AUTISM SPECTRUM DISORDER FROM THE PERSPECTIVE OF A

AUTISM SPECTRUM DISORDER FROM THE PERSPECTIVE OF A PARENT WHO HAPPENS TO BE A PEDIATRICIAN CLAUDE T. ASHLEY, JR. , M. D. , PH. D.

FACULTY DISCLOSURE I do not have a significant financial relationship with the manufacturers of commercial products and/or providers of commercial services discussed in this CME activity. I do not intend to discuss an unapproved/off-label use of a commercial product/device in my presentation.

AUTISM SPECTRUM DISORDER Prevalence • 1/166 nationally • 1/130 Alabama • Boys affected 4: 1 • 1/80 newborn males in Alabama •

AUTISM SPECTRUM DISORDER Autism • Pervasive Developmental Disorder • Asperger ‘s Syndrome • Rett’s Disorder • Childhood Integrative Disorder •

AUTISM SPECTRUM DISORDER - PROBLEMS • Diagnosis is based on DSM-IV psychiatric criteria, and so “autism” is classified as a mental health disorder • ASD diagnoses are not recognized by most third party payers as reimbursable • Office visits are time consuming and emotionally, cognitively, and physically draining • Pediatricians, who represent the medical home for ASD children, are struggling to accommodate these families • Parents feel lost and don’t know where to turn for help • There is a paucity of qualified therapy providers nationally • Private therapy can be cost prohibitive for many families • Because of these barriers to health care, it is estimated that less than 25% of children with ASD in our region of the state are receiving appropriate intervention

AUTISM SPECTRUM DISORDERS How do we overcome these formidable obstacles to care for ASD kids? 10 steps to becoming a hero for your kids with ASD

AUTISM SPECTRUM DISORDER Step 1: Change your perspective regarding “autism treatment” from paradox to paradigm

AUTISM SPECTRUM DISORDER “The medical establishment has until recently been “allergic” to autistic patients. This is partly because of a sense that this is a hopeless and incurable brain condition, partly because the patients can be difficult and disruptive, and partly (presumably) because of a visceral aversion to facing a brain and developmental disability. ” Martha Herbert, MD, Ph. D, Professor of Neurology, Harvard Medical School

OLD AUTISM DOGMA Genetic Predisposition Early Neuro-Developmental Changes Fixed Functional Deficit Hopeless Condition

NEW AUTISM PARADIGM Genetic Predisposition Epigenetic Phenomena Early developmental changes Early, Multi-disciplinary Intervention Neuronal Plasticity Improvement/Recovery Not “cure”

TODDLER AUTISM SCHOOL • Children’s Hospital of San Diego • Children with ASD were enrolled in preschool with neuro-typical peers • ASD children received intensive multidisciplinary intervention • Measurements of cognition, communication, and social interaction were evaluated at intake and exit Martin Stein, MD, Professor of Pediatrics, Director of Developmental and Behavioral Pediatrics, UCSD. Presenter at the New Horizons in Pediatrics Meeting, Atlanta, GA, 2008

AUTISM SPECTRUM DISORDER Parameters Measured Entrance Exit Notes Cognitive Outcomes Mean DQ 67. 2 74. 6 37% had normal DQ at exit (85 -115) Communicatio n Outcomes (Functional) Social Outcomes (Social Interaction) 50% 0% 90% 60% 80% with spoken language 35% engaged in reciprocal social interaction

AUTISM SPECTRUM DISORDER Step 2: “Always presume intellect” William Stillman. Autism and the God Connection. Sourcebooks, Inc. , Napeville, IL, 2006

AUTISM SPECTRUM DISORDER • Old School: 75% kids with ASD have cognitive deficiency – WRONG! • Use the example of Cerebral Palsy • In most cases, receptive language skills are intact while expressive skills may be lacking • In many of these kids, their memory is phenomenal • Expressive language/communication can be taught!

AUTISM SPECTRUM DISORDER Step 3: Take advantage of your limitations

AUTISM SPECTRUM DISORDER • ASD is a psychiatric diagnosis • Average wait time to see a psychologist in some areas of the country is 6 -12 months • Pediatricians should be the champions at diagnosing speech delay • If a child has 2 risk factors (includes older sibling with ASD, parental concerns, caregiver concerns), three simultaneous referrals should be made: 1) psychology, 2) early intervention, and 3) audiology (PIR Vol. 8, No. 3, 2008, 86 -95. – from ASDs surveillance and screening algorithm in the AAP ASD clinical report)

AUTISM SPECTRUM DISORDER Helpful Diagnostic Codes 783. 42 Delayed Milestones 315. 9 Unspecified Delay in Development 784. 5 Other Speech Disturbance 388. 40 Abnormal Auditory Perception, NOS 781. 8 Sensory Integration Disorder 780. 5 Unspecified Sleep Disturbance 307. 3 Stereotypic Movement Disorder 783. 40 Lack of Normal Physiological Development, Unspecified

AUTISM SPECTRUM DISORDER Step 4: Make parents your partners, not your opponents Step 5: Listen, Listen

AUTISM SPECTRUM DISORDER “Meanwhile, individuals with autism and their families are left to a large extent to their own devices. Treatments are not reimbursed, care is not coordinated, very few treatments have been systematically studied, medical problems are written off as the ‘autism’, and innovative attempts by parents to do whatever they can for their children are derided as desperate foolishness. ” Martha Herbert, MD, Ph. D, Professor of Neurology, Harvard Medical School

AUTISM SPECTRUM DISORDER • “ I told my pediatrician something wasn’t right, but he wouldn’t listen. ” • Regarding alternative treatments for autism, one survey showed that 92% of affluent parents had tried alternative treatments for ASD • “If you have met one child with autism, you have met one child with autism. ” • No one knows their child better than the parents, not even their pediatrician

AUTISM SPECTRUM DISORDER Step 6: Focus on treatment first, etiology second

AUTISM SPECTRUM DISORDER • As is typical of modern-day media, the focus has been on the negative, not the positive • The majority of kids with ASD get better with appropriate intervention regardless of severity or etiology • Likely many etiologies and autism subtypes • Bottom line is that the jury is still out; focus on what we can change not on what we can’t

AUTISM SPECTRUM DISORDER Step 7: Be a good Boy Scout

AUTISM SPECTRUM DISORDER • Be prepared • It is a bit hypocritical to label a parent as misinformed when in fact you are uninformed. • Be prepared to discuss the risks of biomedical interventions that parents may be interested in so as to ensure the safety of your patient (e. g. chelation therapy, hyperbaric chamber).

AUTISM SPECTRUM DISORDER Step 8: Have an open mind

“A WISE MAN KNOWS WHAT HE DOES NOT KNOW” – SOCRATES “Pasteur’s theory of germs is a ridiculous fiction. ” Pierre Pochet, Professor of Physiology Toulouse Medical Institute, 1872 “Thalidomide is an outstandingly safe medicine. ” Dr. Francis Key, Director, FDA, 1961 “Add to the list of proven false medical theories the notion that smoking causes cancer. ”

AUTISM SPECTRUM DISORDER • Example: GF/CF diet • Addressed in AAP Autism Spectrum Disorders Guidelines (Contemporary Pediatrics, Vol. 25(10), pp 42 -67, 2008) as inadequately evaluated; preliminary or mixed results • ASD child on diet, doing better, is there potential harm? • Watch Calcium, Vitamin D

AUTISM SPECTRUM DISORDER Step 9: Be an advocate for the child Step 10: Never give up

SUMMARY 1) 2) 3) 4) 5) 6) 7) 8) 9) 10) Move from paradox to paradigm Always presume intellect Take advantage of your limitations Make parents your partner, not your opponent Listen, Listen Focus on treatment first, etiology second Be a good Boy Scout Have an open mind Be an advocate for the child Never give up