Author: snort262

A few days ago a friend approached me with an interesting question.  Her son is on the spectrum and she wondered if he had children, if they would be on the spectrum, too. I told her I would do some research (my favorite thing) and get back to her.  Providing her with any useful information proved harder than I had thought.  My first stop was checking out the websites of the CDC and NIH.  They gave the generic definition of autism, and said that in boys autism occurs in 1 out of 59 births, and in girls 1 out of 159 births.   Boys are four times more likely to be diagnosed. Immediately, I was disappointed.  These were old statistics.  The male ratio might be correct, but the female ratio is grossly wrong.  Talk to almost any autistic woman and they will generally tell you that they spent most of their early years masking, they may have gotten diagnosed much later in life (I was 46) and have a slew of other diagnoses that may or may not be incorrect.  The tests used to measure autism are set up to measure males, not females.  So, despite my disappointment, I soldiered forward.  I wanted to know what the chances were that if one parent had autism, what are the chances that the children would also be on the spectrum.  Even more interestingly, I wanted to know what the odds were of having an autistic child if BOTH parents are autistic.  If found….nothing.  Absolutely nothing.  The bulk of information was on early identification in males and early intervention.  There was no information on late diagnosed women or men.  I don’t know if this is because there is no interest in this area, or if the CDC and NIH are so cash strapped they simply can’t fund the studies.

Since these two sites provided me with crickets, I looked in other areas.  Modern Psychiatry gave me some tidbits.  A recent article claimed that  “ASD rates were highest when the father was aged 35-44 and his partner was more than ten years younger.”  This perked up my ears.  Robert was 42 when Boo Bear was born, I was 31.  He was 44 when Mouse was born, I was 33.  Boo was diagnosed at age 2, Mouse at age 14.  (Remember what I said in an early blog about girls flying under the radar? Mouse and I are both really good at that.)  The article went on to say that about 50 percent of people with ASD also have a developmental delay.  Neither Mouse nor Robert have a DD.  Boo definitely does.  I am known as what is “twice exceptional”.  I am gifted in some areas and severely delayed in others.  Though I soared through graduate school, I cannot do math above a sixth grade level.  Though my verbal skills are off the chart, I cannot even manage basic algebra.

Quora also chimed in.  ” Is the risk that children of autistic people will be autistic too?”

“The simple answer is yes.  Although the geneology of autism is complex and far from being solved , there is great suggestion from studies undertaken that autism is hereditary.”  In a 2017 study it was found that ASD is 33 percent more hereditary than thought.  They estimated that around 83 percent of cases where a child was diagnosed, others in the family qualified under diagnostic criteria, too.  , Many female adult autistics with whom I have spoken said that their diagnosis came after their child’s diagnosis.  Many of us, myself included, did not recognize autism in our daughters because their behavior was so similar to ours that we did not think that anything was out of the ordinary.  Often, it takes someone completely outside the family circle to realize that something is different.

The last study that I found was published June 18, 2019 in JAMA Psychiatry.  “Among families in which both parents scored highly on a test of autistic traits had an 85 percent increase of autism in their children.  And among families in which one parent had a high score, the risk rose by 52 percent, compared with families in which parents had lower scores.”

So, in answer to my friend’s question, yes there is a risk of an autistic parent having an autistic child.  Chances are lower if the father is young and if the mother and father are closer in age.  But, basically what my delving about on the Web showed me was there are not enough studies, particularly in this country.  All the resources seem to pour into early childhood intervention.  No one seems to care what happens when these children grow up.  Darker forces, like Autism Speaks, talk about Autism like an epidemic that must be “wiped out”.  Frankly, I think Autism Speaks is a money loving organization that portrays Autism as the Boogey Man.  I don’t believe Autism is on the rise and certainly do not see it as an epidemic.  Autistics have always been around.  We may have gotten different labels, thrown in institutions, or just thought of as eccentric, but we did not just suddenly appear in the last two or three decades.

People who are Nosey Parkers have asked me if I knew I was autistic before I had children, would I have had children in the first place?  The answer is twofold: One, it is none of your d–n business, and two, yes I would.  Boo and Mouse are the lights of my life.  I cannot imagine the world without them.  They are both amazing kids with their own remarkable skill sets.  One is highly verbal, one never says a word.  Autism Speaks says that they should be eliminated, or at least have ABA drilled into their heads so they do not appear to be so (gasp!) autistic.  I am calling BS on this narrative.  Autism is not an  epidemic.  Autistics are a force to be reckoned with.  We should not be subjected to ABA so that we can pass as neurotypical at the danger of our own mental well being.  Like everyone else, we are born, we live, we learn, we love, we eventually die.  We are not a threat.  As Temple Grandin says, if there were not autistic people who saw the world in an unique way, we could still be living the life of the cave man.  Stim on, my friends.

Though Autism awareness is on the upswing, there are still many folks, particularly women, who fly beneath the radar and never get diagnosed.  Often, it is because we are so good at “masking” and acting in socially acceptable ways, that no one, including our doctors or parents, suspect a thing.  We may be seen as a little quirky, or odd, but that is it.  The other day I ran across a list of less commonly talked about Autistic traits and I wanted to share them.  So, without further ado:

• Poor or abnormal posture
• Trouble with directions or being able to tell left from right
• Disinterest in sports or physical activities
• Rituals with no outcome
• Large or unique vocabulary
• Lack of organization
• Intense compassion or empathy
• Intense anger or no anger at all
• Connections with animals
• Difficulty understanding pop culture, styles, trends, etc.

I read this list to Mouse and to her friend and we resonated with all of these characteristics.  Mouse has good posture.  Though I have really been working on my posture the last few years, I tend to slouch.  Mostly, this is from a lifetime of trying to blend into the woodwork.  For the life of me, I cannot figure out directions, read a map, or tell my left hand from my right.  Until I was in my teens, I had no interest in sports.  Even now, the sports that I do are mostly individual and solitary. I can’t speak for Mouse on this one, but I have multiple rituals that I do which I find soothing, but serve no real purpose.  Since both Mouse and I have been able to talk, we have had huge vocabularies and read voraciously.  Over the years I have gotten more organized but it is still a struggle.  Mouse and her friend also resonated on this point.  All three of us have intense compassion or empathy, but often have trouble expressing it.  Though I have a fairly long fuse, my anger, when it gets going, can be formidable.  Both the girls and I connect deeply with animals and mostly prefer them to people.  As for the final one, I never have had or will have any understanding of trends or pop culture.  I go to the movies maybe once a year.  I don’t understand most memes.  I choose my clothes on the basis of comfort and deep pockets, not looks.

I liked this list and mean to share it with many people.  I urge my readers to do the same.  Autism is not something that is scary or needs a cure. Autism is not a bug in the system, it is just a different operating system.  Peace out, y’all.

I had an odd dream last night.  I often about dream about my children, and when they were little I had a recurring dream in which Boo Bear could speak.  This dreams always delighted me at the time, made me so happy, until I woke up feeling bitter sweet.  I have not had such dreams in years, until last night.  In the dream, Boo Bear was speaking in clear, concise sentences.  We chatted about a number of things, that were not that important, but still filled me with joy.  In this dream I was puzzled as I could not see his face.  I am used to him not making eye contact, but not being able to see his face was weird.  In the end he turned to me and I realized that the speaker was not Boo Bear at all!  It was a sturdy looking child with blond curly hair and no glasses.  Anyone who knows Boo knows that this just does not fit.  Then, I woke up. Unlike the dreams I had when he was little, this dream was not bitter sweet.  I am no longer torn to pieces over the fact that my son does not use his lips to communicate.  He uses so much more.  He can sign, he can gesture, he can use his Ipad for any number of things. He can roll his eyes at his parents and give his sister a magnificent side eye.  Boo can express his needs and opinions just fine, without saying a word.

When discussing kiddos who do not speak people often use the terms non verbal or pre verbal.  Pre verbal sounds a bit more hopeful, as if the skill just has not manifested yet.  It can be a good description for a toddler.  Pre verbal is not such a good description for a 17 year old male.  Non verbal, as a description, does not really work either.  The Ipad says quite a lot for Boo.  The other morning he woke up with pasta on his mind.  His first request of the day was to go to Noodles and Company and have pasta prima vera.  Noodles is not open at eight in the morning, so I told him we would just have to wait until lunch time.  He continued his requests throughout the morning until we finally got in the car and drove to the restaurant of his choice.  He walked in the door and without a pause set his iPad on the counter and requested a bowl of pasta prima vera. This does not strike me as non verbal.  He knew exactly what he wanted and how to get it.  When the dish of noodles arrived he ate it with great relish.

So, how do I describe my son?  If I just say he is autistic people immediately want to know if he is high or low functioning.  If I say he is non verbal people act like this is a tragedy. But, Boo is not a tragic figure.  He laughs often and loudly. He loves to go for walks, to the pool, to Lynx games and out to dinner.  He spins in his swing and hoots with glee.  Obviously, he is not wasting any time feeling sorry for himself.  So, neither do I.  I don’t think he wants to be described as high function or low function or pre verbal or non verbal any more than I do.  If you want to get his attention, I would suggest calling him by his name.  If you sweeten the deal with a promise to a trip to Dairy Queen, you will probably get a smile.  Enough said.

A few weeks ago I wrote about Boo Bear and his Special Olympics track meet.  He really enjoyed it and we were sad to see the track season end.  Shortly after, I saw an advertisement for a fun run/walk to raise money for Parkinson’s research. This is an area near and dear to my heart, so without further ado, I signed Boo Bear, myself and his wonderful PCA, A, up for the race.  With the help of our lovely followers, thank you, thank you, we raised over $300, all of which will go straight to research to help combat this horrible disease.

Race day dawned clear and warm.  We found ourselves at Harriet Island with a herd of others runner and walkers, most of which wore shirts either in honor or memorial of a person whom they loved.  The course was a simple, flat, out and back loop.  The runners took off with the gun and the walkers happily ambled along.  Boo Bear, not being in a competitive mood that day, was a happy ambler.  About 50 minutes later we reached the finish line, finishing hand in hand with smiles on our faces. Mr. Boo was happy to discover volunteers who would shower him with potato chips, water, and praise.  It was a good morning.

The run was not yet over for the weekend. The next evening we had family tickets to a Lynx game.  Boo Bear loves to watch basketball games, from professional WNBA games to pickup games at the Y.  The noise and crowds did not bother him a bit.  He happily watched the game, stimmed with his Ipad, and munched nachos.

It is easy to conclude that for Boo Bear, it is summer time and the living is easy.  He finished ESY with flying colors, and is on target or has met his goals and objectives.  Though few things make him happier than seeing the yellow school bus pull up in the morning, he is now happy to sleep in rather than get up at 7:30.  Once he is up he enjoys trips to local eateries, long walks, playing on his swing and trips to the Y.  He is a pretty easy kid to please.  Right now he is sleeping the sleep of the just. Soon he will wake up and we will begin a new day of adventures.  Thanks for following us and thank you for your donations to Parkinson’s research.

Mr. Boo, you have grown and matured in ways that almost defy description this summer, and it is only early July.  Though you are very sleepy every morning, you still are happy to greet the yellow school bus as it chugs onto our block.  You hop on board without a backward glance.  When you come home, we walk for miles, exploring the neighborhood, the parks, the mall.  We watch the baby birds and bunnies grow up around us, laugh at kids playing in the sprinkler, and in general, have a good time. Sometimes, we go to the Y to walk laps or swim.  You love to watch the pickup basketball games.  You are so easy to please.  A trip to Subway delights you.  A twenty five cent gumball almost puts you into rapture.  A small price to pay for your happiness.

Friday is your last day of summer school.  Now, you will officially become a senior!  It seems like only yesterday that you started your school career at Bridge View.  I can never express my deep thanks and gratitude to the amazing staff that works there.  You won’t go far away when you graduate, just across the parking lot to Focus Beyond, where you will have another three years of adventures and milestones.

This weekend we have a new adventure.  You, Alissa, and I are participating in a 5km run/walk to raise money for Parkinson’s research.  I am going to run the race, then loop back to find you and Alissa, and then walk you in.  This will be different than Special Olympics, but I think you will find it to be just as fun.  If you like this, there are may more races to do for good causes.  I am delighted to get to share this part of my life with you.

There is so much I want to tell you Mr. Boo, but I hardly have the words.  You make my life complete.  You make our family complete.  You will always be my one and only Boo Bear.  Love, Mom.

Boo Bear and I spent last weekend at the State track and field event for Special Olympics.  He did very well, bringing home a fourth place in the 100 meter walk, a second place in the 25 meter walk and a gold in the 400 meter walk.  It was at the beginning of the 400 meter walk that I learned the marvelous phrase, “Semper Gumby”.  The athletes and their coaches were all in the staging area getting ready for their race.  Next to us sat a young man, A, and his dad. A is like Boo Bear and pre verbal, though he did bark when excited.  We lined up to go out on the track. Suddenly, A wrestled free of his dad, darted around me and ran back to a table. The cloth on the table was askew and A began straightening it. Once it was properly squared he rejoined the rest of the athletes. His father just shrugged and said that this was A’s thing. The race official chuckled, looked at me and said “Semper Gumby.”  “Always Gumby?” I asked.  “Yes”, he said.  “Always flexible.”  “Yes”, I said,  “That is the perfect phrase, I will remember this.  Thank you!”

The officials lined up the athletes. A was in lane 7 and Boo Bear and I were in lane 8.  The whistle went off and sent up on our way. Coming around the bend in the track and by the bleachers I noticed a big university banner. A noticed it too, and the fact that it was askew!  Suddenly, he darted out of his lane and into ours and began frantically fixing the banner.  The officials all started yelling at him to get back in his lane but he was not to be deterred.  Once the banner was fixed to his specifications, he decided to rejoin the race, but now he was confused as to what lane he should be in. He wandered over into lane 2. Officials are not allowed to touch an athlete without disqualifying him, so they resorted to yelling directions at him and waving flags. This only disoriented A further.  I was a yard or so behind him, watching this unfold.  I lowered my voice under the din and said, “A this is Harriet. I am in lane 8. Go to lane 7.”  Amazingly, he heard me, turned around, looked me in the eye and went back to his correct lane!  He, Boo Bear and I continued to push forward.  At 100 yards to go I saw A’s dad at the finish lane.  “A”, I said.  “There is daddy. Go to dad.”  We lengthened our stride and the three of us crossed the finish line together.

I love Special Olympics for many reasons. It is a venue just for athletes to be athletes.  No one is pandering to them or telling them how inspirational they are.  Athletes run and swim, do gymnastics and play basketball just for their love of the sport.  As I coach I feel honored to be a part of this experience. And, in the back of my mind I always keep that phrase, “Semper Gumby.”

This is not my usual blog about Boo Bear, but a blog about being a PCA and getting paid a decent wage.  The two things are not always compatible.  Every May I sit down with my financial advisor and she helps me work out a budget for the year. Every year I tell her the most important thing is making sure that my employees get paid a decent wage.  This year, all of them will be receiving at least $17 an hour.   Because I get less than 30 hours a week from the state, and I have several PCAs, no one is working full time.  Most of my PCAs pick up 2 to 4 shifts a week and are happy for the extra spending money. Boo is happy to hang out with them.  It is a win- win situation.

Our beloved PCA, A, just graduated from college.  She has made it clear that she wants to continue working with Boo in the evenings and is hoping to find a full time day job. One of the places that she interviewed was ARC homes, group homes for adults with developmental disabilities. She picked this place to interview because she wanted to make a positive difference in the lives of others. To say she came away from the interview underwhelmed and disgusted would be an understatement.  ARC wanted to hire her immediately, but their wage offer was pathetic.  For the first 60 hours of hire, an employee of ARC homes earns $9.86 an hour.  After that, their pay goes up to $11 an hour.  Workers who take a weekend shift make $12.81 an hour.  Those who work nights but get to sleep earn $9.86 an hour.  Those who work nights and stay awake make $15 an hour.  There is no way someone could work 40 hours and week and survive on these wages.  Even more horrifying is the fact that ARC homes hires staff as young as 16 years old.  My son, and the members of that group home, have complex medical needs.  I cannot fathom leaving his care to someone who just barely got their drivers license.  Those who live in these homes are the most vulnerable members of society, yet we as a society are only willing to pay their care takers a pittance of a wage.  While ZipRecruiter sees hourly wages for PCAs as high as $18.03, and as low as $7.45, the majority of PCA wages currently range between $10 (25th percentile) to $13 (75th percentile) across the United States.

I had these numbers running through my head as I walked into Target today.  They had signs up advertising that they were hiring, starting at $13 an hour. Last year Target made the news for bumping their minimum pay up to $12 an hour and said their goal was to pay $15 an hour by the year 2020.  Interestingly, with this increase in wages, they found as a company that morale went up and staff turnover went down.  What a novel concept!  Treat your employees well, pay them a decent wage and give them opportunities for advancement.  I will note that ARC claims they have opportunities to advance, but few people do.  No one can work that long on such low wages and survive.  Therefore, group homes like ARC are chronically understaffed and the turnover rate is sky high.  It is a recipe for instant burnout.

If this sounds bad enough, the story takes an even more sinister tone.  I interviewed a PCA who asked to remain anonymous.  She was working for a family of a high needs child for $10 an hour while going to college full time.  Though she was working almost every hour she was not in school, she could not make ends meet.  She could not find anyone to co-sign her student loan so she was forced to go  into prostitution to make ends meet.  I can’t decide which is more tragic, that PCAs are so grossly underpaid, or that colleges can charge such exorbitant rates that their students have to sell their bodies (or their plasma) in order to make enough money for tuition.  Truly, this game is rigged in favor of the wealthy.  No one should have to sell their body to make money for tuition, and no one should put their health and safety on the line working with a  high needs client for $10 an hour.  The entire scenario is heartbreaking.

So, what is a parent to do?  Choose the company that does your payroll with care.  If they refuse to pay PCAs more than $13 an hour, find a different company.  Write to your representatives in Congress.  Write multiple letters.  Tell them that the wages of PCAs need to be lifted and the cost of a 4 year degree must be slashed.  As for my PCAs, I shall pick them with care, pay them a socially just wage and make them a part of my family for as long as they wish to take good care of my son.  I refuse to put my son into an environment where substandard care is the norm.  He can live with me and his dad for as long as he wishes.  If he ever does wish to move out, I will follow the example of his cousin Janet who bought an apartment for her special needs daughter and her best friend and has it staffed around the clock by competent caregivers.  I refuse to settle for second best for my son.  If you like this story and want to add momentum to this movement of social justice, please retweet, like and share, or better yet, do all of the above and write your representatives in congress.  In the meantime, to quote A, ” Be good humans.”  Everyone has some sort of battle they are waging.  Be kind to others who are in the thick of the fight.  It is a perilous road out there, we have to stick together.

As I have said before, it is a common misconception that Autism is a childhood disorder.  But, if you are born with autism, is it here to stay.  One may learn to “mask”, for better or worse, and blend in, but one will always be autistic.  There is no cure.  This is probably not what a lot of parents of newly diagnosed children want to hear.  They want a cure and they want it now!  So, let’s look at some of the very positive sides of autism, and why hiring someone on the spectrum can be a great addition to your team.

• Attention to detail.  People on the spectrum are thorough in their work and very accurate.  They can see the tiny details that others on the team may miss.
• Deep Focus.  When I am into a project that interests me, their is no stopping me. My husband says I become “monomaniacal”.  My abilities to focus and concentrate deeply are intense.  When I am really into a project I am unable to be distracted from it.  Literally, a bomb could go off in the next room and I would hardly flinch.
• Observational Skills.  Autistic children and adults do best with a listen, look, learn approach.  Let them explore with all of their senses and then turn them loose.  They are never happier then when they are observing and digging up new and interesting facts.
• The ability to retain and absorb facts.  Most persons on the spectrum have excellent long term memories and superior recall.  Small children may recount for you, verbatim, an event that happened five years ago.  This will stand them in good stead when they enter the work force, as they rarely miss a trick.
• Visual Skills.  Autistics are fantastic at visual learning and, once again, have great recall.  They are incredibly detail focused.  This ties back into my earlier point about attention to detail.  This is the kind of computer programmer you want analyzing your code for bugs.
• Experts in their area.  Autistics have incredible in-depth knowledge of the things that interest them.  They also have a high level of skills in this area.  Sometimes these things are just for fun, such as when I became fascinated with the six wives of Henry the 8th, as a child.  I could talk for hours about the Tudor family.  Did this do me much good in the working world?  No, but I learned to turn my laser sharp focus on to the things I needed to be successful in my career.
• Methodical Approach.  Autistics are often very analytical and excellent at spotting patterns and repetitions.  This is useful for computer programmers, musicians, and mathematicians.
• Novel Approaches.  Autistics have unique thought processes.  They see the world through a different lens.  Think of Temple Grandin pretending she was a cow and looking through the eyes of a cow in her job dealing with the meat packing industry.  She looked a the world the way a cow would and thus revolutionized humane animal treatment.  Her ideas were innovative and they worked.  She, like many others on the spectrum knows how to think outside the box. Come to think of it, I am not certain that autistics know how think wiithin the box!  It may be startling to a boss to see their employee take what seems a totally random approach to a problem, but wait and see what the solution is.  It may be something ground breaking.
• Creativity.  Autistics have vivid imaginations and unique ways of expressing their ideas.  Once, again, I refer you to Temple Grandin thinking as a cow.
• Tenacity and Resilience.  I often imagine myself as a bull dog when I get into a project.  I latch onto an idea and work it out, often with a lot of blood, sweat and tears, until I get to a good solution.  As Robert says, I am monomaniacal.  The part of this trait that may be startling to bosses it their employee may challenge long standing opinions or beliefs.  It is the job of the person on the spectrum to learn enough tact to present a new idea with diplomacy, rather than telling his/her boss that the way the company has been doing things for the last 10 years is stupid!
• Accepting of differences.  Autistics are much less likely to judge others.  By and large, we do not judge others, we just want to keep our heads down and do our work.  On the other hand, this does not mean that we won’t question norms!
• Integrity. If you hire a person on the spectrum, they will give you their all.  They are honest, loyal and will be a committed part of you team.

This blog came to me in the middle of the night during a violent thunderstorm.  I had one dog under the bed, whimpering, and another tucked under my arm, shaking.  Obviously, sleep was not going to happen.  So, I started thinking about all the positive things that can come to an employer if they would take chance on that interviewee who seems to march to the beat of the their own calliope. They may not have had the most polished interview, but why don’t you give them a task to do and watch them go to work?  I promise you, you will not be disappointed.

Last weekend was the area track meet for Team Magic, Boo Bear’s Special Olympics team.  Despite a brief rainfall which disgusted all the athletes, we had a bright, sunny day to enjoy ourselves on the track.  Boo Bear competed in three different walking events, the 25 meter walk, the 100 meter walk, and the 400 meter walk.  He came in second, third, and first place respectively.  The ribbons and the fuss over him were not what made me so happy about our day on the track.  Unlike last year, Boo really seemed to enjoy himself.  He was not nearly as anxious or overwhelmed by the crowds and the noise.  He seemed delighted just to have a day to hang out with his mom and A. He also did a good job staying in his lane, which was a bit of a challenge last year.  We are looking forward to our state meet which is the third weekend of June.  Boo will celebrate his 17th birthday by being an Olympian.

On another note, Boo Bear is now 14 weeks seizure free.  I hope I am not jinxing anything but putting this in black and white, but it is definitely cause for celebration.  Autism does not scare me, but epilepsy certainly does!

If anyone local has some spare time the third weekend in June ,please come down to the University of St. Thomas where the state meet is being held.  There will be runners on the track, swimmers in the pool, basketball players on the courts and gymnasts in the gym.  These athletes work their hearts out for a smile and a high five.  Please come cheer them on.  See you at the track!