As our children approach the age of puberty — a time that is perhaps dreaded and celebrated in equal measure — we as parents are looking for ways to better prepare for what’s to come. For kids with disabilities, puberty isn’t just about the body’s maturation and the talks we need to have about those changes; it’s also fraught with the challenges that come with growing up in bodies that are often disproportionately examined, exercised, and manually prompted and supported by therapists, doctors, paraprofessionals, aides, and (of course) family. The mere fact of these daily intrusions means we need to spend a lot more time making sure our kids understand their bodies and their boundaries. There is also the too-real fact of sexual abuse, which continues to affect children and young adults with disabilities at levels we just don’t talk about enough. And, of course, puberty can bring with it the beginnings of real interest in love and companionship. This is a big soup of issues, to put it mildly!
To help us approach some of these challenges, we reached out to Amy Machado (M.A., BCBA), CEO and clinical director of the SEEDS Therapy Center in San Diego. Be sure not to miss the wealth of resources shared by Machado as well as parents in our community at the bottom of this article!
"With this population, there’s so much focus on teaching daily living skills,” Machado tells us. While that’s obviously important, it’s just as important to start teaching the language and concepts of boundary awareness, as well as social and bodily autonomy. This should be integrated into everything we’re doing with our kids from an early age. And if you haven’t done it yet, you can start now! The important thing is to do this work before our kids become teens and early adults.”
Machado became interested in providing social-sexual education to kids and young adults with disabilities after more than 20 years as an ABA therapist, where she heard from too many distraught parents about some abuse that had occurred. “I started in early intervention,” Machado tells us. “About nine years ago, I started working with teens and young adults. I was looking for programs specific to puberty, and I couldn’t find anything, so I was winging it. I knew how important it was to teach about consent, and nobody was teaching it to these kids. Parents would come to me (especially parents of teens), and by the end of the intake conversation when I’d ask what else I needed to know, I’d get this answer describing some abuse, and it was heartbreaking and it made me angry. I got angry enough that I decided to do something about it.”
SEEDS (Self-Esteem Education & Development in Sexuality) was founded in 1987 by a nurse, Stacy Everson, out of a deep interest in helping young people with disabilities prepare for healthy and meaningful relationships. Machado joined forces with SEEDS just as Everson was hoping to retire. The curriculum they developed focuses on helping kids and young adults with disabilities understand the growth and maturation process associated with puberty and preparing them for healthy, safe relationships. “The myth about disability is that our kids can’t have relationships, or don’t want relationships, or that they don’t understand relationships,” Machado says. “That’s totally false. We want them to have these relationships, and to do that, we need to educate them. One of the things I kept seeing with the young adults I worked with is that people were still telling them where to go, what to do, and who to do it with. These kids never had any choice in the matter. We’re taking all that autonomy away from them, and that means they’re losing the opportunity to have relationships and all kinds of other things.”
Kids with disabilities are not taught sex ed in schools
According to the Guttmacher Institute, 38 states currently require that sex education be taught in schools. While this may sound like a positive statistic, only 9 of those states require that consent be taught as part of the curriculum. Worse, none of those states require that sex ed be taught to students in special education classes, leaving a very big gap that needs to be filled. “In California,” Machado tells us, “sex ed is mandated by law for neurotypical kids, but our kids are not getting it. If they spend some part of their day in gen ed, they may be present for the class, but a lot of it is over their heads because the curriculum is not adapted to their learning style.”
She adds, “The numbers are staggering when you look at the amount of abuse experienced by people with intellectual and developmental disabilities. Ultimately, our kids need to understand their own bodies, how they grow and mature and interact with others. They need to understand that boundaries change with every single person you interact with.”
Many of the teens and young adults who come to SEEDS have been abused by people they know and trust; for Machado, this demonstrates that as parents (and society at large), we’re not giving our kids the information and tools they need to identify what’s appropriate and what’s inappropriate. “They’re engaging in inappropriate boundaries themselves because nobody ever taught them,” she says. “They don’t understand that it’s okay to touch their own body but that you don’t do it on the bus. You don’t talk about your period with the 7-11 clerk. One of the things we teach parents is to stop thinking about ‘the sex talk’ as a one-time event. It needs to start early, and we need to have lots of talks over time.”
Thoroughly talking about and prepping for these changes, along with the necessary added norms of using menstrual products, can help young girls with disabilities manage expectations and new feelings that arise from starting their period. Hormonal changes that affect emotions and thoughts can feel out of their control and be difficult to understand. In this clip, Dr. Stutman describes how parents can help their kids cope with premenstrual syndrome (PMS) symptoms, whether it be period pain or changing moods:
Dr. Stutman further explains that she’s had kids say, “Well, that’s really upsetting because then how do I trust myself? How can my thoughts be wrong?” While it all depends on a child’s developmental age, she says, “Everybody has cognitive distortions, but if you are wise enough to rise above your thinking and do metacognitions — think about your thinking — you’re sane enough to know that the thought is irrational. That’s even more sane than somebody who’s just walking around having rational thoughts all the time. You’ve been primed to be able to ‘name it to tame it,’ and then say, ‘Wow, I was aware’, and shift behavior based on that.”
For some, the use of birth control to suppress periods may be a viable option if nothing else is working to soothe anxiety and the disruption of daily life. Dr. Stutman explains: “I've seen girls with autism who are so thrown from their periods and the hormonal shifts that it has such a deep and profound impact on their mental health and their social relationships. It's just a cost benefit analysis. If it's impacting your quality of life and you've tried other things, then I'm supportive of [suppressing periods]. There are risks, but there are definitely risks to having your whole life turned upside down every month, such as destroying social relationships and feeling isolated, leading to depression. So I am supportive of that if everything else has been tried.”
Are you concerned about whether your child might face difficulties in managing their periods, or are you worried about how they will handle periods when the time comes? Many of our parents have found that period underwear is a great solution for children with disabilities! For an affordable option that offers a variety of choices for juniors and adults, check out The Period Company.
As parents, teaching the basics about privacy and the concepts of public and private are critical. “This can be taught at any age,” Machado says. “I taught my daughter at two. I also work with adults who have never been taught the difference. We teach that there are public and private places, public and private body parts, public and private talk, and public and private behavior. And while the behavior component is generally taught at a G or PG level, we can also teach it at a more advanced level for people who are in relationships.”
So how do you do this, exactly? The first thing SEEDS teaches — to both the kids and young adults they work with, and in their parent-training workshops — is the difference between public and private places. “The goal is to make it as concrete as possible. It can be as easy as playing a game. Get a pack of pink and yellow sticky notes and walk through the house with your child. Put yellow sticky notes throughout the house in shared spaces, and as you do, say ‘This is a public place.’ The only private place you have is your bedroom, so this is where the pink sticky note goes. We can work on that for a long time. When the door is open, it’s not private. When the blinds are open, it’s not private. The UPS guy can see in your window. If we close the blinds and the door, now it’s private. The private space is anywhere you can be naked for a long time. Yes, we get naked in the shower, but most of us don’t have a private bathroom — we share it. You can’t just stay in there for hours if you want to; somebody else will need to come in eventually. The concept is that your bedroom is your private place, a place where you can get naked and do private things, where we can have a talk about private things. But you can’t get naked and run through your living room when you’re seventeen.”
To teach difficult concepts, SEEDS uses a lot of visuals such as photographs and graphics to show different social situations. ”When we talk about boundaries and consent, for example, we might show a picture of a family embracing and say that it’s okay for family members to hug each other,” Machado says. “But we also need to teach our kids about consent. They should understand that if they don’t want to be hugged by a family member, that’s okay. We start by telling them, ‘You are the most important person in your life. That means it doesn’t matter who you’re with — you have control over whether you get touched or not.’”
It’s also important to help kids and young adults understand what is appropriate when they are being assisted in the restroom, for example. “In our family lesson, we talk about ‘helping touches’ in the shower and the restroom,” Machado says. She explains that they use the same phrase in their lesson on support staff (acquaintances), since these are also the people providing "helping touches" in the bathroom. “Most of the kids we work with need help in the shower and with toileting,” she says, “so it’s important to teach them that if a ‘helping touch’ lasts too long or makes them uncomfortable or sad or scared, then it’s not okay. We need to make it as concrete as possible.”
We can start teaching these concepts with our kids now by modeling the appropriate behavior in the bathroom. “For example, I ask my daughter, ‘Can I help you wipe?’” Machado says.“It’s as simple as that. We’re trying to teach them what is expected and what is appropriate, so if somebody crosses those boundaries, they will know that’s not okay. They will know to think, ‘Mom always asks me if it’s okay before she does this. Mom always wears gloves.’ Teaching them these boundaries early helps build prevention.”
It’s important to help kids understand that the boundaries we have with family will be different from the boundaries we have with friends and strangers. “We don’t teach ‘stranger danger’ at SEEDS because every single one of us interacts with strangers every day,” Machado says. “Let’s not teach kids to make fear-based decisions — let’s give them information. Is it okay to ask the time? Of course. If you bump into somebody in the grocery store, do you look away? No, you say ‘I’m sorry.’ Knowledge is power — the protection model has been operating for decades and it’s not working.”
Machado tells us that the highest risk for abuse is by someone we know, usually an acquaintance — so it’s very important to talk with our kids about the trusted people in their lives, and to help them understand the difference between an acquaintance and a friend. “We teach children that their teacher, therapist, and school aide are not their friends — they’re paid to be there,” Machado tells us. This is something that as parents, many of us unintentionally get wrong. We might refer to the speech therapist or the long-time school aide as a friend, but this is teaching our kids a lesson we don’t intend. While we may like and trust our kid’s teachers and therapists, we need our kids to understand that even trusted people in their lives are not family or friends. And because they’re acquaintances, it’s okay to shake their hand or give a high-five or a fistbump, “and maybe a side hug if you’re comfortable with that person,” Machado says, “but a front hug is not okay.”
To help our kids understand that we see friendly people all the time, but they are not our friends, Machado says, we also need to explain the difference between “friend” and “friendly.” She says, “We teach kids that there are four requirements for being a friend, which gives them concrete parameters to navigate some very tricky social boundaries and discriminate between expected and unexpected behavior. Just because someone is being friendly toward you does not make them your friend. If we tell our kids that the respite worker is their friend and that they care about them, the kid might think, ‘Well, they’re my friend and they care about me, so we can have this little secret.’”
Behavioral changes to look for
Machado says that unfortunately, many parents come to SEEDS when they suspect something has already happened. And while it is impossible to say how any child might react to abuse because each child and situation is different, she advises parents to stay alert to behaviors that are out of the ordinary. “Maybe kids are suddenly wanting distance from somebody they normally liked or felt comfortable around before,” she says. “Maybe they’re experiencing a drastic change of behavior in dress or routines. I’ve worked with kids who all of a sudden started to lock the bathroom door and didn’t want anybody to help them in the bathroom. So it’s specific to each child, but usually we see dramatic changes in behavior, or a change in attitude toward a certain person. But there are a lot of nuances — to make a blanket statement about what to look for can be counterproductive. We focus on teaching, prevention, being super proactive, and giving our kids as much information as possible. Ultimately, this is about helping them live healthy, fulfilling lives.”
As defined by the American Psychiatric Association (APA), gender dysphoria “refers to psychological distress that results from an incongruence between one’s sex assigned at birth and one’s gender identity.” To help us understand how to best support our kids who experience gender dysphoria, we spoke with Associate Marriage & Family Therapist Kevin Graves, MS, at CARE-LA.
There are two different forms of gender dysphoria: the clinical diagnosis of Gender Dysphoria in the Diagnostic and Statistical Manual (DSM-5 TR) and non-clinical gender dysphoria. As Graves describes it, “Someone can have levels of gender dysphoria and not meet the full criteria for the diagnosis. Both are an incongruence between the sex you were assigned at birth and the gender that you feel inside that you know yourself to be. And what happens from that, in some people but not all, is an extreme dysphoric state because the experience can be extremely distressing.''
While gender dysphoria is quite real and possibly debilitating, not every gender diverse person identifies as having gender dysphoria. Some folks experience gender euphoria about their chosen gender but may still meet diagnostic criteria for the diagnosis of Gender Dysphoria (DSM-5-TR) and/or Gender Incongruence (ICD-11).
The DSM-5-TR defines gender dysphoria differently in children, adolescents, and adults. While this dysphoric state may not occur until puberty or later in life, many of those who experience conflict between one’s assigned sex and gender identity begin in childhood. A more dysphoric state can arise with the onset of pubertal changes due to the start of developing sex characteristics of the gender they were assigned at birth, which can be traumatic.
The way Graves describes this feeling is by asking those who are cisgender (those whose gender identity aligns with the sex assigned to them at birth) to “imagine what it would be like for you to go through pubertal changes of the opposite sex. What would that experience be like for you?” For example, if you are a cisgender woman and you had to go through male pubertal changes, what would that feel like?
Another reason for onset pubertal dysphoria is the rise of importance to stop these changes. If a child was assigned male at birth but they identify as a trans girl, stopping the onset of a deepening voice or facial hair can create an urgency that maybe wasn’t there before puberty. As for all adolescents, individuation can cause someone to be very self-conscious. As Graves describes, it’s a natural period of testing boundaries and questioning who we are. Adolescents may see other peers experiencing the same feelings they are and feel more comfortable to disclose their experience. On the other hand, adolescents who feel unsafe to express how they feel may experience extreme anxiety that amplifies this dysphoric state.
Graves says that unfortunately, gender dysphoria in kids with disabilities can be intensified by lack of affirmation: “There’s this social stigma that they deal with on a daily basis of being infantilized for their disability. Some medical providers or caregivers might just assume that someone with a disability doesn’t have the capacity or agency to say for sure that they are transgender. And because of this infantilization, I think it can be really difficult for folks with disabilities who are gender diverse.”
In need of some advice on how to help your child who may be experiencing gender dysphoria? Listen to this clip where Graves provides comfort and advice for helping our kiddos.
The Trevor Project, an American nonprofit organization that focuses on suicide prevention among lesbian, gay, bisexual, transgender, queer, and questioning youth, describes asexuality as a person who “does not experience, or experiences very little, sexual attraction and/or does not desire sexual contact.” Since “sexual attraction is only one type of attraction, a person can still be physically or emotionally attracted to someone including engaging in romantic activities such as dating, falling in love, or getting married. Therefore, any asexual person can also be straight, gay, lesbian, queer, or any other sexual or romantic orientation.“ In general, Graves describes it as an overall lack of interest or lack of attraction to sex. Aromanticism is similar, yet instead of sexual orientation, it is characterized as a romantic orientation. A person who is aromantic is someone who experiences little to no romantic attraction, or they do not desire any romantic relationship.
As Graves explains, based on their experience and research, a lot of people with disabilities are seen as or assumed to be asexual. “Sometimes people are asexual and have disabilities, and that's okay. Unfortunately, because of the stigma around sexuality and disability, there can be a lack of access to care. Health care providers may have limited knowledge of gender-affirming care, or some might see adolescents or teens with a disability and assume they are asexual, and may not offer STI testing to them.” This can be harmful as their peers will be offered STI testing, condoms, and learn about safe sex while those with disabilities will not.
Graves continues, “I think there's a lot of stigma to break through. I also wonder if parents might not be having conversations with their kids [with disabilities] about sex.”
Graves offers advice for parents when speaking to their kids about topics of gender identity, sexuality, and expression:
LGBTQIAP2S+ Youth + Parents
Crisis lines
We asked Amy Machado as well as our community of parents on the street to share books and resources they’ve found helpful in preparing their kids for puberty.
Book recommendations from Amy Machado:
1) What’s Happening to Tom? A book about Puberty for Boys and Young Men with Autism and Related Conditions, by Kate E. Reynolds
Written for boys aged 10–17, the book uses plain language and frank but humorous illustrations to discuss the physical and emotional changes that boys experience during puberty.
2) What’s Happening to Ellie? A Book about Puberty for Girls and Young Women with Autism and Related Conditions, by Kate E. Reynolds
Written for girls aged 10–17, the book uses plain language and frank but humorous illustrations to discuss the physical and emotional changes that girls experience during puberty.
3) The “What’s Happening to My Body” Book for Boys, by Lynda Madaras
Written and illustrated for neurotypical boys 10 and up, the author collaborated with her daughter to create “sensitive straight talk” (with detailed drawings) about what happens during puberty and beyond, covering everything from wet dreams to STDs and birth control.
4) The “What’s Happening to My Body” Book for Girls, by Lynda Madaras
Written and illustrated for neurotypical girls 10 and up, the author collaborated with her daughter to create “sensitive straight talk” (with detailed drawings) about what happens during puberty and beyond, covering everything from periods to anorexia to STDs and birth control.
5) It’s OK to Be You: A Frank and Funny Guide to Growing Up, by Claire Patterson and Lindsay Quilter
Written for boys and girls ages 8–12, this book uses humor and cartoon characters to talk about the changes that happen to both girls and boys entering puberty; while its focus is on acceptance, reviewers note it is less culturally inclusive and comprehensive than other books on the subject.
Recommendations from author and Undivided friend Amy Silverman:
6) Teaching Children with Down Syndrome about their Bodies, Boundaries, and Sexuality, by Terri Couwenhoven
Written for parents of children with Down syndrome and other intellectual disabilities by a parent of a child with Down syndrome who is also a sex educator, this acclaimed book offers insightful conversations and teaching activities to use in talking with our kids about puberty, sexuality, relationships, boundaries and privacy, and more.
Recommendations from fellow Undivided mom Karen Cull:
7) The Boys Body Book: Everything You Need to Know for Growing Up YOU, by Kelli Dunham and Steve Björkman
Written (and illustrated) for boys 10 and up, the book focuses on staying true to yourself during the changes brought by puberty, from what’s happening to the body to dealing with emotions and peer pressure.
8) It's Perfectly Normal: Changing Bodies, Growing Up, Sex, and Sexual Health, by Robie H. Harris and Michael Emberley
For boys and girls ages 10–13, “playful and realistic” illustrations accompany discussions on “nearly every imaginable question” kids have from conception to adoption, and what it means to grow up to be healthy and responsible for ourselves and our bodies.
9) VIDEO: Dating, Sex, Marriage. OH MY!!! Sex, Romantic and Other Social Relationships
This talk was given at a 2017 UCEDD conference by SEEDS founder Stacy Everson, RN, and covers the “do’s and don’ts in the big relationship we call love,” and how to help our kids have safe relationships.
Machado tells us that SEEDS has been working overtime to digitize their curriculum so it’s more readily available to parents and teachers alike. “The more people we can help, the better,” she says. “I love what I do, and my long-term mission is to take this to Sacramento. My dream for SEEDS is to have our curriculum be available to anybody and everybody. I believe this information should be available to every child in every single school district. Every teacher should be teaching it to every kid with a disability.”
We are 100% behind Amy Machado’s dream, and all the work she and her team do every day to prepare our kids for the kinds of loving, respectful relationships they deserve. Thank you, Amy!
