I am so glad to have found this board!
Hi all, This is Karyn, the author of the original post on this thread (I changed my iVillage ID when I discovered that I could google my old ID, which was an abbreviated version of my e-mail address, and get a list of all posts I'd made on iVillage!!)
I just wanted to update you all on what has gone on here since my original inquiry post in March.
I contacted Joshua's special ed case worker who informed me that she'd spoken to his teachers, his case worker from the year before, etc, and "we decided that you should not have Joshua evaluated because another diagnosis would be a lot for him to handle right now." I was pretty upset and basically replied "I hear what you have said, now please answer my questions". Joshua is starting HS this coming fall and I think the middle school just didn't want to invest in another diagnosis with only a few months left. When she finally did reply, she confirmed most of what we were seeing at home was also going on at school.
So I was still looking for someone to be a "second eye" for me, and it was provided! I found out that a boy at church Joshua's same age was diagnosed with AS at age 6. So I contacted his mother and we talked for a while and she was convinced that I needed to contact his neurologist, saying "you sound like you are describing a few years ago". So I called to make the appointment, which was a 2 month wait (she's the only pediatric neurologist in the area).
So this past Monday we had our appointment. I went armed with a wad of paper, with all of my notes and outlines, and prepared to defend my suspicion. She sat down to talk to all of us, and in 5 minutes or less, told Joshua he could leave and go play with his little brother. She had already diagnosed him with Aspergers. She continued to ask us several questions, but they all supported her conclusion. The two major things she observed right away were his complete lack of eye contact and the fact that when she asked him "if you could have 3 wishes, what would they be?" and he totally and completely could not answer her (I think it's too abstract a concept for such a literal mind).
So she has sent a note to the IEP director at the highschool, given us a referral for a group session for social skills (started with a one-on-one counselor referral, but Joshua does not do well under the pressure of 1-on-1 relationships) and recommended a book by Tony Attwood.
I contacted the special ed department at the HS to tell them to anticipate the letter from his neurologist. She said she has worked with many kids diagnosed with Asperger's and that the school has social skills courses led by the school psychologist that she will get Joshua involved in. So I am hopeful.
Joshua hs taken the diagosis just like everything else. When DH asked him later that day how he felt, he declared "I feel exactly the same as I did 10 minutes before she gave me the diagnosis". LOL -- SO him!
DH and I find that we are relieved. We feel that having a diagnosis instead of a bunch of "that's just Joshua" behaviors, we can deal with these more compassionately and appropriately, and also get Joshua the support he needs.
The boy at church that I mentioned earlier is functioning very well socially, having recieved assistance for a few years. He is social and "popular" at school. He truly provides a source of hope for us. I've also suggested that he and Joshua spend some time hanging out so that they can talk and share.
Well that's all the news for now. I truly appreciate the support and guidance I've found on this board!
KarynMom of 4: DS 15, DS 14, DS 4, DD 18 months
Like the others said, it does sound a bit ASish from here. Of course we can't dx virtually, but it is certainly worth investigating for him.
As for age, I know folks with ASD who aren't diagnosed until they were adults. Unfortunately with the more verbal end of the spectrum it is often mistaken for other issues. It is only recently that diagnostics have gotten a bit better and kids with AS are being diagnosed younger.
I forgot to reply to your question about a focal area.
From what I've seen, I'm already convinced this is a great community!
Thanks for that information.
Thank you for your response.
First of all, WELCOME! It's always great to know that people are "finding" our little corner of cyberspace. If you spend any time at all around here, you'll discover an amazing group of women (not being sexist, but hey...it is iVillage, after all! lol) who support each other, laugh together, and at times, cry together.
Regarding what I would call your "lightbulb moment", I'd say the situation certainly warrants further investigation. It is quite common for people to be Dx'd with AS later in life. Especially when the individual is dealing with other medical conditions. In fact, I read something just this morning that stated the rate of undiagnosed/misdiagnosed Asperger's is fairly high. I've pasted the information below...granted, this info. refers to misdiagnosis, which in your stepsons case isn't true, it would be more like undiagnosed due to co-morbidity.
Good Luck! Amy
From the website of Tim Kowalski, MA, CCC http://www.socialpragmatics.com/
Misdiagnosis is CommonDue to the unique nature of Asperger’s Syndrome, an appropriate diagnosis is not frequently made until a child is an adolescent. By this time, well-intentioned diagnosticians have provided many different diagnostic labels such as:
• bipolar disorder • oppositional defiant disorder (ODD) • attention deficit/hyperactivity disorder (ADHD) • gifted/learning disabled • central auditory processing deficit (CAPD) • emotionally handicapped
Church and colleagues in 2000 reported that of 32 children who were eventually determined to have Asperger’s Syndrome, 92% were initially provided with other diagnoses or educational labels. A diagnosis is highly impacted by the experience the diagnostician has with this population.
Wow. It sure sounds like Asperger's to me. Of course I'm not an expert, although being the parent of a 9 year old AS child, I wish I was!
Your son sounds very much like mine; however, it DOES bother Alex that he doesn't have any friends, maybe because other kids have pointed it out to him at school(?).
Does your son have any specific interests that he spends hours on? That was one of our first clues that it was Asperger's when Alex was younger. He can tell you anything and everything about makes and models of cars. He also loves street maps and puts Mapquest to shame. His gross and fine motor skills are way below the "norm" for his age. He, too, has an incredible vocabulary, and often is used inappropriately.
I also had to tell you I can relate to your stepparenting situation. I, too, am the stepparent to kids (not Alex) whose mother decided parenting wasn't for her, but later showed an interest in her kids. Very difficult for me to understand.