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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.

Join ASAN Seattle in Protesting the Judge Rotenberg Center at the ABAI Convention!

24 May

The Autistic Self Advocacy Network (ASAN) is organizing a protest against the Judge Rotenberg Center.

On Sunday, May 27th, the Association for Behavior Analysis International (ABAI) is holding their annual convention in the city of Seattle, Washington. As they have many times in the past, ABAI is allowing the Judge Rotenberg Center (JRC) to exhibit at their convention this year.
The Judge Rotenberg Center’s use of contingent electric shock, food deprivation, mechanical restraint and other “aversives” have been called out as abusive on multiple occations. In 2010, their practices were  declared torture by the United Nations, which then asked the US government to intervene.  Recent civil litigation has led to renewed media attention from sources ranging from the Boston Globe to Anderson Cooper’s television shows. The United States Department of Justice has targeted the Judge Rotenberg Center in an ongoing investigation of their abusive practices. For decades, disability rights advocates have worked towards one simple goal: shut the Judge Rotenberg Center down.

Still, ABAI hasn’t gotten the message: the Judge Rotenberg Center’s use of torture in the name of treatment should never be given a platform. ABAI needs to disavow the Judge Rotenberg Center and other facilities which use abusive treatments.

The Autistic Self Advocacy Network’s Seattle chapter is mobilizing to tell ABAI that when it comes to the torture of disabled children and adults, the time has come for them to pick a side, condemn the Judge Rotenberg Center and stop giving them a platform.

When: Sunday, May 27th, 2012 at 12 NOON PDT

Where: Washington Convention & Trade Center Downtown

800 Convention Place, Seattle, WA 98101-2350

RSVP on Facebook

With pending legislation in New York and Massachusetts, we are closer now than ever before to ending the Judge Rotenberg Center’s torture of our people. Please show up to the protest and invite others to attend with you.

Places like the Judge Rotenberg Center count on the world not caring about people with disabilities to survive. They count on on society’s unwillingness to open its eyes and see Americans with disabilities as equal citizens deserving of equal rights. This Sunday, let’s prove how wrong they are. Let’s make sure our voices are heard.

Ari Ne’eman
The Autistic Self Advocacy Network

Autism Advocacy: Developing New Markets

23 May

Autism Speaks is hiring. You can find their job posts on the Web. Nothing surprising about that. Here is a segment from a recent job post:

Autism Speaks is the world’s largest autism science and advocacy organization, dedicated to funding global biomedical research into the causes, prevention, treatment and cure for autism. We currently have a rewarding (new) career opportunity available for an experienced Area Director – South Florida (Miami, Palm Beach, Broward) to join our growing organization.

The selected individual will be responsible for driving revenue through walks and events, strengthening existing markets and identifying and developing new markets. Must be experienced in staff management and volunteer leadership development. This position reports to the Executive Director – South Florida Chapter, which is based in Miami, FL.

Let me highlight the phrase that caught my eye: “…strengthening existing markets and identifying and developing new markets”.

Before people start talking about “big Autism” and all, that’s not really my point. More my own naivety. We’d like to think of Autism Speaks’ walk-a-thons and other fundraising as being organized by the communities. But this is a $50M a year charity. That’s just not going to happen with an all volunteer organization.

Are you happy with what the $50M/year organization does? That is another question.

Student placed in cardboard box for time out, others called mentally retarded in their yearbook

22 May

Two stories out today show

In the first (see Teacher gets lengthy suspension after student put in box) as part of a “time out” punishment. A large cardboard box was found in a classroom. When a parent asked what the box was for, she was told that the box was for time outs for another child. The parent took a picture to document the box. Good thing as shortly afterwards the box was removed.

According to the story that goes along with the video:

A middle school special education teacher accused of forcing a child with special needs into a cardboard box as punishment has been suspended without pay.

In another school-related story, a high school in Texas handed out year books that cited the disabilities of the special education students attending, including referring to some as mentally retarded:

The specific disabilties of students were cited in the yearbook, with some labeled as “both blind and deaf, as well as mentally retarded,” KDFW reported.

The yearbooks were collected and new ones are being issued.

note: this was edited after publication to improve the formatting of this article on the main LBRB page.

ASAN: URGENT! Ask Your Senators to Support a Ban on Aversives!

21 May

The Autistic Self Advocacy Network has called an urgent action alert to call for the ban of aversives in the state of Massachusetts, home of the Judge Rotenberg Center. Residents of Massachusetts can call their state senators and support legislation that could stop the use of aversives.

Ask Your Senators for a
Ban on Aversives in Massachusetts!

Last Friday, Massachusetts State Senator Brian Joyce filed two amendments to the Senate Ways & Means Budget currently pending in the Massachusetts State Senate. One of these amendments calls for a complete ban of aversives – also called “aversive therapy” – while the other would restrict their use. If passed, this would ban or limit the use of practices like the contingent electric shock used at the Judge Rotenberg Center (JRC).

But it takes more than one senator to get an amendment passed. We urge you to contact your Massachusetts State Senator and ask him or her to sign on to the Joyce amendments banning or restricting the use of aversives. But please hurry, the deadline has been extended to noon (12pm EST) on May 23rd!

You can find your Senator’s phone number or email at Because of the urgent deadline, calling their office will be the most effective way to contact them.

Thank you for your support for the rights and safety of Autistics and other people with disabilities in the great state of Massachusetts.

Nothing About Us, Without Us!

Autistic Self Advocacy Network

TPGA: IMFAR 2012: An Update on the ASD DSM-5 Recommendations

19 May

There is much discussion on the DSM 5 at IMFAR. This includes talks from Sue Swedo at the stakeholder’s lunch and a formal (and highly attended) conference talk The Thinking Person’s Guide to Autism has four of their editors at the conference and has an article on the DSM 5 discussion.

IMFAR 2012: An Update on the ASD DSM-5 Recommendations

We spoke with Sue [Swedo] at length both at the IMFAR Stakeholder’s lunch, and after her IMFAR talk. Any errors or omissions in this summary of her talk are on TPGA. -SR

More at the TPGA site.

Some first-hand reports from IMFAR

18 May

Here are some reports that have been written on IMFAR so far. IMFAR is a three day conference, with one pre-conference day. Saturday (tomorrow) is the last day.

Thinking Person’s Guide to Autism

IMFAR 2012: Genetic Variants in ASD

IMFAR 2012: On Communicating Autism Science

Autism: Friendships in Adolescence from IMFAR 2012

IMFAR 2012 Press Conference

Autism Science Foundation

Reactions from IMFAR Travel Grantees: Day 2

Reactions from IMFAR Travel Grantees: Day 1

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Edit to add:

Here’s an article by Estee Klar:
My First Impressions of IMFAR 2012

I hope to have some articles by autistics soon.