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Autism prevalence in the United States explained

Editor’s Note

This article was originally published in March 2017. It has been revised to reflect more recent research.

The prevalence of autism in the United States has risen steadily since researchers first began tracking it in 2000. The rise has sparked fears of an autism ‘epidemic.’ But experts say the bulk of the increase stems from a growing awareness of the condition and changes to its diagnostic criteria.

Here’s how researchers track autism’s prevalence and explain its apparent rise.

How do clinicians diagnose autism?
There is no blood test, brain scan or any other objective test that can diagnose autism — although researchers are actively trying to develop such tests. Clinicians rely on observations of a person’s behavior to diagnose the condition.

In the U.S., the criteria for diagnosing autism are laid out in the Diagnostic and Statistical Manual of Mental Disorders (DSM). The criteria are problems with social communication and interactions, and restricted interests or repetitive behaviors. Both of these ‘core’ traits must be present in early development.

What is the prevalence of autism in the U.S.?
The Centers for Disease Control and Prevention (CDC) estimates that 1 in 54 children in the U.S. has autism1. The prevalence is 4.3 times higher among boys than girls.

How does the CDC arrive at this number?
CDC researchers collect health and school records for 8-year-old children who live in select U.S. counties. These researchers are part of the Autism and Developmental Disabilities Monitoring Network, which the CDC set up in 2000 to estimate autism prevalence.

Every two years, trained clinicians scan the records for signs of autism features, such as social problems or repetitive behaviors. They focus on 8-year-olds because most children are enrolled in school and have had routine health assessments by that age2. They then decide whether each child meets the criteria for autism, even if the child does not have a diagnosis, and extrapolate the results to all children in the state.

The most recent prevalence estimates are based on data collected in 2016 from sites in 11 states. At some of the sites, clinicians also surveyed the records of 4-year-old children. The data suggest that autism prevalence among preschoolers is increasing and mirrors both the rise and the overall prevalence among 8-year-olds.

The CDC is also launching a pilot program to look at autism in adolescents. Its researchers plan to review the records of 16-year-olds who were identified as having autism traits at age 8.

How has autism prevalence changed over time?
The latest estimate of autism prevalence — 1 in 54 — is up 10 percent from the 1 in 59 estimate, based on data collected in 2014, and is more than double the 1 in 150 figure reported in 2000. In fact, the trend has been steeply upward since the early 1990s, not only in the U.S. but globally, says Maureen Durkin, who heads the network site in Wisconsin.

How accurate is the CDC’s approach?
The strength of the approach is that it takes a snapshot of all children who live in a certain area, not just those who have a diagnosis, according to Eric Fombonne, professor of psychiatry at Oregon Health and Science University in Portland. But, he notes, relying on school and medical records is not as accurate as assessing a child in person.

The approach also misses children who have no school or medical records, including some who are home-schooled or live in isolated regions. And children within the monitored areas may not be representative of all children in a state. Reported prevalence for autism can also vary dramatically between states, probably reflecting varying levels of autism awareness and of services offered.

Two national surveys conducted in 2016 — in which researchers asked parents whether a healthcare provider had ever told them their child has autism — turned up a higher estimate of the condition’s prevalence: 1 in 40. However, parent surveys are generally considered less reliable than the CDC’s approach.

Has our definition of autism changed over the years?
How people think about and diagnose autism has changed substantially since the diagnosis was first introduced more than 75 years ago. In 1943, Leo Kanner first coined the term ‘infantile autism’ to describe children who seemed socially isolated and withdrawn.

In 1966, researchers estimated that about 1 in 2,500 children had autism, according to criteria derived from Kanner’s description3. This and other early estimates of prevalence probably focused on children at the severe end of the spectrum and missed those with subtler features.

Autism didn’t make its debut in the DSM until 1980. In 1987, a new edition expanded the criteria by allowing a diagnosis even if the traits became apparent only after 30 months of age. To garner a diagnosis, a child needed to meet 8 of 16 criteria, rather than all 6 of the previous items4. These changes may have caused the condition’s prevalence to tick above 1 in 1,4005.

Then, in 1991, the U.S. Department of Education ruled that a diagnosis of autism qualifies a child for special education services. Before this time, many children with autism may instead have been listed as having intellectual disability. The change may have encouraged families to get a diagnosis of autism for their child. The number of children who have both a diagnosis of autism and intellectual disability has also risen steadily over the years6.

In 1994, the fourth edition of the DSM broadened the definition of autism even further, by including Asperger syndrome on the milder end of the spectrum. The current version, the DSM-5, was released in 2013, and collapsed autism, Asperger syndrome and pervasive developmental disorder-not otherwise specified into a single diagnosis.

Some researchers have suggested that the DSM-5’s criteria for autism diagnosis are more stringent and may lower autism prevalence. The most recent CDC estimate of autism prevalence is based on the fifth edition of the DSM.

Has the rising awareness of autism contributed to the prevalence?
Increased awareness of autism has undoubtedly contributed to its rise in prevalence, according to experts.

Until the 1980s, many people with autism were institutionalized, rendering them effectively invisible. Studies show that parents who are aware of autism’s presentation — by living near someone with the condition, for example — are more likely to seek a diagnosis for their children than parents with no knowledge of the condition. Living close to urban centers and having access to good medical care also boost the likelihood of diagnosis.

Greater awareness of autism is also likely to boost CDC estimates by increasing the chances that autism traits, such as lack of eye contact, show up in school and medical records, says Fombonne.

Policy changes may have also played a role. In 2006, the American Academy of Pediatrics recommended screening all children for autism during routine pediatrician visits at 18 and 24 months of age. This move may have led to diagnoses for children who would otherwise have slipped under the radar.

Are there other factors that have influenced prevalence?
Many individuals diagnosed with autism may previously have been misdiagnosed with other conditions, such as intellectual disability: As diagnoses of autism have risen, those of intellectual disability have decreased.

What’s more, a diagnosis of autism gives children greater access to specialized services and special education than do diagnoses of other conditions. This benefit makes clinicians more likely to diagnose a child with autism, even those who are on the borderline of the clinical criteria.

Prior versions of the DSM did not allow for children to be diagnosed with both autism and attention deficit hyperactivity disorder. The DSM-5 allows multiple diagnoses, and most children with developmental delay are routinely screened for autism.

Autism prevalence has traditionally been highest among white children in the U.S, but this is starting to change. African-American and Hispanic children are underrepresented in prevalence studies because of missing health and residency records. They also have lower rates of diagnosis because of a lack of access to services. However, widespread screening has improved detection of autism in these groups and has raised overall prevalence.

Is there no real increase in autism prevalence, then?
Awareness and changing criteria probably account for the bulk of the rise in prevalence, but biological factors might also contribute, says Durkin. For example, having older parents, particularly an older father, may boost the risk of autism. Children born prematurely also are at increased risk of autism, and more premature infants survive now than ever before.

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Autism prevalence in the United States explained

Editor’s Note This article was originally published in March 2017. It has been revised ...

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Compleat KiDZ

THIS NOTICE DESCRIBES HOW MEDICAL INFORMATION ABOUT YOU MAY BE USED AND DISCLOSED AND HOW YOU CAN GET ACCESS TO THIS INFORMATION. PLEASE REVIEW IT CAREFULLY.

If you have any questions about this Notice of Privacy Practices, please contact our Privacy Officer, by telephone at (704) 824-7800 or in writing at 2675 Court Drive, Gastonia, NC 28054.
This Notice of Privacy Practices describes how we may use and disclose your protected health information to carry out treatment, payment or health care operations and for other purposes that are permitted or required by law. It also describes your rights to access and control your protected health information. Protected health information is information about you, including demographic information, that may identify you and that relates to your past, present or future physical or mental health or condition and related health care services.

A. WE MUST PROTECT YOUR PROTECTED HEALTH INFORMATION

We are required to abide by the terms of this Notice of Privacy Practices. We may change the terms of our Notice of Privacy Practices at any time. The new Notice of Privacy Practices will be effective for all protected health information that we maintain at that time. Upon your request, we will provide you with any revised Notice of Privacy Practices. You may request a revised version by calling or writing our Privacy Officer and requesting that a revised copy be sent to you in the mail or asking for one at the time of your next appointment.

B. USE AND DISCLOSURES OF PROTECTED HEALTH INFORMATION

Your protected health information may be used and disclosed by our office staff others outside of our office who are involved in your care and treatment for the purpose of providing health care services to you.
Your protected health information may also be used and disclosed to pay your health care bills and to support the operation of our practice.
Following are examples of the types of uses and disclosures of your protected health information that we are permitted to make. These examples are not meant to be exhaustive, but to describe the types of uses and disclosures that may be made by our office.

1. Treatment: We will use and disclose your protected health information to provide, coordinate, or manage your health care and any related services. This includes the coordination or management of your health care with another provider.
For example, we would disclose your protected health information, as necessary, to a home health agency that provides care to you. We will also disclose protected health information to other healthcare providers who may be treating you.
For example, your protected health information may be provided to a physician to whom you have been referred to ensure that the physician has the necessary information to diagnose or treat you. In addition, we may disclose your protected health information from time-to-time to other health care providers (e.g., a specialist or laboratory) who become involved in your care by providing assistance with your health care diagnosis or treatment to us.
2. Payment: We may use and disclose protected health information about you so that the treatment and services you receive at Compleat KiDZ may be billed to and payment may be collected from you, an insurance company, or a third party. This may include certain activities that your health insurance plan may undertake before it approves or pays for the health care services we recommend for you such as: making a determination of eligibility or coverage for insurance benefits, and reviewing services provided to you for medical necessity. For example, if you have a back injury, we may need to give your health plan information about your condition, supplies used, and services you received.
3. Healthcare Operations: We may use or disclose, as needed, your protected health information for healthcare operations. These uses and disclosures are necessary to run Compleat KiDZ and make sure that all of our patients receive quality care. For example, we ma)'use protected health information to review our treatment and services and to evaluate the performance of our staff in caring for you. We may also combine protected health information about many patients to decide what additional services Compleat KiDZ should offer, what services are not needed, and whether certain new treatments are effective. We may also disclose information to doctors, nurses, technicians, medical students, and other personnel for review and learning purposes, we may remove information that identifies you from this set of protected health information so others may use it to study health care and health care delivery without learning the identities of specific patients.
We may share your protected health information with third party "business associates" that perform various activities (for example, billing or transcription services) for our practice. Whenever an arrangement between our practice and a business associate involves the use or disclosure of your protected health information, we will have a written contract that contains terms that will protect the privacy of your protected health information.
We may use and / or disclose protected health information to contact you to, remind you about an appointment you have for treatment or medical care.
We may use or disclose your protected health information, as necessary, to provide you with information about treatment alternatives or other health--related benefits and services that may be of interest to you. You may contact our Privacy Officer to request that these materials not be sent to you.
4. Other Permitted and Required Uses and Disclosures That May Be Made Without Your Authorization or Opportunity to Agree and Object:
We may use or disclose your protected health information in the following situations without your authorization or providing you the opportunity to agree or object. These situations include:
(i) Required by Law: We may use or disclose your protected health information to the extent that the use or disclosure is required by law. The use or disclosure will be made in compliance with the law and will be limited d to the relevant requirements of the law. You will be notified, if required by law, of any such uses or disclosures.

(ii) Public Health: We may disclose your protected health information for public health activities and purposes to a public health authority that is permitted by law to collect or receive the information. For example, a disclosure may be made for the purpose of preventing or controlling disease, injury or disability.

(iii) Communicable Diseases: We may disclose your protected health information, if authorized by law, to a person who may have been exposed to a communicable disease or may otherwise be at risk of contracting or spreading the disease or condition.

(iv) Health Oversight: We may disclose protected health information to a health oversight agency for activities authorized by law, such as audits, investigations, and inspections. Oversight agencies seeking this information include government agencies t-rat oversee the health care system, government benefit programs, other government regulatory programs and civil rights laws.

(v) Abuse or Neglect: We may disclose your protected health information to a public health authority that is authorized by law to receive reports of child abuse or neglect. In addition, we may disclose your protected health information if we believe that you have been a victim of abuse, neglect or domestic violence to the governmental entity or agency authorized to receive such information. In this case, the disclosure will be made consistent with the requirements of applicable federal and state laws.

(vi) Legal Proceedings: We may disclose protected health information in the course of any judicial or administrative proceeding, in response to an order of a court or administrative tribunal (to the extent such disclosure is expressly authorized), or in certain conditions in response to a subpoena, discovery request or other lawful process.

(vii) Law Enforcement: We may also disclose protected health information, so long as applicable legal requirements are met, for law enforcement purposes, these law enforcement purposes include (1) legal processes and otherwise required by law, (2) limited information requests for identification and location purposes, (3) pertaining to victims of a crime, (4) suspicion that death has occurred as a result of criminal conduct, (5) in the event that a crime occurs on the premises of our practice, and (6) medical emergency (not on our premises) and it is likely that a crime has occurred.

(viii) Research: We may disclose your protected health information to researchers when their research has been approved by an institutional review board that has reviewed the research proposal and established protocols to ensure the privacy of your protected health information.

(ix) Criminal Activity: Consistent with applicable federal and state laws, we may disclose your protected health information, if we believe that the use or disclosure is necessary to prevent or lessen a serious and imminent threat to the health or safety of a person or the public. We may also disclose protected health information if it is necessary for law enforcement authorities to identify or apprehend an individual.

(x) Military Activity and National Security: When the appropriate conditions apply, we may use or disclose protected health information of individuals who are Armed Forces personnel (1) for activities deemed necessary by appropriate military command authorities; (2) for the purpose of a determination by the Department of Veterans Affairs of your eligibility for benefits, or (3) to foreign military authority if you are a member of that foreign military services. We may also disclose your protected health information to authorized federal officials for conducting national security and intelligence activities, including for the provision of protective services to the President or others legally authorized.

(xi) Workers' Compensation: We may disclose your protected health information as authorized to comply with workers' compensation laws and other similar legally established programs.
5. Other Permitted and Required Uses of Disclosures That Require Providing You the Opportunity to Agree or Object
We may use and disclose your protected health information in the following instances. You have the opportunity to agree or object to the use or disclosure of all or part of your protected health information. If you are not present or able to agree or object to the use or disclosure of the protected health information, then we may, using professional judgment, determine whether the disclosure is in your best interest.

Others Involved in Your Health Care or Payment for our Care:

Unless you object, we may disclose to a member of your family, a relative, a close friend or any other person you identify, your protected health information that directly relates to that person's involvement in your health care. If you are unable to agree or object to such a disclosure, we may disclose such information as necessary if we determine that it is in your best interest based on our professional judgment. We may use or disclose protected health information to notify or assist in notifying a family member, personal representative or any other person that is responsible for your care of your location, general condition or death. Finally, we may use or disclose your protected health information to an authorized public or private entity to assist in disaster relief efforts and to coordinate uses and disclosures to family or other individuals involved in your health care.
6. Uses and Disclosures of Protected Health Information Based upon Your Written Authorization Other uses and disclosures of your protected health information will be made only with your written authorization, unless otherwise permitted or required by law as described below. You may revoke this authorization in writing at any time. If you revoke your authorization, we will no longer use or disclose your protected health information for the reasons covered by your written authorization. Please understand that we are unable to take back any disclosures already made with your authorization.
C. YOUR RIGHTS
Following is a statement of your rights with respect to your protected health information and a brief description of how you may exercise these rights
1. You have the right to inspect and copy your protected health information
This means you may inspect and obtain a copy of protected health information about you for so long as we maintain the protected health information. You may obtain your medical record that contains medical and billing records and any other records that we use for making decisions about you. As permitted by federal or state law, we may charge you a reasonable copy fee for a copy of your records.
2. You have the right to request a restriction of your protected health information
This means you may ask us not to use or disclose any part of your protected health information for the purposes of treatment, payment or health care operations. You may also request that any part of your protected health information not be disclosed to family members or friends who may be involved in your care or for notification purposes as described in this Notice of Privacy Practices. Your request must state the specific restriction requested and to whom you want the restriction to apply.

We are not required to agree to a restriction that you may request. If we agree to the requested restriction, we may not use or disclose your protected health information in violation of that restriction unless it is needed to provide emergency treatment. With this in mind, please discuss any restriction you wish to request with your health provider.

You may request a restriction by making your request in writing to our Privacy Officer. In your request, you must tell us (1) what information you want to limit; (2) whether you want to limit our use, disclosure, or both; and (3) to whom you want the limits to apply, for example, disclosures to your spouse.
3. You have the right to request to receive confidential communications from us by alternative means or at an alternative location
We will accommodate reasonable requests. We may also condition this accommodation by asking you for information as to how payment will be handled or specification of an alternative address or other method of contact. We will not request an explanation from you as to the basis for the request. Please make this request in writing to our Privacy Officer.
4. Your may have right to amend your protected health information
This means you may request an amendment of protected health information about you in a designated record set for so long as we maintain this information. In certain cases, we may deny your request for an amendment. If we deny your request for amendment, you have the right to file a statement of disagreement with us and we may prepare a rebuttal to your statement and will provide you with a copy of any such rebuttal. Please contact our Privacy Officer if you have questions about amending your medical record.
5. You have the right to receive an accounting of certain disclosures we have made, if any, of your protected health information This right applies to disclosures for purposes other than treatment, payment or health care operations as described in this Notice of Privacy Practices. It excludes disclosures we may have made to you if you authorized us to make the disclosure, to family members or friends involved in your care, or for notification purposes, for national security or intelligence, to law enforcement (as provided in the privacy rule) or correctional facilities, as part of a limited data set disclosure. The right to receive this information is subject to certain exceptions, restrictions and limitations.
6. You have the right to obtain a paper copy of this notice from us
upon request, even if you have agreed to accept this notice electronically.
D. COMPLAINTS
You may complain to us or to the Secretary of Health and Human Services if you believe your privacy rights have been violated by us. You may file a complaint with us by notifying our Privacy Officer of your complaint. We will not retaliate against you for filing a complaint

You may contact our Privacy Officer at (704) 824-7800 for further information about the complaint process.

This notice was published and becomes effective on August l, 2011.