IAN Research Report #1 - May 2007
The Interactive Autism Network (IAN) was launched on April 2, 2007. The project, which aims to collect information from tens of thousands of families with a child with an Autism Spectrum Disorder (ASD), was designed to accelerate autism research. To gain a better understanding of autism and how to treat it, scientists need what families have: detailed information on children's diagnosis, treatments, environment, and services received. IAN is gathering this information directly from families, giving them an opportunity to "be part of the solution" and to make their voices heard.
To participate in IAN, a family must live in the United States and have a child under the age of eighteen with an ASD diagnosis. (Individuals 18 years of age and older with an ASD will also be able to participate starting in early 2008.)
In its first month, news of the IAN Project and its mission reached a wide audience via Autism Speaks, CNN, National Public Radio, and a variety of print, radio, television, and internet media. Committed families from all over the United States answered the call. Mothers and fathers of children with ASDs sat down at their computers, registered for IAN at www.IANproject.org, and completed questionnaires on themselves, their child with an ASD, and their unaffected children. As of May 11, 2007, IAN has already collected data on over 14,000 individuals: children with ASDs, their parents, brothers, and sisters. Our thanks go out to these IAN pioneers!
Although very preliminary, we now have some results to share.
The IAN Data
What we present in this report is a first snapshot of the IAN data in its simplest form. Please note: this data is preliminary and has not passed the standards of scientific peer review. It should not be used as a basis for decision making.
Parents taking part in IAN are asked to respond to several online questionnaires, all of which can be viewed in IAN Research Questions. Parents can take as many sessions as they need to complete the questionnaires. (Once a parent answers a question, IAN saves that answer so that parents who are interrupted while filling in a questionnaire can return later to take up right where they left off.) The data that we discuss here represents information only from those who have completed and "finalized" their questionnaires. ("Finalizing" is the step where a participant looks over their answers and indicates that everything is correct and ready to go.)
To learn about how to interpret the tables and graphs presented in this report, see Making Sense of IAN Charts and Graphs.
Children with Autism Spectrum Disorders
Who are the children "on the autism spectrum" taking part in IAN Research? How old are they, what ASD diagnoses do they have, what types of schools do they attend, and what are some of the challenges they face?
The children with ASDs taking part in IAN Research are from all across the autism spectrum. In Figure 1, below, we show how many children have the various Autism Spectrum diagnoses. As expected, because of its rarity, we have only a few children with Childhood Disintegrative Disorder. The majority of children in IAN Research (49%) have a current diagnosis of Autism; 23% have a diagnosis of PDD-NOS; and 17% have a diagnosis of Asperger's Syndrome. About 11% have a more generic diagnosis of Autism Spectrum Disorder or Pervasive Developmental Disorder.
Children with ASDs in IAN Research cover a wide age range, from barely one to nearly 18 years of age. The majority fall between the ages of 4 and 12, but toddlers and teens are also well represented, as is illustrated in Figure 2.
Ever since autism was first described, there have been reports of children who were developing normally only to lose skills or abilities they had previously gained. This has been called regressive autism. The topic of regression is complex, and there are many definitions of what constitutes regression. Our initial question to parents was simply: "Did your child seem to lose words, daily living skills, motor abilities, or emotional or social skills that he or she previously had?" As shown in Figure 3, according to their parents, 44% of the children in IAN Research seemed to lose some type of skill or ability during their early development. Researchers will certainly want to explore this in much more detail, investigating at what age, and under what circumstances, which children lost what type of skill.
Though not shown in Figure 3, 53% percent of parents of a child with Autism reported that their son or daughter had experienced a loss of skills, while 38% of those with a child with PDD-NOS did so. Of parents with a child with Asperger's Syndrome, 26% reported such a loss. For the Autism and PDD-NOS groups, the skill impacted most was usually Speech/Language; for the Asperger's group, Social Skills/Eye Contact was usually the skill most impacted.
Figure 4 shows that 10% of the children with an ASD in IAN Research have also been diagnosed with Mental Retardation. This number increases to 15% if only children with a diagnosis of Autism are considered (see Figure 5).
Nearly half of the children with an ASD in IAN Research have also been diagnosed with a motor delay. This was the case whatever their ASD diagnosis. Although not part of official diagnostic criteria, motor issues are increasingly recognized as a significant aspect of ASDs (see Figure 6).
The majority of children with ASDs in IAN Research are receiving their education through the public school system, whether in a school for typically developing children (55%) or in a public school for children with special needs (20%) (see Figure 7).
Issues of Attention and Mood
Many of the children with ASDs in IAN Research have also been diagnosed with or treated for an attention or mood disorder. It is not yet clear how many of these diagnoses or treatments are a result of a misdiagnosis on the way to an accurate one, and how many are due to separate conditions that truly exist alongside a child's ASD. Whatever the case, it is clear that children with ASDs often struggle with issues of attention and mood. More research is definitely needed!
The bar graph below displays the percentage of children in IAN Research with a diagnosis of Autism, PDD-NOS, or Asperger's Syndrome, ten and over, who have been diagnosed with or treated for an attention or mood disorder. (Why are we only showing children ten and over? Including younger children is likely to dilute the percentages by mixing in individuals so young they would not be very likely to have been diagnosed with, for example, Depression.)
Attention deficits and/or hyperactivity, as well as anxiety, appear to be especially troublesome for many of these children, whatever their ASD diagnosis. Children with Asperger's Syndrome seem to be at particular risk.
Top Twenty Treatments
Parents participating in IAN Research list what treatments their child with an ASD is currently receiving. Over time, they update this report, explaining why new treatments were started or old ones stopped. Additional details provided about each treatment include who influenced the decision to start a treatment, how difficult the treatment was to obtain, and how well the treatment seems to be working compared to expectations. Parents have so far identified 1,030 different treatments! The treatments, interventions, or services used most frequently by families appear in Table 1, below.
According to our preliminary analysis, on average, families are using five different treatments simultaneously.
Families of Children with Autism Spectrum Disorders
The IAN Project is gathering information not just on children with ASDs, but on their parents, brothers, and sisters. Families matter is so many ways! Researchers are interested in how families are coping with the stress of having a child with an ASD, as well as in genetic factors that family members may share, and environmental challenges which they may face in common.
Learning and Speech Issues in Family Members
Children with ASDs often have difficulty with language and speech issues. Researchers are interested in how often the parents or brothers and sisters of children with ASDs have had the same type of difficulties, even if in more subtle ways. From the IAN data, it appears such challenges do appear fairly often in relatives of a child with an ASD, more in fathers than in mothers, and more in brothers than in sisters (see Figure 9).
Issues of Attention and Mood in Family Members
Many of the children with ASDs in IAN Research have been diagnosed with or treated for an issue of mood or attention. To what extent are family members impacted by similar issues?
In the chart below, we consider mothers, fathers, and brothers and sisters between the ages of ten and eighteen. Again, we are looking at this age range for the siblings because including younger children may dilute the percentages by mixing in individuals so young they would not be very likely to have been diagnosed with, say, Depression.
One interesting finding is that 31% of brothers (10-18 years old) have been diagnosed with or treated for ADHD or ADD. A high percentage of children with ASDs had also been diagnosed with or treated for these disorders of attention.
Another finding of note is that 45% of mothers have been diagnosed with or treated for Depression. This is a significant percentage, especially considering that this does not include those who were depressed but never sought treatment. On the IAN Community Discussion Forums, participants are debating: To what extent is this rate so high because Depression runs in families of children with ASDs? To what extent is this rate so high due to the extreme stress of parenting a child with an ASD? Researchers will want to examine this question in much more detail (see Figure 10).
Twenty-two percent of fathers also report having been diagnosed with or treated for Depression.
Calling All Fathers!
As you look over the IAN data, you may have noticed that we have over 3,000 mothers participating compared to only about 500 fathers. Fathers --your data is crucial, too! Please register and fill in your questionnaires. Mothers, if you haven't already done so, please invite fathers to participate. (And if they've received an invitation and not responded, a gentle reminder might be in order.)
Fathers and mothers must have separate and distinct e-mail addresses to participate, as their individual information is kept confidential even from a current or former spouse. If a couple is sharing an e-mail account, they will need to create an additional account for one of the pair at yahoo.com, msn.com, or one of the other providers of free e-mail accounts on the web. It's simple to get a second account, and going through the process is for a worthwhile cause.
Just the Beginning
The preliminary findings shared here are just a first, quick look at the large amount of information that IAN will make available to qualified researchers. (Note that the data that they can obtain does not contain any information that identifies our participants.)
Additional questionnaires addressing the many complex aspects of ASDs will continue to be designed and provided to families on a regular basis. There is so much more to be done!
If You Are Already Participating...
Our heartfelt thanks goes out to you for giving of your time and energy to contribute to this project. We are so glad you have decided to join us on this journey, and we'll let you know when new questionnaires are ready for you to answer. Our job and yours is just beginning. May we find many answers together!
If You Have Not Yet Joined IAN Research, or Would Like to Spread the Word...
Do we still need more families to participate in the IAN Project? ABSOLUTELY! We are only just starting out, and need many more families to register and answer the IAN questionnaires.
Interested in participating? Learn more about IAN Research.
If You Are a Researcher Who Would Like to Access the IAN Data or Recruit Research Participants Through IAN...
Please visit our For Researchers section. There you will find a description of the project, a letter welcoming you to IAN from our Director, Paul Law, M.D., MPH, and IAN data access and subject recruitment applications.
Our Thanks To Everyone Who Has Helped Get IAN Off to Such a Wonderful Start!
Disclaimer - Please Note: These Findings Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted via the Internet by parents of children with autism spectrum disorders (ASDs) from the United States who choose to participate. They may not generalize to the larger population of parents of children with ASDs. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication. IAN views participating families as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.