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insegnante
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| Posted: Oct 01 2008 at 7:32pm | IP Logged
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Before I start rambling let me say I am not looking for arguments or controversy -- if you don't have time to read this closely I know words like "skeptical" might jump out but I'm genuinely just looking for information here  because of my own situation.
Perhaps I'm really missing something in my understanding of the "core" of autism or "autism spectrum disorders" and what constitutes the "social" impairment/whatever the word should be. The social/communication issues are essential, right? If the pretend play is there, and pointing stuff out to others out of "interest" is there, is there still something that can constitute an autistic-type social impairment? Well, I guess there's Asperger's, but no one seems to think of that with a speech, language, and possibly cognitively delayed 4-year-old.
I hope this doesn't offend anyone whose kids have one of these diagnoses, but I have to admit I'm in the camp that's skeptical about just how much the definition seems to me like it must have expanded to be applied to so many kids. But I'm actually posting to ask for any really good descriptions or books you have read to help understand what it is that "justifies" diagnosing at least some of the kids who wouldn't have been identified as autistic a couple of decades ago. I can believe there's more to it than people once associated with the word "autistic," even if I will continue to wonder about the numbers. But I've read a lot about it (no full books or anything though) and I feel like I must be missing something if there really is that much increase in autism-related conditions needing attention.
Let me say a very large part of that is how much these Asperger's descriptions remind me of myself as a child and to a lesser extent now, and it's not just the social awkwardness aspect. I don't wish I'd been diagnosed and treated for those quirks, although I do think a little extra non-professional help with some things could've been beneficial. Just like most kids will need a little extra help with one thing or another and not need a diagnosis for it.
Today my 4yo son went to a developmental pediatrician for evaluation (which was pretty literally fun and games for him!) I had met with her last week without him to discuss his history and our concerns, and next week she'll be giving me her impressions and recommendations. I will try not to bore you with all my thoughts about my son, the visit today, and so on (I have posted about his development on this board before.) I will say I'm not sure the whole autism spectrum thing isn't going to be brought up when she gives me her evaluation and I'm not sure if I will or won't be able to "buy" it, because I am so confused about all the talk of autism these days.
I may be back to edit this later if I reread it and realize it's even less clear than I think, but off to Trader Joe's right now before it closes...
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Theresa
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folklaur
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| Posted: Oct 01 2008 at 7:55pm | IP Logged
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 I may not be much help. I feel the autism dx is thrown around much too easily now. It seems to be a catch-all dx for "any socially innappropriate behavior." All that is doing, imnsho, is causing the kids with actual disorders to fall through the cracks, yet again.
I can tell you that we noticed a "difference" with my ds from birth. He always slept in any overstimualting situation. He NEVER, and I mean never, put things into his mouth, or mouthed toys, etc. He spent so much time in his swing, as teh repetitive motion of it was one of the only things to soothe him. He would not eat any solid foods until over a year (and I had a Mom who was all for giving kids a little rice cereal at just a few weeks old  . BUt he would eat NOTHING, only nurse) He could draw the blues clue's thinking chair on his magna-doodle at a year old almost perfectly - but he didn't talk until he was three - and then his language exploded and he started (and still does) use extremely advanced language correctly, as long as it is in his realm of interest. He doesn't know how to pretend play if it is not just a mimicry or slight variation of something he has seen on TV/movie or read about. He never recognized "the look" that I am able to give my other children, iykwim. He always carried a part of a toy (not a whole toy, just a part, always. For the longest time it was an ear from a mr. potato head.)
As you can see, we had a lot of issues, and they weren't things that just showed up later, they were there from the moment he was born.
I get very, very frustarted when EVERYONE has a autism spectrum dx (along with EVERYONE having "gifted childen." They may be "bright" - but gifted? Everyone seems to have kids who are gifted, or who have a learning diability, or both.)
So. My child my look to someone else as just a socially awkward child. But I know from the day in-day out routine that there is more, and we work on it all the time.
My DH feels he has the traits also, and that his dad does big time.
I don't know that this really answered anything for you.
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insegnante
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| Posted: Oct 01 2008 at 9:18pm | IP Logged
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Laura, I saw a post on your blog a while back in which you expressed similar thoughts about ASD diagnoses. I guess you can understand why I am nervous about the possibility of my son being diagnosed with one of these disorders if it is not so clear to me that he fits the profile. I have interacted with some people with diagnosed kids who seem now to see others through the lens of ASD symptoms almost to the point that it just resembles some kind of parody. (And I'm not talking about my own son since I can understand why people would wonder if autism explained his delays/etc.)
Well, I definitely didn't notice anything different about my son from birth. And despite looking for them, I didn't notice any autism warning signs early on. It wasn't until his language progress practically stagnated for most of the year he was 2 that I realized something was unusual, and he picked up where he left off just before he turned 3. It's just that he has never "caught up" with other kids his age.
What struck me about our 4-year-old at the visit today that was easier to see there than it is at home is that -- I don't even know how to explain this quite right -- while he wasn't uneasy in the doctor's presence, and he talked the whole time and did often respond to things she said, he just didn't seem bothered by not responding to her, if that makes any sense. He was very easily distractable by all the toys around him which I'm sure is normal in itself but he seemed to feel no "obligation" at all to pay attention to this nice older lady doctor who was talking to him and still trying to engage him in conversation about the last thing he had been playing with. It didn't feel like a pressure situation to me at all and I didn't think he was shutting her out because she was causing him stress or anything at all like that. A lot of what he said was "Here's a ____" (fire engine, Ernie, phone, giraffe...) He has demonstrated a little more "conversational" interaction with his own family, but really, only a little more. I feel like he's getting there, but after today's visit it was also easy to see how he might have a separate issue with the whole concept/practice of conversation aside from language delay giving him less to say.
Now, if his cognitive level is only say that of an average 2.75-year-old or just turned 3-year-old, perhaps that is in keeping with his overall developmental age? I am not even sure if what I described above is "normal" for a child that much younger than hisage. But I'm also not at all sure his cognitive level is really that delayed. I usually don't think he has the "mind of a 4-year-old," or the emotions of a 4-year-old, but his understanding of phonics, counting, and patterns would serve him well if he went to school now, probably even if he were beginning kindergarten though he just turned 4 in August -- if only he were better able to communicate and respond to others' communications.
I tried to engage him in conversation the other day about the trip we had just taken to Costco. I spoke 2 or 3 sentences about it, and then he observed "Costco got Christmas trees." So I said a little bit about the Christmas trees, and it not being Christmas yet, and so on. He said in response, "Christmas trees get out of Costco." I think he was trying to express his interest in removing a Christmas tree from Costco and bringing it home! He said the same thing again a little bit later in our "conversation" in which those were the only really clear sentences I recall. That is about as much "conversation" as I get at once with him.
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Theresa
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Karnak
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| Posted: Oct 04 2008 at 9:24pm | IP Logged
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When my eldest daughter was diagnosed as classically autistic the assessment tools were more basic than these days. My youngest son has high functioning autism and was described as being on the autism spectrum. I think the diagnostic tools are better these day but I suspect there are more kids affected with autism. This may be due to environmental factors such as the leaching of plastics, pesticides etc or the vaccinations as some parents claim. My husband who is a toxicologist considers that some children have a genetic disposition and environmental factors may push them over to autism. As many families have more than one child on the autism spectrum we strongly suspect genetics as the major factor and some families have kids with language delay or ADHD along with one autistic sibling so you must wonder if there is a genetic trait in these families as well as such as ours. In time I think they will finally find the genes that are the root of the problem and maybe there will be ways to correct them without so many doctors always proposing that abortion is the cure-all. Other conditions they have been better able to help why not kids with autism with better therapies, drugs etc.
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Karnak
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| Posted: Oct 04 2008 at 9:30pm | IP Logged
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I should have also said that maybe AS and other types of autism may be useful genetic variants as we recently saw that young man with AS on TV who is brilliant at maths and won a medal for his theories. I just wish those like my eldest who is very severe and mentally disabled could be really helped to improve
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KC in TX
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| Posted: Oct 04 2008 at 9:56pm | IP Logged
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My son was 6 when he was diagnosed with autism. He's on the high functioning end and for the longest time could not hold a conversation with anyone. When he started his diagnosis process, he first visited with a psychologist. The psychologist was confounded that my son didn't care to respond to his questions or to do as he asked. He thought my son had ODD (oppositional defiant disorder).
I think that the diagnosis is not really what matters. What matters is getting the help he needs. My goal is for my son to live his life independently because I will not always be there for him.
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At_His_Feet
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| Posted: Oct 07 2008 at 7:04pm | IP Logged
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My 4 year old sounds very similar to yours Theresa! We are about to go to an ASD specialist clinical psychologist to find out one way or the other, if our son has ASD. I think that it's probably more of a developmental delay, but he also has many ASD traits.
I totally agree with KC, that it's the help we can get with the dx that matters!
Have a look at the DSD-1V? We would see our aspie so clearly in it.
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Tricia
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Taffy
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| Posted: Oct 08 2008 at 3:56pm | IP Logged
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Now that's a loaded question! I recently answered this question for my parent education portion for my son's RDI therapy. Here's what I wrote to our consultant...
Autism is essentially a problem with the "wiring" in the brain. For example, many parts of the brain have to work together in order to carry on a conversation with another person. We are able to read the myriad of communication signals being sent to us instantaneously and respond appropriately to them. We simultaneously understand what the tone of voice means, what the person’s facial expression means, how the person’s body is emphasizing or being totally apathetic to what they are communicating. We can understand if the person is being serious or is joking around. Plus, we can translate the words we are hearing into visual images, relate the words to our own personal experience and decide on a response or course of action dependent on what we’ve heard. All of these things require all of our senses to work synergistically in order to be able to understand and hold up our end of the conversation.
I’d recently read a very interesting theory as to what the problem with autism is. In the average adult brain, there are specific locations that process specific kinds of information and there are many “highways” that connect these parts to work synergistically and efficiently. This is important for brain function in order to keep incoming information organized and easy to retrieve. This “localization” of brain functions develops throughout life. The pre and post-natal child has a very undifferentiated brain; thus, when stimulated, the whole brain responds to every stimulus. Very early and quickly, the brain organizes all of these stimuli in order to work more efficiently. It is speculated that, if this process of differentiation is stopped too early, that the brain is unable to respond to stimuli in an efficient manner since too much of it is alerted to every stimulus. This would explain why autistic people tend to be very “single-minded”. Instead of different parts of the brain responding to a stimulus synergistically, too much energy is focused on a single part of the brain’s response to it.
An interesting book that details this theory more fully is, The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science, by Norman Doidge. Many of the ideas that it presents are fully in line with my thinking before and after reading the book.
I view autism as a medical condition that has affected brain development. While the initial brain injury happened very early in life, the brain is able to overcome it’s difficulties with proper stimulation provided that whatever is causing the brain malfunction is removed from the equation. For some, the initial brain injury is simple and the only concern is to help the brain develop from a non-differentiated state with poor communication between functional parts to a brain that has developed specific areas to respond to stimulation with communication flowing well to different areas. For others, the brain is in a chronic state of inflammation/irritation and is impeded in its ability to form the neural connections necessary and until these irritants are removed or made ineffective, the brain’s ability to learn and develop will be impeded.
Is that clear as mud? A simpler analogy is to think of a computer without a platform on which to interact with the user. The computer has all the hardware that it requires to function properly. What is missing is the software that allows the user to interact with it.
Hope this clears thing up a bit at least.
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Susan
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insegnante
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| Posted: Oct 09 2008 at 11:34am | IP Logged
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Thanks to everyone for your input.
I think I can get a better idea of why "autism" is an appropriate diagnosis for many who do not fit what was once the common image of autism as a severely disabling condition, but while I can see that my son has a pattern of strengths and weaknesses that has a lot in common with autism/ASDs and I am trying to be open to the idea that he could "be autistic," I keep ending up thinking and feeling that he really does not fit what are supposed to be essential criteria. If not for his speech/language delay, I'm not sure there would be any clear, significant "social" impairment. I think the developmental pediatrician admitted something similar about the social delay possibly being dependent on his language delay. I find it confusing that with limited language/understanding he's expected to interact socially like a "normal" 4yo or this would be considered a separate delay?
And as for repetitive activity/restricted focus, I'm just not seeing it, nor has she cited anything from her in-person evaluation of him that meets that criterion. At the last of the three visits, I realized that the dev. pediatrician seemed to misunderstand some of what I had previously said in ways that support autism spectrum disorders -- I mean, she actually heard/noted things significantly different from what I meant to say about his use of language and how he plays, I'm not just arguing with an interpretation of whether it is normal or abnormal.
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Theresa
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Taffy
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| Posted: Oct 09 2008 at 12:36pm | IP Logged
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Theresa,
The biggest indicator, in my opinion, would be your son's ability and willingness to engage with you and those around him. Does he seek you for comfort? Does he seek others for comfort? Does he play with others? You don't have to be verbal to play, my verbal neurotypical 5 year old hardly says anything when he's playing trains with others his age. Games like catching a ball can be completely non-verbal.
The other big thing to watch for is a loss of language. Does he say/use fewer words than 6 months ago?
Repetitive play isn't necessarily an indicator, same goes for all the other stereotypical behaviours associated with autism.
I'm not questioning your judgment or your pediatricians. I'm simply speaking up here after reading these words from your post:
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| I think the developmental pediatrician admitted something similar about the social delay possibly being dependent on his language delay. I find it confusing that with limited language/understanding he's expected to interact socially like a "normal" 4yo or this would be considered a separate delay? |
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I do understand what you're saying here as I used to say it myself about my own autistic son. My parents are both immigrants and speak english as a second language. My mother especially would be considered withdrawn by the average person but it was due to her shyness in speaking english with her thick accent.
The thing with autism is that it can often seem very mild when children are young. In our own case, it's becoming more obvious as our son gets older and his case has always been atypical. A good site to check out for help in figuring this out as well as for finding ways to help your child learn to talk is Communicating Partners. Another good thing to check into is apraxia and aphasia, both conditions do affect language development. Selective mutism might be something you want to google as well.
I hope that you can get to the bottom of this and find whatever help your son requires, if any.
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Susan
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insegnante
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| Posted: Oct 11 2008 at 1:40pm | IP Logged
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Yeah, it's just that even after considering that I could possibly see something fairly subtle about difficulties with communication separate from a simple language delay and thus thinking "Maybe this really is what autism can look like?", I've read that he had to have other things I think he doesn't have in order to qualify as "autistic." Here's one example I just happened to find while reading about autism generally, it wasn't one of the ones I read before:
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Core symptoms which define autism consist of deficits of varying degrees in three areas of development:
1. Defective social or personal relatedness behaviors
2. Language or, more broadly, communication difficulties
3. Play or preferred activities which are characterized by preoccupations having a repetitive or stereotyped quality.
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(from pediatricneurology.com)
Isn't there something called "pragmatic language" difficulty that could cover the communication aspect?
Thursday we went for a screening conducted by a public school special ed teacher. When she met us outside the room and introduced herself to him in a very kindly, non-intimidating way, he did not verbally acknowledge her at all or even smile shyly nor did I notice him look at her directly, but he certainly seemed aware of her, as his face assumed a rather unhappy expression and he didn't seem to be directing attention elsewhere.
We entered the room and he went straight for the toys. But almost immediately he began going over to the same lady, who was at a table trying to talk to me about him, showing her toys and telling her about them. Nevertheless, it's hard to describe, but now that his language as in ability to form his own sentences with more and more content and closer to correct grammatical structure keeps improving, I am still not exactly sure, but I think I am starting to notice the other communicative aspects more. I guess I can see that a child who can use language the way he now regularly does would usually have more successful sustained conversational exchanges. However, he's telling us about stuff that fills no "need or want" for him other than that he apparently wants to tell us about it. I really think he wants to have a conversation sometimes but a) it's difficult for him to "get" how in some way or other. I can't remember whether the way it seems easier for him to ignore people *at times* when they are trying to get his attention is really different from when his clearly non-autistic brother had the same level of verbal reasoning and emotional maturity.
I think the big difference between my previous understanding of autism and what is now thought about the condition is the difference between being as if "locked inside himself," which my son is not and I imagine a much smaller percentage of kids diagnosed today are, if any ever really were; and just having less severe difficulties with "communication" generally that involve more than being able or unable to express ideas in verbal language? But if there really is a "requirement" for the repetitive, restricted stuff I don't see how he could "be" autistic. I don't see it in him in even in the mildest way, whereas I see the other things as pretty mild aside from the actual language delay.
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Theresa
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insegnante
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| Posted: Oct 11 2008 at 1:52pm | IP Logged
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Oh, I forgot to reread the posts before I came back to reply...
Taffy wrote:
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The biggest indicator, in my opinion, would be your son's ability and willingness to engage with you and those around him. Does he seek you for comfort? Does he seek others for comfort? Does he play with others? |
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Yes, yes and yes to those questions.
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| The other big thing to watch for is a loss of language. Does he say/use fewer words than 6 months ago? |
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Nope -- it was never a loss, but a stagnation in development between age 2 and 3. Even two-word phrases (other than readymade ones like "all done" and "what's that," etc.) just didn't take off till he was about or nearly 3. He did say hi-name/bye-name at about 2. Also although he used a number of words regularly by 2, he had his first big vocabulary explosion when he was almost 3.
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| Repetitive play isn't necessarily an indicator, same goes for all the other stereotypical behaviours associated with autism. |
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That's the part I remembered and just started out replying to when I wrote the last post
Quote:
The thing with autism is that it can often seem very mild when children are young. In our own case, it's becoming more obvious as our son gets older and his case has always been atypical. A good site to check out for help in figuring this out as well as for finding ways to help your child learn to talk is Communicating Partners. Another good thing to check into is apraxia and aphasia, both conditions do affect language development. Selective mutism might be something you want to google as well.
I hope that you can get to the bottom of this and find whatever help your son requires, if any. |
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I appreciate your input from experience. I can see what you're saying; it really only is as our son keeps using more elaborate sentences more often that I can start to see how he still may have at the least a "delay" in understanding how to use them for conversation.
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Theresa
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Taffy
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On thing you may want to check out is Semantic Pragmatic Disorder. From your brief description here it may be something to rule out...
Praying for you and your son, that you are able to find him the help that he needs. It can be so frustrating!
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Susan
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insegnante
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Thanks, Taffy. I read the link earlier and forget whether this mentioned those same things I keep thinking don't fit him about autistic conditions, but even if so, it otherwise sounds a whole lot like my son. And thanks for the prayers
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Theresa
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SimplyMom
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| Posted: Dec 18 2008 at 12:23pm | IP Logged
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I know I am really later here.
My daughter is severely autistic but it has nothing to do with relationships or attachment. It has to do with communication.
For example she will make eye contact, she doesn't pull away from hugs or touches. But she can not form a complete sentence unless she is really distressed. But there is no question that she is autistic, she fits all the other criteria to a T.
For Rachel autism is more about how her brain filters information and her control of her impulses and reactions. We all have filters on our inputs and outputs. For Rachel it is as though those filters are missing. For her life is like being in a room with 100s of radios, each on full blast and each tuned to a different channel and she is expected to attend to a specific one. While I might get frustrated waiting in line at the store and think "Wow, would that cashier please stop chatting and check people out faster" I wouldn't ever say anything, Rachel wouldn't be able to make that stop between the thinking and the doing.
So I don't think it is accurate to grab one part of the autistic definition (like eye contact or attachment/affection) and say that THIS is the thing that makes someone really autistic or not. But I do think that the autism "spectrum" is used to over everything from mildly hyper-focused and anti-social to severe classical autism. On one hand I am glad to see autism more recognized on the other it frustrates me because some people expect autism to be the same. So since they know a child with mild asepergers they assume Rachel's disabilities are the same.
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Darcee
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4Real Forums : Special Blessings
Topic: what really is autism or "autistic?"
