Asperger’s and sex is the phrase most frequently searched for on this blog. I’ve written a bit on the topic of Asperger's, autism and sex, as well as posted an interview with a Bay Area sex therapist. But I suspect there’s a large group of current and potential readers looking for more information. I think a lot of readers want dating information, but even more are interested in help specifically about sexual relationships. Unfortunately, there’s not a lot published on the topic.
One issue of concern to many adults with Asperger’s and autism is Sensory Processing Disorder, also called Sensory Integration Dysfunction or sensory or tactile defensiveness. And of course, sensory problems could easily impact sexual matters.
Recently, I posted a blog review of the book Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Overstimulating World, by Sharon Heller, Ph.D. (2002, Harper-Collins). The book covers many topics, but it also has some information specifically on the impact of sensory defensiveness on sex.
Sensory integration is not an area where I have any training, but if you’re interested in learning more on this topic, check out the book for some specifics, or talk to an Licensed Occupational Therapist who works with adults.
A lot of people ask me for info on support groups, social groups or discussion groups. Sometimes I can help them, especially if it’s something fairly common, like locating a parent support group for local parents with kids on the spectrum. But it seems like it gets tougher and tougher to find a group as the potential members get older. There are a lot fewer groups for teens or adults, and if the group is for multiple special issues it can really get difficult. That’s why I was pleased to find that GRASP is starting a new online discussion group for teens and adults within the GLBT community.
Please check out the GRASP website for info on their latest support group: the GRASP GLBT Network. GRASP defines this group as a “discussion group for adults and teens who are on the autism spectrum and members of the gay, lesbian, bisexual, transgender, queer, or questioning community.”
Parenting kids with autism and Asperger's can be challenging, and this is especially true for couples who are no longer married. In my last post, I touched on some information regarding divorce rates, which indicated that about 30% of families with autistic children are divorced, and inthe majority of those families, the child is living with only one parent.
It's a concern that so many children are growing up without the support of both parents and that many parents are trying to carry the load on their own. One way to ease the burden of divorce and single parenting on these families could be through the Collaborative Divorce process.
Today I'm interviewing JoAnn Rodrigues, MFT. JoAnn Rodrigues is a licensed Marriage and Family Therapist in San Ramon, California, as well as a Coach and Child Specialist for Collaborative Divorce. You can read more about her work on her website,http://www.joannrodriguesmft.com/.
Patricia Robinson: JoAnn, can you explain Collaborative Divorce?
JoAnn Rodrigues: Collaborative Divorce is an alternative to a traditionally litigated divorce. The process came about as a desire to help families navigate a difficult and often devastating event without adding more trauma. In this non-adversarial approach the couple agrees never to go to court. The family has a team of professionals: two attorneys, two
coaches, a child specialist and a financial specialist who have all been trained to help the family reach a settlement that takes into account the emotional and financial needs of all the family members.
The goals are to improve communication and co-parenting so that the family can reach a lasting settlement that preserves relationships rather than destroying them.
In collaborative practice the control over the process lies with the couple as opposed to the court.
This leads to more creativity and flexibility in all aspects of the settlement including parenting plans. This is especially important for families with special needs children as having that flexibility can greatly benefit their children.
Patricia Robinson: What do you see as some of the advantages to using this process?
JoAnn Rodrigues: The benefits to the family are evidenced in a reduced level of conflict, improved communication, co-parenting skills, and a better adjustment for the children. Since everyone's needs are taken into account no one leaves the process feeling like they got the short end of the stick, which only leads to continued resentment and sabotage. As
therapists we are often faced with the results of a "bad divorce" where the fighting never ends. No one benefits when that happens.
The financial cost when the fighting never ends can be enormous. In the collaborative process the couple has a greater initial output of money (retainers for the team members) but can save money in the long run by actively working in the team meetings to reach lasting agreements.
Patricia Robinson: Can you explain your role in the Collaborative Divorce process?
JoAnn Rodrigues: I have two separate roles in the collaborative process, one as a coach and one as a child specialist. I would act in only one role in each case. In my role as a coach I meet individually and in team meetings with one of the spouses. My task is to help that person identify their needs and goals as well their strengths and concerns to help support them through the process. It is different from therapy because I do not go into depth about their issues but instead help guide them and teach them skills when their issues are getting in the way of helping them achieve their goals. I do the same in the team meetings by monitoring the emotions and helping to keep the process on track. I also assist in developing a parenting plan based on the information received from the child specialist.
As a child specialist I am basically making sure that the child's voice is being heard. I am assessing the child or children's adjustment to the divorce. I am looking at what they need developmentally and what is helping and what is causing distress. I am a neutral person in the process sharing the information I have gained with the parents and the team.
Patricia Robinson: How do couples find a collaborative divorce team?
JoAnn Rodrigues: They can go to our local website, www.collaborativepracticeeastbay.com and click on team members. They can contact any member such as myself and that person will meet with them and make suggestions for the other team members based on their needs. For people reading this outside the Bay Area they can go to the international collaborative website at www.collaborativepractice.com
Patricia Robinson: Thanks JoAnn! I'm sure my readers will find this information helpful.
Do couples with autistic kids get divorced more frequently than other couples? Shockingly high divorce rates are quoted frequently, for example, Jenny McCarthy on Oprah, where she said it’s 90%, or Dr Colleen Allen, of the Henry Ford Center for Autism and Developmental Disabilities, who is quoted online as saying it’s 86%. Even John McCain, in his 2008 statement on autism for the ASA’s rally stated that “divorce rates of parents of children with autism are well above the national averages.” (Autism Advocate, 3rd Edition, 2008, Vol 52, p. 58.) Unfortunately, the data behind these numbers never seems to be included, so it’s hard to know if they are valid.
What is well documented and readily available is Easter Seals’ Living with Autism study. Easter Seals, with Mass Mutual Financial Group, and the Autism Society of America, conducted an interactive Harris poll. They interviewed US residents with children 30 or younger, where the child has either an Autism Spectrum Disorder or no special needs diagnosis at all. A total of 1652 parents of children with autism were polled, and there was a control group of 917 parents who didn’t have children with special needs. Many issues were studied, including detailed listing of parents concerns, such as their adult children’s quality of life and ability to live independently. It’s an online poll, so of course there are questions about biases, such as which families chose to participate in the study. The study focuses heavily on looking at financial planning questions, not surprising regarding the sponsorship. Many of the findings aren’t exactly shocking, such as the fact that parents of the special needs children were highly concerned with their child’s independence and quality of life, and that they struggled financially and had concerns about their children's education.
But, there was one section of the report that looked at divorce statistics. The report states, “Families living with autism are significantly less likely to be divorced than families with children without special needs. Among those parents with children who have Autism Spectrum Disorder and who have been divorced, only one third say their divorce had anything to do with managing the special needs of their children.” (p. 39) And the rate? 30% for families with autistic children, 39% for the control group without special needs.
There’s also some information on these divorced families with children on the autism spectrum. The study found that in about half of the divorced families, one parent had sole custody of the child, and 71% of the time the child lived with the parent full time. Certainly, this can be a stress on the single parent, especially when coupled with the fact that over half of families with ASD reported having little or no support from their extended family.
Interested? You can download a copy of your own at the Easter Seals website.
For many adults, dating and finding a romantic partner are important goals, and this is true for those with Asperger’s and autism as well as those without. But often, those on the autism spectrum may have gotten off to a slower start on dating. The high school social scene, when many neurotypical teens first start dating, can be horribly complex and not open to anyone who doesn’t fit into the popular crowd’s most narrow definition of acceptable behavior. High schoolers on the autism spectrum may be quirky, or dealing with bullies, or just not ready to enter into an activity that is so socially complex. Then, after high school, it can be even more difficult because it seems like the rest of the world is so much more experienced with dating. The older you get without dating, the tougher it may seem to get started. But, the good news is, if you’re wanting to start dating, it’s never too late to begin. Below are some tips for how to start dating, even if you’re no longer anywhere close to high school age.
Of course, the first step in starting to date is to find a date. This is actually probably easier than you might imagine. Remember, you’re looking for a date, not a spouse. So you can settle for a person you enjoy talking to or spending time with, this doesn’t have to be that perfect ‘one’ person. Consider expanding your ideal criteria. Maybe you envision yourself only involved with an extremely attractive, or brilliant, or successful individual. But, if you’re only setting up a date here, you can relax your standards. Many people whom you’d never consider marrying can be lot of fun to talk to on a date. Who knows, you may even change your standards.
Meeting people gets easier all the time. If you struggle in more unstructured settings, like bookstores and coffee shops, it’s fine to go to practical meeting places, things like speed dating or the internet. There, you can be assured that the people you’re meeting are looking to meet others. If you’re inexperienced with dating, it’s probably best to avoid asking out coworkers, neighbors or people you’ll continue to see a lot of after the date. Misread social cues can mean a long term awkwardness with people you have to interact with well after the date.
Of course, safety is key. It you’re an individual who struggles with reading social signals, assume that you might have difficulty in determining if situations are safe. Have your date in a public, well lit place, make sure you bring a phone and a friend knows where you are. Don’t give out your address or too many personal details. Plan in advance about how long the date will be, and then stick to that plan. You don’t want to get carried away with a charming stranger. Finally, and most important, trust your instincts. If something feels off, listen to yourself.
Your first dating experiences are bound to be somewhat awkward. Relax, this doesn’t have to be a lifelong romance. See if you can just think of this date as a way to get more experience with dating. You don’t have to share your lack of dating experience with the person you’re chatting with, just keep it light. Talk about things you have in common, and try to learn general things about your date, things like where they’re from, what they like about the place they’re currently living, interesting hobbies. Also, plan on keeping it short. An afternoon coffee date is a lot less pressure than a full night of dinner and a movie. If it’s easier, consider setting your first date up as an activity, like touring a museum, taking a hike, visiting the beach. These activities can also take a lot of pressure off carrying on a lengthy conversation.
Finally, try to have fun! Dating can be the way to meet a spouse, or find the love of your life. But it can also be a pleasant way to interact with another person, and enjoy a Saturday afternoon.
Puberty and sex can be tough for any parents to discuss with their children, but it's important. And for kids, preteens, and teenagers with autism and Asperger's, sex education is vital. Kids on the autism spectrum may be less socially sophisticated than peers, but their physical development will progress regardless if they, or their parents, are ready to handle the changes. For your child's safety and happiness, parents need to put aside any reservations and start discussing sex!
Today, I'm talking with Sarah Attwood, the author of Making Sense of Sex: A Forthright Guide to Puberty, Sex and Relationships for People with Asperger's Syndrome. (Jessica Kingsley Publishers, 2008) Ms. Attwood has been a sexuality educator in Australia for fifteen years, and has worked extensively with parents and their preteen and teenage children.
Patricia Robinson: Sarah, your book is different than other sex education books because it's specifically written to adolescents with Asperger's Syndrome. How is the information in your book tailored specifically to those on the autistic spectrum? What do you think are the special concerns and issues of teens with autism and Asperger's?
Sarah Attwood:You're quite right, Patricia, that young people on the autism spectrum are going to go through the changes of puberty in exactly the same way as all other people, and for this reason they need exactly the same information as everyone else. However, the nature of autism and Asperger's syndrome means that there are some specific issues which usually aren't addressed in regular puberty books, and that's why Jessica Kingsley asked me to write Making Sense of Sex.
Lots of regular puberty books use contemporary language - 'teen talk', if you like - and while this can be fun and amusing, it isn't always to everybody's taste, so I decided that it was more important to treat the subject with respect, and use a straightforward, factual tone (hopefully not too deadly serious, however!). I took into consideration that most people with ASD enjoy facts and appreciate being able to apply logic, so I have always explained 'why' as well as 'what'. An example of this is when I discuss hygiene (an issue for a lot of adolescents, whether or not they have ASD!). I explain EXACTLY what causes body odour, which bits of the body are affected most specifically, the reasons why it is important to wash regularly (health as well as social reasons), and exactly HOW to wash. I don't assume knowledge or make generalisations that can be misinterpreted. Because of the love of knowledge that most people with ASD have, I have provided plenty of facts. For example, the usual rule in sexuality education is to avoid giving young people any sort of hang-ups by giving facts and figures regarding penis size; it's standard practice to say something like 'Whatever size your penis is, is exactly right for you.' This isn't clear enough or reassuring enough for young people on the autism spectrum, however. So I have given specific measurements of both flaccid and erect penises (of fully grown men), and plenty of other reassuring facts about penises, so that there is no room for confusion or doubt.
I have also been careful throughout the book to use correct terminology, with a view to modelling this so that adolescents know how to talk about sex in a respectful way, and can make themselves understood. There is a whole chapter dedicated to the subject of sexual language (including slang), as young people with ASD so often miss out on what is current because they aren't included in teenage groups.
There are some social issues surrounding puberty that can be veritable minefields for young people with ASD, and which are often not included in any detail in regular puberty books - namely, the rules that surround sexual behaviour (especially public vs. private behaviour, body parts, places and language); friendships; coping with teasing, bullying and peer pressure; and handling strong emotions (a particularly important issue for people on the autism spectrum). So I have included whole chapters on these subjects, with some specific guidelines, laid out in dot point format for easy reference. All young people need someone they can turn to when they have questions or anxieties, and research shows that most youngsters would love to be able to talk to their parents about sexual issues.
Many don't, however, often due to their parents' discomfort with the topic, instead turning to their friends for information (or misinformation). Adolescents on the autism spectrum may not be able to turn to a group of friends, so it is absolutely vital that parents and carers fulfil the role of mentor. There is no place for squeamishness or embarrassment - parents and carers MUST educate themselves and be there for their child. Throughout the book I make reference to the young person's social mentor, and give many pointers as to the role this person may take in terms of providing reassurance and guidance, giving accurate information, and helping with friendship skills and emotion management.
At the end of the book, I provide quite an extensive list of resources, both for parents and for the young people themselves. Some of these are specific to people on the autism spectrum and some are mainstream but still very relevant.
The book is illustrated with diagrams and cartoons to provide both detailed information (anatomical drawings etc.) and fun ways of viewing some of the points made in the different chapters. I hope these illustrations make the book more accessible and reader-friendly.
Patricia Robinson: Thanks for your comments!
The holidays can be a tough time of the year for adults and teens with Asperger’s. There’s a focus on parties, relationships, social interaction. The days get shorter and the weather gets colder. (At least here in the northern hemisphere.) Sometimes people may find they’re really getting a case of holiday blues, or worse depression.
First off, although I’m a mental health professional, I don’t do therapy over the internet and this blog is not intended as medical advice. If you’re feeling depressed, really down, or a danger to yourself or others, please contact a professional, right away!
Just feeling a little less upbeat than usual? There are things you can do to feel better. First off, it’s a great idea to re-evaluate your holiday plans. Are you focusing on obligations or what you really want to do? Try to reward yourself after you take part in that undesirable but obligatory family dinner or work lunch. Think about the things you love to do, your special interests, a hike through the woods, cooking a favorite meal. Whatever you love, be sure to leave time for that too, not just what other people like.
Realize that you may be a lot more introverted than those around you. A true extrovert loves parties and will feel energized and renewed after attending or hosting a party. But, if you’re more introverted, you need to give yourself plenty of alone time too. Schedule time for yourself just like you’d schedule in other events.
There’s a great deal of pressure in our society to be a part of a couple. It can be especially tough to be single during the holidays. Be good to yourself, just the way you’d expect a partner to treat you. Some people can have a great time by joining in with a group of platonic friends. Others want to be alone, and that’s fine. If you’re spending New Year’s Eve on your own, you can still treat yourself to a great meal, a favorite movie, or something else that makes the night feel special.
Take some time to review the past year. What great things have you accomplished this year? Pay attention to little triumphs too, they can really add up. Where do you want to be next year? It’s important to take some private time to take stock and set some new goals.
However you spend your holidays, I hope they’re special to you.
In an effort to keep this blog fresh and informative, I’m starting a new feature today. Periodically, I’ll be posting a “conversation” with other individuals who I think may be of interest to adults with Asperger’s and autism. If you’d like to contribute to a future conversation, please email me at firstname.lastname@example.org. Maybe I can interview you on this blog next!
Sex is a topic that isn't frequently discussed in connection to Asperger's Syndrome. There are a few books and several websites, but in general, I think sex is often an issue that gets overlooked. In the book Asperger’s From the Inside Out, author Michael John Carley discusses how issues around sex can be difficult for many adults with Asperger’s. (p. 110) Sensory issues, inadequate sex education, and difficulties with social skills can all contribute to problems in establishing and maintaining a healthy adult sex life. Therefore, I thought this topic would be a good place to turn to an expert.
Today I’m conversing with Isadora Alman, a Board certified sexologist and a California licensed psychotherapist and counselor. She’s the author of "Ask Isadora," a syndicated advice column on sex and relationships, which appears in newsweeklies nationwide, as well as the Sexuality Forum website.
Patricia Robinson: For starters, can you please explain exactly what a Board certified sexologist is, and how they work with clients?
Isadora Alman: As you know, the state of California licenses people helpers of several sorts: psychologists, social workers, and marriage and family therapists. All have their areas of expertise in people helping. There is no licensing for those who make sexuality their specialty so there are several professional organizations such as the American Association of Sex Educators, Counselors and Therapists and The American Board of Sexology who review the professional experience and expertise of those who do specialize and give them certification.
A sex therapist or a sexologist (one who studies sexuality) will be knowledgeable in relationships and in sexuality because one generally takes place within the context of the other. I might work with clients who have little or no sexual knowledge or experience, making referrals and offering resources to gain know-how and confidence. If a client's sexual expression is not as satisfying as it might be, I will work with him or her in making suggestions to improve knowledge and skill. And, since communication is a very important part of finding a partner and enjoying sexual expression, I will also help with that.
Patricia Robinson: I think lack of sexual experience and lack of confidence can be common issues for adults on the autism spectrum, maybe those who didn't get to experience dating and relationships when they were younger. How would you help a client who feels less experienced than peers?
Isadora Alman: For social skills I don't think there's anything better than a mixed (men and women) support or therapy group. There's is almost always one nearby anywhere in the Bay Area. There one can get information, support and feedback from others without going on an actual "date" until s/he is ready.
In matters of sexuality I strongly recommend educational explicit films put out by folks like the Sinclair Institute that show and teach all manner of sexual expression. I recommend a massage course to learn how to touch and be touched. I recommend weekend workshops such as the Human Awareness Institute's "Love, Sex & Intimacy". If a client would like, I can also make a referral to a sexual surrogate partner of either sex to learn hands on skills.
Patricia Robinson: There is so much information on sex on the Internet, and there are many different types of people to work with. (Therapists, medical doctors, sexologists, surrogate partners.) How can my readers be sure that they're getting good, educational and ethical information and help, and not just wandering into a misleading or exploitive situation?
Isadora Alman: The Internet is full of misinformation, it's true. Anyone can post anything. Unfortunately, there also exist people with degrees who may act unethically or have their own agendas, but usually membership in an accredited institution such as the American Medical Association or the American Association of Sex Educators, Counselors and Therapists is a fairly reliable endorsement. The very best endorsement is a referral from someone you know and trust who has used that person's services before. Ask around. Ask other professionals you trust to recommend someone. Sometimes the same name comes up as a resource from several sources. That's a good indication that this person is respected in his or her field.
Patricia Robinson: Isadora, thanks so much for talking to me on this topic. I’m sure this is an article that will be useful to many of my readers.
Patricia Robinson MFT
I'm a licensed therapist in Danville, California and a coach for Asperger's and ADHD nationwide. I work with individuals of all ages who have special needs, like Autism Spectrum Disorders, ADD, ADHD, and the family members and partners of special needs individuals.