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kotshka
Phoenix
Joined: Jun 10, 2011
Age: 28
Posts: 533
Location: Prague
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 Posted: Tue Apr 17, 2012 8:34 am Post subject: The ongoing story of Rada (formerly Asperger or cl. autism) |
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I'm in the process of trying to get a 3-year-old boy in my preschool diagnosed. He is clearly on the spectrum but it's unclear where exactly. A psychologist is coming in tomorrow morning to observe him, but she can't be here for too long and will largely rely on what we teachers tell her. I've written a list of his behaviors and traits that indicate autism but I would like to recommend whether I think it's asperger syndrome or classic autism and at this point I'm really not sure. I'd appreciate any feedback. I'll include the full list of traits - he is Czech so some of the words are in Czech but I'll translate them in brackets for the people here.
Originally I thought he must have asperger syndrome since his cognitive function and speech seemed ok and he shows interest in the other children, but now I’m not so sure.
Indicates asperger syndrome: obsessions, desire to interact with other children, ability to speak (although speech and intonation are not normal)
Indicates classic autism: hyposensitivity, echoing (could indicate much lower function than we thought), possibly low cognitive function
Unsure of his cognitive function. He is able to learn things but only by memorization. He does not seem to understand the logic behind things. Maybe he would need to be formally tested rather than simply observed. Also unsure when he started to talk. For sure he didn’t speak much in the beginning of the school year, but I don’t know whether the same was true at home. Have to ask the parents.
The full list of traits:
-Doesn’t work with materials normally. Uses same materials over and over again, in his own way.
-dropping beads / dropping objects on floor
-dropping objects into holes
-banging with hands or banging objects against each other
-stacking (ie blocks, listening boxes, cylinders, etc.)
-rolling objects (marbles, cylinders, etc.)
-Poor auditory processing
-doesn’t always respond to name or other verbal interaction (often doesn’t seem to hear even when looking right at you)
-hears and repeats back instructions but doesn’t seem to actually understand them (echoing)
-likes listening to sound boxes but doesn’t recognize whether sounds match or not
-seems to be echoing most of his speech, always uses the same sentences and phrases – if asked a yes or no question such as “Mas hlad?” ("are you hungry?" - literally "do you have hunger?") he will answer “mam” or “nemam” ("I have" or "I don't have") rather than yes or no
-not bothered by very loud sounds
-General sensory issues
-doesn’t seem to feel pain or heat/cold unless extreme (will lie in the snow outside in winter without feeling cold)
-likes pushing, bumping, hitting – often runs and falls to the round intentionally, hard enough it would hurt a normal child
-odd body language, walks strangely, very poor motor skills and coordination
-“stimming” – drumming, rolling on floor/ground outside, rapid blinking, making noises with his mouth, flapping hands, hitting self gently, pulling lips
-likes to “cuddle” but this seems to be more stimming rather than a sign of affection
-won’t/can’t dress himself aside from a few very simple items (slippers, sometimes pants)
-extremely clumsy, drops objects a lot, unable to clean up after himself
-Need for routine
-gets upset by unexpected events
-if there are no piskoty (a type of biscuit similar to vanilla wafers which he has to eat every morning when he gets to school) he sometimes melts down and walks back and forth between the clock and the calendar, crying and repeating the date and time until he calms down
-if the daily schedule is unexpectedly altered (such as if we go outside at a different time, have a special event instead of circle, etc.) he often panics and either freezes up – stops responding and goes “into his own world” where he doesn’t seem to hear us – or melts down, screaming and crying
-Obsessions
-numbers (exceptional ability) including time, date
-name days (he still remembers them even though this obsession has passed)
-elevators (talks about them constantly and pretends various class materials are elevators)
-“kulicky” (marbles/balls)
-Social issues
-at the beginning of the year he showed no interest in other kids and didn’t speak much
-now he talks plenty (but mostly echoing) and shows interest in interacting with other children, but doesn’t know how and is not successful. However, he doesn’t seem to recognize whether the others accept him or not. His speech is also very monotone and sounds “odd”
-he doesn’t empathize with other children – for example he will throw sand on someone, then if they do it back to him he is shocked and upset, can’t understand why they would do it
-doesn’t seem to react well to facial expressions – if someone is angry or sad he will often smile back at them happily or ignore them
-he doesn’t understand context – for example he will see kids fighting, pushing and hitting, and mimic this behavior in order to be like them, not understanding that it is an expression of anger or that it is unpleasant for them
-doesn’t understand verbal explanations – “to se mi nelibi,” “stop/staci/dost,” “to se nedela,” ("i don't like that," "stop/enough," "we don't do that") etc. – will repeat them back but continue the action clearly not realizing he’s doing anything wrong
-Special abilities
-highly gifted with numbers
-learns English more quickly than any other child and seems to remember each word forever
-can learn anything through memorization, but doesn’t understand the logic behind it. For example he learned Roman numerals in just a few minutes but was unable to understand why if I = 1 and V = 5, VI = 6, etc. Can memorize incredible things with numbers but doesn’t actually do math (though he may seem to, like multiplication tables, he’s not doing any process, just reciting something he’s memorized)
-Need to ask the parents about his speech development – did he start talking at a normal age or was it delayed?
-Non-autistic behaviors
-sometimes makes eye contact with people he likes
-likes “sharing” – showing others that he has “kulicky” or pictures of an elevator – likes other kids to work with him (though mostly he doesn’t want them to touch the work, just be present) – very attached to certain people
-likes “cuddling” – but as mentioned above, this seems to be related to sensory issues – he doesn’t do it normally, but slams his body into others and rolls around in your lap while you’re sitting, etc.
Last edited by kotshka on Mon Apr 23, 2012 1:37 pm; edited 2 times in total |
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zette
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Posts: 576
Location: California
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| Posted: Tue Apr 17, 2012 9:16 am Post subject: |
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| In the US we are moving away from making a distinction between the two - soon both will just be considered mild autism spectrum disorder. Which dx will get him more services in your country? That is the one I'd recommend suggesting. I would give the psych your written description of the issues, not just verbal thoughts. |
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Wreck-Gar
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Joined: Jun 20, 2011
Posts: 941
Location: USA
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| Posted: Tue Apr 17, 2012 9:57 am Post subject: |
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| zette wrote: | | In the US we are moving away from making a distinction between the two - soon both will just be considered mild autism spectrum disorder. Which dx will get him more services in your country? That is the one I'd recommend suggesting. I would give the psych your written description of the issues, not just verbal thoughts. |
Yes, you can probably just put what you posted here in a word doc and print it for the doctor.
Like I always say these diagnoses are really nothing more than labels and for HFA vs Aspergers the differences are pretty much just splitting hairs anyway. The biggest diagnostic difference, which I'ms ure others here will not hesitate to point out, is that Aspergers is not supposed to have any speech delay at all. |
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MomofThree1975
Deinonychus
Joined: Mar 14, 2012
Posts: 367
Location: NYC
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| Posted: Tue Apr 17, 2012 11:42 am Post subject: |
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| zette wrote: | | Which dx will get him more services in your country? That is the one I'd recommend suggesting. I would give the psych your written description of the issues, not just verbal thoughts. |
THIS. |
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kotshka
Phoenix
Joined: Jun 10, 2011
Age: 28
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Location: Prague
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| Posted: Tue Apr 17, 2012 3:23 pm Post subject: |
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Yes, the reason I wrote the above list was to give to the psychologist - I copied it from the word doc that I sent to my boss in order to get further advice from this forum - however, we're not sure if the psychologist speaks English and no one has time to translate it into Czech (my Czech is very limited), so it might be necessary to discuss it with my boss present to translate.
Of course he will get more help with a classic autism diagnosis rather than asperger, but on the other hand his parents are really terrified of the diagnosis. If they find out he has something more severe than asperger syndrome, they may panic and pull him away from getting help entirely (they've already delayed the visit from the psychologist many times). So I'm not sure what would be better in terms of getting him actual help. He certainly needs it. Our school is a bilingual Montessori school where the kids are expected to be able to do most things for themselves and teacher assistance is limited. We've got 2 teachers for 25 kids at once and many of them have behavior problems, so we really can't afford to have someone with him every minute, which unfortunately is necessary as when he's left alone he pretty quickly destroys things or unwittingly starts trouble with the other children. Just in the past two days he's broken 5 glass objects (unable to carry them properly) and we just finally discovered a stash of "missing" class materials that he had dropped inside the radiator. He needs an assistant for sure, but we need a diagnosis before we can even think about trying to find him one, and the parents are so scared that they're really resisting it no matter how much we try to tell them that it can only help him, and them, and of course us at the school, if he is diagnosed. We've told them that a diagnosis doesn't change anything except to give them more options... But still they resist. |
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Wreck-Gar
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| Posted: Tue Apr 17, 2012 4:26 pm Post subject: |
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Ok thanks for your second post, it's clear to me what's going on now.
I don't really know what to tell you aside from what you have already done.
My son was unable to get any help in his preschool (this is when we were living in Japan) till we got the autism diagnosis. After that, he was assigned a teacher to work with him one-on-one.
Sounds like there could be some cultural stuff going on here...there may not be a lot of acceptance for ASD diagnoses where you are.
I say just keep doing what you are doing and trying to explain to the parents how it will help. |
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kotshka
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| Posted: Wed Apr 18, 2012 12:24 am Post subject: |
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I think there's just not a lot of acceptance for diagnoses in general. 20 years ago this country was still communist and anyone who wasn't able-bodied and able-minded was shut away in a home somewhere and not allowed to be a part of society. Younger people aren't really affected by this, but anyone who was an adolescent or adult during those years still has a hard time accepting anyone who is "different" out in public. Most of Prague is still not handicap-accessible and people in wheelchairs often end up homeless. Things are changing, but not quickly enough. I don't know if this is what's causing the problems with the parents, but it is likely at least a factor - both are about 40.
Anyway things are slowly getting better, and the psychologist who's coming today is from a non-profit organization to help people living with autism. The fact that this even exists is a good sign, and hopefully she will really know what she's doing. Most people who have met this boy insist that he "can't" be autistic despite that massive list of symptoms because he sometimes makes eye contact and doesn't mind being touched. They've seen Rain Man and maybe a documentary about severe autism and assume they know everything about it.
I can't really talk to the parents directly because they don't speak English and my Czech isn't good enough, but I do my best to explain things to my boss, who then passes on my thoughts to them. I shudder to think what would have happened to this boy if I hadn't been there to recognize what was going on and push for him to get help. My boss and colleagues were among the ones who were sure he couldn't possibly be autistic and were ready to blame the parents for his problems. Fortunately they are open-minded people and I was able to convince them I know what I'm talking about (though they don't know it's because I'm an aspie, don't want to spring that one on them when I've been working there so little time).
Well wish me luck, I'm on my way to work now and the psychologist will be there at 9 (it's nearly 6:30 here now). Here's hoping she speaks English! |
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Delphiki
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Joined: Apr 15, 2012
Age: 23
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Location: My own version of reality
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| Posted: Wed Apr 18, 2012 12:42 am Post subject: |
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| My mom helped get a child in her preschool diagnosed with aspergers. She was talking with someone she new who was observing him and they were saying that they were not going to mention the "A" word (autism). she was worried that the parents would freak out about hearing the word autism, similar to your reasoning. As of now (from the little I have heard) he is doing well and him mom is trying to make sure he gets the special needs care that will help him. |
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kotshka
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Age: 28
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| Posted: Wed Apr 18, 2012 11:18 am Post subject: |
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Well the good news is, the psychologist spoke English very well. She read the list I had made and was very impressed, and said I had a diagnosis right there on paper of Asperger syndrome. I told her I used to think that, but now I'm not so sure, and after observing him and talking to me and the other teachers, she agrees with me. Especially the echolalia is too severe a symptom for an asperger diagnosis, even if he does have some unusually high-functioning features for classic autism.
Unfortunately it seems we will have problems with the mother. As I feared, she immediately denied that her son could have any problem so serious as classic autism. She insisted that he's really not so different than the other kids and she doesn't think, based on how he acts at home, that there's anything wrong with him really. I can see the fear and denial coming from her having grown up under communism, where a boy like him would be put in an institution and chained to a bed, and we can't seem to make her realize and accept it's not like that anymore.
If we can't persuade the mother to follow up on this observation, there's nothing more we can do. It's on her to get him diagnosed, and we can't order any treatment for him without a diagnosis. We are a private preschool and we have no power in this situation. We can keep him busy and out of trouble while he's in school, but we don't have enough people to give him the attention and assistance he needs to properly develop. He needs an assistant. My boss is considering threatening to throw him out of the school because we "can't handle him" there, just to shock her into realizing that the situation is quite serious, but I'm trying to dissuade her from that. If the mother pulls him out of our school, there's no telling what will happen to him. It's pure luck that I happened to be at this school and recognized what was going on - anywhere else in this country he would be screwed.
I think we should try less to persuade the mother gently and instead switch to confronting her with the situation directly. If he gets the help he needs, he can do very well in life. I'm confident about that. But if he doesn't, he will have serious problems when he starts normal school. Either the school will realize what's wrong with him and either force the mother to diagnose him or else throw him out, or, far more likely, they will not understand what's going on and will treat him as a normal boy with a behavior problem. He will be in constant trouble, he will never develop, and as an adult he will be completely lost. She seems to think that if she ignores the problem, it will just fade away with time, but it will only get worse if we don't help him now... |
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DW_a_mom
Ignoring the To-Do List
Joined: Feb 23, 2008
Posts: 9301
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| Posted: Wed Apr 18, 2012 2:32 pm Post subject: |
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It is way too early to move onto aggressive tactics with the mother. You have to give her time! All the professionals I dealt with when I was trying to understand my son, they always phrased things gently, they know that is how you get through.
The only woman I can't stand from those days is the way who insisted something was WRONG with my son and with me. THAT WORD does not belong in the conversation, and seasoned professionals know it. They will talk about education differences, unique challenges, the ways they see your child struggle, etc., and how they would like to help you get answers so they can properly support your child, but they will not say anything is wrong with your child.
I think what you might want to do is help this mother understand that ASDs are differences, but they don't mean something is wrong with the child. They do mean the parent needs to see things differently, and the child will need support, but that isn't th.e end of the world. Get some books like All Cats Have Aspergers, lay the groundwork for her to slowly change her way of thinking.
_________________
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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kotshka
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Age: 28
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Location: Prague
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| Posted: Thu Apr 19, 2012 1:35 am Post subject: |
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1. The parents don't speak English. There are no books in Czech to help deal with this issue.
2. This isn't new. We've been telling the mother since October (very gently, in a friendly and encouraging way) that her son is more than "just a little different" and that we need her help us to get him some proper assistance. Though my boss doesn't know I'm an aspie, she trusts my expertise in this area and has passed on thoughts like "a diagnosis can't do him any harm, it can only give us more options" and "if he gets the help he needs now he will be just fine, but the sooner we start the better it will be for him," and "if we get some help it won't just be good for us and for him, but also for you" (she's admitted that she has a lot of trouble dealing with him at home). I even translated some literature into Czech myself with a friend's help (several hours of work) to demonstrate to her that his behavior is really not normal and that he really does need some more help. I'm positive no one said anything about there being something "wrong" with him - in fact, we've been extremely careful to use only positive, encouraging, gentle language, because she's clearly scared and our goal is to reduce her fear enough that she's willing to accept our help.
She's been in solid denial for six months now. It took that long just to get her to agree to let the psychologist come. The psychologist talked to her for a while (she was really great, very friendly, positive, knowledgeable, I was very pleased with her) and then came back to talk to the teachers. She said it's clear that he's autistic, but that it "doesn't look good" with the mother. She refuses to accept that anything is wrong and we can't move on to any next steps without her help. This is a really common problem in this country, where 20 years ago the boy would have been locked away if he had been diagnosed autistic and parents still carry this prejudice and fear. This psychologist came from a nonprofit organization of people who help those on the spectrum from young childhood all the way through adulthood, and her whole job is to go to schools, observe kids, and pass on recommendations to the parents. If this woman says the mother's reaction is bad news, then I think we have cause to worry.
I think it really is time to be more aggressive with the parents, but I'm afraid to do so. If the denial is that strong, she might just pull him out of our school and send him somewhere else where they will treat him as though he just has a behavior problem. I love this boy so much, it would be an absolute tragedy to lose him... |
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DW_a_mom
Ignoring the To-Do List
Joined: Feb 23, 2008
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| Posted: Thu Apr 19, 2012 10:47 pm Post subject: |
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Have you considered telling her that YOU are on the spectrum? I know it would be a huge risk for you, but you can also provide a fantastic role model on why these words are not the end of the world.
But, beyond that, there isn't much you can do. Parents will not see what they will not see, but the seeds you have planted WILL stay in the back of her mind, and some day in the future she will connect the dots and realize you were right. Just how long that will take ... who knows.
_________________
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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kotshka
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Age: 28
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| Posted: Fri Apr 20, 2012 12:28 am Post subject: |
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I've agonized over this idea ever since I took the job. In the beginning I was afraid that if I told anyone at work, they would either believe me and misunderstand what it means, thinking me unable to do my job, or not believe me and then I'd lose their trust as they'd think of me as a hypochondriac or hysteric. The second option seemed the more likely - I've learned to fake it well enough that many people don't believe me when I tell them. This is made more difficult by the fact that I don't have a diagnosis.
Now I've been working there 10 months and I think I've educated my boss and maybe coworkers enough that they would believe me. But now there is the problem that they've asked me many times how I know so much about autism and I've always just said it's "in my family" and I've dealt with autistic kids a lot in my life. If I tell them the truth now, they may feel I lied to them, and again I could lose their trust.
I have to think about it some more. I know that I might be able to help a lot more if the mother realized that a perfectly well-functioning adult like me, able to be responsible for 25 preschoolers for hours at a time without help, has the very condition she's so afraid of her son having. On the other hand, since I didn't get any diagnosis or help growing up, she might take that as a sign that she doesn't need to do anything and he'll turn out fine, even though his condition is significantly more severe than mine and if he doesn't get help he'll end up in trouble. |
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lapinmort
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Joined: Apr 11, 2012
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| Posted: Fri Apr 20, 2012 9:28 am Post subject: |
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| kotshka wrote: | I've agonized over this idea ever since I took the job. In the beginning I was afraid that if I told anyone at work, they would either believe me and misunderstand what it means, thinking me unable to do my job, or not believe me and then I'd lose their trust as they'd think of me as a hypochondriac or hysteric. The second option seemed the more likely - I've learned to fake it well enough that many people don't believe me when I tell them. This is made more difficult by the fact that I don't have a diagnosis.
Now I've been working there 10 months and I think I've educated my boss and maybe coworkers enough that they would believe me. But now there is the problem that they've asked me many times how I know so much about autism and I've always just said it's "in my family" and I've dealt with autistic kids a lot in my life. If I tell them the truth now, they may feel I lied to them, and again I could lose their trust.
I have to think about it some more. I know that I might be able to help a lot more if the mother realized that a perfectly well-functioning adult like me, able to be responsible for 25 preschoolers for hours at a time without help, has the very condition she's so afraid of her son having. On the other hand, since I didn't get any diagnosis or help growing up, she might take that as a sign that she doesn't need to do anything and he'll turn out fine, even though his condition is significantly more severe than mine and if he doesn't get help he'll end up in trouble. |
What about the child's father? Is he involved or not? If the wife is inflexible, the husband might be more willing to listen and convince her. This sure is a complicated situation.
I think your answer to your colleagues' questions was clever, appropriate, and not a lie. You did not disclose information you thought was none of their business, but at the same time you did not lie since technically you are part of your own family. A lie is when you provide false information in order to mislead other people.
And I think the reason why they ask in the first place is because they were impressed by your knowledge on the subject matter just as I was when I read your first posts, not because they were trying to pry an admission of autism out of you. That would be rude. |
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kotshka
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| Posted: Fri Apr 20, 2012 10:06 am Post subject: |
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Oh, I'm sure they never suspected autism in me. No one ever does with me. I'm a *very* good actress. Probably part of why I never got the help I needed as a kid. I'm too good at mimicry and no one ever believed there was anything wrong, even when I straight out asked for help. Anyway, when I arrived at the school the other people working there all believed that if someone is able to make eye contact, they can't possibly be autistic, so they certainly wouldn't have suspected me. (Yes, it was really that bad. They went so far as to claim that an autistic person is not capable of learning how to make eye contact.)
Actually I think they were asking me how I know so much not because they were impressed, but rather because previously they thought they knew what they were talking about and I contradicted most of what they thought was true. I think if I didn't have a good explanation, like that I had studied it or had a lot of experience, they would not have accepted my advice at all. It really shocked me the first time I told a coworker that I thought the boy was autistic and they looked at me with this condescending expression on their face and said "Oh, certainly not." It sounded so much like "Are you an idiot or something?" I knew I had to have some sort of credentials. Saying it's in my family seemed safe enough and I dodged the questions when they asked for more specifics. Finally at this point they have accepted my expertise, but I would feel nervous about telling them the whole truth after playing this half-truth game for so long...
The father is only involved in a minor way with the school. Anyway it seems his attitude is that he knows something is wrong with his son, but he thinks he can fix it himself and he doesn't want anyone else getting involved. So that doesn't help I'm afraid. |
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