Beowulf--It's Not Autism
Beowulf's Developmental and Behavioral testing wrapped up a couple of weeks ago, and on Monday Sir Walter Scott and I braved the ice/snow/slush to listen to the psychiatrist tell us her conclusions.
It was not what I thought.
At all.
I believed that she was going to do a huge battery of tests and give me an overall assessment of all kinds of aspects of Beowulf's development.
Nope.
She tested his IQ and screened him for Autism.
That's it.
He does not have Autism.
Though he does have lots of Autistic behaviors (sensory sensitivities, repetitive body movements, immature social skills, and some speech difficulties/quirks).
I was quite intrigued to find out that based on the description she gave us of the tests she gave him, the testing for Autism is entirely social. She tested him for being able to carry on a conversation, share, play imaginative games, how he used tone of his voice, and his ability to respond to body language.
Autism is diagnosed when a child scores a 9 or higher.
Beowulf scored a 2.
Not Autism.
The IQ test shed more light.
He has a normal IQ (just barely--but it IS normal).
He tested at the very high end of normal for his verbal skills.
I was quite confused because his verbal skills do not seem normal to me, but apparently what is the "verbal" part of an IQ test for little ones is what I usually think of as critical thinking/problem solving, and he's quite good at that.
Most of what he had to do was point at pictures.
And that's called the "Verbal IQ."
Then there were the tests for executive function.
He has very little.
High Verbal IQ + Very Low Executive Function = Just Barely Normal IQ
It all seems quite odd to me.
However, the low executive function score makes him eligible for an ADHD (she did not say ADD) diagnosis someday.
He missed the cutoff for an immediate diagnosis by 5 weeks or so, as this doctor refuses to give ADHD diagnoses to children under the age of 6 (she said so herself).
She says it isn't clear whether his executive function deficiencies are due to trauma (entirely possible) or true ADHD.
And since talking to the psychiatrist, I've been doing some investigating of my own, and I'm not sure if ADHD will be the right diagnosis; it could end up being EFD (Executive Function Disorder) with Learning Disabilities.
Because normal IQ or not, Beowulf struggles to learn and retain information.
His spastic body movements, violent tantrums, and inappropriate emotional responses are part of the poor executive function--he can't organize his body, his thoughts, or his emotions. Getting his poor organization into order could help him learn and retain, but no one will know until we get to the point where he's organized.
And medication will depend on when we get worn out with Behavior Modification Therapy.
I say "when" because I'm already pretty worn, and while I know the incredible dangers associated with incorrectly medicating a kid, I've also seen worlds open for a kid who is correctly medicated, and I'm not averse to trying.
At first the whole meeting was somewhat troubling to me because I felt let down by how limited these tests were.
But over the course of the week I've been thinking, and I'm realizing that I was foolish to expect a few hours of testing to cover a multitude of possibilities.
This was only chapter 2 (chapter 1 being our discovery that gluten clouds his brain function) of many, many chapters to come as we figure out how to support and teach and guide Beowulf through his childhood.
The best part of the meeting was when the psychiatrist said, "You're doing amazing work with him. Most kids with this kind of executive function score are bouncing off the walls, and sometimes I can't even test them. [Beowulf] was able to sit in a chair and follow directions, and even though he needed stickers and lots of reminders, he gave me his best effort, and he worked really, really hard."
A tiny light flickered in my brain, "I've taught him that!"
I do not take full credit for Beowulf's success. I give God the credit for magnifying my paltry efforts and turning my mistakes into Beowulf's successes.
I mentioned to the psychiatrist how sometimes I think of registering him for traditional school, and I asked about IEP information. Turns out a normal IQ and no diagnosis makes him ineligible for any services but those I can offer at home. She did say, though, that because we have baseline measures, it would be easy to spot developing problems, request/demand retesting, and get him bumped to an ADHD diagnosis to qualify him for 504 accommodations.
I get the feeling that "easy" is a relative term.
One interesting thing about her recommendations regarding traditional school was the shadow that flickered behind her eyes when I mentioned that idea. And I know I wasn't imagining it because Sir Walter Scott saw it, too. The psychiatrist was mostly cool and professional, but she clearly liked what was happening in our home school for Beowulf, and she was equally clearly doubtful--not in words, though--that a classroom setting would be good for him.
That makes me feel a little bit good about our home school.
The next few steps for Beowulf are:
1. Continue providing a highly structured environment.
2. Continue and develop Behavior Modification Therapy in the home.
3. Continue working on developing his social skills.
4. Follow his academic progress--if it continues to lag (and it is already falling behind that of his 3 yo siblings), then turn that ADHD "maybe" into an official diagnosis and start some medication.
5. Watch how medication affects him. If there's no improvement in his academic progress, get him tested for Learning Disabilities.
That's about 2 years of work ahead, so I guess that assessment was pretty valuable after all!
It was not what I thought.
At all.
I believed that she was going to do a huge battery of tests and give me an overall assessment of all kinds of aspects of Beowulf's development.
Nope.
She tested his IQ and screened him for Autism.
That's it.
He does not have Autism.
Though he does have lots of Autistic behaviors (sensory sensitivities, repetitive body movements, immature social skills, and some speech difficulties/quirks).
I was quite intrigued to find out that based on the description she gave us of the tests she gave him, the testing for Autism is entirely social. She tested him for being able to carry on a conversation, share, play imaginative games, how he used tone of his voice, and his ability to respond to body language.
Autism is diagnosed when a child scores a 9 or higher.
Beowulf scored a 2.
Not Autism.
The IQ test shed more light.
He has a normal IQ (just barely--but it IS normal).
He tested at the very high end of normal for his verbal skills.
I was quite confused because his verbal skills do not seem normal to me, but apparently what is the "verbal" part of an IQ test for little ones is what I usually think of as critical thinking/problem solving, and he's quite good at that.
Most of what he had to do was point at pictures.
And that's called the "Verbal IQ."
Then there were the tests for executive function.
He has very little.
High Verbal IQ + Very Low Executive Function = Just Barely Normal IQ
It all seems quite odd to me.
However, the low executive function score makes him eligible for an ADHD (she did not say ADD) diagnosis someday.
He missed the cutoff for an immediate diagnosis by 5 weeks or so, as this doctor refuses to give ADHD diagnoses to children under the age of 6 (she said so herself).
She says it isn't clear whether his executive function deficiencies are due to trauma (entirely possible) or true ADHD.
And since talking to the psychiatrist, I've been doing some investigating of my own, and I'm not sure if ADHD will be the right diagnosis; it could end up being EFD (Executive Function Disorder) with Learning Disabilities.
Because normal IQ or not, Beowulf struggles to learn and retain information.
His spastic body movements, violent tantrums, and inappropriate emotional responses are part of the poor executive function--he can't organize his body, his thoughts, or his emotions. Getting his poor organization into order could help him learn and retain, but no one will know until we get to the point where he's organized.
And medication will depend on when we get worn out with Behavior Modification Therapy.
I say "when" because I'm already pretty worn, and while I know the incredible dangers associated with incorrectly medicating a kid, I've also seen worlds open for a kid who is correctly medicated, and I'm not averse to trying.
At first the whole meeting was somewhat troubling to me because I felt let down by how limited these tests were.
But over the course of the week I've been thinking, and I'm realizing that I was foolish to expect a few hours of testing to cover a multitude of possibilities.
This was only chapter 2 (chapter 1 being our discovery that gluten clouds his brain function) of many, many chapters to come as we figure out how to support and teach and guide Beowulf through his childhood.
The best part of the meeting was when the psychiatrist said, "You're doing amazing work with him. Most kids with this kind of executive function score are bouncing off the walls, and sometimes I can't even test them. [Beowulf] was able to sit in a chair and follow directions, and even though he needed stickers and lots of reminders, he gave me his best effort, and he worked really, really hard."
A tiny light flickered in my brain, "I've taught him that!"
I do not take full credit for Beowulf's success. I give God the credit for magnifying my paltry efforts and turning my mistakes into Beowulf's successes.
I mentioned to the psychiatrist how sometimes I think of registering him for traditional school, and I asked about IEP information. Turns out a normal IQ and no diagnosis makes him ineligible for any services but those I can offer at home. She did say, though, that because we have baseline measures, it would be easy to spot developing problems, request/demand retesting, and get him bumped to an ADHD diagnosis to qualify him for 504 accommodations.
I get the feeling that "easy" is a relative term.
One interesting thing about her recommendations regarding traditional school was the shadow that flickered behind her eyes when I mentioned that idea. And I know I wasn't imagining it because Sir Walter Scott saw it, too. The psychiatrist was mostly cool and professional, but she clearly liked what was happening in our home school for Beowulf, and she was equally clearly doubtful--not in words, though--that a classroom setting would be good for him.
That makes me feel a little bit good about our home school.
The next few steps for Beowulf are:
1. Continue providing a highly structured environment.
2. Continue and develop Behavior Modification Therapy in the home.
3. Continue working on developing his social skills.
4. Follow his academic progress--if it continues to lag (and it is already falling behind that of his 3 yo siblings), then turn that ADHD "maybe" into an official diagnosis and start some medication.
5. Watch how medication affects him. If there's no improvement in his academic progress, get him tested for Learning Disabilities.
That's about 2 years of work ahead, so I guess that assessment was pretty valuable after all!
I don't know if there is a chance of Fetal Alcohol for him, but what you describes sounds like that to me. The vastly different scores in the different sections of IQ sounds very familiar and is very common in FAS kids. A book that has been very helpful to us is "Smart but Scattered" they also have a teen version. It is wonderful.
ReplyDeleteBlessings, Dawn
FASD is my absolute opinion, but if I bring it up, I get closed doors. No one within our experience who has the power to diagnose it will do so without admission of alcohol use from birth mom. That leaves us with symptomatic treatment as our only option. If on this journey I can find a doc who dares to diagnose based on family history and presentation of symptoms, I will shout for joy.
DeleteA few resources for you that will relate to executive function. Understood.org has a wide variety of information. I'll second Smart but Scattered, that is great. Also look for information on NVLD or NLD. Both are abbreviations for Nonverbal Learning Disorder. It isn't about verbal skills, it's executive function issues. (the Understood website has some info on it).
ReplyDeleteWe have all of this information on our radar and I'm partway through Smart but Scattered again because of Mason. The majority of kids with Spina bifida, hydrocephalus, and chiari brain malformation (all things Mason was born with) have executive function issues, ADHD, and NVLD. A neuropsych evaluation is standard for kids in his situation. We've not done one yet, but it's one thing we'll be discussing with doctors at myelo clinic next month.
Yes, NVLD was considered a possibility when he was 3, but the docs won't diagnose for that (at least the ones in our system won't) until age 6 or 7. I hope for that to be assessed when we take him in for further testing someday. Honestly, if his regular pediatrician hadn't recommended Dev/Behav testing, I'd have waited longer, but with her referral in the system, I didn't dare miss my chance. It's so hard to get in to these clinics! With the usual waiting list, I thought he'd be 6 before we got in, but there is another hand at work here. :)
DeleteMy stepdaughter Krystal was tested for a slew of psychiatric conditions, but was always so many/just enough symptoms short of actual obtaining a diagnosis. She does have sensory processing- which, I was told is not a condition in and of itself, but a symptom. A symptom of what, though? My husband and I just gave up trying to find a diagnosis. I do take her to a sensory specialist, but we are down to appointments every 90 days now. She has definitely experienced trauma in early life and “maybe”? Some intrauterine exposure to- something? I have found that extremely generous boundaries have helped tremendously. But boundaries that are as generous and wide-spread as we set are a lot easier with 3 kids in the home than with 12.
ReplyDeleteMaybe by the time they revise the DSM to volume 6, or 8, or 11, or version 86, there will be a word to describe Krystal. For now, she’s just who she is.
As far as his spasm movements, may I ask if they are voluntary or involuntary? I have had Tourette’s since age 7, but I was not properly diagnosed until age 31. Tics when one has Tourette’s are often described as “involuntary”, but that’s not an accurate term. They’re preceded by a premonitory urge that can only be satisfied by voluntarily carrying out the action, or the tic. The “involuntary cursing” is a symptom of only 10% of sufferers- it just gets the most attention. Being the other 90% that doesn’t have this symptom, it’s one reason why I can’t stand the Tourette’s support groups. I don’t like the “cursing”, not because the foul language is offensive (although that’s part of it), but because they seem to be the ones who are the squeaky wheels that get the oil. They’re also the reason why this condition has been made into a laughing stock.
I would sit down with your son and ask him- do you get a feeling before these movements that make you feel like you HAVE to do them? Or do they “just happen” like a twitch just happens? It’s really hard for a child to know their bodies enough to tell a difference. My own parents put their heads in the sand regarding my “problem without a name” as I called it before I was 31. I knew myself enough by the time I was about 11 or 12 to make reversing or masking motions. I don’t know how old he is, but it’s hard for young ones to distinguish.
Best of luck.
There is a separate Tourette's clinic in our system. I've worked with kids with Tourette's, but Beowulf doesn't seem to share symptoms with them. We'll see, though! I've been wrong before!!!
Delete3 steps forward, 2 steps back, in the dance toward a diagnosis. Have you pushed for genetic testing? I found it really helpful to have a specific syndrome/condition to point to. There are facebook groups for even the rarest of diagnoses, and it gave me a better idea what sort of prognosis we'd be looking at than the geneticist did.
ReplyDelete