Rudy Simone is an Aspergirl, self-advocate, writer, speaker, consultant, and coach specialising in help for adult Aspergers, particularly the areas of Employment, Female Asperger Syndrome and Relationships. She lives in the San Francisco Bay Area. Here, Rudy answers some questions about her new book, Aspergirls: Empowering Females with Asperger Syndrome, published by Jessica Kingsley Publishers.
For the book you interviewed mostly high-functioning women in their 20s, 30s, 40s, and 50s. How did the experiences differ from generation to generation, and what hasn’t changed?
Many of the older women in this book weren’t diagnosed until their children were, and the doctors then looked to the parents. Some were just diagnosed within the last couple of years. Imagine muddling through 40 or 50 years of life having Aspergers (AS), and knowing something is going on, but not knowing what! Getting diagnosed later in life means constantly having flashbacks, looking at past incidents in a whole new light and having several ‘aha!’ moments from that point on. It means converting bitterness, confusion and anger to wisdom, understanding and compassion. Many received the wrong diagnosis and medications to treat depression, PTSD, and other ‘co-morbids’ and were not offered the correct support. This often caused more problems than it helped. Most of us were blamed for poor behaviour and botched social interactions and it was assumed that we knew what we doing wrong when of course, we didn’t. Higher functioning individuals have more expectations on them because they don’t ‘seem’ autistic and so there was a lot of guilt internalised. We didn’t know why we didn’t fit in to the world. We didn’t receive social skills training, or therapy geared to help us with sensory issues. We didn’t understand any of the reasons for our unique challenges and behaviours. The biggest and best change is that AS is now being recognised in some young girls and so they have a name and a growing body of literature and support to turn to. They are one step ahead, but I still felt there were gaps I tried to fill in by writing Aspergirls.
Among the Aspergirls you interview for the book, what were the topics that they felt were most important to talk about?
Being misunderstood seems to be the most common thread for all of us. Our various cognitive, social and emotional differences give neuroptypicals the wrong idea about us. We often have our words and intentions misread, and are thought to be something we are not. For example we might be thought ”unintelligent” due to shutting down in social situations; ”rude” because of bluntness, ”bipolar” because of autistic meltdowns and ”control freaks” because of our rigidity and sensory issues. This seems to be the most painful aspect of having Aspergers. Many women also said mutism was their biggest problem. Not wanting to talk is different than not being able to, which is a physically and emotionally painful experience that leaves one feeling embarrassed, ashamed and inadequate. Men experience that too and of course we all have stomach issues, which for many are daily, debilitating and quite painful. People with AS get so used to things like IBS (irritable bowel syndrome) they accept them as part of life.
What does it mean to be a mother with Aspergers?
Being a mother with AS, particularly if your children are neurotypical (non-autistic), presents some interesting challenges. It may not occur to an AS mother how important all those little social situations are to their child. Our children might be embarrassed by our eccentric behavior, either in public or when their friends are invited over. We might not recognise our daughter’s friends or their parents immediately which can make for awkward moments. We don’t chit chat in the parking lot or playground with other mothers, we don’t get invited for coffee, etc. If we have a neurotypical child there are milestones we might think frivolous or not see the significance of—the big game, the prom, things we should go out of our way to see, support or acknowledge. It is helpful, priceless actually, if we have a non-judgmental friend or family member to provide pointers here and there. On the other hand, we do make excellent mothers in many ways…we are very ‘hands on’, and get involved in our child’s education. We tend to be honest parents; we don’t underestimate our child’s intelligence or talk down to them. We often love to get down on the floor and play with our kids, or teach them about the things that we love, whether it is science, music, whatever our special interest is.
In each chapter of the book you include a section called ‘Advice for Parents.’ How might raising an Aspergirl be different from raising a boy on the spectrum?
I don’t like to speculate about raising a boy. I’ve no experience of that. But girls have a whole different set of expectations, vulnerabilities, hormones and milestones to contend with than males. Not better or worse, just different. People with AS don’t really identify with a gender or an age group—we think people are people—but there are differences and we’ll find out the hard way if we’re not prepared. We can be vulnerable to sexual predators. Girls have more pressure on them to be social, to be tactful, to say the right thing, to look fashionable, etc. We can and do learn, but these things do not come naturally. We learn masking and coping skills and become great actors. The veneer is thin, and when social or emotional expectations exceed our capabilities it doesn’t take much for it to fall away entirely. We’re also expected to be nurturing and may struggle with guilt and confusion when our attitudes towards love, sex, marriage, children etc. don’t match up exactly to what we’re told we ‘should’ feel, by the media, culture, neurotypicals, etc. It is important for a parent to understand that an Aspergirl’s most prized possession is her unique intelligence and she wants to be appreciated for that more than anything. Her education and utilisation of her unique skills is the key to a satisfying, fulfilled life. Some will want socialising, some won’t, but it is important that she learns to value others, so that she does not end up isolated, and so she can share those gifts with the world.
One of your hopes in writing the book is to ‘help the helpers.’ What are the most crucial lessons that you hope counselors, psychologists, doctors and educators will take from your book?
I believe that savant skills and/or an early ability to read and comprehend above our years (hyperlexia) gives some young Aspergirls an air of intellectual maturity that tricks people into thinking we possess emotional maturity as well. Strong verbal or scholastic ability hides our deficits. Our special interests tend to be less abstruse than males’ and all our little soothing behaviours can be considered normal for girls, whether it’s twirling, rocking or playing alone in our rooms. Girls have more pressure applied on them to be social and, general wisdom states, we are better at mimicking. By the time we’re older, we’ve acquired so many masking skills, we become so adept at faking it for short periods of time, that we don’t seem to have Aspergers at first glance. Meltdowns and other aspects of having AS are put down to psychological disorders which may have arisen as a result of mismanaged or undiagnosed AS. Educators, advocates and those in the medical profession need to learn how to see past the symptoms to the source—mild autism, or Aspergers syndrome.
Visit www.help4aspergers.com for more information about Rudy and her work.
Copyright © Jessica Kingsley Publishers 2010.