MMJMOM
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Joined: May 22, 2011
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 Posted: Thu May 10, 2012 4:10 pm Post subject: |
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my son is only 6, but he would LOVE a day that you described! IN fact, he loves to take the train with his dad, hold the tickets, he loves to pay for things, I often give him the $ and let him figure it out. I think there is a lot of generalization going on with Aspergers. When I was looking into diagnosis for my son, I ruled OUT Aspergers becaseu of the DSM-IV criteria. When I read actual books about Aspergers, he fits. My son is very mildly effected, but he is effected none the less.
_________________
Dara, mom to my beautiful kids:
Jayden 7, diagnosed Aspergers and ADHD possible learning disability due to porcessing speed, born with a cleft lip and palate.
Miranda 4
Maya, who would be 5, my forever angel baby
Ethan, new to the world! |
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AardvarkGoodSwimmer
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Joined: Apr 27, 2009
Age: 50
Posts: 4999
Location: Houston, Texas
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| Posted: Thu May 10, 2012 8:40 pm Post subject: |
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| Tubbs wrote: | Thank you all for your replies. It's helpful to get a bit of perspective on the situation.
When I read about ADHD symptoms, I'm constantly thinking "Oh yes, that one fits, and that one, and that one." But when I read the symptoms for AS I'm more like "Yes, I suppose so, No, not really, Hm, just a little bit, No, not that one" etc, which is why I'm wondering. I guess it's possible that we may get a diagnosis of severe ADHD combined with his language problems, because it sounds like the combined symptoms could present in a very similar way to AS. Would that be 'better'? Who knows... . . . |
If he gets a diagnosis of ADHD, some teachers may treat him as a 'bad' kid in the standard authoritarian mindset even though that's not the purpose of the diagnosis. Asperger's has famous people like Thomas Jefferson and Jane Austen who were probably on the spectrum. (I mean, sometimes this seems like such a stereotype that we need to point out, no, no, no . . . most people on the spectrum, like most people generally, are not famous.)
At age 15, I really think the odds are that your son will be treated better with a diagnosis of AS. And probably the same for college.
Maybe when he's in the corporate world, he could get a re-diagnosis. In some business circles, ADHD almost seems like a prestige diagnosis, but not in public school. |
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momsparky
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| Posted: Thu May 10, 2012 8:57 pm Post subject: |
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I guess the reason I keep posting is that we got a diagnosis when DS was in 1st grade, but it was done badly and made no sense to us (we thought it was a mood disorder.) We had a lot of stereotypical notions about AS, none of which fit my son.
The long and short of it was the more we treated my son as though he had AS, the better our lives became (there are many specific parenting and teaching techniques.) Eventually, when things fell apart in 3rd=4th grade (as is typical with a "high-functioning" child on the autism spectrum) we got an ADOS done by a multi-disciplinary practice headed by a neuropsychologist. They re-diagnosed him with AS, but were able to explain all of the issues and symptoms and how they fit in a way that made sense.
The long and short of it is, as I said before, the name of the diagnosis didn't matter as much as the accommodations and interventions, since those can be very specific in a kid on the spectrum, and I wish I'd been more educated about the breadth of the spectrum and had better tools earlier.
The ADOS is a good thing, it's one of the better tools out there, and I would consider the fact that your post-screening meeting is 2 hours long a good sign. Less successful assessments by less successful assessors tend to be rushed and not explained well. |
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zette
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| Posted: Fri May 11, 2012 8:19 am Post subject: |
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| Quote: | | The long and short of it was the more we treated my son as though he had AS, the better our lives became (there are many specific parenting and teaching techniques.) |
Momsparky, I'd be curious to find out more about where you found these specific parenting and teaching techniques. Any specific books or therapies that you recommend? |
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momsparky
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| Posted: Fri May 11, 2012 8:58 am Post subject: |
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LOL, zette, mostly I learned them here! (That's why I created the Parenting Index) Tracker's book Strange Kid at ASDstuff.com was a big help, also The Complete Guide to Asperger's Syndrome helped a lot.
We did get a lot of support from the neuropsych team just after DS was diagnosed, but coming here with problems and crowdsourcing answers has been my biggest source of support. Basically, providing scaffolding, structure, social stories, sensory support, etc.
And something I am always sorry I forget to print for teachers is this: http://www.casenex.com/casenex/cecReadings/instructionalManagementTips.pdf
Somewhere, I found an article that I thought I'd posted here - mostly for classroom teachers of ED students that I found helpful (something about organizing behaviors into categories to help pick your battles, and about not engaging) and I can't find it now.
(edited to change the PDF to the correct one, D'OH!!!) 
Last edited by momsparky on Fri May 11, 2012 6:03 pm; edited 1 time in total |
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Tubbs
Hummingbird
Joined: May 07, 2012
Posts: 23
Location: Calgary, Canada
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| Posted: Fri May 11, 2012 10:14 am Post subject: |
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I'm almost certain that he's ADHD (Inattentive). We've just gone through the assessment process with our younger son, who was diagnosed with it, yet presents less severe symptoms than our older son. It was talking to the ed psych about him that made DH and I look at each other with wide eyes and say "Oh. Well, if you think THIS kids has problems, maybe we should bring in the other one to get looked at too." So, I would bet big money that we're going to get that diagnosis, along with poor working memory and dysgraphia. The language problems are going to bring something too, but this is where I'm so unsure. Does he have a "Significant" social impairment? No, I don't think so. There's an impairment, but does it have a major impact on his life? Not that I observe, but what do I know, I'm just his mother!
We will wait to see what comes. Our appointment is on Monday, so I'll report back. As you say, Sparky, it's good that they've booked us in for a long appointment so we'll have lots of time to ask questions.
I really appreciate the input you've all given. It's helped me understand a little better - I think I need to do some serious reading, because I'm obviously woefully ignorant on this subject. The problem is, the more I read about AS, the less I can make it fit my son. |
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MMJMOM
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| Posted: Fri May 11, 2012 11:02 am Post subject: |
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I think the lingo is what gets us. And what got me to say NO WAY could my kid be on the spectrum...casue he has social issues, but significant? Well, who determines what is significant? To me, having one freind is great, to another mom or another family one freind might be a significant issue. My kid has a handful of freinds, but it also depends on the kids they are freinds WITH. Are they more understanding? Maybe they have kids with issues in their families? Maybe their parents instill values in them that other kids might be missing....
It is all so subjective, that is why the DSM-V might hae a clearer pic of ASD kiddos. You might want to read that and see what you think. WHile I DIDNT see my son in the DSM-IV defenition of Aspegers, I CLEARLY see him in the DSM-V defenition, fitting in the Autism 1 category.
If your son isnt significanlty impaired by his issues, I wonder what made you seek out help? School suggest it? Did they see something you dont?
_________________
Dara, mom to my beautiful kids:
Jayden 7, diagnosed Aspergers and ADHD possible learning disability due to porcessing speed, born with a cleft lip and palate.
Miranda 4
Maya, who would be 5, my forever angel baby
Ethan, new to the world! |
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Wreck-Gar
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Location: USA
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| Posted: Fri May 11, 2012 11:40 am Post subject: |
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| Tubbs wrote: |
Interesting that you say it can't be Asperger's because of the language issue, because I've also read that, yet this seems to be what the Ed Psych has picked up on. I need to do some more reading about PDD-NOS. I can't believe that he will be diagnosed with classic autism, because his problems just aren't severe enough. |
That's just because, by definition, Asperger's does not include a language delay. |
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Tubbs
Hummingbird
Joined: May 07, 2012
Posts: 23
Location: Calgary, Canada
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| Posted: Fri May 11, 2012 11:47 am Post subject: |
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MMJ - Yes, you're right, everything seems kinda vague. My son has about 6 good friends at school, plus a couple of neighbourhood boys he's known forever. No real 'Best Friend' until this year when he's really made a connection with one particular boy. They come from all kinds of backgrounds, and I have never got the impression that they 'allow' him to be friends with them, or let him tag long because they're kind. When I see them all together, my son definitely doesn't seem to stand out in any way. They all seem to be developing their independence together (e.g. the trip they're making this afternoon to Chinatown with no parental involvement, trips to the movies, mall by themselves etc). He enjoys being with them, and will often seek out friends on weekends when we don't have plans. But not always; sometimes it seems he would prefer a day doing his own thing, usually with his brother (TV, gaming, computer, trampoline). Maybe on those days he doesn't have the energy for being social.
Regarding the ADOS - No, the school didn't suggest it. Being at the Ed Psych with our other son made us realise how overdue older son was for a reassessment - for educational needs, rather than social. It was the Ed Psych who brought up the issue and asked if they could assess him for Asperger's (specifically this, no mention of any other kind of autism, which is what has me confused, since they have copies of all reports since he was tiny, clearly showing how his language was delayed and disordered). However, it didn't come as an enormous shock when they mentioned this, so I think at the back of my mind I've felt like something wasn't right. I hate to think I've had my head in the sand about this, but maybe I have 
Anyway, I do trust that these people know what they're doing, and at least we don't have long to wait. |
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Tubbs
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Joined: May 07, 2012
Posts: 23
Location: Calgary, Canada
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| Posted: Fri May 11, 2012 11:56 am Post subject: |
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| Wreck-Gar wrote: | | Tubbs wrote: |
Interesting that you say it can't be Asperger's because of the language issue, because I've also read that, yet this seems to be what the Ed Psych has picked up on. I need to do some more reading about PDD-NOS. I can't believe that he will be diagnosed with classic autism, because his problems just aren't severe enough. |
That's just because, by definition, Asperger's does not include a language delay. |
Yes, I understand that now. Maybe the ed psych mentioned Asperger's first because it initially sounds little less 'scary' to ignorant parents like me. What she really meant was "We want to assess him for autism spectrum disorders." I know that's the case, since I'm pretty sure it's the ADOS test that was being administered. |
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MMJMOM
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| Posted: Fri May 11, 2012 11:59 am Post subject: |
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My son has Aspergers, and he did have a language delay. Maybe because he had a cleft lip and palate which contributed to his speech issues, but he alwyas had speech and language, just slightly behind but cought up quick in preschool. I think again, it is subjective. One doc may say Aspergers, one may say PDD-NOS becasue of a speech delay in history, etc...
I found I was working with my son as many do with ASD kids before he even had a diagnosis. What I did was a lot of explaining rules that most kids just instinctively knew. I foudn myself allowing him to fidgit, or have chew toys. I found myself making him picture charts or behavior charts with clear rules, etc...He could read, talk, etc...but I just knew he responded better to visual input, and used that to our benefit.
I think some professionals can see in our kids what we dont, and it may be very mild or slight...or they may say NO ASD...either way you will be well informed!
_________________
Dara, mom to my beautiful kids:
Jayden 7, diagnosed Aspergers and ADHD possible learning disability due to porcessing speed, born with a cleft lip and palate.
Miranda 4
Maya, who would be 5, my forever angel baby
Ethan, new to the world! |
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Eureka-C
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Age: 40
Posts: 517
Location: DallasTexas, USA
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| Posted: Fri May 11, 2012 7:34 pm Post subject: Re: Asperger's doesn't really seem to fit... |
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Basically, diagnostically there are three main areas which are looked at. There has to be something in all three areas to get the Autism or Asperger diagnosis: Communication problems, Reciprocal Social Interaction problems, and Repetitive, or Sterotyped, or Rigid behaviors.
Communication problems may be at the most severe an inability to communicate verbally, echolalia, language delay, receptive/expressive disorders, and less severe are semantic pragmatic disorders, and nonverbal communication deficits. A person on the spectrum may have one or many of these difficulties, also noted is often odd intonation (too loud, too soft, odd inflection) flat speech, and pragmatic speech (talking like a book) (I may have missed some problems)
Reciprocal Social Interaction may include problems with emotions (expressing emotion, reading emotion, understanding emotions, from the most severe at not recognizing even the most basic emotional expression, to the milder not understanding the nuances of emotional exchange - not knowing what to say in response to emotional expressions from others. Intermingled with that can be problems with nonverbal communication from the severe of not reading emotional expression, not being able to make the faces for the basic emotions when prompted (most people even those with ASD do it when they feel, even those who don't express emotion often). to not using/seeing/understanding basic gestures like finger in front of the lips means be quiet, to the least severe of not reading the tone, and subtler body language indicating someone is not interested in what you are talking about or someone is being sarcastic or someone is lying. In this area is also theory of mind. At the most basic level there are problems with realizing that everyone does not know what you know. This leads to expectations that others will say/do/react as it is imagined by the person with autism and frustration when you don't because they can't imagine that you don't know what they know. Less severely is problems with give/take interactions, participating in games, social playing around, problems with the compromise of social play, inferring what people want, think, expect and recognizing the other person's point of view. There are often difficulties with understanding humor of certain types, sarcasm, and slang unless specifically taught.
Finally is the repetitive, stereotyped or rigid behaviors. This may be repetitive speech, repetitive tasks both of which can be simple or complex. So a younger child may say the same phrase over and over, or use phrases from movies/books for responding to questions/conversations/expressing needs. While an older child may seem to get stuck saying the same lines from a movie, using scripts for interactions and difficulty when those scripts are not followed. Repetitive tasks can be lining up objects, putting on shoes over and over, having to play the same game or with a toy the same way every time. Stereotyped behaviors or self-stimulatory or stimming can be repetitive motion/action that seems to be self-soothing, like spinning, flapping, moving fingers in a certain way, rocking, biting nails (socially acceptable stimming), jumping, rubbing a textured object, staring at lights... the list is never ending and includes both simple and complex actions. Rigidity may be a need for structure, for things to go as expected, becoming upset at changes in routine, needing to finish tasks. It may be just that the person performs better/feels more comfortable in structure and knowing what to expect up to perfectionism up to a level of obsessiveness that can be diagnosed as obsessive/compulsive. A person on the ASD may not have all of these.
Not a diagnostic component, but almost all people with Aspergers have anxiety related to rigid thinking, social deficits, perfectionism, or in my opinion people always expecting you to be something you are not.
Again not a diagnostic component now, but often seen are sensory integration issues (hypersensitivity - sensory avoiding and hyposensitivity - sensory seeking and proprioception - balance, and fine and gross motor skills problems)
Also not diagnostic but so common that the DSM says it is subsumed under the diagnosis is ADHD.
So, in your example, here is what I see...
| Tubbs wrote: | ..but I think that's the diagnosis that's coming the way of my 15 year-old son. We've been having a new, and very overdue Ed Psych reassessment done, and from the first appointment she's been hinting that we may have other issues going on. He's having the Autism assessment tomorrow.
A bit of history: Physical milestones all hit, fine motor delay, VERY language-delayed - in fact all early investigations surrounded his late and odd language development. The diagnosis given when he was 5 was Semantic Pragmatic disorder (this is in the UK, I believe this diagnosis is not given in the US, or in Canada where we now live, but I think it is generally accepted to be somewhere on the spectrum). Lots of therapy, language came along slowly, but is still 'odd'. He'll often not be able to find the right word and will substitute something similar. Communication problem
Voice and tone is sometimes 'flat'. Has a great vocabulary which is sometimes used in an unusual way. Sometimes talks too long about something he knows about, but will realise quite quickly and say "Sorry, I know you're not interested in this..." and stop.
Reciprocal Social Interaction
School has been tough for him educationally; diagnosed learning disabilities - dysgraphia and very poor working memory. Math is tough. He's probably ADHD-PI too. Great imagination - he's writing a book at the moment (which isn't that fantastic, but I think it's fantastic that he's doing it and we're encouraging him all the way...) He's in a special program for kids with LD in a mainstream class and he does fine. Getting better at taking responsibilty for his homework etc. fine motor problem particularly in writing is common
Socially, he has friends, doesn't make lots of new friends, but does well with those he has. They all seem to be the same as him - goofy and a bit awkward, but funny and good company. Good sense of humour - not at all literal, loves irony and puns. Eye contact fine with those he knows well, but a bit off with unfamiliar people. Often will speak out of turn, sometimes blurts out things that would be funny in another setting, but he doesn't realise when it's appropriate Reciprocal Social Interaction - sometimes will realise after he's said it. Good at picking up others' emotions by their facial expressions. every person on the spectrum does not have every problem
Had sensory issues when he was little (haircuts were bad) and still has a few, but not major concerns - still doesn't like haircuts much, and cuts labels out of clothes if they're scratchy. Hasn't enjoyed having braces, but nothing unusual there. sounds like a hypersensitivity to touch Nothing that affects daily life. Races go-karts, so isn't bothered by loud noises, strange smells etc. again every person on the spectrum does not have the same sensitivities
No obvious stims, although he does a little throat clearing cough often when he's talking. this could be a stim or tic No other times - to me it's more of a 'gathering thoughts' tool because the words don't come easily to him. communication problems Could also be a nervous thing because he knows his speech isn't that clear. anxiety
Never has meltdowns and hasn't since he was very young and didn't understand any language. They were a regular occurrence when he was 3-4 or so, but not since then. He's the middle of three kids and is the easiest-going of all of them. (16 yo NT daughter is the hardest on my nerves!) Does he have shutdowns?
Likes video games and the internet, but no more than any other 15 year-old boy I know; no other special interests. Did have several obsessions when he was little. not every person with ASD has special interests and some of them can blend in better than others
No problems with changes in routine, clothes, food or anything, although would not choose change just for the fun of it (e.g. I have suggested re-painting his bedroom a couple of times and he's declined with thanks, but when I rearranged his room without warning him, he really liked what I'd done and would probably be fine if he came home and I'd re-painted). but it sounds like he prefers/would choose the same things
Does this sound like anyone else's kid? From what the Ed Psych has said, it sounds like they definitely think it's Asperger's, but to me there are too many things that don't fit. How mild can Asperger's be? Are there any other diagnoses which they might come up with? Could this be just a language disorder and a general Aspie-ish quirkiness?
Thanks for any input, and Sorry for the long first post! |
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Anyway, to me there are enough warning bells to warrant being tested.
As for the PDD-NOS, that can be mild to severe as well. It is often used for younger children whose deficits may fall into "normal" as many children have those deficits, and when the social demands are not as great. It is also given and was designed for when someone meets two of the above criteria, but not enough on a third criteria, which gives you lots and lots of variety.
I probably have missed a lot but I hope this helps clarify some things. |
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Tubbs
Hummingbird
Joined: May 07, 2012
Posts: 23
Location: Calgary, Canada
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| Posted: Fri May 11, 2012 8:09 pm Post subject: |
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WOW! Thanks, Eureka, for that incredible analysis. I think you're 100% right in all the things you've picked up on. My son seems to have little problems in a whole bunch of areas, and a few bigger problems which are affecting him more. You're very percerptive. No, I don't think he has shutdowns. What do they look like?
I'm really glad we're having this assessment done before he goes to high school in the fall. It will be good to know what we're dealing with, and we'll also have a little time to get some specific coping strategies going.
On a slightly different subject, has anyone had/heard of success with the COGMED program with ASD students? http://www.cogmed.com/ We're doing it at the moment with our younger son to try to bring his working memory on-line, and we're really liking what we're seeing so far (3 weeks out of 5 completed). I asked the therapist yesterday if she'd seen it done with ASD students and she said it could be very useful. It's our Ed Psych's first line of attack now for ADHD, before they suggest medication, and I'd really like to get my older son doing it too. |
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DW_a_mom
Ignoring the To-Do List
Joined: Feb 23, 2008
Posts: 9339
Location: Northern California
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| Posted: Sat May 12, 2012 12:13 pm Post subject: |
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I haven't heard that program discussed, but looking it over, if your son is fine with it and cost isn't an issue, I don't see why not. It all depends on your priorities with your child, where you see him needing the most help to access his best future.
I am with MomSparky in that ultimately this is about what works. I have a 14 year old high school freshman boy with Aspergers, and an 11 year old 6th grade girl who is most likely ADD (but not ADHD). Strategies with the two of them are different - what works with my son can backfire with my daughter, and vice a versa. My son is very logic based, and committed to doing what he thinks is the right thing. Trouble is, his thinking on what the right thing is in many situations is, in my opinion, just wildly off base. So we talk and talk and talk, and role play a lot. With him, if I want permanent change, I have to win the logic war. My daughter, on the other hand, will completely take advantage of that, and play me like a fiddle - her social/people instincts are much stronger than anyone else in our family, and she uses it. So with her, it is best just to set rules and be consistent in enforcing them.
My son has matured past many of his sensory issues, but for a very long time it was extremely important that we conform his world to his needs. That is what worked, and what allowed him to mature in his own time and in his own way, to where he is now, basically doing everything except attending noisy, crowded, hormone fueled school social events (his choice). He is considered an excellent leader by his peers, and while he doesn't have lots of close friends, he does get assigned to leadership roles in group projects ... it seems so counter-intuitive for an Aspie, doesn't it? But when he learns tools, he uses them. And he has learned tools.
My son's biggest disability has always been in the disgraphia, and he has an accommodation at school allowing him to bring a netbook on which he types everything. This is a common co-morbid with ASD.
My daughter's biggest issue was always a combination of processing speed and not being able to stay on task, but she is of gifted intelligence, which gave us a little work room for school - the teachers just weren't that worried that she wasn't finishing her tasks. So we all played around with strategies for a while, and let her find her own way. The funny thing with her is that she works best when she can multi-task: she does her homework faster and better if she is watching TV. Go figure. Fortunately, she has adapted far enough and well enough on her own that medication is not likely to ever be warranted.
Where as having the TV on agitates my ASD son, unless he has time to really zone out with it.
I have heard theories that the two are related, and given how many families are likely to have both if they have one, I guess they must be. And even when you have the answer, you'll have to adapt for your unique child.
It does sound like you have a borderline or subtle situation, but remember that you also have years of your son adapting, which can cover up some of the source issues. Definitely a tough call, but I hope that the answers you are given will get your son what he needs most. Good luck.
_________________
Mom to an amazing AS boy (plus a non-AS daughter). Have at least a few AS genes myself, although probably more NT than AS.
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Think of the greening of my name as an emeritus thing; I used to be a moderator but am retired and have no authority to act |
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Tubbs
Hummingbird
Joined: May 07, 2012
Posts: 23
Location: Calgary, Canada
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| Posted: Tue May 15, 2012 12:18 pm Post subject: |
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Well, we went for the appointment yesterday. Turns out I got it wrong - this was basically an information gathering exercise; she wanted loads of information about what DS was like when he was little, how he is today etc etc. It was quite difficult, actually, because we were trying to remember back 10 years! So, we didn't get a diagnosis, but I did ask her outright "You think he's on the spectrum, don't you?" and she said that she was pretty certain he is. There were a few key indicators for her, for example, the verbose way he answered the vocabulary questions ("What is an island?" He answered something like "It's an area of land surrounded by a body of liquid.") I can't think of any more, but she had them all written down and they were indeed typical of how he would answer a question like that. There were other issues too, as noted previously, which by themselves wouldn't really mean anything significant, but put together they do cause him some difficulties. She also thinks he's ADHD, as I suspected. She did say that the IQ test showed he's bright, especially in his visual-spatial skills.
I'm pretty sure it's going to be a complicated diagnosis when it comes. We saw one of the other psychologists as we were coming out, and she commented that we looked a little 'wrung-out' from the session. Then she commented sadly "It's so late" (meaning our son is already 15 and it's late to get this diagnosis), which made me feel really sad. We need a positive attitude going forward, and I may have to tell her that if she has this approach when we see her for the ACTUAL final de-brief at the end of the month. |
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