Duke University Research Offers Hope for Autism Spectrum Disorder - NBC 5 Dallas-Fort Worth

Duke University Research Offers Hope for Autism Spectrum Disorder



    Duke University Research Offers Hope for Autism Disorder

    Duke University is completing the second phase of a medical trial that researches if cord blood (banked at birth) can help reduce the negative effects of autism spectrum disorder. A North Texas family is in the trial and they say their son has changed for the better since the treatment. (Published Thursday, July 26, 2018)

    In the Sillan family’s backyard, 5-year-old Blake and his little sister, Eloise, share the joys of being siblings.

    “They laugh, they joke, they giggle, they’re best friends and biggest enemies at the same time,” said their mother, Amy Sillan (who is an NBC 5 employee), while sitting next to their father, Pete Sillan, in their Southlake home.

    Stem cells obtained from cord blood under a microscope.
    Photo credit: NBC 5 News

    Amy and Pete appreciate those complexities because their two children didn’t always connect.

    “No, no. I would say if you peeked in our window a year ago you’d see a very different situation,” Amy said. “Blake and Eloise didn’t play together. Blake wanted to play, but he didn’t know how and Eloise would be frustrated and he most certainly didn’t play with toys.”

    Since birth, they said Blake was a unique child, but later came delayed motor skills, lack of speech, fixations and repetition and meltdowns.

    “Autism took up 85 percent of our day, and it almost paralyzed you,” Amy said. “If he didn’t hit the driveway button and you did - it would cause a meltdown and you couldn’t get him in or out of the car.”

    Just before Blake’s third birthday, he was diagnosed with autism spectrum disorder.

    “You know, it is a very terrifying thing to hear,” Amy said.

    “Not knowing about the high-functioning part, you know, your worst fears come into your mind, ‘He’s never gonna work, he’s never gonna have a girlfriend, never get married,’” Pete said.

    Six weeks after that diagnosis, the Sillan family found out about Duke University doing a medical trial to help children with autism.

    Dr. Joanne Kurtzberg is leading the research.

    Full Interview with Duke's Lead ResearcherFull Interview with Duke's Lead Researcher

    Full Interview with Duke's Lead Researcher

    (Published Thursday, July 26, 2018)

    “I do think that cell therapy is, at least at a preliminary stage, looking like it’s really gonna make a difference in the disease,” said Kurtzberg.

    Blake applied to be included in the trial and he was chosen.

    During the family’s two trips to Duke, researchers used an IV to insert a fluid into Blake, which either contained his own cord blood cells (which were banked and stored after birth), or he was given another child’s cells, or none at all (in the form of a placebo).

    Duke University's Autism, Cord Blood Study Showing Promising ResultsDuke University's Autism, Cord Blood Study Showing Promising Results

     The Duke Center for Autism is researching whether cord blood can help repair damaged brain areas.

    (Published Thursday, July 26, 2018)

    According to the Duke Center for Autism, "previous research has shown that cord blood cells can help reduce inflammation and signal cells to help repair damaged brain areas. The goal of this study was to investigate whether similar success will be shown in children with ASD."

    “But the study is blinded, so no one knows what their child received or what order,” said Kurtzberg.

    Four months after Blake’s first treatment at Duke, Amy and Pete saw a difference in their son.

    Advice for Parents with Children Diagnosed with Autism Spectrum DisorderAdvice for Parents with Children Diagnosed with Autism Spectrum Disorder

    Amy and Pete Sillan have advice for parents who have recently received an Autism Spectrum Disorder diagnosis for a child.

    (Published Thursday, July 26, 2018)

    “He was having full conversations and interacting a lot more socially,” Pete said.

    “He still struggles and he’s definitely very much still on the [autism] spectrum, but the changes in the unwanted behaviors that sometimes come with being on the spectrum have decreased — and whether that be aggression, or overly repetitive obsessions — those have all gone down and as Pete said, his language is just amazing,” Amy said.

    This is Duke’s second phase of this trial and these results won’t be analyzed until next fall; however, the trial’s first phase, which is already complete, showed promising results for the children with autism who participated in the study.

    Dr. Joanne Kurtzberg, with Duke University's Center for Autism and Brain Development, is leading a study using cord blood to treat the negative effects of autism.
    Photo credit: NBC 5 News

    “And we found that about 70 percent of the children improved getting their own cord blood,” said Kurtzberg.

    If this second trial also shows that cord blood is beneficial, Duke will work with the FDA to expedite approval of this treatment for all children.

    “That will be very exciting, because I know how challenging it is to have a child with autism and up until this point there really hasn’t been a therapy that could really modulate behavior,” said Kurtzberg.

    Expanded Access Protocol ExplainedExpanded Access Protocol Explained

    Dr. Joanne Kurtzberg of Duke University explains their Expanded Access Protocol, how all families of children with autism could receive their cord blood treatment, and the frustrations of families who are having to wait for it.

    (Published Thursday, July 26, 2018)

    For Amy and Pete, this research has given them hope because they can see a difference in their son.

    “Our parental instinct told us something was wrong before we got the diagnosis, and our parental instinct tells us that something’s happening,” Amy said. “We’ll let the science prove it, but, it could be maturity, it could be all the extra therapy he does, but, this is a different kid than a year ago.”

    How Friends Can Help a Family with AutismHow Friends Can Help a Family with Autism

    Pete and Amy Sillan talk about how friends can help a family with autism.

    (Published Thursday, July 26, 2018)

    Amy said her family is grateful and humbled by being chosen to take part in this medical trial, and they hope the results will one day be able to help all families dealing with autism.

    Understanding Families Affected by Autism Spectrum DisorderUnderstanding Families Affected by Autism Spectrum Disorder

    Amy Sillian shares what she hopes others will understand if they see a child (on the spectrum) and parent having a difficult time.

    (Published Thursday, July 26, 2018)

    Until then, Amy and Pete hope that more people will open up about what it’s like living with autism, so others who don’t have it will be more understanding during the most difficult moments that it can bring.

    What the Population with Autism Has to OfferWhat the Population with Autism Has to Offer

    Parents Amy and Pete Sillan talk about getting an autism diagnosis and how the world should look at what the population with autism has to offer.

    (Published Thursday, July 26, 2018)

    For families interested in receiving this treatment (who are not in the trial) they can pay Duke for the treatment through Expanded Access Protocol, but Kurtzberg said some families are frustrated because there’s a long waiting list to get in.

    Get the latest from NBC DFW anywhere, anytime

    • Download the App

      Available for IOS and Android