Autism and Gender

It has been my experience since subbing as a teacher’s aide in autism classrooms that the number of boys to that of girls is lopsided. It’s not unusual to walk into such a classroom where there is one girl, if any, with a half a dozen or so male classmates. That’s the typical gender setup. I can’t recall being in an autism unit where the girls outnumbered the boy and certainly not an all-girl class.

In addition to the unequal number, there are differences in behavior. In the case of the class of one girl, the teacher, the other aide, and myself spent far more time keeping an eye on each of the five boys than the one girl who was on good behavior. Unlike the boys, she worked well on her own with little instruction or reminders. I could easily see her moving into the general ed population but the boys? Hopefully, they will, but they have more hurdles to conquer and I pray they will.

I suspect as many others do that girls are harder to diagnose because they seem to behave in ways that are considered acceptable as opposed to boys. For example, girls appear to be passive, withdrawn, uninvolved, or even depressed. They may become passionately and even obsessively interested in a specific area just as the boys, but generally speaking, fewer girls have a passion for technology or math.

Girls with autism are less likely to behave aggressively than boys. I can certainly attest to that on my job. I’ve witnessed girls having meltdowns, but few and far between as compared to boys. I look back at my own childhood and I wasn’t aggressive in the school classroom, but I definitely had bouts of aggression at home. I usually took it out on my poor siblings or items I could toss like my beaten pillow. I will steer away from confrontation like a deer would with a hunter in its territory. In other words, it takes a lot before I’m backed into a corner and my aggressiveness comes out.

Girls are more likely to choose interests (such as TV stars or music) that appear more typical than, for example, many boys’ perseverative interests in schedules, statistics, or transportation. Again, I know that all too well. I was obsessed back in the day with teen music stars.

While boys’ social communication issues become challenging very early in their lives, girls may be able to manage the social demands of early childhood but run into difficulties as they enter early adolescence. This was the way it was with me. I recall being sociable in 1st grade but by middle school, I was more or less socially disabled.

Research suggests that autism may look quite different in girls—so different, in fact, that it can be difficult to diagnose. I was in the dark about my having autism until the age of 58.  My story is a similar one to that of many women, men as well, who found out well beyond childhood of their autism companion for life.

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How Does One Know They Are Having an Autism Meltdown?

Of all the symptoms I deal with living on the Spectrum, the meltdowns are the toughest. They are the volcanoes. Sometimes they just produce a rumble; but oh, my goodness, there are those that spew out lava (aka tears).

I don’t always know what the trigger is. Before I learned I was on the Spectrum, I used to have peculiar and frightening meltdowns at night. This went on for many years and I didn’t know what was behind them. They would come on me suddenly and overwhelm me.  I know this sounds strange but it felt as if the bed pillows and sheets were conspiring against me. I would get up out of frustration and throw the pillow down as if it was my attacker.  I’d throw the sheet/bed cover on the floor as if it was my worst enemy. The picture that came to mind was behaving like a cat with its tail caught underneath a rocking chair.

After this happened enough times, I knew it was something I had no control over and I just had to “rock” my way through it. The rocking was “stimming” but I didn’t know what stimming was at the time. As surely as it came over me, it left me after minutes passed. The minutes, however, seemed much longer than that. Fortunately, I haven’t had one of those in a couple of years.  The last one was before I started taking my antidepressant medication which has tremendously helped me to the point that I don’t dread nighttime like I used to.

However, I do still have “daytime” meltdowns. Those haven’t stopped paying me visits. Sometimes they come upon me without any obvious trigger, but most of the time there is one. It can be a sound or smell that rises the tension in my body. It may be a pet peeve and my reaction is way out of bounds with it. If I can walk away from the annoyance, the odds improve of a lighter meltdown or not having one. If I can’t, it’ll be Mount St. Helens all over again.

No High IQ Here

I often see the question on a question/answer website:

Are people with Aspergers always higher intelligence? Can they be average too?

Those with Asperger’s Syndrome (AS) must by definition have suffered no cognitive delay during their first 3 years of life.  This means they will usually have at least a “normal” IQ. In some cases, their IQ may be very high, even in the genius range. There are, however, different kinds of smarts.

Dr. Barbara Lavi, a clinical psychologist from University of Massachusetts, states that the IQ of people with AS is by definition at least average (90-109). It may be even higher. There is a lot of variation between various subsections of IQ test. So in some areas those with AS may be above average while on others below average IQ.

I have Asperger’s Syndrome (AS) but I don’t have a high IQ to match.  I made good grades in school and often made it on the honor roll. But if I had been graded on my social skills, I would have flunked. One’s IQ can go through the roof but one can still have an impaired ability to read the social world, so much so that one struggles to navigate the social mine fields in school, workplace, or community.

Now I am thankful to have a normal IQ. It is a gift, permitting me to learn and pursue the upmost of my intellectual ability, to rejoice in the pursuit of some realm of knowledge. I have enjoyed achievement in both school and my career.  I am also thankful to be currently working in my hometown school district where I often assist students who have similar challenges as I have. My areas of strength have helped me to cope with AS by giving me ways to compensate for my areas of weakness.  For instance, I was miserable at answering phones or working with the public, but I delighted in the task of working with metadata.

Having an average or high IQ can be a double-edged sword for us with AS. It is both a gift and a curse. Even with my being popular with my school teacher’s, I was not with my peers. I had and still do have a difficult time making friends. My 20’s was a turbulent decade of moving from one job to another until I finally landed a job that matched my skills. We tend to be more prone to depression and despair than a less aware person with a lower IQ. It has indeed been found that children with both high-functioning autism and Asperger’s suffer from depression and anxiety more than their typical peers.

One of the biggest challenges for me and others with Asperger’s is to convey the true extent of our challenges to others, to counter the instant assumption that “high IQ” equates with no syndrome. Many of those with AS are socially-emotionally far behind their chronological age, and may seem, despite intellectual achievements, very young, naïve, and unaware of the complexities of social reality. They are not intellectually, but socially, at a disadvantage. I just say I have a social deficit. I get along better with the children of millennials than millennials and my fellow baby-boomers.

I work with children who have learning and behavior disabilities in addition to autism. Helping them helps me. Although AS can be a pain sometimes, I don’t feel like complaining when spending time with these students, some of whom haven’t yet said their first word.

Special Interests

According to the DSM-IV diagnostic criteria for Asperger’s Syndrome (AS), having an “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus” is a core symptom of AS.

That’s a mouthful!  In plain English, they are unusually strong interests. They’re obsessions. We think about them day and night. We can focus on them for hours, forgetting everything around us.  Personally, I really, really like mine!

A special interest can be anything from reading to a preoccupation with a whole host of things such as sharks, automobiles, vacuums (a former vac collection owner myself), etc.  I worked with a student whose special interest was calendars.  During choice time, he would bypass the games and I-pads for the box of calendars the teacher saved for him. 

It can be a broad focus such as dancing, or be narrowly focused on only one particular type of dancing.  They appear to be the same as people’s hobbies.  But what makes it a “special interest” in the autism criteria is the focus and intensity.  When it affects every aspect of one’s life, or is sought after with strong intensity to the exclusion of everything else, it is considered a “special interest”. 

My “special interest” when I was growing up was soap operas.  I spent most of my winter, spring, and summer school breaks in soap opera land consuming hours of soap sitting on my couch potato.  I recall once having a meltdown because I had to miss a critical episode of my favorite soap.  We were to visit relatives and socializing was my least favorite thing to do.  You’d have thought the world was coming to an end with the way I was carrying on shedding buckets of tears.  

Overall I think most of us view them as a positive thing.  Electronic gadgets, such as computers, tablets, voice-activated assistants, smart phones/watches, and virtual reality glasses is one of my special interests I have long held.  Shopping for and getting absorbed in my gadgets recharges my batteries. If I feel one of those awful meltdowns is coming on, sometimes spending quality time with one or more of my gadgets will help me avert one.  Sometimes, that is.

 

specialinterests

Another aspect of autism related to special interests is the monologue.  I am high as a kite when someone asks, for instance, about any of my latest gadget buys.  I dare say more thrilled than the one who asked me.  The person was NOT asking for a 60 minute commercial.  I may not notice that the person is disinterested. If I do, I will reluctantly end my monologue apologizing for overtaxing the person’s ears.

Special interests are specific to the autism spectrum. Not all Autistic people have them but I think most do. Some people have one special interest while others have multiple. Some people have the same special interest(s) throughout their entire life while some people’s change over time.

While most special interests are “harmless,” if an interest involves behavior that is illegal, taboo or a threat to your or someone else’s health or wellbeing, it may be necessary to seek help in redirecting your attention to a safer alternative. 

I have to curve one of mine down myself!  My obsession with exercise began when I added to my gadget collection a smart watch that counts my steps among other things.  Once I got in the routine of stepping up my step count, I over did it!  So much so it has taken a toll on my health.  I’m the only patient my doctor has instructed to “let up on exercise”.  So I am making a good pitched effort to cut down on exercising which I know sounds strange.  Well, they don’t call it AS for nothing.  I am different from neurotypicals, no doubt, but not less.  

 

 

Short Timers

I was asked for my opinion of why many of us who live on the Autism Spectrum do not stay on a job for the long term.  I have often repeated in my blogs of a nugget of Autism wisdom:  if you’ve met one with Autism, you’ve met only one.  There are short time job keepers who do not live on the Spectrum; whereas, there are those on the Spectrum who have spent their entire years in the workforce at one place.

I don’t know the statistics for what is the average job length for those who have Autism Spectrum Disorder (ASD). I was a job hopper in my 20’s.  So much so that I consider that decade as being my turbulent years.  Whenever I am wishing I didn’t have as many birthdays to celebrate compared to my younger counterparts, I think of that decade and decide I’d rather keep my near-60 status.

Stability came when I finally landed a job in my hometown’s police department where I stayed for five years which at the time was a record for me. The reason was I landed in a job where my strengths matched the job.

I believe there is a strong connection between my strengths and weaknesses with my ASD. My tendency to hone in on details instead of the big picture was an asset to my once held favorite job as a library cataloger.  I held that job for 10 years.  My favorite job when working for the federal government was that of a records analyst. Both jobs were detail-oriented that didn’t require as much social interaction as other jobs. I still fondly recall the one who taught me cataloging telling me, “You’re a natural.”

There are jobs I wish I could delete from my memory like I do computer files.  My ASD diagnosis reveals why I hated those jobs.  For example, I held a job in retail and I lasted only three months before they laid me off after Christmas.  In truth, it being laid off was an after-Christmas present because I was so awkward at it.  It required a lot of social interaction and being quick on my feet with customer’s questions and service. It’s not that I don’t like people. I am not anti-human.  It’s just I don’t like being around them much.

As a substitute teacher’s aide, I am around people, staff and students, all day long.  But there’s compensation.  I have the privilege of often working with children who are growing up on the same Spectrum that I travel on too.

The Self-Talk

In early December 2016, a 12-year-old girl caught my attention in an autism unit class where I was subbing for one of the aides. The student was doing the “self-talk” in the middle of the classroom. She paced the floor while doing it and a few times skipped across the room.  Although I couldn’t make out what she was saying to herself, I knew it was possibly a story with a cast of characters and dialogue was unfolding in her mind.

Watching the child that day was a life-changing moment. It was the light bulb that led me to my own Autism Spectrum Disorder (ASD) diagnosis.  The difference between me and the child is I know there are places and times that I should not do the self-talk. I try not to do it in public but it wouldn’t be unusual, for instance, to be caught talking to myself while taking a walk in the park. If there were a video camera in my bedroom, one would see a lot of me doing the self-talk. I reckon if I saw myself on camera, I would be “weird” to me.

The following are some questions I’ve been asked and my answers.

Is talking to oneself stimming?

I don’t think talking to oneself is stimming since by definition stimming is repetitive movement. Sometimes when I am doing the self-talk, I am pacing back and forth. I especially did this as a child when I would go outside to the side of the house and pace; or do so in my bedroom. The pacing is repetitive movement or stimming. So I sometimes stim while doing the self-talk but not always.

How important is self-talk to me?

Well, to ask me to stop doing it would be like telling me not to breathe. It isn’t going to happen! Even if I made an effort to stop, I predict I would fail at every attempt. It’s not really a choice. It’s just something I do living on the Spectrum.

How do you deal with an autistic person who talks to themselves?

Respect what they do as being something they just do. If they are doing it in an unsafe place or situation, then that’s different. But if not, just leave them be. And above all, don’t think they are crazy. It is just what we do and more likely than not, it isn’t something we outgrow. If I should live to be 80 or more, I’ll still be a talker to myself. Some of my best conversations are with me, myself, and I.

 

The Mystery of Compassion on the Spectrum

Someone on the Autism Spectrum asked me: Can people with Asperger ‘s feel compassion? I have the impression that I can’t.

This was a question I had been dwelling on pretty much since I learned I had Asperger’s Syndrome a year ago. I responded to the question saying to my fellow “Aspie” that it is a mystery to me as to the moments I feel compassion and those I don’t.

There are times I hear a story or see one on the news or witness one in person that pulls at my heartstrings. But yet, when one would expect me to shed a bucket of tears I do not. If I could turn on the tears at will, they would be fake.

Years before I learned I was living on the Spectrum, I worked with a colleague who had a son diagnosed with Autism. When my co-worker’s Dad passed away, his son, who I believe was around 10 at the time, told his Grandmother he just couldn’t feel sad, or cry, about his Grandfather.  The Grandmother, knowing of her grandson’s autism, knew the child was being blatantly honest, but it still took a swipe at her heart.

I remember feeling stunned and sad at the time that this boy did not experience grief. However, if I had taken an in-depth look at my own past experiences with death, such as my own grandparents, I would have had a clue then that maybe I was autistic myself. If I had known then what I know now, I could have told my colleague I understood where his son was coming from.

I have a friend who lost her husband years ago. I cannot understand her going to visit his grave as often as she does. I don’t judge her. She’s not doing anything wrong. I haven’t ever married and so how could I understand losing a spouse. I care about my friend but I just can’t feel as her family and other friends do as far as having compassion and understanding for her ongoing grieving.

It seems I have more compassion for those in my outer circle than in my inner circle. I have gotten more teary-eyed over the death of someone’s pet than a relative or family friend. I don’t have an answer as to why I shed tears or why I don’t. I just have to accept it as something I can’t change. I am capable of caring; of compassion; it’s just in some situations I can and others it just isn’t there. I wish I had a sincere “compassion button”.  Then I could just turn it on and off, but there’s no such button.

 

Autism and its Invisible Females

As a woman with Asperger’s, I relate to the belief that women on the autism spectrum are invisible.

In my job as a substitute teacher’s aide, I am often assigned to autism units. It didn’t take me long to realize that the overwhelming majority of students in these classes are male. Their behaviors are usually more visible than the few female students there are.

As to the question of why are men more likely than women to have autistic traits, or receive a diagnosis of autism, Professor Simon Baron-Cohen, director of the Autism Research Centre who, along with PhD student Emily Ruzich, led the Cambridge/Channel 4 study. They found there’s a lot of research showing that testosterone changes brain development.

Males on average produce more testosterone than females, even when in the womb, and the data shows that children with autism on average have higher levels of the hormone than typically developing kids.

This backs up a 2009 study that looked into the prenatal testosterone levels of typical four-year-olds. “The higher the child’s prenatal testosterone, the more autistic traits they had,” says Professor Baron-Cohen.

These findings suggest the critical factor may be hormone levels rather than gender and could be pivotal to further understand the higher rates of autism diagnosis in men. But, as Professor Baron-Cohen points out, “It’s only one piece of the puzzle.” He adds: “The nature of science means one new finding opens up a hundred new questions.”

Wendy Lawson, author of “Build Your Own Life: A Self-Help Guide For Individuals With Asperger Syndrome” and a self-described autistic woman, believes girls on the spectrum may be underdiagnosed because if they have obsessive interests (often a feature of spectrum disorders), these are more likely to be socially acceptable than the obsessions of boys with autism. Girls, she says, might get into reading or animals, which seem normal, “so people don’t pick up on our social difficulties.”

Jennifer McIlwee Myers, who has Asperger’s and is the author of “How to Teach Life Skills to Kids with Autism or Asperger’s,” concurs. She says boys on the spectrum are more likely to respond to their difficulties with anger and aggression, while girls are more likely to “deal with issues quietly,” cultivating extreme “niceness” and imitating other girls’ behavior. Boys who have the vision problems that sometimes go with autism spectrum disorders may hit other boys, she explains, while girls might instead cling to other girls. And a boy who attacks other kids is going to get intervention a lot faster than a girl who cries quietly every day. Myers says there are “a lot of invisible girls” who are autistic but never get help because nobody notices.

I personally didn’t realize how I try to act like other people until I learned I was on the spectrum. I act “normal” to avoid making people mad and not being singled out as different.  Females on the autism spectrum may just be better at imitating neurotypicals than our male counterparts.  And that imitation makes us invisible.

 

My Bigger Perspective

I’m fortunate to have a job where I work with teachers who teach children with an Autism Spectrum Disorder (ASD) and with the students themselves. I have a teacher’s empathetic ear to my own ups and downs of living on the Spectrum. The students with ASD are my fellow Spectrum travelers. Helping students whether they are in general or special education is therapeutic. The icing on the cake is I earn a paycheck and receive therapy at the same time.

It is always a treat to have an assignment at the school where I initially suspected I had ASD. The specific behavior of one of the students was the light bulb that led me to my diagnosis near the end of 2016.  Seeing her reminds me of the impact she unknowingly had on me.  She can’t hold a conversation but she does know me by sight. To say she is special is an understatement.

One of my assignments at this school took me from classroom to classroom working with special ed students who attend general ed classrooms. I spent a little time with a 4th grader who needed assistance with getting around. She can’t use stairs and so one of my chores was to escort her up and down the elevator. She is so determined to be independent! I think she could have operated the elevator with her eyes closed since she has to use it so much.

One of the staff has the job of taking special ed students out of their classroom and holding one-on-one or small group sessions. We had a couple of conversations about ASD since her son was diagnosed at a young age of having ASD. I told her of my own ASD behaviors/obsessions and I didn’t tell her anything that surprised her. My behavior and that of her son was more alike than different. She cited examples of her son’s traits/obsessions and it sounded all so familiar. I was uplifted by this conversation. I could talk to this lady for hours but when it was time to sign out and go home, I did since I had to stick to my routine. The teacher did say something that I took with me and inscribed in my heart:

“I have the perspective of a parent with a child who has Asperger’s. I have the perspective of a sibling who grew up with a brother who has severe Autism. I teach children who are on the Spectrum. But you have a bigger perspective. It is your life!”

I understood what the teacher said about it being my life. It affects every aspect of it. If I could somehow even for a short time separate myself from my ASD, I don’t know who I’d be but it sure wouldn’t be me.

Just a Little Talk

I have a relative who has to wear a heart monitor. She has to wear it until her heart’s beat gets back up to speed. Her sister suggested a nickname for the monitor that did its job but was a nuisance to put on, wear, and take off. She adopted the nickname and called her monitor “PITA”. It stands for pain in the … you know where. She is looking forward to the day when the doctor will relieve her of her “PITA”.
I understand giving a temporary or constant companion a nickname. I gave my car, a Toyota Prius, the nickname of “Pree”. I recall after buying a brand new Prius, a guy made fun of my giving my new set of wheels a nickname. I suspect he was just jealous of my Pree. Most of the time Pree is in my good graces. I particularly am grateful to her for correcting my mistakes when I am off in my own world. Such as she will beep when I try to lock her car door while she is still running.
Months after being formally introduced to my constant companion of my autism spectrum disorder (ASD), I gave it the name of Billy. It may sound strange but by giving it a name helped me feel as if I had just a tad more control of it. Whenever my ASD slaps me in the face with its sometimes overwhelming presence, I just say to myself, “It’s just Billy.”
One of those slaps was when I was in a small group gathering. What is small to me? Three or more people. I went off to my corner and did my own thing. Then, a few unexpected guests arrived, one of whom was a sight for sore eyes. I seldom get to see this young man who is a gentle soul. He’s one of the few men I know I gladly accept a hug from.
They all went to the table to another room to chat but he came back out and asked me how my job was going. That’s all it took to get me to talk. I entertained him with a couple of my school job’s “out of the mouth of babes” tales. I did what I seldom do and told him about my gadgets (home assistant speakers): Echo Dot, Echo Show, and Google Home. If he thought it was obsessive for having three, he didn’t show it. If he was bored with my monolog, he didn’t act like it with his questions. I just might have sold him on the idea of having one himself, but just one. I’m the one with the gadget obsession.
He was called back to join the gang. I had just a short one-on-one with him but those few minutes were precious. I had no desire whatsoever to join the group, but it was a pleasure for me to have just a little talk with one of the sweetest young men I know.