Friday, May 10, 2013

Some Answers...Finally

I'm sorry for kind of disappearing for a few days. It has been a busy, and at times overwhelming couple of weeks. I think I will be able to get back to my regular weekly features starting next week, but today I'll share what kind of derailed me, but at the same time got us going in the right direction. And to my family and friends, please don't be angry with me for not telling each of you in person, I've barely had energy to function. I certainly don't mean anything ill-spirited. By sharing it here, I can give everyone a much more thorough explanation one time, rather than a hit-and-miss explanation twenty plus times.  

Approximately eight or nine months ago, I was busy filling out every symptom questionnaire I could find on everything from ADHD, to Giftedness, to Autism, and finally Sensory Processing Disorder. It was this last category that with question after question I saw my children of concern (Zak and Kit) staring right back at me. At last I had found information that pertained to my son and daughter, with suggestions that actually proved helpful and solutions that were attainable. And so without waiting for official diagnoses we forged ahead and found or made ways to help them regulate, chew, climb, spin, bounce and so much more, and we have seen some amazing results!

During this time I gathered all my courage and approached my children's Nurse Practitioner with my concerns. She is a very good Practitioner, I like her a lot. And I really love how she treats my kids like people instead of pests. But even she only listened to my concerns for a maximum of twenty minutes, if that long. Never once asked to look over the questionnaires I had with me and was listing things off from. Then concluded that my son must have AHDH, and my daughter (13 months old at the time) was a master manipulator and I, simply weak willed. I left her office incredibly exhausted, frustrated, and already aware of what the questionnaires she gave me to fill out (2 ADHD, and I think, to cover her bases, an M-CHAT) would reveal, after all I had filled out much more detailed ones online, all of which kept coming back negative.

But I went home, carefully read and answered each question. Then I wrote her a letter. In that letter I told her why I had chosen her to be my children's health care provider. I acknowledged her experience and expertise and emphasized that we both want the same thing for my children, happy healthy futures. I mentioned how difficult it is to sum up years worth of information about two children with very unique personalities and challenges in such a short visit, so obviously there was a lot left out or not explained well enough. I expressed my desire for a thorough exploration of the behaviors my children were exhibiting, since their "symptoms" were shared across a variety of conditions, including the ones we each suspected.

The following day I returned the completed forms to her office, along with several others that were more extensive, plus the ones that I had brought with me the day before that she had not looked at, and the letter. I don't know how extensively she looked at any of it. All I do know is that day, she gave both kids a referral to a local Pediatric Psychologist. I may be forever grateful for that one, relatively simple, act.

Fast forward to now. As it turns out, Kit is too young to see Dr. N, as she is a talk therapist and her clients need to be able to, well, talk. But thanks to her talking with, listening to and getting to know Zak, we now finally have a direction, and diagnosis that was made based on lengthy observation and discussions with my child, and not just assumption.

Diagnosis: Asperger's Syndrome. Very high functioning Autism. With sensory integration issues.

I was certainly surprised. Everything I had read about Asperger's didn't seem to fit my son. But Dr. N. sat down with the diagnostic manual, and took me step by step through the diagnosis and why she felt it was accurate. She emphasized that even within Asperger's itself, there is huge variation of how each child manifests the characteristics. In most areas Zak's are mild, but they are most certainly there. They generally would be dismissed as quirks by those outside of our immediate family. Especially since the area typically most challenging for those with Asperger's, navigating social situations and friendships, is one of his especially high functioning areas. Nevertheless, here at home his areas of weakness were, and are, challenging. At times, engulfing. But I hadn't been able to bring all of these things together to see the picture as a whole until someone a little more removed and aware of how subtle some of these traits were showed me.

So much of what is written about Asperger's and Autism is done so in a very concrete way. Generalities are broadly applied, thus making it very hard for some parents to see their child on the spectrum. For example phrases such as "people with Asperger's have difficulty maintaining friendships" is a blanket statement that  is actually very inaccurate. Simply inserting the word "often" or "some" in that sentence would help enormously. This is an area that Zak has had great success in. He has multiple close friends that very much enjoy his company.

"Children with Asperger's have little to no eye contact" is another misleading statement. That is not always true. Like everything else this varies enormously from child to child. Some have none. Others have enough that most people would not sense a lack of eye contact, nor feel it abnormal for a child. Zak has above average eye contact for someone with Asperger's, but less than a typical child. This was something I had noticed, but I didn't think it enough to mean anything, in part because of statements like the one above.

"Those with Asperger's become intensely occupied, even obsessed with a single interest. They often become 'experts' on their topic of interest and talk extensively about, and rarely of, anything else. (i.e. trains or dinosaurs)." Again, I overlooked this because Zak was never obsessed by any one topic. He was often referred to as our "little professor", but his interests were many and change every few months or so. Turns out this is far from uncommon among Asperger's children. I always assumed that most children generally would talk about their favorite interest for a very long time if no one stopped them. And while I did think it a bit odd for my seven year old to read a 300 page illustrated book on the solar system and planets, multiple times, for fun, and memorize countless facts about it, I just thought he was a little advanced. Especially since during the same period of time he was reading other things, playing with toys, riding his bike. And while I don't remember noticing red flag behaviors like regularly lining up his toys, he did have a special affection for building roads and walls, long ones.

Now though I can clearly track his "special interests" over the years. He was never obsessed with trains or dinosaurs, but he did devour his second and third grade science books long before the school year was over. Had a universe phase as mentioned above. Was fascinated by magnets for a period of time. Went through a paper airplane phase. And has always loved to draw. His longer running interest has been comics. He has literally read the pages off of several Garfield collections. Calvin and Hobbes is printed on sturdier paper, but those books are pretty well worn too. And most recently, his love for all things cartoon has expanded, he now writes and illustrates his own strips. All of this in addition to his ever growing rock collection, shell collection, coin/money collection, bok choy boys, and Legos. Not to mention all of the other things we simply could not allow to clutter up every surface of our home, like empty miniature bubble bottles, and every cool leaf and feather he's ever found.

"Children with Asperger's are typically clumsy, and delayed in the areas of fine and/or gross motor skills." Well no wonder I didn't associate this with my child. He was ahead in nearly every milestone. He's agile and well coordinated. Perhaps though, this may be due in part to the fact that he participated in gymnastics from the ages of three to nearly six, and then again starting last year. Many of the movements and skills that he has learned there are taught in therapy to those who lack gross motor skill or coordination. Maybe we never saw any delays because they were overcome through his physical training. Then again, not all children with Asperger's or Autism are delayed in this way, and he may never have been. I did realize, though, that while not necessarily delayed, he was never particularly smooth at cutting, coloring, or other very precise movements. His handwriting is a little immature for his age and education. And to get the boy to use utensils to eat? Oy! So it's entirely possible that his fine motor skills are a minor problem area for him.

Other more noticeable challenges for him do fall under the category of social deficits. He constantly interrupts, and often clearly has trouble understanding that what he has to say must wait unless it is an emergency. He does not pick up on other people's body language or facial cues that they are done listening or ready to move on very easily, if at all. You have to tell him with very clear and specific language, and even then, he'll comply, but not always understand. Again though, it's not always as intense as what you picture in your mind. I didn't relate it until he was diagnosed, then it seemed so obvious.

Another trait that is common is memorizing entire episodes is favorite shows or movies and repeating them frequently. I didn't think to much of it because I had many movies practically memorized when I was a kid. I thought it was normal. And I thought he just had an amazing memory. He does. But this is often a significant trait in those with Asperger's.

Individuals with Asperger's can often have a sort of "black and white" way of thinking, and a very set idea of fairness which doesn't always correspond with the actual facts or situation. This generally results in honesty and loyalty, but can sometimes lead to difficulties. They may not be the right people to ask if we want to know if those pants make us look fat, and what we really want to hear is a complement, instead of a possible yes. But they generally say what they mean, so when they complement others, it's very genuine. And while some may not always understand puns or nuance, they can have a wonderful sense of humor. That definitely describes Zak.

Another challenge can be emotional regulation. Their emotions can be very overwhelming, even the positive ones. This may be why some often "stim", or engage in repetitive movements, often involving the hands. Zak was never a "hand flapper" though, he is a smoother, a nail biter, and a chewer. This is one area that his sensory issues are manifest and/or overlap. He is very tender-hearted, crying easily when he is sad or disappointed, or overwhelmed. He'll tear up whenever he sees anyone else cry, even if he doesn't feel particularly sad. He is very sensitive to images or music that he perceives as scary, and will have nightmares easily, so we are very careful about what he watches or does in the computer, even with otherwise age appropriate shows or games. And of course when he gets upset or angry, it can be quite intense. He has a tendency to snap at his sister when he is over tired or plans have suddenly changed, and he is not always aware that his tone or comments are unkind or disrespectful. Puberty obviously is likely to intensify some of these emotions even further, so I am very grateful to know much more specifically the kind of strategies and tools to look for to help him learn to identify his own feelings, and deal with them productively before we hit the full-fledged teens.

There is more, but those are the primary characteristics that he manifests. It can be hard for someone who just met him, or only sees him periodically to see all of these. Most people would never know or think that he has Asperger's. But what most people think of Asperger's is incomplete and often inaccurate. I certainly didn't know it could be so complex and subtle.

Dr. N. also emphasised that children with Asperger's are often above average intelligence, and can sometimes use logic to figure out how to deal with or compensate for some of their deficiencies. She believes this is part of what makes Zak as high functioning as he is. Also the way our family is willing to experiment and approach things with somewhat out-of-the-box solutions to his challenges, like we have done with his sensory needs, has helped him develop confidence, and fosters his own problem solving skills. She said that all the areas where he might display a weakness can be taught. And so she is very optimistic about his future. And so are we.

Sometimes parents feel crushed or cheated when their child is diagnosed on the spectrum. And they likely have some very valid reasons to feel so. But in our case, we have found relief and direction. This is not like a car accident where yesterday my child was walking and talking, and then today they are paralyzed, their future having been permanently altered. No, not at all. My son is the same loving, chatty, goofball kid today as he was last week before we had a name and explanation for his little quirks. His future, if anything, is changed for the better, because now we can focus our efforts, and occasionally get some help along the way. Knowledge is power, and I am grateful to finally know.

And to wrap up, here is something important that I have learned this week as I have researched and researched to find out more about it: I have watched probably over a hundred videos of, by, and about children with both Asperger's and more Classic Autism, and do you know what was most apparent me? It wasn't their lack of eye contact, or the way they spoke or behaved. It was how similar they are to every child I have ever loved. Most of these children, smile, laugh, gesture, play, hug, cry, read and go to school. So many of them have siblings who adore them, grandparents who are proud of them, and parents who are over the moon for them. These are real kids with real strengths, and along the way, they also have some more unusual challenges, but they have a lot more in common with everyone else than they have differences.

For those who are curious or have questions about your own child, this is by far the most comprehensive list of traits that I have found so far. This list helped me really see the accuracy of his diagnosis. I will try to post more links to helpful articles another time.

Naturally, this leads one to ask what this means for Kit, since they share a lot of traits. I will address that in my next post. And later, I will tell you how we told Zak about his Asperger's.

I hope everyone has a wonderful weekend. Quick, go hug your kids!


  1. Although they are very often surprising and not what we want to hear, answers are the beginning of a direction. I'm glad to know where I can focus and will do all that I can to help. Love you all.

  2. I'm glad that you have a diagnosis. It'll be a help to you. Just remember though that labels do not define us or our kids. Nothing at all has changed about your kids. They're wonderful, sweet, and smart and have a very bright future ahead of them. Keep posting. It's very interesting.

  3. This is a lot to express yourself with ease and humor and I admire that. I'm proud of all the ways you love your children and actively seek to support and nurture them. I'm happy that you have such a wonderful "other half" and work together to create and maintain a joyful and loving home for the entire family. I hope you keep smilin, Tutti Frutti, and I can't wait to be there for all the hugs n kisses. Love you!