Idea Transcript
Diagnosing and Treating Autism Diagnosis and in South Dakota
Treatment of Autism Daisha Seyfer, MD, FAAP in South Dakota Developmental‐Behavioral Pediatrician Daisha Seyfer, MD, FAAP Developmental-Behavioral Pediatrician
Disclosure • Behavior Care Specialists, Inc. provides ABA services in South Dakota
Autism • Leo Kanner first described Autism in 1943 in his paper Autistic Disturbance of Affective Contact in which he described the behavior of 11 children • “Autism” from the Greek word “auto” meaning self. Autism had also been used to mean “escape from reality”
Demographics • Occurs in all racial, ethnic, and socioeconomic groups • Almost 5 times more common among boys (1 in 42) than girls (1 in 189) • Prevalence in Asia, Europe, and North America- 1%
Centers for Disease Control website, Accessed 1/7/16. http://www.cdc.gov/ncbddd/autism/data.html
Prevalence
Centers for Disease Control website, Accessed 1/7/16. http://www.cdc.gov/ncbddd/autism/data.html
DSM-V Criteria •
1. Deficits in social communication and social interaction across multiple contexts, currently or by history – Deficits in social/emotional approach. Abnormal social approach, conversational difficulties, reduced sharing of interests/emotions/affect, decreased response to social interaction – Deficits in nonverbal communicative behaviors (eye contact, body language, gestures), lack of facial expressions/nonverbal communication – Deficits in developing/maintaining/understanding relationships. Difficulty adjusting behavior to social context. Difficulties in imaginative play or in making friends. Possible absence of interest in peers.
DSM-V Criteria cont’d 2. Restricted, repetitive patterns of behavior/interests/activities, as manifested by at least two of the following: - Stereotyped or repetitive motor movements, use of objects, speech (e.g., simple motor stereotypies, lining up objects, echolalia, idiosyncratic phrases). - Insistence on sameness, inflexible adherence to routines, ritualized patterns of behavior (e.g., difficulty with transitions, rigid thinking, etc..) - Restricted, fixated interests abnormal in intensity or focus. - Hyper- or hypo reactivity to sensory input or unusual sensory interests
DSM-V criteria continued • 3. Symptoms must be present in the early developmental period (but may not become manifest until social demands exceed limited capacities, or may be masked by learned strategies later in life • 4. Symptoms must cause clinically significant impairment in social, occupational, or other important areas of current functioning • 5. These disturbances are not better explained by intellectual disability or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
DSM-V criteria continued Specify if: With/without intellectual impairment With/without language impairment Associated with a known medical or genetic condition or environmental factor - Associated with another neurodevelopmental, mental, or behavioral disorder - With catatonia • -
DSM-V autism severity levels • Level 3- Requiring very substantial support – Severe deficits in verbal/nonverbal social communication, limited initiation of social interaction – Inflexible behavior, extreme difficulty coping with change, restricted/repetitive behaviors markedly interfere with functioning
DSM-V autism severity levels • Level 2- Requiring substantial support – Marked deficits in verbal/nonverbal social communication, social impairments apparent even with supports in place, reduced or abnormal responses to social overtures. – Inflexible behavior, difficulty coping with change, restricted/repetitive behaviors appear frequently enough to be apparent to the casual observer.
DSM-V autism severity levels • Level 1- Requiring support – With supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions. – Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities.
In a Nutshell • Some people with autism need a lot of help in their daily lives • Others need less
Autism Spectrum Disorder • DSM‐V Includes: • Autistic Disorder • Pervasive Developmental Disorder, NOS • Asperger syndrome • These are now all called Autism Spectrum Disorder
Causes of Autism • There may be many different factors that make a child more likely to develop an ASD • Environmental, biologic, and genetic factors
Risk Factors • Genes are one of the risk factors – Children who have a sibling with ASD are at higher risk of having an ASD themselves – Identical twins- if one ASD, other has a 3695% chance – Fraternal twins- if one ASD, other has a 031% chance
• More common in certain genetic conditions like Fragile X, tuberous sclerosis, Down syndrome
Risk Factors continued • Valproic acid and thalidomide during pregnancy have been linked to a higher risk of ASD • Children born to older parents at higher risk • Prematurity and low birth weight may be higher risk for ASD
Other Characteristics • IQ at age 8 years among children with ASD‐ Autism and Developmental Disabilities Monitoring Network, 2010
Centers for Disease Control website, Accessed 1/7/16. http://www.cdc.gov/ncbddd/autism/data.html
Developmental Screening ‐ Per AAP guidelines, M‐CHAT should be done at 18 and 24 month visits
Red Flags • No babbling, pointing, or other gestures by 12 months • No single words by 16 months • No 2‐word spontaneous (not echolalic) phrases by 24 months • Loss of language or social skills at any age
Diagnosis of Autism • Signs and symptoms may begin to show before age 18 months • By age 2, a diagnosis by an experienced professional can be considered reliable • Many children are not diagnosed until age 4 years or later • Parents may notice a developmental problem before first birthday • Differences in social, communication, and fine motor skills may be evident from 6 months
Diagnosing Autism in South Dakota • Places to get an autism diagnostic evaluation in South Dakota: – Behavior Care Specialists – LifeScape – Center for Disabilities – Black Hills Special Services, Sturgis
• Often school district is a good place to start • Schools may do their own diagnostics or may contract out
Autism evaluation includes: • Observation of play and child‐caregiver interactions • Detailed history and physical exam • Review of records • Developmental assessment of all skills • Language evaluation • Hearing test
Evaluation of Autism • Autism specific tests: – ADOS: Autism Diagnostic Observation Schedule – GARS: Gilliam Autism Rating Scale – CARS: Childhood Autism Rating Scale
Medical Evaluation of a Child with Autism • Developmental History – Gross motor skills – Fine motor skills – Speech and language skills – Social skills – Adaptive skills
Medical Evaluation of a Child with Autism • History – Prenatal history, exposure to illicit drugs, alcohol, toxins, prenatal infections – Prematurity – Chronic medical conditions – Seizures
Medical Evaluation of a Child with Autism • Physical examination • Look for features that may be part of a genetic syndrome – Fragile X – FAS – Tuberous sclerosis – Rett syndrome
Medical Evaluation of a Child with Autism Formal Hearing Assessment‐ by an audiologist Vision assessment Testing for Fragile X Chromosomal microarray Other genetic testing as indicated Consider referrals to genetics or pediatric neurology if indicated • EEG, MRI, metabolic testing may be indicated
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Treatment of Autism in SD ‐ ‐ ‐ ‐ ‐ ‐
Early intervention Supportive therapies Behavior therapy Social supports Family supports Medications
Treatment of Autism No cure Early intervention is key Referral to Birth to Three Can also ask for an autism evaluation through Birth to Three • The earlier therapies and treatments are started the better the outcome
• • • •
Early Intervention • Part C of the Individuals with Disabilities Education Act (IDEA) • Children ages 0‐3 • ANYONE can refer a child for Early Intervention Services (parents, grandparents, pediatricians, etc..) • No diagnosis needed • South Dakota Birth to Three program – http://www.doe.sd.gov/oess/Birthto3.aspx
Therapies • If speech delay/abnormality‐ Speech Therapy • If fine motor or sensory‐ Occupational Therapy • If gross motor delays‐ Physical Therapy • Schools may provide these services • Can also do privately • Don’t necessarily need an autism diagnosis to access these therapies
Behavior Therapy • Behavioral Interventions are the first line of strategy in managing behavior problems! • Behavior therapy is best evidence‐based therapy for ASD • Goal of behavior therapy: – Address problem behavior (aggression, self‐injury, etc.) – Teach communication – Teach social behavior – Teach self‐help skills (including toileting and feeding) – Teach basic academic skills
Applied Behavior Analysis (ABA) • Considered the evidence‐based best practice treatment for autism spectrum disorder • Most effective method to teach children with ASD • Scientific discipline founded in 1938 • Lovaas, 1987 • Substantial research base to support use • Endorsed by US Surgeon General, National Institutes of Health (NIH), and American Academy of Pediatrics (AAP) • 44 states require insurers to cover ABA to some extent, including SD Lovaas, O.I. (1987). Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children. J Consult Clin Psychol, 55(1), 3-9.
Behavior Therapy • Behavior modification techniques include: – Positive reinforcement – Repetition – Prompting – Shaping – Differential reinforcement of other behaviors
Applied Behavior Analysis (ABA)
Applied Behavior Analysis (ABA)
Applied Behavior Analysis (ABA) • Uses reinforcement to motivate and shape desired behavior • Facilitate the development of language, positive skills, and social behavior • Helps reduce social and behavioral problems
Benefits of ABA • Studies have shown that kids with ASD who receive ABA may make significant and sustained gains in: – IQ – Language – Academic performance – Self‐care behaviors – Social skills Myers S. and Johnson C.P. Management of Children with Autism Spectrum Disorders. Pediatrics 2007; 120; 1162-1182.
Problems ABA can address • • • • • • •
Functional Living Skills Language Reading Social Skills Peer Interactions Academic Engagement Decreasing Inappropriate Behaviors
Address disruptive behaviors • ABA can address: – Tantrums – Noncompliance – Feeding problems – Aggression – Self‐injury – Compliance with special activities such as medical appointments
AAP Autism Recommendations • Intervention as soon as an ASD diagnosis is considered • Intensive behavioral intervention at least 25 hours per week • Inclusion of a family component • Curricula that address: – – – –
Functional, spontaneous communication Social & adaptive skills Cognitive skills Reducing problem behaviors
Myers S. and Johnson C.P. Management of Children with Autism Spectrum Disorders. Pediatrics 2007; 120; 1162-1182.
AAP Recommendations Cont’d • Speech Therapy • Social skills instruction • Occupational therapy and/or sensory integration therapy • Medical management of: – Seizures – GI problems – Sleep disturbance
Medications • Medications are not the first line of therapy • Stimulants: Target symptoms of hyperactivity, impulsivity, and distractibility • SSRI’s: Target anxiety, OCD, and depression • Alpha agonists: Target symptoms of impulse control, hyperactivity, tics, emotional outbursts, aggression • Atypical Antipsychotics: Target symptoms of irritability, aggression, repetitive behaviors – Risperidone – Aripiprazole
Social supports • Social skills groups – Autism Behavioral Consulting, Sioux Falls – At your child’s school – LifeScape
• Social Thinking groups • Opportunities to interact with typically‐ developing peers • Recruit teachers and others to help promote child’s social skills
Family supports • Providing education and resources • Emotional support • Assisting parents in advocating for their child’s needs • Sometimes parental referral for counseling or mental health services is needed • Encouragement to seek support from friends, relatives, other families • Autism Support Network‐ http://www.autismsupportnetwork.com/
Prognosis • Difficult to predict • Early identification leads to better outcome • Cognitive functioning is the most important predictor of outcome • Those with average intelligence more likely to achieve independent functioning as adults
Economic costs of autism • Total costs for children in the US estimated $11.5 billion ‐ $60.9 billion (2011) • Includes direct and indirect costs – Medical care – Special education – Lost parental productivity
Economic costs continued • 2005 average annual medical costs for Medicaid‐enrolled kids with ASD‐ $10,709 per child • Six times higher than that for kids without ASD ($1812) • Intensive behavioral interventions (ABA) can cost in excess of $40,000 to $60,000 per child per year Centers for Disease Control website, Accessed 1/7/16. http://www.cdc.gov/ncbddd/autism/features/autism-keyfindings2012.html
ABA Accessibility in SD • Not every child in SD can access ABA due to insurance coverage • Avera is only large group plan that covers • TriCare covers • Some self‐funded insurance companies will cover – – – –
Starbucks Schwan’s Wal‐Mart Wells Fargo
Autism Advocacy in SD • 2014‐ Parent and provider group initiated bill to begin to get ABA coverage after SD Wellmark announced they were dropping coverage • Bill killed in senate • State agreed to fund a study of the issue‐ to be readdressed once results were in
Autism Advocacy in SD • Initial bill for 2015 was actually presented via the governors office after bringing key stakeholders (mainly insurance companies) to the table. • Bill offered very little benefit/coverage to kids and families. • Families lobbied hard to get a stronger version of the bill passed and it was passed in the House but defeated in the Senate (much like the previous year).
SD Autism Law • Passed in 2015 • Severe restrictions limit utility to South Dakota families – Tiered service model not covered – Restrictive dollar caps
• Only ONE South Dakota family has benefitted from this law (as far as I am aware), and ONLY because family appealed and appealed
SD Autism Law • In a Nutshell: – We have lot more work to do!
Family and Provider
RESOURCES
Resources for Families • Autism Spectrum Disorders: What Every Parent Needs to Know. Rosenblatt & Carbone.
Resources for Families • Autism Speaks First 100 Days Kits •
https://www.autismspeaks.org/family‐ services/tool‐kits/100‐day‐kit
Resources for Families • Autism Speaks Sleep Toolkit •
https://www.autismspeaks.org/science/resourc es‐programs/autism‐treatment‐network/tools‐ you‐can‐use/sleep‐tool‐kit
Resources for Families • Autism Speaks Parent’s Guide to Applied Behavior Analysis •
https://www.autismspeaks.org/science/resourc es‐programs/autism‐treatment‐network/atn‐air‐ p‐applied‐behavior‐analysis
Resources for Families • Autism Speaks Parent’s Guide to Toilet Training •
https://www.autismspeaks.org/science/re sources‐programs/autism‐treatment‐ network/atn‐air‐p‐toilet‐training
Resources for Families • Autism Speaks Dental Toolkit •
https://www.autismspeaks.org/famil y‐services/tool‐kits/dental‐tool‐kit
Resources for Families • Autism Speaks Haircutting Training Guide •
https://www.autismspeaks.org/family‐ services/tool‐kits/tips‐successful‐haircuts
Resources for Families • Other Toolkits/Resources available for free download on Autism Speaks website
• • • • • • • • • • • •
Advocacy Toolkit Blood Draw Toolkit Dental Professional’s Toolkit Guide for Managing Constipation Guide to Feeding Behavior Guide to EEGs Guide to Pica Guide to Puberty & Adolescence Tools for Successful Vision Exams Challenging Behaviors Toolkit IEP Guide & Resources And more!
There is no Ham in Hamburgers
Quirks and Chaos blog, Accessed 1/7/16. http://quirks-andchaos.blogspot.com/2015/09/there-is-no-ham-in-hamburgers.html
Resources for Providers • CDC’s Learn the Signs. Act Early. • http://www.cdc.gov/ncbdd d/actearly/index.html
Resources for Providers • Autism: Caring for Children with Autism Spectrum Disorders: A Resource Toolkit for Clinicians, 2nd Ed. •
‐ Dozens of handouts in English and Spanish on a variety of ASD‐ related topics
References • • • • • • • • • •
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (5th ed). Washington, DC: American Psychiatric Publishing. 2013. Cohen D, Pichard N, Tordjman S, Baumann C, Burglen L, Excoffier E, Lazar G, Mazet P, Pinquier C, Verloes A, Heron D. Specific genetic disorders and autism: Clinical contribution towards their identification. J Autism Dev Disord. 2005; 35(1): 103‐116. Christensen J, Grønborg TK, Sørensen MJ, Schendel D, Parner ET, Pedersen LH, Vestergaard M. Prenatal valproate exposure and risk of autism spectrum disorders and childhood autism. JAMA. 2013; 309(16): 1696‐1703. DiGuiseppi C, Hepburn S, Davis JM, Fidler DJ, Hartway S, Lee NR, Miller L, Ruttenber M, Robinson C. Screening for autism spectrum disorders in children with Down syndrome. J Dev Behav Pediatr. 2010; 31: 181‐191. Durkin MS, Maenner MJ, Newschaffer CJ, Lee LC, Cunniff CM, Daniels JL, Kirby RS, Leavitt L, Miller L, Zahorodny W, Schieve LA. Advanced parental age and the risk of autism spectrum disorder. Am J Epidemiol. 2008; 168(11): 1268‐ 1276. Gardener H, Spiegelman D, Buka SL. Perinatal and neonatal risk factors for autism: a comprehensive meta‐analysis. Pediatrics. 2011; 128(2): 344‐355. Hall SS, Lightbody AA, Reiss AL. Compulsive, self‐injurious, and autistic behavior in children and adolescents with fragile X syndrome. Am J Ment Retard. 2008; 113(1): 44‐53. Hallmayer J, Cleveland S, Torres A, Phillips J, Cohen B, Torigoe T, Miller J, Fedele A, Collins J, Smith K, Lotspeich L, Croen LA, Ozonoff S, Lajonchere C, Grether JK, Risch N. Genetic heritability and shared environmental factors among twin pairs with autism. Arch Gen Psychiatry. 2011; 68(11): 1095‐1102. Handleman, J.S., Harris, S., eds. Preschool Education Programs for Children with Autism (2nd ed). Austin, TX: Pro‐ Ed. 2000. Huquet G, Ey E, Bourgeron T. The genetic landscapes of autism spectrum disorders. Annu Re Genomics Hum Genet. 2013; 14: 191‐213.
References cont’d • • • • • • • • • • • • •
Johnson, Chris P. Identification and Evaluation of Children with Autism Spectrum Disorders, Pediatrics. 2007 November; 120(5): 1183‐ 1215. Lord C, Risi S, DiLavore PS, Shulman C, Thurm A, Pickles A. Autism from 2 to 9 years of age. Arch Gen Psychiatry. 2006 Jun;63(6):694‐ 701. Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. J Consult Clin Psychol, 55(1), 3‐9. Myers S. and Johnson C.P. Management of Children with Autism Spectrum Disorders. Pediatrics 2007; 120; 1162‐1182. National Research Council. Educating Children with Autism. Washington, DC: National Academy Press, 2001. Ozonoff S, Young GS, Carter A, Messinger D, Yirmiya N, Zwaigenbaum L, Bryson S, Carver LJ, Constantino JN, Dobkins K, Hutman T, Iverson JM, Landa R, Rogers SJ, Sigman M, Stone WL. Recurrence risk for autism spectrum disorders: A Baby Siblings Research Consortium study. Pediatrics. 2011; 128: e488‐e495. Ronald A, Happe F, Bolton P, Butcher LM, Price TS, Wheelwright S, Baron‐Cohen S, Plomin R. Genetic heterogeneity between the three components of the autism spectrum: A twin study. J. Am. Acad. Child Adolesc. Psychiatry. 2006; 45(6): 691‐699. Rosenberg RE, Law JK, Yenokyan G, McGready J, Kaufmann WE, Law PA. Characterisitics and concordance of autism spectrum disorders among 277 twin pairs. Arch Pediatr Adolesc Med. 2009; 163(10): 907‐914. Strömland K, Nordin V, Miller M, Akerström B, Gillberg C. Autism in thalidomide embryopathy: a population study. Dev Med Child Neurol. 1994; 36(4): 351‐356. Sumi S, Taniai H, Miyachi T, Tanemura M. Sibling risk of pervasive developmental disorder estimated by means of an epidemiologic survey in Nagoya, Japan. J Hum Genet. 2006; 51: 518‐522. Taniai H, Nishiyama T, Miyahci T, Imaeda M, Sumi S. Genetic influences on the board spectrum of autism: Study of proband‐ascertained twins. Am J Med Genet B Neuropsychiatr Genet. 2008; 147B(6): 844‐849. Zecavati N, Spence SJ. Neurometabolic disorders and dysfunction in autism spectrum disorders. Curr Neurol Neurosci Rep. 2009; 9(2): 129‐136.