Tuesday, March 11, 2014

What brought you here?

This past month we visited a pediatric psychologist at Children’s Mercy to get a diagnosis for Tate that will be accurate under the new guidelines that are being used in the world of autism. In recent years, the American Psychological Association (APA) used a tool called the DSM-IV-TR to diagnose Autism Spectrum Disorders (ASDs). ASDs included Autism, Asperger’s Syndrome and pervasive development disorder-not otherwise specified (PDD-NOS). In May 2013 the DSM-5 was introduced as the new diagnostic tool. This manual has eliminated the three subgroups. Tate’s doctors have told us that the word Asperger’s will soon be obsolete. It is my understanding that the new diagnosis for a child with autism will be Level 1, 2, or 3, with 1 being the highest functioning and 3 being the lowest.  Tate’s new diagnosis is Autism Level 2.  For more information about the new terminology and the new criteria I found this article helpful: http://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

Some think the motive behind the new criteria is to make it harder to get an autism diagnosis, thus bringing the alarming numbers down. I do not really have an opinion on the reasoning behind the change. I do hope that the new criteria will not harm the autism community and prevent children who need support from gaining it. 

In order to get the evaluation and the new diagnosis, the psychologist had to spend several hours with Tate. He gave her a pretty accurate picture of himself from the introduction. He asked, “Do you know what brought us here?” The psychologist assumed he was asking her to reveal the purpose of our visit and she said, “What do you think brought you here?”  He answered, “a truck.”  It got better (or worse depending on how you look at it).  While testing with Tate, she needed him to define words. When asked to explain what a car is for, Tate said, "A car is something you drive around in because humans are loosing the ability to walk." She asked him about posture and he started speaking gibberish. She asked him what he was doing and he said he was speaking Spanish, also called posture. When asked what an American is, Tate said, “When you are from America, you laugh a lot and smile and play in the sunshine. You also speak English or Spanish." So, he got that right! Ha. The doctor showed Tate a lot of faces that illustrated a lot of emotions. Tate failed to identify almost all of them correctly. The doctor asked him what a smile and a frown had in common and he said, “Both faces are round.” There were many, many more gaffes and blunders over the two days of testing. Some made us laugh and some made me want to cry.
Age 3

After all the testing, Shawn and I met with the doctor alone. The results and the recommendations from the doctor were both helpful and discouraging.  Going into Tate’s appointment for his diagnosis at age 3, and again at age 12, we had our eyes wide open. We already knew both times that he had autism and we had a long, hard road ahead of us. The difference between the first time when we heard the diagnosis “PDD-NOS” and the second time when we heard “Autism Level 2”, was that we had a lot of hope at age 3 that we no longer have nine years later. Originally, we fell hook, line, and sinker, for the idea that kids can “recover” from autism. We spent the thousands of dollars it took to get best-practice, early intervention. We spent the hours and hours it took to get Tate kindergarten-ready academically. We even made progress with a lot of social skills. We worked so hard and saw a lot of growth but we didn’t get the “recovery” that we had hoped for. I am still one hundred percent for early intervention and believe Tate is much less handicapped than he would have been without the hard work. Perhaps if we had not hoped for recovery we would not have worked so hard then. Perhaps if we had not hoped for recovery the reality would not hurt so badly now. I have learned not to dwell on “what ifs.”   

Regardless of what we call Tate’s disability, it is still the same disability and he is still the same kid. Tate still struggles in all the same areas. Tate still needs the same supports he did before the new diagnosis. We continue to make progress and I see it come in leaps and bounds sometimes. 


Age 12
Over the Christmas break, Tate’s oldest sibling, Titus, was home for a visit. He is sometimes able to explain things to Tate that I have been unable to. I told Titus we were working on teaching Tate about sarcasm. I know what you are thinking… Why would a Mom want to teach her child the art of sarcasm? Why would any mother in her right mind go out of her way to try and help her kid become sarcastic? Well, in the first place it is age appropriate. In the second place it is much like figurative language and joking that is over Tate’s head, causing him to miss out on so much of the conversation around him. Thirdly, we are constantly trying to make Tate see that not EVERYTHING has a concrete, literal meaning. Sarcasm almost always means exactly the opposite of the words that are actually used. So, Titus gave it a shot. He gave Tate a definition of sarcasm and some examples. Then we asked Tate to try. Tate looked confused. I said, “Tate, look at Sydney’s hair. It is a mess. What could you say about Sydney’s hair that would be sarcastic?” Tate responded, “Sydney, your hair is sarcastic.” Lesson fail!! I’ve been hammering away at it ever since though and pointing out sarcasm whenever we use it or hear it. Sunday, we sang a really short hymn in worship and Tate leaned over and whispered, “THAT was a long song.” Then he looked at me and smiled. Now, normally would I praise one of my children for saying something sarcastic about a worship song? Would I ordinarily get excited about whispering and joking during worship? NO! I would not. BUT… I almost came out of my seat I was so ecstatic. I pulled Tate over to me and excitedly whispered, “Tate! That was sarcasm! You did it! You said something sarcastic! Good job!” I know that eventually I will probably regret these lessons in sarcasm. I know this because four of my seven children are now sarcastic, young adults who did not need my tutorials to become that way. I had a shot at mothering a child without ever having to hear those sarcastic comments that come so easily to the others, but I am a glutton for punishment because just today I said something sarcastic to Tate and then said, “Did you hear that Tate? That was sarcasm” and he smiled. 

This is another post you might enjoy about language: Who's on First?

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