The Social Needs of Women on the Autism Spectrum

Current research on adults with Autism Spectrum Disorder (ASD) without intellectual disability suggests that outcomes for adult women with ASD are especially poor relative to those of men (Taylor, Henninger, & Mailick, 2015). These findings stand in sharp contrast to recent findings that women and men with primary ASD are largely similar in symptom presentation (Van Wingjngarden-Cremers et al., 2014) and that in some affected women, the condition may be milder (Wilson et al., 2016). What then explains these differences in outcomes? Are there particular challenges for women on the autism spectrum that are currently being overlooked? What are the necessary supports for their success?

From the Perspective of Women with ASD

As part of the development of Felicity House, a new program for adult women with ASD, focus groups with key stakeholders were conducted to identify the specific needs of this population. Women on the autism spectrum were invited to discuss their perceptions of the sex differences in ASD, their experiences of being on the spectrum, and their sense of the current gaps in services. The resulting discussion highlighted the current gaps in community-based adult programs.

The focus group participants immediately commented on how “different” and “nice” it was to be in a room full of women on the spectrum. Many shared that this was a first for them. This then was the re-occurring theme of the meeting: that women with ASD often feel “alone” and like a minority within a minority group. The women explained that their efforts to socialize often lead to feeling “misunderstood” and “lonely” because they frequently are the only person with ASD or the only female with ASD in a given social scenario. A number of the focus group participants further noted that their social interaction “style” has been consistently at odds with those of their male peers, making their minority status particularly problematic. Additionally, as a result of being the token female in group activities designed for adults with ASD, the women often receive unwanted sexual attention.

 

“If autism is a form of the extreme male brain, where does that leave women with autism?”

 

“There’s…a disconnect between what society expects of women with ASD and what we can do.”

 

“In the support groups for ASD, it’s either get hit on or be seen as an alien!”

 

“I don’t know how to meet people.”

 

“I’ve had bad (social) experiences.”

 

Most striking was that the participants quickly zeroed in on the lack of social activity as their chief need. Rather than describe the limited availability of clinical services and employment opportunities for adults, the women made a point to describe all of the social opportunities they had as students and contrast this with their experiences as adults. Participants identified social programming specific to women with ASD as most needed, specifically a safe space to pursue leisure interests and build social experiences. Many of the women reflected on their own social and communication challenges, the difficulties involved in interacting with same-age women without ASD, and their interest in building their social experience in the context of a supportive system.

 

“At [college name], we had a group where we would play games…so just to have that again!”

 

“I have been looking for programs…with people who are serious about music, drawing, creative writing. “

 

“We need opportunities to build “real” social connections…”

 

“…led by someone without ASD, to be able to stop (us) from speaking too much, making sure everyone has a turn”

 

“Activities with structure, like using Roberts Rules or something…to help us know when to talk”

 

“For young women with ASD to not feel alone or different and to have space (a place) to belong to, for once!”

The Literature on Women’s Experiences

The experiences reported by the women in the focus group are consistent with the research on typical social development and gender-based risks to mental health. First, the level of skill required for social participation is significantly higher for females than for males. Starting in the early adolescent years, girls are expected to be adept in relationship building skills not required of boys (Hannah and Murachver, 1999). Society also places greater social demands on women that go beyond specific skills. As noted by a recent article in the Spring 2016 issue of Autism Spectrum News by Dr. Milot, the current social culture exerts unique pressures on adult women to take on caretaking roles and conform to particular expressions of femininity (Milot, 2016). Such patterns of socialization create added challenges for women on the spectrum. As a result, the social gaps between non-affected females and females with ASD are greater than they are for their male counterparts.

Beyond gender-based differences in socialization, a not so insignificant challenge for women with ASD is that they are more likely to have been diagnosed later in life than their male peers (Begeer et al., 2013). Such differential access to formal diagnoses is concerning because it means less access to services and intervention, which in turn, increases the risk for mental health problems that are already heightened for the female gender (Kessler et al., 1994). Indeed, as compared to typically developing girls, those diagnosed with ASD exhibit significantly more internalizing symptoms such as anxiety and depression (Jamison & Schuttler, 2015).

Supporting Adult Women with ASD

As expressed by our focus group participants, adult women with ASD are lacking social opportunities that are inclusive of their needs and interests. As opposed to didactic activities, the women described a need for a community of their own where they can share and build experiences. To provide this, it is not sufficient to simply gather women with ASD together. Program structures that take into account the effects of social information processing difficulties are required. In this respect, ideal supports are those based on principles of Universal Design, such as incorporating a design for activities that make them adaptable with respect to pace and complexity. The latter requires a careful use of visual supports; the goal is to supplement verbal information when necessary, without overusing visual cues that can confuse or distract the participant. All in all, this approach requires much pre-planning, opportunities for ongoing revisions of programmatic practices, and consultation with professionals who have expertise working with adults with ASD.

Due to the heterogeneity of ASD, another important program element involves anticipating the variety of social communication needs that can occur with this condition. At the group level, this can be accomplished via a menu of programs that caters to diverse needs, including experiences that are rich in opportunities for discussion as well as those designed for participants who are more interested in doing than talking. Programming content should also be informed by the experiences and interests of the women. Differences in social motivation are also important factors that affect participation. Thus, identifying special interests, as well as previous negative experiences, is essential at the individual level. Additionally, programs will require participation and staffing models that can account for changing mental health needs. As best practice, this involves highly individualized participation plans and mechanisms for fostering thoughtful discussions with each participant around their social goals and mental health needs.

How Does Felicity House Meet These Unique Needs?

Established in 2015, Felicity House is a non-clinical program designed to support the social development of women with a diagnosis of ASD. The program has dedicated space with a design that accommodates large and small group activities, as well as rooms designed to provide restorative, quiet activities. Participation plans are flexible and individualized; they are uniquely informed by a new member process which includes a series of meetings and interviews between a woman and staff member, along with ongoing follow-up as needed. Programming is varied and consists of structured events such as lectures, workshops, and special interest groups, as well as social routines like movie nights and open hours. Each event is supported by at least one staff member and all activities include modifications with an eye towards facilitating participation.

Special consideration is given to the fact that Felicity House exclusively serves adults, and programming reflects the maturity and sophistication of adult women. Activities are chosen based on participant interest and the feedback collected at each event. Staff meet regularly to review and revise the content and design of the program activities and participants are included in this process through a monthly program-wide leadership meeting where Felicity House participants share ideas, offer feedback and troubleshoot issues that may affect participation.

To make the program accessible, participation is at no cost to the women. There is no requirement of functional limitations for inclusion. On the contrary, the goal at Felicity House is to provide support for women who are able and ready to increase their social participation, including those that may not be able to access state-funded resources due to eligibility thresholds.

What Have We Learned?

The needs of women with ASD are made complex by gender-specific expectations of social participation, minority status within the ASD population, later access to a formal diagnosis, and increased rates of anxiety and depression; all of which ultimately may lead to poorer outcomes than their male peers. Increased availability of social programs designed specifically for women with ASD is needed and they may be an important mechanism to improving outcomes. However, such programs must take into account the complex needs and heterogeneity of the population, and there is still a great deal to be learned about how to best support women to meet their social needs.

 

In addition to her role as Senior Advisor at Felicity House, Marisela Huerta, PhD, is an Assistant Professor of Psychology in Psychiatry at Weill Cornell Medical College and an Attending Psychologist at NewYork-Presbyterian/Center for Autism and the Developing Brain. For more information about Felicity House, please visit www.felicity-house.org.

References

Begeer S, Mandell D, Wijnker-Holmes B, et al. (2013) Sex differences in the timing of identification among children and adults with autism spectrum disorders. J Autism Dev Disord 43: 1151-1156.

Hannah A and Murachver T. (1999) Gender and Conversational Style as Predictors of Conversational Behavior. Journal of Language and Social Psychology 18: 153-174.

Hiller RM, Young RL and Weber N. (2014) Sex differences in autism spectrum disorder based on DSM-5 criteria: evidence from clinician and teacher reporting. J Abnorm Child Psychol 42: 1381-1393.

Jamison TR and Schuttler JO. (2015) Examining social competence, self-perception, quality of life, and internalizing and externalizing symptoms in adolescent females with and without autism spectrum disorder: a quantitative design including between-groups and correlational analyses. Mol Autism 6: 53.

Kessler RC, McGonagle KA, Zhao S, et al. (1994) Lifetime and 12-Month Prevalence of DSM-III-R Psychiatric Disorders in the United States: Results from the National Comorbidity Survey. Arch Gen Psychiatry. 1994;51: :8-19.

Milot, Alissa S (2016) The Unique Interpersonal Demands for Women with ASD: Implications for Gender-Specific Supports for Adults. Autism Spectrum News 8:4.

Taylor, JL, Henninger, NA, Mailick, MR. (2015) Longitudinal patterns of employment and postsecondary education for adults with autism and average-range IQ. Autism 19: 785-793.

Van Wijngaarden-Cremers PJ, van Eeten E, Groen WB, et al. (2014) Gender and age differences in the core triad of impairments in autism spectrum disorders: a systematic review and meta-analysis. J Autism Dev Disord 44: 627-635.

Wilson CE, Murphy CM, McAlonan G, et al. (2016) Does sex influence the diagnostic evaluation of autism spectrum disorder in adults? Autism.

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Posted in Fall 2016 Issue | No Comments »

“The Lighter Side of the Spectrum – a Mom’s View” This Boy Jack

It’s August now. The days are still long and hot and humid, but there is a tinge of autumn in the air, especially at night. Most of you are starting to think about school again. You are reading over your supply list for seventh grade and wondering if your new teacher is nice or strict.

I wonder if you remember a boy named Jack from last year. He’s tall, and he wears glasses, and sometimes he jumps around a lot. He bought his lunch from the cafeteria every single day. For the annual science project he made an experiment with cotton candy to see if it would dissolve in water. A lot of times he got mad.

He got mad about the computer, about recess, and about the complicated tangle of friendships his spectrum brain could not unravel. He screamed swear words. He threw books. He banged his head on the wall and flapped his hands around his ears. Sometimes when he got mad, the teachers had to take all of you out of the classroom so he could try to calm down by himself.

Maybe this made you nervous. Maybe you exchanged looks with each other as you filed out into the hallway. Maybe you worried about him, or you were scared of him. Maybe you knew about his autism so you felt a little sad for him.

He hates himself for that. He hates himself for the room-clearing and the book-throwing and head-banging.

Have you ever hated yourself? Have you ever been so embarrassed and ashamed of the way you acted that you felt dark and empty and all alone inside?

This boy Jack, he feels that way a lot of the time.

In a few short weeks, you will go to the middle school that was built in 2007 and is attached to the high school and meet your new teachers. You will eat your lunch in the cafeteria and check books out of the library, and in this middle school, you will start to dream of your future, grown-up selves.

Maybe you will dream of becoming astronauts, or ballerinas, or teachers or gardeners or lawyers. Or of moving to Florida, or flying a plane, or backpacking across Europe. This boy Jack, well, he just dreams of being normal.

He dreams about being like each one of you, with your easy smiles and your calm, still bodies. He dreams of shedding his autism the way a caterpillar sheds his cocoon and turns into a bright, incandescent butterfly.

Jack is not coming back to public school this year.

Over the summer, his mom and his dad spent a lot of time researching academic options and meeting with people for an out-of district-referral. This was very hard for themThey never imagined their son would not make it in public school.

Their son is not making it in public school.

And the mom, well, she has tried to avoid this solution for as long as she could. See, she has five kids and she always pictured them like five little ducklings walking a similar path. Now she has to pluck one of her ducklings out of line, and send him off to a school ten miles in the other direction all by himself.

This school, it only has thirty-five kids. It is mostly boys with just a couple of girls. There is no cafeteria. There is no big bus.

On the first day of his school, this boy Jack will climb into a minivan that has a sign attached to the top of it. The sign says School Bus, but it isn’t really a bus.

This is what hurts the mom’s heart the most. It hurts her the most because she remembers when Jack started first grade and he insisted on riding the big bus like his older brother, Joey. He didn’t talk as well then but still, they knew what he meant. “Big bus like Joey. Ride big bus.”

But it’s time. This mom, she knows this.

She knows that if she continues to clutch her dreams too tightly in her fingers, they will disintegrate like the luminous wings on her fragile butterfly. They will lose their color, and their softness, and turn to dust. She has to let her dreams breathe, and move, and change.

It is time to accept what is before her and look at what’s ahead of her and be willing to consider a different boy and a different school and a different life.

See, when it comes to autism, there are no do-overs. There are no second chances. This mom has just one opportunity to be his mom and she has to make the very best right decision for him, even when the best right decision is so terribly hard that it makes her heart fold over on top of itself.

“I will go. Like Joey.”

She told him last Wednesday about his new school. They were driving home after the last day of his summer program, and he was talking on and on about his teacher for seventh grade and whether or not they should look for blue pencils. She pulled the car into the garage and turned off the engine and turned to face him in the seat next to her.

“Jack, buddy. Listen to me. You aren’t going back to public school.”

They didn’t plan to tell him this way, the mom and the dad. They planned to sit him down at the long kitchen table and have a discussion so they could explain the reasons and outline the plan. But if she had to hear him talk about seventh grade one more minute she was afraid she might go crazy. It felt too much like a big, ugly, snakey lie.

Sitting in the cool, dark garage, it was as if everything around them—the dad’s old work boots and the broom on the hook and the soccer ball in the corner—took a collective breath together and waited.

This boy Jack, well, he simply dissolved. There is no other way to describe it.

She held him across the console of their red minivan and even though she could feel the hate and rage and shame radiate off of his body like the sun, he let her hold him. He doesn’t always let her hold him.

“Just let me be normal please let me go I will be good please please please I have to go I need a new start I will do it right I will be good like Joey I have to go like Joey.”

While he sobbed and screamed, she thought about all the things she wanted him to know.

She wanted him to know this is not because he was bad or because he did something wrong. She knows how hard everyone around him worked–his teachers and his aide and his case manager. She knows how hard he worked.

But at some point, autism made his corners sharper and more rigid, and it became harder and harder to wedge him into the round, smooth games at recess.

She wanted to tell him how many nights she and his dad spent talking in the darkness—each playing something called devil’s advocate and tossing around options and trying to figure out a way to keep their precious son marching in his duckling line.

“What if we paid for….?”

“The school said we can’t do that.”

“How about if we try one more year?”

“I don’t think I can take one more year, and neither can he.”

“He’s going to be devastated.”

“I know.”

She held him while he cried big, wet tears. She stroked his soft hair and for a second he laid his head in her lap and she rested her head on top of his, and then all at once he lifted up and slammed into her chin and she bit her tongue very hard. Tears sprang into her eyes.

“Why! For you. Are CRYING.”

Oh, my Jack-a-boo, she thought in her head.

She wanted to tell him she was crying for all the things he wouldn’t have; a tuxedo for the prom and hot lunch in a noisy cafeteria and the chance to stand at the bus stop with his three brothers and one sister on the first day of school.

But she knows it is time—it is time to make his world small and cozy and warm. It’s time for him to relax in his cocoon, and just be the most perfect-est caterpillar ever. In his new school, he can blossom into a butterfly whenever he’s ready.

It’s August now. In just a few short weeks, you will make the climb up the hill to the middle school that was built in 2007. As you sit in your new classrooms and listen to your new teachers, I only hope one thing.

Don’t forget him.

Please, don’t forget this boy who tried so hard and who will never give up and who wants to be just like you.

 

What Color Is Monday?” is available on Amazon.com and BarnesandNoble.com. You can also follow Carrie on her weekly blog: www.CarrieCariello.com and Facebook.com/WhatColorIsMonday.

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Posted in Fall 2016 Issue | No Comments »

A Support Group for Parents of Tween Girls with Autism Spectrum Disorder

The gender imbalance among those diagnosed with autism spectrum disorder (ASD) is 4 to 1 boys to girls. When considering those diagnosed with ASD without intellectual disability, the imbalance is even greater – 7:1 (Skuse & Mandy 2015). One consequence of this gender imbalance is that parents of girls with ASD often find themselves without a supportive community. Girls with ASD not only present differently from boys with the diagnosis, they also face unique challenges as females (Faherty 2002). Parents of girls find that, within the ASD parent community, they are in a distinct minority. Turning toward the parents of neurotypical girls for support may not create a great fit, as parents find that their daughters may need a different kind of help to support their daughters as they face the challenges of growing into young womanhood.

A recognition of this led to the creation of a support group for parents of tween (ages 9-13) girls with ASD. The group has run successfully for two years and has now been expanded to include parents of teen girls as well. Prior to the group launch, we attempted to gain a sense of whether there was a need for this kind of support for parents of girls. We held an informal discussion night in which staff members who had daughters with ASD lead a discussion specifically for parents of girls ages 18 and below. That event was followed by a book talk by Eileen Riley-Hall, author of Parenting Girls on the Autism Spectrum. The turnout and enthusiasm for these events led us to believe that parents of girls needed more services geared specifically for them.

In spite of the enthusiasm the parents had indicated, the group was slow to start. In the fall of 2014 we launched three parent support groups, including the group for parents of girls. While the other two groups which were open to parents with male or female children filled quickly, the parents of girls group had to be delayed by a month to give it time to meet the minimum number of participants to run. We generally advertise our programs by email. In this case, I made personal calls to those who attended the previous events and were eligible for the group based on their daughter’s age. I also made the decision to run the group on the weekend, rather than an evening during the week, so that parents from outside the surrounding area could attend. While the majority of attendees were local, we did have parents who traveled over an hour to attend the group. Even within a major metropolitan area – we are located just outside of Boston – it took some flexibility to initially fill the group.

I began the group thinking that it would be psychoeducational and planned for each meeting, with topics and resources ahead of time. I imagined that parents of females who were on the cusp of adolescence would want information on puberty, hygiene, and social skills. While it was the case that most group member were struggling with some of these issues at home, it was clear that they did not need a curriculum. Even though their daughters were close in age, the variation in physical development was quite significant. For example, while there were parents in the group who were very worried about how to address their daughter’s first menstrual cycle, there were many parents for whom this milestone was in the past. The variety of experiences meant that these parents could advise one another based on their own experiences.

As the leader, I felt it was important to be flexible, so I discarded my curriculum and addressed the issues that surfaced naturally. The parents’ concerns were very much in keeping with the growing literature about females diagnosed with autism without intellectual disability; mental health issues came to forefront rather quickly (Mandavilli 2015). Most parents expressed concern about their daughter’s emotional regulation and anxiety. Related issues raised by the group included school refusal, self-injury in the form of cutting, and depression. As with any support group, members were able to normalize experiences they perceived as shameful by sharing them with others and learning that they were not the only families with these issues.

The sense of parental isolation was quite striking. While some parents had daughters who were diagnosed young, many had been diagnosed quite recently. Because we do not require that participants in any of our programs or services have a formal diagnosis, there were participants who were in the process of getting the diagnosis for their daughters. This is not terribly surprising, as the literature tells us that girls with these kinds of profiles are diagnosed on average two years later than boys (Mandavilli 2015). The period before diagnosis can be difficult for parents, who are struggling with children they don’t completely understand. Parents report receiving advice from friends and family members that is unhelpful at best and at times insulting. In fact, an early group meeting focused primarily on the issue of feeling judged by members of the extended family, friends and neighbors.

Group members also developed relationships with one another and between their daughters outside of the support group setting. We encourage this, as one of the goals in our mission is to facilitate the creation of community for those with ASD and their families. Additionally, many of the parents were interested in expanding their daughters’ social circles. Their daughters had experienced a great deal of social rejection and the parents were very concerned about their isolation and loneliness. Nearly every parent expressed pain at the social rejection each girl had experienced.

This fall the group will enter its third year. The continuing interest in this program demonstrates the need parents of girls have for supportive communities. Hopefully, the increased understanding of the different presentations of ASDs will lead to earlier diagnosis of girls, so they and their families can access the support they need. Parent support groups can be an effective part of that support.

 

To learn more about AANE programs and services as well as find information on ASD in girls and women, please visit our website, www.aane.org.

References

Skuse, D. & Mandy, W. (2015) The female autism conundrum. Retrieved from https://spectrumnews.org/features/webinars/webinar-the-female-autism-conundrum/

Faherty, C. (2002) Asperger’s syndrome in women: A different set of challenges? Retrieved from http://autismdigest.com/aspergers-syndrome-in-women/

Mandavilli, A. (2015) The lost girls. Retrieved from https://spectrumnews.org/features/deep-dive/the-lost-girls/

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Posted in Fall 2016 Issue | No Comments »

“Give a Spit” to Help Scientists Uncover the “Female Protective Effect” for Autism

For years, we’ve known that four times as many boys as girls are diagnosed with autism. More recently, genetic research has surprisingly shown that the various genes that cause autism are equally distributed in boys and girls. So what explains this difference – why do some girls who have the exact same autism genes as their brothers never develop autism? What protects them?

To find the answers to these critical questions, the Autism Science Foundation – a not-for-profit organization dedicated to supporting and funding autism research – has launched the Autism Sisters Project, a search for what is referred to as autism’s “female protective effect.”

The Autism Sisters Project will give unaffected sisters of individuals with autism the chance to play an active part in accelerating research into the “female protective effect.” The goal is to build a large genetic database that researchers can use to explore this phenomenon and discover how the protective factor can be harnessed to help people with autism of both genders. Once scientists know what causes that protection or resilience, they may be able to develop new drugs or therapies.

Here’s how it works: the Autism Sisters Project is seeking families that have a child with autism and an unaffected sibling. Taking part is easy and painless. All the siblings need to do is visit the Seaver Center at Mount Sinai Hospital in Manhattan, play some simple thinking and language computer games, take part in a basic assessment and then spit into a test tube. There’s no blood test – all the DNA is collected through that saliva sample. The researchers will take care of the rest!

“I don’t want to change my brother, but if there was something that I could do to help him, I know I definitely would,” said Evee Lopes, who participated in the study and whose brother Tommy has autism. “By participating in the Autism Sisters Project, I’m getting one step closer.”

The important genetic information that will be gathered from these new genetic samples will be added to information from earlier studies that included a non-diagnosed sibling. By pooling all this information, scientists will be able to study the “female protective effect” much more quickly and efficiently. The more information researchers have to work with, the better.

The project is being overseen by a scientific advisory panel led by Joseph D. Buxbaum, PhD, Director of the Seaver Autism Center at the Icahn School of Medicine at Mount Sinai, along with experts in genetics, statistical genetics, epidemiology, and ASD clinicians.

“We’re learning more and more about how autism affects males and females differently, as well as the underlying factors behind these differences,” said Alycia Halladay, PhD, chief science officer of the Autism Science Foundation. “This is an exciting and promising opportunity to leverage that understanding for deeper research into potential factors that could have a significant impact on the lives of many people with autism. Right now, the limiting factor is a lack of genetic data. The Autism Sisters Project will help eliminate that barrier and rapidly move the science forward.”

“The female protective effect is a very important area of investigation in the autism research community and the Autism Sisters Project is going to jumpstart the process of developing a necessary cohort of unaffected female siblings,” said Dr. Buxbaum. “I, and all my colleagues at Mount Sinai, are thrilled to be partnering with the Autism Science Foundation on this initiative. This is an enormously exciting opportunity for sisters of individuals with autism to take a proactive role in advancing important research.”

The Hilibrand Foundation is partnering with the Autism Science Foundation on the Autism Sisters Project, providing major financial support for this research initiative. The Hilibrand Foundation is a private family foundation that was established in 1991 by Debbie and Larry Hilibrand. A key mission of the Foundation is to support scientific funding of autism research.

“The Hilibrand Foundation is proud to be a collaborative partner of the Autism Science Foundation,” said Debbie Hilibrand, co-Founder of the Hilibrand Foundation. “The Autism Sisters Project is a very promising research initiative that should provide significant insight into the causes and potential treatments for autism by conducting a thorough investigation into the reasons behind the gender discrepancy of diagnoses.”

The Autism Sisters Project is initially seeking participants in New Jersey, New York and Connecticut, with additional sites to be added in the US and data included from studies from outside of the U.S.

 

To participate in the Autism Sisters Project, interested participants should contact the Seaver Autism Center by phone at 212-241-0961 or by email at theseavercenter@mssm.edu.

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Posted in Fall 2016 Issue | No Comments »

The Challenges of Adolescence for Females with ASDs

Approaching adolescence can be a challenging time for many individuals. The challenges are certainly different for each gender and females with Autism Spectrum Disorder (ASD) may experience these challenges in a unique way compared to their neurotypical peers. The uncertainty of the physical changes that are happening to their bodies and how to cope with those changes can cause stress and anxiety for many teens. While families are often well prepared for helping their daughters’ transition to various developmental stages, from kindergarten to elementary school, many females find themselves unprepared when transitioning to adolescence and approaching puberty. Parents may find themselves “caught off guard” when their daughter experiences her first menstrual cycle or when they find out their daughter is being teased in the locker room because she is not yet wearing a bra (Nichols, Moravcik and Tetenbaum 2009). Adolescence and transitioning to puberty can be a stressful time for many parents and especially for parents of girls with ASD (Zamora et al 2014). Professionals who work with families and individual females can help them become better prepared for the transition to puberty and guide their daughters to cope with some of the challenges that they may encounter during this time.

Understanding your daughter’s individual abilities may help you to set up a plan that will ease the transition to puberty. Consider your daughter’s overall intellectual ability, how she copes with change, her abilities in communicating her feelings, her organizational skills, and any sensory challenges. The physical changes that occur in females during puberty may be a time of mixed emotions for many teens. Individuals with ASD may experience sensitivities to sound, touch, taste, light intensities, and some fluctuate between hypo-sensitive and hyper-sensitive (Mandy et al 2011). For example, the experience of having to wear a bra for the first time may be met with stress and/or sensory discomfort for some females with ASD. To help your daughter plan for this transition take into consideration if she tends to have sensory challenges. If you know she has a particular preference begin to discuss the different choices that are available. Plan in advance to try out the several different types so that she can chose a style that she is most comfortable with wearing. Chose an environment in which she is most comfortable and will allow her to experience success when practicing wearing the item. Keep in mind information and skills may not be learned the first time, therefore multiple repetitions may be needed to ensure skill acquisition (Nichols et al 2009). Consider your environment in advance: do you need to practice in the comfort of your home or in a fitting room at the store? Prepare by using visual supports such as picture cues or written words to help teach the steps. Think about the teaching techniques that are most effective with your daughter and use those strategies. Some strategies to consider may include behavior chaining techniques (e.g., backward chaining, forward chaining) which can be used to build upon and improve an individual’s independent living skills. (Cooper et al 2007). Break down steps into small components and practice the steps by modeling the appropriate actions, role play, review and provide behavior specific feedback. Take the time to teach this new skill, practice often and provide positive reinforcement (Miles et al 2009). These tasks may be unpleasant to your daughter and it is important to pair this experience with a positive interaction.

Consultation with a psychologist or a board-certified behavior analyst (BCBA) can also provide guidance on the teaching methods or types of materials that would be appropriate to use with your daughter. Preparing your daughter for the changes that come with adolescence, especially during her first menstrual cycle, can ease some fear and anxiety. Talking with her medical physician will help you understand the developmental signs that may be associated with this upcoming change. Her medical doctor may be able to guide you to websites that are approved by the American Academy of Family Physicians (AAFP). Parents may want to review various teaching techniques and decide on a method that would work successfully with their daughter. Planning ahead of time and being proactive as much as possible will help her know what to expect. Teach your daughter some of the steps of personal hygiene by using detailed visual supports, using a task analysis and breaking tasks into smaller steps, and use positive reinforcement when your daughter is successful. The use of a wall calendar can also provide a monthly reminder and serve as a guide to review the steps of how to prepare. Remember the goal is for your daughter to be independent and apply strategies to reach her goals. If her goal is deal with her menstrual cycle each month independently, initially parents may help their daughter set up an action plan on how to achieve that goal. Include methods on how to self-evaluate, make adjustments, monitor progress and review the plan to see if it was a success (Agran et al 2000). Remember to keep instructions simple, use visual cues, model instruction, practice, repeat, and reinforce (Nichols 2009).

While adolescence can be a stressful time for all individuals and their families, females with ASD are faced with a unique set of challenges. Females with ASD are likely to require more direction and guidance than their neurotypical peers in order to navigate puberty and sexual development. By using evidenced based strategies, as one would to help their child acquire any new skill set, and obtaining guidance from a professional with experience in working with females with ASD, parents can more effectively support their daughters in successfully navigating through adolescence

Elena Zaklis MA, BCBA and Rory Panter PsyD, are from Behavior Therapy Associates in Somerset, New Jersey and can be reached at ezaklis@behaviortherapyassociates.com or rpanter@behaviortherapyassociates.com and at www.BehaviorTherapyAssociates.com.

References

Agran, M., Wehmeyer, M.L. (2000). Promoting Transition Goals and Self-Determination Through Student Self-Directed Learning: The Self-Determined Learning Model of Instruction. Education and Training in Mental Retardation and Developmental Disabilities, 35(4), 351-364

Allen, K. D. & Warzak, W. J. (2000). The Problem of Parental Nonadherence in Clinical

Behavior Analysis: Effective treatment is not enough. Journal of Applied Behavior Analysis, 33, 373-391.

Atwood, T., (2007). The complete guide to Asperger’s syndrome. London: Jessica Kingsley Publishers.

Cooper, J.O., Heron, T.E., Heward, W.L., (2007). Applied Behavior Analysis-2nd Edition. Upper Saddle River, NJ: Pearson Prentice Hall.

Kirkovski, M., Enticott, P. G., & Fitzgerald, P. B. (2013). A Review of the Role of Female Gender in Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 43(11), 2584–2603.

Kreiser, N.L., White, S.W., (2014). ASD in Females: Are We Overstating the Gender Difference in Diagnosis? Clinical Child Family Psychology Review, 17, 67-84.

Mandy, W., Chilvers, R., Chowdhury, U., Salter, G., Seigal, A., Skuse, D. (2011). Sex Differences in Autism Spectrum Disorder: Evidence from a Large Sample of Children and Adolescents. Journal Of Autism and Developmental Disorders, 42(7), 1304–1313

Miles, N. I. & Wilder, D. A. (2009). The Effects of Behavioral Skills Training on Caregiver Implementation of Guided Compliance. Journal of Applied Behavior Analysis, 42, 405-410.

Nichols, S., Moravcik, G. M., Tetenbaum, S.P., (2009). Girls Growing Up On The Autism Spectrum. London: Jessica Kingsley Publishers.

Simone, R. (2010). Aspergirls-Empowering Females with Asperger’s Syndrome. London: Jessica Kingsley Publishers.

Stewart, K. K., Carr, J. E. & LeBlanc, L. A. Evaluation of Family – Implemented Behavioral Skills Training for Teaching Social Skills to a Child with Asperger’s Disorder. (2007). Sage Publications, 6, 252-262.

Willey, L. H. (2012). Safety skills for Asperger women: how to save a perfectly good female life. London: Jessica Kingsley Publishers.

Zamora, I., Harley, E.K., Green, S. A., Smith, K., & Kipke, M. D. (2014).How Sex of Children with Autism Spectrum Disorders and Access to Treatment Services Relates to Parental Stress Autism Research and Treatment, Volume 2014, (2014) http://dx.doi.org/10.1155/2014/721418

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How Gender Differences Influence the Needs of Girls on the Autism Spectrum

I have often argued – and will never tire of arguing – that people on the autism spectrum are human first, rather than primarily autistic. Being human means many things, but we shouldn’t forget one of its most fundamental aspects: Relating to the surrounding world through our bodies, wherein lie the senses and perception.

To have a body is, in turn, to have a gender. Recent years have seen some intriguing research on differences between boys and girls in terms of how they learn, think, perceive the world, etc.

Before proceeding, I need to be crystal clear about something. The “differences” of which I speak are not value differences that justify gender stereotypes. They do not make either gender superior or inferior to the other. Rather, the differences between the sexes complement one another to make a complete and rich human tapestry.

If we do not take these differences into account, this can paradoxically lead to stereotyping and to the shortchanging of boys, girls, or both.

As an example, consider the fact that girls tend to have sharper hearing than boys (Sax, 2005, p. 17). A teacher who speaks in an above-average tone of voice that no boy ever finds troubling may disturb his female students, thus interfering with their learning.

Let’s say the girls voice their concerns in this matter. Imagine the danger inherent in the teacher’s unawareness of this important perceptual difference in girls. With such awareness comes an understanding that they are responding to a very real, and understandably upsetting, phenomenon. But without it, the teacher might be tempted toward a common stereotype – namely, that girls make much ado over nothing and are emotional to the point of irrationality.

 

The Importance of Gender Considerations
in Autism Spectrum Disorders

 

All this said, how is the gender question relevant when it comes to dealing with autism spectrum disorders (ASDs)? Consider Mandavilli’s (2015) insights on this matter:

“Even after a girl [on the autism spectrum] gets the right diagnosis, she may be offered (. . .) essentially the same services offered to a boy in the same situation. Scientists and service providers rarely acknowledge the additional challenges being female may bring, whether physical, psychological or societal. (. . .) Advocates and scientists in other disciplines have run up against and resolved many of these same problems, but in autism, the fact that boys and girls are different is sometimes treated as if it’s a startling new discovery (para. 10, bold added).”

To be sure, the unique needs of ASD females are many. But given limited space, I want to focus on a need that stands out most powerfully: Social life.

Face vs. Motion:
Perception and Social Skills

In order to lay a foundation from which to consider the social issue, I want to focus on one major difference between neurotypical boys and girls cited by Sax (2005):

“Researchers at Cambridge University wondered whether female superiority in understanding facial expressions was innate or whether it developed as a result of social factors[.] (. . .) [They] decided to study newborn babies on the day they were born. (. . .) The results of this experiment suggest that girls are born prewired to be interested in faces while boys are prewired to be more interested in moving objects. The reason for that difference has to do with sex differences in the anatomy of the eye (p. 18-19, italics included).”

This may explain why social interaction is, on average, more important to girls than to boys. All human beings are social creatures (however widely sociability may vary from person to person); but the friendships of boys and men tend to center around shared activity (hearkening back to the fascination with motion), whereas girls and women tend toward more person-centered relationships (facial focus).

From what I have been able to gather, girls on the autism spectrum are no different from their neurotypical counterparts in this respect. Center for Autism and the Developing Brain at Weill Cornell Medical College Director Catherine Lord observes that “[o]n average, girls [on the spectrum] are more chatty, less disruptive and less likely to be entranced by trains or moving vehicles than boys are” (as cited in Mandavilli, 2015, Girl power section, para. 7).

As ASD girls progress through developmental stages in which socialization becomes increasingly important, they are likely to require more specialized attention and services. Mandavilli (2015) puts it this way:

“In early childhood, boys and girls with autism are about the same. If anything, girls appear to be more social — whether because they actually are or are just perceived to be. As they edge closer to adolescence, however, girls with autism lose this early social advantage, becoming less and less likely to have friends, and more likely to be isolated (Social networks section, para. 2).”

No one on the autism spectrum, whether male or female, wants to be alone. People with ASDs are as desirous of human connection as anyone else, but lack the natural capacity to navigate the complexities of the social world.

But whereas boys are more apt to accept this as a given and forgo the effort, girls on the spectrum appear more likely to behave as “social butterflies” in spite of their deficits, which can open them up to embarrassment and/or abuse.

The Other Girls

It is also helpful to consider the neurotypical girls surrounding girls on the spectrum. They, too, possess the female “facial-focus,” which can mean one of two things.

As Mandavilli (2015) suggests, neurotypical girls can come to see themselves as “protectors” of their ASD peers (Growing up section, para. 6). But in adolescence, the “facial-focus” can also translate into a fixation on self-image, which in turn becomes an obsession with cliques and the “mean girl” attitude. Here you have a potentially volatile arena in which the social hurdles ASD girls face could get them into trouble.

A Possible Aid

Without trying to discourage friendships with female peers, I would like to suggest that appropriate friendships with boys of the same age group may be helpful to girls on the spectrum. According to Mandavilli (2015):

“Imaging studies have reported that the social brain is underactive in people with autism, but [Yale professor Kevin] Pelphrey’s lab has found that if typical girls have the most active social brains and boys with autism the least active, typical boys would tie with girls who have autism somewhere in the middle. “That kind of blew us away,” he says. (Different worlds section, para. 6, italics added).”

To be sure, gravitating towards too large a number of male friends carries its own risks. In adolescence, the social vulnerability of ASD girls could make them prey to sexual abuse. As in all things, prudence is of the essence.

But perhaps if parents and teachers are able to come together and identify trustworthy boys – and girls, for that matter – with whom ASD girls attend school, they could get the proverbial ball rolling on positive change.

Conclusion: Personal Reflections as a Male on the Spectrum

Autism is a broad condition that involves social and conceptual difficulties resulting from uneven sensory experience, which in turn involves a combination of hypertrophied and atrophied senses. Which senses are hyper-alert and which are under-alert varies from person to person.

But as much as this and other variations within the spectrum may be recognized, autism has traditionally been viewed as a male disorder.

Looking back on my own experience with Asperger Syndrome, I must acknowledge the irony in the fact that my condition has, in a certain sense, led to greater sympathy with the female sex than with the male sex (especially during my school days).

I think this may stem from the fact that one of my hypertrophied senses is the sense of hearing – which, as mentioned, tends to be stronger in females than in males. While I cannot prove this in anything approaching a scientific manner, the theory makes sense in my mind. Like girls, I was always very sensitive and had strong emotions – a fact that may have roots in the sensitivity of the ears.

So as much as people may associate autism with males, we may recognize that the overall “picture” is more complex than we might suppose.

 

Daniel Crofts is a 31-year-old man with Asperger Syndrome. He has an MA in English/Literature from the State University of New York College at Brockport and experience in the fields of freelance journalism, substance abuse prevention, online higher education, and service to people with developmental disabilities. He runs a blog called Forming Horizons (forminghorizons.com), which is dedicated to the mission of dialogue and information among and for the various parties impacted by autism spectrum disorders.

References

Mandavilli, A. (2015, October 19). The lost girls. Spectrum. Retrieved from https://spectrumnews.org/features/deep-dive/the-lost-girls/

Sax, L., M.D., Ph.D. (2005). Why Gender Matters: What Parents and Teachers Need to Know About the Emerging Science of Sex Differences. NY: Doubleday.

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“Labels Do Not Describe Me” Gender Identity Among Women on the Autism Spectrum

A large number of women with Autism Spectrum Disorder (ASD) are currently undiagnosed or misdiagnosed. In the United States, for every four males diagnosed with ASD, only one female is diagnosed (Centers for Disease Control and Prevention, 2012). While there is likely to be a true sex difference in the prevalence of ASD, females are also more likely to be underdiagnosed with ASD. This may reflect, in part, to a lack of awareness among health professionals and the general public about what ASD in women looks like. In addition to women being underdiagnosed or misdiagnosed with ASD, little empirical research currently exists on how they experience their sexualities. This is an unfortunate oversight, seeing that sexuality is common to all human lives. However, some of the existing literature on ASD and sexuality suggests that individuals with ASD may be more likely than individuals without ASD to identify as a “tomboy” or have a non-traditional gender identity (Ingudomnukul, Baron-Cohen, Wheelwright, & Knickmeyer, 2007), and to identify as a sexual minority or experience same-gender sexual attraction (Byers, Nichols, & Voyer, 2013; Gilmour, Schalomon, & Smith, 2012). In this article, our goal is to shed light specifically on the gender identities of women with ASD, drawing from our research and clinical experiences with autistic women in the community.

The research findings reported in this article are drawn from the [Autistic] Women’s Sexuality Study (Bush, 2016), Dr. Bush’s survey-based dissertation study of multiple aspects of sexuality and well-being among young women (18-30 years old) with and without ASD. Gender non-conforming individuals, including transfeminine women, were invited to participate too. In total, 248 individuals with ASD and 179 individuals without ASD participated, for a total sample size of 427. The clinical case vignette included here is drawn from Ms. Mendes’ work with hundreds of women (14-74 years old) with ASD, for diagnosis, individual and couples’ counseling, and in support groups.

What is Gender Identity?

Gender identity is one’s internal, deeply held sense of one’s gender. In many societies, people are primed to have a gender identity either as a woman (if they are designated female at birth) or as male (if they are designated male at birth). When one’s gender identity aligns with the sex they were designated at birth, they are considered cisgender. However, for some people, their gender identity may not align with the sex they were designated at birth. Further, some people notice changes in their gender over time. Regardless of which sex they were designated at birth, people may identify as masculine, feminine, both, neither, or as other genders.

In the [Autistic] Women’s Sexuality Study, participants were asked to describe their gender identity in an open­-ended format. Among the 248 participants with ASD, 50% reported having a non-binary gender identity, as compared to only 21% of participants without ASD. Aside from cisgender, which was reported by 50% of the ASD sample, the following genders were endorsed by participants with ASD: agender (having no gender; not identifying as masculine, feminine, or another gender; 17%); gender non-conforming/non-binary/genderqueer (not identifying exclusively as masculine or feminine, and not ascribing to the traditional gender roles and societal expectations of the gender associated with one’s sex assigned at birth; 15%); demigirl (identifying partially, but not completely as a woman, girl, or as feminine; 7%); genderfluid (moving across genders or having a fluctuating gender identity; 4%); transgender (having a gender identity that does not match the sex one was assigned at birth; 3%); bigender (having two gender identities, which may be masculine, feminine, and/or other genders; 1%); and pangender (not identifying exclusively as masculine and/or feminine and instead experiencing all genders, possibly genders that they cannot describe, or that society does not recognize; 1%)1.

What Do People with ASD Say About Gender Identity?

In the study, participants were asked: “If you identify as being on the autism spectrum, how if at all has being on the spectrum influenced your sexuality and/or gender identity?” Some participants discussed their gender identity when responding to this question:

 

“I’ve always kind of been the ‘weird kid’ and have never really conformed to gender, so I don’t think I grew up with anyone that I cared about really expecting me to be straight or gender­conforming. If you’re different from the start, it doesn’t really surprise anyone all that much when you keep being different…” (Genderfluid, 27, Asian American)

 

“…I just accepted that I was vastly different than a lot of my peers and moved on with life. I have noticed that I am a lot more likely to completely discount gender identity as important than most of my peers, which is part of the reason I identify as genderqueer and pansexual (because as far as I’m concerned everyone else is sort of genderqueer too;­­ the gender doesn’t matter to me).” (Genderqueer, 29, European American)

 

These insights are consistent with the experiences of many gender non-conforming individuals Ms. Mendes has encountered in her counseling work. Below is a fictitious, composite narrative, intended to further illustrate the experiences of gender identity of some women with ASD. This is not based on any specific individual or client.

Meet Anik

Meet Anik, who is White, European American, and 22 years old. Anik entered counseling at their parents’ recommendation due to their questions about ASD and gender identity. Anik prefers the pronouns they, them, and theirs. They dress in business casual attire – oversized silk blouses neatly tucked into their tailored trousers, and keep their messy, curly hair in a ponytail. They have a bachelor’s degree in history, but they are currently unemployed and looking for a job. Anik was designated female at birth and was given a traditionally female name. Over the last two years, however, they have not identified as female or as a woman – they are questioning whether they have a gender identity at all (“agender”). They have assumed a new name, Anik.

Anik has a somewhat complicated psychiatric history. Anik first received a diagnosis of anxiety disorder and ADHD at 12 years old, when they first began to worry about their parents getting a divorce, despite the fact that their parents remained married. At 15 years old, Anik was diagnosed with depression and anorexia, and was briefly hospitalized. Recently, Anik was reading online and came across a blog about women with autism. Upon learning more about ASD and its symptoms and features, they began to wonder whether they might have ASD. Their parents thought that it would be useful for Anik to see a specialist to find out more about ASD.

In counseling, Anik was found to meet diagnostic criteria for ASD. Being formally diagnosed with ASD was a relief to both Anik and their parents. Finally, Anik was able to understand why they struggled with social anxiety, had emotional meltdowns, was very sensitive to certain clothing textures, and had difficulty initiating conversations and picking up on others’ body language and other social cues. After several sessions focused on increasing Anik’s knowledge of ASD and awareness of ASD traits and experiences, Anik felt comfortable discussing their gender identity. They shared, “I have been wondering about whether I am agender. I first learned about this concept a couple of years, when a friend posted something about it on Facebook. I feel like ‘agender’ describes who I am because I do not intrinsically feel either male or female. I really do not identify with either.”

Conclusions

Some autistic women identify as cisgender, or female: they are designated female at birth, and grow up to have a feminine gender identity that is consistent with their sex. However, this is not the case for many individuals with ASD – including about half of the participants in the [Autistic] Women’s Sexuality Study. These findings were consistent with the few other studies in which autistic adults self­-reported on their own sexuality identities and experiences (e.g., Byers et al., 2013, Gilmour et al., 2012). Autistic individuals who are designated female at birth but have a gender non-conforming identity may be relieved to know that their experience is common. It may be the case that aspects of their neurology, while currently unidentified, may account for differences in their gender identity. Self­-knowledge can be empowering to live authentically and to pursue meaningful relationships.

A theme that emerged from participants in the [Autistic] Women’s Sexuality Study was the being less tuned into social communication subtleties – a feature associated with ASD – may protect someone from being oppressed or held back by social norms around gender. For some individuals, these norms can feel very restrictive. As a result of feeling less bound by social norms, people with ASD may feel freer to explore their gender identity and to identify as neither female nor male, but as something different or somewhere in between. However, given the focus on women and young adults in the [Autistic] Women’s Sexuality Study, we do not know whether males or older adults with ASD may be more, less, or equally likely to endorse non-­binary gender identities as the participants in the [Autistic] Women’s Sexuality Study.

Raising the awareness of families, friends, and professionals about the diverse continuum present in gender identities of people on the autism spectrum is important so that they can demonstrate sensitivity, understanding, and acceptance. For health professionals, it is important not assume that anyone is cisgender. Instead, people in these roles are encouraged to ask their clients/patients about which pronouns they prefer (e.g., “she,” “he,” “they”) and use these respectfully. Also, asking questions of this nature also demonstrates comfort and willingness to discuss gender and sexuality. Further, it is important not to make assumptions about other people’s identities based on the way they look or seem. For some people, their outward appearance is very much linked with how they identify on the inside, but for others, their outward appearance may be different from their inner identity. Further, some individuals have fluid gender identities that fluctuate over time. These changes may happen very quickly or very slowly, and people may choose to use different terminology to reflect these changes (e.g., a person who previously identified as heterosexual may now identify as asexual). Overall, people involved in the lives of individuals with ASD are encouraged to educate themselves on how this population – particularly young women – may experience gender differently.

Eva Mendes, LMHC, is an Asperger/autism specialist, psychotherapist, and couples’ counselor in private practice in Arlington, MA. She has met and worked with hundreds of individuals, couples, and families with Asperger’s/Autism with diverse profiles, circumstances, and backgrounds. She also facilitates workshops and trainings at various universities, mental health, and medical centers. Her book Marriage and Lasting Relationships with Asperger’s Syndrome was published last year. She can be reached at her website http://www.evmendes.com or email at evamendes2911@gmail.com.

Hillary Hurst Bush, PhD, recently received her doctorate in Clinical Psychology at the University of Massachusetts Boston. She is now a Clinical Fellow at Massachusetts General Hospital. She can be contacted at umbwomensstudy@gmail.com.

Footnotes

  1. Please note that these definitions are adapted from those provided by Nonbinary.org, the GLAAD Media Reference Guide, and recent scientific research on gender identity.

References

Bush, Hillary Hurst, “Self-Reported Sexuality among Women with and without Autism Spectrum Disorder (ASD)” (2016). Graduate Doctoral Dissertations. Paper 243. http://scholarworks.umb.edu/doctoral_dissertations/243

Byers, E. S., Nichols, S., & Voyer, S. D. (2013). Challenging stereotypes: Sexual functioning of single adults with high functioning autism spectrum disorder. Journal of Autism and Developmental Disorders. DOI: 10.1007/s10803­013­1813­z

Centers for Disease Control and Prevention. (2012). Prevalence of autism spectrum disorders – Autism and developmental disabilities monitoring network, 14 sites, United States, 2008. Surveillance Summaries, 61(3), 1­19.

Gilmour, L., Schalomon, P. M., & Smith, V. (2012). Sexuality in a community-based sample of adults with autism spectrum disorder. Research in Autism Spectrum Disorders, 6, 313-­318.

GLAAD Media Reference Guide Transgender Issues. (2011, September 9). Retrieved from http://www.glaad.org/reference/transgender

Ingudomnukul, E., Baron-Cohen, S., Wheelwright, S., & Knickmeyer, R. (2007). Elevated rates of testosterone-related disorders in women with autism spectrum conditions. Hormones and Behavior, 51, 597-604.

Nonbinary.org. (n.d.). Retrieved from http://nonbinary.org/wiki/Main_Page

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The Unique Needs of Women and Girls with Autism

My own experience perhaps gives an insight into the repeatedly similar tales I hear from other autistic women and parents of girls. I came to the field of autism via employment in education and then as Training Manager of a specialist Asperger mentoring project for young people. By this point, there had already been personal family realization – it became obvious through my professional learning that my partner, Keith, is autistic and other members of my family were one by one being diagnosed as well. I embarked on an extensive self-instigated learning mission for both professional and person insight, eventually writing a number of books on autism and studying for a Master’s degree in Autism.

I made myself an expert in the people I worked and lived with but despite this, I failed to see it in myself. The reason I missed it was because my learning hadn’t taught me about autistic people who looked like me: autistic people who had big, chaotic lives rather than small, isolated ones. Autistic people who knew they didn’t fit but tried their hardest to do so, often at great cost. Autistic people who were impulsive, dangerous and who love (self-initiated) change. I knew that I was odd and that every relationship I’d had was with someone who probably fitted the autistic mold. I knew I was highly logical and struggled to interact in non-structured social situations. I knew I had “phases,” 35 failed jobs and self-harmed. I knew all of that, but it didn’t look like the autism that I had studied. Keith was the epitome of the autism I had studied and I knew that I understood him, and he me, but we were so different. Weren’t we? The autism that I had studied had only given me a partial picture, because that was all we knew about it at the time. In the past few years, things have changed and changed fast, and this has meant that we now know that autism can look a whole load of different ways – for females, males and others. It is important to note that what is often called the “female autistic profile” doesn’t just apply to women – it can apply to anyone – it’s just that it appears to partly explain why so many females got missed along the way. The other part of the explanation can be put down to a self-fulfilling historical bias towards males receiving autism diagnoses, but we don’t have time for that here. It should be stated that the females that have largely been missed are those without accompanying intellectual disabilities – the Asperger profile – and that’s predominantly who this article will focus on.

So, who are these females and what do they look like, if they don’t all fit the nerd/loner stereotype? Well, from the extremely small and sparse gender focused autism research that has taken place along with an increasingly vocal female autistic population, especially through social media and blogging, we are starting to see some patterns and shared experiences that at first glance appear to entirely contradict the traditional triad of autistic cognitive processes, but on closer examination, actually reveal them, in my opinion, to be reasonably accurate but simply presented in a different way.

The females often love to talk from a young age and may have precocious vocabularies, which makes them appear very social and hence no tick in the autism box. What can be apparent on closer listening is that the conversation is not reciprocal, or is fairly surface level with little depth of understanding or nuance and hidden agenda. It is considered that in early years autistic girls perform better than their male counterparts but that things change once teenage years are reached. It’s not that the girls regress, it’s that their female peers shift gear into a more nuanced, non-verbal personality-based friendship league which our autistic girls struggle to keep pace with, and often don’t want to. Autistic people are known to have topics of fascination and interest and this certainly equally applies to females. However, an expectation of the trains, dinosaurs and space type object-based interests of the stereotypical profile may not always quite fit for females. In my experience, autistic females often have an interest in people, but almost from an outsider perspective. They study people as an object, an alien species, in a bid for understanding and perhaps acceptance. I have met many women who have studied psychology, anthropology, religion, genetics and many other wide and varied loose ‘people’ topics to try and see where they fit in the world in its broadest sense. Fascinations with celebrities, serial killers and historical figures feature frequently along with the devouring of self-help books and endless efforts to improve, change and belong have led to the individual themselves being their own special interest. I have met nurses, psychologists, counsellors – all professions that would not be associated with an autistic profile, but all roles than require the ‘working out’ of human and social rules. When talking to these women it is clear to see that the social skills that they feel that they require to be accepted in the world are ones that they have had to learn from whatever instruction manual they could find.

Despite, her best efforts at learning mechanically what non-autistics know intuitively, she is likely to still to struggle with reading people and interpreting hidden messages and agendas. This leads her to be direct and straightforward in her manner and communication, offering less social smiling and social padding than is expected for females. This can lead her to being judged more harshly because of her gender. A blundering male can sometimes be forgiven for awkwardness or limited understanding of others: ‘it’s just how men are’ is a term of our times. But a woman behaving in the same manner can be considered ‘cold’, ‘nasty’, ‘a bitch’, and thus the female autistic faces the additional challenge of not only contravening typical social norms, but gender norms too. Added to this is the fact that for many autistic females, their efforts to mask, hide and mimic learned social responses means that their autism can be incredibly invisible, only leaking out in times of stress or when the script/template cannot keep up with the current situation. This means that any faux pas look deliberate, out of context with the usual persona – and often it is just that, a series of personas for different settings – and the resulting negative feedback from recipients is crushing.

The difficulties in reading people can also lead to a vulnerability and naivety in some females which can be dangerous. Wanting to belong can make a person grateful for any attention from others and unable to determine whether it is genuine and safe. I know from my own experience that despite having an IQ of 150+, I am unable to tell if someone is lying or has an alternative motive, which has lead me into situations of harm. Being clever doesn’t protect you if you are socially gullible, as I am.

It’s not all doom and gloom, of course. The greatest surprise in my journey has been the discovery of my ‘tribe’, which I didn’t even know I needed. Connecting with other autistic women has enabled me to feel a sense of belonging that I didn’t know existed. Sometimes these are strangers on social media, but it doesn’t matter: we ‘get’ each other. When we share a tale of woe, stupidity or joy, there is no frown or confusion, no roll of the eyes of judgement, only solidarity: empathy. Yes, empathy: empathy for our own kind, for shared experiences and a shared world view. It’s just everyone else that we don’t understand.

We can learn lessons from those undiagnosed until later life that can be passed on to our girls now finding their way with diagnosis, support and knowledge. We need to encourage their individuality, give the tools to navigate the world without losing who they are along the way, which so many have done in the past. Autistic girls and women are glorious, unique creatures, defying social and gender norms, and if supported well, should be able to embrace their eccentric selves as a first-rate autistic person rather than feeling like a second class version of neurotypical.

For conference bookings and other enquiries, please see www.asperger-training,com or email: info@asperger-training.com. Please note that Sarah lives in the UK.

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How Autism Manifests Differently in Girls: What Families Need to Know

According to the Centers for Disease Control and Prevention (CDC), in 2010 The Autism and Developmental Disabilities Monitoring (ADDM) Network released data that showed “ASD prevalence…was 4–5 times higher among boys than girls” (http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6302a1.htm). Questions remain as to whether there is a bias towards males, how autism is seen differently by gender, and why girls are diagnosed later.

Are There Really More Boys Than Girls with Autism?

It does seem that autism affects boys more often; however there are several variables that need to be considered. Health disparities and poorer outcomes occur for both boys and girls in underserved populations. Specifically, “black and Hispanic children were less likely to have a first evaluation by age 36 months” (http://www.cdc.gov/mmwr/volumes/65/ss/ss6503a1.htm). This means that children are diagnosed later, or misdiagnosed, and miss out on early intervention from birth to age three. Early intervention results in better health outcomes. Differences in autism symptoms by gender are another determining factor. Lastly, research shows that girls in general are diagnosed with autism spectrum disorders later than boys.

Autism Symptomology in Girls

Studies have shown that there is a “male bias” in diagnosing autism due to differing symptoms “including fewer restricted and repetitive behaviors and externalizing behavioral problems in females” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4164392/). Social factors make it harder to diagnose autism in girls and they may need to have more behavioral issues or cognitive disability than boys in order to be diagnosed. Girls with autism may score the same on indicators of friendship or empathy as boys, but not the same as typically-developing girls. They want to socialize more than boys with autism, and have higher rates of depression and suicidal thoughts as teens. Preliminary research shows that the hallmark “brain differences” in autism vs. typical peers seems to hold true for boys, but not girls. A new forthcoming study by Kevin Pelphrey, PhD, director of the Autism and Neurodevelopmental Disorders Institute at George Washington University, will discuss “Listening to our Daughters (and their Sisters): Insights from the Study of Girls and Women Living with Autism,” and is available in as archived webinar at www.IANcommunity.org.

Diagnosis of Autism in Girls

It is noted that “Girls with autism may be harder to diagnose for several reasons, including criteria developed specifically around males” (http://www.scientificamerican.com/article/autism-it-s-different-in-girls/). Furthermore, “criteria for diagnosing autism spectrum disorder (ASD)—are based on data derived almost entirely from studies of boys” (Ibid.). Sometimes girls are misdiagnosed with other conditions such as ADHD, OCD, or even anorexia. Girls are often diagnosed with autism 2 years later than boys (http://www.theatlantic.com/notes/2015/10/autism-women/412270/).

More research is need regarding gender differences in autism. If recent trajectories hold, autism expert Simon Baron-Cohen predicts that “once we’re very good at recognizing autism in females, there will still be a male bias,” Baron-Cohen says “It just won’t be as marked as four to one. It might be more like two to one” (http://www.scientificamerican.com/article/autism-it-s-different-in-girls/).

Families need to be aware that there are differences in symptoms of autism in girls. If they have concerns, they should contact their pediatrician for a screening, then possible diagnosis (see Resources at the end of this article).

Another factor that might delay diagnosis in girls is the use of more than one language at home. In these cases, autism could be masked as a speech delay due to the bilingualism. Many times the pediatrician tells the parent that their daughter needs more time to catch up because she is exposed to two languages at the same time.

Support for Parents with Daughters on the Spectrum

Adolescent girls with autism benefit from engaging in social skills groups specifically designed for them. These groups follow modules that address the needs of this age group, such as: hygiene, grooming and the importance of physical appearance regarding perception, sexuality, dating, friendship and peer pressure, bullying, anxiety, anger management, living skills, social media management, and transition to adult life.

Families that have girls in the autism spectrum disorder benefit from connecting with other parents. Usually the social skills group facilitator meets with the parents, as a group, at the end of each session. When parents connect with each other, they share experiences and resources they have found in the community. In this sense, it also works as a support group for the parents. This connection also fosters friendship among the girls.

In the long run, girls with autism might need ongoing counseling sessions with a professional. Individual counseling is recommended when girls have trouble communicating their feelings and managing stressors in their daily lives, particularly as they approach adulthood and new responsibilities.

For families that do not speak English at home, the problem becomes more complicated when families have trouble finding resources. Parent Centers play a great role assisting families that have difficulties navigating the systems. There is at least one Parent Center in every state. A list of the Parent Centers is available at www.parentcenterhub.org/find-your-center.

Parent Centers provide information and support about special education topics, trainings and local resources. Parent Centers empower families who have daughters with autism by helping them understand their rights and the services to which their children are entitled under the law, including social skills training and counseling.

Resources for Families

CDC Learn the Signs-Act Early

Developmental Milestones: http://www.cdc.gov/ncbddd/actearly/milestones/

 

(in Spanish) http://www.cdc.gov/ncbddd/Spanish/actearly/milestones/index.html

 

If You’re Concerned: http://www.cdc.gov/ncbddd/actearly/concerned.html

 

(in Spanish) http://www.cdc.gov/ncbddd/Spanish/actearly/concerned.html

 

Books on Autism and Girls

 

“Asperger’s and Girls: World-Renowned Experts Join Those with Asperger’s Syndrome to Resolve Issues That Girls and Women Face Every Day!” by Tony Attwood

 

“Pretending to Be Normal: Living with Asperger’s Syndrome” by Liane Holliday-Willey

 

“Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-teen and Teenage Years” by Shana Nichols

 

Lauren Agoratus is the parent of a child with autism/kidney disease. She is the NJ Coordinator of Family Voices, the national network that works to keep families at the center of children’s health care for children with special healthcare needs; in NJ, Family Voices is housed at the Statewide Parent Advocacy Network (SPAN), www.spanadvocacy.org. SPAN is also the home of the state’s Family-to-Family Health Information Center. Lauren can be reached at (800) 654-SPAN or by email at familyvoices@spannj.org. Families can find free help in their state at www.familyvoices.org/states.php.

Myriam Alizo is the mother of two daughters and works at NJ’s Parent Training and Information Center, SPAN, where she helps parents, especially in Spanish-speaking communities, start and run local special education support and advisory groups. She also works with SPAN’s national Center for Parent Information and Resources which provides technical assistance, tools and materials for the more than 90 Parent Centers funded by the U.S. Department of Education to serve families of children with disabilities across the U.S. and territories. Myriam is a member of the NJ Special Education Advisory Council and has been a part of the National Center for Learning Disabilities (NCLD) Parent Leader Team since 2010.

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Women at Work

When I founded Yes She Can in November 2013 I created the motto: Women with Autism. We work. With you. It was my vision that with proper training and support, women with autism could and should join the competitive workforce and work side by side with neuro-typical peers, whether it were shelving books, creating software code, or selling dolls. Back in the spring of 2014 I introduced the readers of Autism Spectrum News to our job skills development program run at Girl AGain boutique. We had only been open for two months so I had little actual experience in achieving my vision.

Now two and a half years later, Yes She Can has worked with 22 women with autism spectrum disorders and related social and learning disabilities; many also have intellectual disabilities.

Like their neuro-typical peers, our trainees truly desire to be independent. They want to work for money, and can – even if it is for just 15 hours a week. Women transitioning from school to adulthood need to stretch, take risks, try and possibly stumble, and learn how to recover. They need to transform from dependent students and social service “consumers” to confident problem-solving women.

Given their social and emotional challenges, the women we serve need a safe and supportive environment to begin their exploration of their capabilities. They also need an environment where they can connect with other women who share their challenges – where they can “be themselves,” as one trainee put it, while learning to stretch.

Typically at school, girls are the minority in co-ed special education classes, where the boys’ agenda can overwhelm the girls’ needs and interests. At our training program at Girl Again, not only do we focus on women’s issues but also our store caters to girls, so our trainees can relate to our customers. This gives them the opportunity to talk about the product with the little girls and their moms and grandmothers, and to assist the girls at the craft workshops where trainees can be leaders. Being the expert is a rare experience for our women.

Our trainees say they can be more relaxed without the concern of young men around them and focus on the skills. The job coaches can also be more direct in coaching on behaviors. So while our all-female training place may not reflect all workplaces, we do think it is a good learning environment.

The Women’s Card

As we know, neuro-typical women’s behavior and presentation is judged more harshly than men. This seems no different for women with autism: clothing, hair style and accessories, weight, table manners, topics of conversation, and posture and presence are held to a higher standard than men. A “quirky” even rude man with a stained shirt is acceptable to his work peers while an “odd” women with sloppy table manners who stumbles at chit-chat is rejected by her work peers. I have heard several women with ASD report that they believed they were fired because of a social faux pas that would be tolerated of men. There is significant pressure for women to “fit in” and that is not something most women with ASD can do and many don’t want to.

While my mission is not to fix this gender bias, we do work on these social skills in our program. That is where typical female peers so are important and helpful to our trainees so we would like to have more typical peer mentors volunteer with program.

Trainees at Girl AGain range in capabilities but they have some common characteristics: anxiety and fear of making a mistake. They wait to be told what to do and they expect help before exerting much effort. They lack resilience. On the other hand they want to please the manager and their job coach and they desire to do a good job. They know they have challenges and they want to overcome them. They want to be included without having to conform.
We do not know if these are uniquely women’s traits but would be delighted to participate in research that studies the differences between men and women with autism in the workplace.

Some of the work behaviors we focus on with our trainees include:

 

Some of the social behaviors we address include:

 

The women in our training program are very interested in social relationships and are motivated to develop work skills in a collaborative setting. We have seen significant development in many of our participants since joining Yes She Can and our goal is to continue to help more young women with ASD.

 

Note: Yes She Can is seeking volunteer job coaches as well participants in an advisory council.

About Marjorie

I am the mother of a 20 year old young woman with ASD. After a 30 year career in corporate marketing, I founded Yes She Can motivated by my experience that the best way to teach an individual with autism is through immersive learning and leveraging their passion. My daughter’s passions are Disney and American Girl dolls. Her career goal is to work at the American Girl store in the doll hair salon. During high school she had been in a career readiness program where she had several internships in addition to being a trainee at Girl AGain. She is currently enrolled in College Steps at Westchester Community College.

For more information, contact Marjorie Madfis, President of Yes She Can Inc. at Marjorie@YesSheCanInc.org or visit www.YesSheCanInc.org. Yes She Can Inc. – Women with Autism. We work. With you.

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Posted in Fall 2016 Issue | No Comments »