This is going to shock you. (Sarcasm alert. Mothers of Aspies learn to note sarcasm verbally as in “Ty I am being sarcastic right now).
Ty has been officially diagnosed with Asperger’s Syndrome.
It has been such a long road with so many twists and turns along the way but eight years in, I am not surprised to be here. For those of you who were reading my Ty’s World entries last year, you realized that I had already deduced this inevitability. I was just not quite ready to validate the diagnosis yet. Jim and I had to work ourselves through the emotions of that. Jim is of the “nothing is ever always true” camp and he knee jerks at labels. I like to put words to things so labels help me. My friend Liza told me that there are two kinds of people in the world. Lumpers and Splitters. Us relational folk like to see how everything works together. We look through the lens of commonality and how things are mostly alike. Jim is a Splitter. He sees the intricacies of things. He notes the fine details and separates things at the molecular level. His viewpoint is most often one of difference. Opposites attract you know. (Note to Liza: I can’t tell you how often I have been talking to people and said “Lumper” or “Splitter” in my head. I miss you my Lumper friend.)
As a result, it took us several months to arrive at a decision to seek a diagnosis. There were two determining factors. The first was that we realized that educating the people who live in Ty’s World is one of the most important things we can do for him. While we can do that without a label like Asperger’s, it sure is easier just to give people a word that they can relate to (or that they can look up). When I first starting writing those Ty’s World entries last year, I had a lot of apprehension about it. Was canonizing my thoughts on the matter a wise and discerning move on my part? Would it ultimately help my child or backfire on us and harm him? Because of the amazing circle that we have been blessed with, hindsight proved it to be the right course. Our friends and family surprised me with their investment. Not only did they read my words but I saw so many loved ones come across the bridge and meet Ty on his side. They were eager to actively love him and were (and are) willing to do whatever it took. While I didn’t say that Ty had Asperger’s, I did describe it and that information helped other people in Ty’s life better understand the world he lives in and how he relates to them (and how to relate to him as well).
The second factor was that Jim and I think it might be beneficial to Ty to seek out Speech Therapy. Did you know that “Social Therapy” falls under the umbrella of speech therapy and that social therapies can be really useful to children with Asperger’s? This particular therapy concentrates on appropriate socialization and includes things like teaching kids to recognize non verbal communication and how to appropriately engage others. I am still in the “doing my homework” stage but I would bet there will be other benefits (like an Aspie Camp at The Clubhouse Center) that we may want to utilize in the future.
Because I had already done so much research on my own, I decided not to take Ty to a private place like the Melmed Center or Dr. Gentry’s (though I have heard good things about both). Instead I chose Phoenix Children’s Hospital and picked their Developmental Pediatrician who specializes in Autism/Asperger’s. She was booking 12 months out so when they offered to let me see her NP two weeks ago, I jumped at the opportunity. Prior to our first evaluation, I sent a long letter detailing my instincts on the matter (again…aren’t you surprised I did that?), sent all Ty’s medical records, and included two different Asperger’s evaluations that Jim and I had done on our own. We met with the NP for about an hour and a half and when we left she said “I am an NP and can’t make a formal diagnosis but I will slip you in to the Dr.s calendar and I can tell you right now that you can expect to leave with an Asperger’s diagnosis”. I could tell she considered all the evidence and thought it was a slam dunk case.
Today (May 30th, 2012), Jim and I met with the Developmental Pediatrician. We brought in more evaluations that the NP had given us. We also went through the DSM IV (which is the official diagnostic standard). In order to be diagnosed with Asperger’s you need to have at least two of the first category and at least one of the second category. Ty qualified in 3 out of 4 categories in category 1 and 3 out of 4 categories in category 2. When we left ‘the Dr. said, “By the way, I had the Asperger’s pack all ready for you before you even got here.” (She had read all the NPs notes and concurred). She also sent us home with a packet on ADHD Type 1 (Combined). He already had that diagnosis but she wanted to make sure we knew that Ty’s ADHD is not part of his Asperger’s but a co-morbid condition alongside his Asperger’s. (Interesting piece of the puzzle because not all Aspie’s have ADHD but they often do).
So there you have it…
I don’t have the energy to post a bunch of information on Asperger’s tonight but as you can imagine, I will include information regularly in my postings. Just as an overview though…
Asperger’s is an Autism Spectrum Disorder. It is differentiated from Classical Autism due to two factors (depending what you read you’ll see one or the other – experts can’t make up their minds). One factor referenced is that individuals diagnosed with Asperger’s have normal to above average intelligence and individuals diagnosed with Autism have below average intelligence. While I read that description today, I don’t think I quite agree with that one because I have met some people with Autism that I believe to have at least normal intelligence. The other factor (and this is the one that the Dr. used to differentiate Asperger’s from Autism) is that individuals who are diagnosed with Asperger’s did not ever have a language delay and those diagnosed with Autism did and do have language delays. Aspies may be socially inappropriate but they do communicate. It is believed that Albert Einstein had Asperger’s.
Is it High Functioning Autism? Depends on who you ask. Even in the package that the hospital gave me, some articles interchanged the labels to mean the same things and some differentiated them by saying that High Functioning Autism is not Asperger’s but Autism in individuals with normal intelligence. Apparently, in the past AS and HFA were interchangeable terms and now they aren’t (or they aren’t in all circles).
Additionally, when the DSM V comes out, word is that the fifth revision (if formally approved) will move Asperger’s under the category of Autism officially and anyone with an Asperger’s diagnosis will now have an Autism diagnosis. This because many experts believe it to be hair splitting to differentiate the two when the predominant symptoms of Asperger’s are Autism symptoms with the primary difference of language skills. The down side is that some Asperger’s affected individuals don’t want to be labeled with Autism. The up side is that it might help with services if individuals with Asperger’s get an Autism diagnosis. (Basically Asperger’s will have a subclass where in the DSM IV world it technically stands on its own as an Autism Spectrum Disorder and not “Autism”. Asperger’s generally affects boys more than girls and is more rare than Autism with 2 in 10,000 children having Asperger’s.
And what causes Asperger’s? Well no one really knows but reading material suggests changes to the frontal lobe that occur during embryonic stages. In Ty’s case though, I don’t even wonder about this. He sustained brain damage via intraventricular hemorrhages when he was born prematurely at 25 weeks and Autism as a result was one of the first predictions his Neonatologist made as a distinct possibility due to his severe bleeds. I am (oddly) grateful that at least we know “why”.
I need to climb into bed now but I am sure this will be a lengthy conversation that continues through years of my blog threads so for tonight I’ll leave you with a couple of Ty funnies.
Today while waiting in the Doctor’s office I say to Jim, “Wow! Ty is on the HD side of AD today!”
Ty then says, “What is HD?”
“It is Attention Deficit Hyperactivity Disorder”.
While I am saying this to him, he loudly interrupts me with “HIGH DEFINITION!”
LOL. Only Ty….
A few minutes later he was asking me when OT started in the morning. Because we have been studying digital clocks in math, I said “It is 10:00 but is it A.M or P.M?”.
Ty says, “A.M.! That stands for Awesome Morning!”
Don’t you love him?