confused mom about child with possible aspergers

[darlene38]

my child is almost 10, saw phychiatrist recently because my son had the diagnosis of adhd since age 4, while on concerta 36, he had severe side effects which were concerning to me so he saw a psychiatrist, who saw autisic symptoms and she is sure he is aperger's, i've noticed lots of odd behaviours in the last 2 yrs but thought was adhd, he is now off meds and no longer hyper 2-4-7, but when when he gets overstimulated by noise or other kids, he gets extremely hyper and aggitated, sits on floor daydreaming holds his face as if to be thinking, head has strange movements, and he plays with his hands, up to this point he never had imaginary playtime, now he has an imagination,he thinks he wants to be a girl and only wants to play with girls,will now wander onto street and not noticing oncoming cars, can't leave him alone out side for fear he will get hurt.he asks stranger about vehicles and seems very knowledgeable about them however i don't own on. he also has no sense of space, he will always be in your face, has to touch people ie: poking kids, but not to hurt them.while on meds he was overly empathetic now he has none, he blurts out peoples flaws with out any regard to hurting their feelings or he doesn't realize, this is a ten yr old who is now acting like a 6 yr old mentality...will now choose to play dolls with 4 yr old girl as apposed to a boy closer to his age..while all of this is not new to me behaviour wise,not sure how i could of missed it ..anyone with similiar situation, info would be appreciated as i am very confused and am seeking to get answers....thanks..

[Sally44]

If the click on the health page icon on the top right hand side of the page I have posted the diagnostic criteria DSM IV for autism.  I have asked parents to post examples of their childs behaviour so that there are examples of the behaviours that fit the criteria.  That might give you some ideas of what the professionals are looking for.  As you mention Aspergers I assume your child had no speech delay or disorder.  You can google DSM IV for Aspergers and see what the difference in the diagnostic criteria is.  I think it is mainly around developing speech at an age appropriate age, although there may be language processing or literal interpretation of speech.  There are also usually interests or obsessions on subjects that they know alot about.  They also seem to have a general curiosity about things.  They can have attention and focus problems for subjects they are not interested in.  That is why it is better to use their interests and obsessions to teach them.
Regarding preferring to play with girls and identifiying himself as being a girl.  It may be that he doesn't like the rough and tumble style of boys and prefers the touchy feely behaviour of girls.  You could explain to him that some boys like sports and rough play etc, but that some boys like other things and that is okay.  If this idea persists that he believes he is a girl then I think that is not necessarily to do with Aspergers.
It is common for these children not to understand danger or how they should behave differently to their mum as opposed to a stranger for example.  Again you will need to explain to him exactly what the difference is and what he should do with different people.  For example it is okay to hug and kiss your family.  It is okay to hug your friend.  It is okay to shake someone's hand if they are introduced to you.  etc.  You may need advice from Educational Psychologist about how to teach about stranger danger.
Not understanding about personal space is also very common and again you need to explain it explicitly to him.  
What kind of school is he at at present and what kinds of programmes supports does he have in place?
In the UK, Speech and Language Therapists are also responsible for Play and Social Behaviour.  So, if your child is not seeing SALT, I think you need to ask to be referred to one because of the difficulties your child has as part of his diagnosis.  Eg. not understanding personal space and how to behave appropriately with his peers and other people.
As you say you think he has alot of sensory issues, I would recommend googling the name Olga Bogdashina and reading an article by her printed in Autism Today.  This woman runs an institute in the Ukraine for children/adults with autism/aspergers.  She has been invited a number of times to come and speak to professionals and parents in our area and her caregivers questionnaire is used by our autism department.  
If you find that article relevant to your son then you can read her book Sensory and Perceptual Differences in Autism and Aspergers.  The questionnaire is at the back of the book.  When you complete it you get a rainbow sensory profile of your child, which is helpful in knowing which senses are most affected and therefore what environmental changes would benefit the child etc.  You've mentioned getting over stimulated and how that affects him.  You say he doesn't like noise, plays with his hands (infront of his face?), holds his head in strange positions (proprioceptive sense).  I think that reading Olga's book may make alot of these behaviours understandable once you see the purpose/cause of them.
Please post back with more info about how he is doing at school and how you think he is coping.

[darlene38]

he has been tested at school and he is about 2-3 yrs behind in language,but math and science is ok. but he cant print very well and can't cursive write at all, i read in asperger book somewhere that when asperger boys struggle with male relationships because they are teased etc..they identify with females more because they are more accepting, thus the more they are with female they have gender indentity issues...or that is what i understood anyway...also he seems to have no sense of being full, he is eating everything and anything like turnips he never ate that before and veggies...he seems not to know that he is full or it is possibly his compulsion to  which he has had many at age 4 it was vacuums, thats all he talked about for a time.....he is also sensitive to change in his schedule or meeting new people...doctors especially....gross motor skills are not at normal age and fine motor is below average....

[Sally44]

So is he having any speech therapy?  Does the SALT say his difficulty is a delay or disorder.  Do you think he has a typical understanding and use of speech or does he take things literally and have problems processing language.
Although criteria can be somewhat specific, people are unique and sometimes don't tick all the boxes.  If there's the problem with speech and a good SALT should be able to tell you from his speech/language difficulties whether a diagnosis of autism or aspergers is more likely.  So, with speech problems you are usually looking at a diagnosis of autism.  Obviously if that is the case your son is at the high functioning end.  However if he has the obsessions and interests then you might be looking at Aspergers.
It could be that your son plays with girls more because they are gentler etc.  Because of motor coordination/planning difficulties boys can find it hard to join in typical boy sports.  But you can try trampolinging, swimming etc.  Sports that don't involve physical contact or team playing.  Are there males in the family that he spends time with?
You mention difficulties understanding when he is full.  This is the proprioceptive sense which gives feedback to the brain about where the body parts are and what they are doing (that ties in with strange facial expressions or odd body posture or movements), but it also deals with regulation internal sensations such as feeling hungry/thirsty/needing the loo etc.  So it is quite possible that he is either feeling hungry all the time, or is simply not getting the message that he is full.
Fine and gross co-ordination problems can also be sensory or could be dyspraxia.  An Occupational Therapist is the person who should see and assess your son.
Problems around change in general are typical.  They need to have structure and routine to feel secure and be able to predict what is going to happen.  If their schedule changes, or plans have to be cancelled etc then it throws them into chaos.  

[darlene38]

his speech is good, however he takes things literal, expressions..he did have occupational therapy and they are the ones that stated fine and gross motor skill problems, a developmental specialist stated he has auditory processing issues, im in the process of testing this...he spends alot of time with my brother in law and i have friends with boys a bit younger than him, he is alot different than boys his age, they wont play with him and if they did it would only be to bully and tease him...

[Sally44]

If he has an auditory processing disorder (my son is to be tested for that too), then he is going to find verbal instructions given in class very hard to follow because his ears cannot automatically tune into what they should be listening to and they may not be able to recognise the difference between speech sounds and background noise.  I too have some auditory processing problems and if you put me in a room of people who are talking and someone tries to hold a conversation with me I find it impossible.  I cannot hear what the person is saying to me and my ears keep picking up a selection of words or noises from other people's conversations.  This isn't me trying to be nosey!  My ears literally have a mind of their own and listen to whatever they want to.  If your son has something similar he is going to need all classroom instructions printed out for him and he is also going to need extra support from a teaching aid to make sure he is understanding what he should be doing.
It is very common for children on the spectrum to play with either younger children or older ones for the very reasons you put in your post.
That is also why I suggested that any rough sports or team sports would be a struggle for your son.  There are lots of other hobbies, interests, sports etc that men do that doesn't involve having to work as a team or get involved with physical contact.  As he also has the gross motor problems that is why I suggested trampolining as something he might enjoy, but also have a theraputic benefic on him.  If you find a club talk to the instructure about your son having Aspergers and that he takes language literally etc.  Then I would also try to find something that involves one of his interests or obsessions.  What is he interested in at the moment?
I wouldn't try to get him to socialise with his peer group from the neighbourhood if they tease and bully him.
As he has fine and gross motor co-ordination problems is the OT doing work with him at the moment?  If he has fine motor problems is he having difficulty writing?
What kind of school does he go to, is it mainstream or Special Needs?

[darlene38]

yes he is having problems with printing, he can't write yet. he is in a mainstream school with lots of extra help special class, no ot yet. he couldn't tie his shoe laces till age 9 only started to read at age 8 and still can't read past grade 1, while concerta and ritalin did help concentration and impulsiveness, it brought out alot of other things like daydreaming while sitting on floor, and spinning while walking, and voices in his head, now off meds the voices are gone,but everything else is still there,i guess they were there all along and no one was looking for it, just thought it was odd behaviour, however now he is more juvenile, does not act like a 10yr old...makes one wander what these meds do to kids in long term...im just a bit confused as to how they can say asperger's at this age, and his physciatrist sees autisic like behaviours in him..as a baby he was very crabby cried all time, temper tantrums, digestive problems but he hit all the milestones at the right age, and he even spoke the english language very well by age 2 and still he talks more like an adult than a child but didn't and still doesn't fully understand the language i think...states things out of context...but to talk to him now he has a harder time saying things, and goes back and forth in a converstion from one subject to another, totally unrelated...Does this make sense to you? and i appreciate your input...

darlene

[Sally44]

Having problems with writing are typical.  You could ask that an OT checks out if he has an specific handwriting problems that would come under their remit.  You can also try typing because that comes from a different part of the brain and alot of children with Aspergers tend to move onto computers as well as continueing to practice their handwriting.  In very severe cases, where the child can talk but not write there are voice recognition programmes where the computer will print what the child says.

My son is 7.5 and cannot read or write or tie his shoe laces or brush his own teeth.  But you can have a conversation with him about the force of gravity!  So yes, there will be some things he is good at, others he will struggle at but eventually get it, and some things may always be a struggle to him regardless of how simple they appear to you.

Problems with concentration are typical.  They only have interest for things that interest them.  I have been talking today with professionals about how my son would benefit from his curriculum being differentiated to be taught using his interests so that he can concentrate and pay attention.  Impulsiveness is also common because they may not have the insight to understand that if they think something through before they attempt it they may be able to do it better.  Daydreaming can be expected if the class is doing something that is not interesting to them.  They will just switch off and daydream about nothing or something they like.  Spinning is a way of stimming, which is a repetitive movement that satisfies a sensory need.
I've got to go out now, I'll post about the rest later.
Have you looked at the Health Page yet?

[mtgoat911]

i do not think children with aspergers should take speed/concerta/adderal/ritalin, this will exagerate his need to be in a fantasy world and make him terribly nervouse
try clonidine, attarax...be scared of sri's, my friends autistic son was on paxil and it placed his fantasy world in real world danger, he climbed up on the roof and wanted to junp off because he thought he could fly, and i took prozac when i was 8 or 9, that drug caused me to feel paralized on the right side of my body, i layed in my bed not able to move with my parents downstairs
doctors have no clue how medication is going to affect your kids, so be prepared
i suggest that all parents try whatever pill the doctors give them, some will argue with me here, but i will remain strong with my opinion, i have been on atleast 40 different psyc. meds, and my parents never even asked me how i felt, they acted like these pills were freaken baby tylenol, psyc. meds are strong drugs, infact i felt no difference in cocaine and concerta, so if you will not give your kids cocaine stay away from uppers to help your kid concentrate in school, dont believe me, calculate your weight versus your childs, take the amount indicated for your weight, see how you feel
not trying to be mean to darlene, infact i admire the fact that she is looking for help
just be careful with the speed, i had a melt down last monday at the dentist office after getting a novicane shot that had epineprene,
i am not a doctor just an adult with aspergers who was diagnosed with adhd and put on ritalin, and then a long list of stuff
i am not even going to talk about what some of those drugs did to me, it was horrific
i have a 9 yr. old who is in the same boat as your son with the school thing, i fought and got him into special education classes
i started having problems in school from day one, by the time i was in 4th grade i wanted to kill myself because school was so hard, eventually i just gave up, then as an adult i went back took the GED test, spent 2 years at a junior college, tried a 4 year university, the auditorium classes were too big, i kept getting lost and could not find my classes half the time, so my guidence teacher helped me find a job i would life and helped me get into a tech school, i graduated 5th in my paramedic class, i love emergency medicine so i did well in that
a couple of things you can do is have the school test for aspergers, i can give you information on a parent advocacy program that deals with all school systems in the US, and if that does not work, try an alternative school or home school
like i said i battled the public school system for 2 years, all my sons test are verbal, there are 10 kids in his class and 2 teachers, he is mainstreamed for science and social studies, when he leaves the class room an adult is with him, before i fought the school they lost my child, he was found on a busy 4 lane street!!
school is dificult for parents with special needs children, i still wonder if i should be home schooling??? i am going back to school to take classes that willl help me teach my son if it comes down to that, i hate school, i never wanted to homeschool, right now i am helping my sin with 30% of his school work at home, but i need to be prepared for 100%
its draining, and helping them keep up with school work is a full time job!!!

[Sally44]

Again, I think you need to look at the criteria for a diagnosis of autism or aspergers.  Being able to speak and appearing older than their years 'the little professor' syndrome can be common in aspergers.  It indicates using very grown up words and phrases appropriately, but they have difficulty understanding and processing language.  My son is assessed as age appropriate for expressive language (7.5 years), but is 3 years delayed with receptive language.
As for medication, I think there is a much higher tendency to medicate in the USA than in the UK, but here it is increasing too.  However, after some years, you are now in the position of finding out that maybe the main diagnosis should have been Aspergers rather than ADHD and you are right to say that no-one knows the long term effect of these types of drugs on children.    
I don't medicate my son.  I do know some parents with ADHD who have children with ADHD and they are both on medication.  I think it depends on what you are trying to achieve.  Personally, I would rather my son was in a special education school that specialises in the types of difficulties and abilities that those on the spectrum have, rather than medicate him to try to keep him in mainsstream school or to make him less of a problem for the teachers.  If the child or the teaching staff cannot cope in a mainstream school, then maybe that isn't the right place for him.  
I suspect from your posts that you are now surprised and upset to find your son has a different diagnosis and your confidence in the people who diagnosed him has been badly affected.
All of the things you mention are familiar to me as being on the spectrum, and these types of difficulties will remain with him for life.  He will learn and develope and achieve things, but there will always been this uneven ability where he is quite able and capable at some things, but really struggles in others.  He is obviously higher functioning to be doing the things he can do and the fact that he is verbal.  Aspergers sounds most likely, but sometimes children can have a foot in both Aspergers and Autism.  
I think you need to find out more about Aspergers/Autistic Spectrum Disorder and join a parent support group so that you can meet other families in a similar position.  It will also give your son opportunity to socialise with other children who are similar to him.
From a support in school perspective, those with a diagnosis of Aspergers tend to get less support because they are considered more capable.  If there is doubt as to which diagnosis he fits, then you could go with an autistic spectrum disorder.  That would give him access to more supports in school.  I would also look at getting a full multi disciplinary team evaluation and I would seriously consider whether his present school is capable of meeting his needs and helping him meet his potential.  I presume you are in the USA and therefore I don't know how your school system works.  I would recommend you contact the National Autistic Society in your country as they have parent helplines and educational support helplines that will be able to tell you what your options are.
Your son is now 10.  In the UK that would mean he would move to a secondary school (11-16) in a years time.  Do you think he would cope in that environment.  If you have concerns about bullying and teasing then that environment might not be appropriate for him.  But you will need to get things rolling now, and as I mentioned earlier it might be better to run with a diagnosis of autistic spectrum disorder (if professionals see both Aspergers and Autism).  You already know that any diagnosis can change!  So if it does turn out he is Aspergers that can be altered at a later date, but in the meantime he will have had access to more support in school.

[darlene38]

his differential diagnosis is aspergers pdd-nos still undergoing lots of tests though, they want him back on meds that gave him severe side effects with prozac or resperidal to combact thoughs..now off meds they are seeing a significant learning disability, but thanks for your info appreciate it

[SueNYC]

They put my son on Prozac or six months - it was beyond disaster.  He went on Tenex for a while - which helped his mood - and now he is on nothing (he is 10).  He became overwieght on Prozac (and before he was super skinny). He developed an uncomtrollable urge to eat.

Good luck.

[Vanagew]

After reading this I can only merely guide you to an answer, but the symptoms you have described are that of severe Aspergers Syndrome (along with ADHD) or full blown Autism. It is important to note that those people with Aspergers Syndrome/Autism do not show a consideration for people other than themselves, that is because they can't. Hand flapping is a common trait for those with Aspergers/Autism (like myself) and when overstimulation occurs, those with Aspergers/Autism try to remove themselves to a quiet place. If they cannot remove themselves from those situations, generally they will throw tantrums or become violent or obstinate.

Associating with younger children is common, and I'll admit that I did that too. The reason for this is usually related to the developmental stage of the child, in the case of your ten year old, he will associate with those he feels accepted by and where he can fit in. This is often the case especially considering that younger children are less worried with social differences.

If your son has Aspergers, then medication will ensure that some normality in life can continue.

[Vanagew]

Sorry, the previous post was an answer to your questions.

[MJIthewriter]

Has not checked out websites like wrongplanet.net.... A lot of what you say may be true to yourself and others, but to make a generalization that all people with aspergers can't show consideration for other people is setting up for misconception. True it may not be first nature, and it may not come naturally, but I have a feeling more often than not many are considerate of others but may or may not know how to show that they are considerate. It may take learning _how_ to work the process of relating thoughts of others to personal experiences to their own personal experiences, but when the method is learned first, and the process is understood, it becomes easier.

It's kind of like that with empathy.  I believe quite a few autistic people feel empathy as they mature, but may or may not know how to express that they feel empathy. Or they may feel empathy but not identify their feelings as being related to empathy.

A rose by any other name is still a rose, right?  Same with feelings, only it makes it a bit more frustrating if one doesn't know what to call the emotion they feel at a given time.
--------------
As far as medication goes... I grew up without taking meds...  To give a better opinion I'll have to look at the op. I'll warn against anything that could cause Tardive dyskinesia. That's a very serious concern because it is irreversable and uneccessary damage...
http://en.wikipedia.org/wiki/Tardive_dyskinesia

PS sorry to attack a fellow autie/aspie, but it goes to show that autism is not consistent for every person... Your mileage may vary.

[darlene38]

had to put my son back on meds, he is getting aggressive, im finding that one minute he is fine the next he is trying to hurt people, he does not seem to understand that people need their own personal space and he is constantly in your face...he will pick and poke and tease people and not get that he is hurting them..its like he is getting overstimulated or something, his senses are acute and cant stand noises. some of this was apparent before but the concerta helped it.or maybe it wasnt that bad, now i have to restrain him to get him to calm down, i beleive im in for a long hard battle, he is a 10 yr old who without concerta or stimulates to help him focus can't read or add 2 digit numbers, his memory is not good, he is 2-3 yrs behind in school, i guess im looking for answers as to how he can be mild for years and then by 10 he is worse, does it keep getting worse...? to note he is on concerta 36mg to help his concentration and will be on respirdal next week to combat the other symtoms..

[Sally44]

If he is getting over stimulated have you tried dark tinted sunglasses (or have him assessed for Irlen Syndrome), and also wearing ear defenders (the type the DIY store has to protect workmens ears).  Overstimulation usually comes in first through vision and sound.  If you try the sunglasses and ear defenders it may help him not become overstimulated so quickly.  It is worth a try to see if it helps.  Another thing I found helpful was for my son to have something to hold.  It could be a small cuddly toy, or a piece of playdoh, just something for him to hold and squeeze.  
My son wore his glasses and ear defenders for a couple of years, and now he seems to be more able to regulate sensory stimulation than before.  If you consider that he maybe bombarded with incoming sensory information all of the time that he cannot screen out or regulate you will see how possible it is for him to get overstimulated very quickly.  Try the above solutions as they are relatively cheap to try and if they work consider taking him for Irlen screening as well.  Auditory Integration Therapy is also said to be useful for those with acute hearing.

[darlene38]

boy this is confusing, my son just finished his pychological testing and he still scores very high for adhd, but there are still the asperger traits.but all the testing has not been calculated as of yet, so chances are his diagnosis will be asperger's pdd nos and adhd...the concerta for what i said is working is only helping concentration and hyperactiveness, it has been brought to my attention that he is now so intense that anxiety is higher, so now his physchiatrist wants him only on risperdol which is supposed to help not only attention but his spacial issues, his repetitive motions, hand flapping,etc...his mri results came back normal, so now i look loopy along with my son....LOL, cause i told my doctor that he was better in the areas that drive me nuts, however it has created and made other symptoms worse...

[enzymelover]

I don't have a lot of time right now but I have to at least leave you the names of a couple of books I found extremely helpful and eye opening for my son. The first is  Biological Treatments for Autism and PDD by William Shaw Ph.D.  The second one is  Enzymes for Autism and other Neurological Conditions   by Karen DeFelice  
You can look them up on Amazon.com  There is sooooo much that can be done for these children through Organic Acids testing and nutritional supplements. Amazing behavioral changes. Correction of digestive dysfunction.  
I know it's hard to believe that something as basic as daily nutrition can be so incredibly life-changing for these kids, but the results are worth the time it takes (and the cost of the tests) to see your child happy and living a healthier, more "normal" life.
Read the books, and believe. Your children deserve it.
My son had many similar and identical symptoms, but after his nutritionist tested him for amino acid deficiencies, organic acid metabolites, food intolerances and gastrointestonal function, we started giving him the supplements he needed based on his test results, and most of his issues just went away.
Unfortunately for us, we also had an MRI done and discovered a pituitary tumor, which is causing hormone loss, with the resulting symptoms of fatigue etc. (He is taking replacement hormones).  We will be dealing with this issue now, and continuing the supplements as needed.
Do check out those books.  Call a nutritionist and ask about urine organic acid testing. Tell him/her your son's symptoms and behavior and see what they recommend. You won't regret it.

[mtgoat911]

those concerta pills are going to exagerate the aggression, my parents allowed my developmental ped. put me on a drug similiar to that when i was a child, i am still angry
have you taken concerta?
i know that risperdol is becoming a common tx for asp. kids
all i can say about that it to be prepared for your child to gain 100 pounds
this is coming from personal experience, not wanting to upset you
just try these drugs before you give them to your child
i learned at a very early age that medication/pills can make me better, i believe my addiction to drugs started as an addiction to pscy. meds
i do not give my asp. kids narcotics or anti-depressants, i give him melatonin at night if he has a metdown during school i bring him an adderax not adderal
you need to remember that giving an over acting child speed will not reduce his energy level
this makes no sense

[Rach67]

We have just gone GFCF with good results, also try http://www.fedupwithfoodadditives.info/ a diet developed by the Royal Prince Alfred Hosptial in Syndey Australia.

It is recommended for Aspergers, Autism, ADHD, excma, Asthma, sinus and behavioural problems in children.  for Autistic symptoms you need to go GFCF which is the full version of the diet (a simplified one including gluten and dairy exists).

We have found this diet helps with agression and hyperactivity, but my son still needs a low dose of Ritalin to concentrate at school.  Going GFCF recently seems to have had good results with aggression, bed wetting and anxiety.

We no long avoid the full range of fruits and veges indicated as a problem, my son seems to have outgrown these intolerances (he had a bacterial overgrowth in his bowel as a toddler, caused by fructose intolerance, which he outgrew at around 6 or 7), but additives still cause problems.  Lots of antibiotics can mess with digestion, and food intolerances are the end result. Its complicated but google "leaky gut syndrome".

Ignore the zealous nature of the material on "fed up" - it may or may not help (your world won't end if you don't follow the diet, despite what they say).  The material on additives is very useful though, they have lists of ones to avoid.

[darlene38]

happy to report that my son is doing better, however, the concerta 36mg along with the .1mg clonidine-for sleep, does not help him focus according to school,so his md added prozac 10mg and boy what a difference, all the aggression, tics made worse by concerta is gone , and he reports he is no longer feeling angry, md's goal is take him off concerta and stimulants all together. he still has severe learning disabilities but with the focus now improved he can actually concentrate better..i was worried about prozac but im trusting my md, and so far so good. my son is no longer depressed about being different than other kids his age, he is no longer taking tantrums , or yelling at me out of frustration, he can now follow simple instructions, he is starting to understand that he has special needs, and his school is getting him a laptop with speech recognized programs to help him with his reading and printing issues.dx is asperger's pdd-nos with adhd..my frustration level was so high it wasn't funny and now i enjoy being with my child..i don't have the option to not medicate my son, his symptoms are too extreme with out meds,( he would be suspended from school daily or sitting in the office) and my son is a tricky case according to md, but at least he is better now, and hopefully his ability to learn has increased, i have read everything about asperger's and what i see on this site,very informative not everyone will agree to medicate their child, and i am not advocating meds for kids but some kids like mine need extra help...my son is also in therapy for behaviour modification, and sees a psychiatrist regulary now along with pediatrition...

[Sally44]

I'm glad things are working out better.
But remember to find out what your son's educational rights are, because there may be a time when meds are not working, or inappropriate, or he would need such a high dosage of a combination of drugs to remain mainstream that it would be worth knowing what your educational options are.
If your son's behaviour is such that his current school cannot cope (at any time in the future), you need to know what your options are, what schools are out there, which ones are appropriate for your son, what can your State be required to fund from an educational point of view.  For example, if your son cannot cope at school and the teachers cannot cope with him, that is not your or the school's fault.  The State has to be able to provide appropriate schooling for your son by law.  If they don't have it, it can mean you have the right to start looking at private schools and the State pays the bill.  
There are some very good private schools out there that you may have access to, but you just don't know it yet.

[darlene38]

well the school doesn't really know how to cope, as they rely on him being medicated to keep him calm.i am in the process of getting help with his education, there are no private schools where i live...i live in ontario, canada, in a small city where there is not alot of help..im noticing...without medication my son doesn't function very well, i saw this in abundance for the summer when i had to stop meds, it is aweful, have never been so frustrated in my life..but now things are alot better...i am noticing though that  while these meds are working it appears only for a short term. he seems to outgrow meds very fast...which then becomes an even bigger issue. stimulants like ritalin and concerta, no longer work on their own..school still says he has focus issues, but he is on alot of meds and im not adding more for them...but i think that the class size is to large for my son, so my son's case manager is sending someone to his class to investigate and then they will see if he needs special placement, all the testing was done over the summer so i will see exactly what the diagnosis is right now only have differential of asperger's pdd nos with adhd...for a start he is getting a laptop for school bought by the school board with special programing for his reading disorder, something to note though...i was reviewing his report cards from junior kindergarten to grade 3 and he was on ritalin for adhd at that time and over and over again they state he is inattentive and disruptive to the class and fidgety...for whatever reason stimulants in the correct dosages don't work on my son, but larger doses have severe adverse effects which is not an option...have you ever heard anything like that?

[MJIthewriter]

I'm finding right now as an adult (I grew up being without meds) when trying medication I need considerably LESS than what is perscribed. I tried Welbutrin, but any more than the lowest dose, I suffered bad constapation and started getting really bad IBS like traits.

Now I'm on an SSRI (Celexia-  generic version) The directions were to start off at half a pill... well I tried that but half a pill left me with a bad headache, feeling just a little out of touch with reality even if it did calm me a little and was a bit sedating... The seditive effect helped me go to bed earlier but it also made me tired even more so throughout the day.

I can't imagine taking a full pill if that's what half a pill does.  So I'm staying on 1/4 for now...  But I do notice I'm still rather moody, but I still think it's better than nothing and better than a higher dose. I'm riding it out to see. It's still early in the process and I'm not fully sure how much or how little it is working.

This may be something to think about. Perhaps it could be he needs less than the recommended dose.

BTW I remember in a confrence someone with autism who benefited from prozac. She took it at a fraction of a dose required for depression and that amount worked ideal. Any more or any less she found bad.  She would have ups and downs but found it good to keep the dose the same.

If the over-crowded classrooms are bothering your son, that issue needs to be addressed first. With my emotions I find some things, no medication int he world can resolve. If I feel like I've been hurt or if I'm worried about a friend, or if I'm disappointed about not being in an art show (which I need to post an update that I will be in after all), I can get emotional over these things, but for my self that seems to be "normal"  That "normal" is what is for myself, not other people.  Forget being able to feel less intense over something without it affecting other things in a less positive way.

If I take medications to not feel those feelings, then it affects me in all areas of emotion and thinking. It can be uncomfortable. I did not like feeling even just slightly out of touch with reality with half a dose... I rather keep my semi-chaotic internal thought stream and feel "normal" to myself than to have that all silenced and feel like I'm dreaming. The feeling of being in a dream can be especially dangerous...  That's why I don't want to take a higher dose. That's when one can worry about whether their child will hop off the roof or not...

[Sally44]

I'm sorry but I don't know anything about the medications.  The only thing I have read on the web is that if stimulants are not working for a child with ADHD, then maybe that is not the main problem.  From looking at ADHD and Aspergers symptoms there can be alot of cross over and the fidgeting, lack of attention/focus etc could be all down to Aspergers and not ADHD.  The best way to get someone with Aspergers to pay attention or be motivated is to use their interests and teach all lessons using their interests to draw them in.
I would definately recommend getting in touch with the National Autistic Society in Canada.  I would also advise you get some legal advice on Special Educational Law.  The NAS may have some advocates listed on their website.  You could pay a set fee for some initial advice.
If your child is struggling in a mainstream school they may give you the option of a State run school for children with behavioural problems or with learning difficulties.  You may need to get private reports if you go down this route, but it is worth it to have on paper what your child's cognitive ability is regardless of their learning difficulties.  It is a totally different scenario from a child being at least of average intelligence but being unable to function in school because of a, b, and c, as opposed to a child that has low IQ.  If your child is at least average cognitive ability, then a school for low IQ learning disability is not appropriate for him.  If his behavioural problems are reduced by a more appropriate setting then a school for Behavioural Problems is not appropriate.
You also need any report to contain information about whether environmental changes will help with any behavioural difficulties.  That might be smaller classes, plain classrooms, dinnertime clubs to reduce anxiety about socialising, laptops/scribes to record work for your son etc etc.  If he is interested, motivated, able to understand what is expected of him and his workload is structured to an extent that he can complete it independently, then that will reduce alot of his anxiety.  
Once you have all that evidence on your side you may find you have the golden ticket to get him in somewhere private.
Although you say there is nothing around you, start looking.  I only recently discovered there is a world famous Private School 45 minutes drive from my home!
It may be that if you go down this route it may be a boarding school.  Don't rule it out.  Look at the options and see how your son responds to them.  If he were to change school they usually go for a couple of days assessment to begin with.
My son looked round this Private School and loved it.  It has both full/Pt boarders and day pupils.  He wants to board (but not an option).  I felt a bit hurt by that, but that doesn't mean he doesn't show his love/affection towards me because he does.  So, I turned it around and thought, this is really great that he has found a school he likes so much he wants to live there!  We still have the tribunal ahead, so I don't know if we will get it.  But even if we don't the reports will mean that all that information will have to be incorporated into his Individual Education Plan.
I know it's hard to even consider doing anything 'extra' when you are just coping day to day.  But start to make a few phone calls.

[darlene38]

i agree with your statement that if stimulants don't work on child then maybe adhd is not the main issue, and that is now what im thinking..i thought his focus was better but it's not, an example of this is: he had to 30 min of subtraction questions (4 digit numbers) well i sat him at the table and explained this to him, and he could not do it. he only subtracted the last number on 2 questions, and then frustration set in, his school is not working on a program for him so now it's time to get tough...i am pushing for my son to get into another school which has a more specialized program for devin..in canada how it works is ; if his pyschologist recommends something then the school board has no choice but to follow it , i have found an autistic advocate who deals with aspergers as well and he  will ensure that his recommendations are followed..and i now beleive my son's adhd is not the main issue. his current dosage of concerta appears not to be working at all, so now i will have to take him off that and the school will now have to deal with the issues that arise with a better program, my son is a tricky case im seeing how that is now..because while when he first started with the concerta36mg, prozac10mg and clonidine 0.1mg i thought ok now we've figured it out, but yet again they are seeming to not work all that well however the prozac is helping with his anger, aggression issues, and anxiety. happy to report though that im not so confused anymore, reading things on this website, has helped put things into perspective for me, and seeing his psychologist today, will have his full diagnosis finally..

[Sally44]

I'm so glad you've found an advocate.
Push for the best appropriate school and support programmes and then see what medications you need.
Anxiety is a big problem with those with Aspergers.
Any medications just try to use those that have a good medical history with them.
It is very usual for children to have a mixture of traits or more than one diagnosis.  It can take a while to figure out which is the 'main' one causing the difficulties, and what supports will make a real difference.  It is not an easy task to do this and that is why typical mainstream schools just can't do it.
In an ideal world you would want your child to be in a school that understood him and could differentiate his work in a way that he can access.  There would be other supports and structures to help organise him and reduce his anxiety in school such as visual timetables, daily schedules, dinnertime clubs etc.
In that type of environment he will perform much better.  When he does get upset or have a tantrum they are also in a much better place to a) have something like a quiet room where the child can go to calm down safely and b) they can begin to teach the child how to monitor and recognise their own emotional state so that as they get older they can learn to use these supports themselves ie. request the quiet room 'before' they get too upset/angry etc.
That is a much better outcome than medicating a child so that the teachers can cope with him in a typical mainstream classroom.
Let us know how you get on.

[Sally44]

Regarding schools, the best indicator of whether they are able to provide for your son is how many other children in that school also have a similar diagnosis.  At my son's current school there are about 5 in each class, with one class totally for children with ADHD/ASD.  They also have a specific autism unit attached to the school.
I would also recommend you get in touch with a parent support group to meet other families in a similar situation.  Try to find one that socialises together as it will be an opportunity for your child to meet other similar children.  You should get lots of advice/information from this kind of group.  You could also find out which schools their children go to.

[darlene38]

thanks for your comments, i will post when i am done today..im so nervous as to what they will say about his diagnosis and at least i will today know what i am dealing with...finally. that is a good idea, thanks , for me to teach devin that when he feels out of control to go to a room that's quiet and try to relax himself, at this point in time he just acts out and doesn't calm himself down, and needs my help but i am not always there every minute of the day..

[enzymelover]

Hello again!

Hey I thought of something simple you could try with your son that might help with attention problems and hyperactivity. I will try to explain this so that it makes sense.

A large percentage of kids with ADHD and behavioral problems have an impaired ability to detoxify various compounds and substances from their systems. For some reason, their sulfation pathway is blocked, or suppressed. If the sulfation pathway is suppressed then drugs and toxins can build up and cause symptoms of hyperactivity, aggression, lack of focus etc.
There are a couple of things that you could do to find out if your son has this problem.  You can ask your son's doctor to do an Organic Acids test and specify that you want to test for sulfate. (If for some reason your doctor brushes you off, says it's not relevant, etc. a nutritionist can do the test). This is a urine test. (easier on the kids than a blood test).

If his sulfate level tests high, then the pathway is very active. Good.
If low, then his liver's ability to remove toxic compounds (includiing drugs) is not functioning properly. This would explain your son's reaction to regular and elevated doses of medication. If his liver can't get drugs and other compounds out of his system fast enough, they build up and irritate the brain and cause all sorts of symptoms. It's fairly simple to find out if your son has this problem.

If you think this sounds possible, the easiest thing you can do is to buy a box of Epsom Salts (Magnesium Sulfate) and have your son soak his feet in an Epsom Salt bath while watching TV, or whatever your son will agree with. Follow the instructions on the box. Magnesium Sulfate will replenish sulfur pathways, but too much magnesium can be harmful also. Many mom's have reported that this really helps with hyperactivity.

The amino acid Taurine also helps restore the liver's supply of sulfate.
Oh, and there's also a magnesium sulfate cream that's easy to use, but much more expensive than the epsom salts.

I hope this info helps. I certainly won't berate you for using medication to try and help your son, but I do think it's important to test for organic causes of behavioral problems, to find out what's really going on and put you treatment efforts on the right pathway (no pun intended).
The urine organic acids test is so VERY revealing of conditions you would never guess is the problem.

Well,I guess that's all I can say.
Good luck to you and your son.

Judy

[darlene38]

devin's diagnosis is ADHD NLD (NVLD) , which has to do with the right hemeshpere of the brain not working well, but still not sure of pdd-nos till i get the formal report , and it also fits why his meds for adhd are not working to its full potential. now doing clinical trials, and if it is the same with or without stimulants, he won't take them anymore...also has anxiety disorder, so now my son is comorbid which makes things even worse, however as the doctor outlines her recommendations, my son will now get the right kind of help at school, with computer , one to one learning, no french classes and homework. he is now going to get social therapy to get him to understand being around other kids,NLD OR NVLD (same thing) is similiar to aspergers,so  i guess im in the wrong forum, thanks to all your info was very helpful.

to note: confusion is gone because i now know he fits all the criteria for NLD, he scored very high, his math is only at a senior k level, imagine his frustration when teacher sent him home with subtraction of 4 digit numbers...

THANKS TO ALL

DARLENE

[darlene38]

i will talk to his md about it, because all the md's are confused as to why i say that his meds last longer , they say concerta wears off after 12 hours i say it doesn't and they have this puzzled look on their faces. and they also say that his concerta, when he stops taking it should be out of his system right away but it takes about 3 weeks till his adhd behaviours come back and are full blown...thanks for your info i will have him tested...

[enzymelover]

Hi Darlene,

I have one more idea you might want to try, also a simple thing.  You said Devin is behind in language, and the right hemisphere of his brain is not working well? Is he also having trouble with writing?

I don't want to be pushy but when I come upon things like Brain Gym, and see the incredible results people are having with it, I actually get excited about it, and I don't get excited easily!

Brain Gym is a program of exercises and body movement that helps the two hemispheres of the brain communicate better with each other. These exercises integrate brain function, and have helped huge numbers of kids to express themselves better in writing, speaking and more.

This is a fantastic program. There are teachers who use Brain Gym in their classrooms, so if you decide to try it and have good results you might be able to get Devin's teachers to do this too.

You can get books about Brain Gym, written by Paul E. Dennison, Ph.D
and do this at home, but there are classes, scattered throughout the world. There might be one near you. A class would give Devin an opportunity to make new friends (while doing silly, fun stuff).

There is a very inexpensive Brain Gym book on amazon.com ( I think it was nine dollars) and I'm sure they have a website.

Brain Gym works. The evidence is overwhelming. It works with adults too, not just children. It might be fun to try it yourself and see if you benefit in any way. We all need help with our memory!

Good luck,

Judy

[Sally44]

yes, brain gym is a very positive thing to try and it is proven to have postive results.

[Sally44]

NVLD is a new one to me.
The criteria sounds very similar to Aspergers.  
The only difference I can see if that they tend to be verbal, without the comprehension behind the words.  But that could be said of Aspergers (but not autism).
Out of interest, do you know how they differentiate between the two diagnosis?

[darlene38]

my son is verbal and can talk your ears off, he has found alot of ways to ask the same question over and over he also takes things quite litterally, like when i said not to feed my nephew too much before supper, i said she would have a bird, well...he said " but i don't want to go to aunties if were gonna eat birds....he talks like an adult big time, but doesn't catch the meanings...he has visual spacial issues, i am quite confused still as he fits all the criteria for this nvld and i don't know what the line is, she didn't explain that but she did say she is going to look very closely at this to make sure there is no connection to aspergers. but she was concerned his non verbal learning on the graph she gave me was too far a space between the fluid reasoning.from what i understand other than that i have no clue....i can't even get into a forum for this.....

[enzymelover]

Your son is verbal, and was diagnosed with Non Verbal Learning Disorder? I'm confused too!  Doctors like to come up with names for a specific set of symptoms, to classify and quickly identify the symptoms involved,This is great if you're dealing with a genetic disorder, like Down's etc. but so many symptoms can affect people differently, from person to person, depending on so many different issues, such as digestion etc. Not every set of symptoms fits into an already established, and named condition. So when enough people show up with the same set of symptoms, same test results etc., the symptoms get a name and voila! A disorder is born.
I hope that wasn't too confusing.
My point is you can have symptoms that are a little bit this disorder plus some of that disorder etc. Everyone is unique. I know it's important for insurance purposes and school and legal issues to pursue a diagnosis, but many people have to accept a diagnosis that just doesn't quite fit. And of course, "until all the tests are in" sometimes a diagnosis is just plain wrong.
We need to find doctors and therapists who can tell us how to heal, symptom by symptom, while we are waiting for the picture to become clearer.
Sensory sensitivity has only fairly recently been officially recognized as Sensory Integration Dysfunction, even though the parents and therapists who became familiar with the symptoms have been calling it this for many years. And of course there is no one treatment or medication for neurological problems like this. Many approaches together help eliminate the sensitivity symptoms and integrate brain function.

I guess what I'm trying to say is don't let helpful treatments get held up for lack of a true diagnosis. But you already knew that, didn't you?
You've been doing a terrific job for your son. I admire your efforts. Parents are powerful people. We have the strength to make good things happen.

Judy

[darlene38]

non verbal learning disability  is unique where the right side of the brain does not work properly, when it first came out it was thought to be a dysmylenation of the white matter in the brain, consider that 65% of all of our communication is non verbal on the right side of brain , were verbal communication is on the left, so when there is nvld,the left side is left to work alone at times instead of connecting properly ... where we get body language my son  has never, he has to be taught why people make certain motions with their bodies with verbal communication.. it includes math disorder, reading comphrension, deficientcies in time and space, fine and gross motor skills ,printing because of visual spatial issue, social deficits, and many others, beleive me ,i didn't take this lying down, but when i started researching this i went omg it fits him to a t...because he has an awefull working memory, most of what we learn, new things, are stored in short term memory and it becomes long term memory from repetition, well my son's brain doesn't store short term memories, if you thought of your phsyical head and long term memory is at the back where my sons only goes half way, example is: my son will tell me things daily that he already told me for the last week, he is telling it for the first time again ,like he forgot, and when he is bullied, he forgets and next day wants to be friends with this kid. i now see all the signs were there very young, my son talks well but misses interpretations and takes things very literally, doesn't get jokes, he will actually ask the same questions over and over, and when someone tells him to stop, he finds new ways to ask the same questions.

he is 10 yrs old and until recently i couldn't put my finger on why he was so unlike other adhd boys, he fit adhd but only to a point, whereas when he was younger it was very apparent, or was it, because it appears his brain is taking a downward spiral and very quickly like it stopped working,  without extensive therapy and being taught how to access parts of his brain that he doesn't usually use, he won't be able to get past grade 6, this usually happens about age 10yrs where there is less one to one at school and so they are left alone more, and it becomes more pronounced because they start to fall apart mentally, noticing that they are different however they were born like this., my son is about the age of 5 years in school, low grade one level in all subjects where he should be in grade 5

keeping in mind by the age of 2.5 yrs he could speak the english language extremely well, which is also part of early dx which does not exist because these kids adapt very well , learning complex speech that they don't understand at this young age...is an early coping mechanism. this disability is 100% nuerological and not alot of people understand it or even know about it, but it runs parallel to asperger's to a certain point, then separates...

nvld doesnt  respond  to stimulants or meds, however my son is also adhd, so i could never understand why the different stimulants don't work all the way with my son, well this is why...to date my son is on a clinical trial to see if his concerta is actually working, when he went to school today without it the only complaint is that he is overeating and ate all his lunch at first recess...they saw no change in his behaviour, so i am hopefull that he will not need stimulants, but he is on prozac as well for anxiety and depression which may be relaxing his hyperness,caused by him not thinking he is normal, he actually wants to be someone else who doesn't get bullied, it breaks my heart to see him just stand in one spot with out moving because its like he is lost in time and space..he can't be moved around with his sitters, he can't handle changes in routine, it's like he becomes psyhically imbalanced...

hope i haven't confused you too much, it's very hard to explain, but they say its more common that is thought of, dx from extensive testing ..

[Sally44]

Can brain communication between the hemispheres be improved with physical and mental exercises?  I know someone has already mentioned brain gym.  But I wondered what kinds of therapies have been mentioned to you and who would do them.
Regarding memory, does he have any long term memories or is it like he cannot hold anything in his memory.
It sounds like he may need a special school as his ability to cope may well lessen as he gets older.  What schooling options do you have.  Is there a support group for this condition.   I think it would help you enormously to meet with other families, especially as their children may be older and you could get alot of information and advice from them.
But well done, for pushing to find out what was behind the fact that he wasn't fitting the criteria.  I agree with the other posting that alot of children are a mixture of traits and disorders, but that is easier to see than a child who is a contradiction.

[enzymelover]

    Thanks Darlene, I understand now. You explained it very well. Wow. Such a difficult condition to have to grow up with. I do believe Devin can improve however, and that his brain will find ways, with time and therapy, to function and process information better.
    Brain communication between the hemispheres can be GREATLY improved with physical and mental exercises. Of course, a lot depends on what kind of damage, if any, the brain has sustained, but extremely profound changes are possible.

    I have another book for youuuuuuu.  It's called  Smart Moves  Why Learning is Not All in Your Head,  written by Carla Hannaford, Ph.D.  It explains brain function in an easy to understand way, and why physical movement is so HUGELY important to brain development. Lots of examples and the science behind it. For instance, she mentions a connection between children with speech delay, toe-walking and shortened calf muscles. Exercises that gently force the heels down to relax these muscles can get these kids talking in a few weeks. (page 180)  In another chapter, on the importance of touch, children who were not able to control themselves in the classroom were gently touched on the shoulder at times they were "being good" while saying positive things to them, and within two weeks these kids were behaving and doing all their homework.

   I enjoyed reading this book. It is fascinating, and hopeful.
    
    

[darlene38]

thank you for your comment i guess i do understand better now, keeping in mind that i only found out a week ago, you can imagine how i had a migraine for 2 days thats all i read about...i will try the books and i found someone who lives in NJ that has an nld child and she is helping me understand this better too, and she helped me understand why it would be mistaken as aspergers, there is one area my son really has issues with that would be easy for asperger's, now i get the difference...things i would never of thought of...so now i know i am not alone we have exchanged phone numbers and she lives in a different country than i do but it doesn't matter, good thing i have free long distance to the states....devin will be getting OT for quite some time now to start soon, and other help is coming to...
his teacher has no clue about this disability but she is already trying to read what she can and now is trying to adapt her learning style within the class to include devin too, she gets things better now, finally a teacher that is willing to help my son...

about any damage to his brain i am not sure but he appears to be a worst case of this dx, and as my new friend puts it , from what i told her, he is classic all the way...but i know he can get better, at least i am hopeful!!!