Advice for Raising Your "Aspergirl" in a World That Won't Adapt to Her: One Dad's Journey Thus Far
Never mind training a dragon, try training to be a Dad of a teenage daughter with Aspergers Syndrome (AS)
Finding limited to no resources for fathers of teenage daughters with Aspergers Syndrome (AS), I decided to document all of the best practices we have discovered, lessons we have learned, and fun that we have with our daughter so other Dad's can know that they are not alone.
Books on the market, supports groups, local autism service providers, and even on-line resources are all written without any advice on how to be a "Dad" of a daughter with AS. Boys with AS outnumber girls with AS 10:1 and with divorce rates running higher in couples with a special needs child where the father usually splits, it is becoming clear how I am not in the majority of the target market for the subject matter.
This is a collection of memorable stories, what my wife and I have learned, and what we have done to help her become a young woman and start navigating the world on her own. Remember, any idiot can be a "father" but only real men can be a "Dad" and I hope other men find this useful.
Our story of Emma and her diagnosis
Having scratched our heads for numerous years regarding our first born's idiosyncratic behavior, interests, food dislikes, and lack of numerous friends, an d a few meltdowns in her school regarding social situations, we decided to revisit the 7 years old PDD diagnosis that neuro-psychologists give to everyone they can't fit into a box.
At the age of 4, we were initially given suggestions by very un-certified individuals in the Waukesha School District that our daughter was autistic but they had no ideas about what advice to give us since she did not display the typical behaviors of full blown autism. We spent a lot of money with various "professionals" only to be given a broad spectrum diagnosis of Pervasive Development Disorder Not Otherwise Specified (PDDNOS) which could be used to diagnose everything from weeds in your lawn to the thawing of lake ice in spring or anything else that can not be totally predicted or replicated. We were, I guess, satisfied to know that our daughter had autistic tendencies but we could learn to live with them and that she might grow out of them.
Now 5 years later after reading numerous books, parental support blogs, objective medical reports, and one fantastic individual in the school, we found that our daughter was a "text book" aspergers case. We had Emma officially diagnosed through the medical system to be able to align resources through our school systems and give us a basis to start managing and guiding her in a uniformed way across all of our friends circles, family circles, and extra-curricular activities that she loves to do.
I equate it to the frog in the pot....the frog does not realize it is getting hotter as the temperature increases versus the frog that is introduce to the water once it is already hot. We had come to live with Emma's idiosyncratic behaviors and actions not realizing they were gaining form and more recognizable as AS. Once we did put the connections together, it became important to us to validate her having AS so we could better understand what we had to do for her and with her.
Now, we have started to tell our friends and family about Emma and we finally sat down with her to help her understand some of the hurdles she is facing so that she can become her own person and learn what she has to do to navigate the world and society. The process we went through has given us the chance to develop a plan that is consistent throughout her world and has really helped to set her up for a better future.
The mother of all meltdowns
"911, what is the nature of your emergency"
After 3 days straight of getting in trouble at her school, Emma had earned the right to loose all of her privileges as previously warned and agreed to on the prior day. Upon her coming home on the bus, I gave her a list of all of the things that she has been provided that I was now going to sell on Craigslist since it was obvious that she did not want to be part of the family by acting the way she has.
Her solution to this loss of everything except food, shelter, and clothes led to the dialing of 911 to complain that her parents were being mean to her and took her bike and iPod away.
The Sheriffs department was very understanding upon calling us back to ask "Is everything was OK because we received a call from this location?". "Everything is great" I replied, "But I could use some back up with my 12 year old that thinks it is a good idea to dial 911". "Is anyone drinking at the location sir?" they asked to which I replied "Not yet".
The Deputy was awesome and I will leave her name out of it. They have to send someone once you call to make sure everything is OK. Upon arrival, I explained the situation that had happened and the previous events over the past few weeks at school and she asked if she could talk to the girl (Who was hiding at the neighbors since I told her the Sheriff was coming).
At the end of the engagement, Emma finally realized that actions have consequences......Unfortunately it took the Sheriff getting involved to help her realize this. I equate it to the same reason it is good to have someone else coach your kids once in a while....They actually listen!
Teach your Aspergirl to show you "what's in it for me?"
How to get what you need done before you just say "yes"
We are very fortunate to have a family house in Lake Geneva, WI where my folks live full time and we have lake access with a park, beach, and a boat on the pier. I was able to work remotely through the July 4th holiday week with the kids while my wife stayed in Waukesha for a few days to finish up work before she joined us for the rest of the time. For 9 days straight I was asked the following questions and not necessarily in the same order or at the same time of the day.
Dad, can I (we):
- Go for a boat ride?
- Go to the Public Pier?
- Go Fishing?
- Go Down to the Park?
- Go Miniature Golfing?
- Go Tubing?
- Go for a Sunset Cruise?
- Go to the Movies?
- Walk the North Shore?
- Have Dessert?
- Go to the book store?
- Go for a Bike Ride?
- Have a hot dog or quesadilla for dinner? (her only two food groups by the way)
I finally figured out that she thought there would be a different answer if she asked in a different way...Pretty smart if I say so myself. She would even come up behind me, rub my back, and tell me I am a great Dad before she would ask....Pretty smart!
So instead of automatically answering "no" or "yes" to the consistent barrage of requests that would make a normal person drool, I would work out a deal that if she helped her Oma and Opa with chores, would feed and walk the dog, would make her bed, would pick up her clothes, take a shower, and helped her brother or sister with something, and let me get my work done, take towels down to the park, and clear her dishes, I would make sure that we would do a few of these things each day...except walk the North Shore which is 8 miles and requires more logistics than I had accessible. I of course had to explain to her exactly how much work I had to do and when I expected to complete it which led to the consistent "Are you done yet?" being asked.
It was a good week but make sure you communicate the plan for the day so your Aspergirl understands what is expected and planned so you don't start drooling. The next step is getting her to see what she can do for me proactively and give me the "What's in it for me, stupid not to say yes" value proposition before she asks me to do something. Try "If I help Oma and Opa, feed the dog, and take a shower, do you thing maybe we could go miniature golfing together, I have a coupon...." That would be a "yes" from me.
Sarcasm and the non-sarcastic kid
God works in mysterious ways
One of the most evident traits of girls with AS is their complete inability to be sarcastic or understand idioms and analogies....It's not their fault that they are only wired to understand things in literal meaning and in black and white terms....not that they can't start picking up on it when used enough.
God blessed Emma with one of the most sarcastic Dads who owns a management consulting firm where he lives to use the best sports and war analogies to train sales teams and God blessed me with the absolute least sarcastic person on the planet who requires a lot of additional input to understand what her dad means when he uses such phrases like "we're are just washing each others socks here and not moving anything forward" or "I don't have a dog in that fight".
It is best to be direct when communicating with your your Aspergirl....make sure she understands what you are telling her by having her give you an example of what you mean and telling you what she is going to do next.
Every thing I know about management I learned from the girl
Helping to see the forest through the trees
Much like working with some of my clients, everything starts with setting a goal or having a targeted outcome that we want to meet.
Your Aspergirl will have trouble achieving a goal or targeted achievement, participating in activities, and following requests unless she understands the bigger picture or the "why" she needs to be doing something the way you ask of her. Just asking her to "go fill the bird seed", "feed the dog" , or "help pick up the junk in the yard" will not get done unless she understands why we do those things and what her role is in it.
You need to give her the road map of what you need done and how she can do it so she can replicate it. You also need to give her clear picture of what she is going to be doing so she can use it as a check list to get it done. I used to ask Emma if she wanted to run some errands with me and I would get 40 questions about where we were going, what we were doing, why we were doing it. Now I ask her if she wants to come to the bank to deposit a check, go to the hardwarde store to pick up some birdseed, and then come home to clean up the yard so we can have company over, I just get a "sure" in response but she does her part in the end.
Learning how to spitball her brother back
It only took choking twice!
On a recent trip to Florida while waiting way too long for our pizzas to be delivered to our table, I decided to go juvenile and blow the straw wrapper at my daughter to get her out of her concentration stemming mode playing with the strings on her hoodie. It led to an instant "stop it Dad!" from the her but also led to gut wrenching laughter from the other two kids.
It then turned to blowing a spit ball that I had secretly developed at my 7 year old son who asked "are you spit balling?" leading me to think that he had already learned the sport with his friends. (This helped with defending my wife's accusation of teaching the kids bad habits....they already knew so I was now coaching them for better performance)
Luckily we were at a table away from the general population so we could proceed with spit balling among ourselves as my wife looked on with comical disgust as I landed one on her wine glass.
Emma decided to mimic us once she figured out what we were doing when out of the blue we hear her gasp and choke as she decided to first inhale through the straw that held her first spit ball. "That didn't work" she said as we all laughed with her as she started reloading for the second attempt.
"Oh nuts" were the next word we heard as she inhaled the second attempt.
Committed to get her brother back now that he had landed 4 spitballs in her hair as the younger daughter was unloading salvo after salvo on me, she loaded her straw for the third time, inhaled without the straw in her mouth, slowly lifted the straw with a bead on her brother and blew as hard as she could.
Since the spit ball was too big for the straw, she almost blew her eardrums out which led to more laughter from the table. As we proceeded to attempt at stopping the mayhem based on the look I was getting from my wife, Emma, unknown to us, had re-sized her payload, got a bead on her brother and landed a spitball square on her brothers forehead as she proclaimed "Now I can Spitball too....Hah!"
Getting your Aspergirl out of her comfort zone to have senseless fun and learn a new skill......Priceless!
Now I just hope she uses her new skill appropriately and not feel she has to tell her teachers what she learned on her vacation since she can not hold a secret to save anyone's life.
That's not true Grace...............I see you all the time!
Honey, she really did not mean what you think she meant
I was working on my laptop in the home office when all of the sudden, the garage door flies open, in storms the 12 year old, down goes the back pack with a thump, and up she goes to her room crying all the way saying “She called me fat and lazy”! 3 seconds later, in walks Emma mumbling “I don’t know what her problem is”.
Not knowing where to start with this encounter, I started asking Emma about what she did and said to her sister to make her upset. I made the assumption that Emma had done something “not nice” to offend her sister. “Nothing” was the reply to which I asked “how does nothing cause your sister to act like that?”. The answer was “I only told here that she was not invisible.”
A side note: You have to understand Grace. She is a very happy, enthusiastic, and caring girl that wants to do good things for people but when she says hello to someone at school or tries to make a conversation out of a chance encounter, she will get down on herself and think that people do not like her or want to be around her if they do not respond. She just has to find the right girls and it is tough in Junior high in the first place. I always tell her to drive her own car in her own lane and she will meet the good people eventually.
Back to “E” and the post game of what happened. As they walked home together from the bus stop, Emma did notice that Grace was feeling down and she asked her what was wrong. Grace replied that she thinks she is invisible to others and that nobody knows she is there (based on an encounter from school where two fellow soccer acquaintances had blown her off when she tried to talk to them about the recent tryouts). Emma’s reply was “That’s not true, I see you on your bed with your iPad eating snacks all the time!”………..Grace heard “you are fat and lazy” because we have made a point to her before as parents about not hanging out in her room as much and Emma has heard those conversation.
There is a reason we laugh when watching any of the Star Trek movies. Listen to what Spock is actually saying versus how the other person perceives the answer. It has led to Emma being referred to as “Spockette” several times given her replies to certain questions and statements in conversations.
Emma was strictly stating a fact that Grace was not invisible to her and that she can “see” her all the time when she comes in her room. Could she have said it differently and not included all the details about laying around, watching the iPad, and eating? Yes, but that would not have made sense to her to omit those points since it technically is true and Emma is not capable of hiding the facts that formed her thought. We are working on that.
Grace is far from fat and lazy. She is an awesome soccer player for SC Waukesha, WI and a great swimmer for Swim Express and is everything you would expect from an athletic and smart 12 year old. She is also very tolerant of her sister most of the time.
The Necessity To Correct Others
Politics has their fact checkers in the media and we have Emma.
Be careful not to get a sports score wrong from the weekend, who, where, and when your favorite sports team is playing next, the forecast for the next three days, how much you spent at Starbucks, where you were in the past 5 hours, how long it took to get to your last destination, what is on TV next, what we had for dinner the last five nights, how much gas costs at your local stations, and what days she has off school.
If we could only monetize her memory somehow.....Maybe I can teach her cards and take her to Vegas for her 21st? Teach her the stock market? Study economic trends for emerging market opportunities? Just saying...............
Unwritten Rules VS The Purist
You take it for granted that others around know local jargon, sarcastic idioms that are geographically unique, and that some people and keep secrets. Emma's nickname is "bucket mouth" if you are wondering and I have never been able to get away with anything where she knew what actually happened.
Emma had a tough time understanding certain jokes and sayings that are quite normal for everyone to use in everyday conversation. Read the previous sections on sarcasm, correcting others, and "Spockette" for further understanding.
It is only the letter of the law with Emma. There is no spirit or situational use of the rules depending on the circumstances. Special dispensation is not something she understands. You are either guilty or not, justified or crazy, a winner or you lost and their is no trophy for just participating.
If you have been to MKE, then you might recognize the entry door behind the kids in an alley off Wells St. She will need to tell someone eventually about the password to enter but for now, it is the only secret that I can tell she has ever kept to herself because she actually enjoys what happens to people when they get it wrong. Schadenfreude is very strong with this one.
Dream Job NOT Government Assistance
At Christmas dinner in 2014 some visiting in-laws actually suggested that we get Emma on disability and government assistance because she needed more help than they thought we could give her. This was taken just as well as the advice we got from the initial Doctor that diagnosed Emma saying she would never graduate High School and another story all in its own about other peoples opinions.
In 2017 Emma graduated high school and she is currently a part time college student at the University of Wisconsin Milwaukee - Waukesha Campus working on her Associates Degree towards her current goal of being in Sports Marketing. She graduated a double varsity athlete and in the top half of her class.
In September of 2019, Emma was hired by the Milwaukee Bucks as a Guest Services Representative at Fiserv Forum. In a way, everything she had done thus far in her life led to this opportunity and future for her.
Even with all of my behind the scenes networking and connections, she did it all on her own. Of course I had to drive.
We are very grateful to that organization for believing in her just as we always have and it's probably time for her to start writing about her own adventure.
Good online resource to help
This is a list of blogs and online websites that we have found to be helpful in our adventure.
- Your Little Professor
Asperger's syndrome is considered a form of high-functioning autism. The outlook for children with Asperger's tends to be much more positive, with many becoming experts in their chosen fields. Because much of Hans Asperger's work was lost in WWII, th