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544302 tn?1217517084

HELP!!! is it apergers or not(sorry its so lg)

I have a 12 year old son, he is extrempy clever and wonderfull in his own way, he is the youngest of 4.  From within the first few days of being born I felt there was something different about  him, he was very collicy and very hard work, only sleeping if rocked to sleep and crying if i was out of sight for even one min.  having 3 older children that all developed "normaly" I though tnothing of it and used various ways to cope with his demanding and upseting behaviour. When it came to weaning him that was a nightmare, anything that was sloppy he would jus gip at, so weaning was done on  raw carrot dry burnt toast raw apple, i took along time and up untill the past few years he would not have butter or jam on anything has never tried soup beans spagetti. has only jus started eating yogurts (without lumps) and the list goes on.  on top of this eating problem came school, he used to scream and get int a dreadfull state when going to school, not a temper scream but a heartbroke scream.  This never really changed he just learnt to cope in different ways and so did I.  His speach was a problem and he ad spach theropy for some time,  his teacher then thought maybe he was deaf  and could not read, but it turn out that he could just switch off from situations and just rememerd the books that had been read to him (just the usual short two line per page books)  when he started having spelling test etc  he could only dothem if they were read out in the same order that he had wrote them of the board,This is a genral over view f the first few years of his life, I could go on and on abouut interaction at home and sharing , noise, tuch, smell etc

Eventually we began to see someone to help us with him as he seemed very over active, obsessive and emtional. they referd us to family theropy which did not help us at all.  

I2007 my son started high school, and the nightmare really has begun.  We have to check every day that he has every things, he has to be taken to school and even then rings me when he is there and inbetween lesons and breaks.  At breaks he goes into the library as he can not cope with the norml rough and tumble in the yard, and thinks everybody is picking on him.  he can not concentrate in class because of the(normal) noises around him ec.  We completed a questionair to have him tested for asbergers, our's showed a very high score, school's however did not as we expected,( because he has fund ways of getting throu th dayand they have only known him or a sort time)  His main focus everyday is to get thro the day and if he learns anything that is a bonus, he is a very intelegent boy and this in its self is frustraing to him.  the next step in his test for aspergers was and inteview with his usuall child health coucelor and a "specialist" this was a 10 min interview and from that they have dismissed Aspergers.  So where do I go from here? from a very high score in one thing to a NO, from a ten min interview. I am not looking for a label to put on my son, I just want some answers to the behavior that is making him very unhappy and is out of his control
any help or advice would be so very welcome.  This is just the tip of the iceburg with him, there is so much more I could put but I think this is a general picture of the situation.
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Avatar universal
After reading your question if your son has A.S or not I felt really sad & frustrated for you
my son is now nine years old and was diagnosed with Aspergers when he was 6 years old, everything you have noted above sound like a carbon copy of my son, I feel really lucky as the school my son goes to gives him alot more support even though he still struggles with certain aspects he is still happy there, I can't believe that you are not getting any help, my only suggestion is to make a diary of everything you can and keep going back to your GP/specialist and insist on a proper diagnoses I know it isn't easy but you have to push for your sons sake, you are definately walking up the right path
but getting someone to listen is your biggest hurdle
Good luck for the future
Helpful - 0
Avatar universal
Your son does not have to suffer.  My son fell apart in second grade and now he is in a private school paid for by the state.  We are hoping to mainstream him by high school.  The school is kept quiet and distraction free.  He went from doing now work - to being highly productive again.

Unfortunately, to get services there is going to have to be a label.  My son has ED (emotionally disturbed).  they love that label because most parents won't agree to it and the services it will provide (thereby saving the school district lots of money). An IEP can protect your child - so think anbout it.
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Avatar universal
N ten minute evaluation is going to work unless your kid is walking out of the manual (which does occur).  My son's best friend is a full blown case - he would take only 10 minutes.

Diagnosing any form of autism can be difficult - I am still on the fence wether my own kid (as well as a whole team of specialists who have been studying him intently over 4 years) still can't decide.  Very little clinical studies have been done on these "gray area" kids that have a little of this and a little of that - but not enough to give them a full blown diagnosis (not even a pdd-nos).

So my kid has diagnosis that look like a bowl of alphabet soup turned over.  Whether his other dysfunctions are causing behavior that mimics autism at times or whether he is truly autistic is baffling.  It would have been easier for us to have the label for a services reason - but instead we are working on a hodge podge.

In the end, the label doesn't matter (except for the services it will provide) but what is important is that you understand what you are dealing with.  That, unfortunately, requires some serious testing so you can wrap your head around it.  

If ou live in America - ask for a Functional behavioral Analysis (your school will not behappy but they have to do it). ask for a neuropsych (again - it has to be approved on the CSE level but if they say no then tell them you are going to an IEP hearing for it = again it will pi$$ them off but it is your right(, also check your insurance company - with a psychiatrist note most of our testing was paid for, ask your health care company to refer you to a developmentalist....

You may have to take a trip to go to a major city to find a reputable clinical child development testing place - some of the parents I have met have driven three or four hours.  Also, if you live near a major city, check to see if they are doing studies.  I had several tests done on my son for free - by some of the top autism experts in the country (who then scratched their heads).  

Your child may also have an underlying mod disorder - if so, don't go down the Prozac road - it is scary.  

You actually have a ton of rights as far as his education is concerned.  Start by typing in special Education Rights for Disabled children or Children with behavioral problems and thee sites can give you great advice.

I would also consider contacting an advocate.  Most parents wth special needs children are son confused/embarrassed that they rely on the schools to give them all their advice.  bad mistake.  I never felt more empowered then when I had someone who helped level the playing field for us (and my husband is a mucky muck lawyer who still took months to wade through all the law codes).  It is better to have someone who usually is very passionate about the process.  Our advocate was amazing and our lawyer has a brain damaged child (she was born at 22 weeks).  He really understood our pain and frustration.  Most of them take pro bono or work on a sliding scale.
Helpful - 0
470168 tn?1237471245
Sorry, made a mistake in my post.  With gestalt he will not be able to do the same thing in a different environment or sequence etc because he will NOT recognise it as 'the same thing'.
Memorising things is called 'rote learnt'.  And alot of what they do or say is 'rote learnt'.  
Helpful - 0
470168 tn?1237471245
What was your sons speech like.  Did it develop normally, or was it delayed.  What did the Speech and Language Therapist say.  Did he ever use echolalia when little (google this to see what it means).
Usually for a diagnosis of Aspergers there is no language problems, maybe some delay and they tend to be very literal in their interpretation of language.
With autism there is usually problems with language either delayed, disordered, echolalia, appearing not to understand, big difference between understanding and use of receptive vs expressive language, problems with pronouns etc.
The way your son learns sounds very much on the spectrum eg. learning something in one way and being unable to retrieve the same information but in a different order.  That sounds very much like my son who is autistic.  He is the same with his reading book.  After he has been told what the first page says he memorises it and can then read the rest of the book.  He finds it very hard to read individual words, or if the words on the page are reversed or slightly different he doesn't know what it says.
I too find it very frustrating because my son is very bright, but he cannot demonstrate it!
Alot of the problems you mention are sensory based.  I would recommend doing a google search for a woman called Olga Bogdashina and reading an article by her printed in Autism Today.  She also has a book called Sensory and Perceptual Differences in Autism and Aspergers.  This will explain the food, noise, touch, problems he has.  It will also explain his learning style which sounds 'gestalt', which means things are learnt as a whole and not the pieces.  For example he may learn to do something in one environment, but in a different room, or with a different person, or asked to do something in a different sequence he will not be able to do it because it will appear to be 'the same thing' to him.  Does that make any sense?  That is why children with autism have to be taught something and then have to have it generalised eg. taught to them again in different situations for them to realise it is the same thing.  For example a boy had to be shown all the different signs there could be for the toilet for him to be able to understand which was the mens and the womans, because he would learn one set of signs, but when he went out with his mother, if the signs were different, he didn't know which one he should go into and would get upset.  Obviously there are all different levels of this and someone may function at a much higher level than another child, but I think you get the idea of what I am saying.
I too get the impression that my son, just does anything to get through the day.  This usually involves replaying TV/DVDs in his head and appearing deaf to everyone around him and not paying any attention at all to the teacher.
It is very common to have problems around breaktime, dinnertime etc because their time is unstructed and they need the 'structure' to know what to do.  Also with the sensory stuff it will just seem too loud, active, threatening for him.
I would look at the diagnostic criteria for Autism and Aspergers under DSM IV and make a list of all the behaviours that you think your son has that are relevant to that.  Then I would go to my GP and say you want your son assessed for Austim/Aspergers by a multi-disciplinary team that specialises in this diagnosis.  That will usually be Educational Psychologist, Speech and Language Therapist.  I would also ask for a referral to Occupational Therapist who deals with Sensory Integration Disorder.  There is usually a very long wait to see OT.  
If you can afford to do it you could get a private assessment by an Educational Psychologist, but again it needs to be someone who specialises in this type of diagnosis.  
It seems obvious to me that he would ideally benefit from smaller classrooms and even a smaller school.  He would also benefit from having his work presented in an autism friendly way and he will need specific teaching to help him learn and generalise that learnt information into new situations.  Can the school ask for input from an Autism Advisory Teacher?
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