A Funny Little Thing Called Tourette's
This is our son Kaden. He is child number three, boy number two, and the first in our family that we know of that has Tourette's. It came as a complete surprise to us. It was not something we ever considered to be behind some of what we had perceived to be behavioral issues regarding our son. Up until last summer, we thought he was on the autism spectrum like his older and younger brothers. He was receiving intervention in the school system for autism and was even covered by our insurance for ABA therapy when he was at home. That is until we went to get a medical diagnosis.
How were we receiving services without a medical diagnosis? He was seen by a school psychologist and with a team of specialists at his school they agreed he met the criteria for autism under the DSM-IV (the recognized manual for mental disorders). Insurance felt that the school evaluation was sufficient to authorize services. It was pretty nice really. When you have autism you can be covered for so many more services than with Tourette's. Had I known this, I would certainly have reconsidered going for a medical diagnosis. I did it to make certain the insurance would continue to cover him. Like I said, I had no idea we would come away with a completely different diagnosis. Vision is always 20/20 in hindsight.
I was also concerned about the frequency of his tics. He had frequent vocal tics, and was given the affectionate nickname "Squeaker" as he could squeak as many as 20 times a minute on his worse days. His older brother (with a medical diagnosis of autism) has frequent vocalizations from his stimming as well as arm flapping and so I always attributed Kaden's tics to some sort of stimming. When I asked Kaden why he made the squeaking noises he said it was because it felt good. It was enjoyable for him and I therefore figured it was something sensory. He sometimes had funny motor tics too like pulling on his earlobes before rubbing his nose. These actions still seemed different from the things his autistic brothers would do.
Kaden had other differences too. He developed speech more naturally than his brothers and he had only a mild speech delay by preschool. He was able to talk with his peers, but it was shallow, he did not have the back and forth conversations his peers did. He was socially awkward and often would play by himself though he seemed interested in what the other children were doing. He had no idea how to engage with them. He was rigid in his routine and liked to have everything a certain way (like his brothers) but had a wider range of interests than his brothers. He had a terrible time with transitions, almost worse than the two brothers with autism. It was often the most difficult to get Kaden on the bus in the morning if he was not ready. He couldn't seem to concentrate on what he was doing. I would have to redirect him 4 or 5 times just while he was getting his shoes on. If you told him to hurry up, he would go slower every time. EVERY time.
He was the last of the three boys that we sought intervention for. His two brothers had marked speech delays and were easily identifiable as on the spectrum. Kaden was the kid that we would look at and ask, "So is he on the spectrum or not?" He was in that in-between land that no one seemed to know what to do with. The psychologist in the schools was reluctant to even review his case. He said it was likely Kaden had symptoms of being on the spectrum because he was around the behaviors of his brothers so frequently. The schools had to comply with my request, however, so he was evaluated the fall of his first year in preschool.
When I went to the case conference to review the findings, the psychologist seemed almost surprised that his findings were significant. Everyone felt he would benefit from additional services. He fit the criterion of DSM-IV, although mildly, and that was enough to get him into speech and allow him to have a personal aide in the classroom when he entered kindergarten. That was all I really wanted. To make sure that he would get the help he needed to be successful in school. He was a smart boy, but would get easily lost in a group of other children.
That was our background when we went to our appointment at Riley Children's Hospital in Indianapolis. The Christian Sarkine Autism Treatment Center there is considered THE place to go if you want to diagnose a child with autism. It was also in network with our Children's Special Healthcare insurance. It is difficult to find another place to go if you want the testing to be covered by insurance or if you don't have $1500 to spend on a test.
When we arrived at our appointment I expected them to actually do an evaluation on Kaden, but rather than engage Kaden all of the questioning was directed at me. After an hour long interview the doctor did talk to Kaden for a few minutes. Afterwards she turned to me and said something I'll never forget. "A child with autism would never talk as naturally as that." She also said that studies were now showing that siblings of children on the spectrum may exhibit similar behaviors from being exposed to them (i.e. they learn the behaviors). Remember, at the time, I was sure Kaden had autism. When she made this statement I felt that everything I had tried to present had been belittled. She was only seeing Kaden on a good day, not a day when you could hear him crying on the other end of a large building over something minor. A child doesn't learn to be forgetful, rigid in routine, or narrowly interested in a few things. Then she explained that he had Tourette's Syndrom and refused to acknowledge his other troubles. They were learned of course. I was nearly in tears when I left the appointment.
Why was I really upset? It was because I had been told before that what I was seeing in my children was imagined. When you have one child with autism, you start seeing everything as autism. Only in my case I really was seeing autism over again. When I started seeing the signs in my younger son Asa, I was not taken seriously at first. When he failed to start talking on his own, my observations were given much more credibility. You develop a familiarity with the behaviors even though you cannot adequately describe them. I knew that Kaden was a little different from his brothers, but I also knew that something was there!
In hindsight, again everything is always better in hindsight, I think the appointment would have gone better if the examiner would have affirmed my experiences and the observations I had made in my son. I am with him more than anything else. It would also have been extremely helpful if she would have said that Tourette's is often accompanied by a myriad of behavioral symptoms. It wasn't until I did my own research at home and read blogs by other mothers of children with Tourette's that the diagnosis started to feel like a fit.
One of the most helpful to me so far is a site by the National Tourette Syndrome Association. One article in particular that caught my eye was "Understanding Behavioral Symptoms in Tourette Syndrome: TS is more than Tics" by Kathleen J, Giordano. What an eye opener! I felt such a sense of relief in being able to finally understand my son. She talked about dysinhibition and how children with Tourette's are unable to consistently stop themselves from "expressing behaviors, thoughts, or displaying actions that someone else might be able to control." One example that comes to mind is when Kaden won second place at the Pinewood Derby with Boy Scouts he said that the smaller trophy was "garbage" and wanted the bigger one! He didn't have the ability to repress this thought as other children might be able to do. He said exactly what he was thinking! He later expressed remorse and said the other trophy was good too. He is a good kid and has great kindness in his heart. An observer who does not understand Tourette's would initially think him a spoiled brat. Luckily the scout master found the incident more funny than anything else. Especially since Kaden ended up winning the "bigger" trophy afterall.
Other behaviors on her list in the article include oppositional behaviors, obsessive-compulsive behaviors, immature behaviors, executive dysfunction disorder, and many others. I highly recommend reading the article at www.tsa-usa.org for more information. I will also try and touch on some of these in future posts as there is a lot here to understand about Tourette Syndrome.
Since learning of his Tourette's, Kaden has lost coverage for therapy at home through our insurance. There aren't statistically proven therapies for Tourette's as there are for autism. Worse, it is hard to find a therapist willing to see him in our area. I have requested an appointment to return to Riley Children's Hospital to see a specialist trained in Tourette's, but I have not yet heard back from the hospital and it has been over a month. This is a typical response time for them. It is my hope that more evaluation and treatment options will open up for children with autism and Tourette's as they are very limited right now, despite the growing number of children needing these services. At least the schools are still offering services, nothing has changed there. I am so thankful for the schools who are often the first responders to our children with needs.
