G'day, dandrews.
As husband says (paraphrasing "Arsenic & old Lace"), "Autism doesn't just run in our family, it gallops!"
difficult child 1 (our older son) was always different and a handful (although a good kid, but needy) and was originally diagnosed and treated as ADHD for years. The ADHD medications did help him but never fixed everything; he was my first experience with GFGdom and so I was often struggling in the dark, not knowing what questions to ask or how to get things addressed. Meanwhile the poor lad was trying to cope at school but finding the sensory input from all directions to be total onslaught and completely unworkable. His older sister was very bright and capable; their younger sister was similarly bright and needing to be accelerated into school and we had to hunt around to find a school prepared to take her, so the kids ended up at a city school experienced in dealing with a wide range of needs, difficult child 1 ending up with his sisters.
Then difficult child 3 was 'different'. We had looked for help (with both boys) and kept getting told, when the boys were very young, that because boys develop more slowly than girls that we were worrying unnecessarily and they were just typical boys. But opinions can vary widely - one doctor would tell us that difficult child 3 was OK and not to fuss about him ("Stop trying to find things wrong with your children!" got yelled at me by one doctor, in front of other patients in the waiting room) while others got angry with us and called the authorities on us for apparently neglecting our son's care.
Sometimes you just can't win.
It was because we were trying to get answers concerning difficult child 3, our youngest child, that we asked for a harder look to be given to ALL our children. difficult child 1 was now in his early teens and it was increasingly obvious to us that there was something about him that just didn't fit the ADHD profile; ADHD seemed to be part of the picture, but the biggest problems were unlabelled. Also by this time we were seeing problems (behavioural and learning) in our younger daughter, previously diagnosed as 'merely' a child genius.
Asperger's Syndrome was something I'd never heard of. However, knowing (now) that it is sometimes referred to as "little professor" syndrome, makes a lot of sense. Our genius daughter, our youngest son with prodigious skills in some areas - it all seemed to fit the Asperger's picture much better than ADHD.
To cut a long story short - we eventually found a doctor prepared to at least give a provisional diagnosis. "Somewhere on the autism spectrum" was where he put difficult child 3 (technically the only patient) with a recommendation to get ALL the kids seen, especially the younger three. Then we found a pediatrician who diagnosed formally - both boys definitely on the autism spectrum with difficult child 3 fully autistic and difficult child 1 having Asperger's. easy child 2/difficult child 2, he said, had some Asperger's traits but not enough for a diagnosis. All three also were diagnosed ADHD on top. All three were put onto dexamphetamine. difficult child 1 had previously been on ritalin with some limited improvement.
That was 11-12 years ago. Since then we've learned a lot, especially after joining this website.
We had the kids assessed in detail by a psychologist experienced in assessing kids with autism spectrum - she confirmed the diagnoses. Again, difficult child 3 was declared to be fully autistic, not Asperger's. I wanted more so got him into a highly recognised clinic in Sydney. They were VERY pessimistic, perhaps because when they assessed him he as still mostly non-verbal and they did a psychometric assessment which required them to ask him questions verbally. if they'd given him a written test he would have understood the questions, but he was not good at understanding what someone said. Even today, at 14, he understands better when it's written down. Yet his hearing is perfect. The clinic told us to not expect difficult child 3 to ever go to a normal school, told us he was "borderline" (ie retarded, in the old parlance) and that his skills were simply 'trick' memory things, no intelligence lay behind any of it. They also assessed difficult child 1 and said he wasn't Asperger's at all.
They were wrong on both counts, because there were big holes in their assessment methods and they were not prepared to be sufficiently adaptable.
Now - difficult child 1 is getting married in two days. He is still going to need a lot of support but the positive characteristics of someone with Asperger's are what has 'sold' him to his fiancee. Aspies are intensely loyal, loving, law-abiding (their own understanding of the law) and generally do best with honesty. Occasionally they may try to lie by omission, or limiting the truth they tell, but they find lying difficult to do and often avoid it. They generally cannot be creative with the truth.
difficult child 3 has won awards for his academic progress. His savant skills are less obvious now than when he was a pre-schooler, but are the reason he is doing so well. From initially being told he was retarded, we've now been told his IQ is modestly measured at somewhere around 140.
Now to girls - my girl, at least. She is different to her brothers. In my reading I'm finding that girls with Asperger's often seem more capable in some areas, less os in others, compared to boys with Asperger's. I read somewhere that the rule book is being rewritten because trying to diagnose girls with Asperger's is difficult. We're still considering the likelihood that if assessed today, easy child 2/difficult child 2 WOULD get an Aspie label.
I mentioned the ADHD component in my kids - I do believe the doctor was correct with this. They DO all show improvement on stims. However, the dose difficult child 3 seems to need is huge, his new specialist is concerned about it and wants to experiment with cutting it back and trying something else. The dosage doesn't seem to match the extent of problems we see if they miss their medications - difficult child 1 missing his medications is a huge problem, he gets aggressive and sometimes violent off his medications and yet his dose is half that of his little brother's.
Things I've learned on this site that have helped me -
1) For behaviour issues, get a copy of "The Explosive Child" by Ross Greene. It can really help, it doesn't matter what the diagnosis is. It's also something YOU can do while you're waiting to get more 'professional' answers. If you want a quick preview of the book, go to the Early Childhood forum and see what the stickies say on the topic. Or get a copy out of the library - but get a copy and read it. It can show you a different way of looking at your child, looking at discipline issues and making life easier for everyone.
2) To get an unofficial preview of whether Asperger's fits, look at Pervasive Developmental Disorder (PDD) on a broader scale. Again, it's unofficial - we can't diagnose on this site even if we were professionally qualified. It's not the sort of thing done online or long distance. However, if you read up on it (Pervasive Developmental Disorder (PDD) = Pervasive Development Disorder, it's the big umbrella under which autism, Asperger's and PDDNOS fits) then you can go in to a specialist's appointment a bit more informed. So have a look at the Pervasive Developmental Disorder (PDD) questionnaire on
www.childbrain.com. Go through it with your child in mind, use the hot links to the support information on each question if you need it, and see how your child scores. Print it out regardless of the result because even if she scores as "no Pervasive Developmental Disorder (PDD)" it can still show a doctor the things that are concerning you.
3) Keep a diary on your child. I have my diaries on the computer, but we also had a "Communication Book" which travelled in difficult child 3's schoolbag, to save on having to organise to talk to the teachers after class on an almost daily basis. It was so much better to quickly jot down, "He had a bad night last night due to the storm, he is likely to be more tired plus more distractible."
In summary, whatever is the problem for your daughter, there are two directions you need to work on at the same time.
1) You need to work on a diagnosis and getting official help put in place (as required) through school. AND
2) You can at the same time get your own understanding of your daughter to help you handle her, to help her learn to adapt to the world as best as she can. Be prepared to throw out the rule book and turn your parenting methods upside down. Old ideas based on a heirarchy - "I am the parent, you are the child" - often can make a child like this worse. Where there are possibly delayed social development issues, the child is unlikely to learn social skills "by osmosis" like other kids do. Instead, they will imitate what they see, and they will often imitate the adults around them. So if the child is surrounded by adults who present as stern authority figures, that is the way the child will try to behave towards others (often very inappropriate, coming from a child). But if you treat such a child with respect and gentle kindness, that is what they try to use in their own behaviour.
It is difficult to treat a child with respect and gentleness, when they are standing there hands on hips screaming at you for being insolent to them. But as Dr Phil says, someone has to be the hero in the situation and frankly, I think it should be the adult/parent, not the (often socially inept) child.
Anyway, welcome to the site. This is a friendly, welcoming and useful place. Do a sig when you can (to make it easier to keep us updated without getting typist cramp). Keep your names and location confidential so you can feel free to vent without risking breach of privacy. You need to be able to vent without fear of the person you're venting about tracking you to the site and reading your innermost thoughts!
Marg