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Gender and sexuality in autism, explained

Gender, like autism, exists on a spectrum. In the 1990s, as growing numbers of children sought care related to their gender identity, clinicians and researchers began to notice a trend: An unexpected number of these children were autistic or had autism traits. The observation has spurred researchers to work to quantify the association.

The field is beginning to get a clear picture of the extent to which the two spectrums overlap: Gender identity and sexuality are more varied among autistic people than in the general population, and autism is more common among people who do not identify as their assigned sex than it is in the population at large — three to six times as common, according to an August study1. Researchers are also making gains on how best to support autistic people who identify outside conventional genders.

Here we explain what scientists and clinicians know — and don’t know — about gender and sexuality in autistic people.

What is gender identity?
Gender identity is a person’s internal sense of their own gender. People who identify as the sex they were assigned at birth are called ‘cisgender,’ or cis, whereas those who do not may use terms such as transgender, nonbinary or gender fluid. Researchers often use the phrase ‘gender diverse’ as an umbrella term for different gender identities, similar to the way some people use ‘neurodiverse’ to describe variations in cognitive style, including autism and attention deficit hyperactivity disorder.

How common is gender diversity among autistic people?
Many studies have examined the prevalence of gender diversity among autistic people. One of the most frequently cited studies found that about 15 percent of autistic adults in the Netherlands identify as trans or nonbinary; the percentage is higher among people assigned female at birth than among people assigned male, a trend seen in other studies2. By contrast, less than 5 percent of adults in the Netherlands’ general population have an identity other than cisgender3. And in a 2018 study in the United States, 6.5 percent of autistic adolescents and 11.4 percent of autistic adults said they wished to be the gender opposite of what they had been assigned at birth, compared with just 3 to 5 percent of the general population4. This study also found that, on two measures of autism traits, higher scores were associated with a higher likelihood of gender diversity. A 2019 study found a similar association in children who are not diagnosed with autism5.

Similarly, autism appears to be more prevalent among gender-diverse people than it is in the general population. A 2018 Australian survey of transgender adolescents and young adults found that 22.5 percent had been diagnosed with autism, compared with 2.5 percent of all Australians. Some experts estimate that 6 to 25.5 percent of gender-diverse people are autistic6.

Sexuality also appears to be more varied among people with autism than among those who do not have the condition. Only 30 percent of autistic people in a 2018 study identified as heterosexual, compared with 70 percent of neurotypical participants7. And although half of 247 autistic women in a 2020 study identified as cisgender, just 8 percent reported being exclusively heterosexual8.

Why is the prevalence of gender diversity higher in autistic people than in the general population?
Social experiences are likely a main component, experts say. Compared with neurotypical people, autistic people may be less influenced by social norms and so may present their internal selves more authentically. “You could then understand the co-occurrence as perhaps a more honest expression of underlying experiences,” says John Strang, director of the Gender and Autism Program at Children’s National Hospital in Washington, D.C.

It’s possible that autistic people may come to conclusions about their sexual identity differently than neurotypical people do, says Jeroen Dewinter, senior researcher at Tilburg University in the Netherlands. Some autistic people have told him they would be likely to identify as bisexual after one same-sex sexual experience, but neurotypical people may be less likely to adopt that terminology based on a single same-sex encounter.

Biological factors may also play a role. Exposure levels to hormones such as testosterone in the womb may be linked to autism, some research shows; increased prenatal testosterone may also lead to more typically ‘male’ behaviors and to less common sexualities and gender identities, although there is some evidence against that link9,10. Regardless, prenatal testosterone does not explain why autistic people assigned male at birth might identify as more feminine, Dewinter says. But the biology of sexuality and gender in the general population is not well understood either.

Experts say it’s likely that a combination of these and other factors contribute to the increased variety of gender identities and sexualities among autistic people.

What does this mean for clinicians and caregivers?
Clinicians who work in gender clinics may want to screen for autism, and those working in autism clinics may want to discuss gender identity and sexual health, researchers say. They should also be sensitive to different information processing styles, Dewinter says. Some autistic people may struggle to express their feelings regarding gender. Even when they do express these feelings, they often face doubts from clinicians because of stereotypes about autistic people, which can block their access to medical care. In a 2019 paper, one autistic and gender-diverse person wrote, “The combination is seen to be too complex for the majority of clinicians, which led to long waiting times for specialized psychiatric care”11.

Screening tools may also need to be updated to better identify autism among gender-diverse children, just as they need to be adjusted to spot the condition among girls. “Clinics are working to understand what autism looks like in girls and women, and we’re going to have to take that same question with the gender-diverse youth,” Strang says. Identifying autistic children who may need support in affirming their identity is particularly important because some may seek medical interventions, such as puberty blockers, that are time-sensitive, he says.

Clinicians should be aware that autistic people may present their gender identity differently than neurotypical people do. Some autistic people who transition from one gender to another are not aware of how they also need to change their social cues, such as how they dress, if they want to clearly communicate their gender identity to others. Clinicians can help autistic people navigate these transitions and ensure they have the same access to gender-affirming medical care that neurotypical people have, says Aron Janssen, associate professor of psychiatry and behavioral sciences at Northwestern University in Chicago, Illinois.

How do autistic people best learn about gender and sexuality?
For years, many parents and caregivers believed that autistic people, particularly those with intellectual disability, shouldn’t be given information about sexuality and are less interested in relationships than neurotypical people are, Dewinter says. That belief is changing as researchers recognize that providing relationship support is important to ensure the overall well-being of neurodiverse people, just as it is for neurotypical people. Belonging to any kind of minority group makes a person more susceptible to mental health problems, because of a phenomenon known as ‘minority stress.’ For a person who is both neuro- and gender-diverse, belonging to several minority groups can intensify those problems12.

More comprehensive and inclusive sex education can help. In ongoing surveys, Eileen Crehan, assistant professor of child study and human development at Tufts University in Medford, Massachusetts, has found that autistic people want information about sexual orientation and gender identity more than typical people do. Research has shown that lesbian, gay, bisexual, transgender and queer/questioning (LGBTQ+) adolescents who have more inclusive sex education in school have better mental health. But only 19 percent of U.S. sex-education materials are LGBTQ+ inclusive, according to the advocacy group GLSEN, creating an extra barrier for autistic LGBTQ+ people. “You have two hoops to jump through to get the information that you need,” Crehan says.

Where is the research going next?
Early research focused on measuring the prevalence of diverse gender identities in the autism community — and vice versa — but now researchers are increasingly turning to questions about how best to support autistic people who are gender-diverse. To do that, they’re working closely with the autistic community, ensuring autistic people guide research priorities. “I really think it’s incredibly important to lift up the voices in the community themselves, and I’m grateful to see that’s where the field is going,” Janssen says.

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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.