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Autism - What Now?

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  • Research has shown that social skills training with adults does not generalize as well as with other children.
  • Research

Transcript

  • 1. Autism - What Now?
    Robin Epstein M.D.
    University of California@ Irvine
  • 2. Create progress
    Develop a team
    YOU are the leader!!
  • 3. Take Inventory
  • 4. General Considerations
    No medical cure for autism
    Educational and behavioral therapies are the first line of intervention
    Medical interventions target intolerable or severe behaviors that do not respond to therapeutic interventions and thereby impede the child’s progress
  • 5. Elements of Care Plan
    Medical diagnosis and evaluation
    Educational Plan
    Language intervention
    Occupational/Physical therapy
    Social Support
    Family support –(Lecavalier) 58% of mom report clinical stress. 80% divorce rate.
    Psychological
    Medication
    CAM – Complementary and Alternative Medicines
  • 6. Take Care of Yourself
    Breathe
    Grieve
    Anger
    Educate yourself
    Support systems
    Join with your spouse
    80% divorce rate
    Mental health support
  • 7. Heterogeneity–Every Child is Unique!
    Intellect – Up to 50% MR, but many gifted (25%).
    Use of language –nonverbal, nonfunctional to superior, but nonsocial
    Aberrant behaviors
    Levels of anxiety
    Personality
    Superimposed physical and neurologic disorders
  • 8. Assess Strengths and Weaknesses
    Underlying intelligence
    Memory
    Level of functioning (acheivement)
    Receptive and Expressive Language
    Pragmatic language
    Mood lability
    Overly social
    Attention
    Activity level
    Personality
    Anxiety and OCD behavior
    Perspective-taking
    Abstract thinking
    Sensory/motor issues
    Problem-solving
  • 9. Create Goals
    Be reasonable
    Examples:
    Eye contact
    Try new sports on the playground
    Dress by self
    Say “hi” to classmate without prompting
    Create an imaginary story by himself
    Try new foods
    Constantly reassess and anticipate
  • 10. People as Resources
    In school (public)
    Private
    Teacher
    Sp/Lang therapists
    Resource Specialist(RSP)
    Occupational Therapist (OT)
    School psych/counselor
    Principal
    Speech Therapy/Social skills
    OT
    Psychologist
    MD
    Educational specialists/tutors
    Advocacy
    Friends and family (+/-)
  • 11. Books as Resources
    Attwood
    Michelle Garcia Winner
    Carol Gray
    Skillstreaming
    Hawthorne Press
    How Well Does Your IEP Measure Up
    Asperger Syndrome- A Practical Guide for Teachers
    Amelia Bedelia
    Aesop’s Fables
    Idioms
    Overcoming Autism
    Koegel
  • 12. Items as Resources
    Games – Pictionary, Simon, Taboo, Stare, Apples to Apples, Bingo
    Trampoline
    Weighted Vest
    Chew stick
    Sensory balls
    Tape recorder
    Computer
    Teacher Supply
    Keyboarding programs
    Dragon dictate
    Keep a personal hanbook
  • 13. Language Therapy – School and Private
    Speech therapy by 2 ½ has a 70% improvement rate. (McGee 1999)
    AB88 – In California insurance should cover speech when medically indicated for autism.
    Pragmatic language (social language) – Problem solving, Social stories
  • 14. Occupational Therapy
    AB88 applies here as well.
    Fine motor – buttoning, zip, lock, shoes are all medically necessary! Writing is school responsibility.
    Balance and safety.
    Oromotor – If FTT or anemic, then medically necessary.
    Children learn by approach to novel situations
    Sensorimotor processing is everywhere!
  • 15. Social Skills
    At school – lunch bunch, social skills groups, peer projects, recess, peer buddies.
    Community social skills group – must be at patient level, hard to find, but vital!
    Community camps and challenge teams
    Playdates and siblings – Skills streaming and Michelle Garcia Winner.
  • 16. Family and Psychological
    Parent groups – SEEPAC, Aspergers group
    Psychologists specifically trained to work with autistic children
    Teaching imaginary play and flexibility
    Flexibility and areas of grey
    Depression and anxiety
    Working with family on toileting, sleep, transitions, sexuality
  • 17. Medical
    PE – Dysmorphology, Neurocutaneous, Reflexes
    Labs: High resolution karyotype, DNA fragile X, acyl carnitine, serum AA, urine OA. Consider Pb, TSH, CBC, LFTs, subtelomeric evaluation, FISH for PWS, WS. MRI not usually indicated. Consider EEG-25% abnormal
    Not indicated: allergy tests, hair analysis, chelation, gut permeability, stool analysis.
    Genetics – Counseling!! Recurrence 7% Even higher for associated issues – ADHD, lang delay, OCD, social issues
  • 18. Creation of an educational/behavioral program
    The majority of interventions should be provided by -
    Under age 3 regional center OR
    Over age 3 the local school district
    Conflict of interest (like an insurance co)
    Educational model
  • 19. Intervention Model
    How much intervention is enough?
    Few controlled studies -Unethical, difficult
    Over 150 uncontrolled studies
    Some programs provide a few hours of speech and others provide 40+ of intensive intervention.
  • 20. A World of Possibilities
    TEACCH
    NPS – nonpublic schools
    Floortime
    Speech therapy
    SMI – sensorimotor integration
    Facilitated communication
    PECS- picture exchange
    ABA/IBI –AAN – 5 studies, overall positive, but questionable evidence
    PRT-pivotal response
    SDC – special day class
    1:1 aide
    Full inclusion
    Reverse Mainstreaming
  • 21. Behavioral interventions
    Landmark study of early intervention
    Lovaas 1987 UCLA –ave age 2.8yrs, 40hrs/wk, 1:1 . 2yrs led to 50% “recovered”.
    Lots of methodological problems
    Benefits have been shown in similar studies
  • 22. Educating Children w/Autism 2001 – Nat’l Research Council/ NASMetanalysis, consensus, Adopted by AAP,AAN, AACAP
    EARLY INTERVENTION WORKS!!!
    Key features –
    -Early (bet 3&5) & intensive = At least 20 hrs/wk
    -Focus on social, communication, and behavioral deficits
    *Behavioral vs developmental
    *1:1 vs group and home vs school
  • 23. Howard – 2006 - UCLA
    Typ Pub School Spec Ed
    Early Intensive BehTx
    Lovaas modified #21
    30-40 hrs/wk
    Over 3 yrs starting at age 3
    More likely to be included w/ or w/o aide (6 fully included)
    Higher IQ/ higher adaptive levels – significance?
    Variable #21
    Intervention over 3 yrs starting at age 3
    1 fully included
    Most research supports 1:1 behavioral program
    Cost prohibitive
  • 24. Classroom Program OptionsSome examples:
    Full inclusion – private services only
    Full inclussion – RSP, Sp/lang, OT, Social
    Full inclusion – Aide + above (General aide vs DTT aide)
    Special Day class mixed with Typical Peers
    Special Day Class – Mild moderate vs Autism program
    Special Day Class – 1:1 or 1:2
    County – SELPA programs
    Nonpublic School – Prentice, CDC, Mardan, New Vista
    Residential
  • 25. Discussion of an OC Preschool Program
  • 26. Medications
    Try behavioral and educational interventions first.
    Medications are a last resort
    Necessary in 2/3rds of cases
    2 or more meds needed 25% of the time
    Medications don’t treat autism
    Medications treat target symptoms associated with autism
    Only FDA approved medication is Risperdol
  • 27. Disadvantages To Using Medication
    Limited research in children
    Negative findings from research, not published
    Long term effects of many medications are unknown
    The effect of psychotropic medications on the developing brains are unknown
    The neurochemical basis of autism is unknown
    Medication use in this population is almost always chronic
  • 28. Candidate Medications
    Typical antipsychotics
    donazepil/memantine
    buspirone
    naltraxone
    Mood Stabilizers
  • 34. Target Symptoms
    Attention/Hyperactivity
    Stimulants
    Atomoxetine
    Atypical antipsychotics
    Anxiety/Depression/Inflexibility/OCD
    SSRIs
    Atypical antipsychotics
    Agression/Agitation
    Atypical antipsychotics
  • 35. Complementary and Alternative
    Hyperbaric oxygen
    Chelation
    Secretin
    Stem cells
    Neuron injections
    GFCF diet
    Chiropractics
    Herbals
    Antifungals
    Vitamins
    Allergies
    Heavy metals
  • 36. CAM
    • Secretin– the most studied drug. N=500. No benefit!
    • 37. Facilitated Communication – most well controlled research = negative results
    • 38. Auditory Integration – all reviews of research reveal negative results
    • 39. Gluten/Casein-free– 29 studies, only one showed benefit and that was with behaviors only, another 3 showed benefit but children had begun intensive intervention programs simultaneously.
    • 40. B6 and Mg – research shows no benefit and may cause polyneuropathy
    • 41. Chelation – no benefit, 2 US deaths
    • 42. *Omega 3 FAs– Positive effect on cognitive abilities
    • 43. *SMI– Improved motor skills
  • CAM – Omega 3 FAs
    Oxford-Durham Study 2005 – Dev Coord D/O. 117 children. Showed measurable improvements in reading, spelling, behavior over 3mo. Crossover as well.
    Pilot study in Vienna (Amminger 2007) 13kids 1.5g/d improved beh in autism
    Studies have shown improved attention ADHD
    Last month – pregnant woman eating fish high in O3FA – children have higher lang scores
  • 44. Complementary and Alternative Approaches
    Quackwatch.com
    There is no quick fix
    Some support for the use of Omega 3 FAs
    If it doesn’t hurt and is not too expensive go ahead, but don’t forego proven help to pay for the unproven “cure” of the month
  • 45. Create Your Team
    People who understand your child
    Progressive out of the box thinkers
    No obstructionists
    You can exclude people from your IEP team
  • 46. Think Ahead - Anticipate
    • Areas of vulnerability:
    • 47. Reading
    • 48. Reading Comprehension/Math work problems
    • 49. Transitions – K-> 1st. 3rd-4th. Middle School. Transition to adulthood.
    • 50. Social challenges – 4th Grade, Middle School, Trans. to adulthood.
    • 51. Written expression
    • 52. Abstract Thinking
    • 53. Driving and Independent living
    • 54. Cognitive delays
    • 55. Fine and gross motor issues
  • Take Care of Yourself/Family/Future
    Reality Check
    Every family has its own rhythm and limits. Listen to the rhythm!
    Financial Security – Find your comfort zone. Do not overextend. Special needs trust. Consult and attorney.
    Other children
    Everyone’s mental health
  • 56. Conclusion
    • Know your child
    • 57. Create a team
    • 58. Be creative
    • 59. Utilize interventions
    • 60. Early intervention leads to huge improvements in quality of life for child and family. It can reduce costs by 2/3 lifelong.
    • 61. Comprehensive care includes behavioral support, sp&lang, social, and occupational therapies.
    • 62. Medication can be used to improve secondary/severe symptomatology.
    • 63. Monitor usage.
    • 64. CAM can be enticing, but research first!
  • National Academy of SciencesCommittee on Educational Interventions
    “The available research strongly suggests that a substantial subset of children with ASD are able to make marked progress during the period that they receive early intervention and that nearly all children with ASD show some benefit.”