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October–DecemberJuly–September 2017 2012 Inside this issue Sexuality and sensory processing ...... 5 Parent2Parent ...... 6–7 Typical meds and the . . 8–9 and ASD Inside Autism Delaware . . . 10–11 How to explain Moving toward and Sun contributor acceptance Catherine Dukes, PhD, relationships Nearly every human being— is the vice president Human sexuality is part of including people with every human being. It is of education & autism spectrum disorder part of us at birth and is training at Planned (ASD)—craves romantic and sexual relationships. But with us until the day we Parenthood of pass on. “[h]istorically, individuals Delaware’s Sexuality with disabilities have been As parents, caregivers, and Education Training denied rights to sexuality.”1 educators of individuals Institute . with autism spectrum Why? Fears and stereotypes disorder (ASD), many of us often impede individuals may be placed in the role with disabilities. Stereotypes of sex educator or even relationship include the belief that Our mission facilitator, but explaining sex and people with ASD are childlike, nonsexual, relationships to someone on the over-sexual, unable to understand, To help people and spectrum can feel very complicated. unable to give consent, uninterested in sexual relationships, unable to develop families affected So, start simple: Explain the basics, and name the body parts using or maintain a sexual or romantic by autism spectrum correct terminology instead of slang relationship, or not able to get married or have children. disorder (ASD) terms. Start teaching when your child is very As a result, “[i]ndividual rights to young. If your child is older, worry sexuality, which is essential to human not. True, it’s never too early to start, health and well-being, have been denied. but it’s never too late to start if you This loss has negatively affected people haven’t already begun. Whenever with IDD [intellectual and developmental you start, this will be the beginning disabilities] in , friendships, of a lifetime of conversations. self-esteem, body image and awareness, emotional growth, and social behavior. Use the correct names for all the People with [IDD] frequently lack access to body parts. Don’t skip silently past appropriate in schools and the child’s private parts. If you don’t other settings. At the same time, some know the correct names of the individuals may engage in sexual activity private parts, start learning them. as a result of poor options, manipulation, Check out plannedparenthood.org, loneliness or physical force rather than as sexetc.org, or some of the books an expression of their sexuality.”2,3 mentioned in this article or listed in TM the Resources box on page 4. To move away from the fears and stereotypes and toward acceptance, Continued on p . 3 Continued on p . 4 Ask for help; try to help others Autism Delaware™ In this issue of The Sun, you will find swamped by the information that addresses a few growing numbers Newark aspects of human sexuality as well as and needs of the 924 Old Harmony Rd. some resources that may be helpful autism community. Suite 201, Newark DE 19713 to individuals on the autism spectrum As a result, the Phone: 302.224.6020 and their families. As in each issue of lifeblood and Autism Delaware’s quarterly newsletter, essence of the Dover the usefulness of the information organization rest on Pete Bradley c/o Dover Downs and resources will depend on the volunteers. Autism Board President 1131 North Dupont Hwy., Dover DE 19901 individual’s needs. Delaware volunteers Call for on-site appointment: are a great help 302.224.6020 or 302.644.3410 Admittedly, “human sexuality” can be to the people who help families a sensitive subject. The staff at Autism Lewes affected by ASD as well as to those Delaware is willing and able to guide 17517 Nassau Commons Blvd. families themselves. Volunteers are you through your concerns. Don’t Unit 1, Lewes DE 19958 responsible for the smooth operation hesitate to give Autism Delaware a call. Phone: 302.644.3410 of extensive administrative efforts, The phone numbers are listed in the advocacy, communications, programs, Email box at left. [email protected] and fundraising. Their spectrum of As president of Autism Delaware’s assistance is crucial. Website board of directors, I am awed by When your personal situation allows, autismdelaware.org the depth and breadth of programs please become an Autism Delaware and services that our organization volunteer. Share your unique talents, Family support provides to individuals on the and help make a difference in our Kent and Sussex Counties spectrum and their families across world and yours. (302) 644-3410 the state. Our mission sounds simple: New Castle County helping people and families affected In turn, don’t be afraid to ask for (302) 224-6020 by autism spectrum disorder (ASD). help when you need it. Sometimes, But accomplishing this goal means we hesitate to ask for help because Board officers addressing the range of symptoms we don’t want to feel indebted or be experienced by people on the spectrum an inconvenience to others, but this President as well as the range of traits that attitude will only isolate you. Pete Bradley defines each individual. Because we at Please know that the people you reach [email protected] Autism Delaware want all individuals out to will feel personally fulfilled Vice president on the spectrum to live a purposeful by the process. I’ve learned that Marie-Anne Aghazadian life, our work is definitely cut out this process can also be amazingly [email protected] for us. cathartic. So, my motto is now “Ask Secretary While Autism Delaware maintains for help; try to help others.” Artie Kempner an excellent professional staff, Use it as your own motto if you like. [email protected] we are still a nonprofit. Each staff member is responsible for at least one Treasurer Pete Bradley Jeff Flanders organizational department and can be [email protected]

The Sun A service of Autism Delaware A publication of Autism Delaware

Editorial committee Katina Demetriou, director [email protected] Carla Koss TM Ann Athas Cory Gilden Heidi Mizell Bus: 302.224.6020 Ext. 202 Cell: 302.824.2252 Liz Carlisle Gail Hecky Jen Nardo Melissa Martin, assistant director Dafne Carnright [email protected] Bus: 302.644.3410 Cell: 302.824.9710

Autism Delaware™, POW&R™, Productive Opportunities for Kim Rosebaum, vocational administrative assistant Work & Recreation™, and the Autism Delaware puzzle-piece [email protected] logo are trademarks of Autism Delaware Inc . Bus: 302.224.6020 Ext. 214

2 | July–September 2017 How to explain sex Continued from p . 1 If getting started with these terms feels awkward, practice For toddlers and children, a critical message is “Your body saying them out loud when alone in your home or car. It’s belongs to you. Sometimes, parents and doctors may have to important to use touch your private parts but only to help keep you clean or

these terms without for medical reasons.” How common shame. Two critical It’s important to talk about “secret touching” or other terms is ? reasons are sexual that may signal sexual abuse. Tell your child that “a secret abuse prevention touch” is never okay, and he or she should tell a trusted adult The Disability and Abuse Proj- and being able if anyone engages in secret touching—and keep telling until ect 2012 National Survey on to use common, someone intervenes. Abuse of People with Disabilities medically correct included about 7,300 individuals terms when talking Teaching sexuality and reproduction with disabilities, family mem- with doctors. Young In general, it is okay and makes sense to teach children what bers, caregivers, and responders people need to human sexuality and reproduction are. In fact, in 2008, to abuse . know that their The Arc and the American Association of Intellectual and Of the responders with any dis- private parts have Developmental Disabilities offered a critical and relevant ability, 70 percent said they had names, that their source of information and policy-making ideas around human been victims of abuse . private parts are sexuality and people with intellectual and developmental Of responders with a develop- theirs, that they disabilities (IDD), such as autism. For more about this paper, see the article on page 1 entitled mental disability (such as au- can talk about “Moving toward acceptance.” tism), 34 percent reported some their private parts, Note: Parents type of sexual abuse . that they can ask For teaching tools, I highly should review about their private In a separate 2012 study pub- recommend these award-winning Harris’s books lished in The Lancet, children parts without being sex-education books by Robie H. thoroughly before with developmental disabilities shamed, and that Harris: sharing them with and mental-health diagnoses they have control • It’s Not the Stork (ages 4+) were reported as 4 .6 times more over who touches • It’s So Amazing (ages 7+) their children . likely to be sexually abused than their private parts. • It’s Perfectly Normal (ages 10+) Make sure you children without disabilities . understand the As a bonus, parents and content, and might also tell their While masturbation is normal at Sexual Abuse of Individuals with be prepared to children with ASD any age in human beings, Developmental Disabilities, Brief share your values One: Contributing Factors (Dis- how amazing their brings an increase in hormones ability Rights Ohio, Columbus, whole bodies are, and sexual interest. Where the alongside the 2015): 4 . including their parents of neurotypical kids may medically accurate genitals. think they can be -off in information found providing guidance around sex and in these books . Let me get you started with a few basic terms: relationships, the parents of teens • —Everyone’s got them. with ASD need to supply extra • Vulva—For or -bodied individuals, the vulva is instruction and guidance. You may want to put your head in the external genitalia you can see between a ’s legs. the sand, but don’t! Comprehensive sex education is needed The vulva includes the outer (labia majora), inner lips for many reasons. In addition to minimizing the risk of abuse, (labia minora), , urethral opening, and vaginal victimization, and perpetration, education can provide young opening. people with understanding and skill-building around healthy • A is the “tube” from the vulva to the cervix and relationships, consent, and social skills, which can enhance uterus. Calling all of a girl’s external genitalia “her vagina” and benefit an individual’s romantic life and sexual health. is like calling your entire your . This discussion may be difficult for you, so instead of • and scrotum—For boys or male-bodied individuals, scheduling time for “the talk,” consider finding teachable the penis is generally well-known. The scrotum is the sack moments. These moments can often be found during car under the penis that holds the . rides, listening to music and lyrics, or watching TV shows. Parents can ask their children “What do you think about...” Teaching the real meaning of “private parts” or other questions when sexual or romantic scenarios come The developmental age of a child with ASD can differ greatly up. These ongoing conversations can then open the door to from his or her chronological age. Further, family values sharing values, teaching medically accurate information, and combined with developmental age can lead to great diversity dispelling common myths. around when and what is taught in the way of sex education. For more information, see the Resources box on page 4.

July–SeptemberJuly–September 20172017 || 33 Moving toward acceptance Continued from p . 1

The Arc authored a own cultural, religious and moral values and of social position paper in 2008 with responsibility; the American Association • individualized education and information to encourage of Intellectual and informed decision-making, including education about Developmental Disabilities. such issues as reproduction, and family life, The paper offered a critical abstinence, safe sexual practices, , and relevant source of sexual abuse, and sexually transmitted diseases; and information and policy- making ideas around • protection from and from physical, human sexuality and people sexual, and emotional abuse. with [IDD], such as autism: “With respect to sexuality, individuals have a responsibility to

“Every person has the consider the values, rights, and feelings of others. right to exercise choices regarding sexual expression and “With respect to the potential for having and raising children, social relationships. The presence of an intellectual or individuals with intellectual or developmental disabilities have developmental disability, regardless of severity, does not, in the right to itself, justify loss of rights related to sexuality. • education and information about having and raising “All people have the right within interpersonal relationships children that is individualized to reflect each person’s to unique ability to understand; • develop friendships and emotional and sexual relation- • make their own decisions related to having and raising ships where they can love and be loved, and begin and children with supports as necessary; end a relationship as they choose; • make their own decisions related to using • dignity and respect; and methods within the context of their personal or religious beliefs; • privacy, confidentiality, and freedom of association. • have control over their own bodies; and “With respect to sexuality, individuals have a right to • be protected from sterilization solely because • sexual expression and education, reflective of their of their disability.”2,3

1 Hartman, Davida . Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders (Jessica Kingsley Publishers, 2013): 16 . 2 http://www.thearc.org/who-we-are/position-statements/life-in-the-community/sexuality 3 aaidd .org (website for the American Association on Intellectual and Developmental Disabilities/News & Policy/Policy/Position Statements/Sexuality)

Planned Parenthood of Delaware’s education de- Resources partment is now offering • Planned Parenthood • WebMD • individual education and group sexuality & https://www .planned www .webmd .com/sex/features/ relationship education parenthood org. when-to-talk-to-your-child-about- for people with dis- • Planned Parenthood of Delaware sex#1 abilities, https://www .plannedparenthood . • Boyfriends and Girlfriends: • parent workshops, and org/Planned-parenthood-delaware • professional trainings on A Guide to Dating for People sexuality and disability . Education Department with Disabilities (2015), (302) 224-8099, ext . 5 by Terri Couwenhoven For a free education • Sex, Etc . • Sexuality and Relationship session, workshop, or (comprehensive sex-education professional training, Education for Children and information to improve teen Adolescents with Autism call (302) 224-8099, ext . 5, sexual health) or send an email to Spectrum Disorders (2013), iweber@ppde org. . https://sexetc .org by Davida Hartman

4 | July–September 2017 Sexuality and sensory processing Sexuality shapes the way we think about ourselves and others. Sun contributor Sexual expression may occur in the context of an established Lauren Janusz, healthy relationship or with one’s own self. Healthy relationships are based on permission, privacy, protection, and pleasure. MOT, OTR/L, HPCS, is an occupa- tional therapist People with autism spectrum disor- tive may be deep pres- with OPT Ther- der (ASD) are sexual beings. But what sure because this affects if sexual intimacy is uncomfortable? the proprioceptors (or apy Services in Sensory-processing issues are common sensors) in the muscles Delaware . in people with ASD, and these issues and . These sensors may affect sexual exploration and provide information sexual expression. about body awareness,

“Sensory processing” refers to how your body receives infor- which facilitates organi- mation from your senses and how it responds to this informa- zation of the body’s sensory systems. If applying deep pres- tion physically and emotionally. For example, a back sure is pleasing to you or your partner, it may be beneficial to may feel good to one person: He or she processes the mas- use initially and during sexual intimacy. sage and responds by relaxing. But another person may pull Vibration is another way to access the proprioceptors. away from the massage: This individual processes the mas- Vibrators come in a variety of shapes and sizes, and many sage as irritating. come with adjustable speed. Try vibration on your hands or If you or your partner are sensitive to factors in the environ- before exploring other areas of your body to make ment, remove them or control them for a more pleasurable sure the feeling is acceptable and desirable for you or for experience. Some environmental factors to consider when ex- your partner. ploring sexuality include (but are not limited to) the following: Mapping erogenous zones is another way to explore sexual • aromas intimacy. An is an area of the body that has • air temperature heightened sensitivity and may be any area of the body, not • body temperature only genitalia. If one area of the body is uncomfortably sensi- • body moisture tive to touch, another area may be more receptive to intimate • ambient lighting touch. Stimulation of an erogenous zone may generate a • colors or hues sexual response. • body exposure Within all consensual relationships, open communication, • bedding time, and patience are key to developing healthy sexual • background noise expression. If you or your partner feel that sensory processing Tactile defensiveness (also known as hypersensitivity to touch) affects your sexual expression negatively, you may bene- may create a barrier to . To someone with fit from treatment or a consultation with a sex-positive tactile defensiveness, light touch may feel painful. An alterna- occupational therapist.

References Holman, John Scott . “Autistics Do It Better” (Jan . 6, 2012) . autism after 16 (http://www.autismafter16.com/ article/01-06-2012/autistics-do-it-better). A handbook for and by autistic people: relationships & sexuality (2013). Elesia Ashkenazy and Melanie Yergeau, editors . Autism NOW (http://autismnow.org/wp-content/uploads/2013/02/ Relationships-and-Sexuality-Tool.pdf) and Autistic Self Advocacy Network . MacRae, Nancy, MS, OTR/L, FAOTA . Fact sheet: Sexuality and the Role of Occupational Therapy (2013). The American Occupational Therapy Association, Inc ., Bethesda MD (https://www.aota.org/About-Occupational-Therapy/Professionals/RDP/Sexuality.aspx).

Want information about occupational therapists in your area? Call Autism Delaware: In northern Delaware, dial (302) 224-6020, and ask to speak to the resource coordinator . In southern Delaware, dial (302) 644-3410, and ask for the family service coordinator .

July–September 2017 | 5 Written by parents for parents Talk to your child early and often about human sexuality Nobody wakes up excited to talk to their kids about private Most experts agree parts, reproduction, and sexual abuse. But unless you want that you shouldn’t them learning about their changing bodies and emerging wait for your kid to ask sexuality from a misinformed classmate or a sitcom, start a question, because talking to your kids early—and keep talking to them! some kids may never Prepare yourself by consulting with your partner or spouse bring it up, or they may about how to approach the topic and arming yourself with interpret your silence some books and advice from professionals. to mean the subject is taboo. (For the record, I am not a professional. And just so you know: You are not alone; this topic terrifies me, too. Even though my kid Especially because my kid has autism and had a very limited is only eight years old vocabulary until he was about five years old.) now, my husband and I have started talking to So you know why talking early and often is important, him. We tell him that here’s a terrifying statistic that came out of a 2000 study: body parts covered by Children with disabilities are 3.14 times more likely to be bathing suits should be sexually abused than children without disabilities (Sullivan, P. kept private, and it’s M., and Knutson, J. F. “Maltreatment and disabilities: A population-based not polite to play with epidemiological study.” Child Abuse & Neglect, 24(10): 1257–1273). or explore your private Scary statistics like this prompted me to talk to my son about parts around other Casey Gilden his body because I knew he was more vulnerable to sexual people. When my son abuse. I needed him to be able to tell good touches from bad gets out of the tub with touches, and he needed to know he could talk to me without a little , we explain that sometimes his penis is big feeling shame. and sometimes it’s small. And when he thinks it’s hilarious to Most professionals say the information you share with your make his butt “talk and dance,” we remind him that it’s not children should be honest, factual (using real names for body polite to shake his private parts at people. parts), and age appropriate. Of course, the answer to the Just because we’ve talked to our son a few times while he’s question “Where do babies young doesn’t mean our work is done. I know it’s important come from” will be different to talk often with kids about their bodies, human sexuality, Cory recommends for a five year old than for a and sex abuse because our children are constantly growing A Teaching Tale: My 15 year old. Having a child and changing. And they are able to understand more. with an intellectual disability Body Belongs to Me Kids become adults, and we know the questions and changes like autism makes the are coming. It’s better to be prepared than leave the subject (for ages 2–6), which timing for these discussions to their own imaginations. Luckily, there are a ton of books is available from even harder, since a child and internet resources out there to help parents get through with autism could be 12 the Channing Bete the uncomfortable moments. With a little research on your years old but have the Company at www . part, you’ll feel more confident when talking to your child comprehension skills of a with autism about human sexuality. channing-bete .com . 6 year old. —Cory Gilden

Symbols designed to help your child speak up srcp.org Designed for use only with Boardmaker Studio software, PCS The online site Sexual- Classic: Communicating About Sexuality, by Mayer-Johnson, ity Resource Center for LLC, offers 408 symbols to expand the expression of sexuality . Parents includes tools, For more information, visit http://www .spectronics .com .au/ tips, and tricks for product/pcs-classic-communicating-about-sexuality-studio- teaching children about edition . human sexuality .

6 | July–September 2017 Written by parents for parents Growing into a sexual being My son, Jake, who lives with autism, is almost 19 years old. today will be different next year, When he reached a certain age, I was on the lookout for so keep the conversation going. signs of puberty. Not knowing when he’d actually develop, With Jake, I have never been I started to prepare him for what was to come: certain that he would understand “You are going to grow on your body,” I said and then the “sex talk.” I don’t expect gave some specifics. that Jake will ever be in a typical “No,” Jake replied. relationship, but he needs to be aware so that no one can take advantage of him. “One day,” I continued determinedly, “you will shave your face like does.” For help, I recommend reaching out to other parents going through the same stage or those whose children are a little “No,” Jake asserted. ahead. The insight and knowledge will be invaluable as you

I ended up taking Jake to the same pediatric urologist who navigate with your child through puberty. saw him as a newborn. The doctor assured me and my I’ve noticed that, as my son was developing, I got used to the husband that puberty was, indeed, on the way. slow progress. As a parent, this slowness was a comfort and As with all new processes for Jake, the beginning involves made me forget that puberty was coming, no matter what lots of protest; then, the protest fades as he gets comfortable age Jake may be developmentally. with the new process. Fast forward a couple of years, and Recently, I talked to parents who have kids with special needs Jake notices the new hair growth I warned him about. He did about how they approached the topic of masturbation. not seem surprised or angered—only matter of fact. Luckily, Although the act is natural, some teens need guidance. In grows slowly, so Jake had time to recognize that it fact, some boys have behavioral outbursts that can be aided was there to stay. by learning how to masturbate. With direction from your Jake has since graduated to partial face shaving with his Dad. child’s doctor or other professional in his life, you can get the My husband started the process by shaving in front of Jake information you need. and encouraging him to try. The teaching has been working One family I spoke to had a security camera in the son’s well, but Jake has trouble holding the razor at the correct room from the time he was small because of the severity of angle. There are many razors on the market, so if we need to his seizures. With the other monitor in the kitchen, it soon make a change, we will. became common practice to turn the monitor off when the use was introduced to Jake as puberty began. To boy needed privacy. remind him, I used a CD-ROM with PECS [picture exchange This conversation brought up the idea of teaching the communication system] from Pyramid in Newark. Jake’s appropriate location for masturbation: Do you limit it to the underarm hair serves as a target for where to rub the bedroom? Or do you encourage using the bathroom? The deodorant, and he likes a verbal prompt. The picture has more experienced parents shot down the bathroom. Why? been added to the list of things for him to do each day. Now, Because our guys use public bathrooms in the community. If the PECs pictures serve as a reminder for Jake: If it’s on the one bathroom is an acceptable place to masturbate, then any schedule, he has to do it. (No stinky teenage boy here!) bathroom would seem appropriate. To avoid any unintended For parents, the most difficult part of their children’s puberty displays, these parents advised the use of the bedroom. This is the sexuality aspect: How much do you tell them? And how reasoning makes sense to me, but every family has to find do you tell them? what works for them. Describing the mechanics of sex needs tailoring to each Wishing us all good luck with each and every situation! individual’s level of understanding. What a child can handle —Jen Nardo

Jen recommends these books written by Kate E . Reynolds: • What’s Happening to Tom? A book about puberty for boys and young men with autism and related conditions (Sexuality and Safety with Tom and Ellie) (First edition) . Illustrated by Jonathon Powell . • What’s Happening to Ellie? A book about puberty for girls and young women with autism and related conditions (Sexuality and Safety with Tom and Ellie) (First edition) . Illustrated by Jonathon Powell . • Sexuality and Severe Autism: A Practical Guide for Parents, Caregivers and Health Educators . Jessica Kingsley Publishers (2014) .

July–September 2017 | 7 Typical meds taken by people with autism and how they affect the libido People with autism spectrum disorder (ASD) are “First named by Sigmund sometimes prescribed medications to help with a range of coexisting conditions. However, Freud, the libido is . . “[m]any medications can be a cause of decreased an individual’s general or loss of libido,” notes Pharmacy Times (a full- life energy . The libido service pharmacy media resource). “Loss of libido is was initially thought inherently connected with all other aspects of sexual to be purely , although it cannot be assumed that all medications that list sexual dysfunction as an include specifically loss of libido. Patients can have dysfunction energy however this (anorgasmia) or without loss of libido, and some medications can affect understanding was just libido, just erectile function, or just orgasm function, whereas others can affect any broadened to include combination” (http://www.pharmacytimes.com/publications/issue/2010/june2010/lossoflibido-0610). expressions of love, The following medications, typically taken by people with ASD, were listed in Child-Autism- pleasure, and self- Parent-Cafe.Com (www.child-autism-parent-cafe.com/autism-medication.html) and Drugs.com (https:// preservation [sic]” (http:// www.drugs.com/condition/autism.html). Each med listed here and on page 9 includes the brand psychologydictionary .org/libido) . name (and the generic name). Not all side effects are noted—only those that may affect an individual’s sexual function. This information is courtesy of Drugs.com.

Adderall (amphetamine/dextroamphetamine) Effexor (venlafaxine hydrochloride) continued Major side effect–incidence not known: large, hive-like More common minor side effect: decrease in swelling on the sex organs or other areas or ability Minor side effects–incidence not known: decreased Geodon (ziprasidone hydrochloride) interest in ; inability to have or keep an Rare major side effect: persistent, painful erection erection; loss in sexual ability, desire, drive, or performance Haldol (haloperidol lactate) Anafranil (clomipramine) More common minor side effects: changes in menstrual Common side effect: ejaculatory disorder period; swelling or pain in the breasts (in ); unusual Less common major side effects: ; secretion of milk pain during sexual intercourse Less common minor side effect: decreased sexual ability More common minor side effects: change in interest in sexual intercourse; inability to have or keep an erection; Luvox (fluvoxamine maleate) increased interest in sexual intercourse Rare major side effects: menstrual changes; unusual Less common minor side effects: absent, missed, or secretion of milk (in females) irregular menstrual periods; More common minor side effect: change in sexual performance or desire Bumex (bumetanide) Rare minor side effects: decreased interest in sexual Namenda (memantine hydrochloride) intercourse; inability to have or keep an erection; loss Minor side effects–incidence not known: decreased in sexual ability, desire, drive, or performance; interest in sexual intercourse; inability to have or keep an tenderness; shorter than usual time to of semen erection; loss in sexual ability, desire, drive, or performance Clozaril (clozapine) Paxil (paroxetine hydrochloride) Rare major side effect: decreased sexual ability Common side effects: ejaculatory disorder; erectile Less common minor side effect: change or problem with dysfunction; male genital disease; decreased libido; discharge of semen delayed ejaculation Minor side effect–incidence not known: painful or Other side effects: female genital tract disease; impotence; prolonged erection of the penis orgasm disturbance Major side effects–incidence not known: painful or Dexedrine (dextroamphetamine) prolonged erection of the penis; swelling of the breasts; Minor side effects–incidence not known: decreased unexpected or excess milk flow from the breasts interest in sexual intercourse; inability to have or keep an More common minor side effects: decreased sexual ability erection; loss in sexual ability, desire, drive, or performance or desire; sexual problems, especially ejaculatory disturbances Effexor (venlafaxine hydrochloride) Less common minor side effects: itching of the vagina or Rare major side effect: menstrual changes genital area; menstrual changes; pain during sexual

8 | July–September 2017 ead the packaging that comes with a medication’s prescription . Look for the possible side effects so you can look for the possible changes in your child . The following terms refer to the severity of a Rpossible side effect: Major side effect—Talk to your doctor immediately . Minor side effect—The side effect may disappear as the body gets used to the medication, but check with your healthcare professional if the side effect continues or if you are concerned . Incidence not known—This term means the side effect was acknowledged but not counted . “These are usually the ones where a few people have reported it, but nothing was found in controlled studies” (https://www .drugs com/answers/meaning-incidence-877250. .html) .

Paxil (paroxetine hydrochloride) continued Silenor (doxepin hydrochloride) continued intercourse; thick, white vaginal discharge with no odor or or excess milk flow from breasts a mild odor Strattera (atomoxetine hydrochloride) Prozac (fluoxetine hydrochloride) Side effects: dysmenorrhea (painful ); erectile Common side effect: decreased libido dysfunction; ejaculatory disorder; ejaculation failure Major side effect–incidence not known: large, hive-like Less common major side effect: large, hive-like swelling swelling on the sex organs or other areas on the sex organs or other areas Less common minor side effects: breast enlargement or Rare major side effect: painful, prolonged erection of pain; menstrual pain; unusual secretion of milk (in females) the penis Minor side effects–incidence not known: painful or Major side effect–incidence not known: pelvic pain prolonged of the penis; swelling of the breasts in males or breast soreness in both females and males; unusual More common minor side effects: bleeding between milk production periods; change in amount of bleeding, in pattern of monthly Risperdal (risperidone) periods; decreased interest in sexual intercourse; inability to Rare major side effect: prolonged, painful, inappropriate have or keep an erection; loss in sexual ability, desire, drive, erection of the penis or performance; unusual stopping of menstrual bleeding Less common minor side effects: absent, missed, or Less common minor side effects: abnormal orgasm; irregular menstrual periods; breast swelling or soreness; change or problem with discharge of semen; groin pain; decreased interest in sexual intercourse; inability to have swollen, tender or keep an erection; loss in sexual ability, desire, drive, or Tofranil (imipramine hydrochloride) performance; stopping of menstrual bleeding; unusual breast Minor side effects–incidence not known: decreased milk production interest or ability in sexual intercourse; enlargement of the Serzone (nefazodone hydrochloride) breast; increase in sexual ability, desire, drive, or performance; Less common moderate side effects: itching of the vagina swelling of the testicles; swelling of the breasts or breast or genital area; pain during sexual intercourse; thick, white soreness in both females and males; unexpected or excess vaginal discharge with no odor or a mild odor milk flow from the breasts Rare moderate side effects: change in sexual desire or Zoloft (sertraline hydrochloride) performance; menstrual changes; pelvic pain; prolonged, Common side effects: decreased libido; delayed painful, inappropriate penile erection ejaculation; ejaculation failure Moderate side effect–incidence not known: large, hive- More common major side effects: decreased sexual desire like swelling on the sex organs or other areas or ability; failure to discharge semen (in men) Less common minor side effect: breast pain Less common or rare major side effects: breast Minor side effects–incidence not known: unexpected tenderness or enlargement; unusual secretion of milk or excess milk flow from breasts; swelling of the breasts or (in females) breast soreness in males Major side effect–incidence not known: large, hive-like Silenor (doxepin hydrochloride) swelling on the sex organs or other areas Minor side effects–incidence not known: decreased Minor side effects–incidence not known: swelling of the interest in sexual intercourse; enlargement of the breasts; breasts (in women); unusual secretion of milk (in women) inability to have or keep an erection; increase in sexual Zyprexa (olanzapine) ability, desire, drive, or performance; increased interest in Less common major side effects: itching of the vagina sexual intercourse; loss in sexual ability, desire, drive, or or genital area; pain during sexual intercourse; thick, white performance; swelling of the breasts or breast soreness in vaginal discharge with no odor or a mild odor both females and males; swelling of the testicles; unexpected Less common minor side effect: heavy menstrual bleeding

July–September 2017 | 9 ™ Walking the walk Almost Family support expanded 3,000 peo- Autism Delaware has recently expanded its pro- ple “walked gramming options for Delaware families the walk” affected by autism spectrum disorder (ASD) for autism thanks to state funding through the Delaware this year by Network for Excellence in Autism (DNEA). Estab- helping to lished by the Delaware legislature in 2016, the fundraise for DNEA is a multi-agency collaborative network Autism Dela- led by the University of Delaware’s Center for ware’s criti- Disabilities Studies. The goal is to increase the cally needed available training surrounding ASD. supports and Autism Delaware’s expanded family support services. The first leg of the statewide event services are organized around the theme “Reach was April 1 in Cape Henlopen State Park; out before you burn out.” The program provides the second, April 8 in Fox Point State Park. a year-long calendar of available parent training and accessibility through In addition to personal fundraising, gen- Facebook Live, plus a new collaboration with the First State’s education pro- erous donations from businesses across gram, the Delaware Autism Program (DAP). Called Autism 101, it addresses Delaware also contributed to the effort. a range of needs noticed over the years by DAP and Autism Delaware staff. Autism Delaware gratefully acknowledges “Through this program,” explains Autism Delaware family support program champion walk sponsors Swift Pools as manager Annalisa Ekbladh, “we can train families with children who are well as partner sponsors Hertrich Toyota, newly diagnosed with ASD. By ‘training,’ we mean help in understanding Highmark Blue Cross Blue Shield, the Freeh what autism is, working with your child who has ASD, and finding resources Group, Bath Fitter, the Wawa Foundation, in the community as well as other important components.” and Tybout, Redfearn, and Pell. The calendar of available parent training includes professional speakers with Altogether, more than $180,000 was backgrounds specific to ASD issues. “The workshops take place in Autism raised. “Fundraising events, such as the Delaware’s Newark and Lewes offices,” notes Ekbladh, “and air simultane- Walk for Autism, help provide the income ously on Facebook Live so that busy parents and caregivers have easy acces- needed to make critical programs a reality sibility to the information. and bring our community together,” says Autism Delaware executive director Teresa “Our workshops on Facebook Live have been incredibly successful so far,” Avery. “We offer family support, clinical adds Ekbladh. “Because Facebook Live is so much more interactive than services, adult employment, advocacy, and webinars, families can ask questions and get answers in real time. The work- awareness. There’s a growing need across shops only began in April, and the first one was viewed 943 times. And the the state—and we need to meet it!” second was viewed 1,300 times in the first two days! To the 140 volunteers who worked the “An unintended benefit of this format,” continues Ekbladh, “is the parent Walk for Autism in Lewes or Wilmington: connections that have been created. In this format, parents readily share You ensured their experiences and support each other, all in real time.” that more Also with the state funding through the DNEA, two new family navigators of the raised are being added to the Autism Delaware staff. Both navigators are bilingual, funds can go so their goal is to provide more outreach to Delaware’s Spanish-speaking where they’re community as well as greater access to families affected by ASD. needed. Finally, DNEA funding provided the mechanism for a collaborative effort with Thank you! autism agencies, such as Autism Delaware, DAP, Nemours/Alfred I. duPont Hospital for Children, La Red Health Center, the University of Delaware’s Center for Disabilities Studies, and Delaware Family Voices. The goal is to create a stronger community by addressing any overlap and gaps in supports and services. “We all see families in difficult contexts,” says Ekbladh. “By collaborating with each other, we can develop a conduit to help all families in need.” For more information, visit autismdelaware.org. Or call Annalisa Ekbladh at (302) 224-6020, ext. 218, or email her at [email protected].

10 | July–September 2017 ™

July–September 2017 Autism Delaware programs For an up- July August continued to-date list 1—Sensory friendly movie: Despicable Me 3. Carmike Cin- TBD. Westown Movies. 150 Commerce of Autism emas in the Dover Mall. 1365 North Dupont Hwy. 10:00AM. Dr. Middletown. 10:00AM. Delaware 5, 12, 19, 26—Bowling night. Bowlerama. 3031 New Castle 20—Beach picnic. Cape Henlopen State programs, Av. New Castle. 5:30–7:00PM. Register: Karen.Tuohy@red Park. Pavilion 1. Lewes. 10:00–2:00PM. clay.k12.de.us. Register: Gail Hecky at (302) 644-3410. visit 13 21—Grandparents support group. Autism autism —Grandparents support group. Autism Delaware Lewes Delaware Newark office. 6:30–7:30PM. delaware . office. 9:00–10:00AM. R.S.V.P.: Dafne Carnright or Gail R.S.V.P.: Heidi Mizell at (302) 224-6020. org . Hecky at (302) 644-3410. —Bounce night. Hopping Good Times. 23 Cochran Dr. Cam- September den. 5:30–7:30PM. R.S.V.P.: Gail Hecky at (302) 644-3410. 6, 13, 20, 27—Bowling night. Bowler- 15 ama. 3031 New Castle Av. New Castle. 5:30–7:00PM. Regis- —Sensory friendly movie: TBD. Westown Movies. 150 Com- ter: [email protected]. merce Dr. Middletown. 10:00AM. 9—Sensory friendly roller skating. Christiana Skating Center. —Night at the Blue Rocks. Frawley Stadium. Wilmington. 5:15–7:15PM. Picnic at 6:15–8:15PM. Game at 7:05PM. Register: Kris Grant at (302) 224-6020. 12, 19, 26—Lego. Autism Delaware Newark office. 6:00– 6:45PM and 7:00–8:00PM. Register: Heidi Mizell at (302) 22—Sensory friendly movie: Ferdinand. Carmike Cinemas in 224-6020. the Dover Mall. 1365 North Dupont Hwy. 10:00AM. 13—Parent coffee hour. Panera Bread. Wilmington. 7:00PM. August Register: Heidi Mizell at (302) 224-6020. 2—Parent coffee hour. Hampton Inn. Middletown. 9:30AM. 14 R.S.V.P.: Jennifer Sparks at [email protected]. —Grandparents support group. Autism Delaware Lewes office. 9:00–10:00AM. 2, 9, 16, 23, 30—Bowling R.S.V.P.: Dafne Carnright or night. Bowlerama. 3031 Autism Delaware Junior Golf Gail Hecky at (302) 644- New Castle Av. New Castle. 3410. 5:30–7:00PM. Register: This course is designed for youth (ages 8–29) and —Bounce night. Hopping [email protected]. limited to six participants only . Good Times. 23 Cochran de.us. Dr. Camden. 5:30–7:30PM. For five weeks this fall, your child will learn golf 10 R.S.V.P.: Gail Hecky at (302) techniques as well as personal skills related to golf —Grandparents support 644-3410. course etiquette . group. Autism Delaware 16—Sensory friendly movie: Lewes office. 9:00– Where? Rookery South Golf Club TBD. Westown Movies. 150 10:00AM. R.S.V.P.: Dafne 27052 Broadkill Rd ., Milton DE 19968 Commerce Dr. Middletown. Carnright or Gail Hecky at 10:00AM. (302) 644-3410. When? Mondays or Wednesdays —Bounce night. Hopping 4:30PM or 5:15PM 18—Autism 101. Autism Good Times. 23 Cochran Preregistration is required! Delaware Newark and Lew- Dr. Camden. 5:30–7:30PM. Complete the application available at es offices. 7:00–8:30PM. R.S.V.P.: Gail Hecky at (302) autismdelaware .org, and submit the R.S.V.P.: Heidi Mizell or 644-3410. completed application before August 25 . Annalisa Ekbladh at (302) 224-6020. 19—Sensory friendly movie:

All information provided or published by Autism Delaware™ is for informational purposes only. Reference to any treatment or therapy option or to any program, service, or treatment provider is not an endorsement by Autism Delaware. You should investigate alternatives that may be more appropriate for a specific individual. Autism Delaware assumes no responsibility for the use made of any information published or provided by Autism Delaware.

July–September 2017 | 11 TM Nonprofit Organization U .S . Postage

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Helping People and Families Affected by Autism

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Friday, The Blue Jean Ball has a new September 22 theme—Denim & 7:00–11:00PM Diamonds—and two new co-chairs . Shawn Dougherty, Shawn Dougherty, Esq . Blue Jean Ball Weik, Nitsche & Dougherty Esq ,. and Lauren Denim & Diamonds Fritz-Mariner have presented by Hertrich Toyota roots in southern At Delaware’s first and only award- Delaware and are winning winery, Nassau Valley Vineyards taking time out of 32165 Winery Way, Lewes DE 19958 their hectic sched- ules to make this With music by Delaware’s own year’s autism auc- Love Seed Mama Jump! tion the best ever . Lauren Fritz-Mariner Live and silent auction proceeds benefit Wealth Management Advisor Autism Delaware’s programs and services. Merrill Lynch

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