One of the first sentences Declan repeated was the phrase, “Awww, c’mon, are you kidding me?”
When he was evaluated for autism, he must have said it 15 times. He would say this sentence during every activity in the evaluation, whether it fit or not. The Developmental Pediatrician who did the evaluation asked me what it was from so I told her, it was something Dad says at home and Declan repeats. I made sure to point out to her, “It’s a six-word sentence.”
In the evaluation report by the DP diagnosing Declan with autism, it was pointed out to me that the repetition of speech was called Echolalia and a part of autism.
I’ve told this story before when I wrote about Echolalia, the repetition of speech associated with autism.
What I didn’t say was what happened next.
The Psychologist who was going over the report with me said she didn’t agree with the DP. She felt it was a good six-word sentence.
Was she just trying to appease me? Was she trying to make me feel better?
If the tables were turned, and she was the one to diagnose – would she have diagnosed Declan with autism?
Thankfully, Declan was diagnosed by a group of people who observed him through a one-way glass. The group collected observations and pooled their information. The diagnosis did not come from one person. The diagnosis was not contingent on this one “six-word sentence” factor. But the Psychologist did say she tried to talk the DP out of the repetition of speech when the group was discussing Declan’s case. I have no idea why. Looking back, it is clearly echolalia.
But, if I had decided on my own to have Declan evaluated – let’s say I flipped through the phone book and came to her name. What if I went to that Psychologist alone for help?
Where would we be now?
The Autism Assessor
“This is so hard!” A friend of mine lamented to me on the phone. “I mean, when my oldest was born with Down Syndrome there was no doubt he had Down Syndrome. He had a blood test completed, and it was concrete. But AUTISM! There is no blood test! This is so hard!”
A cry I have heard before.
In my last post I talked about the idea of moving off the spectrum.
I do not support the idea of moving people off the spectrum. Just because a person can mask their symptoms, or have found ways to cope, does not take away the core of a neurological disorder they are living with every day.
The idea made me think to look at the professionals moving people off the spectrum. And the initial autism evaluation in general.
Autism is a spectrum disorder covering a wide range of strengths and impairments. Because there are so many differences between children, some are misdiagnosed (with something like ADHD) or are told nothing is wrong.
In the article, “What Should an Evaluation for Autism Look Like?” Dr. Susan Epstein points out that to arrive at the right diagnosis, the specialist evaluating for autism will gather and interpret a lot of information about the child. What does she recommend for the person seeking out assistance for the first time? To work with a mental health professional who has experience diagnosing people on the autism spectrum. Specifically, Dr. Epstein recommends working with someone who understands the SUBTLETIES of autism.
Sometimes, I feel, there are too many variations in the interpretations.
When Declan was diagnosed he was observed by a group of professionals through a one-way glass. At one point, the professionals discussed Declan’s six-word sentence. A Psychologist saw a six-word sentence that sometimes fit the situation it was stated in. The Developmental Pediatrician? Recognized that it was a repetition of speech called echolalia associated with autism. A subtlety.
Of course, there were a lot of other factors that lead Declan’s diagnosis of autism. His diagnosis was not contingent on this one subject. But it was the DP’s awareness of the subtleties of autism that helped Declan get into services that were best suited for him and to help him towards positive change.
Ehmke, R, What Should an Evalution for Autism Look Like, Child Mind Institute, 2017
Robyn,
Wow!
I guess we are kind of lucky in that Ben’s autism is of the high school end of the spectrum. There was no doubt whatsoever. The only problem we had was listening to incorrect advice from his pediatrician. She told us we had to wait until he was three to get him evaluated. So much time lost when he could have been having help.
I’d never really thought about how hard it might be for parents to get help for their kiddos that are on the other end of the spectrum.
Sometimes I think the assessors are looking for the DSM-IV classical symptoms that only encompass kids on the high end. Now that they have made autism a spectrum disorder, some of the classiscally trained are not looking at the subtleties. I feel bad for some friends who have had their child evaluated – children that I would not be surprised were on the autism spectrum – and have them be told the kids were “fine.” I see the struggles the kids are facing, but in their session, the assessor did not. Which makes me feel sometimes, for the kids on the lower end of the spectrum, that there is too much variation in the interpretation of behaviors. Declan had a whole other host of problems – problems that led to the autism diagnosis. But when I thought about this different interpretation of behaviors – the example of the 2 different professionals looking at this one piece, a six-word sentence – in some cases something like that could be a difference maker and could be kind of scary when it is overlooked or misinterpertated.