WAO - Autism Research Institute https://autism.org/category/wao/ Advancing Autism Research and Education Wed, 10 Apr 2024 23:23:39 +0000 en-US hourly 1 https://wordpress.org/?v=6.5.3 Autism & Aging – Cognition and Well-being https://autism.org/aging-cognition-wellbeing/ Tue, 09 Apr 2024 18:53:35 +0000 https://autism.org/?p=17829 When we become older, we all hope to become wiser and happier, but we also know that someday we will decline. This decline is apparent in both cognition and health. This is true for everyone, although large individual differences exist in when and how fast one declines. Whether or

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When we become older, we all hope to become wiser and happier, but we also know that someday we will decline. This decline is apparent in both cognition and health. This is true for everyone, although large individual differences exist in when and how fast one declines. Whether or not being autistic impacts the when and how of this decline is the central question that will be addressed in the current talk. You will learn that the findings are mixed and the literature is still scarce. However, in general the future outlook seems highly similar for autistic and non-autistic people even though autistic people do seem to have an increased risk for specific health related conditions. I will touch upon topics such as menopause, camouflaging, and feelings of being in control as these are all relevant factors for one’s well-being.

This is a joint presentation by ARI and The World Autism Organisation.

The speaker:

Hilde Geurts, Ph.D., is currently a professor in clinical neuropsychology and head of the section Brain & Cogntion at the Department of Psychology of the University of Amsterdam. Dr. Geurts studies autism and ADHD. Her starting point is the neurodiversity perspective, and she focuses on cognition (especially cognitive control/executive functioning), inter & intra individual variability, quality of life as well as interventions across the life span.

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From Special to H.A.P.P.Y. https://autism.org/from-special-to-happy/ Tue, 12 Dec 2023 12:01:07 +0000 https://kaput-rooftop.flywheelsites.com/?p=17118 Peter Vermeulen, Ph.D., considers a positive approach to psychoeducation for autistic individuals. He draws on over 25 years of experience to illustrate contemporary changes in autism intervention focus and discourse. The speaker outlines critical characteristics of autism psychoeducation and underscores the need to create measurements and questionnaires based on well-being and happiness.

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Peter Vermeulen, Ph.D., considers a positive approach to psychoeducation for autistic individuals. He draws on over 25 years of experience to illustrate contemporary changes in autism intervention focus and discourse. The speaker outlines critical characteristics of autism psychoeducation and underscores the need to create measurements and questionnaires based on well-being and happiness. He outlines a new psychoeducation program for autism, focusing on skill development, self-understanding, and quality of life. Vermeulen outlines critical understandings to inform positive psychoeducation before the Q&A session. 

Printable handouts (.pdf) are online HERE

This is a joint presentation by ARI and the World Autism Organisation.

In this webinar

0:00 – 6:20 – Introductions
6:40 – Psychoeducation and autism
9:27 – Self-knowledge in autism
12:00 – Shifting the focus of psychoeducation
14:50 – Pychoeducation must be meaningful and functional
18:15 – Pychoeducation must be positive
20:15 – Psychoeducation must be fun and interactive
23:28 – Pschoeducation must put autism into context
28:25 – Psychoeducation must focus on wellbeing
35:30 – Four pillars of psychoeducation for autism
39:00 – H.A.P.P.Y.
41:50 – Q&A

Introduction

Vermeulen defines psychoeducation as the “practice of explaining a diagnosis to people who have the diagnosis” and notes that this is a relatively new area of study within autism (6:40). He draws on past experiences to illustrate how the focus of psychoeducation has shifted over the last quarter century, highlighting that it is autistic people themselves who are entitled to learn about autism first (7:35). The speaker cites a study which found that autistic children “know” they are different and have some notion of what their differences and difficulties are. However, he continues, many have difficulty understanding and developing a nuanced and coherent concept of self (10:34). Vermeulen emphasizes the empowering potential of well-constructed psychoeducation. 

Characteristics of psychoeducation

The presenter describes his first published interactive psychoeducation program for autism, entitled, I Am Special (12:00). In the 25 years since its publication, Vermeulen continues, he realized that the focus of autism psychoeducation needed to shift from a clinical explanation and deficit-centered language to include information that autistic people actually need in a way that is easy for them to understand and empowers them to know themselves (13:55). He discusses four critical aspects of successful autism psychoeducation: 

Make it meaningful and functional

The word functional, in this sense, means that a given program is administered in a way that participants can relate to the information and, therefore, apply it to their lives almost immediately (14:50). He underscores that abstract and general information does not teach coping skills and that we must use language that reinforces self-understanding and builds navigating/coping skills (16:00). He provides this example: 

Instead of: You have difficulty with these kinds of situations.

We say: These kinds of situations can be difficult for you because of the sensory environment and… These are some things you can try that may help with …”

Make it positive

Vermeulen asserts the need to do away with the deficit perspective/discourse and focus on the positive aspects of autism. Individuals need to understand the benefits of their differences and their strengths. There are several positive autistic role models in the media. However, he continues, referring to things an individual can realistically achieve is also essential. Most people aren’t geniuses, so personal goals should be attainable – make it positive, but be honest (18:15)

Make it fun and interactive

The presenter states that activities in autism psychoeducation programs should be interactive and encourage participants to do something. In his first publication, I Am Special, the activities were simple worksheets like those children receive in school, which can be boring and tedious (20:15). Vermeulen asserts the benefits of including activities that involve the surrounding environments. For example, he continues, have someone trace their body on a large piece of paper and then measure the lengths of each part (22:14).

Put autism into context

Vermeulen reminds viewers that autism is not the only title autistic people wear; it is not their sole defining characteristic. He urges families and practitioners not to make autism bigger than it is. This diagnosis is only part of each person, and psychoeducation programs must be sure to put this in context (23:28). The speaker recounts an interaction with someone who hated the I Am Special course because he didn’t want to be special; he wanted to be just like everyone else (25:00)

Focus on wellbeing

He touches on the concept of neuroharmony and the need to focus on our commonalities instead of our differences (26:15). Maslow’s Hierarchy of Needs says that we all have physiological needs and safety needs, we all want to belong, have self-esteem, and be fulfilled (30:00). Vermeulen asserts that in terms of behavior, mind, and necessities, no one person is so different from the next. 

A recent study on autism intervention goals found that most investigations used DSM-5 criteria or other behavioral characteristics as success measurements. Such measurements have no correlation with quality of life (QoL), age, IQ, or symptom severity (32:00). Another study found that parents and autistic children would like intervention goals to include things like happiness, self-esteem, and mental health management (33:00). The presenter asserts the need to develop questionnaires and intervention goals based on what makes autistic people happy, not about their difficulties or differences (34:30). He urges families and practitioners to shift focus from being “less autistic” to being “autistically happy.”

H.A.P.P.Y.

Vermeulen describes his most recent psychoeducation program as an autism-friendly plan for well-being. It encompasses the aspects outlined above and has adapted evidence-based well-being strategies for autistic individuals (35:30). Vermeulen has created four pillars to inform programs for happiness and well-being for autistic people (37:40):

  1. Happiness is within reach of all people with autism, regardless of the nature and profile of their autism, their intellectual abilities, and their age
  2. Evidence-based scientific findings should underpin a program for happiness and well-being
  3. A program for happiness and well-being should make evidence-based well-being interventions autism friendly
  4. A program should be individualized and should be what works for you

His new program, H.A.P.P.Y., uses ten evidence-based well-being strategies, including accepting and loving yourself, Good Feeling toolbox, flow activities, physical exercise, problem-focused and emotion-focused coping strategies, positive thinking, gratitude, kindness, and personal projects (learning something new) (39:00). Versions (online and physical) for children and young adults are available for individuals or groups. There is no fixed number of sessions. The speaker provides concrete examples for a Good Feeling Box and flow activities. He reiterates the need for psychoeducation programs to be more than a list of all the things an individual must do or learn (40:00). Vermeulen summarizes his presentation, underscoring the five critical aspects of psychoeducation (41:15) before the Q&A where he discusses how H.A.P.P.Y. could work for individuals with intellectual disabilities and seniors, how to find what autistic people prefer, and much more (41:50)

The speaker:

Peter Vermeulen, PhD, in Psychology and Clinical Educational Sciences, has more than 35 years of experience in the field of autism. Founder of “Autism in Context”, where autism is understood in context. Peter is an internationally respected lecturer/trainer and he presents all over the world. Peter wrote more than 15 books and several articles on autism, some of them translated into more than 10 languages. For his +30 years of work in the field of autism, he received in 2019 a Lifetime Achievement Award.

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Autism and Pica https://autism.org/autism-pica/ Tue, 11 Apr 2023 18:03:58 +0000 https://last-drum.flywheelsites.com/?p=15666 Dean Alexander, Ph.D., discusses pica, the ingestion of non-food substances, which has received insufficient attention as a common, sometimes lethal, form of self-injurious behavior. He discusses the prevalence of pica in autistic individuals and the long-term health implications associated with pica behavior. The speaker details numerous case studies and highlights the need

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Dean Alexander, Ph.D., discusses pica, the ingestion of non-food substances, which has received insufficient attention as a common, sometimes lethal, form of self-injurious behavior. He discusses the prevalence of pica in autistic individuals and the long-term health implications associated with pica behavior. The speaker details numerous case studies and highlights the need for multidisciplinary collaborative treatment strategies based on functional behavior assessments. Alexander describes available treatment strategies and presents the SMART acronym for treatment recommendations. e.

Handouts are available for download (PDF) HERE
Take the knowledge quiz for this presentation HERE

This is a joint presentation by ARI and the World Autism Organisation.

In this webinar: 

2:12 – What is pica
5:22 – Study: Soda can and rubber ball
8:00 – Challenges with behavioral treatments
13:00 – Sensory stimulation and pica
14:20 – Pica prevalence and impact
16:08 – Study: GI symptoms and pica
17:30 – Study: Autism, GI symptoms, and pica
19:00 – Study: Pica prevalence in autistic adults
25:25 – Pica as a phenotypic subgroup
26:30 – Studies: polyvisol, vivinex, iron supplements, zinc and antioxidant therapy
29:46 – Metabolic profiles and phenotypic subgroups
31:57 – Why nutritional interventions
34:04 – Comprehensive vitamin-mineral interventions
36:10 – Dietary changes
38:21 – Study: Homeopathic treatment
44:28 – SMART interventions

Pica and behavioral treatments

Pica is the ingestion of inedible substances and is the most dangerous form of self-injurious behavior associated with autism (2:12). Items frequently ingested include generally harmless things like dirt, leaves, and grass, as well as dangerous and potentially lethal items like rubber gloves, clothing tags, and screws (3:30). Alexander details a case study involving a 50-year-old autistic man who ingested cigarette butts. The presenter explains how treatment strategies capitalized on the individual’s preferences by incorporating soda cans and a red rubber ball into his walk to work. Over six months, the client’s nicotine and cotinine levels decreased from those of a chain smoker to zero (5:22). Alexander highlights the simplicity of this case, noting the trial and error implicit in creating holistic treatment strategies (6:43)

Establishing effective behavioral treatments for pica can be challenging due to costs, availability, environmental restrictions, and the generality of treatments across time (8:00). The presenter notes the importance of functional behavioral assessments, which help identify the factors that drive and maintain pica behavior, like attention-seeking, sensory issues, pain attenuation, or escape/avoidance (11:00). Sensory stimulation, he continues, is often a significant factor in maintaining pica behavior and can be challenging to address. Solutions to sensory drivers can include finding substitute foods with similar sensory properties (i.e., grape nuts in place of dirt) or engaging individuals with play during unstructured hours (13:00). The presenter notes that pain attenuation is often related to dental issues (14:01)

Pica Prevalence and Impact

Around 23.2% of autistic children and up to 60% of autistic adults experience pica (14:20). The speaker outlines two studies on the intersection of autism, pica, and GI issues in children (16:08). Researchers found that autistic children and children with developmental disorders who also have pica have a higher prevalence of GI signs, symptoms, and diseases compared to those without pica (15:24). Prevalence of food cravings and specific GI conditions like irritable bowel syndrome (IBS) and gastroesophageal reflux (GERD) are also higher in autistic children with pica than those without (17:30). To assess the prevalence and co-occurring conditions in adults, researchers examined ten years of medical records compared to a comprehensive list of symptoms and diseases (19:00). Four groups were assessed: autism only, autism and pica, pica without autism, and a control group of developmentally disabled individuals without pica. Findings revealed that the prevalence rates across the ten most frequently occurring diseases were two to three times higher for individuals with pica, where the autism and pica group had the highest rate (22:33). Alexander emphasizes that pica takes a severe toll on the body over time which can lead to shorter life expectancy and higher mortality rates. He asserts that autistic individuals with pica may represent a phenotypic subgroup characterized by GI symptoms and requiring specialized treatments (25:25)

Intervention Options

Alexander outlines research showing that autistic children have relatively less diversity in gut bacteria and generally have fewer healthy bacteria than unhealthy (30:55). These findings emphasize the importance of including nutritional interventions in treating pica. The speaker underscores that dietary interventions do not necessarily rely upon practitioner availability and so may be more accessible (27:36). He details promising research using iron supplements, liquid multivitamins (poly-vi-sol), specialized formulations (vivinex) (26:30), and zinc supplements and antioxidant therapy (28:42) to reduce pica behaviors like coprophagy (ingestion of feces) in autistic individuals. The presenter discusses a study that revealed significant differences in metabolic profiles between autistic children and their non-autistic peers (29:46). Targeted nutritional therapies, including folinic acid, betaine, and methyl B12, succeeded in correcting metabolic imbalances. Alexander asserts these findings suggest the presence of a metabolic phenotype and that aspects of autism are treatable. 

Maintaining a healthy gut is critical for the body’s ability to fight infection, digest food and produce vitamins (31:57). The presenter outlines other nutritional treatment approaches, including gluten-free, casein-free, and Mediterranean diets (37:17), as well as comprehensive vitamin-mineral interventions (34:04). Alexander details a case study where a seven-year-olds pica behaviors stopped just one week after implementing a gluten/casein free diet (36:10). The speaker summarizes the behavioral, dietary, and vitamin/mineral based interventions and highlights the need to try and assess each strategy. He outlines a homeopathic treatment study that showed remarkable improvements in a 15-year-old boy with severe autism. Supplemental behavioral interventions alongside homeopathic recommendations significantly improved the child’s functions, behavior, communication, and quality of life (38:21)

S.M.A.R.T. Interventions

Alexander highlights the need for collaborative treatment strategies and introduces the SMART acronym for treatment recommendations (44:28)

Safety: Safety precautions are critical. Potential dangers and treatment environments must be appropriately assessed based on individual needs.

Medical issues related to eating habits, food cravings, stomach pain, antibiotic use, and mouth sensitivities must be addressed. It is best to be assessed by a team of professionals including, but not limited to, a dentist, GI specialists, and nutritionist (45:33)

Analysis/assessments of behavior function and consequences are best practices. Such assessments are critical for accurately identifying drivers and potential treatments for pica behavior (47:40)

Reinforcement inventory or a “menu” of activities or objects that help minimize Pica behavior (e.g., soda cans and rubber balls). These can aid in implementing differential reinforcement strategies and finding alternatives. 

Treatment packages or a combination of various approaches to create a collaborative treatment strategy. Treatment packages include psychotherapy, pharmacological treatments, behavioral techniques, and nutritional support. Such holistic therapies are generally the most effective (49:44)

Dean Alexander, Ph.D., discusses pica, the ingestion of non-food substances, which has received insufficient attention as a common, sometimes lethal, form of self-injurious behavior. Behavioral approaches to treatment, more often than not, fall short. Biological intervention, if supported, may hold out new promise.

Handouts are available for download (PDF) HERE

This is a joint presentation by ARI and the World Autism Organisation.

About the speaker:

Dr. Dean Alexander has worked at centers for children with physical handicaps and emotional disturbances and adults with developmental disabilities (Lanterman Developmental Center) before entering Claremont Graduate University, Claremont, CA. At CGU, Dr. Alexander teamed up with Dr. Laura Schreibman, then worked on Dr. Ivar Lovaas’s landmark Young Autism Project; this led to a case study and a co-authorship of Dr. Lovaas’s first two books. Returning to LDC as a psychologist, he co-authored the first behavioral treatment of pica while gaining familiarity with nutritional and vitamin-driven approaches through literature and conferences presented by the Autism Research Institute.

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