Sex education for individuals with autism spectrum disorder

Child's drawing of a train with "autism is a journey" written below

Sexuality education is not limited to one class you took in high school but is instead a lifelong process.  For individuals with autism spectrum disorder (ASD) learning about sexuality can be more difficult, but that does not mean that it is less necessary.  I believe all people have the right to quality sex education.  When it comes to educating individuals with ASD, there are several things to keep in mind including, but not limited to, communication issues and social skills.

What is autism spectrum disorder?

Autism spectrum disorder refers to a group of developmental brain disorders.  The impairment an individual diagnosed with ASD experiences can range from mild to severe; this is the very reason it is a spectrum.   Social impairment, difficulties with communication, and repetitive behaviors are common symptoms of ASD.  Symptoms can vary from person to person, as well as in severity.

The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V) revised the diagnosis of ASD in 2013.  In their previous edition (DSM-IV), patients could be diagnosed with four different disorders as ASD.

  • Autistic disorder
  • Asperger’s disorder
  • Childhood disintegrative disorder
  • Pervasive developmental disorder otherwise specified

In the new DSM-V patients must show symptoms from early childhood to be diagnosed with ASD.  This new diagnostic criteria will allow older individuals to be diagnosed after symptoms become evident, as well as allowing diagnosis at a younger age.  This is a change from the previous diagnostic criteria that was geared for school-age children.

For this post we will be discussing how sexuality education can be beneficial for individuals with communication issues and social skills impairment.  Symptoms are vast, however, so every person with ASD can be impacted differently and therefore would benefit from an individual, tailored approach.

Is sexuality education necessary?

Sexuality education can be stressful and unpleasant for anyone.  Adding in social impairment and communication issues only makes this type of education more challenging.  The key here is challenging, but not impossible.

Far too often educators see sexuality education for individuals with ASD as unnecessary and too complex.  Some may think that there is no desire for sexual intimacy or that the knowledge would not be useful, but some individuals who are diagnosed with ASD do experience sexual desires and wish to pursue interpersonal relationships. Sullivan and Caterino (2008) believe these desires by individuals with ASD merit their inclusion into sexuality education.

Proactive education may be helpful in addressing some of the problems faced by individuals with ASD in regards to relationships and sexuality.  Education can also be useful for decreasing the chance for abuse of the individual.  It is important that education takes place before dangerous, offensive, or inappropriate behavior occurs.  Educators can give students, and caregivers, the tools they may need before they are necessary or before it is too late.

Sexuality education 

Truth be told, there has been little research into sexuality education for individuals with ASD.  This is an area of human sexuality that is deserving of more attention.  With a deficient in quality research, Sullivan and Caterino (2008) suggest using teaching skills that have proven effective in other domains for the purposes of sex education.  Adaptive behavior is one such technique that has proven helpful for students with ASD and could be applied to the specific topic of sexuality.

According to Dr. Gerhardt, the goals of sexuality education for individuals with ASD should include: providing accurate information and the development of personal values and social competence.  These goals are not likely to be achieved overnight and will take multiple lessons and great time investment.

Topics covered should be developmentally appropriate and timed when developing a lesson plan.  When students begin masturbating, for example, a discussion on private versus public behaviors may be appropriate.  A hierarchy of skills can be followed to facilitate education ensuring it occurs at suitable times and in effective sequences.  It would not be apt to discuss ejaculation and pregnancy before the student has learned some anatomy.  Teaching within the zone of proximal development, or using scaffolding, is crucial.  You should be educating past independent learning, something the student can do on their own, to more advanced topics that the student can understand when collaborating with the educator or peers.  Using this technique the student should later be able to independently work on the topic they previously collaborated with another person on, allowing them to move on to collaborating the someone on a more complex topic.

Vygotsky's Zone of Proximal Development
Vygotsky’s Zone of Proximal Development

Language can create a strong barrier when discussing sex.  There are many different terms used for anatomy and actions.  When educating, make sure that both you the educator and the students are speaking the same language.  This means that both parties are in fact talking about the same thing.  Do not assume that anything is common vocabulary or obvious.  This also means avoid using euphemisms and sarcasm as they may be misinterpreted.

The use of anatomical models, or dolls, may be very useful for individuals in learning about appropriate touch and social behaviors.  These anatomical models could also aid in developing a greater understanding of bodily hygiene and appropriate terms for body parts.

Anatomy dolls (anatomically correct genitalia)
Some individuals with ASD will attend to irrelevant stimuli.  Try to decrease this stimulus in order to help students focus on the material you are presenting.  Make what you want the students to attend to obvious.

Involving caregivers is extremely important to the success of education.  These individuals may understand the struggles or issues the student is facing and be better able to verbalize them to you.  Caregivers can be used as educators within the home.  Keeping a consistent message between school and home life will increase the chances of successful educational interventions and future behavior change.

Sex educators should educate themselves on some techniques they can apply in the classroom to reach students with ASD.  Teaching individuals proper sexual health, relationships, social cues, and sexual behaviors may significantly alter the quality of life for those who wish to pursue others romantically or sexually but have not felt prepared or comfortable in doing so.

Interested in learning more about ASD? Check out the Autism Society Blog.  Looking for some lesson plans and resources for students with ASD? Autism Sex Education or AHEAD may be of interest.

 

References

Sullivan, A. & Caterino, L. C. (2008). Addressing the Sexuality and Sex Education of

Individuals with Autism Spectrum Disorders. Education and Treatment of Children, 31(3), 381-394.

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4 responses to “Sex education for individuals with autism spectrum disorder

  1. I absolutely LOVE that you chose this topic to write about. I feel that these students are often overlooked, especially when it comes to sex education. You provided a lot of helpful information and really challenged me to think about my own ideas of sex education. One thing I kept thinking of is the parents of children with ASD. From my experience, parents tend to be extremely overprotective of children with ASD, and sometimes I feel that they may hold them back. You mentioned the importance of working with the parents and caregivers, but what if the parents aren’t willing to allow you to approach their child with sexual education. Because students with ASD are socially awkward, some parents may treat their child like they are actually younger than what they are. Do you have any advice on how to handle this challenge?

  2. I’m ashamed to say I know very little about ASD. I think this is an incredibly important conversation we should be having. You mentioned parents/caregivers’ tendencies to hold back children with ASD and generally see them as younger. I imagine this might be a tendency among instructors as well. I know that most ASD students in my public high school were part of the special education program where teachers need to have training (which may or may not effectively prepare them to work with ASD). However, the students in this program were not in specialized health classes which is where the “sex education” occurred – and I know for sure those teachers were not adequately trained in ASD awareness. Your post encouraged me to reflect on that very sad reality. It sounds like there is more than enough room for some research on autism and sexuality education.

  3. This is such an important topic and I am so glad that you wrote about it! As someone who works in child welfare, I regularly hear allegations of suspected sexual abuse of children on the spectrum. It is extremely frustrating that individuals on the spectrum are “passed over” when it comes to sexuality education, because they are more vulnerable to abuse and need to have a basic understanding (and vocabulary, if possible) to describe sexual behaviors and communicate about their own anatomy.

    The commenter above discussed their experience with parents of children with ASD often being overprotective of their children. I am so happy to hear this (despite the potential roadblocks to sexuality education) because my experience has been the complete opposite. Many parents are unable or unwilling to provide the extra care and attention that is required to ensure the safety and well-being of their child with ASD. Sometimes this is due to frustration with their child’s behaviors, stress due to caring for multiple children (which is often compounded by being the sole caretaker for the children, or because other children in the home also have special needs), limited knowledge of their child’s condition, or co-occurring stressors, such as financial problems, domestic violence, substance abuse, or mental health issues.

    Children with ASD often receive services from multiple providers (Early Intervention, Occupational Rehabilitation, Physical Therapy, Therapeutic Staff Support, Mobile Therapy, Behavioral Health Rehabilitative Services, Behavioral Specialist Consultant Services,, Intensive Case Management, and/or In-home nursing/medical services). Managing all of the services and providers would be challenging for the most attentive parent. When a parent is also facing other difficulties, it is easy to lose track of who is providing services to the child and to keep a close eye on “red flags” of potential abuse. Compounding this issue is the high turnover rate for caseworkers and service providers (especially those who are para-professionals, as they are often receiving little support, guidance, or training from their agencies, while juggling heavy caseloads).

    The factors listed above, combined with varying communication limitations, place children with ASD at much greater risk for abuse. When we neglect to provide appropriate sexuality education to children with ASD, we are contributing to this risk. Parents, legislators, schools, service providers, and healthcare professionals need to be reminded of this and encouraged to advocate on behalf of the education of all children with ASD.

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