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IAN Research Report #3: Data Overview

Date Last Revised: 
September 28, 2018
Date Published: 
September 14, 2007

Contents
Introduction
Participation in IAN
Children with ASDs: School Settings
Children with ASDs: One-on-One Aides
Children with ASDs: Age at First Concern vs. Age at Diagnosis
Parents and Depression: Variation by Child's Diagnosis
Questionnaires in Development
A Request for Families' Feedback
Disclaimer

Introduction

The Interactive Autism Network (IAN) was launched in April, 2007 to accelerate the pace of autism research.

The IAN project proposed to collect data directly from families of children on the autism spectrum over the internet, making their participation easy and convenient. We proposed to share the data collected with qualified autism researchers all over the world, and to help researchers find the participants they need for their own studies. We also promised to give back to families and the entire autism community, listening to their concerns and informing them of the project's status and of what we are learning. In keeping with this promise, we are pleased to present our third IAN Research Report.

Participation in IAN

Since IAN's launch, 18,000 mothers, fathers, siblings, and children with Autism Spectrum Disorders (ASDs) have joined the project. Information continues to flow into the IAN database from participating families all over the United States. Autism researchers are applying to use the IAN data or recruiting subjects for their studies through IAN. Some are even collaborating on future IAN questionnaires.

IAN Families

Thousands of parents are making a valuable contribution to IAN by sharing their knowledge about themselves, their child with an ASD, and their unaffected children. Participating are:

  • 5,712 mothers
  • 849 fathers
  • 6,626 children with ASDs
  • 4,751 unaffected siblings

Please note: our charts and graphs are based only on the data
of those who have completed their IAN forms.

Researchers are often particularly interested in families with more than one child on the autism spectrum. How many families participating in IAN Research meet that description?

Researchers struggle with how to define "family" when they are conducting such an analysis. You can have single-parent (mom or dad led) families, two-biological parent families, complex step-families, adoptive families, grandparent-with-guardianship families, and many more. For the purposes of this analysis, we decided to count maternal clans, that is, groupings of children by mother. How many groupings of moms with children are there in IAN Research, and how many of those have more than one child with an ASD?

Table 1, which follows, shows that there are 5,387 groupings of mothers with their affected and unaffected children in IAN Research. 524 of these have more than one child on the autism spectrum.

ONE child on the autism spectrum
4,863
TWO children on the autism spectrum
472
THREE children on the autism spectrum
46
FOUR children on the autism spectrum
4
FIVE children on the autism spectrum
2
Table 1. Maternal Clans in IAN Research with
One or More Children with an ASD

 

 

IAN Researchers

Autism researchers are beginning to learn about IAN and how the project can support their efforts. Some are applying to use IAN's valuable data-set, while others are requesting IAN's help with recruiting participants for studies. (A large number of proposed autism studies never get off the ground for lack of available study participants. It is not easy for researchers to find people fitting the specific criteria they seek, such as those of a certain diagnosis, gender, or age. IAN helps researchers overcome this barrier to success.)

Institutions using the IAN data-set or recruiting subjects through IAN include:

The University of Maryland

The Cleveland Clinic

Yale Medical School
Cold Spring Harbor Laboratory
University of Alabama
National Institute of Mental Health
Kennedy Krieger Institute
University of Miami
University of North Carolina - Chapel Hill
Boston University School of Medicine
University of Wisconsin - Madison
University of Michigan
Robert Wood Johnson Medical School
Oklahoma State University
D'Youville College
University of Massachusetts - Boston
Indiana University School of Medicine
Ohio State University

IAN would like to thank researchers who are pioneering the use of IAN's subject recruitment and data services, with special appreciation to those researchers who have volunteered to work with us to improve IAN's content and to assist with the development of future IAN questionnaires.

IAN Data: Preliminary Findings

School Settings

In our first IAN Research Report, we described the types of schools children with ASDs were attending, focusing on "private vs. public." In our current report, we consider the question: How much time do children with ASDs spend in a special or regular education setting?

As shown in Figure 1, below, 51% of children with Autism spend all of their school day in a special education setting. Eighty-eight percent spend at least some of their day in special education.

Pie chart shows percentage of children with Autism in IAN Research in various class settings
Figure 1. Children with Autism in IAN Research - School Setting

Thirty-six percent of children with PDD-NOS are spending all of their school day in a Special Education setting. Eighty percent spend some of their day in special education. (See Figure 2.)

Pie chart shows percentage of children with PDD-NOS in IAN Research in various class settings
Figure 2. Children with PDD-NOS in IAN Research - School Setting

Twelve percent of children with Asperger's Syndrome are spending all of their school day in a special education setting. Fifty-six percent spend some of their day in special education. (See Figure 3.)

Pie chart shows percentage of children with Asperger's in IAN Research in various class settings
Figure 3. Children with Asperger's Syndrome in IAN Research - School Setting

Children from across the autism spectrum receive significant special education services --a fact that is of great concern to children, parents, educators, and public policy makers. 

One-on-One Aides or Personal Assistants

Many children with ASDs are assigned a personal assistant or one-on-one aide in the classroom. Such assistants serve as a child's "shadow," helping to keep him or her on task, helping to implement behavior plans, or just being available to intervene or take a child out of the classroom when the child is feeling overwhelmed. The role varies from school to school and classroom to classroom, but one thing is certain: many children with ASDs are using the services of a personal assistant, whether they spend their day in a special education setting, a regular education setting, or a combination of the two.

How many children with ASDs are assigned one-on-ones, whether full or part-time? We found that about 48% of the children were using the services of a personal assistant. For children with Autism this figure rose to 54%, although children across the spectrum make significant use of aides. (See Figure 4.)

Bar chart shows what percentage of children have a one-on-one aid by ASD diagnosis
Figure 4. Children with ASDs in IAN Research -
Use of One-on-One Aides by Diagnosis

Further examining the IAN data, we found that use of aides is highest during the elementary grades: 57% of children with ASDs in Grades 1 through 3 and 55% of children in grades 4 and 5 have a full or part-time aide. The use of one-on-ones is common for other age groups, as well: 47% of Preschoolers and Kindergartners, 49% of Middle School students, and 39% of High School students are assigned a personal assistant in the classroom. (See Figure 5.)

Bar chart shows percentage of children with ASDs in various grades using one-on-one aides
Figure 5. Children with ASDs in IAN Research -
Use of One-on-One Aides by Grade

We wondered if there was any difference in how often boys and girls use personal assistants, but there was very little. Regardless of gender and diagnosis, many children on the spectrum require the extra assistance of a personal aide while at school. 

Age at First Concern

In our second IAN Research Report, we examined parents' area of first concern regarding their child on the spectrum. We found first concerns were quite varied, and included worries over a child's delayed speech, lack of response to his or her own name, loss of previously gained skills, or tantrums and constant crying. In the current report, we look at first concern by age. When did parents begin to worry?

Bar chart showing when parents first became concerned about their child who was eventually diagnosed with an ASD
Figure 6. Children with ASDs in IAN Research -
Age of First Concern by Diagnosis

You can see in Figure 6, above, that over 50% of parents of children who were eventually diagnosed with Autism or PDD-NOS first became concerned about development or behavior when their child was between twelve and twenty-three months old. As might be expected, parents of children who were eventually diagnosed with Asperger's Syndrome tended to become concerned somewhat later, when their child was between eighteen months and three years of age. Considering that Asperger's children aren't generally diagnosed until much later than other children with ASDs, 1,2  it is interesting to note that 82% of parents of children with Asperger's say they were concerned about their child by age 3 or younger.

This led us to examine a larger question. For IAN families, how much time elapsed between a parent's first concern about their child and their child's diagnosis?

 
Average Age of
First Concern
Average Age of
Diagnosis

Average Gap Between Concern and Diagnosis

 

Autism
(n=2007)

1.5 years
3.1 years
1.6 years
PDD-NOS
(n=978)
1.7 years
3.7 years
2.0 years
Asperger's Syndrome
(n=694)
2.5 years
6.7 years
4.2 years
Table 2. Average Gap Between Time of
Parent's First Concern and Child's Diagnosis

 

As shown in Table 2, above, we found that, on average, the parents of children with Autism had become concerned about their child's development by the time their child reached 1.5 years of age. A diagnosis was not generally received until the child was 3.1 years old, so a little more than a year and a half had elapsed between the time parents began to worry and the time they got a definite answer about their child. Parents of children with PDD-NOS became concerned just a little bit later, on average --when their child was 1.7 years of age--and waited about 2 years to receive a diagnosis.

Parents of children with Asperger's Syndrome became concerned about a year later than the parents of those with either Autism or PDD-NOS, but did not receive a diagnosis until an average of 4.2 years after that, when their child was nearly 7 years old. Could it be that the concerns of parents of more verbal children with ASD are being dismissed by well meaning healthcare professionals? It certainly appears that way. It may be that the less "classic" the autism, the less a not-so-experienced professional is able to identify it.

Considering the vital importance of early intervention, the gap between the time parents of children with ASDs recognize that something is wrong and they are able to get a diagnosis is troubling.

Parents and Depression: Variations by Child's Diagnosis

In our first IAN Research Report, we stated that 45% of the mothers of children with ASDs taking part in IAN Research had been diagnosed with or treated for Depression. Considering that the lifetime prevalence for major depressive disorders in the United States is thought to be around 16.6%, 3  it is clear that this is a very high number.

The 45% figure was first calculated prior to IAN's launch, and was based on only a few hundred responses. It has now increased slightly to 46% based on 4,961 responses received as of September 18, 2007.

Twenty-four percent of fathers with a child with an ASD also report having been diagnosed with or treated for Depression. Although not as startling as the Depression figure for mothers, this is still quite high.

We wondered: would the percent of parents reporting a history of Depression vary at all by child's diagnosis? Might it be higher for parents of children who had a more severe diagnosis, for example? An analysis gave the following results:

Child's Current ASD Diagnosis

Percent of Mothers Diagnosed with or
Treated for Depression

Autism
(n=1987)
44%
PDD-NOS
(n=977)
44%
PDD and ASD
(n=498)
44%
Asperger's Syndrome
(n=702)
55%
Table 3. Child's Current ASD Diagnosis and Maternal Depression

 

As shown in Table 3, above, the percentage of mothers who have been diagnosed with or treated for Depression remained high across the board, at a rate of 44% for mothers of children with each Autism Spectrum Disorder (ASD) except Asperger's Syndrome. For mothers of children with Asperger's Syndrome the percentage was quite a bit higher: 55%. This is not what we had hypothesized. In fact, it was the opposite of what we thought we might find: more depressive history in mothers of more severely affected children.

We conducted the same analysis for fathers, focusing only on Autism, PDD-NOS, and Asperger's. (Fewer participating fathers means smaller sample sizes. We did not have enough fathers of children with ASD and PDD to conduct a meaningful analysis for those diagnoses.) Our results are shown in Table 4, below.

Child's Current ASD Diagnosis

Percent of Fathers Diagnosed with or
Treated for Depression

Autism
(n=297)
26%
PDD-NOS
(n=138)
17%
Asperger's Syndrome
(n=73)
32%
Table 4. Child's Current ASD Diagnosis and Paternal Depression

 

According to our analysis, 17% of fathers of children with PDD-NOS reported having been diagnosed with or treated for Depression. This figure rose to 26% for fathers of children with Autism, and 32% for fathers of children with Asperger's Syndrome.  As occurred with mothers, fathers with children with Asperger's Syndrome reported having been diagnosed with or treated for Depression more frequently than fathers of children with other ASD diagnoses.

What might explain these differences? We don't have enough data to know at this time, but it is interesting to note that children with Asperger's were themselves the most likely of the children with ASDs to have been diagnosed with or treated for Depression. As illustrated in our first IAN Research Report, when we considered only children age ten and over (who would be more likely to have received treatment for a psychiatric disorder than very young children), we found that 38% of children with Asperger's, 14% of children with PDD-NOS, and 10% of children with Autism had been diagnosed with or treated for Depression.

This higher percentage of reported Depression in parents of children with Asperger's Syndrome is also intriguing in light of a recent study which showed maternal recurrent mood disorders to be associated with elevated cognitive and adaptive functioning in mothers' affected children. 4  Whether this is due to hereditary factors or to the specific difficulties of raising a child with "mixed" functioning --very high in some areas, very low in others-- remains to be explored.

 

IAN is currently developing a detailed Maternal Depression Questionnaire. We hope the data collected via the new questionnaire will provide more in depth answers to our questions about depression in mothers of children with ASDs.

Questionnaires in Development

IAN has collected a great deal of data from families of children on the autism spectrum, but this is just the beginning! The questions we have asked families so far are general ones about medical history, diagnosis, school settings, and treatments, but there is so much more researchers want to know from families.

Working with researchers from relevant fields, IAN will be developing a new generation of questionnaires. These include the following:

  • Adults with Autism Spectrum Disorders Questionnaire
  • Immunization Questionnaire
  • Maternal Depression Questionnaire
  • Child with ASD Weight and Height Questionnaire
  • Perinatal (Birth and Pregnancy) Questionnaire
  • Gastrointestinal Questionnaire
  • Economic and Social Impact Questionnaires

We will solicit feedback on draft questionnaires from individuals with ASDs and their families as well as from researchers. As each of these new questionnaires comes on line, we will let families participating in IAN Research know by e-mail.

We want to make sure that the time required to contribute to the IAN Research project does not become too much of a burden for families. Therefore, not every family will be asked to answer every questionnaire.

Feedback: Stumbling Blocks?

There are still many parents who have registered for IAN Research, but have not begun their questionnaires. There are many others who have started their IAN questionnaires, but not finished them. It's truly important to complete the questions, because we cannot include your data in analysis until you have completed your forms!

Are you encountering any problems? If you are having technical difficulties, or running into any other stumbling blocks, please let us know. We are here to help! Do you have any comments or feedback for us? We are here to listen!

Contact the IAN Team at researchteam@ianproject.org.

Individuals with ASDs, Families, and Researchers: Our Thanks

We would like to express our appreciation to every individual with an ASD, family member, and researcher who has helped to make the IAN project a success. Your participation and enthusiasm have been essential to the progress made so far. Thank you!

 

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.

We encourage autism researchers investigating these topics to apply for access to the IAN database. Contact researchteam@ianproject.org.

References

  1. Howlin, P., & Asgharian, A. (1999). The diagnosis  of autism and Asperger syndrome: Findings from a survey of 770 families. Developmental Medicine and Child Neurology,  41(12), 834-839. View abstract
  2. Wiggins, L.D., Baio, J., & Rice, C. (2006). Examination of the time between first evaluation and first autism spectrum diagnosis in a population-based sample. Developmental and Behavioral Pediatrics, 27(2), S79-S87. View abstract
  3. Kessler, R.C., Berglund, P., Demler, O., Jin, R., Merikangas, K.R., & Walters, E.E. (2005). Lifetime prevalence and age-of-onset distributions of DSM-IV disorders in the national comorbidity survey replication. Archives of General Psychiatry, 62(6), 593-602.  View article
  4. Cohen, I.L., & Tsiouris, J.A. (2006). Maternal recurrent mood disorders and high-functioning autism. Journal of Autism and Developmental Disorders, 36, 1077-1088. View abstract
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