I can't really believe I am having to address the issue of her hair. I get that some of you might not understand food aversion, or echolalia or any of the many baffling aspects of autism because these things can be pretty difficult to relate to until you've experienced them; but her hair? Seriously? Do you know the lengths we took to even get her to sit in a stylist's chair? Now that she enjoys her visits, we want to make it as wonderful as possible, and part of that is allowing Kate to choose the haircut that makes her feel her best. I know many of you understand this, and support Kate in *gasp* her freedom to choose her own hairstyle, but you might be surprised to learn that you enlightened few are rather rare.
Frankly, I'm getting tired of repeating myself. I'm writing it here because some might think they're the only one that has questioned our decision to allow Kate to wear her hair short, but unfortunately, it's been the topic of many an angry email or comment. So, in an effort to reach everyone at once, here is a list of the reasons why we let Kate rock the hair she wants.
1. Long hair, although it intrigues her and she's often imagined having long mermaid hair, can be too much for her and as soon as her growing hair touches her ears and her neck she starts asking for "Johnny Test" hair. That's Johnny below. Kate identifies with him. So, obviously he's cool as shit. (She even got a little of that flashy red that makes Johnny so great.)
2. Maybe you prefer little girls to have traditional haircuts. That's great. When you were little I hope your parents allowed you to have the haircut you wanted. Your preference, however, does not give you the right to look sadly towards Kate as if she is missing her only chance to have long little girl locks. You're being judgemental and I promise you Kate would never, ever judge you for your choice of hairstyle.
3. It's 2016. That means your insistence that little girls wear their hair long is a bit antiquated. Remember, as I wrote earlier; your personal preference is fine. Your disapproval of others that don't share your opinion is not.
4. Surely, you have bigger things to worry about than our little girl's hair. Right? Right?
5. She looks amazing in that righteous little cut. So, unless you have something nice to say...
Imagine, if you would.
It's Monday Morning. You've been given your dream job. You are running a small section of a large company with approximately twenty-five employees under you. You are the boss, of this particular department, and you very much want to succeed because you love your job. You know you are integral to the companies success as a whole and that feels good and is a little scary at the same time. You think you are ready for this challenge, though. After all, you spent more than six years in University and many dollars to become qualified for this position. The salary is lower than you'd expected and there are no yearly bonuses or incentives but the job itself is a great one, so you really don't mind.
There are many others who are also invested in your department's success. The pressure is rather high and you work to please both your direct employees and your employers; those that make the real decisions about the quality of your work. The public also has a stake in this company and is watching closely to make sure you don't mess up or take too long to eat your lunch or worst of all, mishandle the career path of any of your twenty-five employees.
It's Monday morning. Everyone is a little sleepy from a busy weekend but there is work to be done. You know this, because you spent most of your weekend preparing a presentation to be delivered today and you're just a little excited to see how your staff will react to your presentation. Surely, they will notice the extra effort you took to add music to each slide and the little jokes to break up the more boring elements. Surely, they'll appreciate that you skipped the park with your own family so you could print colour packets to accompany the presentation from your own colour printer.
You no sooner turn on your laptop when one of your employees tells you that they don't want to listen to your presentation and they'd rather do something else...anything else. It's rather rude but you're careful not to take it personally and quietly insist that he stay and watch, regardless. Another, is sitting ready to watch, but you can see he had his phone in his hand ready to play Clash of Clans should your presentation get too boring. You feel annoyed and hurt, but as a professional you will begin to present and let your excellent work speak for itself. You'll have them glued before the third slide. You've even added multiple hands-on activities and cleverly timed breaks into your presentation to ensure optimal comfort for your entire audience. You've made sure you've relayed the information with Gardner's Multiple Intelligences in mind and you've used many of the other strategies you learned in school. You've covered all your bases twice over.
You explain to your staff that this presentation is crucial to the success of the department and therefore the company as a whole; but half of them are not listening and the other half have become distracted by an argument that's begun over by the photocopier. Apparently, one of your staff members was shredding important documents, while another was yelling at the top of his lungs that you need be there immediately, to stop the shredding.
You prepare to move to the photocopier to deal with the situation and you ask the remaining staff to sit quietly until you return. The presentation you were so exited about, and stayed up late to complete would have to wait, until you sorted out this argument. You considered calling HR but then decided against it because you know they are swamped lately.
You unplug the shredder and ask both staff members to return to the boardroom and get ready for the presentation. Most of your staff has now congregated behind you and you ask them to re-enter the boardroom. They do so, grudgingly, and you remind them that you are invested primarily in their success as employees and you do all, but beg them to take part in your presentation.
Some sit in the middle looking bored, some lean on a table. One sleeps at the table, and another picks at her nails with a scowl on her face. Two of your employees have taken front row seats and sit with notebooks ready to take in all your handwork. "Shredder" as the rest of the staff have labeled him is missing from the room, but you take this opportunity to being your slideshow, anyway.
Your computer is old and it takes longer to boot up than you'd expected. You scramble to get things going because you know you have already lost the attention of half your staff and this information could mean the difference between your departments success or failure.
At last your laptop comes to life and you open your presentation. Just then, you are called over the intercom to deal with an issue that is arising in the hall. You rush out to find 'Shredder' vandalizing the walls with your favourite Sharpies. You grab your sharpies and ask another staff member to notify security. You're going to need help with this guy.
Once security has taken 'Shredder' to HR to be dealt with you return to your boardroom. Your smile is gone now because you bought those sharpies with what little money you had left after paying your bills and he has them ruined. You consider asking the company to replace them and then you laugh and laugh. Well, at least the smile has returned to your face.
Upon entering the boardroom you notice that one of your staff members is waiting for you to administer her insulin and another needs help measuring out his meds before he eats. A third has had an accident and cries because he has no change of clothes. You glance over at your embarrassingly underpaid and amazing executive assistant and realize that she has been busy translating your presentation to an employee with limited verbal skills while at the same time soothing the anxiety of a staff member who misses his kids. You glance back at your poor soaked staff member and quickly call his wife and she tells you she doesn't have any way to get there so he'll have to stay wet. This is not your first rodeo so you find the drawer of emergency items you purchased for moments just like this. You give him some ill-fitting but dry duds. You notice the clock and realize the coffee cart is about to come around the corner so you'll have to put your presentation on hold until after break. This is frustrating because your employees are so much fresher first thing in the morning. Oh well, nothing can be done, so you help those who need it and mentally change the days entire plan.
You're going to give this thing another go as soon as you can convince your employees to leave the coffee and muffin cart, which is a far stronger draw than your powerpoint presentation. They've even brought croissants today. You'll have your work cut out for you.
It occurs to you that if you get through half of your presentation by lunch time you'll have to take the win. Maybe, if you don't have to see to "Shredder" over your own lunch hour you could use it to re-work your presentation a little. Maybe a tweak here and there would get them on board. It's almost as if they don't understand how important their success is to you. Strange.
This is your dream job, right?
Maybe you've just glanced at the byline and thought to yourself, "Who the hell is this? What credentials does she have to write about 'The Age of Autism'?
And you'd be right, too.
I'm a mom and a teacher and I experience autism in my home and also in my job, but I have no more right to explain this new reality to you than does anyone. But here's the kicker, I'm going to try anyway. Stay wth me...
Every single person with autism has an individual experience, as do their families and friends. Here is what I know about my own experience.
Life for me in the 'Age of Autism' is a little like this:
Raising a little girl with autism
Working daily to help her navigate the world
Spending small fortunes on therapies, sensory-tools and diet and nutrition
Worrying daily about her future
Worrying daily that her sister isn't getting a fair shake
Watching her struggle to understand
Watching her hit, bite, scream and otherwise, take her frustration with this world out on her sister, her father and myself.
Laughing every single day at her blunt honesty and endearing confidence
Loving her every single day for her kindness and deep empathy for others.
Teaching children with autism
Working daily to create meaningful lessons and activities
Spending a small fortune on my classroom
Struggling to find out how each child learns and the best way to teach them.
Watching them hit, bite, and scream in frustration
Worrying daily that I am failing them.
Worrying daily that I am failing all the others.
Laughing daily at their exuberance and delight
Loving them daily for all the ways they tell us thank you
That's it, in a serious nutshell, because there are many books that could be filled on the topic of living and working with those on the spectrum.
For you it might be a little more like this:
1 child in every 68 (1 in 45 boys) is diagnosed with autism per the CDC's latest numbers. Those numbers are already a few years old and have been jumping in recent years. In 2008 those numbers were 1-88, in 2005 those numbers were 1-150, and so on.
You may already love someone with autism and if you don't, you likely soon will. Either way, you are going to experience autism in your day to day life because with numbers like that, autism is essentially ubiquitous.
If your children are neurotypical, developing typically, or 'normal' as they used to say, than you'll experience autism through their eyes, as well. They'll have friends, classmates and sometimes family members with autism in their lives. This is their 'normal' (there's that word again).
Your kids will understand that today's classrooms are very diverse which will then transfer to their view of the world. They'll understand that some people struggle with regulating their nervous system and can feel pain at strong sights, smells, sounds, textures and unpredictable situations. They'll understand that some people don't use language to communicate but that they communicate nonetheless. They'll understand that fair does not mean equal and they'll support putting any and all accommodations in place to help anyone that should need them.
Most importantly, they'll help you understand all those things,too.
Ultimately, this generation of kids is pretty damn amazing and you're lucky enough to be raising them.
Grace and Kate's mom. (Shanell)