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) "...you 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.
SURPRISE!
Marg