ASNC Day on the Hill

 

capitol-hill

This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy.

The Autism Society of North Carolina traveled to Washington, D.C., to participate in the Autism Society of America’s annual Day on the Hill for Autism Society advocates. Our goal in participating this year was to make sure that we voiced to Congress the critical need for services and supports for people of all ages on the autism spectrum, as legislators consider affordable health care access, Medicaid funding, and education issues.

ASNC Director of Policy Jennifer Mahan met with staff from our congressional delegation on Capitol Hill February 16 to discuss our concerns about affordable, comprehensive health care; Medicaid’s importance to people with disabling conditions; the need for adult services including employment supports and housing; and the right to a free appropriate education that meets the needs of students with disabilities.

Many of our current members of Congress are aware of autism issues, as well as the work of ASNC, based on their connections to constituents, families and ASNC’s long history of service in NC. Despite this familiarity, with so many changes happening on a national level it is more important than ever for all of us to make the connection between the policy decisions faced by our members of Congress and the impact of those decisions on the lives of people with autism and their families.

 

What You Can Do

  1. Learn who represents you and North Carolina in Congress.
    • You are represented by two US senators, Richard Burr and Thom Tillis.
    • You are represented by one member of the US House of Representatives, based on where you live. You can find out which US House member represents you by entering your street address on the THIRD map at the bottom of this page. (Please note that only the third map on this page is for Congress. The other maps are for the NC General Assembly.) Or you can call the Congressional Switchboard at 202-224-312 for info on your members of Congress.
  2. Tell your representatives about your experiences with autism, as a person on the spectrum, as a family member, as a professional, as someone who cares:
    • Call or email. Handwritten letters take weeks or months to reach Congress because of security measures. Calling or emailing is better. Better still is inviting your member of Congress to a local autism event or local service organization to see things firsthand.
    • Say you live in their district. (OR for your two senators, say that you live in NC).
    • Tell them the basics: who you are, how autism has affected you, why the issue is important, and why retaining or getting access to health care and education services has helped. Keep it to the equivalent of a page or a five-minute conversation. Short summaries are more likely to generate questions and interest in your issue.
    • Be respectful and positive, but firm. Ask for what you need. Some talking points are below. See our toolkit Advocacy 101 for more on working with elected officials.

 

Talking Points to Advocate on Issues that Matter

We know that health and disability issues can be complex. Below are some points that you can use in your discussions with Congress. MOST IMPORTANT is telling your story about autism and what is working or what could be improved with the help of your member of Congress. You don’t need to be a policy expert!

  1. The Affordable Care Act/“Obamacare”
    • The ACA should not be repealed without a plan for replacement that maintains or improves access to health care.
    • People with autism have benefited from parts of the ACA that require coverage for pre-existing conditions, the ability to stay on families’ health-care insurance until the age of 26, and the ability to buy affordable coverage on the health marketplace.
    • Autism is a complex disorder that often includes other physical and neurological conditions.
    • Any health-care package must include both rehabilitative AND habilitative services, mental health and addiction services coverage, behavior treatment, and prescription drug coverage.
    • Because of changes in the ACA, North Carolina has dramatically improved access to children’s health care, which improves access to developmental screening, early identification of autism, and early interventions.
    • Health care must be affordable and address high cost-sharing requirements and high premiums. Many families already struggle with added costs of raising a child with special health needs. Many adults on the spectrum are unemployed or under-employed, so age cannot be the only factor in determining health-care subsidies.
  2. Medicaid
    • Medicaid provides health-care services, long-term care services, and other supports that maintain health, functioning independence, safety and well-being to an estimated 500,000 children and adults with disabilities in North Carolina.
    • State Medicaid programs provide critical screening, early intervention, and home-based health programs for children with autism under Early and Periodic Screening, Diagnostic and Treatment (EPSDT). Early screening, diagnosis, and intervention are critical to preventing long-term disability.
    • NC is already doing a good job with its federal Medicaid funds: NC has used managed-care principles, prevention services, and health data to effectively manage Medicaid costs.
    • Do not cut Medicaid funding. Program cuts, along with block granting or per capita caps would hurt people with autism who rely on Medicaid for essential services. These costs get passed along to beneficiaries, families, and providers who are already doing more with less.
    • Additional cuts or restrictions on Medicaid funding could prevent NC from addressing the 12,000 people with developmental disabilities, including autism, on NC’s Medicaid waiver waiting list.
  3. Education
    • The Individuals with Disabilities Act (IDEA) and the Every Student Succeeds Act (ESSA) ensure that students with disabilities get the education they need and that schools are subject to a strong accountability system to ensure all students succeed.
    • IDEA is parent-driven: parents ask for evaluations, participate in planning, and can access procedural protections to ensure that their child is able to learn.
    • The federal IDEA act is not perfect, but it is assuring families that their child is able to attend school and get access to the curriculum in the least restrictive environment. It is CRITICALLY important to assure these rights for students with disabilities.
    • Schools are already challenged to meet the needs of students with disabilities: right now only about 15% of the funding for educating special needs students comes from the federal government though much more was promised. Please fully fund special education.

 

If you have questions about policy issues, please contact Jennifer Mahan, ASNC Director of Advocacy and Public Policy, at jmahan@autismsociety-nc.org or 919-865-5068.

 

 

 

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Focus on Science at ASNC Annual Conference

Dr. Geri Dawson at the ASNC annual conference

Dr. Geri Dawson at the ASNC annual conference

Dr. Geri Dawson, Director of the Duke Center for Autism and Brain Development, opened the second day of our annual conference with a fact-filled presentation titled: “Autism Spectrum Disorders: What do we know? Where are we heading?”

We would like to thank her for sharing her time and knowledge with us. For those who were not able to attend her presentation, we are sharing some of the highlights here, including exciting news about effective behavioral interventions and current clinical trials for medical treatments.

Dr. Dawson started by talking about the prevalence rate of Autism Spectrum Disorder, which the CDC has reported as 1 in 68 among 8-year-old schoolchildren nationally, and 1 in 58 in North Carolina. The rising prevalence rate is also reflected in the number of clinical visits and unique patients they see at Duke, she said.

Who are these individuals with ASD?

Changes in the most recent Diagnostic and Statistical Manual of Mental Disorders, DSM-5, mean that Autism Spectrum Disorder (ASD) is not differentiated into subtypes such as Asperger’s Syndrome. ASD is diagnosed when an individual has problems with social communication and repetitive behaviors. Language delay is now categorized as a comorbidity, meaning it often is found in those with ASD, but not always, Dr. Dawson said.

Asperger’s and PPD-NOS have similar symptoms, causes, and treatments, so they are not separated out. But that does not mean that individuals cannot continue to claim these descriptors, just that doctors will not diagnose that way, Dr. Dawson said. The neurodiversity movement is “powerful and positive,” she said, adding that the Duke center supports it.

Other conditions that tend to co-occur in individuals with ASD include gastrointestinal problems, sleep difficulties, seizures, tantrums, self-injury, and aggression. Doctors are learning that by treating physical issues, such as GI problems, they can have a tremendous impact on behavioral issues, Dr. Dawson said. The challenge, though, is that individuals with ASD are not “good reporters” on health conditions.

Recent research highlights the talents and strengths of people with ASD, Dr. Dawson said, including one study that found that more than 60 percent had at least one exceptional skill in areas such as memory, visuospatial, reading, drawing, music, and computation. She said that we should be focusing on these skills to help with the employment problem among individuals with ASD. Less than one-fifth of high-functioning adults with ASD are able to find employment after high school, she reported. This high rate of unemployment cannot be blamed on their ASD, she said; often anxiety and depression are the causes.

In addition to unemployment, another sobering statistic she mentioned is the mortality rate among individuals with autism, which she said was six times higher than the general population’s. Risk factors include a tendency toward wandering, unsafe behaviors, side effects of medicines they might be using, seizures, and heart disease, which might be attributed to medicines and a lack of exercise.

What do we know about the causes and risk factors for ASD?

Autism Spectrum Disorder comes in many forms with many causes, many of which are still unknown. Breaking down the subtypes will help us to find treatments, Dr. Dawson said.

Fifteen to 20 percent of cases can be traced to genetic causes including Fragile X Syndrome, neurofibromatosis, tuberous sclerosis, and certain risk genes. Once risk genes are identified, scientists can create “mouse models” of the mutation and identify the biochemical pathway that is affected. This can lead to testing of medications for individuals with ASD. For more information about autism and genetics, Dr. Dawson recommended the website http://sfari.org/.

But ASD cannot be blamed on genetic risk factors alone – a complex interaction among genetic and environmental factors contributes to the risk. Some factors are protective, meaning they make it less likely that an individual will have ASD; two such factors are being female or folic acid being taken before or during the pregnancy.

Other factors increase the risk of ASD developing: advanced parental age, premature birth, or inflammation during a pregnancy, which can affect fetal brain development. Such inflammation could be caused by maternal infection, maternal antibodies, pesticides, or traffic pollution.

ASD disrupts long-range connections between brain regions, Dr. Dawson said. This causes problems with social interaction, which is a complex behavior that requires you to do several things at once. But at the same time, it might also explain the high level of skill in one specific area.

Promising directions in behavioral treatments for ASD

Multiple studies of infants at risk for autism have made it possible to detect ASD and begin early intervention for such children even before they are a year old. Scientists studied siblings of children diagnosed with ASD from the time of their birth, recording their characteristics in great detail. Eventually, one-fifth of those infants were also diagnosed with autism. The researchers were then able to backtrack and find symptoms of autism emerging when the children were 6 months to 1 year old. These included more interest in toys than people, less babbling than their typical peers, failure to orient to their names, reduced social smiling, and fewer consonant vowel syllables. By 12 months, the children exhibited impaired joint attention, delayed gesture, delayed language, and poor social imitation.

The exciting part of early detection is that it enables early intervention, Dr. Dawson said. With naturalistic developmental behavioral interventions, the intervention is incorporated into the child’s everyday life with their loved ones. Researchers have found that children learn about their world through active exploration and that emotional engagement keeps their attention and encourages retention. Language development is built upon joint attention, so this is also a crucial skill.

Some of the naturalistic developmental behavioral interventions that Dr. Dawson listed included Pivotal Response Treatment, created by Drs. Lynn and Bob Koegel, also conference speakers; JASPER; SCERTS; and Early Start Denver Model, which she co-created. A book she co-authored, An Early Start for Your Child with Autism, includes everyday activities and strategies parents can use for capturing attention, social engagement, nonverbal communication, imitation, joint attention and play, and language.

“Learning occurs every moment,” Dr. Dawson said. “These strategies can be used throughout the day.”

In one study conducted by Sally Rogers at UC Davis in which therapy was delivered by parents, the children had few symptoms of ASD by age 3.

Early behavioral intervention is successful because it is actually changing the course of brain development, Dr. Dawson said. Studies show that it improves IQ, language, and social behavior. Many individuals do still struggle with language and learning, so medical treatments are needed in combination to reduce the disability associated with autism.

The future: medical treatments

Currently, only two medications are FDA-approved for autism, and they address associated conditions. They are Risperdal for those ages 5-16, and Abilify, for those ages 6-17. There is hope that in the next few years, some of the clinical trials going on now will translate genetic findings into drug targets, Dr. Dawson said.

A current study at Duke seeks to determine whether infusions of umbilical cord blood – either that of the children themselves, or someone else’s – can reduce core ASD symptoms. Researchers hypothesize that the treatments might reduce neuroinflammation and are assessing behavioral and brain outcomes over one year.

Another multi-site clinical trial that Dr. Dawson mentioned involves the hormone oxytocin, which regulates emotional and social behavior. Research funded by the NIH is assessing oxytocin’s effect on social communication in 3- to 17-year-olds. The UNC-CH ASPIRE research program is conducting one of the studies; for more information, click here.

For more information about Dr. Geri Dawson and the Duke Center for Autism and Brain Development, visit its website at www.autismcenter.duke.edu. Individuals and families can join the Duke Registry for Autism Research to receive information about events and activities, information about studies for which they might qualify, and free diagnostic evaluations and referral information.