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IAN Research Report #10: 1,000 Fathers of Children with ASD Participating in IAN Research!

Date First Published: July 1, 2009

Here at the Interactive Autism Network (IAN), we are celebrating. Over 1,000 fathers of children with autism spectrum disorders (ASDs) are participating in IAN Research! Mothers outnumber them by a large margin, but this is still an achievement. Why?

Historically, it has been common for fathers to be left out of research involving children, leaving a substantial gap in scientific knowledge. There are a number of reasons for this.

Happy father holding sonFor one thing, there is discrimination based on gender. Just as medical research often has focused on men, as though male physiology were the norm and the experience of women was irrelevant,1 researchers studying child development often focused solely on mothers, as though fathers had no importance in the realm of child-rearing. Mothers were blamed for negative child outcomes, as were some absent fathers, while fathers who lived in the same home were frequently ignored –- an unjust situation, and not one conducive to meaningful research.2 The situation, first discussed in the early 90s, has not improved a great deal.3 A recent review of the research literature on child psychopathology (that is, research about children with major issues such as depression) concluded: "A gross imbalance continues to exist between maternal and paternal inclusion in these investigations."4

Whether researchers viewed fathers as just not available, or as unwilling, fathers were frequently not invited to participate in child-focused studies. The more women entered the work place, and the more expectations for involved fatherhood grew,5 the less assumptions about one parent being "busy" and the other being "available" made sense, if they ever had.6 Those pressing for change have urged researchers to invite fathers to participate from the outset, to make it clear from the beginning that their role, their input, and their participation matter. Fathers don’t necessarily have to fit a traditional model either. Married to the mother (or not), living with the child (or not), serving as primary breadwinner or primary caregiver, biological father or stepfather…they still have important information and insight to offer.

In addition, including fathers in research has the potential to result in their being more fully included in their child’s interventions and treatments –- an area where fathers' involvement has also been marginalized.7 For example, one study that evaluated in-home training for fathers of children with ASD demonstrated the effectiveness of including fathers on many levels. "During one in-home session," wrote the researchers, "the autistic child made eye contact with the father and said 'Daddy' for the first time in the child's life. Another father related how after training he 'automatically' began imitating his child with animation and modeled this for his wife as well as other families of children with autism in informal social settings. A third family reported that the father, after training, felt empowered in his paternal role and became an active school liaison."8 Such findings encourage the inclusion of fathers in both research and clinical work.

Welcoming Fathers

Since its beginning, IAN Research has welcomed fathers, inviting their full participation in the project. Their participation is made easier in the same way mothers' participation is made easier: the project is conducted via the internet, and can be done any time. No time off work, child care, or clinic visits are needed. This ease of participation may be the reason that the 88% of IAN fathers who have never been involved in research before are able to participate in this online project. (See Figure 1.)

Figure 1.
Pie chart showing percent of fathers who have participated in ASD research prior to taking part in IAN Research

Now numbering over a thousand, our fathers of children with ASD range in age from 20 to 71, have children with all types of autism spectrum disorders, come from all kinds of backgrounds and from all over the United States. Through the Father Basic Medical History Questionnaire and the Parental Depression History Questionnaire, they have shared their own medical and family histories, as well as their experience of family stress. (See Figure 2.)

Figure 2.
Bar chart showing impact of several child-focused issues on fathers of children with ASD

Those who have filled in their children's questionnaires have shared their knowledge about each affected child's and sibling's development and history, as well. (In IAN Research, only one parent can fill in child-focused questionnaires, but this parent can be either the mother or father.)

Fathers' Information: It Matters!

The most valuable data set to an autism researcher is one that contains information on the entire family: children with ASD, their unaffected siblings, mothers and fathers. Just think how unhelpful it would be to have only half of the family history of 10,000 children with ASD. How can researchers conduct a thorough study without a complete picture? If not enough fathers participate relative to mothers, researchers focusing on certain topics will be left studying mothers and leaving out fathers once again –- just because they don’t have enough data for comparison.

We therefore especially thank all fathers of children with ASD already participating in IAN, and welcome new fathers wholeheartedly. Your assistance is greatly appreciated by researchers around the world.

If your family isn’t participating in IAN Research yet, we invite you to begin the process here. We also ask that participating fathers encourage other fathers of children on the spectrum to register. (Having children's mothers ask fathers to do this may help, but puts the mother in the position of nagging and once again insinuates that this child-focused research is her job and responsibility, with fathers as mere add-ons –- not the impression we want to give for all the reasons discussed earlier. We hope fathers will take a role in urging each other to participate.)

Nevertheless, mothers, if you have invited your child's father to participate in IAN Research, and he hasn’t yet, please do remind him to register and answer his questionnaires, especially the Father Basic Medical History. (You may want to send him this article!) If you haven't invited your child's father to participate in IAN yet, add him to your Family Profile and click on "Would you like to invite this person to participate in IAN?"

We would like to express our deepest appreciation to all fathers, all mothers, and all families who are participating in IAN Research. The time and effort you spend filling in our online questionnaires has resulted in the largest national autism data set in existence. Your participation has also helped over 150 research studies to recruit participants and advance autism research. Thank you, and may we continue to make such great strides together!

If you have any questions for the IAN team,
please e-mail us at researchteam@kennedykrieger.org or call at 866-348-3440.

 

References

  1. Carnes, M., Morrissey, C., & Geller, S.E. (2008). Women's health and women's leadership in academic medicine: Hitting the same glass ceiling? Journal of Women’s Health, 17(9), 1453-1462. View Abstract
  2. Phares, V. (1996). Conducting nonsexist research, prevention, and treatment with fathers and mothers: A call for change. Psychology of Women Quarterly, 20, 55-77.
  3. Phares, V., Fields, S., Kamboukos, D., & Lopez, E. (2005). Still looking for Poppa. American Psychologist, 60(7), 735-736. View Abstract
  4. Cassano, M., Adrian, M., Veits, G, & Zeman, J. (2006). The inclusion of fathers in the empirical investigation of child psychopathology: An update. Journal of Clinical Child and Adolescent Psychology, 35(4), 583-589. View Abstract
  5. Tiedje, L.B., & Darling-Fisher, C. (1996). Fatherhood reconsidered: A critical review. Research in Nursing & Health, 19, 471-484. View Abstract
  6. Phares, V. (1996). Conducting nonsexist research, prevention, and treatment with fathers and mothers: A call for change. Psychology of Women Quarterly, 20, 55-77. 
  7. Fabiano, G. (2007). Father participation in behavioral parent training for ADHD: Review and recommendations for increasing inclusion and engagement. Journal of Family Psychology, 21(4), 683-693. View Abstract
  8. Elder, J.H., Valcante, G., Yarandi, H., White, D., & Elder, T.H. (2005). Evaluating in-home training for fathers of children with autism using single-subject experimentation and group analysis methods. Nursing Research, 54(1), 22-32. View Abstract
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