Overlooked and Misunderstood: Autism and Girls By Debbie Lillo [email protected] 408-828-9434 1 Who am I? 2 WHO’S IN THE ROOM? WHY ARE YOU HERE? How many have experience with autism? How many are trying to apply this knowledge to a church classroom or ministry? How much time I spend on the beginning/ending of the workshop will depend on those answers 3 An overview of autism Unique characteristics of autism in girls Why so many girls are undiagnosed/misdiagnosed What we will Dangers of late diagnosis discuss What Aspergirls would want us to understand Resource In handout: tools for supporting autism in the classroom Since there are not other autism workshops, I’ve included basics from my “Autism and the Church” workshop and am happy to answer questions atfer/by email.This has been a fascinating preparation study for me. Until now I believed autism in girls was rare and had no idea how many women had gone through their life without an accurate diagnosis and the support that brings. Many of the women who have spoken out/written articles and books have Asperger's—they have high intellect and their autism symptoms are less severe. I know that officially Aspergers is now not considered a distinct diagnosis—rather it falls under the Autism umbrella. This research has caused me to really question the wisdom in that. For women especially, there is a significant difference. One of the qualities of Aspergirls—as one of my favorite authors on the subject has named herself and her peers—is that they can express themelves better in writing than in speaking. Therefor I had a surprisingly large number of articles and books to work through. I’ve chosen to focus on the ones written by women who have found themselves to a healthy place. Because of all of this writing, and because I’ve had the privilege of talking with several women on the spectrum, what I share today is based on first-hand disclosure. I feel good about it’s accuracy 4 Autism • A developmental disorder that appears in the first 3 years of life • affects development of behavior, communication and social skills. • Each individual is very unique. 5 Social Skills and Autism •Little eye contact. • Frustration with changes in routine. •Feels things should be done a certain way • Easily distracted or hyper- focused. 6 Verbal skills and Autism •Highly verbal to non-verbal. • Sometimes echolalic or fixated language. • Often unaware of give-and- take of language 7 “If you know a person with autism, you’ve know one person with autism.” Our friends on the Spectrum are one of a kind. Spans the IQ scale Introverts to extroverts Non-verbal to verbose Identical twins at church—manifests differently Keeps us on our toes, means that we need to get to know each individual well as we make accommodations. This drawing is from a wonderful written piece—Understanding the spectrum—a comic strip explanation. The author argues that everyone on the spectrum is good at some things and struggles with others. He writes, “Each person with autism will have a set of traits all in different areas of the spectrum. The areas where they don’t have a trait will function no differently than a neurotypical brain but may be affected by circumstances. While this is not a faith-based perspective it helps us focus on the uniqueness of all. God created each and every one of us uniquely with a purpose. WE cannot make across the board generalizations about those with autism, or down syndrome, or cp…. We can gain tools for adapting based on how their disability presents. It helps us see the creativity of God, and to remember that we are all appreciate when someone has taken the time to get to know us and teaches us with our strengths and learning styles in mind. 8 Visualizing Sensory Sensitivity Amazing things Happen autism film: https://www.youtube.com/watch?v=aisLvQIP9FE&t=255s 9 Autism affects 1 in 59 children Did you know? Significantly more boys than girls have autism 25 % are non-verbal Autism costs a family $60,000/yr Autism is the fastest growing developmental disability in the U.S. 1:59 is a 2018 figure The line in red is the reason for this talk. While there are undoubtedly more boys than girls on the spectrum, it is becoming clear that many girls just haven’t been diagnosed. The new DSM-5 (Diagnostic and Statistical Manual of Mental Disorders states “the male to female ratio of autism diagnosis is 4 to 1. This may reflect and under-diagnosis of autistic girls and women, particularly those without intellectual disability. This is perhaps because of subtler manifestation of social and communication difficulties in girls on the spectrum.” We will unpack this more!! The autism cost figure is from Autism Speaks 2018 10 Creativity and Imagination How does AS look in girls? For the next few slides we will look at characteristics I’ve heard about in 1:1 conversations or read about in first hand written accounts. While charts like the one I’ve attached generalize things for all girls on the spectrum, I’ve found that the true male-female differences are found among the girls less severely impacted by their autism—girls we used to say have Aspergers. For the sake of this talk, I am going to call them girls with AS or Aspergirls, as my favorite author has named her peers. (Show books) Most women on the spectrum have vivid imaginations and love to “collect” information. Quote Aspergirls pg 19: “Information gives our thoughts anchor, it gives us identity and is something we can control. We don’t have to charm it, take it to lunch or impress it. It is ours to do with what we will” They often have high intelligence but low social intelligence and may find that it’s easier to create a make-believe world then try to navigate a social world they do not understand. Aspergirls can lack executive planning skills—the ability to plan the steps necessary to complete a task Their intelligence is sometime described as fluid—they see order in confusion and see relationship between seemingly unrelated things. This can be confusing to their peers, teachers and families, and can lead to isolation. They often find expression and escape in writing, art and music. They are visual, so artistic skills come easily. Because they love and find security in imagination, they may play with dolls or toys beyond the typical age. Some describe themselves as forever young. 11 Special Interests How does AS look in girls? Special interests are very important to Aspergirls and research has found that women will succeed best when they find work, pastimes, friends with common interest….that are in line with these special interests. They can maintain passion and energy within their “wheelhouse” but can be depleted easily trying to focus their attention on things that are outside of their areas of passion. Each girl/woman is unique but there appear to be some very strong similarities between their areas of intense interest: As I mentioned earlier, they tend to love information. So many love facts and figures and/or bury themselves in classic literature. Animals are often a special interest. Probably because interaction with animals is more predictable and provide comfort. Aspergirls often love imaginative literature/play, so may fixate on faeries or mermaids. They may find a TV show or songs that tantilize their imaginations. Some fixate on fashion--often in an attempt to mimic the girls around them. Others find great comfort in expressing themselves in writing or art. Several of the women I heard from said that special interests serve as an escape—a place where interpersonal roles and customs are clear and controllable (This will be a recurring theme as we work through these sections) 12 Love of Routine/Sense of Justice How does AS look in girls? One of the predominant traits of my friends who have Aspergers—both male and female—is what I like to call a sense of justice. They have a very set idea of how things should be, what rules should be, what order things go in…..and will fight hard to argue for and maintain that order. The root of this sense of justice is a love of routine/order Aspergirls tend to have rigid routines and are very anxious with changes. They can have over the top reactions and emotions, especially over rules and issues of right/wrong. Rudy Simone explains that rituals and routines are an attempt to control and comfoft. She says they can also be a drive for righteousness and truth— an Aspergirl may not let you win if she’s sure you are wrong) An Aspergirl has no patience for semi-truth (“Let’s get together sometime”) If she says yes, she means yes. And she expects the same of you. Some sense of justice conversations can be explained by the fact that Aspergils tend to be literal thinkers. They don’t understand when people talk in slang or use body language to make a point. This confusing to others because Aspergirls tend to be bright. But it’s hard for her to be both honest and tactful. It’s important to allow an Aspergirl room for ritual and routine. Simone encourages loved ones to respect rituals but gradually stretch/challenge her. 13 Communication Challenges How does AS look in girls? Aspergirls tend to be much more aware of the need to interact verbally than their male peers and they may have an excellent vocabulary.