AS: “Not a Revelation”: How A Few Aspies Recognize Their Diagnoses

The Big Bang Theory came in handy yesterday. In a group of four 19-year-olds with AS, we were discussing how to disclose their diagnoses to a girlfriend (which none of them have just yet). One of the boys had just debuted his lengthy speech to the group for their review. His proposed setting for this disclosure was in the office of his psychologist. His rhetoric was over-the-top, apologetic, and (as the guys noticed) almost-embarrassed. To say they objected quickly is an understatement.

As we discussed the major points of contention — location,  timing, and, most generally but importantly, what to say — one thing became very clear to me. Each of the guys had a very different “attitude” about their diagnosis, which many had since before kindergarten. As I began to understand each guy’s particular stance, I made a quick chart on my whiteboard.

AB — BFD — ??

PH — OMG — ??

JP — NBD — ??

If you are not familiar with the “text” language, you might find this a bit elusive, but the guys got it. The point of our ensuing discussion was not to change their attitude about their diagnoses, rather it was to highlight the impact on others — making those ??s real. One of the guys felt the “OMG” attitude lead to unnecessary panic on the part of the other person. He felt that it reinforced some of the stereotypes of AS. PH stood by his attitude, believing it was a relationship changer. JP then said, “It’s not like it’s going to be a revelation, dude, just a disclosure.” PH was dumbfounded, initially confused by the statement and ultimately offended. “What do you mean that she will ‘already know’? I’m very high-functioning.” And he is, for whatever that means.

We’ve touched on this topic before in group — what elements of their diagnosis are apparent to others. It’s a difficult topic for them for reasons related to the struggles of AS, such as perspective taking, and related to their own self-confidence on the issue. For this topic to return at this point was logical but oh-so-difficult. We talked about how girls have the ability to recognize subtle differences, and that girls might not have a name for what they see but they will recognize something.

JP said, “It’s like Sheldon from the Big Bang Theory. You know he has Asperger’s as soon as he walks in the room.” He couldn’t articulate specifics, so I pulled up a two-minute clip of Sheldon at the movie theater. Providing a short synopsis of that two-minute clip won’t do it justice, so I suggest you view it if interested. Sure enough, I just “knew it” and JP just “knew it”. “Who talks like that?” laughingly asked JP.

“I do,” PH said. And, without skipping a beat, JP replied, “Then she’s just know, dude, and you’ll just need to name it. Like I said, not a revelation.”

 

What Gifts has Autism Put Under Your Tree?

You tell me!

 

The Best Autism Experts

Simon Baron-Cohen, Eric Courchesne, Nancy Minshew, Tony Attwood, Jed Baker, Brenda Myles. These are the autism experts of today. They have researched etiology and treatment efficacy, written articles and books, and presented at conferences. They are sought out for their facts and opinions. They have dedicated their lives to understanding the world of autism. I would be lying if I didn’t admit to you that I’d love to be on that list some day. Such esteem would mean that I am respected and have seemingly worthwhile opinions to express.

Their opinion, like my opinion, is the product of the neurotypical skill of perspective-taking. We believe this skill gives us the ability to step into the shoes of others and understand what they feel, why they feel what they feel, and everything in between because we share a common human experience. I wonder, though, if this common experience extends to the spectrum. Is it naive to think it is? Or, is it arrogant to think it isn’t? Are an NT’s life and an autie’s or Aspie’s life that different? That similar? I could argue both sides, really, but I think that the answer lies somewhere in between — both similar and different. Similar in the ways that all humans struggle through and enjoy every day life. Different in the ways that make humanity so frustratingly amazing and amazingly frustrating.

The spectrum life and the NT life are separate but equal.

I am a student and always will be a student in the world of ASD. I will never be an expert, no matter how much I’d like to, because that title and honor applies only to who don’t have to take off one pair of shoes to don another. Don’t get me wrong, I won’t stop trying to put on those shoes because it is that process that teaches me, causes me pause (and sometimes pain), and helps me realize that many times those shoes fit perfectly.

 

The Top 10 Reasons to Own ASD

Every once in a while, I receive an email from the parent of a new client a few days before I see them for the first time. “Dear Ms. Holverstott, My son, X, and I will meet you next week. We don’t talk about X’s diagnosis in front of him. How do you handle this situation? We ask you not to talk about the diagnosis in front of X. We look forward to meeting you, X’s Mom and X.”

Great, now what?

Everything about my office speaks of ASD. A bumper sticker says: “I love someone with autism.” Hundreds of books about ASD fill my bookshelves. Puzzle pieces decorate my wall. Certificates of completion for autism-related conferences hang framed. My business card displays my title as an autism spectrum specialist. I always wonder if I need to de-ASD my office to respect such an email’s wishes.

During the initial consultation I often ask new clients, “Did mom/dad tell you why you are here?” A vague “no” or “I don’t know” is often the response, which leads to: 1) parents quickly explaining the goal that inevitably relates, directly or indirectly, to challenges presented by ASD, and 2) my explanation of who I am, who I work with, and what I do. ASD is not every other word, but during this first session, odds are, it comes up.

You might guess that subterfuge is not a comfortable game plan for me. I see no shame in autism. No embarrassment. No regrets. No cure. As Kathleen Seidel has said, “Autism is as much a part of humanity as is the capacity to dream.” I embrace ASD with open arms, and I am blessed that most of my clients and their parents do, too. As one mom of a seven-year-old recently said, “We own it.”

As I see it, here are the simple (and not-so-simple) benefits of owning ASD and all its glory:

1. No whispering about the “a-word” required.

2. Siblings can learn, understand, respect, and advocate.

3. Parents can find respite, knowledge, and love in other parents.

4. Kids understand why some skills are hard and others are easy.

5. Self-advocacy.

6. A positive self-concept.

7. Knowing the reason for visits to doctors, therapists, and other specialists.

8. More effective, informed services with buy-in (hopefully) from the Aspie or autie.

9. The ability to look to role models and other inspirational personalities.

10. The chance to knowingly become a role model and story of success.

How do you “own” ASD?

 

What Would You Do If You Were Me?

I’m sure you have been asked that question before. Perhaps even more than once. Little do you know how blessed you are.

Most people know that people with autism spectrum disorders have widely ranging, but typically impaired, abilities at stepping into the shoes of others. Those who know individuals with ASDs know that even the recognition that others wear shoes is a monumental, meaningful joy to be celebrated. You and I both know that those shoes might look different, feel different, smell different, etc. You and I both know that those shoes cause different feelings, attitudes, thoughts, and perspectives. Individuals with autism have to learn these differences, feelings, attitudes, thoughts, and perspectives that we learn and learn from so easily.

Noted autism researcher Simon Baron Cohen has labeled this specific deficit “mind-blindness”, which can be described an inability to develop an awareness of what is in the mind of another human. This theory asserts that children with ASD are delayed in developing ToM, which normally allows developing children to attribute mental states – beliefs, intents, desires, pretending, knowledge, etc. – to oneself and others and to understand that others have beliefs, desire, and intentions that are different from one’s own. As a result, autistic children often cannot conceptualize, understand, or predict emotional states in other people. It is not necessarily caused by an inability to imagine an answer, but is often due to not being able to gather enough information to work out which of the many possible answers is correct. Mind-blindness is the opposite of empathy.

So, perhaps now you can understand my amazement and absolute glee when a long-term, young adult client with autism asked me, “What would you have done if you were me?” He had become violently upset at a YMCA party over the weekend. A power outage stopped the music, which stopped the party contests and, ultimately, removed the prizes. A promise was made to restart the music. That promise did not come into fruition as designed. Just another change that produced another, more destructive power outage – an emotional one for my client.

The power flickered on Sunday when he emailed the details of the incident and restarted tonight when we discussed the alternatives – my alternatives. Then, we tailored my alternatives to Ben and his autism.

So, when anyone asks you that question, spectrum diagnosis or not, don’t take that question for granted.

 

 

The Words Your Little Professor Doesn’t Know…But Should

Children on the spectrum are often lacking in hip, trendy language to “sound” cool. Knowing how to drop an epic own is priceless in the ears of peers who are worried about sounding cool. If your autie or Aspie is lacking in this area, I’d recommend you study up with Urbandictionary.com and pass the valuable information along. (Please be forewarned that UD is not the most appropriate place. Understatement.) For now, here is your starter list.

1. Epic: Can be used to refer to anything but is usually referring to a particular event or action. The most common usages are “epic win” or “epic failure.” Occasionally people use the phrase “Epic ___” as a stand-alone sentence or phrase. It has been overused as “the” catch phrase used to describe a situation, person, event, movie, talking trash,etc. The abuse and birth as a catchphrase has its origins among avid gamers and pretentious English majors.

2. Fail: Either an interjection used when one disapproves of something or a verb meaning approximately the same thing as the slang form of “suck”.

3. Own/Pwn/Ownage/Pwnage: To win a round in a game (usually a video/pc game); to beat someone at a game (usually a video/pc game); to be better at something than someone (usually a video/pc game).

4. Chillaxin’: The state of being totally relaxed and chilled, beyond that of being just relaxed or chilled.

5. Cool Story Bro: A phrase sarcastically used to indicate one’s disgust or indifference towards a story.

Please add any colloquialisms that might help!

 

I’m Done Asking for Autism Awareness

Please tell me how someone has NOT heard of autism? If you’ve been living under a rock, there’s a good chance a kid with autism likes the texture of it and has tried to pocket it for his collection. If you’ve permanently lost your remote control or don’t have access to a television, DVD, or VCR (do they still make these?), you’ve missed some seriously good movies and shows lately — many of which even showcase the autism spectrum (Parenthood, Temple Grandin, The Big Bang Theory). All in all, there is NO excuse for such blatant and ignorant disregard of humanity.

My brain is ablaze because of a comment that I  apparently had to hear as I opened the waiting room door at my clinic: “What’s wrong with these kids?” At that particular moment, they were too loud. But, more generally, nothing. The real question is: “What’s wrong with you?”

As you might guess by that statement, I’m as judgmental as the next person. I like to people watch. I look through magazines and comment on clothing. I watch “What Not to Wear” and wonder what in the world some of those ladies were thinking. I worry about my own personal presentation and the thoughts of others. My largely neurotypical abilities are shining through. In contrast, my four little boys with autism aren’t equipped to recognize, understand, and care about what others think just yet. And, some days, those are skills I’d love to bypass teaching.

I’m not asking people to cure it, recognize it, donate, wear a puzzle piece, or even “have a friend” diagnosed with it. I’m asking for the benefit of the doubt, some understanding. I’m asking for empathy, that neurotypical trait so many with ASD struggle with. I’m asking for acceptance. And I might be done asking.

 

The #Autism Spectrum, the #iPad and #Kinect, and My #Christmas Wish

Like most of you, I’ve been holiday shopping, trying to deliver meaning with a gift. Commercials, advertisements, and word of mouth are abuzz with the iPad and the Kinect. If you want one or know someone who does, let’s take a minute to consider how the “hot” gifts for the season are possibilities because of and for those on the autism spectrum.

1. iPad: A quick Google search demonstrates what opportunities the visually driven technology of the iPad and iTouch have to offer people with ASDs. Shortly after its debut, the iPad was featured in The Huffington Post. A mother of a child with autism reported how the app Tom the Talking Cat repeats back out loud whatever you say, enabling kids to hear themselves as they tell a story. Further, Shannon Des Roches Rosa at Squidalicious.com writes of her son, “Before the iPad, Leo’s autism made him dependent on others for entertainment, play, learning, and communication. With the iPad, Leo electrifies the air around him with independence and daily new skills.”

The uses and the possibilities of this technology are endless. The limitation is price. I’m going to take a not-so-big leap and suggest that much of the genius behind the innovation at Apple is rooted in individuals with ASD.  I’d love to see Apple pay it forward (or backward, depending on how you look at it) by donating some of that wonderful technology to the people who need it most — those who can not communicate without it.

2. Kinect: Let’s face it. Kinect changes every thing. Old-school, controller-based video games, in general, have opened a social world to my clients that was non-existent in the not-so-distant past. Not only do video games provide a conversational topic and a playdate activity, they also demonstrate commonalities and prowess to peers.

Can they be overplayed? Absolutely. Can they introduce some ideas, scenarios, and visuals that are not always appropriate? Without question. But these negatives are off-set by bringing family and friends together in one room and reducing the motor-challenges prone to individuals with ASD and plaguing the  two-remote system of the Wii.

Oh, and by the way, I have three clients in college programs for video game development.

The ASD-iPad-Kinect benefits are clear. What is not is how to put this technology in more hands. If you have ideas or successes in this area, please let me know.

 

Black and White and Red All Over: Lessons from Paintballing

“I’m going to get you mother-f#!$#%!” was the first thing I heard as I watched four boys with Asperger’s and their four friends join about 100 other males prepare for battle. My first thought was one of relief. That voice isn’t familiar — not one of mine.  And I knew what “my” boys were thinking — that guy just broke a rule, no cursing. As the boys stood with their masks, protective gear, and paintball guns, I was internally placing bets with myself — a great way to keep from losing money. 

First bet: Within 30 seconds, someone will come back to our table out of ammunition after a trigger-spraying of the wall. Second bet: All of the “don’ts” from our 5-minute “lesson” from the teenage referee will happen simultaneously. In essence, a paintball rifle will be used as a bayonet, club, and choking device to yield an up-close kill shot to the head. Third bet: A hit will engender an insurmountable meltdown leading to a hasty departure for all. I know what you are thinking — the biggest bet of all is taking the boys in the first place. You got me there.

I admit, as we spent four weeks planning on this visit to an old limestone refinery in Kansas City, I thought that perhaps I was crazy. The parents sure did. Putting GUNS in the hands of these boys so prone to anger and aggression? Allowing them to SHOOT each other and random strangers? Preparing them for WELTS that would ultimately bruise? But the boys were so excited. It was contagious and hard to disagree with.

To say today went smoothly was an understatement. The situation was stacked against success. We were late to the cave due to the joys of GPS — a cardinal sin. Loud, echoing caves and an odd stench bombarded us as we walked in. Rapidly and randomly sputtering guns made for an auditory nightmare. Cursing, shoving and competitive players threatened to trample the boys. Our “introduction” to the sport was likely a lesson on how not to explain anything to anyone with AS. But, miraculously, after almost two hours, we parted with our guns somewhat sore and completely happy. Imagine my shock. In underestimating Asperger’s, I underestimated the boys. That, unto itself, was my first lesson. Here were a few others:

1. My clients like the concept of shooting (i.e. video games, Nerf gun, archery, etc.) but today delivered the reality. And that reality was scary at times. The boys pretended to get hit to get out and take a break. I don’t blame them. Hopefully, though, they have a new respect and healthy fear, rather than just awe and desire, for the use of guns.

2. The referee that taught the Paintballing 101 was bombarded with good-old Aspie questions. You know — what’s the gun made of? What happens if I shoot the gun with my plug in? How many balls fit in the canister? Surprisingly, he took it in stride, laughing with the boys, answering their questions honestly, and sharing in their enjoyment. These boys were exactly like the 15 before and the 8 after — eager, curious, and excited.

3. My bet that a direct hit meant a quick finish proved true and false. (I took the money away from myself and then gave it back!). A quick finish didn’t have us piling in the car. The boys reloaded, rested, and waited for the next round. Their ability to cope was bolstered by the rules of the game — you hit, you’re out. Black and white (and welts all over).

When I asked the boys what part of the activity they enjoyed, one answer stood out. ‘

“Monday morning.” The other boys and I were confused. “Why?”

“I’ll be able to answer for the first time ‘What did you do over the weekend.’”