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Pain and Autism: Clinical Traits, Sensory Perceptions, and Practice Tips Barbara L. Kornblau, JD, OTR/L, CPE Susan McNulty, OTD, OTR/L Scott Michael Robertson, BS, MHCI

Disclosures Kornblau – Nothing To Disclose McNulty – Nothing To Disclose Robertson – Nothing To Disclose

Learning Objectives  Identify 5 clinical traits of autism and the ways in which they may affect clinical practice  Explain 3 examples of how sensory perception experienced by autistic people may affect their interactions with clinicians  Describe 3 hands-on practice tips clinicians can incorporate into their practice to treat autistic people who experience pain

Pervasive Developmental Disorder (PDD) A Classification Of Disorders That Includes The Following Five Diagnoses: –Autism, –Rett syndrome, –Childhood disintegrative disorder, –Asperger Syndrome, and –Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)

The Autism Spectrum

Pervasive Developmental Disorder (PDD) A Classification Of Disorders That Includes The Following Five Diagnoses: –Autism, –Rett syndrome, –Childhood disintegrative disorder, –Asperger Syndrome, and –Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)

Autism Defined by deficits in –social interactions and communication, and –repetitive and stereotypic patterns of behavior, with an onset by age three and –accompanied by delays or abnormal functioning in social interaction, language as used in social communication, and/or imaginative play

APA, 2000

Asperger Syndrome (AS) A developmental disability characterized by –qualitative impairments in social relationships, and by restrictive –repetitive patterns of behavior, interests, and activities – absent clinically significant delays in language acquisition, or cognitive development APA, 2000

PDD-NOS Diagnosis given to individuals who have –deficits in reciprocal social interaction, and –impairment in either verbal or non-verbal communication, or restricted interests or behavior, –but they do not meet the diagnosis for autism or AS

CDC, 2008

Autism Spectrum Disorders (ASD)  Autism, PDD-NOS, and Asperger syndrome are collectively referred to as autism spectrum disorders

 Symptoms and characteristics occur across a continuum of severity, or spectrum of severe to mild impairments of social interaction

CDC, 2008

High Functioning Autism (HFA) Not a diagnosis – but you may see this Used to refer to individuals who –meet the criteria for autism and –have an intelligence quotient (IQ) within the normal range Baron-Cohen, 2003

Doesn’t necessarily correlate with how the autistic person relates to you as a patient

Labels  Some see little difference between AS and HFA Koyama, Tachimori, Osada, Takeda, & Kurita, 2007

 Most researchers agree is that in early childhood, individuals with HFA had language delays  Diagnosis or “label” may be influenced by reimbursement & entitlement to services  Do not expect labels to indicate an autistic person’s ability to describe pain symptoms

Howlin, 2000; Partland & Klin, 2006

PDD-NOS Researchers find that PDD-NOS often serves as a diagnosis of exclusion or a catchall diagnosis Walker et al., 2004

Adults Limited prevalence studies of adults with ASD > 46% of individuals AS/HFA were not dx until > age 16 Individuals are being diagnosed with AS/HFA for the first time as adults

Tantam, 2003

Ramsay et al., 2005

Adults (cont’d) Medical practitioners/Mental Health Professionals –Unfamiliar with AS/HFA - not in previous DSM –Survey of GPs in the Bath region, UK found that the medical clinics were only aware of one person with AS/HFA over the age of 19 out of a total population of 98,000 people Powell, 2002

Adults (cont’d) Adulthood dx through –Hx evidence of the DSM IV criteria, and –Present ‘‘failure to develop peer relationships appropriate to developmental level’’ and ‘‘apparently inflexible adherence to specific, nonfunctional routines or rituals’’ American Psychiatric Association, 2000; Ramsay et al., 2005 pp484; Tantam, 2003

ASD & Adulthood Limited data –Poor employment history Hurlbutt & Chalmers, 2004; Muller et al., 2003; Tantam, 2003

–Social factors are a primary contributor to job success as well as job loss among employees with intellectual deficits and/or personality differences

ASD & Adulthood (cont’d) Inability to navigate social interactions in the workplace –contributes to job loss among individuals with AS –difficulty understanding and reacting appropriately to the social demands of the workplace • chit-chat, understanding facial expressions, tone of voice, and sarcasm, and/or social niceties Hurlbutt & Chalmers, 2004; Muller et al., 2003

ASD & Adulthood (cont’d) Growing number of individuals with AS transitioning to the workplace Few adults with AS have had any intervention to address the characteristics of AS that may interfere with success at work Baron-Cohen, 2003; Goddard, Howlin, Britschel, & Patel, 2007; Tantam, 2003

Transition to Adult Providers

Epidemiology  Lifelong neurological-developmental disability  Current estimated prevalence of 1% in US and Europe (Korean 2.6%)  “About 1 in 88 children has been identified with an autism spectrum disorder (ASD)”  “5 times more common among boys (1 in 54) than among girls (1 in 252)” (2000 – 1 in 150)  “ASD commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal, and genetic diagnoses”

CDC, 2012

Clinical Traits Cognitive profile of strengths and weaknesses in 5 main domains: –Language/Communication (verbal and nonverbal) –Social Understanding –Sensory Processing –Motor Skill Performance –Higher-order Thinking (e.g., Planning) Lord & Jones, 2012

Language and Communication  Experience difficulties in expressive or receptive communication  Frequently, large imbalance between expressive and receptive communication  Expansive vocabularies and knowledge of facts may obscure communication difficulties  Communication challenges usually encompass nonverbal cues (e.g., body language) Prelock & Nelson, 2012

Social Understanding  Autistic people experience difficulties in how to interact in social situations, esp. novel situations and situations with high degrees of uncertainty  They rely often on order, rules, and logic to understand the social world  “Unwritten rules” of how to interact present major challenges due to ambiguity and subjectivity  Autistic people also find it challenging to form and maintain social relationships and friendships Kuenssberg, McKenzie, & Jones, 2011

Sensory Processing  Autistic people experience atypical neuro- processing of sensory info from the 5+2 senses – They may feel hypersensitive to some sights, sounds, smells, etc. leading to sensory seeking – They may feel hyposensitive to other sights, sounds, smells, etc. and have sensory avoidance

 Autistic people also react atypically to pain, temperature, and body feelings (e.g., hunger) – Those hyposensitive to pain may fail to recognize injuries and illnesses – Those hypersensitive to cold main wear warm clothing all the time Ben-Sasson, Hen, Fluss, Cermak, & Engel-Yeger, 2009

Measuring Sensory Processing Adolescent/Adult Sensory Profile –Low Registration –Sensation Seeking –Sensory Sensitivity –Sensation Avoiding

Brown CE, Dunn W, Adolescent/Adult Sensory Profile User’s Manual. San Antonio, TX; Psychological Corporation; 2002

Relationship of Sensory Processing to Other Factors Affect2 Mental Health, Quality of Life Indicators3 Anxiety4 Pain Catastrophizing5

2: Engel-Yeger, et al., British Journal of Occupational Therapy, 2011. 3: Kinnealey, et al. The American Journal of Occupational Therapy, 2011. 4: Engel-Yeger, et al. British Journal of Occupational Therapy, 2011. 5: Engel-Yeger, et al. The American Journal of Occupational Therapy, 2011.

Pain Catastrophizing “An exaggerated negative cognitive response to actual or anticipated pain experience”5 –Rumination –Magnification –Helplessness

Predicts pain intensity, disability, psychological distress6

5: Engel-Yeger, et al. The American Journal of Occupational Therapy, 2011. 6: Severeijns, et al. The Clinical Journal of Pain, 2001.

Why Important for Pain? Catastrophizing Awareness of pain triggers Awareness of pain level increasing Falls/Safety Stress Management Organization and Time Management Socialization and Community Involvement

Interventions Awareness Adaptations Accommodations

Motor Skills Autistic persons may experience cognitive difficulties with planning and performance of gross motor skills (e.g., throwing) They may also experience difficulties with planning and performing fine motor skills (e.g., handwriting) Many autistic persons have atypical stature and gait Downey & Rapport, 2012

Higher-Order Thinking  Autistic people tend to have cognitive difficulties w/ goaloriented tasks, such as planning and organization  They tend to focus singularly on certain subjects, interests, and tasks because of problems w/ multi-tasking and shifting attention  Autistic persons also can have trouble w/ higher-order thinking involving regulation and reflection of thinking, emotions, and behavior Corbett, Constantine, Hendren, Rocke, & Ozonoff, 2009

Practice Tips: Communication  Recognize that many autistic patients may have difficulty with selfreport of symptoms of illness, injury, and pain  Ask the right questions: – Does something feel weird or uncomfortable? – Is something bothering you? – Can you show me where it is?

 Be Creative  Recognize that nonverbal cues (e.g., body language) may not match verbal information

Practice Tips: Communication (cont’d) Allow for alternative ways of communication other than spoken language (e.g., writing, sign lang., etc.) Allow patients (when possible) to complete written information on forms before medical visits Some autistic patients may have trouble interpreting form questions Provide for additional time to respond to queries

Practice Tips: Sensory/Motor Autistic patients may not like to be touched They may not want to shake hands: ask Keep in mind that your office or exam room may contain sensory irritants (e.g., fluorescent lights, noises, odors) that bother autistic patients – may prefer a different room Consider presence of undiagnosed injuries and illnesses occluded by sensory issues, particularly pain and temperature

Practice Tips: Sensory/Motor (cont’d)  Adjust your exam (when possible) to account for motor skill difficulties  Adapt your exam (when possible) to minimize sensory problems experiences  Tell the patient what you are going to do and why before you do it. Ask them if it’s OK to do it  If you expect the patient to do follow-up exercises, make sure the patient has the motor skills to do them. Don’t assume

General Practice Tips  When possible, seek supplemental information from friends, family members so the patient doesn’t feel overwhelmed  Explain complex information concretely through rules, guidelines, and rules of thumb  If there are treatment do’s and don'ts or restrictions and limitations, put them in writing as rules to follow

General Practice Tips (cont’d)  When possible, present information in a written manner with accompanying visuals  Refer the patient to a website for follow-up information  Break down history and physical questions into smaller steps and micro-steps

References  American Psychiatric Association. (2000). Pervasive developmental disorders. In Diagnostic and statistical manual of mental disorders (Fourth edition---text revision (DSM-IV-TR). Washington, DC: American Psychiatric Association, 69-70  Baron-Cohen, S. (2003). The systemizing quotient: An investigation of adults with asperger syndrome or highfunctioning autism and normal sex differences. The Royal Society, 1-14.  Ben-Sasson, A., Hen, L., Fluss, R., Cermak, S. A., Engel-Yeger, B., & Gal, E., A Meta-Analysis of Sensory Modulation Symptoms in Individuals with Autism Spectrum Disorders. (2009). Journal of Autism and Developmental Disorders, 39, 1-11.  Brown CE, Dunn W, Adolescent/Adult Sensory Profile User’s Manual. (2002) San Antonio, TX; Psychological Corporation.  Center for Disease Control (CDC). (2008). Autism spectrum disorders. Retrieved March 5, 2008, from  Center for Disease Control (CDC). (2012). Autism Spectrum Disorders (ASDs) Data and Statistics. Retrieved June 210, 2012, from  Corbett, Constantine, Hendren, Rocke, & Ozonoff, (2009). Examining executive functioning in children with autism spectrum disorder, attention deficit hyperactivity disorder and typical development. Psychiatry Research, 166, 210-222.

References  Downey, R., & Rapport, M. J. K. (2012). Motor Activity in Children With Autism: A Review of Current Literature. Pediatric Physical Therapy, 24, 2-20.  Engel-Yeger B, Dunn W. (2011). Exploring the relationship between affect and sensory processing patterns in adults. British Journal of Occupational Therapy. 74;10:456-464.  Engel-Yeger B, Dunn W. (2011). The relationship between sensory processing difficulties and anxiety level of healthy adults. British Journal of Occupational Therapy. 74;5:210-216.  Engel-Yeger B, Dunn W. (2011). Relationship between pain catastrophizing level and sensory processing patterns in typical adults. The American Journal of Occupational Therapy. 65;1:e1-e10.  Goddard, L., Howlin, P., Britschel, B., & Patel, T. (2007). Autobiographical memory and social problem-solving in asperger syndrome. Journal of Autism and Developmental Disorders, 37, 291-300.  Howlin, P. (2000). Outcome in adult life for more able individuals with autism or asperger syndrome. The National Autistic Society, 4(1), 63-83.  Hurlbutt, K., & Chalmers, L. (2004). Employment and adults with asperger syndrome. Focus on Autism and other Developmental Disabilities, 19(4), 2004.

References  Kinnealey M, Keonig KP, Smith S. Relationships between sensory modulation and social supports and healthrelated quality of life. The American Journal of Occupational Therapy. 65;3:320-327, 2011.  Koyama, T., Tachimori, H., Osada, H., Takeda, T., & Kurita, H. (2007). Cognitive and symptom profiles in Asperger's syndrome and high-functioning autism. Psychiatry Clinical Neuroscience, 61(1), 99-104.  Kuenssberg, McKenzie, & Jones, (2011). The association between the social and communication elements of autism, and repetitive/restrictive behaviours and activities: A review of the literature. Research in Developmental Disabilities, 32, 2183-2192.  Lord, C. & Jones, R. M. (2011). Annual Research Review: Re-thinking the classification of autism spectrum disorders. Journal of Child Psychology and Psychiatry, 53, 490-509.  Muller, Schuler, A., Burton, B., & Yates, G. (2003). Meeting the vocational support needs of individuals with asperger syndrome and other autism spectrum disabilities. Journal of Vocational Rehabilitation, 18, 163-175.  Partland, J., & Klin, A. (2006). Asperger's syndrome. Adolescent Medicine Clinics, 17, 771-788.  Powell, A. (2002). Avon asperger syndrome project 1999-2002. London:The National Autistic Society.

References  Prelock & Nelson (2012). Language and communication in autism: an integrated view. Pediatric Clinics of North America, 59, 129-145.  Ramsay, J., Brodkin, E., Cohen, M., Listerud, J., & Rostain, A. (2005). Better strangers: Using the relationship in psychotherapy for adult patients with asperger syndrome. Psychotherapy: Theory, Research , Practice, Training, 42(4), 483-493.  Severeijns R, Vlaeyen JWS, van den Hout MA, Weber WEJ. (2001) Pain catastrophizing predicts pain intensity, disability, and psychological distress independent of the level of physical impairment. The Clinical Journal of Pain. 17;2:165-172.  Tantam, D. (2003). The challenge of adolescents and adults with asperger syndrome. Child and Adolescent Psychiatric Clinics, 12, 143-163.  Walker, J., J, G., Mahoney, W., Strawbridge, C., Szatmari, P., Thompson, A., et al. (2004). Specifying pdd-nos: A comparison of pdd-nos, asperger syndrome, and autism. Journal of the American Academy of Child and Adolescent Psychiatry. 43(2), 172-180.

Pain and Autism: Clinical Traits, Sensory Perceptions and Practice Tips  

Barbara L. Kornblau, JD, OTR/L, CPE Susan McNulty, OTD, OTR/L Scott Michael Robertson, BS, MHCI

Pain and Autism: Clinical Traits, Sensory Perceptions and Practice Tips  

Barbara L. Kornblau, JD, OTR/L, CPE Susan McNulty, OTD, OTR/L Scott Michael Robertson, BS, MHCI