Autism - What Now?

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. ABA/IBI –AAN – 5 studies, overall positive, but questionable evidence PRT-pivotal response SDC – special day class 1:1 aide Full inclusion Reverse Mainstreaming TEACCH NPS – nonpublic schools Floortime Speech therapy SMI – sensorimotor integration Facilitated communication PECS- picture exchange A World of Possibilities

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. Typ Pub School Spec Ed Howard – 2006 - UCLA 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 • SSRIs • Stimulants • Atypical Antipsychotics • Atomoxetine • Alpha 2 agonists • Beta blockers • Typical antipsychotics • donazepil/memantine • buspirone • naltraxone • Mood Stabilizers

29. Target Symptoms • Attention/Hyperactivity • Stimulants • Atomoxetine • Atypical antipsychotics • Anxiety/Depression/Inflexibility/OCD • SSRIs • Atypical antipsychotics • Agression/Agitation • Atypical antipsychotics

30. Complementary and Alternative • Hyperbaric oxygen • Chelation • Secretin • Stem cells • Neuron injections • GFCF diet • Chiropractics • Herbals • Antifungals • Vitamins • Allergies • Heavy metals

31. CAM • Secretin– the most studied drug. N=500. No benefit! • Facilitated Communication – most well controlled research = negative results • Auditory Integration – all reviews of research reveal negative results • 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. • B6 and Mg – research shows no benefit and may cause polyneuropathy • Chelation – no benefit, 2 US deaths • *Omega 3 FAs– Positive effect on cognitive abilities • *SMI– Improved motor skills

32. 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

33. 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

34. Create Your Team • People who understand your child • Progressive out of the box thinkers • No obstructionists • You can exclude people from your IEP team

35. Think Ahead - Anticipate • Areas of vulnerability: • Reading • Reading Comprehension/Math work problems • Transitions – K-> 1st. 3rd-4th. Middle School. Transition to adulthood. • Social challenges – 4th Grade, Middle School, Trans. to adulthood. • Written expression • Abstract Thinking • Driving and Independent living • Cognitive delays • Fine and gross motor issues

36. 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

37. Conclusion • Know your child • Create a team • Be creative • Utilize interventions • Early intervention leads to huge improvements in quality of life for child and family. It can reduce costs by 2/3 lifelong. • Comprehensive care includes behavioral support, sp&lang, social, and occupational therapies. • Medication can be used to improve secondary/severe symptomatology. • Monitor usage. • CAM can be enticing, but research first!

38. 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.”