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Autism and Trauma: The Intersection
Stephanie Monaghan Blout, PsyD and Nancy Roosa, PsyD NESCA: Neuropsychology and Education Services for Children and Adolescents 55 Chapel St, Newton MA
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Welcome! We are: One Trauma Specialist: Stephanie Monaghan Blout, Psy.D. and One Autism Specialist: Nancy Roosa, Psy.D. We work across the hall from each other and increasingly, our specialties collide.
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“So, Stef, can trauma cause autism?”
Recent Case Nancy wanders over to Stephanie’s office. 7 year old boy. Reportedly traumatized in 1st grade. Becomes afraid of school, regression in skills, hitting himself in head No prior diagnosis of Autism. Presents now as classic and severe autism. “So, Stef, can trauma cause autism?”
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Autism Spectrum: Diagnosis, Part A
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text): 1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions. 2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication. 3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers. Specify current severity: Severity is based on social communication impairments and restricted repetitive patterns of behavior. (See table below.)
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Autism Spectrum Diagnosis, Part B
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text): 1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases). 2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day). 3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest). 4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
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History matters Important to get a good history.
I got sources of information from preschool year. School reports Early evaluations Home videos
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Trauma exacerbates Autism
Evidence from preschool… both things are true. He WAS more outgoing and talkative in preschool AND he did have some symptoms of ASD at that time. Presumed trauma increased the severity of his symptoms of autism.
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Trauma: A Historical Review
Concept of psychological trauma emerged from the impact of war and its terrors on the human psyche. The concept of “shell shock” from WWI was refined in the Vietnam war to Post-Traumatic Stress Disorder (PTSD) and was thought be quite rare DSM I – traumatic event defined as “outside the range of usual human experience” usually involving threat to life or bodily integrity. These are events that “overwhelm the ordinary adaptations to life”. Common denominator? “feelings of intense fear, helplessness, loss of control, and threat of annihilation (Herman, 1992, Trauma and Recovery) Presence of intrusive memories, hyperarousal, and/or numbing in context of traumatic experience
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What Constitutes Trauma? History
Women’s movement brought to light the occurrence of experiences that may or may not not be life-threatening but still induce terror, feelings of helplessness, and loss of control AND are very common; rape, physical, sexual, and emotional abuse. Investigation of children whose early development occurred in extreme, pervasive, and chronically unsafe, deprived, and/or abusive conditions revealed impairments across all domains- physical, cognitive, social, and emotional. These challenges were NOT captured by the PTSD diagnosis.
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What Constitutes Trauma
Witnessing domestic violence or community violence Abuse: physical, sexual, or psychological, especially that occurring within the context of relationship Neglect of physical, social, or emotional needs
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What Constitutes Trauma: Not So Simple
Neglect, abuse, and witnessing violence often co-occur Children are also exposed to secondary impacts such as maternal depression or physical injuries Some children are more vulnerable due to prenatal factors (exposure to neurotoxins, malnutrition, maternal stress
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Differential Impact of Trauma: Why Kids Are So Vulnerable
Developmental Vulnerability -Helplessness of young children: what is life-threatening to young children is not the same as for adults -Trauma to growing brains alters the trajectory of development
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Epigenetics Epigenetic” refers to any process that alters gene activity (“turning on “ or “turning off” genes) without changing the underlying DNA sequence. These changes are sometimes referred to as “mutations” Some of these mutations will be “reset” in the next generation, but some continue to influence gene expression for several generations
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Epigenetics Epigenetic effects may occur anytime throughout the life span, from within the womb to old age and Epigenetic influences include what you eat, how you sleep, who you interact with and if you exercise. They also include environmental factors such as the quality of the air you breathe and how safe you feel in your home and in your community. The exciting element of the new research on epigenetics involves the possibility that lifestyle factors can reverse or mitigate the negative elements of gene mutations. We are just at the beginning of these investigations.
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Two Key Factors Mitigating Impact of Trauma
Resiliency related to: Psychosocial support, including the caregiver’s response to the traumatized child but also the community (ecological fit). Child’s sense of mastery
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The Stress Response This Photo by Unknown Author is licensed under CC BY-SA
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The Stress Response The Body’s Alarm System- Enable us to gear up to respond to threat Response- The Hypothalamic-Pituitary- Adrenal Circuit (HPA)
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As the brain recognizes a threat, the hypothalamus releases corticotropin-releasing hormone (CRH) which stimulate the pituitary gland to release Adrenocorticotropin (ACTH) which then prompt the adrenal glands to release a number of other hormones . These hormones “switch on” systems need to respond to threat; “switch off” nonessential systems; release sugar for energy. When the danger has passed, Cortisol exerts a feedback loop to shut down production of ACTH by hypothalamus
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Impact of Hormones Switch on systems needed to respond to threat- sympathetic nervous system (Fight or Flight) Switch off systems not essential to crisis response – parasympathetic nervous system (Rest and Digest)- included digestive system, reproductive hormones, growth hormones Stimulates the release of sugar (glucose) to power muscles and brain to respond to the danger (Cortisol) Once danger is passed, Cortisol exerts a feedback loop to shut the production of CRH by the hypothalamus.
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Chronic Exposure to Stress: What if the Loop doesn’t shut down?
Significant, ongoing stress in early childhood can cause the HPA feedback loop to become stronger, and with each reiteration, the loop becomes stronger, leading to a very sensitive stress response. Which this hypervigilance may be adaptive in highly dangerous environments, the “life or death” response to minor irritants results in adjustment problems in other settings
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Impact of Trauma Chronic “Fight/Flight/Freeze?
Cognitive resources mobilized for protection from danger Attentional system is geared to be on the lookout for signs of danger (triggers) Arousal “set-points” are fixed (too much, too little) Distorts perceptions of people and events Drastically limits capacity for flexible thinking and creative problem solving Creates conditions of physical discomfort
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Variable Response to Stress
Individual Variations- Genes and temperament can contribute to under or over response to threat. Example- shy children Environmental Contributions- Exposure to extreme and/or chronic stress during any part of life cycle, including prenatally and especially in early childhood before the brain is fully developed, can alter the functioning of the stress response. Example –traumatized children
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Trauma-and-Stressor-Related Disorders
DSM-5: “Disorders in which exposure to a traumatic or stressful event is listed explicitly as a diagnostic criterion. Spectrum of impact: only 10-30% of people exposed to a single trauma develop symptoms of PTSD (remember vulnerability and protective factors) However, there are developmental periods in which individuals are extraordinarily vulnerable to injury (remember growing brains) Each “hit” increases the probability of psychological as well as physical difficulties McCullough and Ressler stats
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Adverse Childhood Experiences ACE Study
Centers for Disease Control and Prevention. Publications by health outcome: Adverse childhood experiences (ACE) study. Atlanta, GA: Centers for Disease Control and Prevention; 2012. [Reference list]
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Most Traumatized Children Don’t Meet Criteria for PTSD
Impact of Trauma NESCA 9/8/16 Most Traumatized Children Don’t Meet Criteria for PTSD Child and Adolescent Needs and Strengths (CANS) data set screened 7,668 foster children in Illinois DCFS custody (removed from home): 44% exposed to sexual or physical abuse, or domestic violence 49% were neglected 16% experienced emotional abuse 63% exhibited trauma-related symptoms Only 5% of children with trauma symptoms had both re-experiencing and avoidance, necessary to meet PTSD criteria 95% of the children identified as having clinically significant trauma-related symptoms did not qualify for a diagnosis of PTSD These criteria for PTSD include exposure to a traumatic incident, accompanied by intrusive symptoms, avoidance of stimuli associated with the event, negative alterations in cognition and mood, and alterations of mood and cognition
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Developmental Trauma Disorder
A diagnosis proposed by Bessel Van der Kolk to capture the most salient symptoms seen in children exposed to complex trauma which occurs on a chronic basis and may include all forms of trauma (interpersonal, physical, and environmental) DTD was not included in DSM-V Similar formulation include Complex Trauma Very poor countries
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DTD Symptoms Exposure to multiple or prolonged adverse events over a period of at least one year beginning in childhood or early adolescence Affective and Physiological Dysregulation Attentional and Behavioral Dysregulation, impaired development of sustained attention, learning, or coping with stress, Self and Relational Dysregulation, impaired normative development of sense of personal identity and involvement in relationships Functional Impairment: Scholastic, Familial and/or Peer . Inability to modulate, tolerate, or recover from extreme affect states (e.g., fear, anger, shame), including prolonged and extreme tantrums, or immobilization B. 3. Diminished awareness/dissociation of sensations, emotions and bodily states B. 4. Impaired capacity to describe emotions or bodily states B. 2. Disturbances in regulation in bodily functions (e.g. persistent disturbances in sleeping, eating, and elimination; over-reactivity or under-reactivity to touch and sounds; disorganization during routine transitions) C. 2. Impaired capacity for self-protection, including extreme risk-taking or thrill-seeking C. 1. Preoccupation with threat, or impaired capacity to perceive threat, including misreading of safety and danger cues C. 5. Inability to initiate or sustain goal-directed behavior C. 4. Habitual (intentional or automatic) or reactive self-harm C. 3. Maladaptive attempts at self-soothing (e.g., rocking and other rhythmical movements, compulsive masturbation) . 1. Intense preoccupation with safety of the caregiver or other loved ones or difficulty tolerating reunion with them after separation D. 2. Persistent negative sense of self, including self-loathing, helplessness, worthlessness, ineffectiveness, or defectiveness D. 3. Extreme and persistent distrust, defiance or lack of reciprocal behavior in close relationships with adults or peers D. 4. Reactive physical or verbal aggression toward peers, caregivers, or other adults D. 5. Inappropriate (excessive or promiscuous) attempts to get intimate contact (including but not limited to sexual or physical intimacy) or excessive reliance on peers or adults for safety and reassurance D. 6. Impaired capacity to regulate empathic arousal as evidenced by lack of empathy for, or intolerance of, expressions of distress of others, or excessive responsiveness to the distress of others
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Impact of Trauma; Behavioral Presentation
Attention and EF problems (can look like ADHD) Diminished Language Competency Behavioral Dysregulation Anxiety, Depression, Self-Injurious Behaviors Learning Issues Weak Social Skills Substance Abuse
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Many of the Systems/Processes Important in Emotional Function Also Play a Role in Learning and Memory Hippocampus- converting information from short to long term memory Amygdala- conditioned fear response Hypothalamus – controls the autonomic nervous system (visceral states) Prefrontal cortex- attention and executive function, including self-awareness
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Apply Trauma Lens to Autism
This 7 year old started life with an emerging Autism spectrum disorder. Trauma exacerbated the behavioral and learning problems he already had. Post-trauma: he looks MORE Autistic. This intersection of Autism and Trauma is more common than we recognize.
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Autism increases risk of trauma
Bullying from peers Parents who don’t understand their child Negating messages from teachers, society, professional treaters Harsh discipline to manage behaviors
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Sometimes things we don’t expect to be traumatic… ARE
Experiences known to be distressing for people with ASD include: Unexpected schedule changes Not being allowed to engage in repetitive or preferred behaviors Sensory sensitivities: loud classrooms, birthday party at Chuckie Cheese, dressy clothes, shampooing. A visit to the doctor’s office Emphasis on fitting in and masking your true self. All could be perceived as traumatic particularly when such distress occurs on a regular basis. Kerns et al. 2015.
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Children with autism experience more trauma
People with autism have a higher risk of adverse childhood experiences, such as financial hardship, mental illness or substance abuse in their families or parent separation or divorce. A diagnosis of ASD is significantly associated with a higher probability of one or more ACEs. The number of children with ASD who were exposed to four or more ACEs was twice as high as neurotypical peers. Berg et al. (2016)
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Autistic individuals have vulnerable physiology
Hyperarousal of the HPA axis occurs in response to common social interactions, novel situations, and unpleasant or painful stimuli. Many persons with ASD exhibit marked stress responses in otherwise benign social situations. The hyper-responsivity may contribute to increased anxiety or even chronic stress. Children with ASD may not only experience more stress than neurotypical children in response to certain situations, but their body’s stress response may be longer lasting. Taylor and Corbett (2014)
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Hard to distinguish symptoms of autism from trauma: Social Relationships
Withdrawal/lack of eye contact, no social initiation, no interest in social interaction Due to withdrawal after trauma or the inherent social deficits of ASD? Difficulty maintaining social relationships Due to mistrust and negative filters after a trauma or inherent social deficits of ASD?
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Hard to distinguish symptoms of autism from trauma: Emotions
Difficulty identifying, labeling and managing emotions Due to deficits in emotional literacy common to ASD or difficulty feeling safe enough to talk about a trauma? Emotional over-reactivity, tantrums, meltdowns. PTSD or ASD?
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Hard to distinguish symptoms of autism from trauma: Behaviors
Hypersensitivity to sensory stimuli Due to hypervigilance due to memories of trauma or sensory dysregulation of ASD? Difficulties with change, stuck in routines, trying to control unpredictability Anxious response to trauma or ASD? Perseverative thinking Anxious rumination of a depressed or distressed individual or perseverative thinking of ASD?
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Profile of ASD exacerbates the trauma experience
Rigid thinking. Things will never change or get better Inability to process experience emotionally Difficulty getting emotional support from others
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AND, Trauma exacerbates ASD symptoms
Exacerbates symptoms of autism. Less trust in others, more social withdrawal Less interest in social relationships that may be unsafe More obsessive thinking, more perseverative behaviors, in an attempt to self soothe.
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Trauma is often overlooked
Given the overlap, Trauma is often overlooked in ASD. We often overlook trauma-based behaviors because we see them as another manifestation of autism. The Autistic individual often can’t explain it. Important: if we see regression, ask if there was any unusual recent stress or trauma
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Situation is worse for Adults
Most adults today grew up before Autism was known or diagnosed. Most adults today grew up when the effects of trauma were not known Have lived with years of traumatic experiences due to lack of understanding and treatment
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Diagnosis depends on where you live
More likely to get diagnosed with ASD if you live in certain states.
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Diagnosis/treatment depends on your SES
Less likely to get diagnosed if you are a minority or poor. African American children get diagnosed 1.5 years later on average than whites. Sarabeth Broder-Fingert, MD, Autism Conference 2018 Less able to access treatment in our fragmented health care system unless you have resources: financial and personal
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Situation is worse for minorities
More psychosocial stressors Poverty More likely to experience or witness violence Trauma induced by racist society Less access to health care and treatment Some minority cultures have stigma around psychological difficulties and shun treatment
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Differential diagnosis
Was there an identifiable trauma or stressor? Has there been a consistent pattern of stressors enough to count as trauma? Even when the trauma may seem subclinical, it’s important to recognize the possible damage. Children with ASD can be easily traumatized. Try to minimize social rejection, subpar parenting, stressful educational environments so as to improve functioning
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Recommendations for Treatment
Not just ABA! Anxious child first needs to feel safe. Learning, attention, behavior depend on emotional regulation Need to have consistency, reliability, predictability in the environment. Needs to build helping relationships. Children with ASD don’t always need the same quality or quantity of relationships, but all individuals with ASD need relationships. Connect with one adult at a time. Only if s/he feels connected and safe will s/he be able to learn.
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Our fields are not so far apart after all !
Sounds Familiar ? Kinda Very similar to recommendations we would make for treating traumatized children Our fields are not so far apart after all !
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National Child Traumatic Stress Network Complex Trauma Task Force
ARC model: Building secure Attachments between child and caregivers Enhancing Self-Regulatory capacities Increasing Competencies across multiple domains
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Keys to Developing Effective Strategies in the School Setting
Knowledge of Child’s learning profile (Attention/Learning/Social Challenges?) Sensitivity to Child’s temperamental style (is this a fight, flight or freeze kind of kid?) Direct Approach to Stress response (“Don’t worry” isn’t going to help. Validation and modifications can make a huge difference) Remember that when these children are triggered, they go into survival mode and do not have access to many of their higher level skills, including language. Learning to identify their emotional state and self-advocate should be goals, not expectations. Teach skills that are lacking (e.g. phonological processing AND breaking down a problem AND self-soothing)
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Ecological Fit “The quality and helpfulness of the relationship existing between the individual and his/her social context” “Interventions that achieve ecological fit are those that enhance the environment-person relationships- i.e. those that reduce isolation, foster social competence, support positive coping, and promote belongingness in relevant social contexts” Harvey 2007
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Ecological Fit “Even highly effective interventions will rely for lasting impact in their becoming embedded in and familiar to more enduring social settings and community contexts. Attention to the possibilities for ensuring lasting impact and enduring change are important features of intervention design and conduct” (Harvey 2007).
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Ecological Fit- Cambridge Schools
Social Emotional Learning (SEL) in Cambridge Schools is the process by which children and adults develop the skills and competencies that, in a developmentally appropriate way, increase the skills of self-regulation, relationship skills, decision-making and planning. Our definition: SEL is knowledge, attitudes, and skills to understand and manage emotions, achieve goals and show empathy in order to maintain positive relationships and make responsible decisions
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Ecological Fit –Cambridge Schools
. Elementary Schools: Health Education Curriculum, Responsive Classroom morning meetings. Upper Campuses: Developmental Designs Advisory Alice Cohen, MSW , Lead Teacher for Social Emotional Learning
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Trauma Sensitive Schools Initiative
Massachusetts Advocated for Children and Harvard Law School Joint Project- Trauma Learning Policy Initiative (TLPI) First Publication: Helping Traumatized Children Learn: A report and Policy Agenda (the Purple Book) 2005 Second Publication: Helping Traumatized Children Learn; Creating and Advocating for Trauma-Sensitive Schools
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TLPI Trauma-Sensitive Schools
“A School’s Journey Toward Trauma Sensitivity” The George Elementary School, Brockton new-video/
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Final Thoughts Provide autism friendly environments
Celebrate Autistic individuals for who they are. Not just tolerating Focus on strengths not deficits Provide autism friendly environments Protect against sensory overload. Respect compensatory strategies; Allow preferred activities Social acceptance of difference
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Stay in Touch! Stephanie Monaghan Blout, Psy.D. Nancy Roosa, PsyD.
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References Berg KL, Shiu CS, Acharya K, Stolbach BC, Msall ME. Disparities in adversity among children with autism spectrum disorder: A population based study. Developmental Medicine & Child Neurology. 2016;58:1124–1131. Fuld, S. Autism Spectrum Disorder: The Impact of Stressful and Traumatic Life Events and Implications for Clinical Practice. Clin Soc Work J. 2018; 46(3): 210–219 Gregory M,, Nichols E . From the outside in: Using a whole-school paradigm to improve the educational success of students with trauma histories and/or neurodevelopmental disabilities. From Fogler & Phelps (eds) Trauma, Autism, and Neurodevelopmental Disorders: Integrating Research, Practice, and Policy. Springer Nature Switzerland 2018 Harvey, M., Towards an ecological understanding of resilience in trauma survivors; Implications for Theory, research, and practice. Harvery &Tummala- Nara (eds) Sources and Expressions of Resilience in Trauma Surivors: Ecological Theory, Multicultural Practice. Journal of Aggression, Maltreatment, and Trauma 2007, 14 (1) Kerns CM, Newschaffer CJ, Berkowitz SJ. Traumatic childhood events and autism spectrum disorder. Journal of Autism and Developmental Disorders. 2015;45(11):3475–3486. Saunders B, Adams, Z . Epidemiology of traumtic experiences in childhood. Child and Adolescent Psychiatric Clinics of North America April: 23(2) Sivaratnam CS, Newman LK, Tonge BJ, Rinehart NJ. Attachment and emotion processing in children with autism spectrum disorders: Neurobiological, neuroendocrine, and neurocognitive considerations. Review Journal of Autism and Developmental Disorders. 2015;2(2):222–242. Taylor JL, Gotham KO. Cumulative life events, traumatic experiences, and psychiatric symptomatology in transition-aged youth with autism spectrum disorder. Journal of Neurodevelopmental Disorders. 2016;8(1):28.
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