Asperger’s and Sex: A Conversation
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 email@example.com. 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.
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 involved in some way with autism, Asperger's, ADHD or social skills for kids. If you'd like to contribute to a conversation, please email me at firstname.lastname@example.org and let me know what you'd like to talk about. Maybe I can interview you on this blog next!
Today I'm talking to Mel C. Mel is the author of the blog Nitzy Fritz. She's the mother of an autistic son, and a neurotypical daughter. Although we haven't met in person, I've been following her blog postings for a while.
Patricia Robinson: Mel, one of the issues that a lot of parents struggle with is how to speak to their child about his or her diagnosis. Tony Attwood, the author of The Complete Guide to Asperger's Syndrome, states that there are a number of advantages to a child about knowing about the diagnosis. (p. 29) This can include things like removing fears of having another, potentially more worrying, diagnosis, and the recognition that the child is actually struggling with very real difficulties. I'd imagine the situation is the same for children with other diagnoses on the autism spectrum. Still, it's hard to know when to start the discussion of a child's diagnosis, and to know how much to say. I'm interested in hearing about your experiences in this area.
Mel C.: My experience was unusual in that my son was diagnosed late (5 1/2) although I had suspected since he was two. I had lived with the idea of autism for so long that I had gotten used to it. I did struggle with when to tell my son and how to tell him. I had always been open with everyone else, from the schools to the person in line behind me at the grocery store, but hadn't told Liam yet. I realized that if I didn't do it soon, someone else might! There are two schools of thought on this--some parents don't reveal the diagnosis to the child, either trying to avoid a label, or hoping the child will "recover" and no longer have the label.
When I did decide to tell Liam, I used two great books to open the discussion--My Friend with Autism and Andy and His Yellow Frisbee. I read the books to both kids, then said, "Do you know anyone who might have autism?"
Zoe immediately yelled, "Yes--Liam!" It seemed like she was relieved to put a name to what was so different about her brother. I said, "Liam, did you know you have autism?" He mumbled, "Yes" and left the room. I tried to bring it up a couple of times after that, but he clearly didn't want to talk about it. About six months later, he saw my sister wearing a puzzle piece pin and asked her why. She said, "To let people know about autism." He said, "Oh. You know, I might have autism." We just let it go, but he seemed to have a greater acceptance after that moment.
Now we are at the point where we can have conversations about autism. This summer, when I came home from a very powerful autism conference, I sat him down and said to him, "I am proud of you and I'm proud that you have autism." He said, "You are?? You mean, you're not mad?" "Of course not!" I said and we had a talk about all the reasons I'm proud of him. I know some parents who still have not told their 7, 8 and 9 year olds. I would never say my parenting methods are superior to someone else's (at least not out loud), but I do worry about the shame those kids might feel when they finally do find out. They're going to wonder why something so integral to who they are was kept a secret for so long.
We try to celebrate the positive aspects of Liam's autism, while pointing out it is just one way in which everyone is different. He doesn't use autism as an excuse (at least, not yet), but sometimes I will remind his sister when she gets frustrated with his perseveration or delayed social skills.
PR: What a supportive approach! I think it was really important that you gave your son some time to adjust to the idea of autism, and let him come to terms with it at his own pace. Reading a book together and then leaving it out for the child to look at again works so well - it conveys acceptance and still gives the child some control over the conversation. I also love your strength based approach. Can you talk more about the positive aspects you see in Liam's autism?
Mel C: Liam has the most fantastic memory. He always remembers names--sometimes I need his help with that! Once his language developed, it became clear that he was absorbing and recording everything on his little neurological DVR even as he appeared to be "in his own world". He remembers small details about things that happened years ago. Once he has seen a movie a few times, he can "watch" it in his mind. From what I hear, this is not uncommon for people on the spectrum. His information is usually reliable, because he doesn't lie.
Liam has a condition called synesthesia, which I believe is related to his autism. He "sees" the days of the week, months, numbers and letters in specific colors. This may be why schedules are so important to him.
He has a unique way of looking at the world, which helps other people to see things differently, too. I learn from him on a daily basis. Some days that learning takes a lot of patience.
Contrary to what we think we know about autism, Liam is capable of forming intense bonds with people (always adults). I have seen it time and time again-- he will meet a new person, look deep into their eyes and talk to them; completely charming. He seems to know when someone needs a little extra love or attention. It's the kind of emotional skill that I don't think you can teach.
I try to make him aware of these special skills he has because we spend so much time every day working on all the things that are hard for him--academics, fine motor, peer relationships. I think it's important to remind him he is good at a lot of things too. The most rewarding part of being Liam's mom is that when he does get something we've been working on, it's over the top joy for me.
PR: Beautiful! Your son sounds like a very special person. Mel, thanks for talking to me about this topic, and I hope we can do this again.
Individuals with Asperger’s and autism frequently struggle with both social skills and sensory issues. More than just two separate symptoms of autism spectrum disorders, these situations interact with and build on each other. Difficulties in managing intense sensory inputs can make it terribly tough for children to focus on social connections. And, a few sensory overload meltdowns can mean that a child is quickly labeled by the other kids as a misfit and social outcast.
Let’s first look at a typical school setting. Classrooms are bright and cluttered, filled with posters and bulletin boards, blinking fluorescent lights and smelly animal cages. And then the bell goes off every 45 minutes. The classroom doesn’t compare to the sensory overload of lunchtime and recess, where hundreds of children are all talking at once, eating lots of different smelling foods and then running around and yelling outside. All this input can be too much for a child with sensory integration issues.
For many neurotypical kids, lunch and recess function as breaks in the school routine, a chance to shift focus, relax from the academic pressures, socialize and have fun. This may not be the case with teens and children on the autism spectrum, where the sensory overload and lack of structure can make this the most stressful part of the day. When the sensory issues are so overwhelming, there’s little capacity left to focus on interpreting and sending appropriate social signals, much less any chance to take a break.
So what can you do to help your child? It’s important to understand your child’s environments at school. For younger students, you can often volunteer as a classroom, lunchroom and recess assistant, and can readily see your child in the school environment. For older kids, having a parent hovering nearby may be a social detriment, but you may be able to check out the classroom, lunchroom, and playground when other age ranges are using them. Focus on sensory issues, especially things you know are issues for your child.
It’s also important to look for clues to sensory overload. If your child is having meltdowns at school, pay attention to when and where they’re occurring. When I worked as a school therapist, I knew that rainy day lunchtimes in a crowded cafeteria were the most difficult environments for many of the students. Lots of them would act out on those days. Some kids don’t fall apart while they’re being overwhelmed, they seem to hold on until things calm down and then show their struggles with tears, tantrums, or withdrawn behavior.
Ideally, kids will stay with the rest of the students and have a chance to interact and socialize. Something as simple as permission to wear sunglasses may make this possible. But, if the environment is simply overwhelming, it might be necessary to make some accommodations. Maybe your child will need to eat in a quiet classroom or the office before heading out to the playground, or be allowed to go to the library instead of the playground after lunch. Socializing is important, but so is the opportunity to regroup and calm down. Think seriously about what would work best for your child, and remember that it’s better to have 10 minutes of positive socializing than 45 minutes of sensory overload.
For more information on understanding and managing sensory issues, Zosia Zaks’ Life and Love: Positive Strategies for Autistic Adults, (2006, Autism Asperger Publishing Co.) is a wonderful resource. Although its written for adults, the author includes an insightful explanation of what’s happening during sensory overload situations and many useful strategies for how to manage these situations. You can find a full review of this book in my blog Coach for Asperger’s.
Zosia Zaks has written a number of insightful and informative pieces on the topics of autism and Asperger’s, and you can find some of her work on the GRASP website, as well as in Autism Asperger’s Digest magazine. Recently, I wrote about her essay on empathy in my blog Social Skills for Kids, which I write to parents of children on the autism spectrum. Her most comprehensive work to date is the book Life and Love: Positive Strategies for Autistic Adults (2006, Autism Asperger Publishing Co.).
Life and Love: Positive Strategies for Autistic Adults is an insider’s guide to many aspects of life on the autism spectrum. Zosia Zaks has a master’s degree in Technical Journalism, and, like many adults with Asperger’s Syndrome, was not diagnosed with Asperger’s until the age of 31. In the first half of the book, entitled, "Life", Zaks takes on concrete and straightforward topics such as the practicalities of managing sensory issues, household chores, shopping, travel and healthcare. From her insider perspective, the author gives step by step instructions and detailed tips for a number of situations, like putting together a sensory emergency kit of items such as sunglasses and headphones, or sample schedules for managing clutter and organizing the home. This is the kind of practical, step-by-step information that will be useful for those who are struggling with the details of daily life. There’s also some brief but concrete and specific advice for attaining career success, including choosing an appropriate job and managing social issues at the office.
The second half of the book, entitled, "Love", is where Zaks shows her full range as a writer and the book really comes to life. The "Love" section of the book focuses on relationships, from friendship, to dating, to committed partnerships. Zaks skillfully shifts back and forth from abstract concepts, such as falling in love, to concrete tools like defining acceptable and unacceptable behaviors. The author continues to write in a practical and useful manner, but she discusses more emotional topics, like dealing with conflict, social isolation and the very real differences of life for males and females on the autistic spectrum.
There are also sections on internet dating, relationships with non-spectrum partners, and the different levels of friendships. This section also includes extensive materials on how individuals can keep safe while interacting with others, and a discussion of the pros and cons of disclosing an autism diagnosis.
I recommend this book to those on the autism spectrum and to those who care about someone on the spectrum. The first half of the book can function as an ongoing, practical reference, almost like an instruction book for adult living. The second half is much more, something to read and consider, and a way to deepen your understanding of relationships, whether you’re on or off the autism spectrum.
A High School Program Based on DIR
The Community School is a small private school for teenage boys with autism and other ASDs in Decatur, Georgia that uses a program based on Stanley Greenspan’s DIR/Floortime method. There’s an interesting article on the school and the DIR/Floortime approach in the New York Times Magazine entitled Reaching an Autistic Teenager, by Melissa Fay Greene, published on October 17, 2008. This article gives some concrete examples of using Floortime with older kids in a school setting. True to Greenspan’s examples with younger kids, the school attempts to connect to the pupils by first following the student’s lead to make a personal and emotional connection, and then challenging the student to foster development and growth.
As stated in their website, the Community School follows an “emphasis on social-emotional development, communication and relationship skills, and contextual, experiential learning. This program offers a nurturing and highly interactive learning environment built around experiences of strong personal interest.”
Look Me In The Eye: My Life With Asperger’s, by John Elder Robison, is an insightful and fun book for parents of kids on the autism spectrum, as well as older teens. It’s also an easy way for others, such as teachers, caregivers and extended family members, to connect with and understand the unique ways that people on the spectrum may be thinking. The author does a great job of relating the events of his life from an observer’s perspective, while explaining his internal thought process at the same time. Many parents already understand how their kids are thinking, but it can be difficult for others with less familiarity with the autism spectrum.
The author first achieved a small amount of fame when his brother, Augusten Burroughs, wrote about him in his own book, Running With Scissors. Burroughs then encouraged Robison to write his own memoir about growing up with undiagnosed Asperger’s. The result is Look Me In The Eye. Look Me In the Eye is that great combination of funny and entertaining, while giving the reader a close up viewpoint about what it was like to grow up feeling different, misunderstood and like a misfit. Robison writes about his childhood and adult life, and he’s introspective and forthcoming about what was going on for him as he tried to figure out how to make friends, follow social rules and use his impressive intellectual gifts.
One interesting chapter is early in the book, where Robison discusses his earliest friendships. It’s heartbreaking to see the problems he has in connecting with other children in spite of his well meaning, friendly advances. Robison clearly points out his own limited way of thinking, for example, he couldn’t conceive of the fact that there might be more than one way to play in the dirt. His preschool attempts to make a friend are rejected when he can’t pick up on the cues his companion is sending, something many parents are all too familiar with in watching their own children.
Robison also discusses how he makes some slight behavioral changes after learning of his diagnosis. He worked on making more eye contact, followed more neurotypical rules for conversation, and made more small talk. His result was that he suddenly made a lot more friends and was included in social functions. At the same time, Robison doesn’t give up his quirky personality. He’s unusual and brilliant, and seems to succeed professionally and personally because of that. Maybe that’s the best part of this book. While taking a clear and honest look at the problems the autism spectrum may bring, the gifts of autism are even more apparent.
Is it worthwhile undergoing diagnostic testing if you’re an adult and you suspect that you have Asperger’s? That’s a question that seems to come up frequently. There are pros and cons and no answer is right for everyone. But, it can be helpful to look at the experiences of others.
Last month (September-October 2008), Autism Asperger’s Digest Magazinepublished an article entitled "Better Late Than Never", by Douglas Hogetvedt. The author was diagnosed with Asperger’s at the age of 49, and he writes about his experience with later life diagnosis. Some of the points he raises are that with the diagnosis his life “finally made sense.” He discusses how his diagnosis helps him understand his past, and makes him feel energized about his future. Hogetvedt did a lot of his own research through books and online before getting a formal diagnosis from a psychologist. He also talks about how difficult it was to find a professional who works with adults on the autism spectrum.
In the memoir Look Me In the Eye: My Life With Asperger’s, author John Elder Robison, discusses his own diagnosis at the age of 40. Like Douglas Hogetvedt, Robison first considered his own condition after learning about Asperger’s from a friend. Robison was given the book Asperger’s Syndrome, by Tony Attwood. He describes reading the book and experiencing relief that there were others like him. “All my life, I had felt like I didn’t fit in. I had always felt like a fraud or, even worse, a sociopath waiting to be found out.” (p. 238) Robison questions how his life might have been different if he’d had the knowledge earlier, and how he missed opportunities for relationships and education. He discusses how the diagnosis helps him feel that his knowledge and abilities are both rare and legitimate.
The other interesting point is how Robison used his knowledge of Asperger’s to understand the neurotypical world, and how he started making some conscious efforts to behave differently. He states that those changes resulted in getting different reactions from those around him. He defines this as moving from “being weird to being eccentric” (p. 240) and that the confidence his diagnosis gave him helped him to make friends. Robison also makes the point that he’s not defective, and that his Asperger’s traits contribute to his strengths.
The Complete Guide to Asperger’s Syndrome, by Tony Attwood (p. 29) has a long discussion of the pros and cons of diagnosis for both children and adults. It’s too lengthy to summarize here, but certainly worth checking out. Attwood gives mostly positives of diagnosis, but has a few cautions as well.
So how do you get a diagnosis if you want one? The ideal is to find a psychologist who specializes in autism and Asperger’s and who works with adults. Some medical doctors are very familiar with the diagnosis, others don’t have much experience in testing or with Asperger’s. There is no blood test or simple, universal method to test for Asperger's, so the experience of the professional is important. If you’re just looking to get some understanding of yourself, and you don’t want a formal evaluation, you can start with the scales published by Simon Baron-Cohen. The Essential Difference: Male and Female Brains and the Truth About Autism (2003) has a range of self tests in the appendix that you can take before seeking professional advice.
(As a final point, I’ll end by stating that I am not giving medical advice. Please seek professional advice if you have concerns about medical issues.)
The Importance of Downtime
Kids and teens with special needs like Asperger’s, autism, ADHD and ADD are frequently getting lots of special services, like resource programs at school, therapy, group treatments, and tutoring. Then add in the fact that these kids spend the day struggling to read the social cues of their peers and teachers. While neurotypical kids may recharge at recess and lunch, these kids may struggle with the pressure of sports, too much sensory input, and unstructured, unpredictable social interactions. When they get home, they may feel exhausted and overloaded, and it’s time to start in on homework. No wonder they’re exhausted!
Many individuals on the spectrum say that they work very hard to behave in a manner that’s acceptable to the neurotypicals around them. Frequently, I read about people saying that they need to recharge after spending time socializing. What may look like a waste of time to parents may be just what your child needs to get ready to go out into the world again.
Isabel Briggs Myers, one of the originators of the famed personality test, the Myers-Briggs Type Indicator, wrote about introversion and extroversion in Introduction to Type. (6th edition, 1998, Consulting Psychologists Press, Inc.) In it, the distinction between introverts and extroverts is made on the basis of how individuals receive energy. Extroverts are defined as people who “receive energy from interacting with people and from taking action.” Introverts receive energy from “reflecting on their thoughts, memories and feelings.” (p.9)
Many individuals on the autism spectrum have what Tony Attwood terms “special interests”. In The Complete Guide to Asperger’s Syndrome, 2007, Attwood states that “the pleasures associated with the special interest are greatly superior to many other pleasures in life.” (p. 183)
It’s so easy for families to get overloaded and overwhelmed. But, it’s as important to schedule in downtime as it is to make time for sleep. Both might make it easier for your child to learn and function at the best level the next day. Give your child the gift of downtime.
Check out the latest autism article in the UK’s TimesOnline: Autism genes can add up to genius: Intellectual gifts and certain brain disorders are closely related, by Jonathan Leake. Leake discusses a Cambridge University study by Simon Baron-Cohen which studied mathematicians and their siblings and found a much higher rate of autism among them than in the rest of the population. Baron-Cohen stated, “It seems clear that genes play a significant role in the causes of autism and that those genes are also linked to certain intellectual skills.” This new study seems to agree with some of Baron-Cohen’s earlier work, where he found, “Separate studies have shown that the fathers and grandfathers of children with autism are twice as likely to work in engineering. Science students also have more relatives with autism than those in the humanities.”
In the article, Leake also discusses a study by Patricia Howlin, of the Institute of Psychiatry at King’s College London, which found 39 of 137 people with autism possessed an “exceptional mental skills, such as memory.”
Thanks to the Autism Hub blog LeftBrainRightBrain for pointing me in the direction of this article.
Social Skills: Kids versus Adults
I just posted an entry on my companion blog for adults with Asperger’s about managing small talk at the office and it got me thinking. Reading social signals is an issue for many people with Asperger’s, other autism spectrum disorders, and ADHD, whether a child, a teen or an adult. But a big problem is that the rules for social skills are so different for kids and adults. It’s important that adults keep this in mind when assessing their own children’s behaviors and the behaviors of the other kids your child spends time with. You can’t expect kids to behave like little adults, in fact, that “little professor” behavior is what is often seen in kids with Asperger’s.
The flip side of this issue is that kids who struggle with social skills need to realize that their peers are not going to follow adult rules. Children are often rude, tacky, silly, or distracted with each other. It’s not a reflection on their companions, it’s just kid behavior. Often, I’ve seen children get hurt feelings, get angry and lash out, or withdraw because they think the other kids aren’t treating them well. Certainly, that may be the case, but often I think the situation is misinterpreted.
In the years I worked as a school therapist, I had the opportunity to work with both the school "bullies" and the school "victims". What I learned from this dual perspective is that generally, each side of the conflict saw things differently, and often the “bully” wasn’t nearly as hostile as the “victim” thought.
Part of my message here is that kids with social skills challenges may be misreading the other kids’ intent. Bullying does occur, and shouldn’t be tolerated. But pause before you call it bullying, because it may be just a misunderstanding. Kids act like kids, and shouldn’t be expected to act like adults.
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.