Asperger's Syndrome Community
DESPERATE FOR HELP
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This forum is an un-mediated, patient-to-patient forum for questions and support regarding Asperger Syndrome issues such as: Balance, Behavioral Issues, Causes, Characteristics, Classification, Clumsiness, Communication, Diagnosis, Gait – Walking, Genetics, Medications. Parenting, Prognosis, Restricted and repetitive interests and behavior, School Issues, Screening Sleep Disorders, Social interaction, Speech and language, Treatment

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DESPERATE FOR HELP

My 7 year old son was recentally diagnosed with Asperger's Syndrom (syndrome)...I always knew something wasn't quite right and then one day my mom seen a special on t.v. and said tha't Peyton (my son)...His school has done all this testing but I'm not convinced he is really going to get the help he needs from this small town school...And now his daycare is giving me grief about his behavior and that they can't handle him...My son's way of trying to make friends is annoying to them because he irritates kids and then of cours they think he's strange and don't want to play with him...He goes around saying no one likes him...I often see other kids look at my son like he is weird...His cousins are use to him and just laugh and think he's funny but after awhile they get annoyed with him...I feel so lost and helpless right now...I want my son to have the best life he can without being looked at as a weirdo...Daycares obviously do not have trained professionals to help my son...I've tried to explain aperger's to them and they look at me like I'm making an excuse for my son's behavior...I'm just asking them to be more understanding and maybe read up on the matter to better help themselves and him both instead of making him out to be a problemed child...I'm a single mom wanting to know what my rights are and get my son the help he deserves.
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Can you let us know what country you are in so that people can give you information relevant to the countries education system.
As your son has a diagnosis of Aspergers they tend to do better academically.  So is he doing okay from a learning point of view?
They usually don't have any speech delays and can be quite forward verbally, although there can be some language processing difficulties and they tend to take words literally so if the teacher said to the class "everyone needs to pull their socks up", your child would probably pull his socks up and then get told off by the teacher for being cheeky!  So lanaguage needs to be simple with no double meanings.  
All children and adults with Aspergers will have problems around routines and rituals and when they have learnt to do something one way they are inflexible in doing it another way.  They are not being awkward they just 'cannot see it' another way (lack of imagination).  It is as if they don't recognise it if it is done in another way.  All changes can cause problems eg. repainting the school may mean he doesn't recognise the classroom layout anymore and may get lost in school.  Moving the furniture around at home may cause him upset because it is  'no longer home'.  Some children/adults have difficulties with face recognition and therefore recognise people by their smell, hair colour, clothes, how they move etc.  So a change of perfume can make a familiar person unrecogniseable to them.
There are usually also sensory differences so I would recommend googling the name Olga Bogdashina and reading an article by her printed in Autism Today.  I would also recommend reading a good book about Aspergers (I think Tony Atwood is quite good), and also get in touch with a parent support group.
Children with Aspergers usually manage to remain in mainstream school, but may need help with social communication (ie. how they interact/play with eachother).  Ask school if they can refer your son to someone who does this kind of work with children.
One of the biggest problem areas is also usually during freetime at school eg. dinnertime and playtime.  Some schools start dinnertime clubs etc that the child can go to so that they know what they will be doing, as unstructured freetime can be very stressful to them.  In the UK there are also schemes that can be used such as buddying and Circle of Friends which would involve the Ed Psch/teachers getting a group of children from his class/year group to basically keep an eye on him during playtime and ask him if he wanted to join in.  It would involve telling the children his diagnosis and explaining to them what this meant.  The circle of friends would have regular meetings to feedback to professionals how the group/your son was doing.
If your son does not have a diagnosis through Health it might be worth asking for a multi-disciplinary team assessment of him as that usually carries more weight.
I know it is very difficult in a mainstream school if the staff seem totally unaware of the diagnosis and its implications.  You could ask about other schools and whether they have any other children with a diagnosis of Aspergers and consider if it is feasible moving him there.
In the UK some special schools have outreach teachers whom the school can ask to come in and give them training days.  Is there any kind of scheme similar to this in your area?
Find out what your rights and your son's rights are.  Don't accept any teacher saying he is 'naughty' etc.  He has the diagnosis that explains his behaviour.  The teachers need to understand that and it is up to them to education themselves on his diagnosis.  If he was blind or physically disabled they would do that.  Autism/Aspergers is not visible, but it is just as much a disability (but also with some super abilities).  Find out what the law is in your country regarding how mainstream school are supposed to cater for disabled children etc.
If your child was in a wheelchair the teachers would not expect him to particpate in physical education.  If you son has Aspergers they should not expect him to 'perform' in his areas of weakness.  But as each person is affected differently it is up to you and the professionals involved to tease out what his strengths and weakness are.  For example one child may get upset if they are taken to school by a different route, that is a problem with change.  My son wouldn't have a problem with going a different route to school, but he doesn't recognise familiar words if they are on different coloured paper or in different print, that is also a problem with change.  So both children have problems with 'change' but they are presenting differently.  Does that make sense?
Hope some of that helps.  If you have any other queries please post back.
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I  disagree with the lack of flexability. Not everyone is completely rigid and lost with change. Perhaps I'm just an amnomalty or maybe it's what separates me from aspergers and puts me into PDD NOS, but I can do things different ways. It's my prefrence to do things the familiar way unless I see a better way, then I'll quickly adjust. I get bothered sometimes It highly depends on what I am doing.  I tend to perceive myself as pretty flexable, but I like to know what is going on ahead of time.  I'm not fond of surprises.  With changes, I like to be the one making the change.  For me it's a control issue. I like to be in control of any major changes in my life. If I can't be in control, then I'm left feeling helpless to varrying degrees. It gets annoying because a lot about life requires accepting things that I have no control over whatsoever...not to mention a grand mumber of those changes are rather unpleasant or just downright confusing or inappropriate...

For instance repainting a wall that looks pretty fine... It makes no sense.  I guess someone must had gotten bored and because they have control, they can do what they want.  Someone dying their hair another color: What the heck? What was wrong with their natural color? If allowed to let my personal opinions run rampant, then I'd think of the person being taken in by society rather than accepting themselves for who they are...Especially if they had a beautiful reddish brown color and decided to dye it pale blond... Ick... (I know someone personally who did this and because they are pretty close to me, I expressed my opinion.)  Okay... Maybe that's the bottom line to the lack of flexability/change issue for me... If I don't see a logical reason for the change then I feel like what the heck...if it ain't broke then why fix it? It's not that I can't see the connection, it's that without an explanation, I think the change is bottom line stupid and unecessesary.

So if someone can, enlighten me. If people going to change my "world" please explain to me why. That way, perhaps I'll agree with them. Or perhaps I won't.  At least I get to enjoy their perspective for whatever it is worth.  I think this is part of my general curisity. I like to know EVERYthing about the world around me...every little detail.  I like to learn things. Deprive me of that opertunity, then I feel a bit cheated along with the change... No wonder I get upset. I like to be the one in control or at least understand the crux of the issue.

If I had total control, you can bet a certain president would not have been elected, much less carry through two terms... The war in Iraq would have ended when the war was "officially" delcared over... Several thousand people wouldn't have died... Eeveryone would have affordable health care, all pollution would be removed from the planet, wildlife would be preserved and natural habitat, all food would be organic, affordable,  and so on...  On a more personal scale, I'd like the bus to come at my beck and call, no waiting... The street would suddenly be empty of cars when I'm waiting...either that or cars would't produce any noise. Or heck, maybe people wouldn't need cars. They cna just telo-transport... People would be tolerant and overall very friendly and accepting... All mean people would become nice, have their personal problems resolved so they aren't stressing me out with them. I'd have my own place and likely with a beautiful landscape to gaze at. My job would pay me lots of money...

Okay... We get the picture...  It'd be some sort of utopia.

I don't lack imagination. There are quite a a few autistic/aspergers people with well developed imaginations, just to the outside world they tend to be mistaken for not having imagination. (this was spurred on from a discussion I read a while ago on wrongplanet (which is a webforum for people with aspergers). A number of people argued with the lacking imagination myth. To some people they found it true, but others not.  There are non autistic people who lack imagination too so I figure the amount of people with imaginations and lacking are probably about the same with both "groups" autistic and non.

If you saw me sitting still waiting for a doctor's appointment not reading or doing anything, you may perceive that as lacking imagination. Meanwhile I may be plotting out a scene in my head. (feel free to pm me to see a link to my written work).  

I guess lack of imagination must be not imagining things the way society sets as a standard "norm" for instance if a kid has a toy school bus and toy children, society dictates in order to have imagination, the kid must load the children on the bus like the toy is intended to be played with.

But if the kid decides to line the bus up with the toy kids behind it all in a straight row, then instantly people perceive the kid to be lacking imagination.

Meanwhile in that kid's mind, that bus may be some sort of living entity that is leading the children off to a land with dinosuars.  (and there may be a few dinosaur toys stacked soemwhere else in the room.)  This is loosly one way I played with my toys. I lined stuff up but never thought about it that way.  I had them line up as if they were watching something, waiting in line... In fact I even had some toys "cut" in line or try to disrupt it, making the other toys angry.

That certainly isn't lacking imagination. It's a different way of thinking and not within the stereotypical norm.

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BJ71969:

It makes me sad how intolerant people are. I wish there could be more done, not just for the autistic individual but everyone else as well.  I can be flexable and adapt, but I expect some give and take. I don't expect society to conform to me, but I don't expect to have to conform to society either...  I don't like the big rush to go for sameness and a set "standard"...and anyone who doesn't make this standard to be isolated... It's not fair and a rather cruel way of thinking...

If you can see if you can get your son connected with other autistic individuals. I've found ANI (Autism Network International) to be a good advocacy group. The best groups are from peoplew with autism for people with autism. That way your son can learn he is not alone and that it is okay to be himself.

Too much of society forces people to be something they are not and then try to medicate the hell out of them because they can't pretend very well. It makes me sad...
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Overall with changes, I like to know what to expect to prepare myself ahead of time.

For instance they are remodeling the building where I see my therapist. Noticing the survay tape, I made it my point to ask people there what's going on and what changes are being made.  That way I can mentally expect the change to happen and I am not caught off guard.

I think what I am describing is fairly normal to everyone, maybe more than most peole will admit...  That part makes it hard for me to figure out how much is autism and how much is "normal"... Maybe I should just accept it is normal for me and not try to make the autistic/non-autistic distinction.  It isn't a black/white autistic/non-autistic world. It's a gradual scale and each end is considered extreme. Most people fall in the "middle" somewhere. You have people who like to change things at a whim just because they can... and perhaps they find extreme anxiety if things are kept the same.  Then on the other end there are peopel who like things kept the same and get extreme anxiety if something is changed.

I prefer things to be kept the same unless it's something I don't like... If I don't like a particular piece of furnature I won't hesitate to have that moved.  When I moved in my grandma's house, a lot got moved. I wanted it that way. We got rid of one bed so I can have a table with my computer.  I also set up a plant stand w/lights and before then moved out an ntique dresser. (It's in the attic now.)  It was little bit sad because I was changing some things that were unchanged since my childhood, but overall that was short lived. I accepted the change... If I had my way I would even choose to repaint the wall from the bright chalky yellow color it is now to a shade of sky blue, with perhaps some sort of cloud like dappling. That'd be awesome. I can see it in my head, but am not allowed to carry though with it.

As you see my resistance to change is highly selective and based off my personal prefrence. Things I like I don't want changed. Things I don't like, go ahead and change them as long as they aren't made worse.

With routine: if there is a better way I can easily do it, then I won't hesitate to change.  If the change in routine is going to slow me down and make things worse (or have quite an abrupt learning curve), then I'm going to protest. If the change is unnessesary to my own mind (meaning it won't make the process any better, and possibly no worse), then I'm going to stick with my way and disregard the other way unless it is forced upon me. In that case I'll likely be resentful.

Social: I probably annoy people because I like to ask questions... perhaps questions they may not know the answer themselves. There are probably other things I do that annoy people...but I think the question asking would likely be a big one. It seems most people are not very curious about their environment or they surpress their curiosity pretty well.

Perhaps some of you parents lurking this forum may find the same to be true with your child, regardless of being considered autistic or not? I wonder.
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I think Sally is just posting a list.  Many of the cildren who are diagnosed as autistic by a school oard would not even pass a clinical criteria evaluation.  For Sam to be considered borderline - there was alot of twisting.  As his doctor says - there is waiting room diagnosis and then there is Sam.  And we all want a crack at Sam.  My son goes to a school designed for Asperger's and he is the Mac Daddy of the group.  When we have play dates with his classmates I have to change my perspective about what inflexible means to one person versus another.  For instance, when his best friend comes over - I better be ready to go.  He immediately wants to go to the pool and then to the snack bar where he orders the same thing every time.  The rest of the day involves watching the Simpsons or talking about comic books.  Nothing else is allowed.   Sam never had such a limited range of interests -so I was a bit shocked at that.   he is a funny, smart kid.  He was angry at something one of my girls said - and decided he was going to find his father and go home.  I coaxed him in and told him on no uncertain terms that he can't just walk off.  I wasn't yelling but I used my best camp counselor voice.  Now, he thinks I hate him.  

Sam is inflexible when it comes to transitioning - i.e. time to stop reading and multiply your fractions.  He will fight over doing one small page of mathematics for over an hour that only would take him 5 minutes to do if he sat down.  He has never connected the idea at school or home that if I do this now - mom or teacher will not nag me for an hour.  He spends an awful amount of time arguing over some simple tasks. Then he gets angry that someone dare assign him anything - like he has a pass in life from fufilling any responsibilities.  I think, aside from executive dysfunction, most of the problems I see with autism is that autistic people do not care about other people's needs or wants.  And even though we are tolerant of some of his behaviors and obsessions (like a ton of Bioncles) I think we have (and his school has) come a long way in teaching him that society will not tolerate these self-centered behaviors.

It would be nice if we lived in a utopia where everyone tolerated differences - but that is not the case.  There is no magic portal that will open to a world where one can exist without making peace with society.  We are always reinforcing the idea that society will not tolerate his behaviors and he is looking at having a miserable life if he doesn't adapt.  Society does not care.  Sam lives a very comfortable life.  He has always lved in luxury buildings, travelled to exciting places, and most of his materialistic needs have been fufilled.   Occasionally, we have to hit him with reality that all this good stuff is made available to him because his father works hard for it.  His father, who sometimes puts in over 100 hours a week, does this so he can give his family a good life.   And honestly, with a lot of correction it is beginning to work.  For instance, last weekend he blew up at my husband in a store for refusing to buy him a Red Bull.  The other customers were even telling him that he  was a disrespectful child.  When we got back to the car my husband announced that he had had it and we weren't going to Kungfu Panda.  I expected Sam to go ballistic - instead he turned to us and told his father to take his sisters and leave him at home - why should they suffer for his bad behavior.  I consider that a big step.  For once, he gave a rat's tucus about someone rather than himself.  Although things are not perfect, he is starting to get it.  I don't know the name of the book - but it is written by the Asperger brother of Augustus Burroughs "Running with Scissors".  He ended up having a relatively interesting life - but he said he made a choice about which way to go.  One can retreat or one can swallow it all down and learn the rules.  I truly have no idea which path is harder or if everyone even has the ability to make that choice.  This may be easier for people with Asperger's  - since their verbal abilities are usually strong - I don't know.  But we teach Sam "the rules" every day.  I figured if I could train a dog for obedience trials - we can train an intelligent person.  His teachers have seen it - his work production is soaring - and he is learning that it is easier to start viewing the world as others see it.  But it is a constant fight to pull him into the real world.

I too have a problem with the no imagination criteria.  I don't get where that comes from. Sam is currently writing a play about the Devil retiring from hell and he is interviewing his successors.  He is poring through his history books looking for the devil's likely replacement.  Since we were never religious - he has no real indoctrination to rely on - so now we are discussing what the true nature of evil is.  I never thought I would be discussing this with a nine year old.  

I just saved a little poem he was writing - about a leprechaun offering some gold to anyone who could get him a date with a pretty girl.  I love finding this stuff on my computer.  Especially the line - I am just an Irish dude looking for love.  Not Byron - but pretty cute.
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To clarify, all the things I mentioned can be on a spectrum as well, with each individual presenting with different levels of difficulty in each category, and obviously I haven't listed all of the categories of behaviour, cognitive functioning, social interaction, imagination either.  But typically in autistic spectrum disorders there is this spiked performance chart where they do better in some areas and alot worse in others.  Whereas in delayed development there tends to be a more general level of ability across all of the functions.
My main advice would be to become a bit of a detective and watch the behaviour and then try to get at the root of it.  Sometimes you can do that yourselves, sometimes you need professional help to do that.  
For example it looks like I will have to pay for a private Psychologists report because the Educational Pscyhologist, employed by the state, has refused to test my son as she says that all children on the spectrum have 'these type of difficulties'.  The real reason is that if she tests and it turns out that her testing proves he needs more support then they have to provide it.  What that leaves me with is no idea whether my son is failing academically because (a) he just isn't smart enough (not matter how much we plough in we won't get much improvement back), or (b) it is a learning difficulty due to autism/dyslexia/cognitive processing problems (in which case specialist teaching may result in vast improvements in his academic attainments and future prospects).  This also applies to any difficulties in non-academic areas.
It is quite possible for autistic people to have imagination, theory of mind, sense of humour, empathy - but that fact is that they have to show 'enough' of it 'across the board' and not just in one area to not receive a diagnosis of autism.  If they do too well in any section that is when they tend to get a diagnosis of PDD-NOS.  So my son is not that bothered with change in routine, or changing the way we go to school, or changing his clothes.  But he has a huge problem with changing expectations.  So if I were to say 'today we are going to school this way', he would be okay with that.  But then if I remembered that I needed to go to the shop and therefore had to go to school the other way, he would get upset about that change.  If I had said we were going to school past the shop in the first place he would have been happy with that.  Does that make sense?
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But the fact that you had to go to the shop and t bothered him shows that he is inflexible.  We can announce on a Saturday morning that we are going to a movie (one that he wanted to see) and he fan become agitated because it wasn't planned - it has nothing to do with wanting or not wanting to go t the movies.   Most of his friends have the same problem - they set up a schedule of what they are doing in their head and everyone else needs to follow it.  They are almost incapable of weighing the needs of others in their heads.

For instance, they usually o to Math School on Sunday - but this Sunday it is Father's Day so we are going on Thursday.  From the moment we left last Sunday, in order that there was no confusion, we had to carefully explain to him that his work load was almost double this week so we could go to the water park on Sunday.  it took almost one hour to get this through his head why he had to double the work packets.  We spend more time explaining this to him than it takes him to actually do the work.  And this is from a kid who is stealing math homework from his school because he is desperate to do Geometry.  You may call it expectations (same expected to do 4 packs rather than 8) but it is really inflexibility.  To be fair, my neurotypical kid went on strike about it (she is not going to the Water Park if the work is not done today) and Sam had it completed last night.  

I actually feel bad about it all - but as my more relaxed Georgian transplant cousin reminds me - we are such a type A family when it comes to academics.  Even my daughter, who really struggles and was predicted to do poorly on the state exams this year, did extremely well on them and is being kicked out of extension (extra academic help).  We just don't accept failure as an option - so if your child works well with expectations than raise those expectations.  

Also, time outs are very effective to get them to work.  No - one minute per age bs.  You put them in time out - wait five minutes - ask them to do it again  repeat.  The first time we did it with Sam it lasted over 2 hours, the second time - one hour.  Now it is rarely more than 15 minutes.  Our guest bathroom has become the time out room.  My neurotypical kid spent 4 hours in the guest bathroom during one time out sesson this week - it went so late that we put her to bed - but she woke up all apologetic and smiles the next morning.  She realized that she missed a play date and was looking at being grounded for an entire week over a couple of pages of homework (she wanted to play her Wii first which is against house rules).   That is what $20,000 of ABA training gets you - it purchases the willpower to not let them wear you down.  It's exhausting, I had the worse headache of my life during our 4 hour temper tantrum, but we probably won't be having a breakdown like that for the next couple of months.  

Look, I get that they have academic problems.  I was supposed to type up this "play" Sam was working on.  I think his teacher's doesn't watch him when he does "creative writing."  I was shocked about how bad it was.  I wrote a note to his teacher about how disappointed I was that she even let him get away with writing such drivel.  He got a lecture from me on how terrible it was and would he like to read such stupidity in a book.  He wasn't upset - he knew he had done a less than acceptable job.  It is easy to let it all slide because it is uncomfortable and tiring for us as parents (and even the teachers to deal with it).  Everyone likes to say how bright their kid is - but unless their kid can prove it to the rest of the world (as we say to Sam) - it is all meaningless.  We like to rip off the bandage without any anaesthesia (sp?).  But again, I am mostly writing to the people whose children have Aspergers here.  I realize that people whose children have other types of autism may have other things to deal with.  

I want my son to be one of the success stories - and he is getting there - but it is a long, painful and hard earned road.  Every night is a new challenge - but like Prometheus we just have to put up with it.  And in the end, even he was unshackled.  

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To the original poster - get an advocate.  They work on a sliding scale.  They will help you akot more than any school official.  You have a ton of rights - but the schools won't really tell you becase the real ones cost them lots of money.

First of all, ask for a functional behavioral analysis - they will say we don't think he nees one (you are entitled by law).  even if they ay no - make them put it in writing.

ince the school year i s over, ask next's year's teacher to keep a communication notebook.  It could be as easy as a daily chart - that just list the subjects like math, social studies, reading, spelling - ours puts a happy face, a sad face, or a W (warning).  And then a short paragraph at the end of the day.  No ambiguity.  If she says Jack had a bad day - ask her/him to be more specific.  You will then learn that Jack was over reacting to a taunt or that he refused to sit with the class on the carpet.  Whenever the school makes a big complaint - and wants to put the stress of  it on you the parent - hit back.  Since it is their problem too - and you have no control over it while he is in their care - what is their solution to the problem. After every meeting or complaint by the school, and here is the hard part, follow up with a letter,  Keep copies for yourself.  It is amazing what the school officials forget - your kid is only one student at the school.  We went to court with a two year chock full of documented incidents with no letters disputing it from the school (who do you think the judge is going with).   Remember school officials are too busy to write you back - take advantage of it.


Report ever bit of teasing to the school principal.  After an incident or two (followed by a letter to the teacher) - you need to document with the principal.  If teasing is a continual problem then the letters get cc'd to the Superintendent.   And don't be afraid of being the hated ***** coming to school - I knew a mother who called Child Protective Services on the school for maltreatment of her disabled son.  Her kid is now in an 80K a year private school and she was a single mom on public assistance.  So don't think she had any money to do this - it is whether you know the system or not.  

If you have a diagnosis of Asperger's - you should be entitled to at least an aide to help him through the day.  I just want to tell all those parents out there - stop being apologetic for having a kid who has problems.   Forget about looking like a difficult parent - and start advocating for your child.  But you need evidence - which means a whole lot of correspondence between you and the school.
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