crossed a threshold, and offers them a chance to withdraw or regain their sense of control. In order to fully understand the reason for the meltdown, we need to understand the motivation behind the behaviour so that we can make a plan for managing it in the future. ASD burnout is a newer topic in research. It was identified as a new ASD experience when individual participants described the experience to researchers, and it was found to be a common trait. Burnout lasts approximately 1-3 weeks. If this time is exceeded, that’s when professionals begin to question if there are concurrent challenges being experienced, such as depression and anxiety. Burnout is brought on by an extended period of masking. We see it in those with ASD, who have higher social skills who are camouflaging their autistic behaviours. This process can be emotionally, mentally and physically taxing, and ultimately leads to losses in function. These skills, that they use to manage, end up getting lost or reduced. Burnout is present in teens, young adults, and adults at any age. It can amplify stimming behaviours or sensory sensitivity. Burnout is usually seen during transition stages, when expectations and behaviours have to change. The individual usually has no idea that the burnout is about to happen, until it does. Repeated meltdowns can also result in burnout. One resource, “No More Meltdowns” by Jed Baker, provides practical solutions for structuring and managing meltdowns and burnout. Video modelling (e.g., we are going to go to the doctor, then to the playground, etc.) also helps the individual to understand the expectations. Social narrative power cards and comic strips also help. The individual can make their own and manage their own emotions, by for instance, giving themselves a power up, when needed. Whichever method is chosen, the most valuable aspect is to ensure that the individual with ASD is buying into the tools. Other supports include offering choice (e.g., to wipe the table now or in 10 minutes or choice boards) as it helps the individual move toward the activity or goal, and provides them with supportive lessons in terms of limiting choices and power over the decision making process. As rule oriented people, individuals with ASD may also appreciate systems that incorporate rules and offer explanations as to why the rules are the way they are. How does ASD impact sexuality and gender There is a lot of research that is coming out quickly, that is related to sexuality and gender among individuals with ASD. But, it is limited because such individuals are such a proportion of our population. What we do know from the research however, is that only 50% of students with ASD are receiving the same level of sex education as their neurotypical peers. These individuals are sharing the same physical and sexual experiences as their peers, but are receiving less education on the topic, have fewer social supports, as well as a reduced understanding and application of social skills and awareness of social aspects. As a result, younger individuals with ASD are at a higher rate of sexual exploitation, especially online. The most common and fastest growing areas of vulnerability and exploitation are those who are in their tweens and teens. People online will ask them to do and say sexual things. They are then recorded, threatened, blackmailed, and bribed into doing more sexual things online. This is especially dangerous for neurodiverse individuals, because of the combination of lacking: (1) theory in mind, that is, they don’t understand that people would have a different motivation than theirs; (2) social skills, which prevent them from finding support or finding their way out of these situations; and (3) any preventative legal protections. Research has also been finding a strong connection between ASD and gender expression. For instance, studies have found that there is a higher prevalence of ASD in trans-individuals. There is also an overrepresentation of Individuals with ASD in gender clinics reports. There’s debate as to what the connection could be. For instance, when there are assessments being done, there are some ASD specific assessment concerns such as research which was exploring sensory factors of restrictive interests. In this study, the researchers noticed that young boys with ASD who were interested in sparkly, silky things and long hair. This finding aligns with social scripts of femininity or feminine interest. As a result, this interest could be a behaviour exhibited by somebody whose is questioning or considering their gender, but it could also be a sensory factor. Issues related to gender and sexuality are typically ignored when overlapping with a disability, generally, whether it’s physical or invisible. There is an assumption that the complexities that accompany gender and sexuality cannot exist, once somebody is diagnosed with ASD. These issues that are related to gender and sexuality, end up being treated as an obsession or transient phase. But there is some question around whether or not this is an issue of perception. For instance, a person with ASD may think, “I am a man, but I love baking… maybe I am a woman.” By assigning baking as a women-only interest, there may be an issue with being unable to distinguish a gender identity through the ambiguities of social scripts. This is why it is so important to discuss topics of sexuality and gender, as well as the assumptions of categorization or black and white thinking (i.e., that it has to be this or has to be that). Individuals with ASD also place less importance on social norms and don’t necessarily read social cues so they may not conform to gender binaries or scripts, as they feel less social pressure to follow these norms. Where to receive additional support and resources If you are interested in: Updating your tools and strategies for working with individuals with ASD; Creating an effective and strengths-based IEP; Learning more on the functions of ASD behaviours and regulation strategies; Mastering skills like advocacy, goal setting, and independent living skills; Exploring sexuality and gender as it relates to ASD; Understanding the rights for accommodations as an ASD person at school or in the workforce; Finding ways to connect with self and others Then, book an appointment with Josh and receive support that is uniquely tailored to your needs. CLICK HERE to view his online schedule and find a date/time that works best for your schedule. ___________ Written by: Josh Rinz Josh Rinz (MA, RP, AAT) has a Bachelor of Science in Biology from the University of North Carolina and a Masters of Theology, specializing in Spiritual Care and Psychotherapy from Wilfrid Laurier University in Waterloo, ON. Josh is a leading expert in the mental health field, especially when it comes to working with neurodiverse children and adults, as well as their caregivers! He is committed to quality, evidence-based therapeutic practices that work in collaboration with his clients to improve their emotional, cerebral, spiritual, and relational wellbeing. Josh brings an enthusiastic and innovative approach to therapy. Working with diverse individuals, families, and caregivers, he believes in the importance of creating a safe and engaging space where clients can explore their personal stories and discover their sense of hope within. Josh has the training, the experience, and a very special interest in working specifically with adolescents on the autism spectrum, as well as neurodiverse people and those with additional special needs and considerations. He strongly believes in supporting the whole ecosystem of an individual, which includes providing specialized support to the families and caregivers.