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Care of the Adolescent/Adult with an Autism Spectrum Disorder. Christine A. Sanpietro RN, MSN, CPNP Children’s Specialized Hospital Toms River, New Jersey October 26, 2012. OBJECTIVES. Discuss the core features of autism spectrum disorders(ASD).

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Care of the Adolescent/Adult with an Autism Spectrum Disorder


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    1. Care of the Adolescent/Adult with an Autism Spectrum Disorder Christine A. Sanpietro RN, MSN, CPNP Children’s Specialized Hospital Toms River, New Jersey October 26, 2012

    2. OBJECTIVES • Discuss the core features of autism spectrum disorders(ASD). • Discuss how the core features of ASD affect individuals across the life span. • Discuss common co-morbidities/treatments seen in individuals with ASD. • Explain the difficulties facing adolescents/families with ASD as they approach adulthood. • List available resources for families with a young adult with ASD.

    3. PROPOSED DSM V CRITERIA FOR ASD

    4. ASD Prevalence • 1:88 have ASD nationwide(CDC, 2008) • 1:49 in NJ • Four to five times more common in males • Siblings of a child with ASD have up to an 18% chance of being diagnosed, higher in twins

    5. ASD cause/s?? • ASD is a genetic disorder possibly triggered by environmental factors • Paternal age • Assisted conception • Birthweight/gestational age/neonatal jaundice • Family hx ASD • Family hx mental health diagnoses

    6. Characteristics of Adolescents/Adults with ASD • Social Communication • Non-verbal • Difficulty with abstract thought, inability to listen to others, or accept another’s point of view, inflexible thinking, literal interpretation • May be painfully shy or extremely outgoing (in your face) • Problems managing appropriate social conduct/interactions • Difficulty with sexual relationships/dating • Misinterpretation of cues from others

    7. Characteristics of Adolescents/Adults with ASD • Restrictive Interests and Repetitive Behaviors • Change in routines can produce stress/anxiety • Specialized areas of interest • Increase in compulsions • Sensory sensitivities

    8. Characteristics of Adolescents/Adults with ASD • Other symptoms • Problems keeping track of time once involved in a task he/she enjoys • Lack of emotional control • Problems with executive functioning (ADHD, multi-tasking) • Difficulty with anger management • Feelings of anxiety/depression • Aggressive/self abusive behaviors • Tantrums • Sleep problems

    9. Issues in Adolescence and Young Adulthood • Life Goals • Schools & Transition Plans • Social Skills • Sexuality • Leisure/Recreation • Post-secondary choices: College? Job?

    10. Life Goals • Get out of parents’ house • Be happy • Be successful • Have people who enjoy you • Have people you enjoy How to reach those goals????

    11. Transition Plan • Begin at age 14 (earlier, if needed) • Long-range plan of skills needed for adult life • Includes instruction, related services, community experiences, employment & other post-school adult living objectives, &, when needed, daily living skills & functional vocational evaluation • Should be individualized, student-driven • Addresses strengths, challenges, interests, goals, preferences & learning style • Link with other agencies (DDD, DVR, SSI, Centers for Independent Living, etc)

    12. DDD/DVRS and Transition DDD = Division of Developmental Disabilities. DDD is a state organization that provides primarily "long-term" services such as day and residential services. Day services include supported employment and sheltered workshops. DDD can also provide respite and family support services. A child must be declared "eligible" to receive services from DDD. To ensure smooth transition, a child can be placed on DDD day programs waiting list 5-7 years before educational entitlement ends. Also can help with obtaining guardianship. • DVRS = Division of Vocational Rehabilitation Services. DVRS can provide job training, education, and adaptive equipment. It can also assist with job placement and workshop services. DVRS is also a state organization whose services are primarily “short-term” in nature. DVRS will consult with the school district about providing services, such as job coaching, and then remove themselves once the training is completed. Families should contact DVRS directly for more specific information about what services can be obtained.

    13. Education/Employment Challenges • Interpersonal weaknesses • Literal interpretation of language • Rigid • Perseverative • Co-morbid learning or sensory issues

    14. Even More Challenges • Establishment of a guardian • Is one necessary for this individual? • The individual may not agree • Lengthy process • $$$$ • Medical Practitioners • Primary, OB/GYN, Specialists • Mental Health Providers • Psychiatric Practitioner • Psychologist/Counselor • Insurance • Private, Medicaid, Medicare • Permanency Planning • If not capable of independent living, where will this individual live as an adult? • If parents are no longer alive/able to care for him/her what is the plan?

    15. Myths about sexuality and ASD • Persons with ASD have little or no interest in sex • Persons with ASD are hypersexual • Persons with ASD are solely heterosexual • People with ASD are not capable of forming intimate relationships • People with ASD are not capable of feeling hurt or exploited

    16. TRUTH IS…. • People with ASD are sexual beings and vary widely regarding interest in sex and/or developing a relationship • So, we need individualized, effective instruction across ability spectrums • Family Practice, OB/GYN, Primary Care

    17. CONCERNS • Inappropriate masturbation (in public) • Difficulty with menstrual hygiene • Depressed because no girlfriend/boyfriend • Most adolescents get some of their info from peers • Internet – concern for inaccurate information and/or predators • Sexuality education often only provided reactively, not proactively

    18. TEACHING • Basic info such as human growth & development, puberty, masturbation, sexual abuse, personal safety, STDs, pregnancy, childbirth, parenthood, sexual orientation • Public vs. private behavior • Good touch vs. bad touch • Personal boundaries • Social skills and relationships • Dating skills (hard to teach, boys vs. girls) • Personal responsibility and values • Who is a friend/stranger/types of strangers

    19. Mental Health Co-Morbidities • Anxiety 25%- 55.3% • ADHD 25% – 61.7% • Mood Disturbance 16%- 26% • Tic disorder 15.2% • Bipolar disorder 7% • Other psychosis 7.8%

    20. Medical Co-Morbidities • Seizures • Co-occurrence @40% • More common if also intellectual impairment • EEG for those with lower IQ, known genetic disorder, symptoms • Gastro-intestinal • Higher incidence of constipation and feeding issues but no difference for other GI issues • Poor diets, low in fiber, restricted intake • Sleep • 44-83% of those with ASD • Insomnia, delayed onset, night waking, early waking, decreased need for sleep • Causes include: - differences in neurotransmitters (GABA, serotonin, melatonin) -ASD symptomatology (anxiety, sensitivity to stimuli) • Effects of poor sleep: irritability, fatigue

    21. Commonly Used Medications • Stimulants and Non-Stimulants (ADHD) • Stimulants - Methylphenidate, Dexmethylphenidate, Amphetamine salts • Non-stimulants – Atomoxetine • Alpha Adrenergic Agonists – Guanfacine, Clonidine • MAY MAKE CERTAIN ASD SYMPTOMS WORSE! • SSRI (Depression, Anxiety, OCD) • Fluoxetine, Sertraline, Citalopram • WATCH FOR ACTIVATION! • BLACK BOX WARNING FOR SSRI & ATOMOXETINE

    22. Commonly Used Medications(cont.) • Atypical Antipsychotics (Unstable mood, self injury, aggression) • Risperidone, Aripiprazole • The only medications with an indication for ASD • Sleep Aids • Melatonin • Zolpidem, Eszopiclone • Diphenhydramine

    23. SELF-ADVOCACY • Knowledge of one’s disability • Knowledge of rights • Self-assessment of learning styles • Appropriate communication • Assertiveness skills

    24. ASD AS A STRENGTH • Nothing about me, without me • “Autism Speaks doesn’t speak for me” • Neurotypicals, Aspies • Autism Self-Advocacy Network

    25. RESOURCES/REFERENCES • www.asah.org/pdf/asah_transition.pdf • www.spannj.org/BasicRights/transition_to_adulthood.htm • www.aspfi.org Asperger Foundation International. Services throughout the US for adults with ASD. • www.aspfi.org AspFi’s College Resource Guide – a directory of colleges’ services for students with ASD. • Neurodiversity.org • www.faaas.org Families of Adults with ASD • www.aspires-relationships.com Marriage and relationships with people with ASD. • www.autismspeaks.org/community/familyservices

    26. REFERENCES/RESOURCES (cont.) • http://www.autismnj.org/doc/whitepaper.pdf Meeting the Needs of Adults with Autism; a Blueprint for the Future • http://autismnj.org • http://cdc.gov • http://www.dsm5.org • https://online.epocrates.com • Blann, L., Ioriatti, L, Robertiello, A. P, & Walpin, L  (2012)  “Transition to community: Adolescence, employment and companionship” (Chapter 10) in E. Giarelli and M.R. Gardner (editors): Nursing of Autism Spectrum Disorder: Evidence-based Integrated Care Across the Lifespan. NY: Springer Publishing Company.

    27. QUESTIONS? CHRISTINE SANPIETRO CHILDREN’S SPECIALIZED HOSPITAL csanpietro@childrens-specialized.org