Thrive On the Autism Spectrum

Sexuality and Autism, Seminar in Baltimore

I’ve long been a fan of Zosia Zaks, author of Life and Love: Positive Strategies for Autistic Adults as well as numerous articles on autism related topics. Zax’s organization, Zax Autism Consulting, is sponsoring a sexuality workshop for adults on the autism spectrum. Unfortunately it’s not local to the Bay Area where I work, but for those readers in Baltimore, MD, please consider attending. The presentation is in two parts, on the evenings of December 11, 2010 and January 15, 2011. For more information, contact Susan Howarth at (443) 676-5366 or successtransitions@comcast.net.

Help for LGBTQ Youth

Many teens and young people are dealing with issues involving their sexuality, as well as Asperger’s or other Autism Spectrum Disorders. High school and middle school can be hard for everyone, but for those who feel like they don’t fit in, it’s especially tough. School bullying is rampant, and often the targets are just those kids who are different, such as the kids on the autism spectrum, or lesbian, gay, bisexual, transgender, or questioning (LGBTQ) kids, and maybe most of all, the kids who are dealing with ASDs as well as LGBTQ issues.

Sadly, there have been a number of tragic deaths recently of LGBTQ young people who’ve been harassed by classmates. There are so many resources available to anyone who’s being bullied, or feeling picked on, or different, or thinking that that life won’t get better.

One excellent resource is The Trevor Project, which the site describes as “The Trevor Project is the leading national organization focused on crisis and suicide prevention efforts among lesbian, gay, bisexual, transgender and questioning (LGBTQ) youth. If you or a friend are feeling lost or alone, call The Trevor Helpline (866.4.U.TREVOR), 24 hours a day, seven days a week.”

Related to the Trevor Project, is the It Gets Better page on You Tube. Both celebrities and ordinary people have submitted videos of their own experiences in dealing with school, bullying, and especially bullying about sexuality. Project Runway’s Tim Gunn, Glee’s Chris Colfer (Kurt), Neil Patrick Harris, Perez Hilton and others have recorded messages.

Please don’t think that you should struggle on your own with issues regarding sexuality, whether you’re on the autism spectrum or not. And none of these issues mean that you can’t go on to have a successful, happy life. If you’re feeling isolated and different, please use these resources to find support.

Book Review: Mozart and the Whale: An Asperger’s Love Story

Mozart and the Whale: An Asperger’s Love Story, by Jerry and Mary Newport, with Johnny Dodd, is a sometimes hilarious, often heartbreaking, but ultimately inspiring story of a couple who never really fit in, until they met each other. Jerry Newport is the author of several earlier books, and he’s been quite active in the Asperger community, even starting the support group where he met his future wife.

Both Jerry and Mary Newport relate the stories of their own difficult childhoods, growing into adults who struggle with relationships, underemployment, and social isolation. Jerry’s portrayal is engrossing for many reasons, not the least of which is his unique way of viewing the world through numbers. In spite of his mathematical genius, Jerry struggles to find a career that uses his skills in any way, and frequently has to make a living through less challenging jobs, and admits to having no concept of how to relate to women.

Mary’s story is less typical, and often truly tragic. So often, Asperger’s is thought of as a male diagnosis, and women on the spectrum are overlooked. Mary Newport, as so often happens with Asperger’s women, does manage to have relationships, although they fall into the realm of dysfunctional, often abusive, and sometimes bizarre.

The framework of the book, and the real soul that makes the story so is compelling, is the couple’s relationship, their struggles to connect and understand each other, and their commitment to support each other and grow. They often don’t fit the norms society may expect, but Mozart and the Whale is inspirational.

Married to Someone with Asperger’s?

A lot of people, usually women, call me because they suspect or wonder if their partner or spouse might have Asperger’s or autism. They might be looking for a way to understand, a solution to a specific problem, or a way to “fix” their partner. (If you’re wondering, no I can’t fix your partner, that would be like trying to fix my left-handedness. Asperger’s is a neurological and behavioral difference, not something to be fixed -  which doesn’t mean that all couples can’t learn to communicate and relate to each other in a healthier way.)

There are many reasons a person would choose to be involved in a romantic relationship with an individual on the autism spectrum. Often the autistic partner is more reliable, honest and steady, there’s usually a relief since there’s so much less game playing. A lot of men with Asperger’s seem to really see the woman for who she is, not being drawn in to the cultural limitations that women must fit a certain mold. And of course, the intellectual depth can be very appealing.

At the same time, autism and Asperger’s really do involve a different way of seeing the world and dealing with it, especially socially, in the context of relationships. This fact can mean real difficulties within marriages. All marriage counselors quickly see that the very things that draw a couple together in the first place are the same things that really bother them later on. The strength of Asperger’s that draw a couple together can also pull them apart.

For those neurotypical spouses and partners looking for support, GRASP has an new online group. GRASP, The Global and Regional Asperger Syndrome Partnership, has a number of local support groups, primarily on the East Coast, as well as online support groups for various Asperger’s related issues. One of the great strengths of GRASP is its strong support of adults on the spectrum, as well as the focus on having autistic individuals running the organization. If you’re a neurotypical partner of an individual on the spectrum, why don’t you check out this new group?

Asperger’s, Sex and Sensory Issues

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.

GLBT and on the Autism Spectrum?

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.”

Coping With Shyness - Guest Blogger Sylvia Meier, MFT

Today's post about dealing with shyness was written by my colleague Sylvia Meier, MFT. Sylvia has a private psychotherapy practice in Dublin, CA, and runs groups for single women who want to develop more social skills, and to start dating. You can learn more at her website.

Although shyness and Asperger's or autism are different, they have many issues and emotions in common. In both cases, it can be stressful or even nerve-racking to step out of your comfort zone and become more social. But, for many individuals, especially those who are feeling lonely, meeting friends, or even a romantic partner, can be their goal. I thought Sylvia's advice might be helpful for these people. 

Coping with Shyness, By Sylvia Meier, MFT

There is great pressure these days to be extroverted and bubbly.  It can be a painful experience to be introverted when you want to meet people to date.  Take a few risks out of your shell and meet new people. 

Being shy has its pluses.  Many shy people I know are excellent listeners, thoughtful and great companions.  Stretch yourself without losing your sense of self.  Create opportunities to meet new people.  Stay sure about who you are and meet a partner who loves your introspection. 

Some symptoms of anxiety in social situations:
-blushing
-heart pounding
-"butterflies" in the stomach
-strong feelings of uncertainty
-difficulty carrying on a conversation

This anxiety is sometimes brought on by:
-lack of confidence
-not feeling "good enough"
-negative thoughts
-fear of the unknown
-lack of practice in social situations
-previous experiences
-unresolved conflict or trauma

Learn to relax.  When you notice that your muscles are tightening, tension is building, loosen up.  Focus on breathing and letting go of tightness. 

Try meditation or yoga.  Think of a special place that is calming for you.  Remember that quiet beach you strolled on when you were on vacation?  Do you have a memory of a secret garden from childhood?  How about that waterfall during a spring hike in the mountains?  Whatever your special place is, go there daily for several minutes.   Anchor this spot in your mind so that you can access it during stressful, social situations.

Acknowledge your anxiety.  The physiological symptoms are real.  Shy people have to work hard to manage the physical stress caused from feeling nervous..  In the beginning, it may seem like you have no control.  With practice, in time, you can learn to manage the physical reactions.

If you've made a conscious effort and you're still struggling, therapy might be worth a try.  A good therapist can help you to work through any unresolved issues that are getting in the way.

Asperger’s and Dating: Getting Started Later in Life

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.

Asperger’s and Sex

Guess what’s the most popular search term for this blog? OK, I kind of gave it away in the title of this post, but not surprisingly, more people come to this blog through the keywords “Asperger’s” and “sex” than anything else. In October 2008, I posted an interview with Isadora Alman, a Board certified sexologist and a California licensed psychotherapist and counselor. Are you surprised that it was my most popular post? Clearly, people want information on Asperger’s, autism and sexuality.

As a licensed therapist and professional coach, I want to direct people to helpful, reputable information. We all know that the internet is filled with  misinformation and websites of dubious reputation. So where can individuals on the autustic spectrum get good information? As Isadora Alman said in my earlier post, “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.”

I also recommend turning to respected books for information. On my other blog, Social Skills for Kids, Sarah Attwood discusses her book Making Sense of Sex: A Forthright Guide to Puberty, Sex and Relationships for People with Asperger’s Syndrome. (Jessica Kingsley, 2008) This book is aimed at adolescents, but it’s incredibly detailed and complete, and can be useful for any adult who missed out on learning all the facts, things like contraception and sexual language, as well as issues around relationships.

In The Complete Guide to Asperger’s Syndrome, (Jessica Kingsley, 2007) Tony Attwood specifically addresses several areas regarding sexuality, such as pornography and the impact of tactile sensitivity on sexual relationships. He references M. Aston’s Asperger’s in Love (Jessica Kingsley, 2003) and I. Henault’s Asperger’s Syndrome and Sexuality. (Jessica Kingsley, 2005) (I haven’t read these books yet, so I can’t comment on them.)

In Life and Love: Positive Strategies for Autistic Adults (Autism Asperger Publishing Company, 2006) Zosia Zaks doesn’t focus on sexual education, but she does discuss the more relational aspects, such as dating, internet dating, safety, and appropriate behaviors. More about this book can be found on a previous post on this blog.

I’ll be posting more about Asperger’s, autism, sex and relationships on this blog, so check in frequently, or sign up for my blog feed.

Sex Education for Kids and Teens with Autism and Asperger's: A Conversation with Sarah Attwood

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!