The ongoing story of Rada (formerly Asperger or cl. autism)

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I agree with btbnnyr that it would be better to go with a diagnosis that the parents are accepting of, or least fearful of, and take it from there. Regardless of the label, what happens next has to be tailored to the needs of this particular child and you need the cooperation of his parents, whose fears and anxieties are understandable based on their own history of growing up under an oppressive regime.

I'm wondering whether it might be possible to approach a university locally or abroad to ask if students could assist by volunteering to translate books and other documents for the school and the parents?

Bases on your latest post, what I've been thinking is probably a long shot, but I'll post it anyway in case you do decide it might work.

First, I'll repeat that you haven't lied. You have effectively dodged revealing something very personal that you are not and never have been obligated to reveal. That sort of dodge is something people do and allow others to do; read any popular advice column and you'll see that is true.

What I've wondered is if you could have a conversation with your boss or someone you trust along these lines: "you know how I've noted that I have a family member who is autistic? Well, the part I've kept to myself is that I think that family member is me, and the reason I know so much about the condition is because I have done a lot of research trying to decide if that label applies to me. Yes, I've leaned to cope and overcome many of my challenges, but you have no idea how difficult it was for me growing up, and I really worry about this child who I see with all the challenges I had, and then some. Do you think it would help us with his mother if I shared my story?"

I'm 39 and I'm still not sure, and nobody else is either. I've never sought a formal diagnosis in later life. I was assessed at age 5 or 6, and it was decided that I was not autistic nor learning disabled (mind you, this was the 1970s, much different standards were being used & the science was not as developed). I was sent for assessment due to odd behaviours (making strange noises during class, banging head on wall at night for no apparent reason, atypical interests, stuff like that) and mainly auditory impairment of some sort that was not a deficit of hearing. Still have some difficulties processing speech. Lots of the stuff on your list I really relate to especially from when I was very young (example: "learns English more quickly than any other child and seems to remember each word forever" - based on my own experience, you perhaps, maybe, could see reading happen earlier, and be very exciting for your son when it does happen.)

I'm different, I have some features that are extraordinarily similar to those in the spectrum. But many core deficits that define it, seem to be missing. I identify as non-neurotypical, non-autistic. Perhaps something that isn't understood yet. There's always that possibility. In your case it could be something they do understand. Or not. They don't have all the answers, but they have some, that are apparently useful and productive for some people. And of course, maybe your son will be just fine.

I could've grown up better. Past grade 3 difficulties seemed to subside but became apparent once again by teen years, and lot of functionality problems in adult life. I have no idea what could've realistically been done better. I suppose, my parents could've tried harder to get help for me. But I have no idea if that would've been fruitful or not. I think my mom in particular did well to accept me while still maintaining boundaries. Grandparents helped alot - acceptance without boundaries, which was a role they could take, since I still had boundaries without them.

Thanks for all the advice guys. I am leaning towards telling my boss about my AS. But I would not say I "think" I have it. There is absolutely no question - I am textbook, start to finish. Showing uncertainty would reduce my credibility, I think. I have to convince her that I really know what I'm talking about 100%. I hope she won't ask if I have a diagnosis or not. Normally what I tell people is that I was not diagnosed as a child because during that time the idea that an academically successful girl could be autistic was considered a logical impossibility, so I never knew what was wrong or got any help (despite 14 years of therapy where I was repeatedly called a hypochondriac and misdiagnosed with things like depersonalization disorder) and my childhood was extremely difficult and painful. It was only as an adult that I found out what was going on with me, educated myself and received some help. After only a year of this help I was already able to live independently and now no one suspects there's anything particularly different about me - I'm just "a little odd" to most people. Usually if I tell the story this way, the diagnosis is assumed by the listener. The truth is, I know more about autism than most people who could diagnose me and am far more qualified to diagnose myself than any doctor, but most people only accept diagnosis from a person of authority with a diploma on the wall that says "I AM QUALIFIED TO DIAGNOSE."

As for this boy, I'm not qualified to diagnose him officially and all we can do at the school is recommend to the mother that she take him to be formally evaluated. The psychologist who visited us and observed him agreed with me 100% that he has classic autism, how high-functioning is hard to tell at this point because of his age and the uncertainty of his cognitive function because of how he speaks. There are high-functioning features but also low-functioning ones which need to be addressed. She also told the mother, gently of course, that the best thing to do is to get him diagnosed so we can get state assistance to get him formal help. Our school is a private Montessori school and we would never allow anyone in who would use negative reinforcement with him - we just need to be able to hire someone to stay with him all day, since we have only a couple of teachers and a lot of kids and he needs constant supervision. Right now we can't afford to hire another person, especially not just for one child. Either the mother would need to pay for it, or we'd need state help, which will not be available without a diagnosis.

Basically the mother is flat-out refusing to take him to get diagnosed at all. Actually I'm not sure she knows what asperger syndrome even is. She still suffers from the old communist mentality that if someone has a diagnosis of any disorder, they are defective and not valuable. She knows that her son is not defective, so she can't accept that he could need any diagnosis. What we're fighting now seems to be this mentality. But how do you persuade someone who has this mentality so deeply ingrained into their mind? No matter what we tell her about how we need to help him, how bright he is and how well he could do if only he has the proper help, and how badly things could go for him if he doesn't get proper assistance, she just says "Oh, maybe he's a little different than the other kids, but I don't see any problem." She says it with this terrible fear in her eyes. I want to make her understand that it will be okay, if only she trusts us and gets him the proper help, but I don't know how to do it. I've tried everything I can think of.

Edgewaters: I'm not the boy's mother, but his preschool teacher trying to persuade the parents to get him diagnosed so we can get some help with him in the class. He's destructive and aggressive and needs someone with him all the time, but we can't spare anyone. I also believe he has excellent potential for development, but needs 1-on-1 help for that, which we just can't afford to give him, so I'm trying to get the parents to diagnose him so we can get him an assistant. Thanks for your positive words anyway.

As for my opinion of him, it is quite high indeed. He is my favorite child out of the 25 in my class. His name (common enough in this country that I'm not worried about posting it online) is Radoslav, which literally means "celebration of joy." His nickname is Rada and he is absolutely amazing. As I mentioned above, he is able to memorize everything and remember it seemingly forever. I'm convinced that if he stays in our school, and I'm able to spend enough time with him, he'll be able to speak English as well as Czech by the time he starts first grade. And he's very particular about pronunciation. Lately he has taken to teaching the other children the words for colors, and when they mispronounce a letter (especially the r in red - the Czech r is a "flap" which sounds a bit different), he makes them repeat it until they either get it right or they get tired of him and walk away. His mother told us he punched his father in the nose for mispronouncing it!

There was one day which was a vacation day and he was the only boy in the school - just me and him for 8 hours. It was amazing. I taught him Roman numerals and a lot of English words. We explored magnets, which he had never encountered before, and spent an hour listening to the sound marbles make when they hit the carpet. He is obsessed with elevators and he grabbed one of the materials we have - a small box with a drawer in it - turned it on its side, and said it was an elevator. He then proceeded to move it up and down and list which floor it was at (always underground) and what was on that floor. I had to give him input for this - he wasn't able to produce all the descriptions himself, but when I asked "what floor is it on?" he could give me the number, and when I said "what's on that floor?" he would look around the room and find something and name it - this floor has cars, this floor has dogs, this floor is blue, etc. He went all the way down to floor -100!

He loves to roll around on the floor or the ground outside and the look of joy on his face when he does so is just amazing. He's really a very happy kid, usually smiling or laughing. The only problem we have, and the reason we need to get him an assistant, is the destruction and aggression. He's hyposensitive and loves falling, pushing, hitting, throwing, etc. He starts trouble with the other kids constantly, and is always breaking things. He just needs a 1-on-1.

As for his speech, I'm not worried about his ability to learn. I'm confident that he will manage at his own pace. He learns English so quickly, and clearly knows what the words mean as long as I translate them to Czech for him the first time he learns them. He frequently asks me "How do you say ___ in English?" and remembers the answer forever. Much of his speech is immediate echoing at this point. If asked "How are you?" he will just stare, but if asked "Are you good?" he will answer "I am good" or "I am not good" or sometimes even "I am bad." But he also produces his own sentences - they are memorized ones for sure and always the same, but he seems to know what they mean. He's always running up to people with a marble in his hand, shoving it in their face and saying "I have a marble!" or simply "I have green/blue/etc.!" with the color in English and the rest of the sentence in Czech. I'm sure his ability to speak will get better with time.

This boy is so incredible that I'd like to start a sort of blog about him. If it's okay with the others who've posted in this thread, maybe I'll change the title of it and just keep this as a log of his progress? Or should I start a new thread? I think some of it could be helpful to others, and it's really a beautiful story aside from the problems with the parents and aggression, which we will continue to work on.

Whoa, that's a superlong post, sorry! Hope some of you manage to get through it all.

OK, I know what you're talking about. Damn, that's difficult. Let me give you an idea how difficult. I think there was an aspect of this when I was growing up, particularly from my father, who would sometimes angrily state: "There's something wrong with you." As if, I had to fix it myself, and in a hurry, or else. He wasn't a very nice person, their marriage failed badly, and nobody in the family talks to him anymore, so his opinion is of course worth nothing and should be ignored, and yet ...

I think this might be part of the reason I don't seek a diagnosis. Here I am fully conscious of things, and yet, so deeply ingrained is the suggestion/mentality, I fear being officially proclaimed to be impaired in any way, even though I understand the mentality, and don't agree with it, and know there's nothing to worry about. The only reason I can be so candid right now is because I'm anonymous.

I'm trying to work up the nerve to talk to my doctor. He's tried. I had some employment difficulties some years ago, and he kept trying to ask if there was any sort of condition that might have anything to do with it. Here in Canada, there are financial and other benefits I could really use, and I'd be able to access these with his help. But. I just made up a story disagreeing with some of the policies at the workplace, which sounded quite reasonable and normal (but was a total lie). I couldn't help it.

That's how deep this mentality can run. Deep enough that to lie and claim everything is normal is involuntary.

Maybe, play directly on the fears of the mentality, like suggesting that with help, he has a shot at being a succesful, well-adjusted adult, but without help, it may be that everyone will be able to see he has problems when he's an adult. I honestly don't know.

The blockage is a fear. The fear might be impossible to remove, so it may be that you can't just reason the fear itself away, but maybe you can speak directly to the fear itself, and appeal to it. I'm no expert and just taking a shot in the dark here, so take that for what it's worth.

What about the father? Have you talked to him?

Well, the problem with this is that you cannot choose a diagnosis.

What if you 'backpedaled' a bit? Let's say, approach it from a little bit of a different angle? For example, tried to convince her to go get a state evaluation--not for autism--but for the 'co-morbid' issues. Particularly, the auditory processing and the sensory issues? Talk more about his strengths and weaknesses and how the school wants to help, but that you need further professional assistance.

Would it be possible to even tell her you suspect he is gifted in a couple of areas, and you'd like to further assist and develop those giftings, but you can't proceed well enough until you have a professional's further opinion, as well as assistance for the issues that are hindering his giftedness? I realize maybe you've tried some of that, and one evaluation already, and she is still not receptive, but thought I'd just throw it out there. (Sorry for all the crazy long sentences.)

I know that approach sounds sly, when you know full-well that the a government evaluator will probably come up with your same conclusion. However, all of the above is true as well. And if it is what she is willing to accept, then perhaps approach it tenderly in that way?

I like the idea too, of you sharing your own story. That could be really powerful. I wonder too if it could launch a possible negative effect: such as, you are trying to vicariously 'peg' my son with your own diagnosis.

Well, no easy answer, that's for sure. Best wishes and keep us posted.

Actually that's another potential roadblock. Awareness of ASD is not at the same standard here as it is further west. Certainly there are professionals who are qualified, experienced, and capable of diagnosing this boy properly, but the ones in the state system are horribly underpaid, overworked, and often inexperienced with problems such as this. It is still a common misconception in this country that those with autism "can't" ever make eye contact or seek out physical contact with other people. Since this boy is "cuddly" and looks you in the eye, everyone dismisses him right away. We could get lucky with a state evaluation, or we could wind up with an official recommendation that supports the mother's opinion, which would stop us dead in our tracks.

Really what we need is for the mother to take him to a private professional who is an expert in autism specifically, and we can't force her to do that.

I'm still considering whether to reveal my own autism. It seems more and more like the right thing to do, and the best chance we have to get the parents over their denial, even if there is a risk of damaging my own reputation. But so far all my communication with the mother is via my boss, since my Czech is so very limited, and it seems like something I should tell her myself. I'm considering writing a letter to the mother, in Czech (with a friend to help me translate), explaining my situation and my opinion of her son. For sure I would praise his gifts, explain how my lack of a diagnosis in childhood really held me back, and show her what a huge difference it makes to get proper help, as I am now a fully independent adult with very few problems resulting from my AS.

On the other hand, I have a new fear. If the parents are so severely biased against autism, revealing to them that I am autistic might cause them to judge me unfit to care for their son. They could even spread this sentiment to other parents - it's none of their business if I have asperger syndrome or not, but if parents start hearing there is a "disabled" (in their eyes) person in charge of the kids, often all by myself, they might lose confidence in the school as a whole, and my boss for employing me.

It might be paranoia, but on the other hand if the mentality is this strong, it is a real risk. I guess I will have to do some more thinking.

You aren't being paranoid, but I also can't tell you how founded the fear is. I think it would help if you discussed all those concerns with someone you trust at the school, who knows the mother, too. There is a lot to weigh here, and much of that involves making an intuitive call about the mother. No one on a message board can help you with that, really.

But I do want to say, as a mother, that I think it is amazing how much you care about this child, and how important teachers like you have been to me in raising my kids. It makes so much difference, this level of care and attention. No matter how this one situation turns out, do not ever forget that, or let life turn you cynical.

I meant that the OP should suggest to the parents that their child may have AS instead of autism, so the parents may be willing to take their child to a clinician, who may diagnose the child with AS or autism, I dunno which. If the OP suggests autism to the parents, then the parents may be so afraid of the idea of autism that they may avoid getting the child assessed for anything evar, for fear that the result will be autism.

But now it sounds like the parents cannot accept any diagnosis, because they are afraid of all suggestions of disorders, and I have no suggestion for what to do about that.

Yes, I appreciate the suggestion, but so far it really doesn't seem to matter what type of diagnosis we suggest - any diagnosis is associated with him being defective, so they won't accept it.

Today was a hard day. I have managed to establish using drawings and conversation with him that he is able to identify what facial expressions represent. Smiling is happy, tears are sad, etc. I made a comic for him showing a boy pushing another, the victim being sad, the pusher apologizing, etc. We talked through it and he was able to accurately describe what was happening in each panel and even answer questions like "why is the boy sad?" - "Because he pushed him." He was laughing as we discussed it. Then I asked him what it means and he didn't answer - tried to be more specific, "Is it good to push?" "No, it's bad to push!" He was very happy about this conversation.

He was more aggressive today than I've ever seen him. I literally had to hold him by the arms for most of the day. Any second I wasn't holding him he would run up to another child and shove them, hit them, squeeze them, knock them to the ground - kids were screaming and crying. He was really hurting them. Each time I grabbed him and asked him to look at the other child. "Is she happy?" "No! She is sad!" "Why is she sad?" "Because I pushed her!" (laughter) "Do you want her to be sad?" "I don't want her to be sad!" "So will you push her?" "I will not push her!" (more laughter) Then if I let him go he ran straight back over to attack again. I also tried "Do you like being sad?" "I don't like being sad!" but he clearly didn't make the connection.

He seemed to really enjoy these conversations. He also liked making people say "NO!" by doing things he's not allowed to do. He had a great time today. Start to finish it was just a game - he pushes the buttons and gets the reactions he expects. He clearly understands the cause and effect, but he doesn't understand that what he's doing is not okay, and there doesn't seem to be any way to reach him.

My boss promised to call the psychologist and try again to talk to the parents, but until we can get proper help I have to find a way to deal with this. The other kids were picking up on his aggression and fighting each other, but I couldn't stop them because I had to spend all my energy holding Rada still. I found that if I rub his back or make "tickling" motions (he's far too hyposensitive to be ticklish) the stimulation was enough to keep him calm, but it required constant focus on my part. I wasn't able to do my job properly and everyone suffered.

My colleague told me she recently visited another Montessori school where they have an autistic boy whose behavior is just like Rada's, but he has an assistant. He is able to function in the class just like any other child and the teachers are able to do their jobs. If only we could get someone for him! He can be such a joy but it's just not possible to function this way...

Does anyone have any suggestions about how to make him understand that what he's doing is wrong? I'm sure he doesn't mean any harm - he enjoys being pushed, so why would he ever imagine that it would hurt someone else? We can't even teach him by making him feel what he's doing to others. Words certainly don't work, and the pictures aren't working either... And the echolalia is getting worse. For a lot of today he was unable to even answer simple questions, even about numbers, and simply parroted back every word that was said to him. Something started getting worse with him last week and it's rapidly becoming more than we can handle.

the bold ismy son exactly...if you find a solution please post it here! I am very interested...

Today has been difficult so far as well. (I'm on my break, another teacher has the kids for their rest time.) I met with my boss this morning and she told me she had called the psychologist and described what was happening and what we were trying to do about it. She said that it's good what we're doing with the pictures, but what's missing is an example of how he *should* act. He can copy what he sees, whether it's good or bad, but so far all he seems to be seeing is the bad stuff.

And we do have a really unruly group. Lots of hyperactivity, aggressive kids. And most of the "good" behavior is just them talking to each other, which he's really not able to do. He can't produce his own conversations yet. He has certain words, phrases, sentences, linked to certain events and situations, and he uses them over and over again, but he can't engage in creative conversation with anyone or answer open-ended questions.

However, he is very good at copying what we say and linking it to the correct situation (which is why it took us so long to notice the echolalia). He says good morning when he comes to school and goodbye when he leaves. When he wants piskoty (a sort of cookie they can have a couple of per day to grind up and eat - Montessori work materials) he knows exactly how to ask for them, in both Czech and English. When we play with magnets, he repeats the sentences I taught him - when he puts together opposite poles and they attract, he says "they are friends!" and when they are the same and repel, he says "they are not friends!" Just yesterday he saw that a boy needed peanuts (more Montessori materials - learning to crack nuts) so he went to the proper drawer, took out exactly the right number of nuts, and gave them to the boy ("tady mas FIVE NUTS" / mix of English and Czech for "here you have 5 nuts") and then said "Reknes dekuju?" ("Do you say thank you?")

So my boss had the idea that we can teach him to talk to the other kids, sentence by sentence. We have to hold on to him constantly now or he attacks the others, so she suggesed we start "Rada training" where we walk him around, touch the other children gently, then ask them a question like "how are you?" It's a way for him to get attention from and interact with the other kids without being aggressive.

Well, we tried it outside today. I think it will work, but very slowly. He still wants to push and shove and hit, largely, I'm sure, because the other kids are all doing it to each other already. The difference is, they know it is wrong and understand punishment, consequences, and how they're making the others feel. They also hold back because they're afraid of getting hurt themselves - but Rada doesn't get hurt and loves being pushed around, so he doesn't hold back at all and he can do a lot of damage. He will touch gently and say "this is nice" then hit and say "this is not nice" and laugh. Verbal explanations are still useless.

I had him by the hand and asked him "Jak se mas?" (how are you) He didn't answer, of course. I altered the question to "Mas se dobre?" (are you fine?) and he immediately answered "mam se dobre" (I am fine.) Just to check, I asked "mas se spatne?" (are you feeling bad?) and he answered "NEmam se spatne!" (I am NOT feeling bad!) Then I asked him how one of the other children was and he just repeated my exact words back to me, so I told him "Say to (name): (Name), how are you?" He happily did so and they answered that they were fine. We did this with many of the other kids, but quickly ran into a problem: most of them are already sick of him and didn't want to answer the question. Another problem is that he doesn't get close enough, talk loud enough, or get their attention, so they don't hear it. So in order to force them to pay attention, he went straight back to hitting.

As long as he was occupied with asking the others questions (I also taught him "do you like cats/dogs/trees?"), he wasn't being aggressive, but he would only ask the questions if I prompted him, so it still required constant attention both to keep him talking and to stop him in case he started hitting again. At the very end of our outside time he finally started asking "jak se mas?" on his own, but he only tried a couple of times before he started hitting again. I don't know if it's just because it's easier to get attention by hitting, or if he's just not used to asking questions, or what, but we still need to hold him constantly. We let him go once and tried to see if the kids could resolve it themselves, but we quickly realized what a bad idea that was when a fist fight broke out between him and a 3-year-old girl and we had to tear them off each other, him laughing and her crying.

So we'll keep trying this, because we don't know what else to do. But it's really getting impossible for us to teach the whole class when we have to be with him constantly. I'm starting to see that my boss may need to threaten to throw him out of the school if the parents don't do something to help. What else can we do?

I think that this little boy would be better off in a different school/kindergarten. One with a much higher teacher:pupil ratio and which provides the routine and strucure which he probably craves.

Montessori schools, if they follow the principles of their founder at any rate, don't seem to be particularly suitable for autistic children who require support and guidance, structure and predictability. He is in a large group of children of varying ages, and he is o eof the youngest, and there is often only one adult present - that's what I understand from your previous posts at any rate.

When my son was a similar age he was having real problems in his nursery, which although it had much higher staff:ratios than seems to be required where you are, was open p,an which effectively meant that he was part of a larger group. The environment was busy,noisy, unpredictable, seemingly, to him, unstructured, and he was very distressed.

I took him out of that nursery and he went instead to the nursery of a private school, which was smaller, with less than 30 childre, split into groups of no more than 9 always with one teacher and the support for part of the day of another adult. The day was clearly structured so my son knew what he would be doing, when, where and with whom. He loved it, settled in right away and thrived in that environment.

The school you are working at would have been nightmarish for my son, even with a one-to-one aide, and if I were that boy's mother I would be looking for a different school or a childminder.

I know you care very much and are doing your best for him, but I just think it's the school which is wrong for this child.

I only now see your most recent post, and it reinforces my belief that this child is in the wrong environment.

He needs a quiet, calm environment, with less hustle and bustle, fewer children and more adults. It may be that the best thing that you and your boss can do is to discuss with the parents what options are available and what an ideal situation would be like.

Has the mother come to the school to observe her son for a few hours, ideally able to watch when he doesn't know she is there? I know that was a big eye opener for me. Could the director require her to be the 1:1 aid if she won't go for help?