Asperger's/Sensory Issues Related?
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| Mon, 06-19-2006 - 9:16pm |
I'm new here. Your advice is most appreciated. It's been a long journey to this place, and I'm not even sure it's the right one. Any help is greatly welcomed. Sorry for the lengthy post.
I have three sons, ages 5, 4 and 10 weeks, and two step-children (DSS age 12 and DSD age 8) who live with us full-time. Quite a handful! DSS was recently infomally diagnosed with AS. DSD has no AS-type issues. DS #1 & DS#2 both have quirks but I'm not sure where they fall on the spectrum. Baby seems OK so far...cross fingers :-)
DSS has a range of symptoms, many of which fit with a traditional AS diagnosis, some of which don't. He's very social but mainly with much older people. He is very forgetful, very spacy with schoolwork, barely passing most classes although he's clearly bright. He's highly disorganized. He is very socially inept and is often considered younger than 12. He flutters his hands when he walks. He hates athletic activities and appears stiff and mal-coordinated much of the time. He's obsessed with Sci-Fi and lego. He must sleep with someone else in his room and with a fan running all night. He hates laces, buttons and fasteners. He won't wear a jacket even in the dead of winter. I could go on but I'm sure you all get the picture. He's currently in an AS social skills group weekly plus sees a therapist bi-weekly for help with anxiety.
His little brothers are both exhibiting sensory issues in varying ways. My 5-yr-old must wear socks at night because his "feet feel soft". He hates getting his hair touched, brushed or - heaven forbid - cut. He doesn't seem to feel low levels of pain. He seems to muddle up the order of words in sentences to the point of incomprehension. He talks in a loud monotonous voice much of the time. He doesn't seem to grasp pretend play. I've always felt something was "off" but it's only recently bringing me to think about AS as a possibility. His teachers felt something was different about him in preschool so we got some testing two years ago through the school system with no clearcut result. It was suggested he has sensory processing issues, but this was not part of the formal testing. (Having read up on SID this seems to make a lot of sense, but doesn't feel like the whole picture). Most people assess him as quirky and "marching to the beat of his own drum" (yada yada - I have heard this about a thousand times over the course of this journey) but nothing more concrete. He was not tested specifically for AS or PDD-NOS.
My 4-yr-old has issues too, but they manifest themselves differently. He won't wear jeans or pants with a button. He lines things up and stacks things obsessively. He has to exit the car a certain way every time. He can't stand loud noises. He is mortally afraid of flushing the toilet. Again, I could go on.
They ALL seem to have a huge problem with emotion. The 12- and 5-yr-olds particularly can't handle talking about love, hate, fear, anxiety...anything with a strong emotional component. It's actually the only time the 5-yr-old ever cries (oddly enough) - when you push him to ask about an emotionally charged issue. The 12-yr-old will back off entirely, shutting down literally by putting his head down or shutting his eyes. It's like they can't even begin to process emotion. I can't find any info about this in my AS books. Sigh. It's been a long road.
Now, finally, to my questions:
All these kids seem to have different versions of sensory issues, but is it all related to AS?? Is it possible that they are all experiencing a similar disorder with different manifestations? Or are these just typical quirks which I am now viewing through AS goggles?
Is the emotional thing typical? Is this an AS symptom or possibly something else you might have heard about?
We're thinking about starting another round of testing, this time looking specifically at AS, but want to get some more personal feedback first. From what I've read it sounds like a possibility, but hearing some similar stories would sure help me feel a little more confident.
Thanks in advance,
gg

Dear gg,
Of course being just a mom of a kid who has been dx'ed PDD-NOS, of course I cannot begin to diagnose, however ... yes, everything you write about all three kids CAN be different symptoms of Autistic Spectrum Disorder. My own son doesn't have enough of the symptomology to be placed under Asperger's - such as he doesn't have as obsessions. He does have very high sensory issues, which have been greatly helped by lots of OT and learning coping skills. The sensory stuff can sometimes be separate from being on the spectrum, but very often goes hand in hand.
I would definitely be aggressive about pushing for testing for both your younger sons, you might want to do this privately with a neuropsych who specializes in dx'ing ASD. Of course, each child is so different, and it could be that the other 2 are not on the spectrum, but with what you describe, I would certainly look into this possibility more extensively! Who dx'ed your DSD? Only the school district? School districts are only qualified to do educational evals, which are nowhere near as thorough as going privately with s specialist. You get so much more useful information from going private!!!
Are you getting accomodations for your AS DSD in school, is he on an IEP for help with executive functioning, help with academics, possible sensory issues? if you now have a dx for him, there are many things that can be done to help him be more successful in school, if he is not already being helped...
Emotion, big emotion IS very difficult for kids on the spectrum. My own son is really working hard on ways to self-calm when he is very angry or deeply disapoointed, esp. suddenly. He can be completely overwhelmed and often needs quiet time, a separate space, time to process before he can later talk about things that really upset him. He cannot talk in or directly after the moment, and we have learned to respect that and work with him on his own schedule. This is not always easy for people who are not members of our family, but if they want to be close with us, we help them learn!
Anyways, do stick around and let us know how things are going. You sure have alot on your plate there! And ask away. My own son is just 9 years of age, there are moms here with teenaged AS kids and several moms of multiple ASD kids, even some mome with extensive therapetic backgrounds, very good resources!
Welcome.
Sara
ilovemalcolm
The saying that I have heard often is "if you've met 1 child with autism...you've met 1 child with autism"
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gg,
Welcome to the board.
visit my blog at www.onesickmother.com
Hmmm, I am trying to think about conversations with strong emotional content.
Mike and Cait will easily use the words "I hate...." when they are angry. Hate doesn't seem to be a problem. They aren't spontaneous with the "I love yous" which is pretty typical of ASD kids. In fact they pretty much avoid that. Mike on occasion will. He is my more sentimental guy but he is also the one that has a very hard time with any conversation that is deeper than the fact level. Cait is a little better but she is not one to discuss deep feelings either. Heck in her life time I think she has reacted with sadness and remorse when I was upset about something she had done maybe 3 times.
Neither one is particularly good at deep type conversations for a number of reasons typical to AS. I don't think it is an emotions thing per se as much as it is a communication problem. Kids with AS tend to be very concrete in thier understanding. Emotions are not concrete at all and can be very hard to understand and interpret. Also, Kids with AS have a very hard time reading other people emotions and particularly when young, may have a hard time understanding thier own. They have the full range of emotions but really may have a hard time understanding them and perhaps will display the wrong emotion to a situation (laughing when it is a sad situation, etc) and show extreme emotion in a situation.
Anyway, when you add all these things together it can make it very daunting for a kid with AS to discuss emotions. Then add on top of that, that it most certainly isnt thier area of interest and bang. All done with that conversation.
I understand your concern of looking at things with AS goggles but I would get them tested anyway. Don't make me go into my "I was so stupid and in denial" litany about my second child with AS. My youngest son had quirks too. Still does and we had him evaluated. He did recieve a provisional PDD-NOS dx but currently is doing pretty darn well. I don't think he is on the spectrum anymore but he definitely has SID and a regulatory disorder and there is concern that he may have bipolar or something similar.
Point being, get them evaluated. Better to do it now and hear things are fine than to wait and find out things are not.
Renee
gg, welcome to the board.
Your 5yo sounds just like mine!
Wow - you guys are wonderful! Based on your helpful and informative advice we are pursuing testing with the 5-yr-old through a private psychologist. I just scheduled everything for the first week in July. We also met with our 12-yr-old's group facilitator this morning and he confirmed that sensory stuff is very related to AS. So we're cautiously moving forward thinking through these goggles (sorry for the mixed metaphor).
Having re-read my initial post I realized this sounds like my kids are all very obviously and visibly affected. I should have pointed out that quite honestly nobody would think anything was amiss, except for a few very specific things (like the sock-wearing) which people usually categorize as quirky but cute. It's one of the things which has been so frustrating over the years. It's not like the kids all present as clearly having some differences. In fact, for the most part they blend in really well. But then, on occasion, the things I mentioned surface or a teacher pulls us aside and questions a behavior or two and we start to think, now wait a second.... But of course the fact that they often seem so "normal" (a dirty word but I can't think of a better one) makes me feel entirely paranoid and as if I'm trying to find something wrong (or worse, some excuse for poor school performance to cover for my own ineptitude as a parent). I'm sure you guys have been there.
I guess I just wanted to say thanks, and boy has this been a tough road. It's one thing to suspect that your child has struggles, but it all gets enhanced by other people doubting your instincts, causing you to doubt them too.
I hope that all makes sense, and thanks again. I'll be sticking around until we have some answers.
Thanks!
gg
quirky is the word I would use too.
Dave is alot like you are saying to most people particularly now that he is a little older and was in K. It was little things that just seemed "individual" but I knew was due to SID. The SID caused him some significant behavioral problems in preschool but the OT in preschool wouldn't admit it was from SID but we still got some supports and it helped.
For instance, when sitting in group for a lesson, Dave would always sit back away from the group. The teacher often invited him to sit up with the group but he didn't want to so she just thought, hmmm that's interesting. Dave hates socks and I have to get certain ones. He didn't wear underwear until about 2 months ago. He is 6 1/2. He hates jackets and sweatshirts and will often try to wear shorts and a t-shirt on the coldest of days. We live in california so often I can let him if it is going to be a major tantrum issue. Fortunately his teacher was understanding. My 2nd graders teacher would have had a meeting with me and likely referred me to the principal for being a neglectful parent.
But if we don't make a big deal about sitting with the group or about his clothes, and getting messy and you keep a very structured environment without alot of free time for him to get overstimulated he does ok. That is what he had this year. A flexible yet very structured teacher who was perfect for him and he was the star pupil. Thing is I know Dave is SID and I have the tools at home now to work with it. I consult with an OT when I have questions about his SI and it helps to know for sure that this is one of his issues and what I can do about it. If he has a hard time in school with his SID in the next few years I will re-refer him for an IEP.
I have been told by our clinical psych that Dave would qualify for what is called a regulatory disorder. That is in the early childhood diagnostic book. I can't remember what it is called but it basically is for kids under about 6. That is the one thing we have been able to nail down with him. She has told me that untreated regulatory disorders often turn into other things as the kids get older like bipolar, adhd, etc. So it is worth looking into and addressing now.
Renee