Girls Growing Up on the Autism Spectrum

What Parents and Professionals Should Know About the Pre-Teen and Teenage Years

Shana Nichols

• Publisher: Jessica Kingsley Publishers
• Year: 2009
• ISBN:
  9781846428852
• Topic: Psychologie
• Subtopic: Autismus-Spektrum-Störungen

This book is not only reassuring; it is inspiring, and bursting with ideas and achievable strategies. The authors write with authority and conviction, and tackle even the most difficult and delicate of topics. If ever you needed to be convinced that girls with ASD can overcome the difficulties and challenges of puberty and adolescence, have successful friendships and relationships and enjoy a healthy sexuality, then take the time to read this book - it is a must-have for families, teachers and therapists alike.'
-Sarah Attwood, author of Making Sense of Sex: A Forthright Guide to Puberty, Sex and Relationships for People with Asperger's Syndrome

Growing up isn't easy, and the trials and tribulations of being a teenager can be particularly confusing for girls with Autism Spectrum Disorders (ASDs). This book covers all the concerns commonly faced by girls with ASDs and their parents, from periods and puberty to worries over friendships and 'fitting in'.
Taking a good look at these adolescent issues, and many more, within the context of specific areas of difficulty for girls with ASDs, the authors provide families with the knowledge and advice they need to help their daughters - and the whole family - through the teenage years. This book addresses core issues such as cognition, communication, behavior, sensory sensitivities, and social difficulties; it gives candid and realistic advice on a wide range of important teenage topics.
Providing professional perspectives alongside personal experiences from mothers, daughters and educators, this is a unique and indispensible guide for families and their daughters with ASDs, as well as the teachers and professionals who work with them.

CHAPTER 1

What Do We Currently Know about Girls and Women with Autism Spectrum Disorders?

My daughter is 18 and was only diagnosed last year (at 17) with Asperger’s Syndrome. I had never even heard of it before last summer. I had shared anecdotes about her with a coworker and he asked me if she had ever been diagnosed with Asperger’s. I went online and read up about it—and sat at my computer crying. All of the things we never “got” about her—all of the things we never understood—were finally becoming very clear! I immediately called my sister and she went online and we both read and read and gasped and gasped…over and over. (Mother of a recently diagnosed 18-year-old girl with Asperger’s Syndrome)

ASD was not actively pursued as a diagnosis for girls during the early 1990s. I, nor did my family, know that the collective aspects of my personality was in any way related to ASD. My family and I believed that I was just a “unique”, if not, “weird” individual. (31-year-old woman with Asperger’s Syndrome, depression, and anxiety)

Asking the question…

Until very recently, the question posed in the title of this chapter had received little attention in the academic literature, and yet families of daughters with autism spectrum disorders (ASDs), along with the professionals and educators who work with them, ask it every day. They are looking for answers that will help them to better understand their child, inform educational and treatment approaches, and help them to prepare their daughter for a healthy and safe adolescence and adulthood. In our work with families, we are asked this question often, and in many different ways:

•“Are there going to be any other girls in the group?”

•“I can’t seem to find any resources geared toward girls with autism.”

•“Is there a support group for families of girls on the spectrum?”

•“My daughter is depressed because she doesn’t know anyone like her. Can you help?”

•“My daughter is turning 15, and although she’s very bright, she can’t manage her menstrual cycle. What can we do?”

If you are reading this book, you are probably someone who is looking for answers to similar questions. You are someone who cares about your daughter’s future, your student’s education, or your client’s happiness and wellbeing. You are asking questions, and looking for answers, about girls with ASDs. Though this book is written as a guide for parents, we expect that it will be helpful not only for families but also for others who work closely with girls on the autism spectrum as they face the challenges of entering and navigating adolescence.

Case study: Karen

When Karen came to see us at the clinic, she presented as a shy, anxious adolescent (14 years old) who seemed very unsure of herself. She was soft-spoken, sweet, and would smile and laugh quietly when engaged. She was able to carry conversations, but it often took her a long time to formulate her responses. Karen was very interested in cats and Egypt, and though initially hesitant, she enjoyed sharing these interests with the examiner when prompted to do so. Karen’s presence in the room was very unassuming. She often stood with her shoulders slouched and her head down, eyes gazing toward the floor. Her long hair would cover her face, and she tended to wear large, baggy clothing. Karen’s mother had been told that she had an anxiety disorder; however, her mother felt that something else was going on. Her difficulties seemed to extend beyond just anxiety.

What families have shared

In our time working and talking with women, families, and daughters, we have asked what they feel are the differences between females and males with ASDs. Some families live in communities so small they know only one or two other children with an ASD. Others have reported that they do not know any other girls like their daughter, and so they are not sure if boys and girls are different. However, many families, and women with an ASD themselves, feel strongly that the difference is there, sometimes subtle, sometimes more obvious. Differences have been hypothesized related to biology, the diagnostic process, communication, behavior, and other clinical symptoms. The following statements summarize quotes from individuals and families, and represent the variety of viewpoints we hear.

•“Girls and women are underdiagnosed, and it takes longer to get a diagnosis.”

•“From my experience, it seems like girls have more seizures than boys.”

•“Girls fly under the radar, and tend to be more shy.”

•“I think boys’ symptoms tend to be more classic.”

•“Girls’ symptoms seem to be more internalized, such as anxiety, which can be overlooked.”

•“Girls tend to be less aggressive and intrusive.”

•“They seem to have fewer communication deficits.”

•“My daughter seems more sensitive, and she cries easier.”

•“I have yet to see a marked difference in the boys versus girls at my daughter’s preschool.”

What we do and don’t know about girls with ASDs

In this chapter, we will review what we know today about pervasive developmental disorders in girls. We will discuss issues related to:

•the difference in prevalence between males and females with ASDs

•differences in symptoms and clinical presentation

•diagnostic and treatment issues

•possible causes of sex differences

•sex differences in other disorders and in normal development.

Epidemiology and the puzzle of diagnostic rates

For those of you who did not major in epidemiology, it is the scientific study of the distribution and causes of conditions in human populations. Epidemiologists often examine prevalence (the total number of cases in a population at any given time) and incidence rates (the number of new occurrences of the condition in the population over a given time period). According to the United States Department of Health and Human Services Centers for Disease Control and Prevention, the prevalence rate for ASDs in February 2007 was 1 in 150, up from the previously published figure of 1 in 166 in January 2004. These figures differ significantly from the earliest estimates of rates of the disorder which were 4 or 5 in 10,000 individuals (Lotter 1966). It remains unclear as to whether the increase in classification of children as having an ASD is caused by a true increase in the disorder, or due to increased awareness of autism and its broad characteristics. Either way, more children are receiving a diagnosis today than ever before.

Even less well-understood than the true prevalence of ASDs is the difference in prevalence rates between boys and girls. Fombonne (1999, 2001) reviewed the literature on epidemiological studies of ASDs and noted that in well-conducted studies, overall sex ratios of the disorder (male:female) ranged from 2:1 to 16:1. The statistic that is most commonly reported in the mainstream literature is that ASDs are four times more common in males than in females (4:1). But does this statistic reflect a true ratio? And have studies been conducted that are designed to answer this question? Parents and some professionals have begun to question the 4:1 ratio, and to wonder whether other factors influence the numbers, such as research studies that include more boys than girls, the ability of current assessment tools to detect the disorder in girls, and different symptom presentations in males versus females. Additionally, the prevalence ratio may be different depending on the severity of the disorder. Attwood (1998) has suggested that whereas the 4:1 sex ratio may apply for individuals with “classic” autism, a 10:1 ratio observed in the clinic may be more accurate for Asperger’s Syndrome. Not a single study, however, has examined the sex ratio of individuals diagnosed with Asperger’s Syndrome, or as you move along the ASD continuum from “severely impaired” to “mildly affected”. The bottom line is that we understand far too little about girls with ASDs, and what may prevent them for being identified early and helped.

Same disorder, different faces? Sex differences in symptom presentation

Our girls [with ASD] really do seem different than autistic boys we know. For instance, the boys seem to hyperfocus on certain interests like trains, weather, etc. Our girls don’t do that at all. In fact, our 18-year-old can’t stand to be with her [male] aspie counterparts because they only talk about science and sports, or whatever their thing is. She wants to talk about relationships, art, music, and feelings. I think it all goes back to the typical differences between boys and girls. Since the girls are less likely to have these keen interests I think some doctors don’t catch their autism. (Mother of four daughters, oldest 18 with Asperger’s Syndrome, youngest 9 with classic autism)

My youngest has autism and although we had her evaluated a number of times…they would say “Well, she is too affectionate to have autism” even though she had so many of the characteristics. We did not get her diagnosis until she was six. I really wish that there was a scale that was more tailored to females for diagnosing autism. Girls are innately more affectionate and compassionate than males whether they have autism or not, and this is what keeps them from being properly diagnosed. (Mother of a 7-year-old girl with autism, diagnosed at age 6)

One of the reasons identifying girls with ASDs is difficult is that, as we are learning, their symptoms may be different from those of boys. Discussions in the published literature of sex differences or issues related to females with ASDs are, for the most part, limited to a small number of topics such as biology (genetics, brain imaging) and differences in symptoms or development (primarily as toddlers or in the preschool years). In the clinical world, therapists, educators, and women with ASDs have begun to speak up and make the autism field in general take notice. Despite the limited research, autobiographical, anecdotal, and clinical reports strongly suggest that observed sex differences are valid and deserve attention; this section summarizes some of the differences that have been observed.

Males with pervasive developmental disorders (PDDs) have generally been found to have higher IQ scores than females (e.g. Tsai and Beisler 1983), and have been considered to be “higher functioning” as a group, but few studies have examined differences in clinical presentation between males and females at the same general level of cognitive functioning. McLennan, Lord, and Schopler (1993) found that males with ...