Annual Meeting Day 1, August 21, 2015

 
No one gives you any sympathy when you tell them you have to go to the Grove Park Inn. “But I’ll be in meeting rooms all day,” you say. Eyes roll. “But I’ll be taking notes. I’ll miss my kids. I hate the sight of mist-enshrouded mountains and all those birds and flowers, and I have a phobia of blue ridges…” Yeah, okay, it was nice. And here are the notes.

My usual disclaimer: I just do this to stay awake and remind myself what I learned. I am not a professional note-taker, and if I get up to refill my coffee I might miss something. If you are one of the speakers, please email me with any errors you see in these notes. As for your photos, I'm sorry. They're awful. I just cannot do an Android phone, okay? If you are a reader, please let me know if I’ve made any egregious errors in spelling, grammar, or facts. If you are from the Huffington Post, please contact my agent, we’ll talk.

Steve Wegner, MD, MBA

Working Towards a Provider Led Entity (PLE) that Works for Children and Their Medical Providers

• We are one of the few states that do not contract with comprehensive Managed Care Organizations (MCO’s). There are billions of dollars to be made.
• Clinically Integrated Network (CIN) provides an entity that allows doctors to work together without violating Federal Trade Commission rules.
• CIN’s must enforce quality control standards, must be integrated.
• PLE: Provider should own it, hold a controlling interest in it, form the majority of the board.
• Payment models: Full capitation, partial capitation, shared savings, bundles/episode payments, or fee for service.
• Cost controls: Care coordination, physician-led evidence-based protocols, prior approval.
• Patient Centered Care Management: simplest, no risk
• Coming soon: Hybrid model: Some MCO’s, some PLE’s, not exclusive to a region. Risks and profits will be shared, networks and practices will be integrated. PLE will be sort of a combination of an insurance company and a CIN. Few examples of this.
• Community Physicians Network of North Carolina: a CIN to support independent providers in North Carolina. To start with primary care providers. Will contract with CCNC for case management, data.
• Will collaborate with other networks, not exclusive.
• Will participate as a provider led entity.
• Coverage will be statewide.
• Over 500 providers have signed a Letter of Intent to work with PNNC.
• Challenge: addressing the needs of pediatric and adult providers simultaneously. Organization now has two separate branches. Plan is to set up a separate pediatric CIN within the larger framework.
• Why have a children’s ACO? To compare ourselves to other pediatricians, not to adult providers. To utilize children’s protocols and QI measures. Because children’s care is uniquely dependent on large hospital systems for specialists and hospitalizations. Because children depend on us for medical homes (The Last Mile).

Debbie Ainsworth adds that this week is the week to talk with your legislator about ensuring that Medicaid reform in North Carolina involves Provider Led Entities and accounts for children’s needs. You should have gotten an email last week about these issues.

Jane Foy, MD, Chair, AAP District IV

AAP District IV Report

• Dr Foy carries the concerns of the member chapters to the Board of the American Academy of Pediatrics.
• Notes that Fostering Health NC program has been unique, a model for other states.
• Notes that our Practice Managers Section does amazing work for practices in North Carolina.
• Notes that our cooperation with NC Medicaid is incredibly positive and productive.
• Dr. Errol Alden has retired as CEO of the American Academy of Pediatrics after many years.
• Dr. Karen Remley is our new CEO, from Virginia. Pediatric ED specialist, has an MBA, has worked in state government, insurance industry.
• Plans are underway to construct a new AAP Headquarters near O’hare International Airport in Chicago. Building will be green (in the environmental sense).
• Membership growing, 64,000 strong, now including Physician Assistants.
• A new task force has been formed on practice transformation in pediatrics to provide support and technical assistance during this time of rapid change. Dr. Jim Perrin is chair.
• Successful work combatting vaccine exemptions in states, especially in the wake of Disney Land outbreak. Pediatricians would like to see a broader range of options to respond to vaccine refusal in practice.
• AAP working with the influx of unaccompanied minors immigrating to the US.
• Child Poverty: this seems like a big challenge to take on, but Pediatricians really do have tools at our disposal to help. Dr. Benard Dryer is taking on this challenge for the academy, and we will be hearing more about what we can do. Only 21% of pediatricians feel that we are currently equipped to address poverty in our practices.
• CHIP reauthorization for the next 2 years was a huge accomplishment for the Academy. Funds a change in federal matching rates for CHIP-enrolled children.
• Top federal advocacy topics: Access to care; funding for children’s priorities at NIH, CDC, HRSA, FDA, etc.; e-cigarette regulations…
• AAP Federal Affairs website makes it incredibly easy to contact your legislators about pediatric issues.

Dr. Foy receives the David T. Tayloe, Sr. Award for Outstanding Community Service, presented by Dr. Julie Linton

Susan Mims discusses Annual Fund drive.

• Dues alone do not cover the costs of providing advocacy, education, health promotion through the NC Pediatric Society - donations are critical!
• You can go right to ncpeds.org to donate!

Adam Svolto, MPA

Fostering Heath NC Initiative: Improving Health Outcomes for Infants, Children, Adolescents, and Young Adults on Foster Care

• Children in foster care have poor health outcomes with disproportionately high rates of physical, dental, and mental health problems
• Often have inaccurate, incomplete medical records
• Costs run 3x those for other children in the Medicaid population
• Mission was to generate measurably improvements in health outcomes for NC foster population, led by the NC Pediatric Society with grant partners including NC Office of Rural health and Community Care and the Duke Endowment
• Developed policy with the help of a 40-member multidisciplinary team, strong support from Community Care of NC
• Informed by research showing that the medical home model, couples with care coordination, improves healthcare for children in foster care.
• Based on AAP Standards of Care for children and youth in foster care.
• Children in foster care need to be seen within 72 hours of placement to assess acute care needs, then to get a comprehensive visit within 30 days of placement, followed by a follow-up visit wtihin 60-90 days of placement. 
• Ongoing wellness exams are monthly at 0-6 months, q 3 months from 6-24 months, and twice a year from 2 to 21 years old.
• Model on the ground combines the efforts of local DSS office, CCNC network, and primary care clinician in shared decision-making and information utilization.
• There is now a CCNC Provider Portal to allow providers to share information about children in foster care. Portal allows providers to upload documents for when patients move placements or even move across the state.
• Information also includes AP best Practices on screening and coding.
• 44 practices, 28 counties participating in the FHNC intiative, 7 counties using Health Summary Forms, 2 counties have established Letters of Agreement, with 9 more pending.

Julie Linton

Immigrant Child Health

• Family detention is a hot topic in immigrant child health
• Know that the AAP has an immigrant child health toolkit.
• Family detention keeps families in prison-like conditions in the US.
• There are 3 active centers.
• Used to deter families from crossing into the US from Central America
• Families are often fleeing trauma, abuse.
• Children may be kept at arm’s length from mothers at all time, may have to ask permission to use the bathroom, may have very limited access to health, legal, and social services. “The walking wounded.”
• Trend is now away from detention, but still over 2000 families are in detention. Declared unconstitutional in 2015 to use detention as a deterrent to immigration.
• Federal district court ruled this year that families and children should be released, but so far they have not been.
• Detention places children and families at risk of physical and mental trauma, inhibits access to standards of medical and mental health care that we endorse. Remember, these are children.
• Ask families about their experience, and explain that you are not reporting them to the police.
• Legal Aid of NC in Charlotte offers a Battered Immigrant Program, also the Elon Law program.
• Screen for social emotional and mental health issues, refer to trauma-informed therapy.
• The toolkit now includes a checklist for clinical care guidelines, a new section on mental health, and a clinical background update.
• Consider joining the AAP Immigrant Health Special Interest Group within the Committee on Community Pediatrics.

Mary Ann Burghardt, MS, RD, LDN

WIC Food Package Update

• Breastfeeding Support remains the primary focus of the WIC program
• About 59% of WIC moms initiate breastfeeding.
• White potatoes are now included on the voucher, also yogurt as a milk substitute, in 32 ounce containers with less than 40g of sugar per container, no artificial sweeteners.
• Whole wheat pasta has also been added for the voucher program, included in the allowed 2 lbs. of whole grains per month
• On October 1 contract changes from Gerber to Abbott: Similac Advance Stage 1 and Abbott Similac Soy Isomil. Standard issue will be Similac Advance Stage 1 powder.
• WIC will no longer provide Gerber Good Start Gentle, Soothe, or Soy
• Concentrate can be requested by parent, and ready-to-feed can be requested if there are problems with water, ability to mix formula.
• WIC will NOT provide any 19 kcal/ounce products, including Similac for Spit Up, Similac Sensitive, and Similac for Comfort. Also will not cover Similac for Supplementation.
• Cow’s milk should NOT be introduced before child’s first birthday. This is a change from the prior birthday minus 15 days practice.
• Formula should be at least 20 kcal/ounce and iron-fortified.
• Formula must meet Infant Formula Act of 1980 (1986 revision) guidelines for nutrients.
• For standard milk/soy based formulas, WIC may NOT issues formulas from other companies. This means, for example, that Enfamil AR will not be available under WIC.
• Please alert all of your staff to these changes and support families in the transition.
• There is still a full complement of exempt products available by Rx, including Extensive HA and alpha amino products. Exempt products are not limited to Abbott brands, include high-calorie formulas.

Betsy Tilson, MD , Chuck Wilson, MD

Updates from Academic Centers and Hospitals

• Bob Schwartz announces the development of a new interest group in pediatric obesity.
• Ann Reed from Duke, new Chair of Pediatrics. Now department chairs are meeting together to improve care of children across the state. Decided to focus on access to subspecialty care. Duke has been expanding their solid organ transplant team specifically for liver and kidney transplants. Also working on a pediatric outcomes institute to look at best practices for the state and the region and help disseminate them. Also focusing on how to get complex patients back into the community with excellent transitional care.
• Betsy Tilson from Wake Med. Endocrine and GI clinics are expanding. Working on expanding PPP clinic. Expanding Wake Key ACO. Building academic ties to UNC and Duke, also Campbell.
• Susan from Carolinas Medical Center. Lenny Feld has moved to Children’s Hospital of Miami. Searching for new CEO, but duties are being shared by 3 people right now. Working on several virtual care projects. Asthma care group demonstrating remarkable improvements in outcomes.
• Chuck Wilson, ECU. Brody School of Medicine and Department of Pediatrics are thriving. New Chair has been selected, but waiting to announce until finalized. CHACC program has been very successful in improving care for children with complex needs.
• Kenya McNeill-Trice, UNC. Julie Byerly is now Dean of Medical Education, Wesley Burke is now Executive Dean of the medical school. New curriculum is translational, brings students into the clinical setting much earlier. Opening fellowships in ID and GI. Multiple new division chiefs on faculty. New child abuse specialist.  Newly opened Hillsboro medical complex for children and adults.
• Susan Mims, Mission Children’s. PICU is under renovation, pediatric unit newly renovated. New geneticist on staff, new hospitalist, new audiologist. Working on neonatal abstinence syndrome care model with Duke Endowment grant. Western NC Pediatric Collaborative working on obesity, ADHD quality programs. Now educating 4 medical students on rural track, hoping to educate providers for rural communities.
• Katherine Poehling, Wake Forest. Adding multiple specialists, new faculty.
• Novant: now part of the St. Jude’s network, can provide their protocols and care.

NC Department of Health and Human Services, Division of Medical Assistance Updates

Beth Daniel

• Working on lead testing in the office, Medicaid bulletin is coming with compliance information.
• HPV 9 is reimbursing higher than cost right now. HPV 4 may not be, still working with the general assembly.
• Children under age 6 are joining Health Choice, which is causing some payment glitches, but these will be fixed.

Roger Barnes, Finance Director of DMA

• Some vaccine codes were paid at $6 less than they should have been, these will be re-processed eventually, but there is still some computer work to do to make sure these payments get properly paid soon.
• CMS is having to go back and make sure that everyone who self-attested for parity payments was actually entitled to them, funds may be recouped from providers who did not actually meet the criteria for these payments.
• The 1% clawback passed by the NC legislature has not yet been implemented, because CMS has not approved it. If CMS does approve it, the clawback will be processed.
• RA will be printed with larger, darker type, with fewer pages. Will be provided in Excel format so that we can better track our data and manipulate it, analyze it.
• ICD-10 is ready to launch on October 1 of this year. Test results so far have been good.

Gerri Mattson, Linda Holmes, Alan Dellapenna, Jr.

Public Health Panel

Injury & Violence Prevention Branch

• Performs injury epidemiology, policy, coordination with partners on evidence-based practice
• Leading causes of death in NC are injury and violence: suicide, motor vehicle crashes, unintentional poisoning, unintentional falls…
• Only MVA and pedestrian accidents are higher in NC than nationally of causes of childhood deaths, but MVA is falling.
• Poisoning is on the rise, mainly from opioids, mostly Rx but also heroin
• National Violent Death Reporting System. About 2000 homicide, suicide, firearm deaths per year in NC.
• Policy: ATV’s, fireworks, motorcycle helmets, naloxone access, Operation Medicine Drop
• NC now has the strongest vapor cigarette laws. Nicotine poisonings have risen by 1,613% over 3 years.
• New standards for child seat fitting, can get free educational materials.

Immunization Branch

• Administering Vaccines for Children program
• Immunization conference in July, record attendance of over 850 people, next one in 2017.
• Educational training programs planned around the state.
• New rules went into effect July1. Pneumococcal and meningococcal now required.
• New vaccines are in the North Carolina Immunization Registry.
• NCIR will now require gender, responsible person to be entered.
• 2015 saw a record number of reported pertussis cases, most since 1955.
• Question response: yes, HPV 4 and HPV 9 can be interchanged. Still not FDA approved over age 15, but ACIP recommendations trump FDA, so you can still give the vaccine over age 15 based on your medical judgement.
• Question response: Interface exists with Vidant Records now. Working on Epic through Duke and Wake Forest, talking to UNC about interoperability, but there is a lot of work that needs to be done.

Public Health

• Office on Disability and Health trying to improve access to care for children with disabilities. They can do a non-punitive survey of how accessible your office is for children with disabilities.
• Early Hearing Detection and Intervention Program (EHDI): Goal is to have screen by 1 month, re-screen if needed by 3 months, receiving services by 6 months.
• School Nurses. Now have epipen for children who have not yet been diagnosed with anaphylaxis. Working on getting nurses of charter schools as well. Also working on care and case management for children with special needs.
• Critical Congenital Heart Defects screening and reporting. Online database for reporting as http://cchd.pqcnc.org. Each hospital needs someone to be designated to report screenings.
• Health Care Transition with all adolescents: a continuum starting at age 12. Does your office have a policy to help children learn self-management, do you help with finding an adult provider?
• Initial goal: have child able to understand and communicate information about his/her health starting at age 12.

Scott Sinclair, Vice President NC Peds, Membership Update

• New website: Your membership. Will provide a significant upgrade on several levels.
• Will have single data stream, which will help staff manage membership for NC Peds
• Members will be able to create a personal profile
• You’ll be able to connect on community forums for members with similar interests, including Advocacy.
• Find a Doctor feature!
• Career Center for job openings, listings

Sharon Humiston, What’s My Legacy? Increasing HPV Vaccination Towards Better HPV Completion Rates

• Please take today’s materials and train your co-workers and even other primary care providers in your communities.
• Contact at sghumiston at cmh dot edu (written this way to keep Dr. Humiston from being spammed)
• The problem with immunization: when you do it right, no one knows, because nothing happens. No one thanks you for their not getting HPV. 
• Physicians’ perspective. Genital warts have increased in frequency, only pesky for us. But in Gyn, these are the most common infections they see. Cervical cancer is the 3rd most common cancer in the world.
• In 2011, 4000 people died in the US from cervical cancer.
• Treatment for people who survive also caries significant morbidity, including risk for infertility, preterm birth.
• By 2020, the rates of oropharyngeal cancers are projected to surpass rates of cervical cancer.
• Usually OP cancer is discovered when a man finds a lump in his neck, by definition already has spread.
• Vaccine rates are improving, but the way we recommend it makes a difference. HPV is not some different vaccine, for an oh, by the way, it’s among the recommended vaccines for this visit, period.
• Providers who roll in the HPV with the other vaccines get a much better acceptance rates than ones who treat it as some different kind of creature in their discussions.
• Ask if parents have questions, make sure you understand what those questions are.
• If a parent seems to be hesitant, acknowledge the concern. Mention that we share a goal of keeping the patient safe for life. See if you can find a plan that is acceptable to the parent.
• Consider motivational interviewing model. Find something that parents can say “yes” to. Such as, “If I can show you information about vaccine safety, would that make you feel more comfortable?”
• Debbie Ainsworth: make sure your staff are not undermining your message when they discuss HPV vaccine. Ask your staff how they are presenting the issue.
• One strategy is give dose #1 at 11 years, get at least one booster, and then plan on #3 at the 12 year visit.
• Question: not clear that 2 doses will be adequate for protection. Probably better than 1, but not at all clear that nearly as good as 3.
• Question: Gardisil safety of vaccinated females versus unvaccinated over 5 years: no increase in anaphylaxis, seizures, blood clots, Guilain-Barré, appendicitis. Further studies show safety for blood clots, autoimmune disorders, multiple sclerosis. Positive only for skin infection at the injection site, vasovagal syncope.
• Question: it’s not clear that having a higher antibody level (as in younger vaccine recipients) means being more protected from the disease. The importance of giving the vaccine early is that it doesn’t work after exposure. The HPV virus can get under your fingernails, you don’t have to have sex to be exposed.

Mark Del Monte, JD, Director, Department of Federal Affairs, Department of Public Affairs

Beyond Coverage: Public Policy Approaches to Child Health

• Immunizations. Disney Land outbreak led to a national conversation about vaccines and public health. Very productive for us.
• Now Donald Trump comes out in favor of vaccine-autism link, so don’t get complacent
• Practice transformation. Not clear what the financing model and care model is going to look like for pediatrics. Young pediatricians are optimistic that the new models will provide better, more comprehensive care.
• Presidential politics: primaries are a long way off. What are the prospective candidates saying about children? Notice that opposing the Affordable Care Act seems to be a Republican talking point, but not an important one.
• For 2015 so far, child health seems to be faring well in Washington. Supreme Court has upheld the Affordable Care Act two times now. This leaves little uncertainty about the basic structure of the Affordable Care Act.
• No Child Left Behind was reauthorized, with health education and health access, concerns for children with special needs included. But the House and Senate versions will be tough to reconcile.
• BUT the budget picture for kids is dire at this point due to the sequestration cuts, will affect NIH, HHS, FDA, CDC, EPA, HRSA, Education, and USDA.
• Healthy Hunger Free Kids Act was very positive for child nutrition, improved school meals for children across the country. Now facing opposition from some in the processed food industry. We will need to advocate to preserve this act.
• Access to care. From 1997 to 2013 the line is flat, at around 15% of Americans not covered by insurance, but much better for children under 18, with 92.8% of children covered with health insurance in 2013, the lowest number ever recorded. This is really good news!
• The lesson: large, social structural problems for children can be solved by intervening. Remember that we have the power to help children beyond the exam room.
• Who is left to cover as of September 2014? Most are in families with less than 138% of the federal poverty level, which means they could be enrolled in Medicaid. Most in the South, majority in states that didn’t expand Medicaid. The challenge is not eligibility but enrollment.
• CHIP reauthorization (MACRA) was critically important: generous to states, ensures that children get coverage they need. Currently stable through 2017. Passed even this year with broad bipartisan support.
• Lessons learned from CHIP: AAP worked on this issue for 2 years prior to the vote, educating politicians even as they came and went from Washington. Policy rationales were sound. AAP coordinated with multiple coalitions.
• How can you stand politics? You have to. The kids need us there.
• Next job for us: focusing on quality, payment, workforce, state focus
• Payment is critical. When Medicaid rates went up, access to care improved for children. Unfortunately, the rates have now gone back down, and Medicaid pays on average 70% of what Medicare pays for the same service. Some states just continued the payment rates from the first two years of the ACA, including Alabama.
• E-cigarette regulation needs to be high on our agenda. States are seeing massive increases in the numbers of liquid nicotine poisonings, one fatality so far in New York state. Hope to accomplish regulation by the end of this congress. Child Nicotine Poisoning Prevention Act of 2015 (HR1375)
• Another bill (HR1462/S799) is designed to address neonatal abstinence syndrome.
• Pediatricians as messengers. We have a powerful voice with policy makers. Nurses and MD’s are rated as #1 and #2 for honesty and ethical standards.
• There will be opportunities presented at the NCE in DC this year, October 24-27.

Adrienne Coopey, DO, Child and Adolescent Psychiatry, Missions Children’s

Adverse Childhood Experiences in Practice: Opening Pandora’s Box

• NC Institute of Medicine put out a report on ACES in March of this year.
• Dr. Vincent Felitti started ACES study as part of his obesity clinic in 1985 when he noticed that half his patients were dropping out. He decided to bring people back and try to determine what happened.
• His patients were generally born at a healthy weight, then gained rapidly, and whatever they lost in weight tended to return back to baseline.
• He set up a list of questions to ask them about weight at various times in their lives: birth, school. One question: “How much did you weigh when you became sexually active?” One patient answered 40 lbs. Because she was 4 and sexually abused. He added questions about child sexual abuse and found that this population was alarmingly over-represented in terms of child sexual abuse.
• ACE study included 17,421 patients between 1995 and 1997. Joined with Dr. Robert Anda to quantify adverse childhood experiences.
• Three categories: household disruptions, abuse, neglect. Each patient got a score. Zero meant no ACEs. Verbal abuse alone would be 1, and 1 more for every other stressor on the list.
• Women experienced more in each category than men except for physical abuse. One in 9 patients had ACE scores of 5 or more.
• These patients were white, middle aged, at least some college education, employed, had insurance.
• Study has grown to all 50 states, continues by phone survey.
• Stress: positive stress is moderate, short-lived. Children learn to manage and control these experiences with the support of caring adults in the context of safe, warm, and positive relationships.
• Tolerable stress: may be prolonged, but recovery can occur.
• Toxic stress: strong, frequent or prolonged activation of the stress management system. Chronic, uncontrollable, and experienced without the support of caring adults.
• So how do ACE’s lead to early death? Disrupted neurodevelopment. Timing of the insult affects the resulting injury. Studies coordinated by the Harvard Center on the Developing Child.
• Fight-of-flight mode does not allow for prefrontal cortex engagement. Concentration is impaired, sometimes for prolonged periods. It’s hard to study if you don’t know where you are gong to sleep.
• Buncombe County has a Compassionate Schools Program. Demonstrates direct correllation between high ACE’s, low test scores.
• Addiction is a solution to toxic stress, and not a healthy one. 
• In the study, the looked at the number of ACE’s, not the severity of each experience.
• With increased ACE scores, risks of smoking, alcohol use, drug use, sexual promiscuity, unintended pregnancy/elective abortions increase dramatically.
• ACE score increases risk of suicide dramatically. Also strong association with hallucinations (not psychotic, usually trauma-related). Depression risk goes up dramatically.
• Risk factors for adult heart disease increase dramatically with ACE’s.
• Child sexual abuse correlates strongly with unexplained symptoms.
• An ACE score of 4 seems to be a big break point for diabetes, stroke, COPD.
• Population Attributable Risk (PAR) proportion of the disease in the population that is due to the exposure. 61% of mental health issues, 24% of cancer, 59% of HIV, 26% of cardiovascular disease attributable to ACEs.
• People with 6 or more ACE’s died 20 years earlier on average than those without ACE’s.
• Adults can transmit their biological experiences to their children through gene methylation.
• How do we help?
• Prevention is ideal, has the highest rate of return.
• Support resilience: A palm tree in a hurricane
• Consider universal screening.
• There are evidence-based preventive treatments. Child-Parent Centers, Durham family Initiative, Nurse-family partnership, Parent-Child interactional therapy, Positive Parenting Program, Safe Environment for Every Kid
• Resilience is based in safe, stable, nurturing relationships. Mindfulness helps. Wellness/self-care behaviors. Community resiliency model.
• Community Resiliency Model. Model teaches community members to teach other community members to stay in the resilience zone. Notice what is happening in your body. Resource: using something from your life that can calm you. Grounding: be where you are now, not in another moment. Shift and stay, which is to do all of the above when you’re out of the resilient zone.
• iChill app
• How is universal screening working? Success being shown at the Children’s Clinic in Portland, OR. Combine ACE and resilience score at baby’s age 4 months. Takes about 3-5 minutes, no social worker or therapist in the office, but do refer out as needed, very high patient satisfaction.
• ACEs Connection Roundup - email update if you are interested in this subject, can join a community group.
• Buncombe County is working across all domains to create a resilient community, including MD’s, schools, law enforcement.
• www.buncombeaces.org

Joseph Stegman, MD

Autism: History and changes in Diagnostic Criteria

• Cardinal Features of Autism: 1) deficit in reciprocal communication, 2) deficit in social reciprocity, 3) repetitive and restrictive thoughts and behaviors.
• You don’t have to have language to have reciprocal communication.
• Social Reciprocity: you have to be able to tell what other people are feeling, meaning. Responses may not be appropriate to the situation.
• Repetitive behaviors/restrictive thoughts don’t have to be classic in form. Flapping, spinning, obsessions are present, but the hallmark is that the interest is intrusive. Can’t follow the flow of the conversation.
• Joint attention: inability to focus with another person on a topic or endeavor.
• Social referencing: inability to have emotional response, even to one’s own name.
• Theory of mind: I know that you’re thinking, feeling
• Autism first described in 1943 (Kanner), but only separated from schizophrenia in the 1960’s. This separation marked the real beginning of our understanding of autism.
• Asperger’s article in German from 1944 was not translated into English until 1991, in time to be noticed and incorporated into DSM-IV in 1994.
• DSM-IV included 6 out of 8 criteria. Each of those symptoms sometimes affect normally developing children, but not all at once. Also needed impairment in function socially, communication, or pretent play. Also had to have onset prior to age 3.
• For DSM-IV no delay in language development or cognitive development was needed, and impairment was not needed in all three of the cardinal features of autism. Once we add PDD and Asperger’s, the definition of autism was very permissive, and the numbers of identified children ballooned.
• DSM V returns to the core features of autism, narrows the definition, now has just one diagnosis: autism spectrum disorder.
• DSM-V lumps communication and social reciprocity together. Nonverbal communication and difficulty developing relationships are the other two criteria.
• DSM-V allows symptoms to develop later, at whatever age it becomes apparent that you don’t have the skill set you need to have in these areas.
• Severity is graded on 3 levels. Level 1: requires support. Level 2: requires substantial support. level 3: requires very substantial support.
• Also must specify with or without intellectual impairment, with or without language impairment, with or without a biological or genetic condition.
• 12% to 15% of children with ASD will have a known genetic anomaly.
• Functionality is more important than IQ when it comes to autism (or really anything).
• Social Communication Disorder: deficit in social communication, competent but delayed. Does not meet all the criteria for autism spectrum disorder.
• There is no single medical test. Psychological testing varies by professional doing the testing. Language delay is one of the most common presenting problems in developmental-behavioral pediatrics, usually isolated language disorder or delayed maturity, not autism.
• Ultimately, it doesn’t matter how precise the diagnosis is if the child is getting the appropriate therapy.
• Screening: M-CHAT-R (Modified Checklist for Autism in Toddlers, Revised)
• Diagnosis: CARS (Childhood Autism Rating Scale), preferably from two sources. Symptoms should be occurring outside of the home as well.
• Autism Spectrum Rating Scales (ASRS), new tool, seems very useful.
• ADOS (Autism Diagnostic Observation Schedule), validated, but results can vary by the professional performing the exam, influenced by their beliefs about how widely we should understand autism.
• MCHAT-R. You still have to validate the answers with the parent.
• Remember that echolalia, parroting, scripting are common language behaviors in toddlers, not diagnostic of autism on their own.
• About 25-30% of patients have regression after 12-18 months, gaining words and then losing them.
• Really only 3 treatments with solid evidence. One is developmental therapy — speech or occupational therapy.
• School based programs are extremely important: preschool programs, exceptional children’s programs, TEACCH. Performance in school is a very strong marker of prognosis in autism.
• Behavioral therapy has been shown to help: Applied Behavioral Analysis, Floor Time, Picture Exchange Communications System, Relationship Development Intervention
• Many other therapies, including medications, horses, vitamins, chelation, but none of them has been shown to be helpful based on reliable evidence.
• Diagnosis is not as important as early intervention. KEY POINT: If the child is not talking at 18 months, send him/her to speech therapy!
• Much better to start early speech therapy if the child doesn’t really need it. Don’t delay, start around 18 months!
• We probably don’t really know what the incidence of autism is. There is too much variation in diagnostic criteria over time and too much interpretation involved in making the call.
• The concept of the gluten free diet was based on the model of phenylketonuria. No studies have demonstrated that any kind of dietary restrictions help with autism.
• Sensory Kid: can’t, can’t, can’t, won’t, won’t, won’t. Need environment manipulated around them so everything is just right.
• Proposed by Jean Ayres in 1963. These symptoms are real, but probably no such thing as sensory integration disorder. Occurs in the setting of developmental delay, for any reason.
• When the developmental process gets delayed, children are likely to have difficulties in responding to sensory inputs in an appropriate fashion. Occurs with autism, ADHD, cerebral palsy, multiple conditions which involve developmental delay. No delay, no sensory processing disorder.
• There are lots of these sensory kids out there. Talk to parents about the gift of adaptability, work on goals.
• Occupational therapy can be very helpful for kids with sensory processing disorder.
• Question response: Probably no need to refer to developmental pediatrics until after age 2 years.