One for docs - just curious

[SueNYC]

A lot of people posting say that they have 2 1/2 year olds already diagnosed with Asperger's - but then say that the child has difficullties not associated per se with Asperger's.   To me the dx is not that important - but isn't it hard to diagnose a 2 year old with Asperger's.  They had a hard enough time with my 9 year old - and all the doctors are still a bit confused.  Is Asperger's that easy to diagnose or am I seeing the wrong people?

[annarose]

greetings

I have read some books where they say in babies with aspergers syndrome the first sign is slowness to suck milk from the mother and seaming iritability - reluctantce to be held.

as aspergers syndrome is usualy conected to things like dyslexia and dyspraxia it can be harder to diagnose and may be misdiagnosed as scytophrinia or other disorders.

by the age of 2 and a half children are usualy begining to talk and walk - my brother did not do this till much later - the age of 3 or 4 I think.

the early signs have been set out . dad ( teaches autistic and aspergic teenagers curently but has taught and lived with all age groups ) says the best people to check this out with and can be found on the internet are:
the national autistic sosiety
tony attwood
temple grandin

also look on wikipidia and www.jpk.com

every blessing
a-R

[MaryannesMom]

My 10 year old daugther is an Aspie and she sucked milk like a banshee from the get go!  She did seem more irritable with teething, and painful things like that but not just irritable in general.  She didn't mind being held, but wasn't super cuddly like my other daughter (who is 8 & still likes to cuddle on the couch!)  The things that were different for my daugther as a baby were:  she would "space out" alot.  She could talk in sentences at 1, knew all the letters of the alphabet by 1 1/2, and could read at a 2nd grade level when she was 3.  She never crawled.  She was very loud--made screech like noises as a baby.  I think it would be very difficult to diagnoses AS at such a young age.

[Sally44]

I have heard that there is some research going on into movement and how those on the spectrum tend to have difficulties with certain movements.  Alot of those on the spectrum tend not to crawl or climb as toddlers, but these movement differences are even earlier from months old.  If this turns out to be true then we could at least see babies being red flagged for further observation.  

[SueNYC]

My son liked to be held (though he was hyper), he smiled at us, spoke in full sentences at 1, breastfed, etc.  He was a bit sensitive to smell and sight - motor skills fine - he is clumsy when he is not paying attention - but I think most of these 2 1/2 year olds being diagnosed have to be pdd-nos - because there is no way they can tell if it is Asperger's or not at that age.  I don't even go with being obsessed with a toy - because a lot of toddlers have a toy fixation.

I think language abilities are the key deciders when distinguishing where a child falls on the spectrum.  My child goes to a HFA/Asperger's school with severe ADHD thrown in - and you can tell right away to which group a child falls into.  There position on the spectrum may vary - some are a bit more socially advanced than others - but there is a definite difference among the main divisions.

The Asperger's group kind of remind you a little bit like a high school parody of geeks - they love comic books, computer games and lego.  They are always building things and having conversations (and yes - they go back and forth - as long as everyone is on the same subject).  My son's best friend at school isn't into his beloved Bionicles but he has adjusted and learned all about super heroes to appease his buddy.  Sam is considered the superstar as far as being flexible there - but he is the borderline dx.  

The HFA's seem to have it a bit tougher.  My son says it is difficult to talk with them - so the school keeps the two groups separated..  I guess what I am trying to say is that the kids with Asperger's - though sometimes using words strangely - seem to be able to talk at the same rate as their normally developing peers.  In fact. many seem to have a much more advanced vocabulary than their peers.  A girl on You Tube was trying to explain it by saying that vocabulary was everything, as was analyzing it, because a person with Asperger's has nothing else to go by when interpreting meaning and that is why many of them have such brilliant analytical skills.  

Me and my husband are a bit of language lovers ourselves - and we are always throwing out new phrases to each other - and I said tell me what the "apple of discord" means.  He was stumped - but mot my 9 year old Aspie - who proceeded to give me the whole history of the phrase.   guess when I think Asperger's - I am reminded of the "little professor syndrome" which seems to occupy his school.  It is not what some people are describing on these boards.  True, they can be explosive children at times, but sometimes people also need to relax.

We met with his classmate and his father at the movies this week.  The girls wanted to go and the father was at first so nervous about how his child would react to a group of rowdy kids.  His son got along well with the girls.  After all, they were used to dealing with an Aspie personality.  He was shocked to see that the girls were being more difficult than the boys (talking in the movies, shifting seats, whining for more and more popcorn).  This couple has only one child - and I turned to him and said - they are all difficult at times - and sometimes the predictable one is the easiest to manage.  I know what he wants for breakfast, what he will wear, what he will eat, and what he expects from us.  My littlest is a hellion - a real charismatic, firecracker - who expects the world to bow before her demands.  My middle kid is the class clown - so popular that they want to use her for social skill groups as the model - but she will also have a temper tantrum (not in school) that could bring a standing ovation.  In the end I think we are all a little bit autistic when we want to be.    

In the end, I think too many people are rushing to judgement and trying to get their kids labelled when they have difficult children.  And yes, there is such a thing as a difficult personality - autistic or not.  But as far as Asperger's goes - I think it is harder to diagnose - because sometimes our kids are acting pretty damn normal.

[Sally44]

I agree.  I think it is the language/communication/social interaction problems and lack of imagination that starts to show itself.  And the autistic spectrum children are much more noticeable from the Aspergers child because of that.  When they start school they also tend to have problems with numeracy and literacy.  But I think by age 7 the Aspergers child is quite noticeable, eventhough academically they are okay or advanced, because of their 'information' storage ability and by their need to tell people about it.  I agree that managing an autistic child can sometimes be easier than my other child.  But there are times when he is stuck in a rigid belief or expectation and I can't get him to move past it and that can drive me mad, especially if we have to go somewhere or do something and he is holding me up.  His behaviour, in general, is very good and sometimes that goes against him because he tends to withdraw into himself rather than cause a fuss.  I think in school he sometimes gets left to his own devices, which usually means he does nothing and asks no-one what he should be doing and will be fiddling with something for hours before someone notices him.
I too really didn't want the label that a diagnosis brings and I felt guilty for having given him one.  I would have preferred for him to choose himself when he was older.  But unfortunately the systems are just not like that and after some considerable time trying to get support for him, and being told that they needed a diagnosis to know 'how to meet his needs', I found that I just had to follow the system.  I do find that very frustrating and often feel like I am a charicter in a Kafka novel.

[SueNYC]

The rigidity is definitely the biggest problem we have.  Creativity is not one of them.  Sam has a list of all the things we don't do - my husband decided to act of why we never have time to do them.  

Mom - "Sam, time to do your homework."
Sam - "I need a break."
Mom - "But you just had a two hour "break" on the bus.  I know it wasn't a good beak - but just for once you could have done your homework on the bus.  Think about it - when you got home you would have been free.
Sam _ " I can't do my imagination on the bus."
Mom - "Fine, I will give you 20 minutes for your imagination."

Twenty minutes pass.  Sam was told before hand when 20 minutes would be on the clock,

Mom - "Time to do your homework."
Sam - "Can't, I'm starving."
Mom - "You know that we don't feed you until your homework is done."  (Once Sam is fed he is useless to convince)
Sam - "are you calling me a liar.   I said I would do it.  I need to go to the bathroom - I have diarhea.  I ate gluten today (he is very gluten intolerant).

Mom finds Sam 1/2 hour later in bathroom reading.

Mom drags Sam back to table - but low - Sam has a Bionicle or a bionicle part stashed in his pocket.  Sam starts to do his imagination again.

Mom takes it away.  Sam starts "You think I'm a liar speech again."  It is now 6:30 - Sam hasn't eaten anything and mom is getting pretty pissed off.

SaM - "Did the girls get to watch tv afterschool.

Repeat tomorrow
One hour's worth of homework - three hours of wasted time

[SueNYC]

The system is totally Kafkaesque - Sam skipped the Asperger's diagnosis (we could have had the stretched criteria version) and was labelled with ADHD, ODD, tic disorder, and unknown mood disorder.  Sam is always being "studied" because he fails to fit any of these disorders properly - but something is up.  

We fought with the school system for years.  Finally got the "get out of jail" card  and guess what - there were no placements or programs for children with his IQ in the system.  So then, because of the red tape - you need to find a school, pay for it (50-60K a year) and then sue them.  Your only other option is to go back to a school with an aide (who just comes off a list - meaning that they aren't properly trained).  

I just heard from a friend that Sam's case is now making the Special Ed lawyer's news publications - because it is so rare for a child with his abilities to win.  Usually these cases are won because the child can't function in the classroom - not because the classroom was having trouble functioning.  Sam was happily coasting along - he just refused to do any work - but all the Bush administration (and therefore NY) cared about were student testing scores.  On paper, Sam was just hunky dory - though it took us a substantial bribe to even get him to take the state exams.  Sam, until that point, had refused to participate in class or lift a pencil for the last two years (except at home where I ABA'ed him).   The principal had begged us to home school home - and my question was why - so I would have higher standards to meet than the NYC school system when they came to evaluate him at the end of the year. Not to mention the three days of paperwork and the meetings with social workers to deem whether I could make state curriculumn.  My answer was simple - when schooling was no longer offered by the state - i would home school - but until the law changed he was their responsibility.  Or, my husband stated, when NY returned his income tax (which is either supporting a missile silo or a family of six) he would take care of it himself.  NY State did not agree to either of his options.      

The system is so unfair.  It is geared toward the upper classes in this country.  If you have the money to foot the tuition, hire a damn good special ed lawyer, and have access to the better private schools - your kid has a fighting chance.  Most of the children in NYC with these conditions are warehoused with children with severe behavioral problems (violently aggressive) or extremely low functioning.  There is nothing else for those that can't play the above game.  In most states, the parents have to bear the burden of proof that the programs the state provides are unsatisfactory (very difficult and expensive to do - usually entails a whole slew of expert witnesses).  Our dear ex- governor Spitzer luckily overturned that law before he was busted with his lady friend.   Most of these witnesses charge about $1200-$1500 a court appearance.   The lawyer - 5-10K (reimbursed only if you win), the high level testing to prove your point (another 5K) - I think we spent over 20K (not including footing the first year tuition before we settled) - the school was generous they broke it up into 5K payments per month and gave you the phone number of the banks that specialize in these loans.  Generally speaking, the state will not bother us again - we have to sue - but they usually settle each year without all the testimony, etc.  The state does everything in its power to put up roadblocks to stop us.   Last week they wanted me to check out a school for children who for the most part were mentally retarded and living in a group home (most of their parents are incarcerated).  It is a religious school and he would have to sing in a choir (we are Sephardic Jews).  As far as I know, America has that whole church state separation thing a long time ago.  Nothing against the Dominican friars who run the place but my son's religious upbringing kind of clashes with theirs.  I can just imagine my child (who for some unknown reason has become a rabid atheist these days) walking into a place with signs stating "We Are All God's Miracles".  We went to a bar mitzvah a couple of months ago - and I walked out to find him surrounded by a whole group of people and the rabbi -  huddled around him as he was intently questioning why they all had to sit through such a frivolous ceremony when their was no proof of God's existence.  Luckily, no faith - only observance is required in my religion so a heated, spirited discussion ensued as everyone praised me on raising such a fine, deep thinking  boy.  But then again, I have an atheist Orthodox husband so maybe I shouldn't have been so surprised.  

Oh the funny part about the economics of special ed, they are about to open up a state contracted private school for high IQ Asperger's - the cost is estimated at 100K /year.  Leave it to the state to spend more than private industry.  You think they would be happy - I found one for half the price (we are skipping eh summer program because a kid needs to play a bit) - but it isn't on the approved list.  

[Sally44]

I think we are all talking about our own unique children and how the system has to have set criteria.  So alot of the time you do feel like a square peg trying to be fitted into a round hole.
I think my some is autistic spectrum disorder because of language problems.  But he is very smart.  Today he was asking me about daytime and nightime and asked if the earth went round the sun or the sun went round the earth.  But he really struggles with literacy and numeracy.  It just doesn't make any sense to him.  I am afraid that they are teaching down to him because of his difficulties, rather than up to his interests and abilities.  But how can someone do well in school if they cannot read, write or do maths?
He does tend to work mainly through one sense at a time, which means he can frequently 'miss the point' because he cannot tie in all the information.  But if he is in the moment with you he has a brilliant sense of humour, currently directed towards all aspects of 'breaking wind'.  Typical boy humour!
My school options are to send him to a mainstream school with extra staff/funding for those on the spectrum.  But although I want the expertise of the staff and their experience I am also aware that it must be even harder for these schools to cater to individual differences.  There are also a number of children with behavioural issues, which my son doesn't have and I think some of the behaviour might scare him.
My other choice is for him to get extra support in his current mainstream school.  But the school