Most Children with ASD Diagnosed After Age 5, Use Multiple Services and Medications

25 May

A study just out from US National Institute of Mental Health researchers analyzes a survey they performed. Even today half of sad children identified are not diagnosed until after age 5. Half of autistic school age kids are using some form of psychotropic medicine.

The study is discussed here:

Most Children with ASD Diagnosed After Age 5, Use Multiple Services and Medications

And that discussion is quoted below:

Fewer than one out of five school-aged children with special health care needs were diagnosed with autism spectrum disorder (ASD) by age 2, according to new data from an NIMH-funded study. These diagnoses were made by a variety of health care providers, and most children in the study used multiple health care services (such as speech or language therapy) and multiple medications.


Identifying ASD at an early age allows children to start treatment sooner, which can improve their later development and learning, and may also reduce a child’s need for specialized services or treatments later in life.

To determine the experiences of school-aged children with special health care needs, Lisa Colpe, Ph.D., M.P.H., and Bev Pringle, Ph.D., of the NIMH Division of Services and Intervention Research, collaborated with colleagues who conducted more than 4,000 telephone interviews with parents or guardians of a child between the ages of 6-17 who had a confirmed diagnosis of ASD, intellectual disability, and/or developmental delay.

These survey interviews were a part of the Pathways to Diagnosis and Services Study, sponsored by NIMH using funds available from the American Recovery and Reinvestment Act of 2009 (Recovery Act). Additional collaborators on this project include the National Center for Health Statistics at the Centers for Disease Control and Prevention (CDC) and the Maternal and Child Health Bureau at the Health Resources and Services Administration (HRSA).

Results of the Study

Key findings include:
The median age when school aged children with special health care needs and ASD were first identified as having ASD was 5 years.
Those identified as having ASD at younger than 5 years were diagnosed most often by generalists (such as pediatricians, family physicians, and nurse practitioners) and psychologists. Those identified later than 5 years were diagnosed primarily by psychologists and psychiatrists.

Nine out of ten school-aged children with special health care needs and ASD used at least one health care service, such as behavioral intervention or modification services, sensory integration therapy, cognitive based therapy, occupational therapy, physical therapy, social skills training, or speech or language therapy.

Social skills training and speech or language therapy were the most commonly used service, each used by almost 60 percent, or three out of five, of these children.

More than half of school-aged children with special health care needs and ASD used at least one psychotropic medication. “Psychotropic medication” refers to any medication used to treat a mental disorder.
Almost 33 percent of these children used stimulant medications
25 percent used anti-anxiety or mood-stabilizing medications
20 percent used antidepressants.

Further findings are available in the NCHS Data Brief and Frequently Asked Questions.

The new data detail the experiences of young children with ASD, describing when they are first identified as having ASD, who is making those identifications, and the services and medications the children use to meet their developmental needs.

What’s Next
NIMH encourages researchers to access and analyze the new dataset to produce more studies on the early life experiences and the diagnostic, service, and treatment issues relevant to children with ASD and special health care needs. The Pathways to Diagnosis and Services Study dataset can be accessed at

Pringle BA, Colpe LJ, Blumberg SJ, Avila RM, Kogan MD. Diagnostic History and Treatment of School-Aged Children with Autism Spectrum Disorder and Special Health Care Needs. NCHS data brief, no 97. Hyattsville, MD: National Center for Health Statistics. 2012.

2 Responses to “Most Children with ASD Diagnosed After Age 5, Use Multiple Services and Medications”

  1. Roger Kulp May 25, 2012 at 14:32 #

    It’s obvious from reading the Data Brief linked in the Update that the children studied here had a lot of comorbid issues besides autism.(Figure 2 and figure 4.)I would think such children would be identified before they got to school.Unless they were from low income families,or others without proper access to health care.This important piece of information seems to be missing.

    The .pdfs linked on the SLATIS page
    Tell you a lot more.It seems these children did have a lot of comorbids

    What variables were suppressed to protect confidentiality of Pathways participants?
    • NCHS takes extraordinary measures to assure that the identity of survey subjects cannot be disclosed. The risk of inadvertent disclosure of confidential information regarding individual respondents is higher with a publicly released data set having detailed geography variables, a detailed and extensive set of survey observations, and a sizeable proportion of the total population of interest. Coarsening a data set by suppressing survey variables, collapsing multiple variables into one, and/or collapsing response categories for other variables are common techniques to reduce the risk of inadvertent disclosure. These techniques have been applied to the publicly available Pathways microdata file to reduce the risk of inadvertent disclosure for children with severe functional limitations, heavy use of clinical services, or unusual patterns in their diagnostic history and service utilization:

    •The ages when the child was first diagnosed with ADHD (DE_ADD2),depression (DE_DEP2),anxiety (DE_ANX2),or behavioral problems (DE_BEH2) have been released only as dichotomous variables indicating that the age of first diagnosis was either 1) before the diagnosis of ASD, or 2) at the same age as or later than the diagnosis of ASD. (The variable is missing if the child did not have a diagnosis of ASD.) The same derived “relative age” variables have also been created relative to the age of first diagnosis with intellectual disability and developmental delay, if the child had ever been diagnosed with those conditions.

    o Information about genetic screening, including whether screening confirmed or revealed any condition (DE18) and the specific condition confirmed (DE19), is suppressed. Whether or not genetic screening occurred (DE17) is available on the public use file.

    The 136 page .pdf linked here

    Click to access pathways_formatted_freqs.pdf

    is very interesting.

    Poverty level income is mentioned as a factor,in about 20% of those surveyed (Page 17).

    Page 5 mentions why the children were not diagnosed before they started school.The reasons might tie in,given the substandard quality of doctors low income people often see.

    The responses,further on,about the child’s symptoms improving,or going away,in my mind would raise doubts about some of these children who were diagnosed as toddlers and preschoolers.

    I find some of the questions very interesting,and highly applicable to myself as a child.Especially the ones like not doing required homework.I didn’t know this was a recognized problem in ASDs.

  2. DoctrSally May 27, 2012 at 15:02 #

    Oh hi everyone *waves* Haven’t been here in AGES! Just checking in to see how my peeps R doo’in. Can’t BELIEVE the trolling that goes on here. My land sakes! Good news, Hortense’s hip replacement went really well and she can go back to being a prostitute stunt double after 2 mos. healing time. Shamus graduated from counterfeiting school and we have a new illegal domestic whose willing to work for tic tacs! Hay y’all! Have a great Memorial Holiday.

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