OK, I'm back and I have a bit more time.
First, welcome. I'm sorry you have os much to deal with, but if (heaven forbid) the baby is also on the spectrum somewhere, you will find you handle it a lot better, since not only will you recognise it earlier, but te odler ones will be a help both now and later on. This may seem unlikely at the moment, but trust me - it is happening now in my family.
Second - get as fast a look as possible at "The Explosive Child". Whatever else you're trying to work out (medications, special support) this book will help you and the kids cope better, day to day.
We are each (including our kid) a product of both our genetic make-up and our environment. Too often we think in terms of our kid's problems being fixable with medications, or being adjustable with medications. Sometimes this is so; sometimes it isn't. Often we could also make adjustments to the environemtn and also get improvement. But sometimes the needed adjustment is not practical. Sometimes it is, and often can be done at the same time. Often we are too exhausted as parents and too close to the situation, to even remember what "normal" is. In our family I do not recall what is normal - Even easy child wasn't normal.
husband & I used to joke that each time we had a child, we raised the average national IQ. Of course our children are always perfect. When you first discover that something is terribly wrong, you grieve, because you are mourning the loss of the perfect child you thought you had. Do not feel guilty for this - you need to do this before you can move on. And move on you must, if you are to help your child.
What will help you now, is reading. You will quickly learn what books will help you and what ones will not. I urge you to first get books out of the library, otherwise you can fill your shelves with books you may not get around to reading, or may find not helpful. Not all of these books will appeal to you, but all of them are worth a try.
Books I recommend - Explosive Child, of course. It has more general applications to a wide range of problems, but some things that a lot of these "explosive" kids have in common are impulse control, poor social skills, difficulty planning what to do and sometimes difficulty multi-tasking. The kids may also have intellectual handicaps, or they may not - you can get all of these and still have a high IQ.
Another book to read - "Son Rise". Not sure of the author but it is well-known. I find some aspects of the book to be a bit "waffly" and a bit over-emotional in its flowing style, but the message is valuable and will give you hope. There are some very useful techniques described which will maybe give you some ideas on what to do to encourge your children to connect with you.
Also on the list - anything by Temple Grandin on the topic of autism. Again, she will give you hope. If you can ever get to a conference at which she is a speaker, do it. She is an inspiration. But remember - she speaks about autism as if everybody is like she is (a classic facet of autism) so if she says something that doens't seem to apply to your kids, that is why it may be different. Because she herself is autistic, her words give insight.
There are other books, other authors. An Aussie author is Wendy Lawson who wrote "Life Behind Glass". It may be difficult to get hold of it - don't stress, if you can't get it easily.
And a fiction book which you can give to any family members or teachers who are not supportive or who don't understand - "The Curious Incident of the Dog in the Night-Time" by Mark Haddon. This is a fictional book, told in the first person by the main character, who is high-functioning autistic. The author is not autistic but has an amazing understanding. The book is actually quite deep, but in clever layers just as an autistic person can move through the world and somehow cope, while never fully understanding the intricacies of the relationships of those around them.
Now to your question of medications - I'm sorry, but this is something you need to fine-tuune for yourselves. I do know that when difficult child 3 was on Strattera it was a disaster, he became increasingly violent and aggressive. He also was LESS capable of understanding reason; the night he attacked me (about a year ago now) we were at difficult child 1's in-laws for a Christmas party, so difficult child 3 was already a bit off-balance (being away from home). He was being increasingly loud, insolent and rude (apparently deliberately - very out of character) so I sent him out of the room, having to follow to enforce it. In the next room he went for me physically - also unheard of. Then he collapsed in floods of tears, not knowing what was wrong with him. But he felt completely justified in attacking me. husband & I left to go home, difficult child 3 arguing all the way home over and over, asking the same question and simply Occupational Therapist (OT) hearing the answer. We finally had to shut off debate, promising we would re-visit it the next day when we weren't all so tired. difficult child 3 was saying, "I need to talk about it NOW; you say you will answer myquestions tomorrow, but you never do."
We reminded him that we always keep our promises; he wouldn't accept it. Very prseverative. By this point we had realised we were seeing a medication-induced problem and so we put our promise in writing.
Interesting - next day he decided he didn't want to talk about it. But we insisted - we had promised and that promise held for us as much as for him. So we talked about it, also making it clear that we believed he was having problems with Strattera. By this stage we had stopped the medications and so he was starting to make a bit more sense. It took another week to get the Strattera out of his system.
The rason the Strattera was tried - because a new psychiatrist was concerned at the high dose of dexamphetamine difficult child 3 was taking, especially given his very high levels of anxiety. Stimulants make anxiety a lot worse, it is considered, so surely we should be trying non-stimulant medications in order to reduce the anxiety?
With hindsight - it was a disaster for us.
But stimulant medications aren't always right either. Ritalin was what difficult child 1 used to take but as he got older (about 8 years old) he had bad rebound problems. He was about 12 when it got changed to dexamphetamine, but the problems continued because the schools wouldn't chase him up to medicate him; they expected him to "shjow some responsibility" and turn up for his own medications. I pointed out that if he were epileptic or diabetic, they would chase him up to medicate him.
"Oh, that's different," they said.
But it is not different. If medications are prescribed, it is not for the school to decide how important or not it is.
With autism, medications may not help at all. Or they may only help a little. With difficult child 3, they helped him learn to talk. With difficult child 1 (who did not have language delay) the medications helped him do a little better with concentratyion in class, and multi-tasking. With easy child 2/difficult child 2, the medications helped her take the information on board and get it into her long-term memory. Now the older two are adults, the doctors are cutting back their medications.
Tics or stims? That is a good question. Generally in autism, they are stims although they often look like tics. The difference is - does the child get into these as a compulsive habit because doing whatever-it-is actually helps soothe something in the brain? If so, then it is a coping strategy and if you try to stop them, then you may succeed - but another habit will take its place. Over time our kids will make the changes themselves towards less socially obvious stims. Stims can include apparently unstoppable noises, hand-flapping, gestures etc.
School - it can be a huge problem, especially as the child gets older. At a certain age, boys (male classmates) can be increasingly horrible to any classmate who is different. How teachers respond to this will set the standard for how the children will respond. In difficult child 3's case, the kids learned thta they could hassle difficult child 3 because the teacher wouldn't do anything about it. This was complicated by difficult child 3's partial face blindness (which we didn't recognise properly ourselves for years). He was unable to accurately identify who was attacking him. All of this greatly aggravated his anxiety and his aggression. He began hitting other kids, teachers reported "unprovoked attacks" which seemed to us to be aimed at those kids that difficult child 3 reported as hassling him, long-term. Oteradults in a position to observe also told me quietly about their observations of difficult child 3 being tormented, often right under the noses of teachers. Because difficult child 3 himself couldn't accurately identify under questioning who was responsible (if he showed any uncertainty, he was deemed to be lying or mistaken in the face of denial from the other child) then even with these independent reports, nothing could be done.
We tried medicating ths added aggression and anxiety - slight improvement only. But looking back - why should WE have had to try to medicate away a problem that was purely environmental in cause?
Our choice to remove difficult child 3 from mainstream was not taken lightly and was taken over the active objection and obstruction of the local Education District Office. I had to threaten to go to the media to get help in order to get them to back off.
Their fears? If you remove an autistic child from mainstream education, you are removing that child from social interaction. And an autistic child NEEDS social interaction more than most, in order to learn how to fit in socially.
I delayed pulling difficult child 3 out for a number of years (made the same mistake with difficult child 1) for these very reasons.
THEY ARE WRONG. On many, many levels.
1) Social interaction IS valuable with autistic kids, but it must be POSITIVE social interaction, carefully supervised to be able to utilise everything as careful positive learning experience. School was unable to provide this for us; in fact, with the ongling bullying, school was a negative learning experience for difficult child 3. Not only did he not learn anything useful socially, but even academically he as learning NOTHING at school. They let him coast, his own hyperlexia was what made him look like he was learning. In fact, he was learning nothing, while slowly everyone else caught up with him. Meanwhile at home he played on educaitonal computer games and learned there. As he began to take time off school with increasing nausea, low-grade fever and vomiting, I made sure that being at home would not lead to a pavlovian reward response and so I made sure there was always "school work during school hours" wherever he was at the time. And at home - I watched him learn and begin to make academic progress.
2) Being away from a mainstream setting often can INCREASE opportunities for positive, supervised social interaction. The most important thing - there is less formality in difficult child 3 having to be at a particular place at a particular time, so in the event of a negative interaction, difficult child 3 now has the greater chance of being able to walk away. "I am going home now," is what he can say if things start to go wrong at a friend's house. I often go along and while difficult child 3 plays with his friend, I chat in the kitchen with the friend's mother. also, difficult child 3 comes shopping with me and helps with groceries, for example. This provides learning experiences as well as the opportunity for supervised social interaction directly working towards life skills. difficult child 3 says, "I want an ice cream," and I give him money to go buy one. He has to interact appropriately with the shopkeeper, pay for the ice cream, get the right change and so on. Over time his skills have improved to the point where he noew shops for his own computer games, often price-matching at different shops and bargaining them down to the best deal. He is increasingly well-known in many shops where, since they do not run and hide when the see him, they must be happy to deal with him.
3) Children with autism need to be formally taught how to interact socially, and can only learn when their brains are mature enough for the lesson. They cannot learn this merely by osmosis. Being around other "normal' kids who are increasingly interacting with one another on a much more sophisticated level than the struggling autistic, does NOT teach the autistic person how to fit in. if anything, it alienates them further.
What we were finding - increasingly, the gulf between difficult child 3 and his peers was widening. There had always been a gap, but his peers would generously reach across the divide to psend time with him - after all, they might be rally good at some things, but difficult child 3 was a wizard at other things these kids valued (such as "help me get my character to the next level in the hand-held computer game please"). However, it was becoming increasingly obvious that difficult child 3 was unable to hold a conversation with his peers. Not for lack of language (he has now caught up and his language, previously seriously delayed, is now in the superior range), but lack of understanding how to use that language to converse appropriately. The wider the gulf, the more even the nicest kids will shrug their shoulders and go find someone else to play with. it's natural.
About this time we found more valuable reading - the website of James Williams. At the time I found his writings, he was an autistic teenager who was writing and lecturing on various education topics to deal with autism, especially issues to do with schooling and social skills. He described his own experiences outlining what worked as wel las what did not. Very useful stuff, and it gave me the courage to follow through and continue to remove difficult child 3.
What we have found with both boys - our education systems do not like to let go of their students, especially the special needs ones. Partly this is because they get federal funding to cover support costs, which in our case the school gets to spend as they see fit. Remove the child and the funding has to be refunded. and partly this is because educators still often don't properly understand autism.
Both boys were failing in mainstream. Both boys turned this around when we changed to a state-based correspondence school - Distance Education. You've heard of the School of the Air for Aussie kids in the outback - this is a city-based version of the same thing.
The kids work at home (with occasional visits to the school which in our case is in the old heart of Sydney). They work in their own way at their own pace. Because the work is posted to us (or emailed) the presentation of the work is highly visual. For kids who are not visual learnewrs, there are other options. it is a mainstream program academically, the boys competed against their peers in the state system. ie against former classmates across the state. No concessions have been needed for the autism, other than teachers making the work more accessible to them. Some lessons need to be explained in more concrete terms, but a kid learning about continental drift will get the same material and sit the same exam, whether he be a normal kid in mainstream or difficult child studying via correspondence.
For us and for the boys, this is the best thing we could have done. I wish we could have done this with easy child 2/difficult child 2 but she was happier in mainstream (even though I think she would have done better in correspondence). The older two graduated from high school, difficult child 3 is not there yet but well on the path.
Last (for now) - we have taught our kids to value themselves as they are. Ours is a different household, it has been described as "an enriched environment" because of the type of 'toys' lying around everywhere. gadget central. We accept our kids' differences but still work them towards learning how to fit in to society. The older three are now all married, difficult child 3 is still too young, of course. They view their autism as simply a part of the way they are made. They understand that it means they learn in different ways and need to actively work to find that best way for themselves. But autism also brings unexpected gifts, including the hyperlexia, the high intelligence and the ability to focus intently on fine detail, to the exclusion of a lot of other things, to a greater degree than most people.
It's a package deal and to accept one part of the package, they have to accept the lot.
A big part of the socail problems is their unswerving beleif in total and utter equality. All men are equal. OK, we are taught this, but to our kids it is real. The trouble is, it is simply not true. Some people are a lot more equal than others! If you as a parent try to use, "Because I said so, that's why!" you will find it getting used back on you. These kids lern by YOUR example, and if you want your child to treat you (and others) with respect, then you have to model that respect for them (regardless of how they behave towards you). This, again, is part of teaching them.
In our family we're further down the road than you are, so if our experience can help you cope, then feel free to pick brains. Use what you want and leave anything that doesn't fit. Learn to value your instincts, trust yourself and be strong. With your kids - be loving, be supportive, be encouraging and avoid punishment where possible. Natural consequences are much better. Punishment looks (to the autistic child) too much like revenge. As a result they won't learn from punishment, because their resentment will over-ride any 'lesson' value. Again, "Explosive Child" can help you understand this better, to the point where your own instincts can help follow through. Remember, autistic kids tend to be far more honest and law-abiding, so discipline methods can afford to be different.
I've tried to keep this brief and a summary. I don't ant to overwhelm you. But what you describe - the house full of bright, hyperlexic, autstic children - sounds like our home.
One final thought - a friend of ours, actually difficult child 3's speech therapist, has one precious only child, a highly intelligent prodigy of a darling. She's wonderful, I enjoy coonversations with this girl. Very bright, but very normal. difficult child 3 also likes her, they are good friends. After they had played together one afternoon, difficult child 3 said to the speech therapist, "Is your daughter autistic?"
"No," replied the therapist, started and a bit affronted. "Why would you think that?"
"Because she's so very, very smart, I thought she must be," he answered.
You want your children to think of themselves that way. Because an autistic child has gimlet-like determination, if that determination is aimed at their progress and development, they can move mountains!
Marg