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