What motivates us?
I’m sure the answer is different for everyone.
Praise. Power. People. Passion. Puzzles.
Possessions. Prestige. Punishment.
Pleasure. Position. Politics. Possibilities.
I know what my motivation is to eat Benedict Cumberbatch, that is, the life-size chocolate statute of Benedict Cumberbatch. Seriously, there’s now a 40kg Belgian chocolate replica of most everyone’s favourite Aspergian detective, because he was chosen as #1 dishiest UK actor in a survey. David Tennant was the runner-up. Oh I don’t know, that would be a tough call. Can I have both? Er, in chocolate?
Today is Autism Awareness Day worldwide, and those on the Autism Spectrum have often been called, differently motivated. Too many people don’t (or choose not to) understand this. Their theory seems to be if you aren’t motivated by something they can understand then you must be: stupid, lazy, defective, foolish, or a loser. Intolerance shows itself in varied ugly forms.
We’re still in the beginning stages of a long journey to try to get people to understand Autism. It’s a neurological difference. Things changed, doesn’t mean it’s terrible or catastrophic.
Some things we used to believe:
Some thought the Earth was flat (those are called pancakes).
If an elevator is falling, jump up (you’ll just hit the ceiling).
Putting sugar in a gas tank ruins the car (still not a good idea).
Spontaneous generation from inanimate objects (er, no, just no).
The human body is made up of four humors – black bile, yellow bile, phlegm, and blood (some days I wonder).
A duck’s quack doesn’t echo (it does, it does, it does).
Dropping a penny off a high building could kill someone (how about a quarter?).
Quicksand sucks you under (only in the movies).
Earth revolves around the Sun (you’re not our only friend, Sun).
we’re the center of the Universe (actually, a lot of people still believe that they’re the center of the Universe).
My son, who is the center of my Universe has Asperger’s. He’s differently motivated, but that’s not always a bad thing. He doesn’t succumb to peer pressure. He doesn’t believe everything he reads or sees – he questions. He doesn’t worship at the altar of consumerism. He thinks outside the box, actually, I’m not even sure he knows there is a box.
So whether you celebrate World Autism Awareness Day, and/or Easter – all the best!
Viva la difference!
Last night, as I checked on my beautiful boy, now so grown up, I noted again that time has raced by yet he still looks like my baby when he’s asleep.
Having a child with Autism, those sleep times give you some much-needed downtime and perhaps, a curious understanding of time and dimension, hmm, or maybe that’s too many years of Doctor Who.
In this frenzied world, we need more compassion, appreciation, and hope; less rushing, lies, and bullying. Maybe we don’t have time to stop and smell the roses, but I hope we can at least notice the roses are there.
The best time to take a deep breath is when there’s no time. At the end of your life, I doubt you’ll look back and think, thank goodness I spent my life like a hamster on a wheel, that was sooo fulfilling.
Stop flogging yourself for mistakes. They happen. Learn from them. So you write or say the wrong thing. Fall in love with the wrong person. Press the wrong button and start a nuclear war, ok, that example is pretty much the worst mistake ever, try not to do that one. Time moves forward for a reason, so should you.
Don’t reject someone because you’ve had a bad experience either. That experience taught you something, it had a purpose.
Fall apart once in a while. You’re not always “fine”. Sometimes it’s fine not to be fine.
Trying to be someone you’re not is like trying to hide a dinosaur in your bedroom, it’s too big, smelly, messy, and extinct. Why be someone else, they’re already doing it.
If we have time to shop, play games, check the internet, go on vacation, go out to dinner, we can spare 5 minutes to vote. An hour to volunteer or help someone. We can’t make a difference if we don’t at least try.
Instead of thinking about what you don’t want to happen, think about what you do want to happen.
That was my Dad’s way of letting us know, it was Spring.
On this beautiful Spring-like day, I’m settling for the sin of cleaning.
Cleaning, sinful? For someone with Asperger’s, who like things a certain way and don’t like changes, it’s a terrible transgression.
It’s all how we see things – making things fresh and clean or adding lots of weird smells and moving things, possibly moving them out of order?
I clean less than Martha Stewart, but my son, the Aspie thinks I clean way too much. Which got me thinking about balance.
Overcoming Anxiety and Depression on the Autism Spectrum by Lee A, Wilkinson, PhD (Jessica Kingsley Publishers), was a timely book to read today when I borrowed the digital copy from Netgalley.com for an honest review.
Cognitive Behavior Therapy can help people restore balance, whether they’re on the Autism Spectrum or not.
It’s about changing your way of thinking.
Taking a bad, sad, mad, or scary thought and changing how you look at it.
It’s like taking a old, clean sock, soaking it in equal parts water and vinegar and using it to clean your blinds and windows so you can see more clearly.
Don’t forget to use the other sock to dry them.
There’s nothing wrong with being sad, mad, or scared, but how we handle those thoughts can be like washing a cast iron pan with soap and water instead of coarse salt and water. We want it to last and reach its full potential, so don’t forget TLC (for the pan, some oil).
CBT helps manage and overcome difficulties, in a straightforward way, making a complicated situation less so.
Like when you use your blender, helpful, but now it’s messy. Instead of taking it apart to clean, or trying to clean around the blades, potentially causing more harm, pour in hot water and dish soap, lid on, then blend. Just rinse, dry and store.
Wilkinson is excellent at explaining the anxiety, depression, and isolation caused by social skills deficits and cognitive issues, and how they can be alleviated and managed through CBT.
Too often people with anxiety or depression are told to: just stop, grow up, smarten up, man up, or they’re defective or attention-seeking, etc.
Trying to clean a cutting board used for cutting raw chicken with only soap and water or bleach. Think that fixes the problem?
No, but a lemon cut in half with salt on it would do the trick.
So there are worse things I can do than Spring cleaning…if we find the right balance, there’s little or no anxiety for my son and our home is sparkling.
My own little teen Spock has been ill with a cold for the last few days.
Then the news today, Spock/Leonard Nimoy (most famous for Star Trek, but also a fascinating director/writer/photographer/singer, etc.) has passed away. It’s illogical to be so sad at the passing of an actor, but as a Trekker, Nimoy was in my life since I was very young.
Spock was also an early example of a character with qualities of Asperger’s Syndrome on TV. Asperger’s didn’t even have a name when Nimoy started playing Spock, but he showed that being different was cool.
I hope Gene Roddenberry’s vision of the future, where there will be less or no distinction between differences, comes true someday.
I think the biggest tragedy of our time is that people still have so many prejudices, especially about things they don’t understand.
They don’t know what they’re missing.
Most of us have known someone with:
Stroke, migraines, CP, ALS, MS, Parkinson’s Disease,
Alzheimer’s, Tetanus, Pinched nerve, meningitis,
Huntington’s Disease, Migraines, Epilepsy, Polio,
or some other neurological disorder.
Imagine telling someone who’d suffered a stroke to just talk properly?
Don’t think so.
Telling someone with ALS to stop being so lazy?
Suggesting to someone with Alzheimer’s they could remember if they just tried harder.
Or someone with Parkinson’s to stop shaking, that they were just trying to get attention?
Yet people with Autism are constantly told to:
grow up, smarten up, man up, stop being so lazy.
People scoff, blame, bully, abuse, mock, make jokes, call names, etc.
Autism is a neurological condition just like any other.
They have as much control over how their brain works as any other neurological disorder.
If we could all just accept each other, we’d see the amazing.
And I see my teen Spock is awake again…
Goodbye Mr. Nimoy, you came into our hearts through our TVs; you made it cool to be different.
“That is the exploration that awaits you! Not mapping stars and studying nebula, but charting the unknown possibilities of existence.” ~Leonard Nimoy
There are so many things we want to teach our children.
Love. Hope. Caring. Compassion. Empathy. Life skills. Listening. Learning. Reciprocity. Understanding. Manners.
With a child with Asperger’s Syndrome you have a few others life lessons to the list, the strangest one is lying. I’ve tried to teach my son to lie, with really no success. Why would I teach my child to lie? Because society demands it. I’m sure we can all think of hundreds of examples of social lying. I’m sure you’ve lied today, probably multiple times. Imagine your life if you didn’t know how to lie. You boss asks if you like your job. Someone asks if their dress makes them look fat. Society is a hotbed of lies. Some lies are harmless and others are horrible. But what if you couldn’t lie? What if you told the truth no matter how detrimental it was to you?
People say they want the truth, but that’s the biggest lie of all. They would rather lies than uncomfortable truths.
So how do you teach someone social lying while telling them it’s wrong to lie? A confusing message, to say the least.
I think the human race is evolving, and I believe a time is coming when there will less or no distinction between those who are neurotypical and those who allegedly ‘not’.
Asperger’s or High-Functioning Autism are now on our regular viewing schedules, in our books, in our workplaces, as friends, family members, bosses, employees, etc.
Once known as Nerd Syndrome, or for much of the 20th century diagnosed as Childhood Schizophrenia, before that insanity or demonic possession is now seen as essentially benign.
We’re just starting to realize having Autism isn’t necessarily terrible, or catastrophic, it’s a neurological difference. We need to understand and offer proper resources.
The book, Been There. Done That. Try This! An Aspie’s Guide To Life On Earth (Jessica Kingsley Publishers) is a unique, comprehensive, effective, fascinating treasure trove of Aspie knowledge, mined by Tony Attwood (Editor, doctor, author, and Aussie Aspie expert), Craig R. Evans (Editor, doctor, author, and Aspie expert), Anita Lesko (Aspie, author, BSN,RN,MS,CRNA). This book may be written for those with Asperger’s by those with Asperger’s, but I think some of the advice can help neurotypicals as well.
It offers advice from true experts, Aspies sharing their knowledge on how to manage anxiety, depressions, meltdowns, sensory issues, bullying, careers, dating, sex, marriage, friendships, transitions, and so much more. Mentors include: Temple Grandin, Liane Holliday Willey, Bob Castleman, Anita Lesko, Dr. Patrick Suglia, Debbie Denenburg, Lisa Morgan, Mitch Christian, Gary Burge, James Buzon, Charli Devnet, and more.
The more I read about modern life being so challenging for people with Asperger’s the more I thought, is it perhaps too challenging for everyone? Is that why anxiety rates are so high, use of prescription drugs, alcohol, food, gambling, sleep disorders, eating disorders, bullying, fighting, so much more prevalent? Maybe people with Asperger’s are just more obvious because their brains are always honest and don’t try to hide the problems.
If we could all just accept Neurodiversity we’d see that we all need help in different ways and can be amazing, in different ways.
This book is wonderful for Aspies so they know they’re not alone and it gets better; for parents to remember there’s hope; and for others to understand that different isn’t less.
I think it’s tragic that people have so many prejudices, especially about things they don’t understand. They don’t know what they’re missing.
Have you even known someone with: ALS, MS, Parkinson’s Disease, CP, Alzheimer’s, Tetanus, Pinched nerve, meningitis, Huntington’s Disease, Migraines, Epilepsy, Polio, stroke, or any of the other neurological disorder?
Would you tell someone who’d suffered a stroke to just talk properly? Unlikely.
Would you tell someone with ALS to stop being so lazy? No way.
Tell someone with Alzheimer’s they could remember if they just tried harder? Doubtful.
Someone with Parkinson’s to stop shaking, that they were just trying to get attention? Improbable.
Yet people with Autism are constantly told to grow up, smarten up, man up, stop being so lazy. People scoff, blame, bully, abuse, mock, make jokes, call names, etc.
Autism is a neurological condition just like any other. They have as much control over how their brain works as any other neurological disorder.
Hopefully someday Asperger’s won’t even be a diagnosis, people will start to respect Neurodiversity.
Until then, they need help and one of the best places to start is OASIS (Online Asperger Syndrome Information and Support), http://www.aspergersyndrome.org/ where I admit I’m somewhat of a lurker, as I am on most Asperger’s and Autism sites. There to find information and resources for my son, I don’t always feel like plunging into the fray myself. At least OASIS is a respectful site, not prone to the relentless bickering, squabbling, arguing, and bullying to which some Autism sites fall prey.
I wish more of the Autism community could pull together, avoid the infighting, and work toward a common goal of helping those with Autism live better lives.
I was lucky enough to borrow an ARC copy from Netgalley.com of Asperger Syndrome: The OASIS Guide by Patricia Romanowski Bashe, 3rd Edition, published by Harmony Books/Crown Publishing available October 14, 2014.
When my son was diagnosed with Asperger’s years ago there was little information, now there’s a lot of misinformation, but thankfully there are sites and books like OASIS. Full of incredible, insightful inspiration, advice, and more, this comprehensive guide can help put things into perspective when your head is swirling.
A refuge on those days when you just feel like crying.
It seems lately stated or unstated Asperger’s characters are all over TV, in movies, and in books, with varying degrees of success and respect:
Community, House, Star Trek, Doctor Who, The Big Bang Theory, Sherlock, Elementary,
Boston Legal, Bones, The Bridge, Skins, ReGenesis, Grey’s Anatomy, Silicon Valley,
curious incident of the dog in the night-time, Edward Scissorhands,
Adam, Monk, Hannibal, Temple Grandin, 24, Triggers, Mercury Rising, Parenthood,
Fringe, Alphas, Doc Martin, Dear John, House Rules, Criminal Minds, P.S. I Love You,
Rain Man, Salmon Fishing in Yemen, CSI, Extremely Loud and Incredibly Close,
Mozart and the Whale, My Name is Khan, Snow Cake, Touch, Somersault,
Most often showcased as charming, eccentric, funny, cute, and usually brilliant Nerds or Geeks who have great jobs, loyal and caring family and friends, etc.
Unfortunately the prognosis is not often that optimistic.
I can’t emphasize enough that this is a debilitating disorder, not entertainment.
Not functioning is not charming.
Not being able to keep a job or friends isn’t cute.
Getting into difficulties or danger because you can’t comprehend situations is not brilliant.
Being left out, mocked, teased, bullied, or hurt is not funny.
Being medicated or hospitalized or jailed is not eccentric.
Struggling all day, every day to even grasp some of the world around them isn’t amazing.
It may make for good entertainment, but in real life, people have to live with the consequences.
I don’t currently share my home with any feline characters unless I count my son who has Asperger’s (see earlier post, https://yadadarcyyada.com/2014/07/27/all-cats-have-asperger-syndrome/ ), but I’ve had a lot of experience in their world.
My friend George (loved Curious George) was pure black except for a white bib and apron. George liked to sit on the front porch, even more on Halloween where he got maximum effect. He lost one half of an ear being out in the cold; we lived in Coniston, near Sudbury, it was very cold at times. In those days most cats were outdoor cats, this also led to us calling his name or saying, bad George which got a hearty laugh from my Grandfather because his brother, George lived right across the street.
Other cat friends?
Candace, regrettably insane; eventually needed little kitty pills to keep her calm (those were sooooo much fun to give her). My Mom let my Dad take me to the SPCA to find a kitten. We were two big saps who came home with a tiny runt kitten who needed to be fed with an eye dropper for days and the SPCA said they would replace her when she passed away. I didn’t want her replaced, I loved her. Candace lived 17 years. I don’t think she had many other fans.
We had Tanis (yes, my Raiders of the Lost Ark phase, which I’m sort of still in) who my Mom (the only one of the family who professes not to be a cat person), saved when someone threw it out of a car. We couldn’t keep her because of Candace, er, aforementioned krazy kitty. We found her a good home.
There was also Xena and Luna who were lovely. Luna had to find a new home because she decided she wanted to play with my son as a baby, just his head. And Xena, her sister had to find another home when I found out my son had Asthma.
No cats since.
If you do get a kitten or cat, please, adopt from an animal shelter or rescue; or family or friend.
Our extended family has had so many beautiful cats over the years, we don’t think of them as pets so much as companions.
They think of us as staff.
Sometimes simple and straightforward are best.
All Cats Have Asperger Syndrome by Kathy Hoopmann (Jessica Kingsley Publishers) explains Asperger’s Syndrome perfectly. And it has adorable pictures of cats being adorable.
This delightful and deceptively minimal book is the first book you should read if someone you love is diagnosed with Asperger’s Syndrome (also called Aspergers Syndrome, or Asperger Syndrome, or Asperger’s, or Aspergers).
The only downside? Like Sheldon Cooper (played so brilliantly by Jim Parsons) on The Big Bang Theory, it makes it sound much cuter than it usually is; for those who have it and those who love them. Or Sherlock Holmes (take your pick, the most recent, Benedict Cumberbatch and Jonny Lee Miller) which makes it seem exciting…Or all the other examples of Aspergian or High-Functioning Autism on TV, in movies or books.
The truth, it’s difficult, frustrating, wonderful, sad, amazing, and confusing…for all concerned.
There are many great books I would recommend, but these are quite helpful, informative and above all, accessible.
Borrow them from a friend, library, or Autism association; or purchase them in store or online.
The Complete Guide to Asperger’s Syndrome – Dr. Tony Attwood; Inside Asperger’s Looking Out – Kathy Hoopmann; An Asperger Dictionary of Everyday Expressions – Ian Stuart-Hamilton; Kids in the Syndrome Mix – Martin L Kutscher, MD; The Oasis Guide to Asperger Syndrome – Patricia Romanowski Bashe & Barbara L. Kirby (Harmony Books); The Autism Discussion Page on the Core Challenges of Autism – Bill Nason (Jessica Kingsley Publishers)The Everything Parent’s Guide to Children with Asperger’s Syndrome – William Stillman (Adams Media)
The Asperger’s Answer Book – Susan Ashley, Ph.D. (Sourcebooks, Inc.)
Empowered Autism Parenting – William Stillman (Jossey-Bass)
The Fabric of Autism – Judith Bluestone (Sapphire Enterprises, LLC)
How To Teach Life Skills to Kids with Autism or Asperger’s – Jennifer McIlwee Myers (Future Horizons)
Quirky, Yes Hopeless, No – Cynthia La Brie Norall, Ph.D w/ Beth Wagner Brust (St. Martin’s Griffin)
Thank goodness for Jessica Kingsley Publishers, I don’t know what I would have done without them.
If your child, spouse, friend, or yourself is diagnosed – don’t panic!
Media, doom and gloomers, people holding mock funerals for their children when they’re diagnosed, etc., even those who wish to help can intentionally or unintentionally scare you.
Don’t get caught up in the conflict people, people that love to make everything a drama.
Don’t hyper-focus on people ‘understanding’, including your family or friends, how could they understand? Just hope they’re supportive.
Focus on helping the person you love.
They’re still the same person, you just have a diagnosis that will aid you and others, to help them.
Helping the person you love find the skills and resources is taxing enough without adding fuss.
It’s also important to remember Autism isn’t a straight road, there are many, many twists and turns, ups and downs.
“It does not matter how slowly you go as long as you do not stop.” ~Confusius
My son has Asperger’s and several medical conditions, but is doing better than anyone would have predicted.
Yet when a setback comes along, a medical procedure; other anxiety-provoking situations, people, challenges; illness, or something that is overwhelming I have to remember, it may seem like one step forward, two back, but he still took that one step forward.
But it’s still been a long few days.
“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’” ~Mary Anne Radmacher
1. April is Autism Awareness Month.
2. April 2nd is World Autism Awareness Day.
3. Today and all through April there will be more talk, more posts, more ads, more stuff sold, more people arguing about what caused Autism and still the numbers of children with Autism will rise.
4. For me everyday is Autism day. My son is brilliant, funny, clever, handsome, and amazing; he also happens to have Autism.
5. Children are being diagnosed with Autism in record numbers. Businesses, charities, celebrities, etc. are making record profits off the fears and vulnerabilities of parents.
6. Governments may say they’re aware and are doing a lot, but in truth, they just aren’t doing nearly enough.
7. Some parents hold mock funerals when their child is diagnosed with Autism. Is it just me or is that super creepy?
8. There are open doubters, closet doubters, haters, blamers, whiners, name-callers, bullies, accusers…the list goes on. None of that makes my child better.
9. The many voices for Autism, from whispers of hope to screams of anger to cries of despair can be heard throughout the world, not just today, but everyday.
10. There are plenty of theories and things people blame for Autism, yet to date, no single cause has been proven.
11. My child has Asperger’s Syndrome, he’s on the Autism Spectrum. He doesn’t need saving. He needs to be happy. Live up to his amazing potential. In that way, he’s the same as every other child.
12. Finding out my son had Autism didn’t change anything, I loved him just as much as ever.
13. Some people see my son as someone to be pitied, or mocked, or bullied, or judged, or labelled, or ignored. If some people took off their intolerance goggles they’d see who people really are.
14. Autism used to terrify me, now I see that’s it’s different, not bad or scary or less, just different. Who ever said different was awful? Neurodiversity Now!!!
15. When something or someone is hurting our children we could easily be angry, sad, frustrated, depressed, look for reasons, excuses or someone to blame. Instead we need to focus on helping our children and finding the real cause.
So on this day and others, remember, Autism is just a word, the real story is in each child and who they really are.