Terry Speaks
Thanks The Hub for your insightful comments. It is nice for you to contribute to our understanding and I hope that you leave comments often. I know how hard you are working to make this work for us and to be a good father and I appreciate it so much.
I read in one article (no reference now but will try to find it-I might have already referenced it, let me know if I did and you read the link) that aspies are better at writing down their feelings than speaking them. It encourages aspie to keep a journal that they can refer back on to study themselves and their emotions. Even as his wife of 11 years, I don’t always know what is going on inside. I used to joke that I would go to read his blog to learn about what’s going on with him because he wrote there daily and I’d be lucky if we had even a conversation, and when we did, of course I was the one who started it. It really made me feel like a bad wife and friend. And even when the big D crossed my mind I would always think that no one would understand why I’m not happy, because no one knows how it is behind closed doors (except maybe for his mom since she raised him). They see the happy go lucky, witty and charming, smiley The Hub. Not that that The Hub doesn’t exist, I just didn’t see that The Hub very often at home – even though I knew that that was the The Hub he really wanted to be. I am truly happy for The Hub (and me) that we are learning how to handle the communication gap. It has been liberating for both of us. We still have good days and bad days, but the good days lately have grossly outweighed the bad ones.
Could it be something other than Aspergers?
I started doing more research and stumbled across an interesting webpage when I googled “Hyperlexia vs Aspergers” and found this link: http://pediatricneurology.com/autism.htm
Now it doesn’t give much insight on the difference between the two, but it did go further in describing expanded ASD which are not included in the DSM-IV, which basically means they are “unofficially” considered on the spectrum. According to the summary chart, The Elder looks like a blaring NVLD candidate, but when I click on the resource link provided on this webpage, I got about halfway through and realized, nope, this isn’t him. He does have a follow-up appointment in 6 months with the neurologist when they are going to do an EEG, we should be able to rule this out. He hasn’t had any trauma to his head so though he is delayed in his motor skills, it is not to the extreme of what I was reading.
Here is another good resource that explains the Spectrum: http://www.freewebs.com/calnaa/autismspectrumexplained.htm
The other possible diagnosis is Semantic-Pragmatics Disorder (SPD). Here are articles solely on SPD that describes The Elder and The Hub very well: http://www.hyperlexia.org/sp1.html and http://members.tripod.com/Caroline_Bowen/spld.htm . I intend to ask his doctor why Aspergers with SPD versus SPD as a stand alone. My intellectual deduction are the quirks (finger twisting, awkward gait, the “da da da di di” type sounds he makes for no apparent reason), and according to this article, http://www.mugsy.org/spd4.htm, it appears that another difference is the superior intelligence. SPD does not mean necessarily that the patient has above average intelligence.
Here is a great graph (you know me, miss visual…) from the Bishop article at http://www.mugsy.org/articles.htm. The author also suggests that because The Elder has obsessive and ritualistic behaviors that he should retain the diagnosis. I know from talking to a teacher/speech pathologist friend of mine, an Asperger’s diagnosis is a good “label” because he will get what he needs for early intervention through the school system because it is more widely recognized. I still want to ask his doctor what is the significant difference though.
Update on Eric
Here is the original email blast that I sent with some names altered so I can’t be accused of slander.
Interesting enough I looked up OCPD and it doesn’t describe The Elder or The Hub, but fits me almost to a T! Ha ha!
———- Forwarded message ———-
From: Jennifer P Higgins;
Date: Jun 29, 2007 9:00 PM
Subject: Update on The Elder
To: The Hub Higgins;
Hey! I know that each of you have gotten bits and pieces of the “saga” we’ve gone through this past year, and I’m happy to say that we finally are at a point where we can move forward!
Background on psychologists: Dr A is the most well respected child psych in East Tenn, so much that he is very difficult to get in to see (and his office is over an hour’s drive away). When we found out that The Elder may have an Autistic Spectrum Disorder in January, we call his office to get on the waiting list in February (we waited because we were in denial that The Elder’s quirkiness could be anything less than 3 year old quirkies). At that time they gave us a time frame (not an appointment) of “June-ish” – that they would call us then when his schedule opened up. Geez! So we waited and waited and waited and then The Elder’s therapist suggested another psych Dr. L who used to work with the KCS for like 11 or 12 years and had access to the ADOS testing which is the “official” test for Autistic Spectrum Disorder. We got into her office almost immediately. She saw The Elder for a total of 3 hours of testing and finally came to the conclusion of nothing really. The GADS testing scales are specifically for Aspergers testing. On that he scored “High/Probable” and “Borderline.” But she confidently ruled out Aspergers because the ADOS said so (no real explanation), she ruled out ADD, ADHD, and ODD (oppositional Defiant disorder). She did say that based on his intelligence testing, his Verbal and Non Verbal reasoning was above and well above average and his Spatial reasoning was on the low end of average which would contribute to frustration and therefore behavioral issues. We were probably looking at a personality disorder like OCPD, but that cannot be diagnosed until he was an adult. She referred The Hub and me to other psychs for parenting help and marriage counseling.
Meanwhile, Dr A’s office called us and we decided to go ahead and go see him as a second opinion since we finally got “in” and he was so reputable. After that appointment, we really liked him as a doctor, he made us feel validated in our concerns and he didn’t make me feel like I was an inadequate parent. As for The Elder, he immediately didn’t suspect Aspergers based on observation of interactions and did all the testing that Dr L did except for the GADS and ADOS. He didn’t have any background information from Dr L or the therapist when evaluating him so completely unbiased of previous evaluations. Today we went for the follow up (after all the test scores were compiled) and he was positive and optimistic about The Elder. He went into a little more detail about his IQ, in nonverbal he scored 98th percentile (7 years and 4 months age equivalent) and IQ of 130 (127 is the cut off for giftedness). However one category (which I can’t remember the name of it) he scored in the 68th percentile but what Dr A showed us was that is a composite score of basically his listening skills and his speaking skills which had a very wide margin, so the composite score was misleading. Basically his listening skills were low and speaking skill were high. In other words he could clearly tell us about an event (if it originated in his own mind to tell us) but if we asked him to tell us about an event, he couldn’t process that to be able to tell us. Dr. A pointed out that that was an unusual pattern that usually people have stronger listening and comprehension than speaking (for example when we learn a foreign language, we tend to understand it better than we can speak it at first). So in combination of that, some sensory observations he made in his first evaluation, his high intelligence, some quirkiness he observed (hand flapping, for example), and The Elder’s intense focus on Letters, Numbers, and Trains, he concluded that he does indeed have Aspergers. Fortunately The Elder’s social dysfunction is very mild and he believes that with occupational and speech therapy that by kindergarten The Elder will be totally integrated (for most it takes until 2nd-3rd grade). By that time, the only thing that Dr A predicts will be obviously aspergers will be his IQ.
So we are pleased to have a solution and a next step. I’m personally pleased that I don’t have to feel like the bad parent who let’s her children run wild. We know things could be worse so overall this is a good thing and I feel like we can close this chapter and move on with therapy and feel positive about our son instead of frustrated knowing that SOMETHING is going on but not know what it is nor how to handle it. We have already seen improvement since he began therapy in January and again in the last month (i think as he is “maturing” as next weekend he will be 4 – sniff). Gratefully The Elder doesn’t have a clue, he thinks therapy is “school” and with his speech improvements he did wonderfully in VBS and getting along in the classrooms! Who knows – he may fully integrate this year instead! =o)
Thanks for prayers!
Jen & The Hub
For more information on Aspergers, Dr. A recommended the book by Tony Attwood.
