It’s official, youngest son is ASD
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After six evaluation/testing sessions (four at the hospital, two at the school), it's now official that our youngest son has atypical autism (aka PDD-NOS). I had expected Asperger syndrome, but they said they don't use that term anymore because there's too much disagreement on what criteria to use. That's fine with me. As far as I'm concerned, either you're on the spectrum or you're not, and each person has their own particular mix of symptoms that defies categorizing -- until they can identify the specific genetic and biochemical glitches that are behind different varieties of autism. Anyhow, the diagnosis was based on the following instruments: ADI-R - scored just within the autism range. Under restricted, repetitive behaviors the psychologist made note of the following: - his strong interest in trains Vineland - an adaptive IQ of 72. I felt his score was brought down by his trouble with fine motor skills, but there's no getting beyond that he needs lots of support/follow-up with activities of daily living because of his problems with concentration and motivation. He scored best on academic skills. CARS - Scored just within the autism range. ADOS - Scored just within the spectrum range, but not within the range for infantile autism. Stanford Binet - Average IQ, but fairly big difference between verbal and nonverbal score (90 vs. 108). His best score was 117 on a timed puzzle (using shapes to reproduce a pattern, like tanagrams). Movement ABC - Motor skills are in the 4th percentile, in the normal range but not good at all! He can perform the activities, but in way that lacks maturity, mastery and fluency. Eye-hand coordination (catching a ball) was especially challenging. I'm so glad I asked for this test, because otherwise they don't test motor skills in an autism evaluation. Hearing test and tympanograph - Above average hearing, especially in the left ear. What's next? He's scheduled for a sleep-deprived EEG (joy, joy), and there's also another meeting at the hospital to go over the results together with the school. I also need to get his eyes checked, but it's really a technicality since he had above-average vision using the eye chart at a screening at school. So that's the scoop. I don't know if this was hard to receive or if it gave you peace to have a diagnosis confirmed. I hope he gets the help you feel he needs! I knew you suspected NorwayMom, and you were right. How are you feeling with the new dx? I hope he gets more support at school, and that progress is not far behind. Good Luck and hoping the EEG goes well.I am sooo glad he will now have the services he needs Many hugs I know it's been a very long road for you. Now you know and you are an AWESOME mom who will get your son what he needs. And you have the diagnosis, so he will now officially be able to get services, I assume? I'm not sure how Norway's system works regarding services. Are you grieving at all? I know you've thought he had some form of autism for a while, but still when the diagnosis is official - most people do grieve anyway. Please let us know if there is anything we can do to help. You help so many of us so much of the time - now it's our turn to return the favor! I found it interesting to see how similar and different our kids can be. For instance, my ds can't do a tanagram to save his soul - it is one of his weakest points. But like your son, my ds scores best on academics. Big hugs to you - we are all here and you finally know some answers. And, hopefully, after the EEG (wishing you MUCH strength on that!) - the tests will be done and you can get back to a more normal routine. Hang in there! I know you knew but it is always something else hearing it confirmed. Big hugs. At least your kid will now get more appropriate help. A while ago I think you posted a drawing of a train your little guy made and it was just absolutely amazing. He clearly has gifts and talents this diagnosis does not give full credit for. I echo everything said here--and really hope this helps with the services needed. I dont know how you feel--with me, it was relief because, without official dx in our school system when my kids were young, we got very few services. Once the DX was given, with specifics included in areas needing addressing, we were able to get more accomplished during IEP meetings--less guessing and more direct approaches. I don't think we ever got half of what you were given for evals--and am amazed it was so thorough! That is great. One thing that I noticed was: - his strong interest in trains That is Colin (and even Sean), exactly--from race cars to trains, they were obsessed with them--Sean was totally in love with Thomas the Tank Engine and I even got a train table for him to use, since he loved it so much. Colin loved trains and race cars--he would line them up and play with them for hours, just moving them back and forth. We had a flashlight in every Christmas stocking as well--thankfully, they are a buck here. :) I even sent them to bed with them because it helped them be calm during the sleep routine. Keep us updated on your progress and Hugs, once again.
Norwaymom, you are an excellent parent for pushing for this evaluation. While Aspergers or atypical Autism or PDD NOS (whatever your team wants to label it)is something that responds well to intervention services, and of course YOU know that, somehow that second "official" diagnosis has to hurt your heart a little bit. We all love ya, girlfriend and are sending you our hearts, our hugs, and our little prayers for acceptance. My thoughts are with you NorwayMom. I would guess you feel somewhat relieved that your suspicions are confirmed, but I also know it doesn't come without some heartache. I just wanted you to know I think you are an amazing Mom and both your boys are lucky to have you. Aw, I feel for you even though you suspected ... hopefully he will get excellent services! And he has a great mom ... but I will echo those above ain asking "How are YOU?" Hope you are handling it well -- hot cocoa and a box of tissues included! Hugs to you, Linda (((HUGS))) Hopefully having the dx in hand will help assure he gets all of the supports that he needs. Good for you for pushing for the evaluation. I was just thinking about you the other day--wondering if you had gotten the results yet. While I know you suspected, and the dx doesn't change the child, I'm sure it's still tough to digest! He couldn't be in better more capable hands though. I hope he gets all the school based services he needs! ((HUGS)) to you NorwayMom!Big Hugs to you NorwayMom. Thanks for the support, everyone. I wouldn't say I'm exactly grieving, but I experience my load as heavier than before. I'm in a rather exclusive club as mom to TWO disabled children -- this situation is not so uncommon here on this forum, but it is uncommon in society as a whole, and I feel like a freak in a way. Plus it's been a very tough fall, since my oldest son has had school refusal/avoidance since late August, and my youngest son has started with the same nonsense the last couple weeks. As many of you guessed, this diagnosis was strictly a formality. I knew he had it. I was mostly interested in getting the test scores and expert comments that could help us secure him more help at school. I was bossy enough to ask for the Movement ABC test and to tell both the regional specialists and the people at the autism study what I wanted them to emphasize in their written report and when talking to the school. Here's a recap of our path to diagnosis, organized by our youngest son's age: Age 3-1/2: My oldest was diagnosed. No one mentioned the need to keep close tabs on my youngest. We felt he was developing normally but we didn't know of any good milestone checklists like www.cdc.gov/actearly Age 4-1/4: His preschool teacher said she was concerned about his social development, that he was always withdrawing from group activities. We agreed that she should consult with the school district's special ed dept., but she didn't. I didn't discover it for 6 months. Age 5: The special ed dept. finally observed and tested him, a process that took several months. They weren't sure about referring him to the regional specialists, and we were on the fence, too. We felt that part of his problem was that the preschool had 100 kids wandering freely and a large number of adults to relate to. Age 5-1/2: He finally got a little extra help at preschool (language stimulation group). Age 5-3/4: He started elementary school, where he only had to relate to 20 classmates, 1 teacher, and 1 assistant (only 3 assistant hours a week) Age 6-1/4: No improvement in his new school environment. We were all concerned about his concentration problems and got him referred to the regional specialists. Six month waiting list. Age 6-1/2: We signed up for the ABC autism study (Norwegian project in cooperation with Columbia University). They did the ADOS, ADI-R, etc. Any doubts we had were gone. We knew he had ASD, but they couldn't give him an official diagnosis since they didn't have the opportunity to observe him in his everyday environment. Age 7: After 6 months waiting, we finally got him evaluated by the regional specialists and he was diagnosed. It's been a long road... sigh. It is always a long road. I must say though, you are so well informed and prepared, that your sons are both so lucky to have you as both their mom and their advocate. I really admire you. NorwayMom---Hugs and warm thoughts your way. Now, you can formally address what's going on with the right services and interventions. Much of that sounds like my son when he was younger. I always thought the Vineland was a little unfair myself. Not only are your sons lucky to have you, all of us here are lucky to have you here too. ((hugs)) Just Hugs!Just hugs and hope.... |
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