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IAN Research Reports

A belief in the value of sharing...

All over the United States, parents of children with an Autism Spectrum Disorder (ASD), and adults with ASD, are sitting down in front of their computers to contribute their data to the IAN Project. At 3 in the morning from the family PC, or at lunchtime from the office... in one long session or in several smaller ones...they are answering the IAN questionnaires, adding their knowledge to that of thousands of others. It is a way to tell their story.

In more traditional studies, research participants rarely hear what resulted from what they gave: their time, their passion, their effort. The IAN team believes that a research endeavor should be more of a two-way street. We will therefore be publishing Research Reports from time to time so that we can share with our participants and the entire autism community what we have learned so far.

As researchers from many fields begin to use the IAN data, applying it to hundreds of autism research questions, there will be even more to report! Even now, though, we have some preliminary findings based on the raw data flowing in that should be of great interest to our readers.

IAN Research Reports

  • IAN Research Report #17 - Bullying and Children with ASD
    Preliminary results of the IAN Bullying and School Experiences of Children with ASD survey show children with autism spectrum disorders are bullied at a high rate, and in some cases are provoked on purpose into outbursts or meltdowns by peers who know how to "push their buttons."
  • IAN Research Report #16 - Elopement and Wandering
    (April 2011)
    Preliminary results of the IAN Elopement and Wandering Questionnaire explore how frequently children with ASD elope, wander, or "bolt," leaving safe spaces and exposing themselves to danger. What characterizes this behavior, and what impact does it have on families?
  • IAN Research Report #15 - Grandparents of Children with ASD, Part 2
    (April 2010)
    More results from the IAN Grandparents of Children with ASD Survey, with a focus on grandparents' contributions and sacrifices, in emotional, care giving, and financial terms. Also highlighted are grandparents' relationships with their grandchildren on the spectrum.
  • IAN Research Report #14 - Grandparents of Children with ASD, Part 1
    (April 2010)
    Results of the IAN Grandparents of Children with Autism Spectrum Disorders Survey are shared, including the role grandparents played in identifying a grandchild's ASD, relationships with and worries for adult children who are parenting a child with ASD, and grandparent stress.
  • IAN Research Report #12 - Girls with ASD
    (December 2009)
    In this IAN Research Report, a companion article to "A Girl's-Eye View," we share our findings about girls with ASD: Both genders appear remarkably similar in terms of ASD characteristics. But...are there really few differences or are girls the overlooked orphans in ASD research?
  • IAN Research Report #10 - Fathers of Children with ASD
    (July 2009)
    We celebrate the participation of more than 1,000 fathers in IAN Research! This report discusses why fathers have been too often left out of research on child development, and how the IAN Project has worked to accommodate and welcome them.
  • IAN Research Report #7 - Parental Mood Disorders and ASD
    (October 2008)
    Responses to the IAN Parental Depression History Questionnaire indicate 44% of mothers and 28% of fathers participating in IAN have been professionally diagnosed with a mood disorder; more than half first experienced such a disorder before having children. Implications for family services and autism research are discussed.
  • IAN Research Report #6 - Regression
    (June 2008)
    A detailed report on regression and developmental plateaus in children with ASD; of 5,702 children whose parents answered our questions about skill loss or stagnation, 54% experienced one or the other.
  • IAN Research Report #5 - Autism Treatment Overview
    (February 2008)
    Most frequently used treatments for ASD; special report on speech and language therapy; and an update to IAN's weight and height findings -- only younger children with ASD tend to be taller, and only older children with ASD tend to be heavier, than unaffected siblings.
  • IAN Research Report #3 - September 2007
    School settings (regular vs. special education); use of one-on-one aides; age at first parent concern vs. age at diagnosis; variation in frequency of parent depression by child's ASD diagnosis.
  • IAN Research Report #1 - May 2007
    Children with ASD in IAN: diagnosis, age, regression, mental retardation, motor delays, and issues of mood and attention; families: issues of mood and attention and learning issues/speech delays.

Treatment Reports

  • Treatment Report - Social Skills Groups - February 2009
    Description of social skills groups, an intervention designed to help those with autism spectrum disorders overcome social challenges, plus a report on what IAN families currently using such groups report about their experience.
  • Treatment Report - Medications - April 2008
    Description of medications used to treat issues associated with autism, and a report on how many children with ASD participating in IAN are using which type of medication.

Special Topics

  • Data on Adults on the Autism Spectrum - September 2009
    After years of focusing almost exclusively on children, researchers in the field of autism are eager to learn from adults. Read this article to get a first look at IAN's preliminary data from adults on the spectrum.
  • Back to School Report - September 2010
    Families of children on the autism spectrum share their stories regarding education, describing a diversity of school settings, from public school to home school to virtual school, and covering topics like inclusion and the use of one-on-one aides.
  • Back To School Report - August 2009
    For families with children on the autism spectrum, a new school year is more than back-to-school shopping. Explore what IAN parents are saying about the educational challenges and opportunities for their children.
  • Back to School Report - August 2008
    An update on what families of children with ASD are telling IAN about school settings (public vs. private), classroom setting (time spent in regular vs. special education), and use of personal assistants. Also - links to resources for back-to-school!
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