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Update on Research in Autism and Assessment of Needs for Teens to Adults with Developmental Disabilities. Lin Sikich, MD Associate Professor of Psychiatry Carolina Institute for Developmental Disabilities Director ASPIRE Intervention Program, University of North Carolina at Chapel Hill.
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Update on Research in Autism and Assessment of Needs for Teens to Adults with Developmental Disabilities Lin Sikich, MD Associate Professor of Psychiatry Carolina Institute for Developmental Disabilities Director ASPIRE Intervention Program, University of North Carolina at Chapel Hill
Disclosures: • I have research funding from NIH and Bristol Myers Squibb (medication and $9000 for subject reimbursement) for treatment research in autism, bipolar disorder and schizophrenia. • I have or am participating in autism & Fragile X clinical trials sponsored by Seaside, Curemark, Bristol Myers Squibb, Neuropharm.
Outline for today’s meeting • Review recent research findings in autism that are relevant for treatment (esp w/meds) • Opportunities to participate in research at UNC • Review recent research about outcomes for adolescents and adults with autism • Review recommendations for improving outcomes of individuals with autism • Get your input about the needs, barriers and beneficial factors that your child has experienced as s/he transitions to adulthood.
Risperidone helpful in children with DD Turgay et al., 2002
Antipsychotics not helpful in adults w/DD Tyrer et al., 2009 pl=29, risp=29, hal=27
Risperidone Effects on Irritability Rupp Study: McCracken et al., 2002
Improvement with Risperidone Rupp Study: McCracken et al., 2002
Risperidone reduces repetitive behaviors CY-BOCS Score Weeks of Treatment
Aripiprazole vs Placebo in Autism Each Aripiprazole group differs from placebo at p<.05; Weight gain was .3kg placebo, 1.3 -1.5 in aripiprazole groups over 8wks Marcus et al., JAACAP Sept 30, 2009 epub ahead of print
Flexible Dose Aripiprazole Trial (in press) Dose typically 10-15mg; 67% much or very much improved
Adding parent training to med increases benefits (RUPP, in press)
Citalopram is not effective in children w/ASD King, B. H. et al. Arch Gen Psychiatry 2009;66:583-590.
Citalopram does not repetitive behavior King, B. H. et al. Arch Gen Psychiatry 2009;66:583-590.
Fluoxetine study (unpublished currently) • No reduction in repetitive behaviors compared to placebo in children 5-17 with autism • No significant improvement in overall functioning as compared to placebo
Stimulants are sometimes helpful in ASD • 50% of 72 children responded • 20% could not tolerate methylphenidate • Best dose 17.2 mg is lower than in neurotypical children
MPH ↑ joint attention & affect regulation Jahromi et al, 2008 (RUPP)
ID of CNV genes may lead to new treatments • There is increasing evidence that about 10% of autism is caused by new mutations in an individual, new mutations also high in DD • Many of these mutations are in the same pathways that are important in brain development • That suggests that we may be able to find medicines that modify the pathway and modify the course of the disease
Treatments developed for Fragile X demonstrate this approach • In Fragile X, FMR1 gene is easily turned off • This leads to absence of FMR1 protein • FMR1 protein turns off protein synthesis shortly after environmental stimulation via the mGluR5 signalling pathway so specific functional connections between brain cells (synapses) form • If no FMR1 protein, synapses are malformed • Try medications that can influence response of brain to environmental stimulation
Summary of Studies • Year long monitoring in autism with no psychiatric medications • Open R-baclofen in individuals <18 with autism and disruptive behaviors • Functional imaging of the brain before and after treatment with aripiprazole in 10-17 yo’s with ASD and IQ >70 • SATIETY – weight, glucose and lipid monitoring in people within 2 wks of starting an antipsychotic • IMPACT – tx of antipsychotic-induced weight gain in 8-17 yo with mood symptoms or psychosis
Severity of ASD’s varies in 3 directions Milder Core Symptoms PDD-NOS Asperger’s . HFA . Fewer Assoc. Problems, Better Function Low IQ High IQ More severe Assoc. Problems, Worse function More Severe Core Symptoms
Adult Symptoms in ASDs (Seltzer et al., 2003) • 405 people (10-53) studied – 154 >21 • 45% no longer met full criteria for Autism • 12% had symptoms in 1-0 domains • 26% had much improved communication • 20% had improved socialization • 21% had fewer repetitive behaviors
Further improvement occurs over 4.5 yrs Shattuck et al., (2007)
Improvement in maladaptive behavior too • Socially offensive behavior 70% ->54% • Repetitive behavior 88% -> 68% • Withdrawal 79% -> 62% • Uncooperative 55% -> 45% • Aggression 44.4% -> 35% • Self injury 46% -> 36.5% • Property Destruction 38% -> 30%
Outcomes at age 24 (Eaves & Ho, 2008) Overall Functioning • 21% good or very good • 32% fair • 46% poor • 8% lived independently • 33% had at least 1 true friend • 31% had regular social activities
Factors that have been proposed to be important in successful college transition • Getting Disability Services – self advocacy • Counseling with explicit role plays & feedback especially about social • Executive functions • Breaking projects into manageable chunks • Organizational issues • Issues with overstimulation • Fit with individual’s strengths and interests
Factors that have been proposed to be important in successful work transition • Social functioning at work • Executive functions • Multitasking • Adapting to change • Sensory issues with overstimulation • Fit with individual’s strengths and interests
TEACCH Suggestions for lower functioning 1. Communication • Needs, wants, pain, illness • Makes choices 2. Independence (can follow schedule) 3. Hygiene 4. Express and Regulate Emotions 5. Able to tolerate free time/Leisure 6. Safety 7. Social interactions especially at work 8. Nutrition 9. Community skills (shopping, transportation, $) 10. Able to work (on task 45-90min; accept feedback)
Key Issues in the Transition-Self Advocacy Requires the ability to • Know when needs help • ID strengths & weaknesses • Ask for help • Evaluate if help is working • Ask for more help if it isn’t working
Key Issues in the Transition-Motivation Requires the ability to • ID goal in future • Break task into manageable steps • Confront anxieties
Key Transition Issue - Cognitive Flexibility Requires the ability to • Accept changes in schedule • Do something in way boss wants if different from own preference • Stop doing an activity if one of higher priority needs to be done • Recognize if strategy isn’t working and try another
Key Transition Issue - Generalization Requires the ability to • ID key similarities between different situations • Perform adaptive behavior in novel situation
Financial & Legal Issues • Consider applying for disability entitlements • Use Voc Rehab services • Planning for child’s residence & financial support after parent’s death • ? Guardianship • Healthcare Power of Attorney
What are your goals for your children? • Independence in Daily Living • Independence in Community Functioning • Living Situation • School • Work • Socialization
What do you feel are the biggest challenges your child faces in each area? • Independence in Daily Living • Independence in Community Functioning • Living Situation • School • Work • Socialization
Which of your child’s accomplishments give you the greatest satisfaction?
How satisfied are you with your child’s progress? • Independence in Daily Living • Independence in Community Functioning • Living Situation • School • Work • Socialization
Are there specific barriers your child has faced in these areas? • Independence in Daily Living • Independence in Community Functioning • Living Situation • School • Work • Socialization
Are there things that have helped your child meet his/her goals in these areas? • Independence in Daily Living • Independence in Community Functioning • Living Situation • School • Work • Socialization
What do you think would be helpful to your child in each of these areas? • Independence in Daily Living • Independence in Community Functioning • Living Situation • School • Work • Socialization
Do you think your child would benefit most from working on these issues 1:1 or in a small group or some other way?
Helping Children and Families Adolescent,School-age, and preschool PsychiatricIntervention Research and Evaluation 1-800-708-0048