Autism and Asperger's

Discussion in 'General Parenting' started by serenityntn, Oct 4, 2008.

  1. serenityntn

    serenityntn Guest

    Hi my name is Deb and I'm a newbie here again. I first found this site nine years ago when my son was first diagnosis with ADHD and I seem to keep finding my way back here. We live in TN and he has just recently went for some testing to see if he has autism or asperger's at the children's hospital in Nashville. I don't really know that much about these conditions and was hoping to get some info. I will be making out my sig and profile but I thought I would go ahead and post my question first. Any help that I can get will be very much appreciated.
  2. house of cards

    house of cards New Member

    I just wanted to say hi, and welcome you back. I know there are others that will be able to steer you in the right direction. Weekends can be slow, be sure to check back by Monday.
  3. Marguerite

    Marguerite Active Member

    Welcome back. It's difficult to answer your query about autism and Asperger's without knowing specifically what you want to know. I can tell you a little about our experiences though.

    For our boys, the diagnosis of ADHD either came well before, or was given at the same time. Some people now think that ADHD is also part of the autism spectrum.

    Autism used to be seen as a devastating diagnosis, one in which the children could never feel nay love or other emotion, could never connect with anyone and could never learn. This is just so far wrong, it's incredible. Our kids CAN learn, often very well. But they often need to learn in a different way. They say you have to learn to crawl before you can walk - not necessarily, with our kids.

    In my experience - the kids themselves seem to instinctively know what they need and will go after it with a single-minded ruthlessness. But they DO feel emotion, often very keenly. We don't always recognise their emotional responses though, because they don't always show their emotions in ways we recognise.

    They can be very smart, often more than you realise. Like an iceberg - the vast bulk is beneath the surface. There can be huge issues with things like sensory integration, Obsessive Compulsive Disorder (OCD), difficulty changing tasks, special interest areas which absorb them totally. These interests CAN change.

    To get a bit of an idea, go to and look for their online Pervasive Developmental Disorder (PDD) questionnaire. It's not officially diagnostic but it can give you some clear ideas of a lot of the characteristics you find in autism. Sometimes what they do may seem mindless or irrational - it never is. There is always a good reason (that makes sense to them) for what they choose to do and how they choose to do it.

    They have some wonderful qualities - loving, loyal, honest, law-abiding (in their own way). We often misunderstand and see some of their behaviour as rude, insolent, defiant - when it's not intended that way at all. They do tend to display the behaviour that is modelled for them by others; so if you parent your children by control, by using sternness and strictness, then your autistic or Aspie child is likely to talk to you and his teachers in exactly the same way. They do not cope well with sudden change and often need to be carefully prepared for it.

    Anything else - please ask.

  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Marg did it again. I never know how to define autism/Aspergers. I even sent my son to an autism specialist to explain his differences to him. I didn't know how to do it. I CAN tell you that Autism Spectrum Disorders (ASD) is one of the most hopeful diagnoses a child can have (if one calls ANY diagnosis. hopeful). These kids simply WILL improve if they get the right interventions. Some will improve enough to live typical lives, even though Autism Spectrum Disorders (ASD) doesn't go away. To me, a woman with bipolar, I think my son has been able to adapt faster than I did to his disability. And I need medications; he doesn't. Not trying to say "this diagnosis. is better than THAT diagnosis.), but Autism Spectrum Disorders (ASD), a neurological disorder, can improve. Most psychiatric disorders pretty much stay the same. If I went off my medications, I would be the same as I was forty years ago :< Lucas has improved for good and will continue to do so.
    in my opinion, Autism Spectrum Disorders (ASD) kids and adults are both amusing and wonderful. The special qualities that Marg outlined make them good people who just may need a little more help in life. But I would happily adopt three more spectrum kids (if I wasn't an old fart) :)
  5. serenityntn

    serenityntn Guest

    I guess I should've gave more information about my son. He was diagnosis with ADHD when he was 4 and has been on more different medications for it that I can remember. Currently he is taking 50 mg of Vyvanse in the mornings and it's working pretty good. After a few years of school they wanted to say that he is MR but I refused to let them so now he's considered to be Learning Disability (LD). He was delayed in sitting up alone, crawling, standing, walking, and speech. He started speech therapy and occupational therapy when he was 3. They gave up on him in Occupational Therapist (OT) a couple of years ago even though he has several difficulties in this area. They recently quit with the ST saying there was nothing else they could do which he is doing well with his speech although he still talks like a child much younger. The last few years has been a constant battle with the school system. The Special Education program in our county is not very good to say the least. It seems they don't even want to try to find the right way to teach him. Last year they actually put him into a CDC class which the teacher told me right from the start he didn't need to be in. Currently he is in a behavior modification class. They put him in that class when they realized they were wrong with the CDC. At the end of the school year last year things were extremely bad. He had gotten so emotional. He felt that nobody liked him and the people at school didn't even want to bother with him which I felt that way too. One day he went to school and said everyone would be happier if he was dead which of course brought in the crisis team and children protective services. They accused me of not being able to take care of him and made a big deal of my depression and diabetes. They gave me a choice, either let him go stay with his father for the summer or they would put him in an institution. Of course I chose for him to go to his father's with me having visitation. His father has never really spent much time with him since our divorce in 1999. On the average he only spent 2 days out of a month with him. I was totally devastated. I don't have any other family besides my son but my friends were a Godsend and helped me through it. Through the summer I went through psychological testing and had other meetings with Children Services. By the end of the summer they even admitted that they blew things way out of proportion. Looking back I realize that in a way it was a good thing because I didn't realize it but I desperately needed the break and of course his father needed to spend more time with him. He came home to me a couple of weeks before school started. He is doing alot better now especially with his medications. I used to have a terrible time getting him to take them but not anymore. The school has been wanting me to take him for more testing for awhile now because they felt there was more going on with him besides the ADHD and Learning Disability (LD) so I took him to Vanderbilt. The results are not in yet but I do know they are leaning towards the autism or asperger's diagnosis. I wish other people could see what an amazing child he is. In some ways he is so smart. If it's something he's interested in he can tell you everything about it. He's got a great memory and an imagination that is out of this world. He likes to make up movies and says he would like to be a director. He does have some behavior issues but nothing violent and he loves everybody. I do know that one of the reasons that they think he might be autistic is because he's always repeating things. It seems like he tells me that he loves me every few minutes sometimes. Well that's about all I can think of right now. I didn't realize until I got started how long this would be but I hope that it gives everyone a better idea about my son.
  6. Marguerite

    Marguerite Active Member

    The repetition - that sounds like echolalia. It will pass, it is probably because he was language-delayed. It is partly Obsessive Compulsive Disorder (OCD) but I feel mostly practising his speech. We went through this a lot with difficult child 3.

    And think about it - if your son is repeating chunks of text or the same phrases, HE knows what he needs to do to learn and is actively doing it. he also is smart enough to remember, and probably remember long strings of sounds.

    To boost your confidence and recognise that you are right, autistic kids and Aspies ARE wonderful people, read anything you can find by Tony Attwood. He lifts my spirits.

    From what we've been told in Australia, you can have high-functioning autism rather than Asperger's if you had a HISTORY of language delay. Once the child catches up in the language department, this DOES NOT mean he is no longer autistic (unlike what a school counsellor said to us once). However, other authorities distinguish Asperger's as high-functioning autism.

    It's tricky - both labels are on the autism spectrum. In our family we refer to autism and label three of our four kids.

    I see your son as a label of "emotionally disturbed". Who gave him that label? It would be so easy to judge almost all autistic kids that way and often wrongly, simply because if you don't understand the child or know about the autism, it CAN look like emotional disturbance. The behaviour can seem very bizarre - only to the child, it generally is not.

    The world can be a very confusing place to a child on the spectrum. But it is in their nature to try to find answers for the questions they have. They may not know to ask you; instead, they'll try and work things out for themselves. For example, difficult child 3 was told at school, "It is a school rule - you must not hit other children."
    But his experience told him otherwise - other kids would push and shove and hit, all the time it seemed. And they often would hit him. However, if he hit back, he was in trouble. What he wasn't aware of, was the pushing and shoving was happening when the teachers weren't looking. He didn't know and was often hitting back when the teachers were around. Also, because he was "weird", the other kids would report that he had hit even if they wouldn't report other kids. This sent the first mixed message to difficult child 3 - he had different rules to others.
    Over time with the hitting continuing, difficult child 3 constantly being hounded to not hit back, he learned to not hit back but he also learned other bad rules. We didn't know, because it was all inside his head. But one day at his new school (he was there for one term) a kid jostled him and said roughly, "Get out of my way, you weirdo!"
    difficult child 3 stood there and said to the kid, "Well, come on. Hit me."
    The other kid thought difficult child 3 was trying to start a fight and, to his credit, fetched a teacher. The teacher happened to be the school principal and he recognised the problem - difficult child 3 had been called names and to his mind, this was the first step which always led to the next step - hit difficult child 3. He just wanted it over and done with, he hated the anticipation.

    We've helped difficult child 3 re-learn the rules here. He's older, he's more mature socially, he now understands that he has rights as well as responsibilities. He also is less fearful because he knows there are other ways to respond, more appropriate ways.

    What is your son like at reading? And my other question from before - how flexible is he? I don't know why but increasingly I'm hearing of high-functioning autistic kids who are also hypermobile. It is a separate physical problem to watch for, it does severely impact their ability to manage handwriting tasks so you do need to watch out for it.

    difficult child 3 likes to watch DVDs with subtitles on. He has good hearing, but his understanding is better when he can also read the text. His vocabulary is now in the superior range, after starting school still not verbal. He used to have most of a movie script memorised, even when he was otherwise non-verbal. This was an amazing mental feat, when you think about it. These memory chunks became the basis of his developing language; he used the phrases as his earlier sentences.

    Language and speech are different - a parrot can have speech but unless they use the words to communicate (to send an intentional message to another individual) then it is not language. A child can have an absence of speech, as in a young friend of ours who was brain-damaged after an accident. But that child can communicate by typing on a keyboard, and so despite being non-verbal, he DOES have language.
    difficult child 3 had language deficits but could recite movie texts and songs, verbatim. He had speech. He did not have language.

    And he's caught up now, although a speech path assessment which shows absolutely no delays now, does show wide variations in language use capability (from low normal, to superior).

    With your son, is his father a bit more on board now? It's good that he got him used to taking medications.

    With difficult child 3 we had a GP in our town who I came to dislike intensely, and to also feel was not a good doctor. A nasty piece of work, in my opinion. But he did one really good thing - he taught difficult child 3 how to cooperate with a medical examination.

    Our kids are capable of learning, but they often need to be taught a different way. Often the child is the best expert himself on how best he can learn. The child is the most important member of his learning team. You are the next.

    We found that difficult child 3 did not learn anything of substance while in mainstream. Everything he learned, he learned at home. He began that learning the moment he was born. We have used every opportunity, every method we could, to give him access to learning and educational material. we have posters on the wall, some of which I made myself.

    The work can be intense but the rewards are amazing. We've also found that love and support are taking us the furthest distance. "Explosive Child" is the best thing I've found to guide us.

    When your son says he loves you, let him know you love him. Yes, it's probably often inappropriate but he's still very young to teach him what is appropriate.

  7. Lillyth

    Lillyth New Member


    Where did you find that info about ADHD possibly being part of the autism spectrum? (And, oh man, if that's true, our SDs will SURE have an outflux of cash flow on that one!)

    The reason I ask, is that one PsychoEd Assessor I talked to told me that typically children with ADD DO NOT also have Asperger's. Yet, I read an abstract recently (posted on Stanford's autism site) on just this subject. According to the Department of Child and Adolescent Psychiatry, Goteborg University, Sweden, essentially 1/3 of kids with ADD are on the autism spectrum & vice versa. (If you want to get technical, 38% of children with Autism Spectrum Disorders (ASD) also had ADD, and 30% of children with ADD were also on the autism spectrum - but I think it boils down to abut a 1/3 comorbid rate.)

    I think it would certainly make sense if ADD was a different manifestation of the autism spectrum, and I would love to have some data to share with other folks (like maybe the SD).

    Thanks a ton!

    Oh, and welcome (back) serenityntn!
  8. Lillyth

    Lillyth New Member

    Same as what we're told here in the states. Asperger's can ONLY be considered if there was no language delay, otherwise it is straight up autism or High-Functioning Autism (HFA).
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Here if there is a speech delay it is Pervasive Developmental Disorder (PDD)-not otherwise specified. But that can be high functioning. He sounds very much like a spectrum kid. That "he's so smart" in some areas and "he's clueless" in others is so typical as is the school's interest in labeling the child MR, when he likely just needs a different kind of testing. To me it sounds way beyond ADHD, even if ADHD IS on the spectrum. It sounds like Autism Spectrum Disorders (ASD) to me. Course I'm just the mom of an ASDer.
  10. SearchingForRainbows

    SearchingForRainbows Active Member

    Great post!!! It is so confusing. I always thought that if a child had a speech/language delay, than the diagnosis is Autism. difficult child 2 "babbled" non stop as a toddler and while he had speech - echolalia (SP?), he had virtually no language skills. difficult child 2 didn't communicate through language until he turned 4. Even then, he still used lots of echolalia and his language skills consisted mostly of two or three words pronounced incorrectly.

    Like others, I always thought that if a child had no language skills early on, then he/she is Autistic. Since then, difficult child 2's providers have told me that I'm wrong - difficult child 2 is clearly an "Aspie." per his doctors. (He is high functioning intellectually but lacks any sort of "common sense," and is low functioning socially/emotionally).

    difficult child 2 has been given lots of different diags over the years. At two he was labeled Autistic. Later on he had Pervasive Developmental Disorder (PDD). After that, he was given the label of global developmental delay. Finally, last year, we were told he is an Aspie. (And, most recently, difficult child 2 has also been diagnosed with moderate pragmatic language disorder.) We were further told that he missed the diag for mild to moderate Autism by .5 point. I find all of this so confusing!!!

    Also, although I don't know where to point you in the literature, I've been told many, many times by different providers that ADD and ADHD are at one end of the Autism Spectrum Disorders (ASD) spectrum while Autism is at the other end. In fact, at first, we thought both difficult child 1 and difficult child 2 had ADHD. Although neither one of my difficult children were diagnosed with ADHD, at times, throughout their development, they both appeared to have it. To me, difficult child 2 still looks like he has ADHD.

    As far as I'm concerned, as long as our difficult children get the services they need, then the label isn't as important. However, at least where I live, without the label of Autism, even though Aspberger's is a form of Autism, it is very difficult to get appropriate services. And, when our providers can't agree on the correct diagnosis, how are we supposed to convince our SDs to provide services we know our kids need? WFEN
  11. nvts

    nvts Active Member

    WFEN! The way I explain it to teachers etc. is think of my kids as Ice Cream Sundaes.

    Generically, there's ice cream, syrups, fruit and sprinkles.

    Autistically within the spectrum depends on what is on the sundae.

    What type of ice cream? Which syrup? Chocolate, caramel, butterscotch - a combo of 2 or 3 of them? Sprinkles? Rainbow or chocolate? Friut? Bananas, cherries, strawberries? Whipped cream? I am of the personal belief that nuts are ALWAYS involved with our kids ;)!

    Depending on the mix, you get a rough idea as to where on the spectrum they reside. Then the best part happens - you go nuts trying to get the diagnosis and as soon as you do, the little bugger either does great on medications, matures or learns a new skill that moves them further up the spectrum thus potentially altering the diagnosis.!

    This is tons of fun to deal with! But at least you can know that in their hearts, they're good people who just basically want to be happy.

  12. SearchingForRainbows

    SearchingForRainbows Active Member


    I LOVE your explanation!!! I especially like the part about the "nuts", lol!!! I hope you don't mind, I think I'm going to "borrow" your creative way of explaining Autism Spectrum Disorders (ASD) in the future.

    Thanks for posting it!!! And, thanks for the laugh!!! WFEN
  13. serenityntn

    serenityntn Guest

    I'm still waiting on the test results right now but I do feel a little bit more prepared for them now. It's all still incredibly confusing but I expected that. As for some of the questions that were asked about my difficult child, he was language delayed. I'd say by the time he entered Kingergarten he had 15 to 20 word vocabulary and this was after being in pre-K for three years. This was also about the time that he was diagnosis with ADHD. Looking back on the meltdowns he had then, I think alot of them had to do with not being able to communicate with others. He still gets upset when someone doesn't understand him.

    He's not able to read very well but he does try. He's always asking me what a word is or how to spell something. He is currently in the 6th grade but they say he's at a 3rd grade level.

    Marguerite, when I was reading about your son having the trouble in school with kids hitting him, I recalled how my son went through similar circumstances. He was coming home telling me he got in trouble for something he did or said and when I asked him why he did it, it was because another student was harassing him but the teacher wasn't getting the whole story. She only caught him. Last year I got a phone call one day telling me that he had been suspended and the police were bringing him home. The reason being that they had heard him telling another student that he would kill him. I was shocked and I couldn't imagine him doing that. When he got home and I sat down with him to talk about it, he couldn't understand why he got in so much trouble. I asked him if he had said that and he told me he did but he didn't mean it. He said that him and the other student were playing a game in which they were talking about what kind of funeral and all that they were going to have and my son told the other boy that he would kill him to help him out with his plans. Now I know this was not a good game to be playing but my son didn't realize how it sounded to others. To him, he was just using him imagination. This is when children services were brought in. This and a questionaire they had me and his teacher fill out is what got him the label as emotionally disturbed. He is in counseling and they agree there are some things he needs help with but they don't really see him as being disturbed.

    I did get a phone call from his behavior modification teacher yesterday telling me that since he's doing so well right now that they are going to start sending him into the resource class and hopefully later on let him have lunch and p.e. with the mainstream students. I told her it was interesting that she called because I had planned on calling her and asking if they could do that very thing. I had found out a few days ago that he's the only student in the behavior class so of course he's doing well. He has their undivided attention. They are not going to know whether it's working or not until he has the interaction with other kids.

    I just hope I get the results of his testing soon so maybe I'll have a better idea of how to proceed. Thanks for the advise.
  14. Lillyth

    Lillyth New Member

    I've always said that all ADD was was being brilliant and unable to focus on things you don't care about - and I guess that's just like being an Aspie, too.

    I agree about the labels too. I don't care if you call him a fricking crocodile, as long as he gets the services he needs...;)
  15. Marguerite

    Marguerite Active Member

    Serenity, thanks for the clarification.

    I am saddened and concerned by what you shared. I agree, the emotionally disturbed label sounds inappropriate. As I suspected, it was a combination of him misunderstanding what was appropriate behaviour (a common occurrence in autism) and other people jumping to panicky conclusions and not LISTENING to what is really going on in his head.

    You DO seem to be listening to him. However, I think you have been misled by the "experts" in his world, especially the teachers. I strongly suspect your son is far more intelligent than credited; his language delay has been getting in the way but he is catching up fast, as least as far as language is concerned. It's called language DELAY, because they CAN catch up and years later you might never know. For example, I've often mentioned this here as an example of how even those who are supposed to really understand our kids can get it badly wrong - difficult child 3 was in Grade 3 or 4 when his school counsellor said to me, "It's wonderful to see how well difficult child 3 is doing now. He's talking normally, he's interacting with other kids..." (as she said this, he was walking around the edge of the playground, alone, his feet following the lines painted on the asphalt to make our basketball court) " must be so pleased that he's no longer autistic."

    Her statement horrified me - not only was it delivered in a way to make it difficult for me to challenge (she delivered it as a statement of finality, I would have to be the most negative person in the world to claim she got it wrong) but for someone supposedly trained to understand special needs kids, to have made such a mistake - and to also not see how socially isolated he was even in the midst of a crowded school playground, just too my breath away.

    At the risk of seeming very negative, I DID correct her. I pointed out that he was not exactly playing with anyone, that if there were no children anywhere he would still be doing what he was doing that minute. His activity was not dependent on other children's presence, which is what I understand group play to require. I also pointed out tat HISTORY of language delay was one important criterion for a diagnosis of autism; a later acquisition of language never negated the diagnosis because it is a diagnosis for life. Autism is a different way of brain functioning. Not necessarily worse or better; just different. because we live in a world with a spectrum of differences, we can be glad that somewhere in that spectrum is the possibility that our child will find the niche into which he/she fits perfectly.

    Increasingly, I do not believe that niche necessarily is, nor should be, a mainstream school environment. We seem to view a "normal" school classroom as the ideal to which our autistic children should be patterned and acclimatised. Special Education educators seem to promote this point of view generally to the detriment of the autistic child.

    I know that labels really make little difference to what is really going on - whatever you call it, the child is still who he is. However, labels do give you access to services. I was concerned that by trying to get me to agree that the autism label could now be discarded, the school counsellor was working towards getting difficult child 3's support cut back or even eliminated. If we lost the diagnosis we would lose a great deal more financial and practical support which we still needed.

    A mother here said something about how her child (on the spectrum) was not socialising, was learning at home and doing well academically, but showed no interest in meeting other children or in mixing with them. He was competent socially when he had to be but chose his own company. The mother was saddened by this, for her child. This is still an example of how we as parents also get programmed with the wrong ideas for our children - we can be sad for ourselves that we have raised a child who prefers to avoid crowds and has only one or two friends; but surely, if the child is otherwise happy and doing well, we should accept that THE CHILD is happy.

    Some autistic kids are able to manage better in a mainstream setting. For them, that is great. But that doesn't make it the ideal for all.

    difficult child 3 loves being around other people. However, WE have learned that large groups of children are anarchic, they also do not have the social maturity to not make his life a misery. And when in his life, when he is older, will he ever have to mix with a large group of unsupervised children as an equal? Never. So what is so wrong with difficult child 3 preferring to talk to people who are NOT part of a large group of unsupervised children? difficult child 3 does well with childrens' groups who range widely in age. he does well with adults. He was telling friends we met yesterday at the supermarket that he enjoys shopping. He used to hate it when he was much younger, because of the noise and the crowds. He now takes it in his stride. What helped him do this? Surprisingly, it was NOT mainstream attendance.

    We are seeing, here in NSW Australia, that educators are starting to accept - autistic kids cannot learn social skills merely by being thrown into the mix of a mainstream school environment. That is how "normal" kids learn social skills. A big reason for the autism diagnosis is the difficulty with social interactions, despite the child having had the same upbringing as other kids. Why has the autistic child not learned age-appropriate social interactions? Because they need to learn a different way. And also maybe because they cannot learn it.

    To force an autistic child into a situation where he has the opportunity to learn doesn't mean he WILL learn. He can't, if his brain is not ready. His brain may be more than ready to learn an amazing range of other things, including complex mathematics and nuclear physics. But if he has even partial face-blindness, for example, you may not know - and it is a huge disadvantage socially. Hsving to cope with large numbers of other people (especially dressed all the same, as is common here) is setting him up for failure. difficult child 3 was trying to adapt socially, but also learn academically. He IS bright but there are limits to how much he can learn. Social skills took a priority for him so academically he learnt nothing at school. What he learnt socially was confusing, was often inappropriate (due to the behaviour being modelled for him including bullying, sarcasm, control, rule-breaking) so really, it became a negative influence for a number of years. However, educators back then were still insisting that his diagnosis of autism REQUIRED him to be forcibly kept in mainstream.

    That attitude is changing, for us. It sounds like it hasn't yet, in your area.

    Your son is currently doing well, you feel because he's in a one-on-one learning environment. And you are undoubtedly correct.

    What do you hope to achieve by moving him back towards mainstream? (I'm not asking in frustration, or feeling aggrieved - I'm just asking - what are your aspirations for him? Your hopes?) Are you hoping he has improved sufficiently to be able to continue to learn well but also have the opportunity to adapt socially to the presence of others in his learning environment? I hope this is possible but I fear it may not be. Much of the outcome will depend on the social maturity of the kids around him, the compassion of his classmates and also his teachers, the willingness of his teachers to accept his good qualities and to help him rather than watch him to prevent him hurting others.

    A good outcome can happen when the classmates are well prepared and given an understanding of autism ("Sixth Sense" program is something I highly recommend, as long as it hasn't been diluted to ineffectiveness as has happened here in our area, where it is presented to the class and the word 'autism" isn't even mentioned!). the teacher also needs to be thoroughly on board and it's highly likely that your son will need an aide. Unfortunately, schools prefer the aide to be in the classroom, because they put a high priority on academic achievement. And yet - they have just insisted that this autistic child needs to be with other children for social reasons - surely this implies that to support social success they need to have playground supervision in place?

    What we found - difficult child 3 did much better when he was less anxious. Knowing he was going to be bullied or made to feel a misfit whenever he went out into the playground, raised his stress levels to the point where he was not functioning in class. We would find each successive school year, the problems would begin earlier. At first it was the final term that was worst. Then it was the second half of the year. Eventually it was the whole school year.
    difficult child 3 was once given playground supervision for one term, the final term of the year. His behaviour improved, his confidence improved, he came home one day to tell me how the bullies had been hassling him but he had found someone to tell and that person had caught the bullies red-handed; at last the policy of "go tell a teacher" had worked. His classroom work improved. But the school fought it and I could never get it reinstated. Things went back to their previous bad level.

    Back to your son - the times when he is going to need most support and supervision is when he is mixing with other kids. So yes, it's a good idea to do this if only to test what he can handle; I would make sure, however, that there is an aide within coo-ee who can keep an eye on how he is going. H doesn't necessarily need someone at his shoulder; difficult child 3's aide would watch from a distance and sometimes would organise a ball game with difficult child 3 as one of the players. A teacher organising a game is then available to make sure the kids don't change the rules - kids do this, not intending to be mean, but they are able to easily understand subtle communication where an autistic kid can miss it. A common problem socially with difficult child 3, when he would come home having been disciplined at school for hitting someone, being rude to someone or any one of a number of problems, was an issue from the school playground often involving a piece of equipment or a game, in which other kids told difficult child 3 that the rules had been changed. difficult child 3 knows rules. He has spent his life mentally writing rules to help him understand a very confusing world. So when a kid tells him the rules have been changed difficult child 3's increasing cynicism would convince him that the kid was trying to take advantage of him and was lying.

    Our kids are only a danger to others, when others have taught them to be by their own behaviour. The knee-jerk reaction to a kid saying the wrong thing - we shouldn't be so quick to jump on a kid who says, "I'll kill you." Especially an autistic kid who is often only repeating what has been said - to HIM!
    To punish this is to send a message to the autistic kid - "yes, the rules apply - but only to you. Everyone else may break the rules when they want to, but we WILL catch you. It's because it's you, we have chosen to watch you closely because you are different and inferior."
    That's why difficult child 3 got to the point where he accepted that he would get beaten up. All he asked was for it to be over with quickly.

    We pulled difficult child 3 out of mainstream, with resulting "shock and horror" reactions from local Special Education educators as well as local teachers, friends, family. I was told I would damage my son by socially isolating him. I was told that I would be overwhelmed by the workload - if trained professional teachers with all the resources of a school couldn't teach him, then how could I expect to manage? I'm disabled, I get tired easily, how would I cope? It would be a disaster, I would come crawling back and need to reapply for the support funding with no guarantee we would ever get ANY support, let alone the high level we had previously had for difficult child 3 (this last was just plain untrue - they were desperately trying to frighten me out of this).

    We're doing much better. difficult child 3 still has problem days (or months) which often point to a need to modify his medications; but he had already demonstrated that he learns much better when in a quiet one-on-one environment. The reason for this is, to do effective academic learning he has to be in a quiet, non-distracting environment. In even the best-behaved classroom with the most decent, loving and considerate kids, there are too many distractions. A chair scrapes. A kid coughs. Pencils tap. Kids ask questions. Teachers answer them. Teachers also pause and break into the silence with, "Don't forget to turn over the page when you've done the first side." A car goes by. Birds chirp. Bells ring. Between difficult child and the blackboard there is movement.

    We've found at home that we have similar issues - but we can deal with them more easily. difficult child 3 can listen to music while he works, which drowns out background noise. Some things we can't deal with - local building work with pile drivers anywhere within a 10 km radius can interfere with his ability to work, because the vibration comes through the ground. If he sits on his bed to work, that can sometimes damp it out enough.

    The workload for me - it's LESS! I do not have to keep dropping whatever I'm doing and go to the school in response to yet another phone call.

    Your son - how is his language now? And what specifically is his reading problem? I find it interesting that he asks you how a word is spelled. Is he asking because it helps him understand the word better? Or is he asking because he gets the letters backwards, or chooses the wrong phonics? difficult child 3 would ask how a word was spelled, because he needed to mentally visualise the word before he was able to use it in conversation.

    What can help your son - read books with him. Maybe take turns in what books to read. Be aware that he may be upset by some books for reasons of his own - difficult child 3 gets really upset by conflict, which unfortunately is vital to most story lines. He watched "Finding Nemo" through fingers over his eyes, or curled up on the floor of the cinema, groaning. Mind you, as he left the cinema he asked, "Can you get me that DVD for my birthday?" Once he's experienced a book/film, he's OK.

    difficult child 3 & I would read books aloud to each other. One would read the dialogue, the other would read the rest. difficult child 3 & I would discuss it but I was usually happy with whatever he wanted. And even by listening to me do different voices for characters, difficult child 3 learned how to read with expression - a rare thing, apparently, for someone with autism. It shouldn't be rare - all they need is the example.

    Something else you need to teach him - to find his weakest point and deliberately walk towards it, trying to find a way to learn how to do better. Be ready to back away again if he's just not yet ready to learn.

    We were originally told that difficult child 3 was not as bright as he seemed. He was a child who was reading fluently at 2, although he had limited understanding (ie language deficits). It was bizarre, a bit like a woman I knew who had a stroke - the woman couldn't talk at all but could pick up a book and read aloud. She could communicate by writing things down. She could then read aloud what she had written. But she couldn't speak, otherwise. That woman DID have language, because she could write her own words. difficult child 3 could not, at that stage. he could only write (or type) words he knew. He could play piano and read sheet music at 3.

    But when given his first psychometric assessment at 4, he failed. They said he was "borderline". (Borderline what? They never said. Implied though, "borderline retarded).

    Similarly, difficult child 1 'failed' his first IQ test. The school counsellor had given it - she said his IQ score came in at about 80-90. Then we talked further and found tat difficult child 1 had been so anxious he hadn't completed the test but she had scored it as if he had.

    Since then we've had them tested again. It has been very difficult to get an accurate IQ score for either of them, but there was a research study a few years ago where they were trying to refine a means of assessing a more accurate IQ score for high-functioning autistic kids. difficult child 3 scored about 145. difficult child 1 has been given a still likely inaccurate score of 125 (a later school counsellor score).

    difficult child 3's general knowledge is still poor. He has big gaps in his knowledge, mostly due to his inability to learn during those years he was in mainstream.

    Last week we received an email joke - "Credit crunch begins to bite Britain." The image was of the Queen - dressed in a McDonalds uniform.
    I showed difficult child 3. He said, "That's creepy."
    I asked him why.
    He said, "YOu don't usually see old women in McDonald's uniforms."
    I asked, "Do you know who she is?"
    "Um - she's in parliament?"
    I told him it was the Queen and explained the joke.

    A few days later there was a photo of the Queen (looking more herself!) in our newspaper. I showed difficult child 3. "Who is this?" I asked him.
    "She looks familiar, but I can't place her..." he said.

    But he does recognise other faces. When shopping yesterday we met two of our church elders. He recognised them as familiar (he's only known them all his life!) and walked up to say hello, began to blurt out the correct name and then stopped himself.
    "It's OK, you were right," I told him.
    He covered up his confusion. "Sorry," he said. "You're out of context. We're away from home, I usually see you back in the village or at church. It's kind of odd here in the supermarket."
    Luckily they know him and understand. I think they are flattered that he was able to even recognise them and go up to them. He's had teachers do this and he hasn't recognised them.

    We have been trying to teach difficult child 3 and support him all his life. It's what parents do. Now he's at home for schooling, he's doing so much better. And best of all - he's blossomed socially.


  16. janie

    janie New Zealand

    This is a really interesting post to me as my difficult child has ADD and Aspergers.
    I wanted to thank Beth for posting her idea of icecream sundaes as a way to describe the idea of a Spectrum.
    Just my 2 cents - although there were lots of "challenging times" with parenting my difficult child - there have been MANY joys as well ..... there IS hope, and having a child with these 'added extras" has made our whole family better people for having learnt how he ticks, and how he relates to this world. It has made us look at the world differently, and all the wonderful people who are in it. :)
  17. Marguerite

    Marguerite Active Member

    Plus - you've got to write these joys down. You might think you will remember, but you don't. There is just too much.

    But it DOES give you a very enriched life, with your kids.

    One of my favourite moments is only an example, but I remember it because it is one I wrote down. Again, it's a facet of the language delay - as he acquired language he had his own unique way of expressing himself.

    We were driving in the car on a hot summer's day. Driving in the suburbs, difficult child 3 opened the car window because he was feeling hot. But as we moved out onto the open highway, he closed the window again because the breeze through the window was now too strong and, as he said, "the wind is poking my eyes."

  18. serenityntn

    serenityntn Guest

    I hope I put the quote part in right. To be honest I don't want him in mainstream, not all the time. I believe that he does need to have some interaction with "normal" kids so that maybe he can maybe learn better social skills. When he was in the 4th grade they had him in resource part of the day and mainstream the rest of the time. It was a total disaster. It really wasn't the other children that was the problem because for the most part they all liked him. There was even a few of them that would help him with his work. The problem was he was in a class with about 30 other students and it was too much for him. He was always disrupting the class, talking all the time, interupting the teacher, and so forth. Of course it didn't help any that it was that teacher's first year of teaching lol. She had no idea what she was in for but I had problems with that school the whole 2 years he was there. They wouldn't even let him go on field trips because in their words they didn't know if they could handle him. That school just didn't want to fool with him and I think they wanted to get rid of me also. We had an IEP one time and I went completely beserk on them. I told them I was sick and tired of only hearing bad things about my son. In the meetings they never would say anything positive about him. I was so angry that I started crying. Everyone at the meeting was looking at me like I was crazy. I hated to lose control like that but the way I look at it I was like a lioness protecting her cub. Right now he's doing pretty well at school. My hope for him is for him to be in resource most of the time for academics and maybe a little bit of the day in mainstream like arts and crafts and music which he loves.

  19. Marguerite

    Marguerite Active Member

    Deb, I hear you on the social interaction stuff. We have found two things of extreme use:

    1) Pervasive Developmental Disorder (PDD) kids do not pick up social skills by osmosis; you can't just have them immersed in a room full of 'normal' kids and expect normality to brush off on them. It's not soot. Unfortunately.

    2) Pervasive Developmental Disorder (PDD) kids home-schooled are not necessarily socially isolated; often they have MORE opportunities to be taught appropriate social skills in a more natural environment. There are MORE opportunities to mingle with other people across a much wider range of humanity. And you can have the BEST school excursions, when you go as a family. Last year we had the wonderful opportunity to take difficult child 3 to New Zealand's North Island while he studied continental drift and vulcanism. There's nothing like sitting in the middle of a highly active volcanic region, watching the steam rise from the lake edge, feel the scalding hot water, enjoy a bone-warming mineral bath in zero air temperatures, to really appreciate geothermal energy. And the opportunity to actually see and photograph the continental plate margin (South Island, two weeks later) - difficult child 3 now REALLY understands this topic.

    As for social skills - he learned about cultural differences. He interacted with a lot of people in various places we stayed, at shops, tourist centres, educational centres. With us there, to help him and support this learning.

    It works for us.

    I'm not saying mainstream doesn't work. Only that the choices are broader than is often realised, and that sometimes we view options in a strict heirarchy which is unvarying - mainstream is best, home-schooling is a last resort of desperate people for whom everything else has failed.

    It's actually different to this - it really does depend on the child, on the place itself, on how it's done. You can have a brilliant mainstream setting which could help a child like yours and mine in so many wonderful ways. And you could have a bad home-school placement which isolates and stagnates the child. Or you can have the reverse.

    The thing with home-schooling, is at least there, we as parents have CONTROL over how good it can be. And with each other here, and other home school support networks in our locality, we have a lot of support ourselves to fall back on.

    When difficult child 3 was in mainstream, I often went along on school excursions. I had to work really hard to be accepted by the teaching staff - I had to find ways to make myself of value to them. I used humour - I provided the staff with a steady stream of the best jokes I could glean off the Internet. Stuff that was often "adult eyes only" and hand-delivered to the staffroom. Often stuff with a teaching theme, or similar. I told them I felt it was my duty to keep them supplied in this way, because I knew that a good sense of humour made it easier to cope with the stress of teaching my child.

    I worked hard at it. I am still on good terms with them, even though I despise what they did to my son.

    We do what we need to do, to help our children.