Be Mindful, Be Present, Be You: How to Handle Crisis Anxiety

With the world around us a chaotic mess, it is getting harder and harder to avoid becoming a giant, swirling, ball of anxiety. The current pandemic has disrupted our lives and the world as we know it is on hold for the foreseeable future. It has interrupted routines, forced schools to close, and sent many of us to work from home or not at all. It feels as though the rug has been pulled out from under our proverbial feet.

relaxing sunset over water

If you are feeling a growing sense of dread, you are far from alone. Most of us are feeling overwhelmed and afraid, as we are being bombarded with changing facts and statistics on what feels like an almost hourly basis. Yet, it is hard to think about anything but our current crisis.

I am here to remind you that you have a choice in how you respond to the pandemic and its fall out. I am here to remind you that you already know better than to let yourself fall victim to the “what ifs.” I am here to remind you that when you feel most lost, afraid, and overwhelmed, it usually when you are focusing on things you cannot control, like the past and future. Finally, I am here to remind you of the three simple concepts that will help you calm the chaos.

Be Mindful

Sure, the world around you has become very loud and that makes it extra hard to hear yourself, but that just means you need practice more. Take the time and energy to check in with yourself regularly. Acknowledge any feelings you might be having, any thoughts, and any sensations in your body. You might find you are pushing your feelings away or ignoring body signals. Mindfulness practice will help ground you in the present and force you to address your immediate needs. This is great time to do some interoception exercises to keep that mind-body communication line open and clear.

Be Present

Worry lives in the future and the present is the only reality you will ever know. In other words, anxiety is created when we focus on the unknown of the future. Similarly, depression is created by focusing on the unchanging past. The only way to begin limiting your anxiety about our current crisis is to put all your energy into the now. Now is all we can actually control. The best way to combat the anxiety is to make use of now. Ask yourself, what could I be doing now? Who could I be connecting with now? How can I make now enjoyable? Make use of the now, it is all that you are guaranteed.

Be You

It is easy to lose yourself in a crisis like this. Inundated by a constant barrage of media telling us how to feel, it is often hard to remember that we all process stress and chaos differently. Each of us is going through this with our own sets of challenges and our own set of strengths. There is no right way to feel about the trauma we are watching unfold, there is only your way. It is important to remember that we will all respond differently over the coming months and that there is space for all kinds of reactions, including yours. Give yourself, and those around you, permission to respond authentically. You are allowed to feel however you are feeling, even if it is different from the majority.

Putting It into Practice:

Here are some great ways to practice these strategies right now:

Control your input: You get to decide what gets in. Limit your news check ins to 2-3 times a day. Trust me, you will only miss the fake news. The real news gets repeated. Also, make sure that the coronavirus news isn’t your only input. This is a great opportunity to binge Netflix or read a book series.

Take advantage of the slow down: Seriously, the world is on pause, demands are less, and you can benefit. With so much stuff cancelled, you should have ample time to delve into a new special interest, spend some quality time outdoors, enjoy the company of family and pets, or do more self-care. The time is now.

Make a schedule: Keep yourself from falling into inertia by making something of each day. The best way to do that is create a new routine for yourself. Pick a wake-up time and plan out your day. Even if part of that plan is a nap, consciously choose it. Never let a day feel like a waste to you. Intentionally choose how you are going to use your spoons during this new normal.

Music is the answer: There is nothing that can shift your mood faster than music. Use music as a catalyst to lift your mood and ground you in the present. Go ahead, sing out loud and dance like Elaine, a little fun and laughter goes a long way.

Stim out: No better way to create harmony within than to let your stims out. That’s right stim away! For many of us, stimming is a regulator and we are in desperate need of some regulation. Try new fidgets, exchange stims with friends, make a stimmy video, but whatever you do, do NOT hold those stims in.

Get serious: What about taking this time to plan for when it’s over? That’s right, this, too, shall pass, so why not be ready when it does? Use this pause to evaluate your life. What are you missing? What are you NOT missing? Take advantage of the interruption and think about your life. Do a ‘Wheel of Life’ exercise. Create bucket lists. Simply, decide what changes you would like to make and plan how to put those changes in place.

Here’s to hoping this passes quickly. In the meantime, don’t waste time on worry. It’s your one nonrenewable resource, virus or not. After all, there’s no time like the present.

Becca Lory Hector, CAS, BCCS

Becca Lory Hector, CAS, BCCS

About Becca Lory Hector, CAS, BCCS

Becca was diagnosed on the autism spectrum as an adult and has since become a dynamic autism advocate, consultant, speaker, and author with dual certifications as a Certified Autism Specialist (CAS) and Cognitive Specialist (BCCS). With a focus on living an active, positive life, her work includes autism & neurodiversity consulting; public speaking engagements; a monthly blog, “Live Positively Autistic”; a weekly YouTube news show, “Neurodiversity Newsstand,”; and being an Assistant Editor/Feature Writer for Spectrum Women Magazine. An animal lover with a special affinity for cats, Becca spends most of her free time with her many animals, her husband Antonio Hector, and their Emotional Support Animal (ESA), Sir Walter Underfoot. For more information, visit beccalory.com.

This article has been reposted with permission. The original post can be found at www.spectrumwomen.com/featured/be-mindful-be-present-be-you-how-to-handle-crisis-anxiety-becca-lory-hector-cas-bccs/.

Tags: , , , , , ,
Posted in Health and Wellness, Website Exclusive | No Comments »

Periods and Pads and Pain, Oh My! Promoting Independence During Self-Care – Skills for Girls with Autism Spectrum Disorder

As a parent, our biggest concerns for our children involve teaching them to be successful individuals who can advocate for themselves, providing them with an education to help them grow into successful adults, and keeping them safe. A common goal amongst all parents is to raise their children to be independently functioning adults. Typically, we help our children develop the skills necessary to become actively involved in a career, manage their money, and be able to provide for themselves. Beyond these skills, our children are also prepared with strategies to help keep themselves out of harm’s way. As a BCBA preparing females diagnosed with autism spectrum disorder (ASD) for these same life events, it is important to begin teaching many of these skills at a young age.

woman standing in front of green leafed plant

According to Chumlea et al. (2003), 90% of all US girls are menstruating by 13 years of age, which means the average age that girls are beginning to mature is between 10 and 12 years of age. The Centers for Disease Control and Prevention (CDC) estimates that one out of every 151 girls born in the United States will be diagnosed with ASD. Due to the vulnerability of individuals with ASD, and the decreased cognition, communication, and social skills, the rates of sexual abuse in females is roughly one out of every four females (CDC, 2018). So how do we help the female individuals navigate the intricacies of the social world and decrease the likelihood of these crimes and their vulnerability to sexual predators? When preparing female teenagers diagnosed with ASD for these life events, we must introduce skills early and teach them independence, ensuring they are individualized to the level of the learner.

While puberty may be an unfavored topic for families of girls with autism, it is important to discuss the need to educate these children on topics involving: identifying the proper name for their genitals, personal privacy, the skills necessary to maintain appropriate levels of hygiene, and who can help them with personal care skills. Often, these girls are comfortable with an adult being nearby most of their waking hours, and do not hesitate to change their clothes or toilet in front of these adults. Part of our instruction should include teaching these girls to seek out privacy whenever possible (e.g., close the stall door in a public bathroom). There is no single method to teach proper self-care, so it is important to identify the level of the learner and teach them, to the best of their abilities, how to be most independent. Self-care skills include any skill needed to ensure the hygienic cleanliness of the body in addition to caring for oneself during menses. The more independent a young woman can be greatly increases her independence and privacy, along with increasing her potential for involvement within the community and decreasing the likelihood of bacterial infections (Vaezey et al., 2016).

Jennifer Croner, MSEd, BCBA, LBS-PA

Jennifer Croner, MSEd, BCBA, LBS-PA

Stephanie Sigler, MS, BCBA, LBS-PA

Stephanie Sigler, MS, BCBA, LBS-PA

While there is no meaningful difference in the age girls with autism and girls with other developmental disabilities first begin menstruating, several studies report that females with autism experience painful periods, heavy periods, menstrual hygiene issues, cyclical mood and behavioral changes, and an amplification of sensory issues and repetitive behaviors associated with autism (Steward et al., 2018). Several recent studies have surveyed girls with autism and their parents and caregivers, and have noted that menstruation is viewed by some as a distressing event during which preexisting challenges are exacerbated, potentially leading to reduced participation in work, social, and community life (Cummins, Pellicano, & Crane, 2018; Steward et al., 2018). Some of these potential problems can be lessened by increasing the knowledge of menstrual-related issues in both the young girls with autism and their families.

Females with autism should be taught personal hygiene skills to levels as independent as possible and at an early enough age that they can be independent prior to menstruation. Start with pre-requisite skills for feminine hygiene, such as: toileting procedures, including donning and doffing pants and underwear and wiping oneself after toileting; washing their body in the shower and/or tub, including hair care and appropriate cleansing of private areas; along with assessing any fine and gross motor skills necessary for completion of these skills and manipulation of the wrappers and placement of sanitary napkins and tampons. Following baseline measurements, task analyses outlining the specific steps each young girl will need to take to complete these skills should be taught using chaining procedures appropriate to the individual’s needs. It is important to recognize that the overuse of vocal prompting can inadvertently lead to teaching errors into the chain and may interrupt the development of the map of muscle memory necessary to complete the chain. Teach using error correction and errorless prompting when specific skills appear difficult and identify skills that may need to be taught in isolation. The use of visual aids (e.g., schedules, picture books, social stories, video modeling, etc.) can also be helpful for some learners. Consider other adaptations for individual learners (e.g., placing permanent marker lines on underwear to show where to lay the sanitary napkin), the use of loofahs on a wooden stick instead of a washcloth, or the use of a shampoo brush to promote independence whenever possible. Also, consider the need to teach the individual how to recognize when they should use the bathroom – this could be done through the introduction of a self-monitoring device, such as the “Octopus” watch which uses icons to increase independence with individual who aren’t able to tell time on an analog watch, to promote independence with following a bathroom schedule.

While we can’t predict the occurrence of sexual predators or other traumatic events potentially associated with their menses, we can decrease the likelihood that our female clients are at risk by introducing self-care skills to them from an early age. Maintaining independent levels of self-care and generalizing these skills into different environments significantly decreases the need for caregivers to be involved with private events such as maintaining feminine hygiene. As our clients become older and more involved with caregivers outside of their parents and the safe environment of their home, the need for these independent skills increases.

Stephanie Sigler, MS, BCBA, LBS-PA, is a Board-Certified Behavior Analyst and Jennifer Croner, MSEd, BCBA, LBS-PA, is Director of Clinical Services and Professional Development at Exceptional Learning, LLC.

For more information about Exceptional Learning, LLC, please contact our office via phone at (610) 287-4000 or visit our website at www.exceptional-learning.com.

References

Centers for Disease Control and Prevention (2018). Autism prevalence slightly higher in CDC’s ADDM Network. Retrieved from https://www.cdc.gov/media/releases/2018/p0426-autism-prevalence.html

Chumlea, W.C., Schubert, C.M., Roche, A.F., Kulin, H.E., Lee, P.A., Himes, J.H., & Sun, S.S. (2003). Age at menarche and racial comparisons in US girls. Pediatrics 111(1), 110-113; DOI: https://doi.org/10.1542/peds.111.1.110

Cummins, C., Pellicano, E., & Crane, L. (2018). Supporting minimally verbal autistic girls with intellectual disabilities through puberty: Perspectives of parents and educators. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-018-3782-8

Steward, R., Crane, L., Roy, E.M., Remington, A., & Pellicano, E. (2018). “Life is much more difficult to manage during periods”: Autistic experiences of menstruation. Journal of Autism and Developmental Disorders, 48, 4287-4292. https://doi.org/10.1007/s10803-018-3664-0

Veazey, S.E., Valentino, A.L., Low, A.I., McElroy, A.R., & LeBlanc, L.A. (2015). Teaching feminine hygiene skills to young females with autism spectrum disorder and intellectual disability. Behavior analysis in practice9(2), 184–189. https://doi.org/10.1007/s40617-015-0065-0

Tags: , , , , , , ,
Posted in Girls and Women, Spring 2020 Issue | No Comments »

Meeting the Unique Needs of Women on the Autism Spectrum

The research on adults with Autism Spectrum Disorder (ASD) 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 research reports that find women and men with primary ASD are largely similar in symptom presentation (e.g.; 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?

Older sisters with cute little blonde girl - Beauty, family relations and friendship concept

From the Perspective of Women With ASD

As part of the development of Felicity House, a social program in New York City 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.

At the start of 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. Focus group participants already involved in coed social programs further noted that their communication “style” is consistently at odds with their male peers, limiting their social participation. Additionally, unwanted sexual attention was a common experience for the token female in group activities designed for adults with autism.

Marisela Huerta, PhD

Marisela Huerta, PhD

“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.”

“I don’t know how to meet people.”

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

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

Most striking was that the participants quickly zeroed in on their desire for social connections and 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 designed for 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”

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). Yet school age girls with autism show problems maintaining friendships (Hiller et al., 2014) and find it harder to manage social conflict (Sedgewick, Hill & Pellicano, 2019). Girls with autism also report more experiences of relational aggression (Sedgewick et al., 2016). As adults, women with ASD face unique challenges because of societal expectations of women’s social behavior (Bargiela, Steward, & Mandy, 2016). As a result, the social gaps between adult women with ASD and their non-ASD peers may be 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; McCormick et al., 2020). 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 women in general (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 in need of 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 comfortably share experiences and build connections. To provide such opportunities, 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. A careful use of visual supports is required; 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 that social communication needs can be varied. At the group level, this can be accomplished via a menu of programs that caters to diverse needs and interests, including experiences that are rich in opportunities for discussion as well as those designed for participants who prefer hands-on activities. Program content should also be informed by the current context and interests of the women. Differences in social motivation are also important factors that affect participation. Thus, identifying special interests, as well as understanding previous negative experiences, is essential for supporting the individual. Additionally, programs will require participation and staffing models that can account for changing support and 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 between a woman and staff member, with ongoing follow-up as needed. Programming is varied and includes 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 pre-planned modifications with an eye towards facilitating diverse forms of 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 format of the program activities; program 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.

For more information about Felicity House, please visit www.felicity-house.org.

References

Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46: 3281-3294.

Begeer S., Mandell D., Wijnker-Holmes B., Venderbosch, S., Rem, D., Stekelenburg, F., & Koot, H.M. (2013). Sex differences in the timing of identification among children and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43: 1151-1156.

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

Hiller, R.M., Young, R.L., & Weber, N. (2014). Sex differences in autism spectrum disorder based on DSM-5 criteria: evidence from clinician and teacher reporting. Journal of Abnormal Child Psychology, 42: 1381-1393.

Jamison, R. & Schuttler, J.O. (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.

McCormick, C.E.B., Kavanaugh, B.C., Sipsock, D., Righi, G., Oberman, L.M., Moreno De Luca, D., Gamsiz Uzun, E.D., Best, C.R., Jerskey, B.A., Quinn, J.G., Jewel, S.B., Wu, P.C., McLean, R.L., Levine, T.P., Tokadjian, H., Perkins, K.A., Clarke, E.B., Dunn, B., Gerber, A.H., Tenenbaum, E.J., Anders, T.F., Rhode Island Consortium for Autism Research and Treatment (RI-CART), Sheinkopf, S.J., & Morrow, E.M. (2020). Autism heterogeneity in a densely sampled U.S. population: Results from the first 1,000 participants in the RI-CART study. Autism Research, 1-15.

Sedgewick, F., Hill, V., Yates, R., Pickering, L., & Pellicano, E. (2016). Gender differences in social motivation and friendship experiences of autistic and non-autistic adolescents. Journal of Autism and Developmental Disorders, 46: 1297-1306.

Sedgewick, F., Hill, V. & Pellicano, E. (2019). ‘It’s different for girls’: Gender differences in the friendship and conflict of autistic and neurotypical adolescents. Autism, 5: 1119-1132.

Taylor, J.L., Henninger, N.A., & 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, P.J., van Eeten, E., Groen, W.B., Van Deurzen, P.A., Oosterling, I.J., & Van der Gaag, R.J. (2014). Gender and age differences in the core triad of impairments in autism spectrum disorders: a systematic review and meta-analysis. Journal of Autism and Developmental Disorders, 44: 627-635.

Wilson, C.E., Murphy, C.M., McAlonan, G., Robertson, D.M., Spain, D., Hayward, H., Woodhouse, E., Deeley, P.Q., Gillan, N., Ohlsen, J.C., Zinkstok, J., Stoencheva, V., Faulkner, J., Yildiran, H., Bell, V., Hammond, N., Craig, M.C., & Murphy, D.G. (2016). Does sex influence the diagnostic evaluation of autism spectrum disorder in adults? Autism, 7: 808-819.

Tags: , , ,
Posted in Girls and Women, Spring 2020 Issue | No Comments »

Hormonal Fluctuations and Women with Autism: A Call for Increased Awareness and Assessment

The topic of hormonal influences on women with autism has received scant attention from health care researchers. The responses to hormonal fluctuations and/or depletion of estrogen are varied and present challenges in health care prevention and promotion for some women with autism. Treatment decisions for Premenstrual Syndrome (PMS), Premenstrual Dysphoric Disorder (PMDD), Perimenopause, and Menopause can be controversial and complex. Women with autism are at risk for being excluded from this decision-making process.

Woman suffering headache due to imaginary problems in pms, hormone imbalance

Behavioral disturbances before or during menses are a frequent presenting problem in gynecological referrals for women with autism. Several reports/case studies identify marked changes related to menarche (the onset of menses) and menstruation in girls and women with autism (the majority having additional intellectual disabilities): These studies describe cyclical self-injurious behaviors (Lee 2004); an amplification of symptoms associated with autism such as sensory issues, repetitive behaviors, (Hamilton et al. 2011; Lee 2004); and mood symptoms/emotional dysregulation (Hamilton et al 2011; Obaydi & Puri 2008; Lee 2004). Oftentimes, psychotropic medications are prescribed without an adequate investigation of the cyclical nature of these behavioral patterns.

The condition known as PMS and its more severe form PMDD are often not addressed. PMS and PMDD are characterized by two key elements: symptoms (which can differ among women), and their timing in relation to the menstrual cycle.

The cyclical nature and the timing of symptoms are the central distinguishing features of these menstrual-related disorders. In the most typical pattern, symptoms begin one to ten days before menstruation and continue until after the onset of menses. In other cases, symptoms begin just after ovulation and continue until near the end of the period.

PMDD is a classification of mental disorders described in the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-5). PMS has been associated with dozens of different symptoms, though some are seen more frequently than others. Existing health problems are reported to worsen in this premenstrual (luteal) phase of the cycle. Examples common to women with autism are epilepsy, asthma, sinusitis, and chronic depression (see Table 1).

Table 1 - Common PMS Symptoms

As there are no specific tests for the diagnosis of PMS, monthly charts illustrating occurrence of symptoms are necessary to diagnose the syndrome. Documenting signs and symptoms of PMS can present a challenge for health care providers of women with developmental disabilities. Often the history is either unobtainable or incomplete. PMS Assessment is best approached when charting of symptoms daily consistently occurs over a three-month interval. Bergen’s Promise, a care management organization within the New Jersey Children’ System of Care, serves a large population of individuals with autism. Through an integrated pediatric behavioral health home, the organization utilizes menstrual tracking tools, adapted from the Managing Menstruation resource from the Queensland Centre for Intellectual and Developmental Disability (Taylor, Carlson, Griffin, & Wilson, 2010), to encourage consistent charting.

Those who experience PMS often have symptoms which are typically associated with hypoglycemia, such as headaches, sweating, fainting and dizziness. These women frequently binge or crave chocolate and salty foods such as potato chips.

Women with autism PMS or PMDD may experience a symptom-free interval characterized by tremendous amounts of energy followed by a low energy time interval: relaxation and regular exercise are a must.

As women with autism age, hormonal fluctuations can impact physiological, psychological/behavioral, and cognitive dimensions of wellbeing. The transition to menopause can be divided into three phases: Premenopause, Perimenopause, and Postmenopause.

In Premenopause, hormonal fluctuations become more pronounced although the cycles remain regular. As there is a decrease in serotonin and endorphin withdrawal, menstrual migraines and mood changes become more evident. Insulin sensitivity brings on food cravings and appetite changes. If a woman with autism experiences PMS symptoms these will become more severe. Water retention, GI symptoms, breast tenderness, and heart palpitations may also occur.

In Perimenopause, the hormones of estrogen and progesterone decrease with a subsequent change in the length of the cycle and change in monthly flow. There is a further decrease in serotonin, endorphins, dopamine and estrogen brain receptors resulting in mood changes, headaches, insomnia, fatigue, and forgetfulness.

Insulin sensitivity continues to enhance food cravings and appetite changes. There is also a decrease in thyroid activity, metabolic rate and subsequent weight gain. Hot flashes, heart palpitations, skin changes (including vaginal dryness) and formication (a sensation like insects crawling on an area of skin may occur).

In Postmenopause, the woman with autism may experience some of the same symptoms of Perimenopause but to a lesser degree. Bone loss (osteoporosis) and risk of heart attack increases in this phase. Abdominal fat and an increase in waist to hip ratio also occurs.

In general, women with autism are not adequately prepared for these menopausal phases. Menstrual knowledge is commonly addressed as a hygiene issue for this population and their caregivers. Information given by the health care provider to women with autism regarding PMS/PMDD, premenopause, perimenopause and both surgical (hysterectomy-induced) and natural menopause often is scant or non-existent. It is interesting to note that in the US, education and income level are related to the likelihood of having a hysterectomy.

This group and those helping them make decisions need to be aware of the risks and benefits of Hormone Replacement (HRT).

Now that women with autism are routinely living past menopause, this aspect of life needs to be part of the health promotion strategies for this population.

The interactions of psychological, sexual, physical, vocational and recreational decisions concerning the perimenopausal and postmenopausal phases are complex and powerful. Approaches to hormonal changes effect mental health, energy levels, the cardiovascular system, bone strength, sexuality, and potential cancer risk. It is in this context that female self-advocates and all persons involved with the health and well-being of women with autism should become aware of the effects of hormonal changes during the luteal phase of menstruation (Premenstrual Syndrome), the Premenopausal phase, the Perimenopausal phase and Postmenopausal phase. Knowledge regarding health status and disease risk during these stages is essential. Increased awareness and assessment are the first line of implementation and should be implemented to promote optimal health in the continuum of hormonal passages for all women with autism.

Jan Schlaier, EdD (c); FNP-BC, is Director of Health Services and, Jacqueline Berko, RN BSN, is a Behavioral Health Home Nurse at Bergen’s Promise. We would like to thank Dean Pastras, CEO of Bergen’s Promise, for his leadership in providing integrated healthcare to Bergen’s Promise. For more information, please visit www.bergenspromise.org.

References

American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders. Ed 5. Washington, DC American Psychiatric Association.

Hamilton A., Marshal MP., Murray PJ. (2011). Autism spectrum disorders and menstruation. Journal of Adolescent Health. pp. 49: 443-445.

Lee DO. (2004). Menstrually related self-injurious behavior in adolescents with autism. Journal of the American Academy of Child and Adolescent Psychiatry. 43: 1193.

Obaydi, Puri BK. (2008). Prevalence of premenstrual syndrome in autism: A prospective observerated study. The Journal of International Medical Research. pp. 36: 268-272.

Taylor, M., Carlson, G., Griffin, J., & Wilson, J. (2010). Managing Menstruation. Retrieved from https://qcidd.centre.uq.edu.au/files/262/Menstrual%20Management%20Booklet%202010%20in%20colour.pdf

Tags: , , , ,
Posted in Girls and Women, Spring 2020 Issue | No Comments »

The Daniel Jordan Fiddle Foundation for Adult Autism Shares Its Pioneering Mission On the Global Stage in Beijing, China

On August 22-23, 2019, The Daniel Jordan Fiddle Foundation attended the International Symposium on Rehabilitation and Advocacy for Autism sponsored by the Ai You Foundation at the Crowne Plaza in Beijing, China as an invited Keynote addressee.

Over the course of two days, this international conference featured lectures on psychosocial support for families with Autism, organizational management of Chinese rehabilitation centers, and – led by renowned behavioral analyst Vicci Tucci – how the Competent Learning model fosters inclusion for Autistic children. Two of our founding Board of Trustees members, Howard and Frederick Fiddle, proudly represented The Daniel Jordan Fiddle Foundation as the only international organization invited to share its trailblazing mission, representing the US Charitable Sector at the Conference.

DJF Foundation in China

Howard Fiddle participated on an international panel that discussed capacity building and vital support from the charitable sector. Frederick Fiddle presented a KEYNOTE address on the work of The Daniel Jordan Fiddle Foundation since its inception. This includes the establishment of hundreds of adult Autism programs throughout the United States, educational and public service publications relating to topics focused on adult Autism and most recently the historic establishment of five endowed funds at America’s leading universities, each focused on unique areas that vitally impact adults diagnosed with Autism Spectrum Disorder. Tugging at the heartstrings of the audience, Frederick Fiddle led a moving story of Danny Fiddle, his late son for whom the foundation is named.

Sponsoring the event, the Ai You (AY) Foundation spawned with the then new foundation laws in China in 2004, uses its entrepreneurial staff to push Chinese nonprofits into the 21st century. AY dedicates its efforts to the medical needs of children who need it most, including the Ai You HeKang Rehab Center for children with Autism.

The Daniel Jordan Fiddle Foundation shared its visionary mission of worldwide acceptance of neurodiversity and the need to value all individuals. Starting out in New Jersey, Executive Director Linda Walder expanded the foundation’s outreach to all forms of media worldwide, including USA Today, the New York TimesTraditional Home and Redbook magazines, to name a few. Today she writes in the blog she established entitled, Autism for a Lifetime: Finding Joy in the Journey. The Daniel Jordan Fiddle Foundation shared its innovative and collaborative model that focuses on joint-ventures and partnerships aimed to achieve specific societal change.

The Daniel Jordan Fiddle Foundation assures a global focus on cutting edge research, program development, and public policy in the world of Autism through the strategic implementation of The Daniel Jordan Fiddle Foundation Adult Autism Endowed Funds. Located in the nation’s elite universities, The Daniel Jordan Fiddle Foundation five Adult Autism Endowed Funds each focus on a specific area of adult Autism. The partnership with Yale Medical School, for instance, is the first Fund in the nation dedicated exclusively to support research projects relating to adults living with Autism Spectrum Disorders (ASDs). Helping those with ASD express themselves artistically, Brown University’s Theatre Arts and Performance Studies (TAPS) nurtures both undergraduate and graduate collaboration with the Autism community, fighting stigma and revealing the nuances of neurodiverse living. The Rutgers School of Social Work sends three to four Fellows to work as direct clinicians with family members of autistic adults and develop a web-based resource guide for families to use nationwide. At the University of Miami through The Daniel Jordan Fiddle Foundation Transition and Adult Programs at the Center for Autism and Related Disabilities, model programs focus on job training and attainment, workplace support and social skills development. Yet these efforts would be naught without extensive public policy advocacy in all levels of government. Thanks to our gift of $100,000, fellows at the Watts College of Public Services and Community Solutions at Arizona State can develop a comprehensive policy agenda serving the needs of adults with ASD and their loved ones through The Daniel Jordan Fiddle Foundation Center for Public Policy located at First Place in Phoenix, Arizona.

“We blaze trails that aim to inspire the world to embrace the fact that Autism is a lifelong challenge, that neurodiversity is valued as a matter of human rights, and that the public and private sectors have an obligation to create the supports and services necessary for all individuals diagnosed with Autism Spectrum Disorders to live their best life possible,” said Linda Walder. The opportunity to present this vision not only opened doors to a whole new world but successfully inspired the international and Chinese-based audience to view Autism as a lifelong journey with promising destinations as diverse as those who have been diagnosed. The Daniel Jordan Fiddle Foundation’s person-centered initiatives and programs have already helped countless adults with ASD lead fulfilling lives, and assuredly will for generations to come around the world.

Ryan Schindler is an Autism Advocate in Atlanta, Georgia. He has an MPA from Syracuse, University and specializes in Public Policy. He loves playing board games, watching tv, and singing in a barbershop quartet. Currently Ryan is working on projects for The Daniel Jordan Fiddle Foundation.

This article has been reprinted with permission. The original article can be found at https://djfiddlefoundation.wordpress.com/2020/02/23/the-daniel-jordan-fiddle-foundation-for-adult-autism-shares-its-pioneering-mission-on-the-global-stage-in-beijingchina-by-ryan-shindler/.

Tags: , , , , ,
Posted in News, Spring 2020 Issue | No Comments »

Mentors Over White Knights – How to Support Autistic Women for Success

Like many neurotypical girls, I spent a lot of time growing up either reading or watching fairy tales in books or television. What’s peculiar about women on the Autism Spectrum is that our advocates sometimes mimic those white knights in shining armor; Meaning that someone on our care team will want to rush to our side and offer their help when we’re having a moment of sensory overload. In retrospect, I truly appreciate their concern. Now that I am 20+ years into my diagnosis, I am now asking you to listen instead of help.

Girl with her mother

Over the last 2 years, I have been actively mentoring young people who are also on the Autism Spectrum. Their abilities and interests are a spectrum in and of itself. As I work with them to figure out plans for their careers, I primarily take that and what accommodations are needed into account. These interests and accommodations require every mentee – especially female ones – to self-advocate in professional settings. In order to help us achieve our dream careers and live independent lives, I’m imploring everyone who advocates on behalf of a woman on the Autism Spectrum to take two major things into account.

Talking It Out When You Meet Us Halfway

First of all, it helps to understand that this condition should not be treated like a disease that should be pitied. In my humble opinion, having Autism Spectrum Disorder (ASD) only becomes a problem if encouragement and services aren’t provided after diagnosis. Women with ASD aren’t helpless. Not fitting the mold of what it means to be a typical girl or woman shouldn’t negate what we are capable of. Just because we have trouble picking up non-verbal cues and social norms doesn’t mean that we cannot achieve the same amount of personal and professional success as neurotypicals. When you interact with us, give us the benefit of the doubt if we struggle with interpersonal communications at first. For example: If we don’t understand when it’s appropriate to leave a tip for a server at a restaurant, take the time to explain these social norms to us in practical words. Use concrete directions so that we know what to do on our own. As you are teaching us the skills that we need for meeting social expectations, stop assuming that we learn social cues by observing what other people do.

Train Us to Be Our Own Heroes

Kate Trammell, MA

Kate Trammell, MA

If you really want to support a girl or woman with Autism, then train us to be our own advocates. In other words, encourage us to grow into women who can support or rescue ourselves. There’s still so many of us who don’t get diagnosed until later in life, if at all. In a 2018 report, the Autism and Developmental Disabilities Monitoring (ADDM) Network reported that “males were four times more likely than females to be identified with ASD (Baio et al, 2018, 2). In female-only support groups for women on the Spectrum, I am considered one of the unique Aspies that received a diagnosis as a child. Even now, most people are surprised when I disclose. More than one person has said “but you’re so eloquent.” I took this response to mean that since I appear to enjoy socializing and can maintain eye contact with whomever I am speaking with at parties, I don’t fit into the stereotypical “Rain Man” mold for a person on the Spectrum.

As you might tell with this sociable Aspie, some stereotypes don’t apply. In order to find out what being on the Spectrum means to us, might I suggest that you listen to us before automatically assuming that we are in need of whatever help that you can provide as a neurotypical? When I’m feeling anxious and stressed, I prefer going somewhere completely quiet by myself or going for a run alone. When I mention how I am feeling to someone that I’ve disclosed my condition with, sometimes their reaction is to automatically offer something that helps them. What you need to understand is that we’re not like you.

So, if you want to support us, understand that what helps you won’t always help us. Ask us questions about what being on the spectrum means to us. Start by asking if there’s anything specific that makes us feel overstimulated or unregulated. Asking us about what we do to cope in these overwhelming moments can also bridge the divide of what to do in those tense, overstimulating situations. Knowing the person leads to knowing what you can do to help them figure out how to help themselves. If helping means standing to the side as we flap or squeeze our hands in order to calm ourselves, then you are doing your part to help. I’ve said it before with self-advocating, but the “Advocating through Asking” approach applies to anyone who wants to help women with ASD.

In order for us to lead independent and fulfilling lives, we need to know how to care for our conditions ourselves. In addition to self-care, we need to learn how to speak up clearly and appropriately when the time comes to self-advocate. IEP meetings and support services don’t exist in every space where an Autistic woman might venture into. Any advocate should encourage these women to own their ASD as a strength and speak up for what they need in terms of care. It is this woman on the spectrum’s belief that these tactics are the best way that we can be successful.

If you would like to discuss this approach more, please follow up with me through email at thekatetrammell@gmail.com. For other samples of my work, please review my LinkedIn page: www.linkedin.com/in/thekatetrammell/.

References

Baio J, Wiggins L, Christensen DL, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Summ 2018;67(No. SS-6):1–23. DOI: http://dx.doi.org/10.15585/mmwr.ss6706a1.

Tags: , , ,
Posted in Advocacy, Girls and Women, Spring 2020 Issue | No Comments »

Considerations in Diagnostic Assessment of Females for Autism Spectrum Disorder

The literature suggests that autism spectrum disorder (ASD) may go undiagnosed in females who do not have intellectual and/or language impairment (e.g., Mandy et al, 2012). Research on differences in ASD symptom presentation in females versus males is not yet well-developed and findings across studies are equivocal. The Diagnostic and Statistical Manual-5th Edition (DSM-5; American Psychiatric Association (APA), 2013) indicates that females may present with less impairment in social communication skills than their male counterparts (p. 57) and that for some individuals with ASD, impairments that do exist may not become an area of concern for self or others until contextual demands exceed compensatory strategies (e.g., camouflage; see Head, et al, 2014; APA, 2013). Clinical practice indicates that adolescent females may experience an increase in anxiety and/or develop depression in response to an increasing self-awareness that they are “different” than their peers. This can lead parents/self to pursue research on-line about symptoms and to discuss concerns with others. In some cases, this leads to the pursuit of a diagnostic assessment.

Little child girl with her mother at a doctor on consultation

Assessing females for ASD should follow best-practice guidelines, the same as is the case for males. Best practice in ASD diagnostic assessment recommends using multiple methods and informants (e.g., Magyar & Pandolfi, 2012; Ozonoff et al., 2005). Practice considerations include:

Data obtained from the assessment should be analyzed for evidence of ASD core impairments using the DSM-5 symptom criteria as a guide. Differential diagnostic practice should be applied for ASD diagnosis with/without co-occurring behavioral health conditions. For females without a developmental history of delays or impairment, particular attention should be paid to:

Caroline I. Magyar, PhD, BCBA

Caroline I. Magyar, PhD, BCBA

In addition to following the considerations in best-practice diagnostic assessment, there are a couple of other considerations that, if applied, may increase the likelihood of earlier identification of females at risk for ASD. One, increased awareness and knowledge of the risk factors associated with ASD and the myriad of ways these may present. ASD is a neurodevelopmental condition and early signs may be related to age-inappropriate behavioral reactions such shut-downs/meltdowns, avoidance of social situations (including school refusal); age-inappropriate and excessive/indiscriminate social approaches (e.g., poor peer choice, internet safety issues); developmental factors such as cognitive and language impairment(s); and the onset of behavioral health conditions (e.g., anxiety disorder, depression). The presence of one or more of these factors may moderate and/or overshadow the individual’s primary set of symptoms (i.e., ASD) and result in a delay in diagnosing ASD. Therefore, increasing awareness and knowledge of risk factors and how symptoms present is critical.

A second consideration is for those professionals on the “front lines” (i.e., pediatricians, school personnel, counselors). These professionals should consider adopting screening practices that can increase earlier identification. This can include the use of one or more methods of assessment such as record review, interview, and the administration of a valid and reliable rating scale. These considerations can be applied to any condition that warrants early (or earlier) identification such as behavioral health conditions in youth with ASD (e.g., Magyar & Pandolfi, 2009).

Dr. Magyar, a NYS Licensed Psychologist & NYS Board Certified Behavior Analyst in Rochester, NY, provides diagnostic assessment and treatment services to adolescents and adults with autism spectrum disorder (ASD). She focuses much of her practice on the assessment and treatment of females with ASD. Visit her website for information on her services and for contact information: www.magyarpsychservices.com.

References

American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders: 5th Edition. Washington, D.C.: Author.

Corsello, C., Spence, S., & Lord, C. (2012). The Autism Diagnostic Observation Schedule-2nd Edition. Western Psychological Services.

Head, A., M, McGillivray, J.A., & Stokes, M. A., (2014). Gender differences in emotionality and sociability in children with autism spectrum disorder. Molecular Autism, 5:19.

Magyar CI, Pandolfi V. (2009). Issues & Considerations in Assessment & Intervention of Mental Health Disorders in Children with Autism Spectrum Disorders. Autism Spectrum News, fall.

Magyar, C.I., & Pandolfi, V. (2012) Considerations for establishing a multi-tiered problem-solving model for students with autism and emotional-behavioral disorders. Psychology in the Schools, Special Edition; 49: 975-987.

Mandy, W, et al (2012). Sex differences in autism spectrum disorder: Evidence from a large sample of children and adolescents. Journal of Autism & Developmental Disorders, 42, 1304-1313.

Ozonoff, S., Goodlin-Jones, B.L., & Solomon, M. (2005). Evidence-based assessment of autism spectrum disorders in children and adolescents. Journal of Clinical Child and Adolescent Psychology, 34(3), 523-540.

Schopler, E., VanBourgondien, M.E., Wellman, G.J., & Love, S.R. (2010). The Childhood Autism Rating Scale-2nd Edition. Western Psychological Services.

Tags: , , , ,
Posted in Assessment and Diagnosis, Girls and Women, Spring 2020 Issue | No Comments »

Medicaid Managed Care Is Essential for Persons With Intellectual and Developmental Disabilities

In New York State, persons with intellectual and developmental disabilities are one of the last groups of Medicaid recipients to be included in the State’s coverage under Medicaid managed care. Close to 5.8 million of the 6.2 million Medicaid recipients are enrolled in Medicaid managed care. For the I/DD field, New York spends over $8.0 billion for approximately 125,000 persons. Over 90% of the spend level is for long-term services and supports mostly covered by a home and community-based waiver.

Doctor holding a jigsaw puzzle with MEDICAID word

At the outset of this article, it is important to state that the field of I/DD is facing a severe fiscal crisis of its own. The field has not had a cost-of-living adjustment for nine years.

Since 2012, New York State has been developing an appropriate plan for Medicaid managed care (MMC) for the I/DD field. Delays have occurred because of concerns of advocates, providers, and families. State officials have concerns about the cost of starting-up MMC for the field of I/DD and the actuarial analysis that did not show any savings from MMC.

However, the State Office for Persons with Developmental Disabilities (OPWDD) has recently released a new draft of a revised plan. Over the past two years, OPWDD has been focused on two distinct areas: (1) improvement in care management processes using a home health model—as a first step towards manage care; and (2) creation of a policy framework for the implementation of provider-led managed care.

Arthur Y. Webb

Arthur Y. Webb

A new draft version of the New York State Medicaid Managed Care Organization I/DD System Transformation Requirements and Standards to Serve Individuals with Intellectual and/or Developmental Disabilities in Specialized I/DD Plans – Provider Led (SIPs-PL), which is referred to as the Qualification Document, was released for stakeholder review and comment.

In July 2018, DOH and OPWDD launched an enhanced care management program to support individuals with developmental disabilities and their families. This program consolidated more than 350 agencies providing Medicaid Service Coordination into seven regional provider-controlled Care Coordination Organizations (CCOs) providing Health Home Care Management under the federal program. At the same time, these CCOs expanded the role of new care managers, moving from OPWDD service-centric Individualized Support Plans (ISPs) to integrated and coordinated health and habilitative services through an expanded Life Plan. Approximately 100,000 individuals transitioned to this new model.

I want to address why Medicaid managed care is essential for persons with I/DD. MMC works for the field of I/DD because:

I understand the reality of how hard it is to build Medicaid managed care for special populations having been directly involved in creating plans for special populations including for persons with HIV/AIDS and for the frail elderly. I also understand that there a few national models we can look to where plans in other states have successfully rolled out special plans. So, the evidence is limited to support the use of managed care for populations like those with I/DD.

What gives me some sense of confidence in taking on managed care for the I/DD population is the recent success of rolling out the comprehensive care management program under the federal health home requirements and funding. These Care Coordination Organizations are all provider collaborations covering close to 100,000 persons and were rolled out in record time in partnership with OPWDD. Both of these factors are core ingredients in implementing managed care. While the CCOs have only been operating for 20 months, and it is too early to declare a complete success, they show what can be done using a partnership between providers and the state.

I would also point to a start-up specialized managed care plan called Partners Health Plan (www.phpcares.org). Partners Health Plan is New York State’s only fully integrated duals advantage plan dedicated to serving individuals with intellectual and developmental disabilities and their families. By combining coverage and provider networks for Medicare, Medicaid, and IDD services, Partners is able to provide its members a cohesive, easy-to-navigate plan of care that is tailored to each individual’s needs. This is a small federal and state demonstration with 1700 enrollees (March 2020).

It gives me some pause in looking at the experience of how the behavioral health field has fared in being integrated into managed care. This experience has been very slow and fraught with implementation issues and is, perhaps, several years from fulfilling the promise of managed care for persons with behavioral health needs.

In the face of these initiatives, there are legitimate concerns raised by I/DD stakeholders and they are the following:

Okay, I can hear stakeholders yelling out Yes to these concerns. However, in my optimistic approach to life, and with my experience of 18 years in state public service and 25 years as a provider and consultant, I would say that you have to start somewhere to build the future. And, if we want to control or shape the future we have to act. So, let’s start building the foundation for managed care because it is the most effective and efficient way to better use public funding to meet the needs of persons with Intellectual and Developmental Disabilities.

Arthur Y. Webb was the former commissioner of OMRDD (now OPWDD) from 1983 to 1990 and Executive Director of Division of Substance Abuse Services (now OASAS) from 1990 to 1992. Mr. Webb has held several senior executive positions in government and the nonprofit sectors. For the last ten years, he has been a consultant working with numerous nonprofits to translate public policy into innovative solutions. Presently is the Executive Director of the New York Integrated Network for Persons with Intellectual and Developmental Disabilities (a nonprofit collaboration of 12 providers). Contact: arthur@arthurwebbgroup.com or 917-716-8180.

Tags: , , ,
Posted in Service Providers / Treatment Professionals, Spring 2020 Issue | No Comments »

Addressing the Female-Specific Challenges of Autism at Yes She Can

Empowerment is the theme that is woven into the training model at Yes She Can, Inc. Training young women with autism to be successful employees starts with a shared belief that women with autism can develop powerful voices in their own lives and in supporting the lives of others.

We integrate training around the specific challenges to women; as well as focusing on learning basic employment and business skills while also teaching and supporting emotional regulation skills and building social competencies. Behavioral skills (often referred to as soft skills), generally the most challenging for our trainees, is our focus area. Developing strategies to manage one’s own anxiety and behavior, to feel confident in interacting with a boss or co-worker, shifting tasks or responsibilities, and taking someone else’s perspective are just a few of the skills we address.

Baneesha discussing her blog post ideas with her coach, Laura

Baneesha discussing her blog post ideas with her coach, Laura

We want our trainees to develop employment readiness skills to be prepared to move onto more challenging and independent settings. Participants gain competencies at their own pace, with direct feedback from both coaches and managers, which builds confidence not only at work but in all aspects of their lives.

Societal expectations of women in general differ from the expectations of men. The most common expectations of women are that of a nurturing, intuitive and socially connected person – yet, these are the most common challenges of both women and men on the spectrum.

Women with autism are often more adept at observing and learning social norms, enough to present as perhaps a bit quirky but able to “pass” as neurotypical. We see the impact of the often-herculean efforts to “pass” leading to heightened levels of hypervigilance, high levels of anxiety, often retreating into their own world and physical and emotional exhaustion. Feeling confident in their ability to interact with the world is a challenge, particularly when young women are cognitively aware that they have “committed” all sorts of faux pas, even if they don’t understand the social rules they have broken.

Some women with autism, who have less ability to observe and learn simple social norms, are described as cold or blunt. Understanding another’s point of view, the concept of theory of mind, challenges both men and women with ASD. Yet, it is more socially acceptable in the work world for men to be blunt and direct. Women with ASD who present as “unfeeling” and more direct are often viewed as inappropriately aggressive.

Training at Yes She Can includes non-judgmental discussions about expected social norms vis a vis interacting with co-workers, bosses, coaches and customers. Discussions not only include the “what” but also the “why” of social norms. Understanding the purpose of the business where the training takes place is a part of these discussions and explains the “why” of business processes, even if trainees disagree with the process. Whenever possible, social rules are spelled out and practiced. Comparing one situation to another similar situation is necessary since generalized learning is so challenging.

Trainees at the Yes She Can program are frequently apologizing for the things that they say, or behavior they are unsure of or for missing cues. We encourage and support making mistakes: trying out or practicing new skills means making mistakes without apology and leads to more integrated learning and confidence.

Building confidence also comes from experiencing the expectation of success. Each person’s success may be defined differently however, all trainees participate in identifying their goals and the steps involved in reaching those goals. Goals may include working towards mastering a specific skill or it may include being aware of how you present yourself in the world.

We recognize that there are different expectations for men and women. Men who are unshaven and casually dressed are likely to be more accepted than women who have not brushed their hair and wear more casual clothing. For many young women on the spectrum beginning to understand how their hygiene and appearance impact how they are perceived and what kind of impression they make often becomes an important goal. Presenting with appropriate hygiene is challenging for many. Matter of fact conversation, visual stimuli, taking perspective about how others react to poor hygiene and availability of toiletries lends itself to honest, caring and genuine feedback. We encourage individual style and choices with increased knowledge about the impact their choices have in their lives in the world. Confidence comes with increased self-awareness and realistic feedback.

Recognizing the stress created when plans or routines change is particularly important for women who are working so hard to keep their anxiety and uncertainty under control. At Yes She Can we explain why business priorities change and the value of trainees being part of the team to meet management goals. Developing strategies to manage changes in expectations becomes important. One of those strategies might be taking a short break. We accept the need for a break and acknowledge that most employees take informal breaks throughout the day (a trip to the bathroom or water cooler). We talk about self-soothing strategies, (listening to music, playing a quick game on-line, working on a word puzzle) and getting back to work. We ask participants to identify how much time they think they need to decompress and set timers accordingly to return to work. Learning how to manage anxiety is a critical and transferrable skill.

Teamwork is emphasized, knowing that each trainee may have differing abilities to take on different parts of the work. When business priorities are met, the team can see the collaborative successes as well as the individual efforts that went into meeting the goal. Trainees can experience pride in knowing that they contributed to and can be relied upon to work towards the accomplishment of a goal. Confidence comes with knowing the value of their contributions.

Confidence also comes from external reinforcement of repeated successes. Increased knowledge and self-confidence begins to allow for more independent decision making and ultimately generalization of skills to other settings. Our curriculum includes regular assessments which capture the data measuring skill development. Our trainees apply their skills they gain at work to their home and community lives. Families report on the confidence and skills their daughters develop, and how life-changing the program has been.

Lesli Cattan is Director of Training at Yes She Can, a nonprofit dedicated to helping young women with autism develop transferable job skills leading to employment and greater independence. Yes She Can operates its job skills training program at Girl AGain boutique. We welcome visitors to see our program in action at Girl AGain boutique, located at 4 Martine Avenue, White Plains, NY 10606. For more information, visit www.YesSheCanInc.org and www.GirlAGain.com.

References

Attwood, T, (2007). The Complete Guide to Asperger’s Syndrome. Jessica Kingsley Publishers

Hendrickz, S. (2015). Women and Girls with Autism Spectrum Disorder. Jessica Kingsley Publishers

Roberson, K. Diagnosing Asperger’s in Women: The Invisible Dilemma. Retrieved from www.kennethrobersonphd.com/diagnosing-aspergers-in-women-the-invisible-dilemma/

Wutkiewicz, Kim, Asperger and Autism Spectrum: Women and Girls. Retrieved from www.aane.org/women-asperger-profiles/

Tags: , , , , , ,
Posted in Girls and Women, Spring 2020 Issue | No Comments »

Providing Menstrual Care Instruction to Adolescents with Autism Spectrum Disorders

Adolescence is a developmental period that brings challenges to all children and parents. More extensive challenges can be experienced by children with Autism Spectrum Disorder (ASD) and their families. Understanding and coping with the physical, social, and emotional changes of adolescence is difficult for young teens. The socialization, communication, and learning challenges associated with ASD contribute to the greater challenges faced by these teens. Individuals with ASD often take longer to adjust to and understand changes in their lives than typically developing teens. High quality sexuality education is essential in preparing adolescents for the physical and social changes they’ll be experiencing. For students with ASD, sexuality education material generally needs to be adapted to effectively provide for acquisition of essential knowledge and skills. Important areas of sexuality education focus include personal boundaries and space, understanding the difference between public and private, prevention of sexual abuse, and personal hygiene skills.

Menstruation social story

One area that has not received sufficient attention in the literature is skill instruction for menstrual care. The ability to independently manage menstrual care provides women with disabilities greater privacy and more extensive life options. At AHRC New York City schools, a multifaceted approach to menstrual care instruction, addressing both knowledge and skill acquisition, has been found to be most effective.

Social Stories

Knowledge of menstrual care should include an understanding of what menstrual flow will look like, that the flow is normal for girls, that it will happen for five or six days each month, and that special hygiene skills must be performed. We have found the use of Social Stories to be very effective for students unable to understand this information through traditional instruction.

Lisa Barzotto, MS, BCBA, LBA

Lisa Barzotto, MS, BCBA, LBA

Mary Donahue, PhD, BCBA-D, LBA

Mary Donahue, PhD, BCBA-D, LBA

Social Stories is an instructional approach using easily understood information to provide students with ASD an understanding of events, behaviors, and social rules for a wide range of situations. Ballen and Freyer (2017) describe Social Stories as explaining “a situation, concept, or social skill from the perspective and comprehension level of a child with ASD” (p266). Through the use of short text and relevant cues, the expected behaviors for a given situation are provided. Social Stories typically consist of five to ten sentences, utilizing certain sentence types. They generally consist of two to five descriptive sentences related to the situation, one directive sentence explaining appropriate behavioral response to the situation, one perspective sentence depicting the feelings and response of others, and one control sentence depicting how and when one would use the learned strategies and skills. Social Stories effectively answer the relevant “wh” questions for the situation, such as when, where, and why the skill will be needed. In addition to text, pictures are often included in the Social Story to add additional cues or clarification.

Social stories have been demonstrated to be an effective strategy for menstrual care instruction for girls with ASD. Klett & Turan (2012) effectively taught girls to independently complete an 11-step bathroom routine for changing a sanitary pad through the use of Social Stories and an instructional task analysis. They used three Social Stories with the girls, “Growing Up,” “My Period,” and “How to Take Care of My Period” along with skill instruction using the task analysis.

AHRC NYC schools have used Social Stories to address a variety of issues related to emerging sexuality, including boundaries, privacy, relationships, and menstrual care. Specific to menstrual care, Social Stories have been implemented that address general information about menstruation, and specific behaviors related to changing a menstrual pad and related personal hygiene tasks. Social Stories are individually developed for each learner. In addition to considering the receptive language level and reading ability of the student, it’s important to consider any variations in language used by the family for specific terms, such as “period” or “time of month,” etc. Consideration also needs to be given to various skill expectations for the home setting, such as where soiled underwear should be placed, or how to dispose of the pad. Based upon the learner’s ability, there will need to be variation in the type and extent of visual material included in the Social Story. Incorporating pictures is often helpful in facilitating understanding of concepts and related feelings. When more extensive information is needed, it is often best to write separate Social Stories for different aspects of the situation, rather than making one long story. For example, a separate Social Story might address coping with PMS. Teens with ASD will experience the same symptoms of premenstrual syndrome (PMS) as typically developing teens; however, teens with ASD may find it more difficult to communicate or regulate the emotions that might accompany PMS. A Social Story might describe how she might be feeling (e.g., irritable, trouble concentrating, sore stomach, sleepy, etc.).

A significant advantage of Social Stories is that they allow for repeated review of the same information without variation. A copy can be sent home so parents can also review the Social Story, especially in context of personal hygiene care.

AHRC Spring 2020

ABA-Based Instructional Strategies

Applied Behavior Analysis (ABA) uses evidence-based strategies to systematically teach new behaviors. Task Analysis and Chaining are common ABA instructional approaches. Task Analysis involves breaking a task down into sequential component steps that can be targeted for instruction. Chaining involves sequentially teaching these steps through use of prompts and differential reinforcement. Menstrual care skills have been effectively taught using these approaches in a number of studies (Ersoy, Tekin-Iftar, Kircaali-Iftar, 2009 and; Veazey, Valentino, Low, McElory, LeBlanc, 2016).

At AHRC NYC schools, instruction using task analysis and chaining has been provided both using dolls and in vivo training with the student. Instruction using dolls can include a simulation of a soiled pad with food coloring. Task analysis steps include removing and properly disposing of the soiled pad, replacing it with a clean one, and following proper hand washing procedures. Similar strategies can be provided during in vivo training depending upon the support needs of the student. Repeated instruction on specific task analysis steps is provided using modeling, a prompt hierarchy, and response feedback, including error correction or reinforcement. Video modeling can also be considered as a potential option for instruction. Consideration needs to be given as to whether instruction will only take place during menstruation, or also will be provided at other times. Providing more frequent instruction facilitates faster learning, but may cause confusion for some students as to when the skills need to be performed.

Some students may require ongoing additional supports to achieve greater independence. Visual strips of the required steps can be provided to serve as a visual prompt, thereby removing the need for adult-delivered prompts. Adding visual structure by color coding the bottom of the pad and the center of the underwear to show pad location also has been helpful. A visual schedule can be used to cue the student on when and how often the pad should be changed. Where possible, pad change times should fit into the normal break schedule of the student’s day. Adding technology in the form of a vibrating watch can be another helpful approach for cuing students to change the pad at set times. To encourage independence and self-management of menstrual care, the student can be taught how to use a calendar and/or an app to plan when her period is due.

Effective instruction needs to plan for generalization of the skills involved in menstrual care. Once basic steps are mastered, instruction should plan for variations across material and settings. An example of variation in material would be use of different types of pads, such as those with and without wings, light flow pads, etc. Variation in setting would include skills needed to dispose of the soiled pad in public restrooms, as well as in school and at home.

Desensitization

One aspect of menstrual care not addressed by research is the refusal of some girls to wear sanitary pads due to sensory sensitivities. In such cases, a desensitization approach can be effective in order to gradually expose the student to wearing the pad. Having the student wear increasingly larger or thicker sections of pads over a period of time can increase tolerance to the sensation of the pad. Begin with a very small, thin section of the pad and gradually increase size and thickness as the student’s tolerance improves.

In summary, preparing girls for independent menstrual care requires that they achieve both knowledge and skill acquisition. Menstrual care requires new skills in a private body area, thus requiring enhanced planning and sensitivity for instruction. The generally accepted practice is to begin this preparation prior to the onset of menstruation. The timing of instruction onset can be a joint decision between parents and professionals, with parents giving guidance based upon signs of physical maturation. For a small minority of students, it may be felt that providing early instruction may heighten anxiety and the tendency to fixate. In such cases, instruction may be delayed until the onset of menstruation. While greater research is needed on the topic, current evidence and experience supports the use of multifaceted, evidence-based approaches. AHRC NYC schools have found the use of Social Stories, ABA instructional strategies and desensitization programs to be effective in helping students to increase menstrual care knowledge and skills.

Mary Donahue is the Vice President for Behavior Support Strategies for AHRC New York City. She is a licensed psychologist and licensed behavior analyst, specializing in providing evidence-based interventions for children and adults with challenging behavior. Mary is a professor in the School of Education at St. John’s University.

Lisa Barzotto is a certified school psychologist and board-certified behavior analyst (BCBA) who works for the New York City Department of Education. Previously, she worked for 10 years as the school psychologist of AHRC New York City’s Brooklyn Blue Feather Elementary School. Lisa’s interests include behavioral interventions in Autism Spectrum Disorders (early identification and intervention, parent and teacher training, coping strategies for managing anxiety, and social skills interventions) as well as dissemination of ‘best practices’ in ASD interventions in schools and the community.

For more information, visit www.ahrcnyc.org.

References

Ballan, M., & Freyer, M. (2017). Autism Spectrum Disorder, Adolescence, and Sexuality Education: Suggested Interventions for Mental Health Professionals. Sexuality and Disability, 35, 261-273.

Esroy, G., Tekin-Iftar, E., & Kircaali-Iftar, G. (2009). Effects of Antecedent Prompt and Test Procedure on Teaching Simulated Menstrual Care Skills to Females with Developmental Disabilities. Education and Training in Developmental Disabilities, 44, 54-66.

Klett, L., & Turan, Y. (2012). Generalized Effects of Social Stories with Task Analysis for Teaching Menstrual Care to Three Young Girls with Autism. Sexuality and Disability, 30, 319-336.

Veazey, S., Valentino, A., Low, A., McElroy, A., & LeBlanc, L. (2016). Teaching Feminine Hygiene Skills to Young Females with Autism Spectrum Disorder and Intellectual Disability. Behavior Analysis Practice, 9, 184-189.

Tags: , , , , , , , , ,
Posted in Girls and Women, Spring 2020 Issue | No Comments »