Last week, we watched the movie, The Imitation Game and it was easy to see why Benedict Cumberbatch received a Best Actor nomination for his role as Alan Turing. I knew nothing about Alan Turing and his AWEsome math and cryptological mind that eventually enabled him to decipher the Nazis Enigma coding machine. Alan's ability to think outside the box, to think "differently" than his colleagues, helped us to win WWII. It is estimated that without Alan's contributions, without his AWEsome mind, the war would have lasted about two years longer with the cost being approximately 14 million more lives. 

I thought Alan Turing was brilliant, fascinating....and autistic. I immediately Googled, "was Alan Turing autistic" and quickly discovered there were many others who saw autistic traits in this often misunderstood genius.

There is no way to determine if Alan Turing fell somewhere on the autism spectrum, but, there were certainly a lot of traits that made me (and others) speculate. Alan was a genius in both math and deciphering and enciphering encrypted messages. He also didn't like it when his peas and carrots touched. Alan ate an apple every night before bedtime. He struggled understanding sarcasm and picking up social cue. Alan also had trouble relating to his peers, so, he had a hard time making friends. Hmmm...what would the DSM-V say? 

Along with his genius IQ and his social quirks, Alan Turing was also gay at a time when being gay was not only socially unacceptable, it was against the law. As a result, Alan Turing was forced to pretend to be someone he was not in order to conform to the way society expected him to be rather than having society accept him as he was. Being a brilliant, quirky, socially awkward, gay man was not the majority, so Alan felt obligated to play The Imitation Game. Sadly, the results were tragic.

After the movie ended, I found myself wondering if all these years I've been forcing Ryan to play his own version of The Imitation Game? I mean, for years, I've been asking him to do what a neurotypical "majority" society expects of him, but, not what feels natural. Asking Ryan to look people in the eye when speaking to them, telling him not to script so loudly in the bus line, asking him to please wear jeans instead of fleece pants to school, and teaching him to ask what others are interested in, when in reality, he could care less. 

There were many times over the years I forced Ryan to try this activity or that activity because that's what "EVERYONE is doing' and by "EVERYONE" I meant the neurotypical majority. In other word, imitate the majority, do what your neurotypical peers are doing because that is what people expect, that is what people want to see, that is what makes people comfortable. 

Conform, don't stand out. Be the same, don't be different. Imitate, don't be true.

Sure, I understand that Ryan needs to have good manners, learn what is appropriate and what is not, and I want him to be a successful contributing member of the neurotypicals that makes up the majority of our society, but, I also want Ryan to hold on to the essence of who he is, of who and what makes Ryan, Ryan and to never, ever feel shame for doing so. 

As I felt my old friend Guilt pounding on my front door ready for her daily glass of wine, a thought occurred to me. A thought that shifted my entire way of thinking that had me re-writing this entire blog post. It's not Ryan or people living with autism who are playing The Imitation Game, it is the rest of us. We are the ones who so often spend our days imitating, not Ryan. For the most part, when the neurotypical majority is not nagging him, Ryan is confident in who he is, and he is not imitating anything or pretending to be someone he's not, while trying to conform to the majority. No, that's the rest of us.

Think about it. How many of us have gone to a party we had absolutely no interest in attending, but, since "everyone will be there" we put on the latest and greatest dress with the latest and greatest shoes and the latest and greatest accessories along with our fake, all I want is to be in my jammies watching Netflix smile, and out the door we went? We've all worn clothes or fashion accessories that have felt so foreign and so ridiculous (Ummm, hello,"banana clips"?) because, well, "everyone is wearing them". Have you tried so hard to keep up with the Joneses that sometimes you forget that you are not a Jones and then have absolutely no recollection of who you were before you met the Joneses? 

Yes, we neurotypicals are all guilty of playing The Imitation Game and although chances are it won't cost us our lives like it did Alan Turing, it does certainly make one wonder how much better life would be if we just quit imitating. But, chances are, we won't. 

Ryan is winning a game he didn't even know he was playing. He is winning by sticking to his white, comfortable Joe Boxer socks because they are softer than the $14 a pair socks with the Nike logo emblazoned on the side so everyone knows you paid $14 for the socks (Joe Boxers are softer and they hold up better, I swear). Ryan is winning because he still loves Minecraft even though he "should" be playing Halo or Call of Duty like all the Joneses. Ryan is winning because he LOVES school, he LOVES learning and he happily goes to school every day even though at times he is intimidated by all the social rules that are either too hard for him to understand or too difficult to conform to behind those school walls. Ryan is winning because even though he doesn't fit in, even though he doesn't conform, and even though he doesn't have the faintest idea who the Joneses are, Ryan continues to succeed by just being him. Jones who?

Ryan has worked so incredibly hard to do what the neurotypical society expects of him in some ways, but, there is no one I know who has remained more true to who he is, who he is meant to be, and who smiles happily and proudly with that decision. I know there are days it is difficult for Ryan, I know there are days he has "mixed feelings about his ASD diagnosis", and I know there are occasional moments, where for a fleeting second he wonders what it's like to be a Jones, but, I think on most days, in most moments, Ryan could care less if he ever rolls the dice and takes a turn playing The Imitation Game.

 He wins. We lose.

There was a quote from The Imitation Game movie that I believe is so profound and so true, that every time I read it, write it, or say it, I see a beautiful 13 year old boy with an amazing future. After Alan had suffered endlessly at the hands of his classmates, the Joneses who he refused to keep up with, Alan's one and only friend said, 

"Sometimes it is the people no one imagines anything of, who do the things that no one can imagine."

By keeping up with the Joneses, by playing The Imitation Game, we may feel like conforming means winning, but, in the end, it is often those who stand apart, those who are different, those who remain true to themselves, and those who "no on imagines anything of" that wind up winning by going on to do the things "that no one can imagine". 

As the tears rolled down my cheeks watching the final scenes of The Imitation Game, I found it so utterly tragic that Alan Turing was forced to play the game and tragically lose, just so others could win. I can't help but wonder what other contributions Alan would have made had society just accepted him as he was. Clearly, deciphering the encrypted Nazi code, ending a World War and saving millions of lives just wasn't enough. I wonder what is?

If you have a child with AWEtism, then you know, there are good days and bad days, autismy days and non-autismy days, grateful days and resentful days. You have days where autism takes a back seat and days where autism is not only sitting up front with you, it's in the driver's seat. 

Last week was one of those autism is in the driver seat kind of weeks, so I lashed out a bit. I gave you all a list of the sometimes insensitive, rude, and ignorant comments said to me as a mother of an autistic child advising you on what NOT to say to mother of a child with autism. I won't apologize for my words because, well, last week I needed to say them and it felt good....real good. This week, however, I have thrown autism in the trunk and can barely hear it's protests to move back in the driver's seat next to me. Now that autism has been somewhat silenced, I realize that it wasn't fair to tell everyone what NOT to say to a parent of a child with autism, if I don't give some advice on what TO say.

I have to be AWEnest, it was harder to remember some of the kind things I have heard over the years. That's not because there weren't hundreds of beautiful, kind, and encouraging words said to Ryan and to me, since we first heard The A Word, but, as a mother who loves so deeply, so viscerally, it tends to be the hurtful, unkind words that leave a permanent, deep tissue kind of scar that takes so much longer to heal.

Just like every child is affected differently by an autism diagnosis, each parent is also affected differently. A comment that I believe is kind and encouraging, another parent may see as rude and condescending. Needless to say, I can't give you an exhaustive list since every situation is different, however, I have come up with a few things people have said to me over the years that clearly left a mark and not a scar. So, this is a list of things TO say to a parent loving a child with autism that made me smile and want to hug them rather than hit them or scratch their eyes out. The one thing to remember, regardless of the child or the parent, is to always be accepting, be aware, and be kind. 

1. "Wow! I can't believe how far he has come!" Even if the distance from where he was to where he is seems miniscule to you, chances are it is a HUGE, expansive distance to my son and me. Commenting on progress is a beautiful thing to say, but, only if you mean it. Only if you really see progress or change. We mothers are like dogs, we can smell your fear in an off handed, don't know what else to say remark. So if you do believe it, then say it. Tell us. And be prepared to be hugged.

2. "He is so good at....(insert anything here)." Whether it's a perfect Jim Carrey imitation, how long he can sit watching the same episode of Thomas the Tank Engine and recite every word perfectly, or his ability to memorize all the details of every earthquake in California's history, point it out. Point out the positives. See the positives. We see it. We know it. We love when you do too.

3. "My friend's, sister's, cousin's, great aunt twice removed's son has autism and he is in college now." Yeah, we know that your friend's, sister's, cousin's, great aunt twice removed's son is not our child, and we know that autism is a spectrum of strengths and struggles, but, hearing success, hearing good news, and having you share that in a kind, accepting and compassionate way, makes us love you, even if we don't know you. I hope you like hugging strangers because this may get you an even bigger hug than #1.

4. "Is there anything I can do to help?" Asking this question in the middle of aisle 6 in the busy, loud grocery store where our child is currently having a huge sensory meltdown as we try to calm him down and discreetly scooch the glass shards from the spaghetti jar that just missed your head under our cart, rather than staring at what you believe may be an "undisciplined child" having a temper tantrum, may possibly make you the hero in a blog story that goes viral on social media three hours after you get home from the grocery store. We know people are staring. We know people are judging. We know people don't get it. That's why those eight simple words from just one person are beautiful. Oh, and sorry about the spaghetti sauce on your new shoes.

5. "He feels so much, doesn't he?" Yep, I love you and I'm going to get us matching BFF necklaces. Today. Now. This is a kind, compassionate and understanding way to say that when you see our child crying easily, melting down regularly, and being terribly inflexible, you are letting us know that you recognize that there may be more than meets the eye and that our child is not bad, and neither are we.

6. "He is fascinating." Not weird, not odd, not quirky. The way his mind works is fascinating and often has me in AWE and wonder. I love knowing that you see his mind as extraordinary and not as something that is broken and needs "fixed".

7. "He really loves you." Yes he does. There is such a misconception that children with autism don't feel love, that their emotions are too bogged down by autism to "feel", but, believe me, they feel love, they know love, they give love. And on days when it's hard, on days where we have lost our patience, raised our voice and dried countless tears, we don't feel very loveable, so, it's great when others see and feel that love too. We know that our child loves us like no other and although that love may look "different" it is never to be trivialized or minimized.

8. "I wonder what he is thinking?" O.M.G. If you only know how many times a day I have wondered the VERY same thing. "If only I could get inside his head", "If I only knew what he was feeling", "If only he would let me in" has crossed every parent's mind countless times. Knowing that you take the time to wonder too, well, you have just gone up higher in rank on the Favorites list on my iPhone.

9. "What is autism and why do they call it a spectrum?" Yes, maybe we are tired of talking about The A Word, maybe we want people to see past autism and just see our child, but, we will never turn down an opportunity to educate someone about our child and debunk the "He doesn't act like Rainman" myth. So please, ask away. 

10. "He has taught me so much!" These kids see the world differently and if you take the time to get to know them, really get to know them, you will open your mind and your heart to their world and you will be better for it.

11. "I brought wine." Even though you might not fully understand what loving a child with autism is like, the fact that you are here, on our door step, holding a bottle of wine and trying to understand, well, there are no words to express our gratitude. We love that you feel like we are in this together, so grab two glasses while I get the bottle opener.

12. "I have Velveeta Shells and Cheese (or whatever the one and only type of food is that child will eat)." You win. Game over.

When trying to decide what you SHOULD say, keep in mind that these children and adults with autism may have severe language deficits and they may not be able to SAY a word, but, that does not mean they aren't communicating with you. Take their lead. Maybe no words are necessary. Maybe you don't have to SAY anything. Maybe it's just a kind smile, a door held, making eye contact with us or a kind "hello" to our child. However, if we initiate the conversation, if we say the words, "My son has autism" just give us a knowing look, a kind smile and say, "How is he doing?". We may say "fine" or we may break into a 10 minute long discussion about how far he has come and how far we know he will go. Whichever it is, trust me when I SAY, we will always remember that you asked.

For many years, after hearing The A Word, I still had trouble actually saying The A Word. And forget about me EVER uttering THAT word in the same sentence with the words, "Ryan" or "my son". Nope. Just couldn't do it. Denial stood right next to me and every time I thought I was ready to say, "My son has autism", Denial would clamp her hand right over my mouth, and AWEnestly, I would let her.

So yeah, even though for months I was able to summon the words, "My son has autism" to the very tip of my tongue, it took a while for my heart to catch up. Once I was finally able to remove Denial's hand from my mouth and no longer tremble when saying The A Word, it didn't take me long to discover that people had almost as difficult of a time hearing me say, "My son has autism" as I had saying it.

When you say, "My son/daughter has autism" people don't know how to respond. Most folks know not to say, "Woohoo!" and high five me, so many people almost become autistic themselves. They fumble for their speech, they turn their gaze away, they make horrible social blunders, and then quickly try to escape an uncomfortable situation.

We get it. We know you are at a loss for words. We know you don't know what the right response is. We know you feel awkward, unsure and really, really wish you had never stared rudely and commented on our child's behavior, but, once the cat is out of the bag, you can't pretend you didn't let it out. And neither can we.

So during this month of Autism Awareness, I thought I could help those dumbfounded, awkward, at a loss for words people out as much as I could. Seeing as how every situation is different and every child with autism is different, I may not be able to tell you exactly what to say, but, I can give you some helpful hints on what NOT to say.

1. "But, he looks so....normal?!" Umm, ok....thanks? I'm not exactly sure what "normal" looks like, but, I think my kid is gorgeous.

2. "Are you sure he's autistic?" Yes, yes, I'm sure. I realize if he isn't spinning, flapping, asking to watch Judge Wapner or yelling, "Bazinga", he may not seem autistic to you, but, the 200 specialists we have seen, trying to reassure ourselves of that very question, confirmed that he is indeed, autistic. 

3. "What do you think caused it?" We don't know. We wonder, we question and we agonize over everything we did, everything we ate, and every place we went while pregnant. We spend countless hours blaming ourselves, the environment, genetics, etc, then we finally realize, what caused our child's autism isn't nearly as important as what we are doing to support him. We want you to realize that too.

4. "Ohhhhh....what can he DO?" I said, he was autistic, not a circus monkey. We realize that there are misconceptions that all autistic people have some sort of exceptional ability, and although some do, most do not. So when you ask a mother this, not only does it reinforce that her child is "different" in the neurotypical world, it makes her feel like her child is "different" in the autistic world too, so just don't. 

5. "Maybe if you just provided him with some discipline." Duck. If you are stupid enough to say this, then either wear a face mask or duck, very, very quickly. Autism is not caused by poor parenting or a lack of discipline and what you are witnessing is NOT a temper tantrum. What may look like an "I'm not getting my way tantrum" is a sensory meltdown by a child who cannot tell his mother what is hurting him, how he feels, and how to help him. This inability to help our child already feels like a punch in the gut, don't add to our pain with your ignorance and judgemental crap. We will hit you, so seriously, duck.

6. "I try to talk to him, but, he always ignores me. Maybe you should get his hearing checked." We have. He is not deaf. He hears you. He sees you. He knows you are there. Just like he knows when you don't see him, when you don't hear him and when you give up on him. Just because he does not speak to you, does not mean he isn't trying to communicate with you. If you say this, hopefully, the mother will say that.

7. "Maybe he just likes to be alone." He may "prefer" to be alone, but, that doesn't mean he "likes" to be alone. Being alone is easier than trying to understand facial expressions, body language, and conversations that are difficult to understand. Watching them be alone hurts, having people assume they "like" being alone, and letting them alone, hurts even more.

8. "He's not thaaat bad." I didn't say he was bad. I didn't say he was broken. I didn't say how he sees the world is wrong. I said he has autism. "Different" is not "bad".

9. "He'll eat when he's hungry." No. He. Won't. (Duck again). And let me ask you, would you test your child with this theory? Would you wait him or her out for days and days to see how hungry he gets before he will eat what is put in front of him and not the food his sensory system tells him he needs? Stupid. Hateful. Stupid.

When you first hear The A Word, it is usually followed by The B Word....But. Then The B Word is traditionally followed by The C Word...Can't which inevitably is followed by The D Word...Don't and if you have a mouth like mine, it's pretty logical that immediately following The D Word comes The F Word (no need to spell that one out).

This alphabet soup may come from a well meaning doctor, therapist, parent, or a freak you out internet site. I'd imagine the words following The A Word are difficult for a professional to say to an already terrified parent. I'm sure there is probably a fine line between being AWEnest and trying not to crush that parent's dreams of his or her child's future with a few letters of the alphabet. Regardless of how hard it may be to say The A Word, I assure you, it is much harder to hear it.

Let me give you an example of how the conversation may go....

"Your son has an Autism Spectrum Disorder. Autism is a lifelong, pervasive developmental disorder which means it will impact many areas of his life. Your son is very bright and he will do well in school, BUT, chances are high that he will struggle socially. Your son is progressing nicely in many areas, however, I CAN'T predict if he will be able to go to college, hold down a job, live on his own, or have a family. Due to the core deficits of an autism diagnosis, DON'T expect him to develop at the same pace or in the same way as his peers since autism is a LIFELONG PERVASIVE DEVELOPMENTAL DISORDER."

Cue The F Word here.

Then there are the well meaning parents. You know the kind, the Debbie Downers and the Donna Doomsdays. The parents who you see making a beeline for you in the parking lot of your child's social skills class and you quickly duck under the closest car giving little to no thought whether the car you seek shelter under is running or not. These parents may mean well, but, they live in fear and perpetuate that fear by sharing doom and gloom with everyone they see.

Even if in between all the A's, B's, C's, and D's, there are other letters like Progress, Therapy, Success, Support, and Resources, when you first hear The A Word, it's hard to hear any other letters, but, A, B, C, and D. I was no different. For quite some time, I only heard Autism, But, Can't and Don't, which lead to a lot of tears, fears and mumbling of the letter F.

Whether it was from a specialist, a parent, or a chat room the word that followed The A Word that I heard, read and sadly believed the most, was The B Word.

"Your son's receptive language is good, but, his expressive language is poor."
"Your son will struggle socially, but, he may have one or two friends."
"Your son may do well in math, but, reading and writing will be difficult."
"Your son's autism may not be so obvious as a child, but, it will as a teenager."
"Your son may graduate from high school, but, he may struggle with independence."
"There is no cure for autism, but, with support, your son can live a relatively normal life."

If only I had known. If only I weren't so sucked in by the naysayers. If only I weren't so scared, this is what I would have believed when it came to both The A Word and The B Word....

"My son has autism, but, it does not define him."
"My son may not look at you, but, he sees you."
"My son may not show love in a way you understand, but, he feels it."
"My son may not be popular, but, he is loved."
"My son may be different, but, he is not less."
"My son may struggle, fall down, and hurt, but, he lives."

Even though Ryan knew all his letters, even though Ryan at some point and time probably heard every A, B, C and D, he has refused to listen. Ryan does not live in fear of words or letters, and he will not stand by and let Autism, But, Can't and Don't determine his future. There are no letters, no words, no specialists and no predictions that can ever determine how far Ryan will go or how big he will live. 

If the one and only thing my son takes away from all my encouragement, all my pushing, all my fighting and all my advocating is that But, Can't, Don't or even Autism can dictate how Ryan lives his life. If Ryan hears this, if Ryan believes this, then I know so many more letters, so many more words, like Success, Happiness, Confidence, Fulfillment and Pride will all be words Ryan will hear loud and clear. 

Ryan has autism. Ryan will always have autism. Autism does make some parts of life more difficult for him, but, Ryan works hard everyday to foil the negative connotations that are associated with The A Word as I stand by watching with pride and AWE. As far as Ryan is concerned, when it comes to his life, there are no buts about it.

And here is the proof....