Hello, My son was just diagnosed

iVillage Member
Registered: 03-27-2003
Hello, My son was just diagnosed
5
Thu, 07-14-2005 - 8:34pm

with Aspergers. He's 11 and I'm learning about what it's all about. I came hee a few months ago because it sounded sort of like him and now as I'm learning more I can't believe it's taken 11 years to figure it out. We've struggled for about 5 years with his low frustration tolerance, some explosive behavior, rigid thinking ect.. he was first diagnosed w/ anxiety than OCD after a complete pyschiatric eval. he's been found to have Aspergers which is the cause of his OCD (now found to not be strong enough to be diagnosed with) and other constellation of symptoms. He has alot of social awkwardness and has been the victim of bullying and just low self esteem in general. he was also diagnosed w/ depression likely to be casued by all he's dealing with. I just thought I'd introduce myself since I'll be around learning all I can. I'm also the Mom of 2 other children who thankully do not have issues, but it can all be difficult on them too.

amanda

iVillage Member
Registered: 03-25-2003
Fri, 07-15-2005 - 8:39am

Welcome to the board Amanda! This is a great board with lots of supportive ladies!! I have a ds, Jake, who just turned 12 ans has AS,depression and anxiety. He was dx at 10 after several years of seaching for the problem. He was first dx with ADHD and ODD because of his ompulsives and explosive behavior. He has come a long way in a year. I have one other child a dd that is 3.5. and hopfully she will be NT!!

Good luck and we are all here whenever you need a person to just listen!!

Liza

iVillage Member
Registered: 02-24-2004
Fri, 07-15-2005 - 11:51am

Hi Amanda,

Welcome to the board! My son, Nathan is 6 and dx'd HFA. There are lots of mom's here on the board with kids around your son's age. So I'm sure you'll find lots of info here and lots of people who can relate! Glad to have you here, and hope to hear more about you and your son!

Michelle

iVillage Member
Registered: 03-27-2003
Tue, 07-19-2005 - 11:20am

It's so ggod to here people with similiar situations who have actually seen improvment. What was it that has helped you and your son? Right now we goto weekly therapy and I feel like we are getting nowhere. Of course we've only had the diagnosis about 2 weeks, but the therapy has been over a year. Yesterday my son just lost it he gets upset over these little things and just cant seem to back off, and it just escalates when I try to get him to walk away or talk him through it. He gets so explosive and out of control. Sometimes I feel there is no hope, I can't stand feeling this way.

Amanda

iVillage Member
Registered: 10-03-2004
Tue, 07-19-2005 - 4:15pm

Dear Amanda,

Welcome to the Board. I feel so for you and your son. But at least you now know what is going on with him and that can help you figure out better ways to help him. The bullying and lack of understanding and depression of your son seem to be pretty common for undx'ed Asperger's (even for dx'ed, sadly). I read a great book called "Songs of a Gorilla Nation ; My Journey through Autism" by Dawn Prince-Hughes which you might find interesting, because she grew up completely undx'ed and described vividly what it is like to be inside and not understand or be understood.

It is great that he has been in therapy for a year, assuming you are working with a good therapist. Does the therapist have a background in working with ASD kids? Any therapy can take years to be really effective, and you are only now getting to the root and heart of the matter. My son (8, PDD-NOS) started working with a ASD psychotherapist last year and she has been very helpful, although we also moved him into a school that also specializes in ASD this past Sept. It is sometimes hard to know where exactly the improvements are coming from. He has also been in RDI therapy and social skills training since we found about the spectrum, very helpful for him.

I am thinking that as you only found out his dx a few weeks ago, it will take awhile for you all to make the switch to thinking about him as unable to currently control his actions without more help, and then you will begin to find more ways to help him. Realizing that a child is on the spectrum requires a whole different thought process in terms of behavioral management, stress reduction, etc.

There is lots to learn about, and now that you have started, I am sure you will find ways to help him out. And there are many parents here with children like yours and lots of years experience of helpful ideas, so ask away!

yours,

Sara
ilovemalcolm

iVillage Member
Registered: 12-24-2004
Tue, 07-19-2005 - 4:41pm

Welcome, Amanda. I am a psychologist w/ PHD in developmental (used to work in early intervention, but I also taught classes in Adolescence at one point in my career). My son, Cassian, is 5.5 yrs w/ a PDD-NOS dx, plus hyperlexia (early reader, obsessed with reading and scripting). Cassian has OCD traits too, but does not meet that dx yet. He also had mood issues (tantruming, low frustration tolerance). DH and I both have depression running through our families, so we started looking into medications pretty early for Cassian. We tried a lot of behavioral interventions first, of course, and I run a pretty comprehensive program at home for Cassian right now.

The meds have helped Cassian a lot in addition to our behavioral programming. We have done some trials with Lexapro, and we got some unexpected improvement in social skills and attention. Higher doses of Lexapro caused hyperactivation (bad aggressive sorts of tantrums which he had never had before), however, so even though the majority of the day looked more positive we had to drop the dose back down. I am now trying him on Zoloft, which may work better, given his tendency to become hyperactivited on the Lexapro. So far, he does seem a bit more relaxed, and the social gains remain intact. We'll up the dose next week and see what happens with this one. Our doc also wants to try Strattera at some point to help with attention issues.

I just thought I'd mention the medication angle because your son's description sounds like a kid who would benefit from antidepressants. At his age, you are less likely to get the hyperactivation effects, too, since older kids have more prefrontal lobe development and can inhibit better anyway.

Glad to have you on board, and I'm glad you got the dx finally.

Suzi