Dr. Gray Atherton discusses the critical role of age and age of diagnosis in shaping the quality of life for autistic individuals. She provides a brief history of autism understanding and considers how changes in diagnostic criteria and cultural stigmas have affected the “lost generation.” The speaker details two studies that emphasize the importance of early intervention and how best to support people who receive a late diagnosis. Atherton explains that diagnosis directly affects quality of life, making detection and diagnosis critical for adults. She notes that further research must incorporate lived experiences and underscores the need for investment in care across the lifespan. 

Take the knowledge quiz for this presentation HERE

In this webinar: 

2:30 – Autism prevalence estimates
5:00 – Diagnosis differences by gender
8:30 – Autism through the ages
10:30 – DSM description evolution
13:15 – Special education and the Salamanca Statement
17:10 – Changes in autism assessments
18:20 – The lost generation
21:00 – Study: Age of Diagnosis, Autistic Traits, and Quality of Life
23:25 – Results
27:00 – Quality of life and aging
31:00 – Study recap
31:30 – Study: Lived experiences of late diagnosed adults
33:20 – Themes and results
34:25 – Participant quotes
39:00 – How to disclose
41:20 – Overview of study results
44:35 – Future directions
47:22 – References and contact information
47:30 – Q &A

Introduction

Atherton states that autism is a lifelong condition and highlights that less than 1% of research funding goes to lifespan issues in autism. She discusses differences in prevalence rates by country and gender (3:20) as well as environmental and heritability drivers (6:30). The speaker provides a brief history of autism understanding through the ages, highlighting significant milestones and epidemiological studies from 1943 to today (8:30). She details changes in autism prevalence from 4.5 in 10,000 children in 1966 to 1 in 54 children in 2013 (11:30). Atherton attributes the rise in prevalence to improved diagnostic practice and increased awareness and educational inclusion (12:25). 

The “lost generation” refers to autistic individuals who received an autism diagnosis in adulthood and therefore lost the time and support afforded to those who receive an early diagnosis (18:20). Atherton outlines two recent studies investigating why these individuals are being missed and how it affects their quality of life: 

Study One: Age of Diagnosis, Autistic Traits, and Quality of Life

The first study focused on understanding the impact of age of diagnosis on quality of life and autistic traits. Atherton and her colleagues examined a sample of individuals diagnosed with autism later in life by assessing responses to five autism diagnosis and symptom questionnaires (21:00). Findings revealed that about two-thirds of females were diagnosed over 18. In contrast, the majority of men were diagnosed under 18. Despite being diagnosed later in life, females reported high levels of autistic symptoms (24:45). There was a significant association between late diagnosis in adulthood and lower quality of life. These individuals reported higher levels of autistic traits, including social anxiety, loneliness, and lower satisfaction with life. In contrast, earlier diagnosis was associated with better quality of life outcomes (29:15).

Study Two: Qualitative Interviews with Late Diagnosed Adults

The second study involved qualitative interviews with adults who received an autism diagnosis later in life (31:30). Atherton highlights the importance of exploring their lived experiences to gain insights into the challenges and benefits of late diagnosis. Themes found during interviews included barriers to diagnosis, negative sentiments to non-diagnosis, benefits of diagnosis, and the pros and cons of receiving a diagnosis (33:20). The speaker quotes study participants for each theme, demonstrating the intersectionality of late diagnosis and quality of life. Overall, participants overwhelmingly expressed positive sentiments about receiving a diagnosis in adulthood. One person described it as a signpost that provided answers and guidance on how to approach life differently and feel proud of one’s identity (37:29). Diagnosis brought relief, clarity, access to appropriate support, and personal advocacy. However, participants also expressed some barriers to diagnosis, such as parental perceptions and societal misconceptions about autism (39:20).

Implications of Late Diagnosis

Atherton asserts that these findings underscore the significance of early diagnosis in autism (41:25). She highlights diagnostic disparities between men and women and considers potential drivers. The speaker emphasizes that receiving a late diagnosis matters and assures viewers that, although a late diagnosis may be complex and confusing, the identity and understanding that come with it can have a significant positive impact on personal acceptance (43:15). Early detection enables timely interventions, tailored educational approaches, and access to support services, all of which contribute to better outcomes for autistic individuals.

Future Directions

The presenter highlights the need to recognize autism in females and change stereotypes of autism as a male condition. We must also reduce stigmas, continue care into adulthood, and support the “lost generation” as they realize their diagnoses. She asserts the need for increased research into cultural differences, societal perceptions, and access to diagnosis and support (45:00). The speaker also discusses the significance of studying the experiences of individuals from diverse backgrounds, including women, people of color, parents of children with autism, and employment experiences of autistic people.  

Part One: Challenges when your son or daughter is experiencing a difficult time

Paul Shattock provides a parent’s perspective on handling his son Jamie’s challenging behaviors and describes the experiences of other families who have navigated similar situations. This webinar was produced in partnership with the World Autism Organization.

In this webinar

0:00 – History of World Autism Organization|
1:25 – 5:00 – Jamie’s life from birth to age 8
4:40 – First signs of aggression
6:08 – Difficulties with hair cuts
8:40 – Sunderland parents and school
9:45 – Experiences with aggressive outbursts
12:15 – Age patterns for aggression and SIB
13:48 – Experience with pharmacological remedies
16:30 – Jamie’s life today 

Shattock details his son’s behaviors across his lifetime and describes the experiences of his family and community in creating supportive environments for Jamie and his peers. He recounts Jamie’s diagnosis, the disparity between autism science today compared to the 1970s, and their journey through various schools, medication, and community support. Shattock closes by noting that Jamie is now able to work and live away from his parents and that his aggressive behaviors dissipated over time. 

To explore the perspectives of another parent, a pediatrician, and a behavior analyst on aggression and SIB, take a look at Aide Canada’s interview series on Understanding and Supporting Children with Self-Injurious Behaviour. 

Part Two: Teaching Children with Autism How to Communicate Their Wants and Needs 

Lauren Moskowitz, Ph.D., discusses teaching children with autism how to communicate their wants and needs. She reviews communication difficulties in the autistic population and highlights understanding challenging behaviors as communication functions. Moskowitz defines function-based behavior intervention plans and details functional communication training. She provides various examples and advises how to select and teach replacement skills and ensure they are used correctly. Moskowitz describes successful treatment plans and emphasizes the importance of learning to tolerate delays in reinforcements before closing with a Q&A session.

Handouts for Dr. Moskowitz’s talk are online HERE

In this webinar: 

1:00 – Communication in children with autism
3:55 – Communication impairment and challenging behaviors
5:25 – Challenging behaviors as functions of communication
9:40 – Functions of communication
11:18 – How to teach children with autism to communicate wants and needs
12:55 – Principle of functional equivalence
13:50 – How to identify the function
15:50 – ABC flowchart and examples
21:00 – Creating function-based behavior interventions
23:10 – Building replacement skills
24:10 – Functional communication training
25:36 – Replacement skills for gaining attention
27:54 – Replacement skills for escaping disliked activities
29:27 – Replacement skills for obtaining tangible item/activity
30:12 – Replacement skills for obtaining sensory stimulation
32:03 – What communication skills to teach?
32:40 – How will communication skills be taught?
34:17 – How to ensure communication skills will be used?
37:03 – When to teach communication skills?
38:30 – FCT Case Example – Eli
48:37 – Competing with challenging behaviors
50:23 – Learning to tolerate delays
53:12 – Notes from Dr. Stephen Edelson, Executive Director at ARI
56:20 – Q & A

Language and communication difficulties are core symptoms of autism, and around one-third of children with autism are nonverbal or minimally verbal. Moskowitz explains that verbal children often struggle with communication in moments of distress (1:00; 10:45). She emphasizes that communication impairments do not cause challenging behaviors (CB). However, the likelihood of an individual using CB can increase if they have difficulty communicating their wants or needs (3:55). Individuals engage in CB because those behaviors serve a specific function, and behaviors persist because they meet an immediate need (5:25). Throughout the presentation, Moskowitz emphasizes the difference between behaviors and their functions (8:35). She suggests viewing CB as functions of communication and focusing on why an individual exhibits CB instead of the behavior itself (9:40). 

Moskowitz describes functional communication training (FCT) as teaching appropriate functional communicative behaviors to replace CB (11:18). She outlines the principle of functional equivalence (12:55), functional behavior assessments (FBA) (13:50), and the ABC (antecedent, behavior, consequence) flowchart (15:50). She underscores looking for patterns of behavior via direct observations. The speaker presents three examples of observed behaviors and circumstances in the ABC format (16:46) and suggests video recording to help track patterns of behavior and caregiver reactions (19:19). Once antecedents and consequences (outcomes) are understood, treatment teams can create a function-based behavior intervention plan (BIP) that will (21:00):

1. Prevent CB by changing the circumstances that trigger behaviors
2. Teach appropriate replacement skills that allow individuals to get what they need
3. Respond to CB by changing consequences to no longer reinforce those behaviors

The presenter refers viewers to her previous webinars for information on prevention strategies and notes a variety of skills that can serve as alternative behaviors (23:10). Moskowitz stresses teaching skill sets that match the function and outcome of the CB specific to each individual (24:10). She provides examples of replacement skills that can be taught when the function of a behavior is to gain attention (25:36), to escape/avoid disliked or strenuous activities (27:54), to obtain a tangible item/activity (29:27), and to obtain sensory stimulation (30:12). Selected replacement skills should be something the individual is capable of learning and executing on their own. They must serve the same function and work as well or better than the CB (32:03). 

Moskowitz asserts that replacement strategies must be taught with prevention interventions and learned in situations that provoke the CB. It is best to practice new skills in contrived conditions before prompting them in naturally occurring situations (32:40). To ensure continued use of communication skills, the presenter explains that the new behaviors must be easier to perform than the CB and the consequence of the replacement skill should be more reinforcing than that of the CB. Replacement behaviors should also be responded to immediately and consistently, or an individual may revert to the CB (34:17). Moskowitz discusses when to teach replacement communication techniques and emphasizes that new skills can only be learned during teachable moments before escalation or after recovery (37:03). The presenter stresses that after the communication skill is well-established, individuals must learn to tolerate delay in responses/reinforcement so they can eventually use the technique independently (50:23). Moskowitz provides an in-depth case example of FCT broken down into seven steps: 

1. Assess the function of CB (38:34)
2. Select mode of communication (40:55))
3. Arrange the environment to create teaching opportunities (42:40)
4. Prompt communication (43:44)
5. Fade prompts (46:00)
6. Teach new forms of communication and expand settings where requests are made (47:33)
7. Modify the environment (48:25)

Before the question and answer session (56:20), Dr. Stephen Edelson, Executive Director at ARI, notes ARI’s free online screening tool (ATEC) as well as the development of an online program to help provide insight into various behaviors via a decision tree about causes and functions of CB (53:12). 

View Dr. Moskowitz’s past talks on:

• Assessing and Treating Challenging Behaviors
• Anxiety and ASD
• Self-injury and ASD

Also Featured: Resources

Read Dr. Edelson’s editorial HERE

Moira Peña, BScOT, MOT, OT, Reg. (Ont.), answers questions about sensory strategies for home. This recorded live question and answer session was a follow-up to our two-part series on brain and sensory processing differences and sensory strategies for home.  

Handouts for this webinar are online HERE
Learn more about our speaker, Moira Peña, BScOT, MOT, OT, Reg. (Ont.), HERE
Take the knowledge quiz for this webinar HERE

Please note: This previously recorded Q & A session is not intended to diagnose or treat any medical conditions and should not replace a personal consultation, as appropriate, with a qualified healthcare professional.

In this webinar: 

1:38 – Sensory processing in autism
3:15 – Explaining sensory differences to family members
8:00 – Sensory diets and self-regulation
11:06 – Sensory schedules and ARFID
14:10 – No age limit for sensory tools
18:25 – Vocalization stereotype
24:15 – Aggression, SIB and context
26:06 – Environmental contexts
30:00 – Vocal stimming is enjoyable
38:50 – Behavioral changes, time, and data
41:58 – Visual stimming advice and options for sensory diets
48:00 – Neurodiversity acceptance in Latin America
51:30 – Weighted blankets
53:25 – Masking behaviors across a lifetime
56:55 – Difficult conversations with friends
1:00:13 – Sensory kits
1:01:44 – Psychomotor practices and non-pharmacological interventions
1:06:25 – Breaking down context
1:13:17 – What causes sensory issues in autism
1:15:00 – Adult diagnosis

Peña discusses the frequency of sensory processing differences in individuals with autism (1:38). She emphasizes the need to ask autistic people about their lived experiences to understand how we can assist them best (2:00) and provides ideas for explaining sensory processing differences to family members (3:15). Peña reminds listeners that sensory strategies are not about “fixing a person” (33:57) and underscores the importance of creating safe, non-stressful sensory environments that are conducive to an individual’s needs (8:00).  

The speaker details how personalized sensory diets can remediate interconnected symptoms and provides sensory support suggestions for Avoidant Resistant Food Intake Disorder (ARFID) (11:06). Peña notes that there is no age limit for sensory tools as they are modes of self-regulation and often help individuals complete daily activities (14:10). She discusses vocalization stereotypy and stresses that controlling a behavior is not the goal (18:25). The presenter urges listeners to move away from the idea of “high and low functioning” and to focus instead on what an individual’s needs are (25:00). Throughout the Q&A, she re-emphasizes the necessity of understanding individuals within their current sensory environments and identifying triggers and solutions for disruptive behaviors (31:00). 

Peña notes the value of speech-language pathologists and other specialists in diagnosis and treatment planning (27:40). She encourages viewers to be curious about treatments and sensory strategies (29:00), noting that we need to “embrace individual differences and expect complexity” (30:24). Peña encourages active data collection and assessment when making decisions about behavioral supports that work or don’t work, noting that even failed ideas are productive (38:50). She provides ideas for creating sensory environments conducive to multiple sensory profiles (37:00; 54:45) and discusses masking in individuals with autism (53:25). 

The presenter reviews visual stimming and states that stopping stim behaviors causes huge amounts of distress. She encourages individuals to intentionally integrate stimming into daily schedules and look for triggers in different environments (42:58). Peña touches on neurodiversity acceptance and understanding in Latin America (48:42) and provides support ideas for young children forced to sit for five hours or more (50:40). She outlines weighted blankets and their use in anxiety. However, she cautions listeners against using these with individuals with motor differences (e.g., epilepsy) (51:30). 

Peña gives advice on navigating conversations about sensory development and perception (56:55), highlighting the importance of positive assumptions and noting that people will act when they are ready (59:10). She describes sensory kits (1:00:13) and discusses psychomotor practices and other non-pharmacological interventions for self-regulation (1:01:44). The speaker suggests discovering what individuals enjoy about certain activities and how to make those behaviors more socially accepted or create scheduled times for them at home (1:06:25 – 1:10:56). 

Peña directs listeners to Part 1 of this series for information on neurobiological causes of sensory difficulties (1:13:17). Throughout the presentation, she reminds viewers that diagnosis and sensory strategy creation take time and can be difficult. She emphasizes that every step forward is a victory that should be celebrated (36:40).

Resources mentioned during the session include:

On Vocal Stimming:

• Stimming and Autism: Parents’ Guide to Snorting
• LOMAH  Disability Podcast: Vocal and Verbal Stimming
• Sensory Processing Differences Toolkit – Aide Canada

On our current understanding of the neurobiology of autism:

• ▪Ameis, Stephanie H., et al. “A diffusion tensor imaging study in children with ADHD, autism spectrum disorder, OCD, and matched controls: distinct and non-distinct white matter disruption and dimensional brain-behavior relationships.” American Journal of Psychiatry 173.12 (2016): 1213-1222.
• Aide Canada interview with Dr. Evdokia Anagnostou 

Dr. Moskowitz discusses coping with anxiety related to COVID. She briefly overviews anxiety and how cognitive behavioral therapy (CBT) can be used to treat it. The speaker outlines five major aspects of CBT and how they can be modified for autism. Moskowitz reiterates the importance of understanding anxiety instead of fearing it. During the live Q&A, she discusses how to talk to kids about COVID anxieties and provides tips for tackling medical phobias and readjusting after COVID. 

Handouts are online HERE
Take the knowledge quiz for this presentation HERE

In this webinar: 

3:50 – What is anxiety?
6:15 – Introduction to cognitive behavioral therapy (CBT)
7:00 – How CBT treats anxiety
8:50 – Psychoeducation
12:15 – Cognitive restructuring
15:05 – Gradual exposure
17:45 – Positive reinforcement
18:46 – Relaxation
19:55 – CBT modified for autism
24:55 – Gradual exposure modified for autism
27:35 – Positive behavior support
31:20 – Live Q&A and resource page
33:14 – Talking to kids about anxiety
38:45 – Differentiating between autism and anxiety
46:55 – Phobias of medical care
49:10 – Functional communication training
54:00 – How to transition out of COVID

Anxiety and cognitive behavioral therapy

Moskowitz explains that anxiety is constructed of three parts: thoughts, behaviors, and physical feelings (3:50). She outlines cognitive behavioral therapy (CBT), which is based on the notion that these three aspects all interact with one another (5:20). CBT is the most effective treatment for anxiety in the neurotypical population, and there is mounting evidence supporting its use with some autistic individuals (7:00). The speaker outlines main components of CBT and how they can be modified for autistic individuals: 

Psychoeducation

Psychoeducation focuses on educating people about the nature of anxiety. They specifically discuss the definition of anxiety, how it is a normal part of life with a specific purpose, and that anxiety only becomes an issue when one cannot cope (8:50). Moskowitz underscores externalizing anxiety or helping someone see that anxiety is separate from themselves. Psychoeducation also explains the three main components of anxiety and what treatments aim to accomplish (11:40). 

Cognitive restructuring

This technique identifies anxious thoughts and how to dispute or challenge them. Moskowitz suggests walking through the likelihood of the anxious thoughts happening and how they would be able to manage in the worst-case scenario (12:15). For smaller children, the same can be achieved using simplified language and “boss back talk” toward externalized anxiety (13:50). It is essential to focus on what they can do. Moskowitz notes that psychoeducation and cognitive restructuring are not crucial parts of CBT and that non-verbal individuals or people with lower cognitive function can still participate in CBT (14:42). 

Gradual exposure

Moskowitz explains that gradual exposure, or facing fears a little at a time, is the main ingredient in treating anxiety. From this, people learn that feared consequences do not come true, that anxiety isn’t dangerous, and that it’s something you can get used to (15:05). The speaker underscores that the fear of fear is often more anxiety-inducing than a phobia itself. It is, therefore, important to teach that anxiety is not dangerous and that they will get through it (16:40). The fear ladder guides the gradual confrontation of anxiety-provoking situations from easiest to hardest (17:10). 

Positive reinforcement

Positive reinforcement is critical to any treatment with any person. It’s the idea of rewarding someone for doing something hard for them. Reinforcements can be social, tangible, or activity-based. The speaker emphasizes reinforcing partial successes when someone attempts a difficult task (17:45). 

Relaxation

The presenter explains that relaxation is not the most important part of treating anxiety but can significantly help. The main lesson is that anxiety is not harmful and that the feelings can be managed. Moskowitz cautions against letting relaxation become a crutch in handling anxiety (18:46). 

Modifications to CBT for autistic individuals 

The most significant difference in CBT modified for autism is incorporating special interests. These interests work better with autistic patients because their love of the special interests can supersede anxiety and fear (21:10). Other differences include increased structure and predictability, extra modules for difficulties specific to autism, increased focus on generalization, and increased parental involvement (19:55). Moskowitz provides examples of visual teaching strategies that match an individual’s developmental level as they are used in cognitive restructuring and psychoeducation (22:11). For autistic people with low cognitive ability, pairing anxiety-provoking stimuli with highly positive stimuli often helps with overcoming anxiety (26:00). The speaker gives various examples of modified CBT treatments. 

Positive behavior support prevention strategies

The presenter discusses positive behavior supports like increasing predictability and providing choices. These offer individuals more control of their own situations, and so help with anxiety (27:35). She highlights video priming as a great way to increase predictability and provides examples for each support (30:15). 

Live Q&A

Moskowitz discusses what to do if your child’s fear of being exposed to COVID increases as they learn more information. She suggests being honest with the kids and giving them age-appropriate information so they have some idea about what is going on (33:14). If kids are asking the same anxiety-related questions over long periods, the speaker suggests setting a specific time of day to discuss those topics (35:10). She considers how to differentiate between repetitive behaviors/questions that are part of autism and those that are rooted in anxiety (38:45). For example, if the questions are a function of wanting social interaction, setting one time per day to talk about that topic wouldn’t be the correct treatment (40:40). The speaker notes that kids should be “earning points” or receiving positive reinforcement for not asking repetitive questions as well (43:10). 

Moskowitz provides helpful tips for medical phobias like increasing predictability and offering choices (46:55). She notes that functional communication training is critical in teaching kids how to ask for a break and that they can ask (49:10). When pairing positive stimuli doesn’t help, Moskowitz suggests thinking more about what the most powerful thing would be – perhaps an interest that was so intrusive it was previously removed (51:08). 

Transitioning out of pandemic life will be difficult for everyone. Research shows that after massive natural disasters, most people readjust (56:24). However, gradual readjustment and transitions generally see the best results. Therefore, she suggests that changes to pandemic routines be done slowly. She advises moving bedtimes up ten minutes daily or minimizing video game playing similarly (57:53).