Do I Know You?

I had the privilege of speaking with Dr. David Black, Ph.D., a neuropsychologist from the National Institute of Mental Health in one of our William & Mary Neurodiversity Working Group meetings. Dr. Black and I had never met before yesterday. However, there were some things he new about me that only family and very close friends know. Well, that’s a bit odd, don’t you think? Stranger still, he knew some things about me that only I knew!

The Jig Is Up

Dr. Black began to speak of a friend of his that has Asperger’s Syndrome. And while he spoke, he off-handedly mentioned some attributes of this person. Certain characteristics that are generally attributed to autistic people. Now, I’m not cynical or anything, however, I was waiting to hear the usual (stimming, sensory issues, attention difficulties, social delays/deficits – you know, the stuff everybody knows).

Dr. Black was about to get my attention (and that’s not an easy thing to do)…

… And he did this by describing his friend:

• Body Armor. His friend is a bit bigger and stocky, maybe a bit burly. He tends to stalk instead of walk. And with a bit of a scowl, dissuades people from approaching him. The burly demeanor, stalk, and intimidating scowl are his body armor.

• He has a monotone, nasally voice

• He tends to talk non-stop about topics of interest to him and has to verbally remind himself to give the other person a chance to speak.

• He makes little to no eye contact.

Sounds like Dr. Black was describing me:

• Body Armor? Yep, I use it… daily! I usually have a very unwelcoming look – not quite a scowl – more cold than anything else (refer to picture above). And I’m slightly on the tall side. I have certain pairs of heels that put me close to 6 feet. I find that height can be quite intimidating, and while I’m not a fan of wearing heels, there are certain places I won’t be caught dead without ‘em (generally social gatherings with lots of women). I have an aggressive walk. I don’t stalk, but I move quickly and with purpose. People tend to move when they see me coming toward them. And I never make eye contact with people as I pass.

• Nasally, Monotone Voice? Are you kidding? I thought I invented that ‘nails on a chalkboard’ sound (me and Fran Drescher, right)!

• Non-Stop Monologues? For sure! And I also find that I am always either redirecting or interrupting what others have to say . You see, I tend to find that the topics others want to discuss are frivolous, boring and impossibly tedious. Wait, that sounds familiar… Oh yeah! Isn’t that what everyone is always saying about autistic dialogue (big smile and a wink)!

• Eye Contact? I’m about 50/50. If I know you really well, I generally won’t look you in the eye – maybe intermittent peeks to make sure you haven’t fallen asleep or left the room. However, with people I don’t know as well, I force myself by silently chanting: “Look ‘em in the eye. Look ‘em in the eye.”

Suit Up!

I feel confident saying that we all know about the one-sided conversations and the eye contact issues I mentioned above. But what is the purpose of body armor and what exactly is involved  (and more importantly, how did HE know)?

Body Armor is whatever you physically employ to combat socialization. The face is probably the most important piece of the armor because people tend to look there first. I suppose they are searching for acknowledgement, a connection, emotional recognition, etc… My face rarely conveys any of these things. I stopped (for the most part) making animated faces at people’s stories years ago. Why? Because I learned the more emotion I showed on my face:

• The more likely people were to seek me out

• The longer and more emotional (happy, sad, mad) the stories got

• People mistook MY reactions as encouragement… oops

Unfortunately, the lack of animation has given my face the overall appearance of boredom/simmering anger. Well, what else am I suppose to do? I mean, I have to protect myself, right? I truly am a friendly person, if you weren’t so afraid of me you would know that (laughing)!

Seriously though, Dr. Black, how am I suppose to keep up the charade of Ticked Off Amazon Woman if you keep telling everyone about body armor?! Eventually word will get out and everyone will realize it’s just a ruse. A coping/defense mechanism. That we’re not really mean, scary people, we’re just scared to death someone might actually approach us and begin a conversation! Then what?!!

And YES, Dr. Black, the frosty looks are employed to deter others and avoid social interaction! Well done you! (read as much sarcasm as you can muster here)

It appears when you aren’t overly smiley, people think you’re mad. Not true, but I don’t engage in that argument anymore because I usually end up mad through my efforts of reassuring the hurt party that I wasn’t mad to begin with. Ugh! Are we still wondering as a society why the underlying current of Asperger’s is irritability?!!

Social Interaction Is An Important Component In A Well-Rounded Person

i know. I Know! I KNOW!! However, that doesn’t change the fact that social interaction is difficult and anxiety-inducing. And it doesn’t change the fact that my heart pounds, my chest tightens and I have to ‘psychologize’ myself for hours and sometimes (intermittently) over days to prepare for a social event that is unknown to me. Or that I practice speculated dialogue in the bathroom mirror so I know the people that will be there and that I’ll know exactly what they’re going to say to me! Or that my mirror conversation is a technique I use to trick myself into feeling comfortable once at the event:

“Come on Renée, you know these people. You’ve been talking to them all week!”

How Did He Know These Things? He Had Never Even Met Me!!

No, Dr. Black doesn’t know me personally, but he seems to know a thing or two about autism. Well, he is a researcher at the National Institute of Mental Health in the Pediatrics and Developmental Neuroscience Branch, so he probably knows more than a thing or two (grin)! And I liked him – shocking, I know. The information he provided was thoughtful, insightful and dead-on accurate (in regards to the autistic members in my family anyway). Dr. Black did not try to impress our group with published facts, figures and statistics – thank God! I hate when people do that, especially when it’s public information that I can Google! But what struck me about him was that he talked mainly about a real life for people on the spectrum: Education, social lives, occupations, what can be done to support autistic people (in this case students) so they can lead fulfilling lives and have a future to ‘write home about!’ And then it dawned on me: This man is meeting with us and discussing ideas on how we can help people on the spectrum have a life. Wait a minute… He’s talking about my kids (your kids)! Because the work we do now, All Of Us – yes, you, reading this post – lays the groundwork for a real future.

But wait, that’s not all…

All of that is ridiculously important and I couldn’t agree more if I had come up with it all by myself. It’s what my book, my blog and my advocacy is all about! However, he took it one step further in my autistic eyes, and I don’t even know if he realized it:  Dr. Black proceeded to share a story about an autistic friend. Did you hear what I just said?!! A friend – someone with whom he shares personal experiences and information. Hold the phone – now this is something, isn’t it?! Not only is he a professional in the field, but he knows real live autistic people on a personal level?!

Someone Get This Man A Medal. Or A Book Deal. Or At Least A Sticker!!!

I’ve said it before, people, there are hundreds of professionals (experts even!) out there that eat, sleep,and breathe autism. But unless they take the time to know autistic people – really know them on a personal level – then they are greatly hindered by an absent piece of knowledge integral to understanding autism. I’m not saying they’re not helpful, some might be actual clinicians and have a practice with hundreds of patients, but a patient is not your child, your sibling, your parent or your friend.

I want someone who knows both sides because that person will have a realistic view of life on the spectrum, because they are there for it. A professional, with only clinical knowledge of autism can see a patient twice a week an hour at a time for years, but until there is a personal relationship – a friendship; until he chooses to spend extended amounts of quality time with an autistic person and become a part of their life (an unpaid part) – then he can’t know.

With that said, there are many awesome professionals out there rooting for us, working with us, and doing what they can to better the lives of autistic people. I know a few and have gladly traveled hundreds of miles to speak with them. I think, upon initial inspection, that Dr. Black just may have a spot on this list…

I’ll Keep You POSTED.