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. They may not fully understand the reciprocal nature of communication, but they are excellent mimics. So they learn scripted responses without truly listening or understanding the full meaning or expectation of what the other person has just said.
*Aspergirls often have challenges following verbal communication—they may not remember long lists of instructions and may need longer time to process what’s been said
They struggle with nonverbal communication—body language, facial expressions, etc, and are very literal. Like in the cartoon shown here, they imagine cats and dogs. They’d be equally perplexed by “keep your eye on the ball” or “bending over backwards” They often won’t notice a scolding look or frustrated body pose.
Nearly all of the women I read about or spoke with said that teen years are particularly challenging for Aspergirls who want badly to fit in and all described what is termed “selective mutism”. Rudy Simone describes this beautifully (read highlights on pg 69-71). “The feeling mutism gave me was one of deep embarrassment, shame and aliendation”
Simone ends each Aspergirls chapter with advice for parents and for Aspergiirls. In her communication chapter she susggests practicing conversation with someone who “gets you”
14 Social Challenges
How does AS look in girls?
This could be a whole workshop in and of itself! Everyone on the Spectrum struggles with the back and forth—reciprocal—aspect of relationships. Girls tend to desire friendship more than guys, but are anxious/fearful of making first move. They may appear excessively shy as a result. Many have an innocence—a younger than their age quality Undiagnosed Aspergirls are constantly asked to “get their act together” and become more like the norm An Aspergirl may overly focus on one all-encompassing best friend and may overwhelm that person or put unreasonable demands on them. She may not venture out without that safe friend. She finds it much easier to establish friendships than maintain them and may shift to make-believe. She sometimes likes to be “the boss” of younger children . She’s often bullied as she gets older. Bullying adds anxiety and some girls just shut down—don’t risk going out. “It’s hard to go out and have fun if you fear ridicule” Since Aspergirls don’t like mediocrity, they often speak in controlling or critical ways. Guys tend to withdraw when overwhelmed, these girls often dive in yelling “Let me fix it” in a blunt way that easily offends. They tend to overwhelm family members with the details of the day because their mind is reacing to keep up with all it had to process in the day. Some characterize this behavior as self-centered, which makes Aspergirls feel misunderstood. Because of isolation, online socializing/blogging has become very nurturing (read quote pg 100) If time: read social summary quote AG pg 102
15 Sensory Sensitivity
How does AS look in girls?
Asperger women have all of the sensory issues typical of autism. Their brains are wired in such a way that sounds are magnified, lights are more intense or distorted, touch feels different than it would for a neurotypical, smells can be overpowering. Some Aspergirls are sensory seekers, but most are sensory avoiders because sensory input is overwhelming. Sensory overload can cause extreme anxiety and meltdowns
Read 22 things page 27
There are therapies that can help our friends minimize their reactions to triggers. Every Aspergirl knows the calming techniques and “tools” that work best for her. Most well-adjusted Aspergirls will carry a sensory kitbag (that might include earplugs, headphones, lavender sachet, stress ball, hat, glove, glasses….anything she might need to cushion herself from the world.) A smartphone or computer nearby can help her shift to pursuing her special interests. Sometimes she counts on those who love her to help her find a space where she can self-regulate after she’s been overwhelmed by sensory input.
16 Anxiety/Self-Regulation
How does AS look in girls?
This topic is obviously closely tied to the social and sensory issues we just discussed.
As I spoke with Aspergirls and read Simone’s interviews with Aspergirls, this was the most consistent theme—Anxiety seems to always be part of the Aspergirl profile, no matter how well adjusted or highly affected she is by autism.
It takes a lot of work to navigate life as a girl/woman on the Spectrum. We’ve already discussed that Aspergirls are more aware of social expectation and their inability to fit in. They grow anxious when routine changes. There is an underlining self-esteem problem that is always in the background causing anxiety, especially in undiagnosed Aspergirls who are constantly being labeled as “noncompliant” or antisocial. They may feel guilt—which leads to anxiety—because they do not understand what they are being blamed for.
Sometimes anxiety can be poured out into active activities such as dance/exxercise class.
One Aspergirl admitted feeling throughout her life that “I should be doing better. I should be able to handle a job/relationship/life/whatever better than I am”
Girls—because they are aware of social pressure—sometimes learn to hide the stims/ techniques that calm them. A boy might jump up and down, flap his hands and make loud noises. A girl may wish to do those things, but may instead pick on her hand, tap her foot, sit on her hands….. Some girls even learn to use internalized thoughts or strategies instead of external behaviors to calm. Not stimming in some way, though, can build up pressure and lead to migraines and melt-downs.
17 Emotional Challenges/Overwhelm
How does AS look in girls?
Aspergils can be compassionate on the big things—rescuing animals, fighting for social justice…but seem cold or un-sypmatetic over everyday issues. They can express their underlying self better via written word, art or music
Aspergirls often have over-the-top reactions and emotions. They are less likely than their male peers to act out physically or aggressively, although I’ve talked to some who did have periods of explosive behavior. Especially in response to bullying.
This is one area where girls on the spectrum particularly get missed. When a boy has difficulty regulating his impulses he’s evaluated for autism or other disabilities. When a girl cannot regulate her impulses she’s thought to be non-compliant or a drama queen. In other words, having a behavior problem that can be corrected.
As with anyone on the spectrum, anxiety and overwhelm can build. Calming strategies are not always available to successful, and Aspergirls can find themselves in an emotional meltdown. As with any meltdown, this is not the time to discuss or analyze with your friend why she is so upset. It is a time to get her to a quiet place and give her the tools and space she needs to self-regulate. Meltdowns are not tantrums—she does not want anything but to escape the overwhelm. *Rudy Simone: “Depression meltdowns are like being in solitary confinement, in a dark, damp basement full of filth and spiders. They are like death, the loneliest place on oarth or the worst nightmare you’ve ever had come to life.”
18 Camouflage
Why is it easy to miss?
Sometimes autism is missed simply because female autism doesn’t look exactly like male autism: Special interests may be similar to peers (writing, animals, songs, TV art…) but it’s the intensity/factual knowledge that sets them apart; Lining up of figuring collection, dolls books in sequence….is much less conspicuous than lining up trucks or toys. ADOS scoring sheet doesn’t always pick up on the underlying behavior. There is a different cultural spin: We see a boy spinning we think of autism. Se see a girl and think ballerina
It seems, however, that the biggest explanation is that girls become excellent at masking—or camouflaging—their differences. Remember, girls tend to be more aware of what’s expected of them. They may learn to be bubbly and agreeable on the surface, even though anxiety and self-esteem issues are under the surface. An excellent article, “The costs of camouflaging autism” says that camouflaging is the difference between what’s happening inside and what appears on the outside” They learn to do what is expected, but that puts an incredible amount of stress and strain on them emotionally, mentally and physically. Because they develop a camelion nature—they often don’t have a clear sense of self and are struggling to find how to fit in. They may become confused about gender roles and related behavior. One woman reports, “I’m always putting on my best normal” Savy women learn to look between eyes instead of into, tap feet, chew gum, play with hair. As women become more secure in themselves, they will camouflage less. “Camouflaging is often a desperate and sometimes subconscious battle for survival
19 Many women aren’t diagnosed until adolescence or later Dangers of While some mental health issues are true misdiagnosis/ secondary issues, women describe living through late diagnosis many incorrect diagnoses and related meds Not understanding self and not being understood by others
Many women describe being able to “cope” with their differences until adolescence and then experiencing extreme anxiety and social shut down. Going into adolescence and adulthood with little “sense of self” make it challenging to have healthy views on sexuality and peer interactions.
Several women report not finding their diagnosis until their children are diagnosed, “She can’t have autism. She’s just like me”. Some find it through a savvy mental health professional treating them or through self-education.
In the meantime, many Aspergirls have walked through and been given medications for a variety of mental health challenges. In some cases the medicines actually worked against their autism needs.
When I asked a number of women in an online forum what it was like to finally get a diagnoses as an adult, she said being diagnosed at 45 was like “dropping a deck of cards on the floor—instead of falling in a pile, they fell into a house. Things that never made sense now had a category”
Some initially feel a bit of depression, but most say “now it makes sense!” A few add, though, “it may be a good thing for self-awareness and self-care but can carry an additional burden of labeling and a lower expectation from others.
20 Secondary Diagnoses
While many Aspergirls are mis-diagnosed with a variety of mental health disorders as their primary diagnosis, nearly all women with autism appear to struggle with anxiety and depression as secondary diagnosis.
Feeling isolated and misunderstood is depressing. Anxiety comes naturally from being bombarded with sensory overload and being bullied by those who don’t understand you. Wanting to fit in can cause many girls to worry about how they look. Sometimes these things are manageable, but loved ones need to be vigilant in helping Aspergirls get help if they become clinical.
Eating disorders: anorexia and bulimia are indicators of perfectionism—something Aspergerils are known to be. The more perfect, the more in control they feel. Aspergirls are at high risk for eating disorders. For an adolescent in particular, limiting eating makes her feel like she is controlling body changes.
They are also at risk for self-medicating in order to feel less anxiety/isolation.
In 22 Things…Simone suggests that if an Aspergirl takes more than a day or two to recover from a social upset or overload, she may be slipping into unhealthy habits or depression. She admits that it’s hard to know where AS ends and psychological problems begin but sums it up as “Anxiety is part and parcel to AS, but depression exists because there’s a problem in your life”
21 “Validation and Support can mean the difference between a painful existence and a life fully experienced” R. Simone I am bright and capable. I’m not broken. I just process the world uniquely. My sensory and social challenges are What very real. Aspergirls I want to be loved and accepted. would want Please help me to enjoy my interests in appropriate ways. us to know I need you to help me find ways to stay regulated and escape overwhelm. I need to you recognize and celebrate all that I have to offer.
1. 2.In Tracy Stewart’s article her daughter—after struggling with the diagnosis— concluded ”I think, in a weird way, I kind of love it now. I definitely feel like that’s who I am…I think completely different than other people and I kind of love that” 3. We’ve heard that Aspergirls have been told to “buck up”. They want us to understand that their sensory and social needs are very real and want us to value them despite those needs. 4. Friends and family may be the perfect ones to help an Aspergirl captitalize on her special interests. If she can find vocation or advocation within those interests she will thrive and will be best able to learn to compensate for her other challenges 5. We are also in the perfect position to help her find creative ways to pursue those interests on the phone or online when she has moments of overload. 6. Great quote in 22 Things pg 61 about how to help monitor overload
The last point says it all. I hope that this workshop has helped you to be in a position to encourage and celebrate the Aspergirls God puts in your path
22 Show all books/articles and walk through resource list and attachments
23 Show all books/articles and walk through resource list and attachments
24 Autism & Your Church
It’s one thing to understand autism. It’s another to begin to imagine its potential influence on the Church and to ask hard questions about the Church’s responsibility.
25 EXHAUSTED
GRIEVING ISOLATED Parents are uniquely FACING FAITH CRISIS
EXPERIENCING MARRIAGES IN JEOPARDY
Before the church can respond, it’s important for them to understand how disability affects the family. If time, read from Max pg.
26 John 9:1-3
When Jesus went along, He saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.”
27 The eye cannot say to the hand, “I do not need you! And the head cannot say to the feet, “I don’t need you.” To the contrary, those parts I Corinthians of the body that seem to be 12: 21-24 weaker are indispensable, and the parts that we think are less honorable, we treat with special honor … But God has put the body together, giving greater honor to the parts that lacked it..”
28 “Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame.” Biblical “Sir” the servant said, “what you ordered has been done, but Mandate there is still room” Then the master told his servant, “Go out to the roads and country lanes and make them come in, so that my house will be full.”
If the previous verse weren’t clear enough, Jesus tells us the Parable of the Great Banquet and reveals who he wants to fill his house: the poor, the crippled, the blind and the lame. Essentially, the poor and the disabled. If we are to be about Kingdom work, we must work with those God has invited to the Kingdom. So how do we include those with Autism? First, we must distinguish between Fact and Fiction.
29 MythMyth Fact
People with autism All people are capable cannot learn, of learning spiritually especially in a typical regardless of Myth Busters learning environment. disability.
“My body has autism, my spirit does not.” Jessica – young adult
There has been great success in education for people with autism that can be useful in the church setting.
A very harmful myth is that people with autism cannot learn and instead will distract other students from learning. The opposite is actually true. People with autism often take a heightened interest in a specific subject and learn everything about it. That 12 year old with autism could be your most apt pupil and wonder why the other pre- teen boys whisper, giggle and make jokes during Sunday School
LETS LOOK AT A FEW
30 Best Teaching Practices
Typical Lesson Adapted Lesson
Fishers of Men Fishers of Men Ask students to think Show students fishing Best about fishing poles and nets Teaching Explain how people fish Fish together in a bucket in Practiceswith nets the classroom Explain that Jesus wants Explain that Jesus want us us to fish for people to “catch” people with his Clarify we do that love and Word through relationships, Model how to “cast your not nets net” over a person in love
In a typical lesson, the students are expected to sit still, focus solely on the speaker and not respond until an appropriate time. In an adapted lesson, children are engaged physically, they focus on the visual and they respond as they learn.
31 Best Teaching Practices
Bible memory is a great discipline for any Christian, even those who are non-verbal, or who have communication impairments. By coupling phrases with pictures, anyone can understand the meaning of the Scripture and can put the verse into order.
32 Myth Busters Myth Fact
Because the person with Blocking out certain autism is not responding stimuli, like visual stimuli to me with eye contact through eye contact, or verbal cues, they are enables a person to not listening or focus on other stimuli, understanding. like what you are saying.
Show buddy bag Often times having a “fidget” toy is just what a child needs to help them concentrate on the important aspects of your teaching. It might seem like they are enthralled with their harry tangle jr., but you will be surprised by what they recall later! (Demonstrate various fidgets.) ball to sit on or a rocking chair squishy balls thin ribbon or tactile fabric in some cases something to chew on
33 Myth Busters
Myth Fact
People with autism With proper support, most cannot function in the people with autism can typical classroom, as thrive in the typical demonstrated by their classroom. atypical behavior. Atypical does not equal dangerous. Allow non- aggressive atypical behavior as benefits the student.
Proper support includes leaders and volunteers who are properly trained. It also includes effective behavior management and some very easy, key visual tools.
34 Tantrum Meltdown
Behavior Support
We have all thrown tantrums at some point because we did not get our way. This is a sin issue and a learning opportunity.
Meltdowns are what happens when a person with autism is completely overwhelmed by their environment. It is like when a computer crashes. You have to turn it off and wait for it to reboot before it can accept more information. A person experiencing a meltdown may not even remember it afterwards and they may not be cognizant of their actions during the meltdown.
Calmdown tools: DO provide a safe, calm, quiet environment and remove the offending stimuli or remove the person from the environment. DO NOT give them more stimuli by calling their name over and over loudly or trying to contain them (unless absolutely necessary from behind). DO determine the cause of the meltdown by identifying triggers right before the meltdown occurred. DO communicate with parents before and after meltdowns – they know their children best. Can’t vs. won’t---”I can’t regulate myself in that situation” vs. “No, I refuse to do what you said because I don’t want to do it”
35 36 37 38 • First-Then •Visual Schedule • Wait Card Visual • Parameters Support •Timers • Quiet Symbol are any pictures or visual items that enable clear communication between caregivers and children as well as children and others.
(Demonstrate each visual support.) These supports can easily be made through your own drawings, clip art, photographs and with a program called Boardmaker.
Visual schedules
Individual
Visual schedules are the single most important visual support for the majority of people with autism. Knowing what is going to happen, when and where is crucial to keeping anxiety at bay and staying engaged in the activity at hand.
Share the “First-Then” style of Schedule as well
40 Classroom Visual Schedule
Made with pictures and words Movable with Velcro or magnets Helpful to indicate what’s now and what’s next
41 FIRST-THEN
Wall charts With words or icons Apps
Breaking expectations down into bitsized bits—visual really helps. Then is usually something they are looking forward to. OR it’s just a way to know what’s coming Choice—when you give someone choice you give them control. For these kids, it feels like the world around them is out of control and that they have little way to control. So in some cases the kids can help decide upon the “then” In other cases, it’s a way to help them learn to wait for something they are looking forward to Tell SS stories—playground, mom coming home, bathroom breaks….
42 Visual Parameters
43 Timers • Desktop Timers • Activity Timers with colored sections • Countdown Apps •Disappearing Clocks
44 Social Story
Uses: • Introducing child to new class • Introducing transition times • Assisting with social interaction • Assisting with activities • Reinforcing teaching
45 Final Myth Buster
Myth Fact
It takes someone highly It takes someone with educated to teach or willing heart and hands minister to someone who has the love of with autism. Jesus to share.
46