IAN StateStats

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Since April 2007, IAN Research has been collecting information from families who have a child with an autism spectrum disorder (ASD). IAN Research is a study at the Kennedy Krieger Institute overseen by the Johns Hopkins Medicine Institutional Review Board. As of December 2008, IAN Research had collected a wealth of information from over 10,000 families on topics ranging from treatment use to parental depression. 

Credits

IAN StateStats is a collaborative project of the Thompson Center for Autism and Neurodevelopmental Disorders, University of Missouri, the Missouri Department of Mental Health, and the IAN Project.

Contents

Overview

IAN StateStats allows anyone concerned with ASDs to display information derived from the data in the IAN Research database in a variety of ways:

• Quick StateStats allows you to display and compare information collected from one state to the United States as a whole.
• Advanced StateStats allows you to configure your own dashboard of information based on your specific interests. That is, you can select the indicators that you want to follow, group the information as you like it, and display it in a pie chart, graph, or table.

IAN StateStats Indicators summarize data on complex issues to indicate the overall status and trends in autism treatment, diagnosis, and expenditures. People involved in policy and public health decisions may use these tools to compare state performance against national performance and to signal key issues to be addressed through policy interventions and other actions. Though we are making these information tools accessible to everybody, we originally designed the StateStats for people involved in public health and health policy research.

Throughout StateStats, you will see the number of total responses for a particular calculation. Note that some of these numbers are quite small in certain states. When numbers are small, especially fewer than 30, they can be misleading (find out more). If you are in a state that has low participation, we encourage you to promote participation in IAN Research so that the information can better serve policy researchers and advocates.

Using Quick StateStats

Quick StateStats allows you to display and compare information collected in a selected state to the United States as a whole. To use Quick StateStats:

1. Go to http://dashboard.ianexchange.org/statestats.aspx.
2. Select Quick.
3. From the Select a State list, select the state that you want to evaluate.
4. Click the Show Results button. StateStats Quick displays a page containing tables, charts, and graphs that compare the information from the state that you selected to information from the entire United States.

Viewing a different state

To view statistics about a different state, select a different state from the state list and click the Show Results button.

Interpreting the charts and graphs on Quick StateStats

Diagnosis

Figure 1. Distribution of Autism Spectrum Disorder Diagnosis Sample

This chart shows the distribution of the parent-reported first diagnoses that the affected children enrolled in IAN Research received from a professional. Many parents report a change in their child’s diagnosis over time. This sample chart displays only information on the child’s first diagnosis. This chart may indicate how autism spectrum diagnoses in a state vary from the national pattern. To view additional information about diagnostic patterns, you can use Advanced StateStats.

The information presented is based on an analysis of responses from the question:

What was the child's FIRST autism spectrum disorder (ASD) diagnosis?

Parents are given the following choices:

• Autism or Autistic Disorder
• Asperger's Syndrome
• Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)
• Childhood Disintegrative Disorder (CDD)
• Pervasive Developmental Disorder (PDD) (choose only if none of the above apply)
• Autism Spectrum Disorder (ASD) (choose only if none of the above apply)

For purposes of this analysis, we refer to Autism or Autistic Disorder as Autism, Asperger’s Syndrome as Asperger, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) as PDD-NOS. The Other category includes the diagnoses of Childhood Disintegrative Disorder (CDD), Pervasive Developmental Disorder (PDD), and Autism Spectrum Disorder (ASD). We included ASD and PDD in our question because professionals sometimes give these diagnoses even though they are not formal diagnostic categories.

Remember, diagnosis data is reported by the parent and is not based on medical charts or on school reports.

Gender

Figure 2. Gender Distribution Sample

This chart shows the gender of the affected children in IAN Research. This chart is helpful in seeing how patterns in diagnosis in a state vary from nationwide patterns. This information is interesting because it may indicate that professionals are under- or over-diagnosing girls in a particular state and may be interesting to follow as gender-specific diagnosis strategies evolve.

Age at first diagnosis over time

Figure 3. Age at First Diagnosis Over Time Sample

This graph shows the median age in years that children receive their initial diagnosis. It is shown by the year that the diagnosis was given. This may be useful in figuring out how diagnostic practices change over time. But, that change may also reflect a change in awareness by families, schools, and health care providers.

The information presented is based on an analysis of responses from the questions:

• What was the child's FIRST autism spectrum disorder (ASD) diagnosis?
• When did the child receive this FIRST ASD diagnosis?

For more information, see How is age or lag time calculated?

Top Ten Treatments

Figure 4. Ten Top Treatments Sample Graph

Hundreds of autism treatments are currently in use . In many cases, there is little or no scientific evidence to support their effectiveness. Parents of children with ASD, driven to help their children and knowing time is of the essence, are unable to wait for answers. They find themselves trying a variety of remedies, often in the absence of adequate information. Many IAN parents have embarked on the uncertain territory of therapies: researching, choosing, evaluating, dropping treatments, adding treatments, and trying to find a combination that keeps their child calm, healthy, present, and able to learn and grow.

IAN Research asks parents to list the treatments and therapies that their child currently receives. The system provides an extensive controlled list of medications and other treatments and therapies. In addition, parents are able to list treatments and therapies that do not appear on that list. We then categorize these treatments and therapies carefully.

What do we mean by medications? We have included prescription drugs and over-the-counter drugs. Parents have submitted information on psychiatric (psychotropic) drugs including stimulants, neuroleptics, anticonvulsants, antidepressants, and anxiolytics. They have also submitted information on about 200 nonpsychiatric drugs. These nonpsychiatric medications range from antifungals (like Diflucan) to antibiotics, antihistamines, and laxatives.

In the future, we will include more information about the vast array of treatments and treatment practices of IAN Research participants, who have reported using over 400 different treatments (before categorization).

For more information, see How are the top ten treatments calculated?

Out-of-Pocket Treatment and Therapy Treatment Costs

Figure 6. Average Annual Overall Out-of-Pocket Expenses Sample

This graph shows the analysis of this data and breaks it down by current diagnosis.

For each treatment listed on the Treatment Questionnaire, IAN Research asks:

On average (in US dollars), how much do you pay for this treatment/therapy each month? How much are you still left responsible to pay after any insurance payment, educational subsidies, or public agency funding? (We understand that month-to-month payments may vary for a variety of reasons, so please give your best estimate of the monthly average.)

We ask families to update their information every 120 days. The median age of our data (treatment and current diagnosis) is six months.

To get a current diagnosis, IAN Research asks:

Is the child's CURRENT ASD diagnosis different than the FIRST? What is the child’s CURRENT ASD diagnosis? Remember, diagnosis data is reported by the families and is not based on medical charts or on school reports.

For more information see, How is average out-of-pocket treatment cost calculated?

Lag Time

Figure 7. Lag Time Sample

This graph shows the mean (average) amount of time in months between the time that parents first felt that something was wrong with their child’s development to the time that the child was first diagnosed with an ASD. Considering the vital importance of early intervention, this lag time (gap) between the time parents of children with ASDs recognize that something is wrong and when they are able to get a diagnosis is of interest to policy makers and advocates.

The information presented is based on an analysis of responses from the questions:

• How old was the child when you FIRST became concerned that something was wrong with his/her development? (Choices include a range of ages)
• What was the child's FIRST autism spectrum disorder (ASD) diagnosis?
• When did the child receive this FIRST ASD diagnosis?
• Approximately how old was the child when he/she received this FIRST ASD diagnosis?

For more information, see How is age or lag time calculated?

Using Advanced StateStats

Advanced StateStats allows you to create a page that contains a variety of charts, tables, and graphs that you can customize. You are able to select the indicators that you are interested in, the way you want the information displayed (chart, table, or graph), how you want to group the information, and the state that you want to compare to the US as a whole.

To use Advanced StateStats:

1. Go to http://dashboard.ianexchange.org/statestats.aspx.
2. Select Advanced.
3. From the State list, select the state that you want to evaluate.
4. Select one or more of the indicators. Descriptions of these indicators follows.
5. For each indicator that you select, from the pull-down list select the way that you want the information to display (table, chart, graph) and how you want to group the information.
6. Click the Show Results button.

Advanced StateStats displays the information in the format that you requested.

Advanced StateStats Indicators

Diagnosis

This indicator allows you to show information pertaining to first and current diagnoses. For more information, see How is first diagnosis or current diagnosis calculated?

Age at diagnosis, by year diagnosed

The information presented is based on an analysis of responses from the following questions:

• What was the child's FIRST autism spectrum disorder (ASD) diagnosis?
• When did the child receive this FIRST ASD diagnosis?

For more information, see How is age or lag time calculated?

Age at diagnosis by year of birth

The information presented is based on an analysis of responses from the question:

Approximately how old was the child when he/she received this FIRST ASD diagnosis?

Please note that information from the past five years should be interpreted carefully because younger children have not had as much time to develop symptoms and receive a diagnosis as older children. Therefore, numbers may be falsely lower from 2003 onward for this indicator.

For more information, see How is age or lag time calculated?

Age at diagnosis, unadjusted

The information presented is based on an analysis of responses from the following question:

Approximately how old was the child when he/she received this FIRST ASD diagnosis?

For more information, see How is age or lag time calculated?

Gender

Parents are asked to specify the child’s gender. This information is interesting because it may indicate that professionals are under- or over-diagnosing girls in a particular state.

Initial evaluators

The information presented is based on an analysis of responses from the following question:

Who gave the child this FIRST ASD diagnosis?

• Pediatrician
• Primary care doctor (other than pediatrician)
• Developmental pediatrician
• Psychiatrist
• Clinical Psychologist
• Neurologist
• Team of health professionals
• Team of professionals in a school system
• Speech and Language Pathologist
• Other (Please specify)

For the analyses, we combined psychiatrist, neurologist, clinical psychologist and developmental pediatrician into the Specialist category. We combined pediatrician and primary care doctor into the Pediatrician/FP/Primary Care Provider category.

Comorbidities

A comorbidity is another diagnosis in addition to ASD diagnosis.

The information presented is based on an analysis of responses from the following question:

• Has the child ever been diagnosed with Seizures or Epilepsy?
• Has the child ever been diagnosed with Mental Retardation?
• Has the child ever been diagnosed with a Motor Delay?
• Has your child ever been diagnosed with Cerebral Palsy (CP)?
• Has the child ever been diagnosed with or received treatment for Depression?
• Has the child ever been diagnosed with or received treatment for Bipolar Disorder (Manic/Depressive Disorder)?
• Has the child ever been diagnosed with or received treatment for Attention Deficit/Hyperactivity Disorder (AD/HD) or Attention Deficit Disorder (ADD)?
• Has the child ever been diagnosed with or received treatment for an Anxiety Disorder?
• Has the child ever been diagnosed with or received treatment for Schizophrenia?

Comorbidity data is reported by the parent and is not based on medical charts or on school reports.

Age at first concern

The information presented is based on an analysis of responses from the following questions:

• How old was the child when you FIRST became concerned that something was wrong with his/her development?
• If you remember, please give the child's exact age (in years and months) that you FIRST became concerned that something was wrong with his/her development.

For more information, see How is age or lag time calculated?

Lag time

The information presented is based on an analysis of responses from the following questions:

• Approximately how old was the child when he/she received this FIRST ASD diagnosis?
• How old was the child when you FIRST became concerned that something was wrong with his/her development?

For more information, see How is age or lag time calculated?

Treatment rank ("Top Ten")

Parents are asked what treatments and therapies their child currently receives. The system provides a controlled list from which parents may choose. They are also able to list treatments and therapies not on the list.

For more information, see How are the top ten treatments calculated?

Out-of-pocket treatment cost

The information presented is based on an analysis of responses from the following question: For each treatment listed on the Treatment Questionnaire, the parent is asked: On average (in US dollars), how much do you pay for this treatment/therapy each month? How much are you still left responsible to pay after any insurance payment, educational subsidies, or public agency funding? (We understand that month-to-month payments may vary for a variety of reasons, so please give your best estimate of the monthly average.) For more information, see How is average out-of-pocket treatment cost calculated?

StateStats Calculations

How is first diagnosis or current diagnosis calculated?

The information presented is based on an analysis of responses from the following questions:

What was the child's FIRST autism spectrum disorder (ASD) diagnosis?

Is the child's CURRENT ASD diagnosis different than the FIRST? What is the child’s CURRENT ASD diagnosis?
Parents are given the following choices:

• Autism or Autistic Disorder
• Asperger's Syndrome o Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)
• Childhood Disintegrative Disorder (CDD)
• Pervasive Developmental Disorder (PDD) (choose only if none of the above apply)
• Autism Spectrum Disorder (ASD) (choose only if none of the above apply)

For purposes of these analyses, we refer to Autism or Autistic Disorder as Autism, Asperger’s Syndrome as Asperger, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) as PDD-NOS. The Other category includes the diagnoses of Childhood Disintegrative Disorder (CDD), Pervasive Developmental Disorder (PDD), and Autism Spectrum Disorder (ASD).

Diagnosis information is reported by the parent and is not based on medical charts or on school reports.

How is age or lag time calculated?

For certain age-related questions, if parents responded with an exact age or date, we used that information. This is the unadjusted value. If the parents selected an age range instead of providing an exact age, we used the midpoint of the range. For example, if a parent chooses 6-12 months, we use the midpoint, 9 months. Use of the midpoint may lead to some errors, but the comparisons with national norms should be accurate in states that have a large number of responses because we treat the data the same way for every response.

How are the top ten treatments calculated?

IAN Research asks parents to list the treatments and therapies that their child currently receives. The system provides an extensive controlled list of medications and other treatments and therapies. In addition, parents are able to list other treatments and therapies. We then categorize these treatments and therapies carefully.

What do we mean by medications? We have included prescription drugs and over-the-counter drugs. Parents have submitted information on psychiatric (psychotropic) drugs including stimulants, neuroleptics, anticonvulsants, antidepressants, and anxiolytics. They have also submitted information on about 200 nonpsychiatric drugs. These nonpsychiatric medications range from antifungals (like Diflucan) to antibiotics, antihistamines, and laxatives.

After we categorized treatments, we counted the number of children who were using one or more treatments in each category. If a child was taking more than one treatment in a category, we counted him/her only once. For example, if a child was taking Diflucan, Risperdal, and Imodium, he/she would be counted only once in the Medications treatment category.

How is average out-of-pocket treatment cost calculated?

Many parents, especially those whose children were using numerous treatments and therapies, did not complete all of the questions about each treatment, including the questions pertaining to treatment cost. To decrease the error, we calculated treatment cost per child as follows:

1. Calculate the average number of treatments per child. For the state analyses, we use the average for that state. For the US analyses, we use the average for the US.
2. Calculate the average cost per treatment for those who reported treatment costs by taking total cost reported for all treatments and dividing by number of treatments with cost information. We do not include treatments that were reported to cost over $20,000 per month. For the state analyses, we use the average cost per treatment for that state. For the US analyses, we use the average cost per treatment for the US.
3. Multiply the average number of treatments per child by the average cost per treatment.

StateStats Tips

Using the Charts and Graphs in Your Documents and Presentations

You can copy and paste any of the charts and graphs and use them in documents or presentations in the following manner:

On a PC, right click on the chart or graph. From the menu, select Copy. In your document or presentation, right click where you want to place the chart or graph. From the menu, select Paste.

On a Mac, press the Ctrl key while you click on the chart or graph. From the menu, select Copy. In your document or presentation, press the Ctrl key while you click where you want to place the chart or graph. From the menu, select Paste.

Exporting Data into Microsoft Excel

Internet Explorer users who have Microsoft Excel installed on their computers may export the information in a table into Microsoft Excel. To export table data:

1. On a PC, right click on the table that you want to export. (On a Mac, press the Ctrl key while you click on the table.)
2. From the menu, select Export into Microsoft Excel. The system displays an Excel worksheet and pastes the information into that worksheet.

Figure 8. Information Exported to an Excel Worksheet

Citing IAN StateStats Charts, Graphs, and Tables

When you do use an IAN StateStats chart, graph, or table please include the following information in your presentation or document:

"Title of Graphic." Graphic Type. Copyright Holder.
Name of site providing graphic. Retrieved date retrieved URL of service's homepage. Data current as of date.

For example:

"Gender Distribution Among IAN Children With ASD." Chart. Kennedy Krieger Institute. Interactive Autism Network StateStats. Retrieved January 12, 2008 http://www.iancommunity.org/cs/for_researchers/ian_statestats, Data current as of January 11, 2008.

Comparing One State to Another

One way to compare one state to another is to display two browser windows and compare them side by side.

Figure 9. Comparing Missouri to Maryland

Displaying Additional Information

On charts and graphs, you can see the more information such as the total number of responses used in particular calculation. To view this information, move your mouse pointer over that slice of a pie chart or bar in a bar graph.

Figure 10. Mouse Over to View Additonal Information

Printing

In most cases, you can use the print function of your browser to print the charts and graphs. If some of the information is cut off of the page, try setting up the page so that it prints in landscape orientation. The procedure varies with printers and browsers.

Saving Advanced StateStats

Once you create a StateStats configuration that you would like to reuse, use the Bookmark or Favorites function in your browser to save it.

The next time you want to view that set of statistics (with current data), select it from your bookmarks or favorites list.

Sharing Advanced StateStats

If you have an Advanced StateStats configuration that you would like to share, copy the full web address from the address bar on your browser and paste it into an email to your friend or colleague.

Still Need Information?

Contact IANstats@kennedykrieger.org

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