The First 100 Days: Supporting Children with Autism Spectrum Disorders

Educational Objectives

The goals of this program are to improve management of autism spectrum disorders (ASDs). After hearing and assimilating this program, the clinician will be better able to:

1. Equip families of children diagnosed with ASD with tools to assist them in coping with the first 100 days after diagnosis.

2. Support caregivers and siblings of patients diagnosed with ASD and make appropriate referrals.

Summary

The First 100 Days Kit: free downloadable resource from Autism Speaks (national organization for parents and professionals that supports families of children with autism spectrum disorders [ASDs]); gives families critical information for coping with first 100 days after diagnosis of ASD

Family concerns: parents often ask primary care provider (PCP) about reasons for diagnosis of ASD and implications for their child; stages of reaction — similar to those for any diagnosis that involves significant change in child’s life; most important message after diagnosis — child remains same person, but now with diagnosis of ASD

Diagnosis: no gold standard exists; made clinically; existing assessment methods (eg, Autism Diagnostic Observation Schedule) are subjective; based on observed behavior and educational and psychologic testing

Etiology: unknown; multifactorial — has genetic, epigenetic, and environmental components; relative contribution of each factor impossible to predict in one particular child; timing of exposure and several infectious diseases during pregnancy potentially linked; small number of genetic disorders (eg, fragile X, tuberous sclerosis, Angelman syndrome) linked to ASD in minority of cases

Symptoms: vary greatly; each case unique; prognosis unpredictable; generally, symptoms last throughout lifetime, but may change developmentally; may or may not change with intervention

Associated physical and medical issues: seizure disorder — more common in children who have more severe forms of ASD; gastrointestinal disorders — vary widely; may be related to tendency to be “picky eater”; sleep dysfunction — common; often responsive to behavioral modifications; parents may be reluctant to set limits (ie, promote good sleep hygiene) due to ASD (counseling families important role for PCP); sensory integration disorder — eg, aversion to certain materials or foods of certain textures; pica — eating nonfood items; common

Stages of family response: initial sadness and crying; anger; denial (families often seek one or more alternate opinions); loneliness; sometimes, acceptance

Caring for caregiver: families should limit amount of time spent on internet (too much information [not all beneficial]); clinician can discuss trusted websites; tips for parents — involvement with ASD community; parent-to-parent support important; tips for brothers and sisters — difficulties of growing up with affected sibling (eg, parental focus on child with disability; social stigma) often underrecognized and should be acknowledged at sibling’s well-child visits; grandparents and extended family — can be either helpful or detrimental; obtaining services — early intervention mainstay for children <3 yr of age; ASD qualifies children >3 yr of age for Individualized Education Program (IEP); educational interventions — foundation of treatment of ASD; inform families about Individuals with Disabilities Education Act, “free and appropriate public education,” and least restrictive environment

Treatment: primarily educational or behavioral; no single therapy works for every child; maximizing available resources for referral helpful; applied behavioral analysis — most common treatment; structured regimen using antecedent, resulting behavior, and consequence, and allows tracking of child’s responses; includes discrete trial training, verbal behavior (for children with verbal skills) and pivotal response treatment (more sophisticated subtype of verbal behavior); Floortime — second most common treatment; child-directed; parent or therapist engages child in communication on his or her level; Relationship Development Intervention — administered by getting down to child’s level and attempting to reinforce emotional response, social coordination, and language; Training and Education of Autistic and Related Communication Handicapped Children — structured classroom approach of total communication and behavioral supports; Social Communication, Emotional Regulation, and Transactional Support — classroom-based approach; can also be used by parents at home to increase social communication; associated treatments — speech and language therapy; occupational therapy; sensory integration therapy; physical therapy; auditory integration therapy; picture exchange communication system; gluten-free casein-free diet

Assembling team: supports for child from medical, intervention, and related services teams; many families benefit from regimented structure using week-by-week planner from toolkit (addresses obtaining services, up to and including development of IEP)

Safety planning: medical identification bracelets and personal tracking devices found to be helpful; families with nonverbal children can create informational handout about child; recent study reported ≤60% of parents of children with ASD had child wander from home

Other supportive resources: Huffington Post blog — offers practical tips; focuses on importance of maintaining common sense and continuity with broader world; 10 Things Every Child with Autism Wishes You Knew — discusses concrete nature of children with ASD, possibly limited vocabulary and language, difficulty with social interactions, and different triggers for meltdowns; encourages parents to love child unconditionally, and providers to have patience

Conclusions: according to Centers for Disease Control and Prevention (CDC), prevalence of ASD 1 in 50; critical for PCP and specialists to have tools to support patients after diagnosis, resources for referrals, and awareness of available treatments; medical home important for children with ASD

Readings

Anderson C et al: Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics 2012 Nov;130(5):870-7; Blenner S et al: Diagnosis and management of autism in childhood. BMJ 2011 Oct 21;343:d6238; Bolton JM et al: Predicting suicide attempts with the SAD PERSONS scale: a longitudinal analysis. J Clin Psychiatry 2012 Jun;73(6):e735-41; Caronna EB et al: Revisiting parental concerns in the age of autism spectrum disorders: the need to help parents in the face of uncertainty. Arch Pediatr Adolesc Med. 2007 Apr;161(4):406-8; Cheung AH et al: Guidelines for Adolescent Depression in Primary Care (GLAD-PC): II Treatment and ongoing management. Pediatrics 2007 Nov;120(5):e1313-26; Coury D et al: Healthcare for children with autism: the Autism Treatment Network. Curr Opin Pediatr 2009 Dec;21(6):828-32; Johnson CP, Myers SM: Identification and evaluation of children with autism spectrum disorders. Pediatrics 2007 Nov;120(5):1183-215; March J et al: Fluoxetine, cognitive-behavioral therapy, and their combination for adolescents with depression: Treatment for Adolescents With Depression Study (TADS) randomized controlled trial. JAMA 2004 Aug 18;292(7):807-20; March JS et al: The Treatment for Adolescents With Depression Study (TADS): long-term effectiveness and safety outcomes. Arch Gen Psychiatry 2007 Oct;64(10):1132-43; March J et al: The Treatment for Adolescents With Depression Study (TADS): outcomes over 1 year of naturalistic follow-up. Am J Psychiatry 2009 Oct;166(10):1141-9; Notbohm E: Ten Things Every Child with Autism Wishes You Knew. Arlington, TX: Future Horizons; 2005; Zuckerbrot RA et al: Guidelines for Adolescent Depression in Primary Care (GLAD-PC): I Identification, assessment, and initial management. Pediatrics 2007 Nov;120(5):e1299-312; First 100 Days Kit — Autism Speaks Web site. www.autismspeaks.org/family-services/tool-kits/100-day-kit; GLAD-PC Web site. www.gladpc.org/

Disclosures

In adherence to ACCME Standards for Commercial Support, Audio-Digest requires all faculty and members of the planning committee to disclose relevant financial relationships within the past 12 months that might create any personal conflicts of interest. Any identified conflicts were resolved to ensure that this educational activity promotes quality in health care and not a proprietary business or commercial interest. For this program, Dr. Augustyn and the planning committee reported nothing to disclose.

Acknowledgements

Dr. Augustyn was recorded at Current Clinical Pediatrics 2013, held April 15-19, 2013, in Hilton Head, SC, and sponsored by Boston University School of Medicine, Department of Pediatrics, and the Department of Continuing Medical Education. To learn more about CME activities from Boston University School of Medicine, please visit www.bu.edu/cme. The Audio-Digest Foundation thanks Dr. Augustyn and the sponsors for their cooperation in the production of this program.

CME/CE INFO

Accreditation:

The Audio- Digest Foundation is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

The Audio- Digest Foundation designates this enduring material for a maximum of 0 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Audio Digest Foundation is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center's (ANCC's) Commission on Accreditation. Audio Digest Foundation designates this activity for 0 CE contact hours.

Lecture ID:

PD592601

Expiration:

This CME course qualifies for AMA PRA Category 1 Credits™ for 3 years from the date of publication.

Instructions:

To earn CME/CE credit for this course, you must complete all the following components in the order recommended: (1) Review introductory course content, including Educational Objectives and Faculty/Planner Disclosures; (2) Listen to the audio program and review accompanying learning materials; (3) Complete posttest (only after completing Step 2) and earn a passing score of at least 80%. Taking the course Pretest and completing the Evaluation Survey are strongly recommended (but not mandatory) components of completing this CME/CE course.

Estimated time to complete this CME/CE course:

Approximately 2x the length of the recorded lecture to account for time spent studying accompanying learning materials and completing tests.

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