Asperger’s Syndrome


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?

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10 responses to “Asperger’s Syndrome”

  1. I do love Ty! I am glad you finally got a dx, even if it is hard putting labels on our kids. The Twins saw the same doctor 4 years ago when they had to get their second dx at age 6 to continue services. I like how you talked about social therapy/speech therapy. That is basically what the boys get at speech each week. I have so many people question me when I say they have speech therapy because they talk so well so I oftentimes have to explain that it is more to learn what to say and do in social situations. I have wondered with the Twins and aspergers but the doctors have never said it was that. As you know, the Twins have above average intelligence and Dr. Blitz was so curious as to how high their IQ might be, but we have never done the IQ tests she wanted us to do.
    Loved the HD quote, sounds like something one of my twins would say as well. I really do love these boys of ours.

  2. I’m so happy to hear that you’re going to be able to get Ty speech therapy to help him (and you!). I can imagine it’s bitter-sweet, but it’s a good reminder of how blessed we are to live in a country with resources and support available. Ty’s blessed to have parents like you guys to advocate for him. I’m looking forward to reading about his progress.

  3. The Lord has choosen the most wonderful, loving parents for Ty. He is such a special and blessed boy. I know it’s not easy to hear the words but as Laura has said you live in a country with so many resourses and support. You will meet many wonderful people who can help you when you need it. You are such a strong woman & have the biggest heart and such an amazing family who will be there for you through it all. Awesome Morning…..Awesome boy! He is so darn cute, inside and out. I love reading about all about Ty’s world 🙂 God Bless you Doni and your amazing family. <3

  4. We love him more than words can say! Our special Ty sleepover was so special and I devoted the whole day to Ty – his games (that we went to Red Box twice for!!) and special treats and having him crawl in bed between his Uncle Dave and I…precious, precious! Man we are so thankful and love every single child in our family. We laugh at their antics, their pranks, and their dialog between each other. And we cherish just watching them play and love on one another. When you see the special times where one of the cousins go up to Ty and take his hand or ask him to play makes our hearts burst with pride. Is it always so rosie and perfect? No! It is heartbreaking to watch him at times be left out or even intentionally slighted…are the other cousins bad? No! They too are having to learn Ty’s love language. It is a growing experience for all, but I for one am so blessed and honored that the Lord chose Doni and Jim for Ty. That we are blessed to have him in our family – that we will continue to watch the highs and the lows of our boy, but we will always have his back, love him, rescue him, lounge in his happiness and laugh at his jokes. I’m so proud of you my niece and I believe you to be blessed by the gift of each of your “chosen” children. I can’t help but be excited by the future for him! Why would I say such a thing? Because I sat in a doctors office with a woman who I got talking to whose son just turned 25 and has Asperger’s Syndrome and C.F. and is in college and like Ty has the “happy” side of the syndrome. It makes me excited to see who Ty will become and I have a feeling he will continue to surprise us and fight his way through life with his happy, happy heart and leave us all feeling proud of being related to Ty Jordon Brinkman! All our love to you and prayers for the peace and encouragement you will need along the way! Thank you for “teaching” us about him and watching you pour your heart and life and energy into being the best Asberger’s Momma their is! Why? Because you’re a researcher, always a student, learning the best way to train and grow up these precious gifts. What a wonderful life when we can cling to the Hand of the One Who loves us most of all!!! Blessings to you sweetheart! <3

  5. Glad yall finally got the diagnosis. I told a Dr when N8 was three that i thought he had it.. he got his diagnosis in Feb this year.. it hasnt changed anything except they want him in social therapy to learn how to deal with other kids better.
    I love reading Ty updates because they remind me of Nate. <3

  6. high definition… awesome morning… oh that boy. i so wish i could tell my brain to be as happy as ty’s… it might be touched by aspergers… but is it ever happy and beautiful and oh so smart!

  7. I do love Ty! I know the path is emotional, and I hope the diagnosis helps open some doors for you guys as Ty grows. He is a wonderful, wonderful little boy and he has an awful lot of people who love him and who are in his corner. I an intrigued by the social therapy side of speech therapy. It’s a great concept. We are all here for Ty and for you as you guys keep on in the journey. Love to you all!

  8. Oh and yes, I do the “lumper” and “splitter” thing in my head all the time, too. The funny thing is, of course, that that classifying into lumper vs. splitter is itself an act of lumping. So I think it speaks volumes and my husband the splitter chafes at the characterization – which basically proves my point. Ha!

  9. Liza – hee! hee! at your husband comment! You and Doni crack me up! I’m a fan 😉

  10. I’m glad you got the diagnosis. It will def give Ty access to more services. It does make things easier when explaining to the general public because people are beginning to be more knowledgeable about autism however do you ever feel like you don’t fit in with specific groups of special needs moms. I’m always looking for support but I feel like I never belong – some of Noah’s issues don’t relate to his CP so I feel like I don’t really fit in with the CP moms and then vice versus with autism Moms.

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