please help me understand my 8 year old son

[rebbecca]

my son went to a drs appt today and i was told that he has a touch of autism. what does this mean? and what is aspergers syndrome because he said that he by have that too? and that my son has a mood disorder but not bipolar. my son is only 8, he is taking concerta and risperdal. the dr wasnt very helpful about explaining it to me! what can i do to help my son? please help!

[Jason C Bourret, Ph.D., BCBA]

It sounds like you have some valid concerns regarding the information given to you by your doctor.  If your doctor has seen some indications of autism, it is important to bring your child to a specialist in diagnosing autism.  Good choices include developmental pediatricians, pediatric neurologists, child psychiatrists, and child psychologists.  Make sure that the individual providing the diagnosis has experience in diagnosing autism spectrum disorders.  Your pediatrician, local hospital, or school district should be able to refer you to a qualified individual.  Regardless of who you are seeing, make sure that the diagnosis and the reasons for it are fully explained to you.  You shouldn't find yourself walking away confused about the diagnosis.  If you have any concerns, seek a second opinion and find a diagnostician you trust and are comfortable with.

[rebbecca]

is there anyone out there that can help me understand what is going on with my son????!!!!!

[jerry9798]

There is a very good publication about autism. The reference is

Autism Spectrum Disorders
Neuron, Vol. 28, pp 355-363, November 2000

Fortunatelly, it is available in internet, so you may look for it in the web, by typing the article title.

I understand your frustration for your son condition, but it is important to have a precise diagnosis in order to focus your energy in solving the real problem. The recommendation to seek a developmental pediatrician is in that sense.

I wish you find the best treatmenr for your son.

[SueNYC]

Dear Rebecca,

I posted above and it sounds like you and I are in similar straits.  My son who is 9 has also been throught the gauntlet of experts.  I suggest you get a NESPY done.  He also had a test for autism.  I will admit that tye were also inconclusive but it did help s understand what his deficits were.  Medication has also been a complete bust for us.  Lately he is on Tenex - which does little for the attentional deficit but it has kept his impulse and emotions under control (to some extent as none of these pills are a panacea).  Prozac did not work at all (he gained weight and became very disinhibited on it) which is pointing to an underlying mood disorder.  

The NESPY pretty much brought out that he suffered from executive dysfunction.  This is a trait that overlaps with Asbergers - so again - it is hard to tell.  But none of these things would have shown up on the psych-education evaluation that the school did.  Our school psychologist begged us to have it done privately.  The state doesn't allow her to give one because it would uncover too many deficits in children.  If you can afford it take him to a neuropsychologist for testing.  Be prepared, it is a long grueling test and it came in at $3,600 (NYC - may be cheaper elsewhere).  Sometimes the major hospitals in your area will haveCHild Development Centers - they are the best way to go.  If nothing else, they are very helpful in constructing an IEP for your child.

His psychiatrist who has a large Asperger's client base also thinks he has a touch of Aspergers - but he is not a "waiting room" diagnosis.  She admitted there was a bit of a stretch to it. His behavior fails to fufill any criteria totally which means they love trying clinical trials on him.  Currently we have him labeled as Emotional Disturbed because it opened the flood gates for services (no - he doesn't torture animals or fight kids - he is just inflexible and unmotivated to perform in school).  As my advocate says, I would label them swiss cheese if it gets them the services they need.

We did find out - in a major study for ADHD children - that he was gluten intolerant.  We cut out the gluten and that improved his behavior somewhat.  It was only 10% but that was better than nothing.  So if your child is having skin problems, allergies, or toilet troubles you should have a blood test.  They found that a very high number of the children with severe ADHD were gluten intolerant (but did not have celiac).  

In the end we hired an advocate service.  Even though my husband is a lawyer we felt it was best to procur a professional in this matter.  They can at least help you identify programs within your school system and those privately based that will help your child.  Ours sent us to Gersh which isn't even on the map, but it was known for bright children with social issues.  Don't be afraid to get him evaluated and then demand the services he needs.  You can even get the school board to pay for some of these tests.  Also, ask for a Functional Behavior Analysis for the classroom.  You can also ask for an Adaptive Technology assessment.  Luckily, our insurance company surprised us and picked it up.  We had the psychiatrist write a request.  

His school is currently using the methodology of Dr. Greene's "The Explosive Child."  Dr Greene is at Harvard and my son's psychologist (we have a ton of professionals for him) assures me that his methodology is sound.  He published his data after the original came out - unlike many other of these books that are ancedotal.  His school, Gersh Academy, uses his collabrative problem solving methods.  The school is in high demand for their advice in setting up programs because of their phenomenol record in helping children like ours.  Along with intensive parent training and this book's philosophy we have brought our struggles down to a minimum (an no - I don't get kickbacks from either groups.  

Take care.  We cried alot of tears and ate a lot of chocolate these past few years.  This year has been incredible.  He is thriving in a therauputic environment.  I do not know how your child is coping so take our case as an extreme one.  Just be assured that their is hope out there.  

One of our best days was the school's annual gathering.  We met a lot of parents with children who were so much like Sam.  We laughed and sometimes almost cried (especially when talking about the pain our children endured in other settings).  But the most obvious trait was the passion in advocating for our children.  Many of us went from being nice parents to becoming difficult nightmares that made school administrators shake in their boots.

My biggest advice is stop being nice - always be polite - but stop being nice.  School social workers don't tell you have of your rights.  Also, document everything that goes on between you and your school just in case you do decide to go the private route.

Susan - Survivor of a  Very Difficult but Incredible Child

[rebbecca]

thank you so much for your input, it has helped alot!
happy holidays,
                  rebbecca

[bweebles]

I have a 9-year-old son who is also complex.  His teachers have always said they don't believe he is ADHD (could be the grape seed with gingko he's been taking since age 4) but his second grade teacher mentioned Aspergers 2 years ago.  The Christian counselor he was seeing mentioned it as well and his last pyschological evaluation brought it up 3 times, however as I said, he is very complex.  People have also suggested he is depressed, possibly bipolar, and friends who have ADHD kids think that is his problem (even though his teachers don't see it).  ALL of these mental issues are HIGHLY subjective, which is why we have chosen NOT to medicate as belonging to forums like this teaches me that many times you have to try a LOT of different things, and sometimes the results make things worse and not better.  I especially appreciate the comment about gluten intolerance as my son has an issue with pooping and insists he does not know when it is going to happen (even says it happened last night while he was asleep).  I will have that checked out.  We also took him to a chiropractor/kinesiologist, who said that he has a problem with sugar and dairy.  We pretty much restricted those 2 things for 3 weeks, and didn't really see a big change behavior-wise, but he did lose a few pounds and after Christmas I intend to take him off of that again (and gluten as well if we can do it - that's a hard one, but we can try our best).  He is a good, sweet, kid - just is very easily frustrated, and gets extremely angry when other children do not follow the rules in games (although his troubles only seem to happen at school).  Once he gets upset, so far, there's no stopping it - although I really think there has to be a way that we just haven't discovered yet.  He is extremely intelligent - especially verbally (tested in the 99.9th percentile in his evaluation), so I really think there has to be a way to get a handle on this without drugs.  I have a friend I consult with about natural alternatives, as well as a local health food store who is managed by an ADHD adult.  I give my son a very good multi-vitamin, a High DHA Omega 3 (which I'm told has shown to be effective in some with bipolar), and a grape seed/gingko supplement.  I also just added magnesium as if you check out www.krispin.com and look at the section on magnesium you will see a lot of different things that can be a result of magnesium difficiency.  My son also still wets the bed (although among boys that is somewhat common, and hereditary as well, so although it is sometimes an annoyance, I am not so concerned about that - we just do a lot of laundry!).  He also does not sleep well - usually goes to bed early - between 7 and 8pm, but is almost ALWAYS up by 5am (I'm sure that will change once he hits puberty - but I actually won't be upset if it doesn't!)  He almost always wakes up at least once at night - and sometimes 2 or 3 times.  Anyway - I really enjoy these forums as it gives us all the opportunity to share experiences etc.  

[rebbecca]

thank you so much, i will be looking in to the food health stores!!!!!!!

[tomcat47]

My sone is 13,,he has aspergers,,as you no looking at him you woulndt no,,,he is an honor student,he also always had a sleeping problem he doesnt sleep....when he was younger they wanted us to give him more meds then and elderly person takes,,,We stopped them all,he takes nothing,,,some days he will talk your ears off,some days not a word,,,,he does not like noise,,,,and takes everything litterlly,,,he had one problem the school said was strange,,he urinted in his desk in the fourth grade,but ,After asking him why he told me the teacher wouldnt let him go to the rest room,,he use to go quit often and they didnt bleave him,,,he does not like going out to dinner or shop,,unless we tell him way in advanc,,and he he wants to no the time we leave and when were coming back home,,and he will mention to us if we off on the time,,,but to smart for me,,the questions this young man ask even when he was 5 I could not anser,,,,they made a movie about a proffessor at brown univisty that had it,,,

[bweebles]

I take it back - I DO notice a difference when my son is not eating