autism, or something else?

[buczko]

Please help.  My son is 6 and in kindergarten.  He is very smart.  He's reading above his grade level and has no problems with his school work.  I had a meeting with his school and they are telling me he has a high functioning form of autism.  He has a problem with winning/losing, or not getting called on.  He will absolutely have an emotional break down, crying so hard he can't stop himself.  Sometimes we can talk him out of it, and sometimes we can't.  That's the biggie.  His meltdowns are very random and very over the top.  He has no speech problems, doesn't obsess over one toy, eye contact is about 50/50, he isn't literal.
I've been searching the internet for characteristics of Autism and Asperger's, and I can't tell if they are right.  If they are, then I want to do whatever I need to for him, but I feel like they are just throwing in the A word because it's a convenient diagnosis.  If they are wrong, what else can it be?  Please help.  I want to do what's best for him, and I want to help him for what's really wrong.  I just don't know where to go to find the answer.
Thank you.
Amanda  

[skepticalpeach]

I'm sorry to break the news, but Asperger's is no longer considered a diagnosis. It has been taken out of the DSM. It is just autism now. So, yes, autism is now considered the same as Asperger's. But, that does not mean that everyone on the spectrum is the same. In fact, quite the opposite is true.

[LukeMauser]

Autism is not the same per se as Asperger's syndrome. The symptoms have a crossover, butthe diagnostic criteria are different. Asperger's hasn't been widely recognized in many places until recently. It seem that your son has it (although I would say it is something you are, not something you 'have'). I 'have' Asperger's syndrome; I've known that since I was a teenager, and I was finally diagnozed aged 34. Your son will benefit hugely from a diagosis, if indeed he is on the spectrum. Try the AQ test (Google the term, you'll find a version you can take on his behalf). PS , I love being the way I am. I wouldn't have things any other way.

[buczko]

well, it's been a while!  ;-)  I thought I'd update, for anyone who cares.  
I have found, purely by accident, a holistic solution.  Normally I have a healthy skepticism for holistic treatments, but this has just been amazing!  I had neglected my self during all the school hoopla and finally had to go see my chiropractor so that I could walk upright.  I explained that I hadn't been in because my son...blah, blah, blah.  She asked if she could take a look at him (free of charge).  I said, "sure, why not?".  She did some kind of emotional therapy on him.  It was eerie how well she was able to pinpoint his "issues" without me giving her even the slightest heads up.  She'd touch certain points on his body and then tell me "he has problems processing", or "he has very sensitive feelings"   !!!!  She was saying almost word for word some of the things that the school counselors were saying.  When we got him home he was a completely different kid!  She is now working on his brother as well and things can't be better.  Thank you so much for all your help and advice!  I've really appreciated your willingness to listen and offer suggestions.  

[crazywith4]

Wow.  I could have written EVERYTHING you said!  My son will be 8 soon, and I found your questions when I was Googling "excessive drooling in eight year old.  The meltdowns, EVERYTHING about them... absolutely the same issues we're having.  Hmm... I must agree w/ all the ADD/ADHD possibilities, but yet, like you, *I* don't see it either.  I was wondering if he was autistic, or had mild asperger's as well!

Wow.  I'm just floored reading this, and I've bookmarked this page to show my husband.  I feel like I've reached some sort of breakthrough.  My husband was just saying tonight "Well, I don't really think there's anything *wrong* with him."  My reply "Honey... there isn't anything *wrong* with him, but he is sooo outside of the norm, on so many different levels, and it's affecting his life.  It's *something*, and I just want to know what it is"

I will be coming back here to find out what you're finding!!  

WOW!!

[buczko]

Thank you.  I will absolutely look into that.  
When the counselor suggested meds I told my husband that we needed to take him to the children's hospital and have him medically tested.  If nothing else other than to keep the mental health professionals from "diagnosing" him with anything else.  We have put it off because our insurance is SOOO bad (even though we pay out the wazoo for it) we know this is going to put us into debt...which I would do without hesitation if I thought there was something there that was serious, or affected every aspect of his life.  
We think that there is something not quite right, but we don't think it constitutes all this craziness.  He needs help coping with disappointment.  His temper tantrums have evolved into a stubborn refusal to do anything, he still cries easily and is very sensitive.  That's it.  Other than that he's a happy healthy normal little boy.
I have an appointment with the counselor this week by myself, and we'll see how that goes.  If she continues to talk about meds or ADHD, I may be calling the children's hospital sooner than I think!
Thanks for all your help.

[mjthewriterdad]

How to go about an IEE?  As far as I know, just write a letter of your intentions and include the dat of the school's evaluations and reasons why you disagree and let them know you wish to pursue an Independent Eval;uation inaccordnace with federal IDEA law.  

Then just set up an appointment with someone.   I would recomend a university clinic or child study center.  We took our daughter to a State University (Big 10) Hospital child development study center.  They did a good job of everything.  

When all is done, you must sign a release of records and information about the evaluation to the school to give them access to the records.

[Sally44]

Surely the professionals referring your child should be giving the reasons for the referral?

[Sally44]

Yes.  Still going down that route.  
The thing with any of these disorders is that they are usually diagnosed through professionals observing them.  Children can vary day to day and throughout the day.  Professionals may also have their own agenda.  
I think the one thing you can agree on is whether you think your son has difficulties.  Then it is a case of trying to tease out what they are.  This is especially difficult if you have a child at the more able end.  There are alot of disorders that have some charactertistics in common ie. Autism/ADHD/OCD/Sensory Difficulties/Executive Function Disorder etc.  For example a child with autism may fidget because they don't understand what they should be doing; they may have sensory processing difficulties and need to fidget to be able to get feedback from their body; it maybe a different kind of sensory thing where they are fiddling with something in their hand; children with autism also have difficulties with focus and attention.  They can concentrate for hours on a topic they like eg. making a lego model, but may be unable to pay attention to what they should do in class.  ADHD can have some similar charteristics to that so that the child may find it difficult to pay attention and concentrate and may also find it difficult to sit still.
Sometimes it just takes time for everyone to see and agree what the difficulties are.  I presume all these concerns were brought up for a reason.
My son can also over react emotionally to some things, but can cope at other times.  When he does get upset he says he cannot control the feeling.  So in some way they get flooded with emotion which is out of proportion to the event that triggered it and they then have difficulty getting it back under control.  So they can be upset for hours afterwards.  As he is verbal I would start trying to get an explanation out of him.  Is it the event or can't he stop the feeling.
Has he been seen by a speech and language therapist and assessed.  Sometimes their expressive speech can be age appropriate or advanced, but their understanding/ processing of language can be at a different level.  For example my sons expressive language is age appropriate (age 7), but his receptive language comprehension is at age 3.  So he gives the impression of being okay from a speech point of view, but in the classroom he cannot function because he has got no idea of what he is supposed to be doing.
Whatever disorder is mentioned to you, have a read about it.  But in time you will begin to see where he fits into the plan of things!
If he does have difficulties, as he gets older those difficulties with have an affect on higher functions so it will become more obvious because the difference between your child and their peers will widen.  If he is doing okay academically you may notice that the differences widen around social communication, so you will know that that is the area of concern.
But one of the first things to understand is that there are two routes to an evaluation.  One is through Health and one is through Education.  Through health you would expect to see Speech Language Therapist, Clinical Paediatrician, Clinical Psychologist, Occupational Therapist, (maybe Neurologist).  I am not sure in the US who you would see through education.  MJthewriterdad knows more about that.
I did find it helpful to get a private report from an Occupational Therapist who had expertise in these types of disorders.

[buczko]

What exactly is that?  Could you please explain a little more?
We went to a counselor (as instructed by the school) and it was such a bad experience.  Not necessarily for him, but for me.  She said that he doesn't seem like he needs counseling, and for goodness sakes why haven't we taken him to his pediatrition???  She thinks he shows signs of ADD/ADHD (which he does not) and wants to medicate him to help his "fidgeting".  HE'S 6!!!!  What 6 year old can sit through an hour long session, and the first one mind you, and not fidget?  Ughhh!  This seems to be getting worse with every turn.  He clearly has autism, he shows no signs of autism, he needs counseling, why are you in counseling?, he needs a pediatrition....and meds!  This is crazy!!  Did you all go through this too?

[mjthewriterdad]

youre not S O L  yet.  They may have won the battle but not the war.  Federal IDEA law gives you the right to an Idependent Educational Evaluation (IEE) at their expense.  Just ask for it in writing and pick a specialist and go there.  You do need to release the records of this evaluation for them to  use it.

[MJIthewriter]

You're welcome. I'm sorry the result didn't come out favorable. It seems they cut off at some point, but those people right at the cutoff are left struggling with some things...

I wish it weren't that way.

[buczko]

Well, here's the final school scoop, I guess.  We met with the team last week.  They did several tests, all of which came back completely normal (the only one I contest is the IQ test, but that's a whole 'nother story!).  Last time there were two autism specialists and the autism coordinator at the meetings telling me how many red flags there were and that I should join an autism support group.  This time there was only one autism specialist and she was in the back typing the minutes as we spoke.  You know, last time they were SO sure that he had autism, but now all of a sudden, he has nothing of the sort and he qualifies for no special services through the school system....but we should take him to a counselor (out of pocket, of course) to help him with his coping skills.  I TOLD them last time that I didn't think that was the case and they didn't listen to me, now I'm just S.O.L. and am no better than when we started.  
So, that's it.  Thank you all for all your support.  When I was really scared and at my lowest, you really helped me feel like everything was going to be ok.  Thank you, thank you, thank you!!!!!!  
Amanda

[MJIthewriter]

I found some tips off a magazine that may help. It was in a Parent's magazine and had some tips for quieting tantrums. Maybe some of these will help. I'll try to get the main points and summarize in the limited amount of time I have:

1. "It's not fair!!!"

Don't say "Well life isn't fair!"

Instead try to empathize with your child and acknowledge he is upset. Let him know you agree it's upsetting and talk with him. Then talk about things he can do.

2. "But whhy??"
Don't say, "Because I said so"

Turn the question around and ask, "Why do you think I am saying no?"
And you can give some hints if your son is having trouble.

3. "You can't make me!"
Don't say "Yes I can!"
Try lightening your son's mood by engaging in a game or joke. Try making your request into a game, for instance see if you can clean your room in two minutes (and set a timer).

And if those don't work then set up a consequence and stick to it. You can also try to explain things in a way he can understand such as your case, tell him you can't get to your hometown because it is still too far away. Perhaps say you don't have a space ship and can't go the speed of light. Or perhaps you can find a rest area. I know when I was younger I hated being cooped up in a car... Especially if I had to go pee...and the nearest exit seemed to be years away.

One of our favorite games was to pick something like a bridge and see who can spot that landmark first. The winner got bragging rights… At least it worked to keep us alert and not ready to choke each others’ throats in exasperation and boredom.

These were some tips from the Febuary 2008 copy of Parents magazine. The last paragraph I paraphrased to include something unique to your situation. The example they used was getting their child to wear a seat belt by saying the cops will get mad at daddy if they find out he is not wearing his seat belt.

I hope these may be helpful.

[buczko]

We have found no correlation with his triggers (not to say that there isn't one, we just haven't found it).  It does not seem to be sensory, or due to environmental changes.  He doesn't seem to be bothered by big crowds or lots of chaos.  His father and I are both musicians and although the school seems to have noticed that he is really bothered by certain notes in music class, I chalk that up to wishful red flag seeking.  We have never noticed that in him.....ever.  They claim to see other red flags also, that the school psychologist pretty much ruled out when she visited our home.  
Most of the time his tantrums are because things aren't going his way.  For example, we just got back from Grandma and Grandpa's.  It's about an hour and a half drive.  When he saw the sign that said "Our Town" 25 miles he had a mini meltdown because we weren't getting there fast enough.  It was pretty easily deferred, but we never know when or why they will be that way.  Last week he melted down almost completely because a star fell off his karate uniform (they get stars when they bring in good homework).  We were about to go to class and he and his brother each had a piece of work to bring in.  His brother's star had not fallen off, which meant brother would have 2 stars and he would have one.  We spent 20 @#$% minutes in meltdown because he wanted to have the same amount of stars as his brother.  I could not reason with him to save my soul.  No matter how many times I said "You can have 1 star or none" he'd answer with "The same as his".  The only thing that saved us that time was that he (just by chance) got to lead karate class that night.  He just blossomed when he got the chance to lead.
Like I've said, sometimes things we are absolutely sure will trigger a flip out, won't and other times the teeniest thing (like 25 more mi) will be devastating.  We have been trying to keep track of them, but there just seems to be no rhyme or reason.  
Looking at the sengifted.org website was really eye opening.  That looks the closest to who he is than anything I have ever seen.  As I was reading through it and other websites, I just felt like it clicked, you know?  It seemed to "get' who he was, where as the school just seemed to force him into a category and not really care who he was (I know why they have to do it that way, I'm just saying...) We've contacted a counselor to ask about medical testing and what our first step should be.   The longer this goes on, the more ready I am to hear what the Drs have to say.  

[MJIthewriter]

I forgot to ask earlier. Do you have any idea what triggers your son's tantrums?  Does he tantrum more when there is a lot of noise or sound?  Does he tantrum when something changes unexpectedly?

All children will tantrum and most will tantrum if they can't get their way. (for instance if they don't get a toy they want or can't eat candy before dinner) that is normal behavior for both normal and autistic children.

What I'd like to know is more detail of his triggers. It could be some of his triggers are sesnory, but you may or may not have made that connection.

I get in an emotional fit if I am over stimulated with noise and chaos going around me.

It's normal for all people to get to this point some time, but for an autistic person, this stress comes at a much lower threshold.  

For instance I doubt many people can stand next to a jet engine when it takes off. (without hearing protection) and if someone was forced to stay there with a whole lot of planes taking off, they would likely freak out and throw a tantrum. Human ears aren't made to put up with that sound.

With that experiance in mind, now visualize the same pain and stress, only instead of jet engines triggering the stress, it is a busy street and car traffic. (not to mention the occasional harley or no muffler car that cruses by)

[buczko]

I know that an IQ test is in the plan, but I don't know if they have done it yet.  We don't meet again until late in April, and you know they won't offer up any info unsolicited!  We have not gotten him medically checked yet.  I don't know if it's because I'm in denial that he needs it, or because I'm afraid of what they might tell me.  Probably a little of both.  I don't think he's gifted necessarily, but I don't really know how to judge that.  He's in kindergarten and has already gone through the 1st and 2nd grade reading texts, but he's not ready for quantum physics or anything!  hahahaha...
There is definitely something different about him, but it just seems so un-autistic.  I suppose it was easy to deny the problem because I thought their diagnosis was made rashly. But, after visiting that site, that seems more logical than anything I've found so far.  I never would have thought of that.  It has really made me rethink getting him medically tested.
Thank you for the extra option!  I will update as things happen...

[DelawareDeb]

Amanda,

I have some thoughts for you. I am the mother of a 4 y/o boy who is dx'd with PDD-NOS which you probably know puts him on the autism spectrum. I am also the mother of an 8 y/o boy who is gifted but with a bucket load of LD (aka 2E - twice exceptional). I'd like to recommend that you do some searches on asynchronous development. Something that is very common in the gifted. My 8 y/o was a lot like you son. He has improved greatly but there are still issues. He has some mild OCD-ish issues and mild anxiety as well. Check out the website www.sengifted.org, this is a great site about promoting the emotional needs of the gifted. Oh, I forgot to mention that when we first started trying to figure out what was going on with my 8 y/o they were saying he looked Aspergerish but I don't think they feel that way anymore. Also, keep in mind that boys are slower to mature emotionally anyway. Also the OP who mentioned checking out sensory integration dysfunction, don't discount it too quickly. Look for the book, The Out of Sync Child.  But ultimately it sounds like your son needs a THOROUGH evaluation if they haven't already done so. And definitely get a second opinion if the results don't make sense to you.  BTW, did they do an IQ test on your son as part of the assessment? If they didn't I would request it as part of the THOROUGH evaluation.

Good luck.
DD

[italianmom]

That doesnt sound like autism to me. The big distict factor is autism causes communication problems and delays. If your son doesnt have that than its not autism. That doesnt mean to say he isnt on the 'spectrum'. But a lot of things can causes mood changes and meltdowns. How about food intolerances? Have u tried going gluten and dairy free. Ive seen some of these kids improve tremendously just from removing the trggering foods out of their diet. You can try it..cant hurt!

[mjthewriterdad]

Trust me,  whatever you said to the autism specialist, they've heard worse!  

I remember one autism speciaslist who realy didn't want my daughter in her class, because she was too high functioning.  I KNEW in my heart that her class was the best place for her.  They were doing things like Lovaas treatments and stuff.   She said she was "autistic like but had too much going for her."   But she was working doing her m-team evaluation for the "gatekeeper" non-profit agency (this was before IDEA) that determined who got in and who didn't. So, I had to bite my tounge.   Now that I look back, they were a bit aversive in her class.

The hard part was that she also ran a support group and I only went once and never again.  I went to the school board public hearings for the group to help their cause, but I will not go to the meetings.

[buczko]

No, I agree that autism is the most likely educational category.  I just don't think he fits the medical profile.  As I said earlier, once the school psychologist pointed out the need to fit him into something it all made sense. I felt so relieved that I finally understood! If that's what we need to call it to get him help from the school psychologists, then so be it.  
I did google sensory dysfunction disorder also...I don't know.  He's just an emotional kid.  He cries a lot, throws temper tantrums, and he's really, really smart.  Those are his abnormal qualities, and that's all. I wonder if we (the school and me) are just reading more into it than needs to be.  The more I look at all these disorders or dysfunctions the more I think that maybe he's just emotionally immature and we're trying to make fit a square peg in a round hole...ya know?  
I should mention that his tantrums are getting less and less and it's becoming easier to talk him though them.  All in just a couple months!  BUT, I have no idea what they are doing with him at school.  I don't know if he's just growing out of this, or if they are really working hard with him.  I kind of expected to hear more from the team after our 2 hour meeting with the psychologist, but nada.  I know I should call the school, but I really don't want to deal with the "autism specialists".  I have such hard feelings toward them for being so insensitive.  I'm afraid of what I'd say to them!  I'm just glad he's getting better.

[mjthewriterdad]

Oh, and sensory dysfunction disorder is also not on the IDEA list neither,  but this nay also fit into the scholl definition of autism.

Perhaps "serious emotioinal disturbance" may also apply.  Maybe you can see if that fits better:.  

The IDEA definition of autism:

Autism: A developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a child's educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. The term does not apply if a child's educational performance is adversely affected primarily because the child has a serious emotional disturbance as defined below.

The IDEA definition os serious emotional disturbance:

Serious emotional disturbance: A condition exhibiting one or more of the following characteristics, displayed over a long period of time and to a marked degree that adversely affects a child's educational performance:



An inability to learn that cannot be explained by intellectual, sensory, or health factors

An inability to build or maintain satisfactory interpersonal relationships with peers or teachers

Inappropriate types of behavior or feelings under normal circumstances

A general pervasive mood of unhappiness or depression

A tendency to develop physical symptoms or fears associated with personal or school problems.


As I looked it up, the word "serious" was dropped in 1997.  Now it is refered to as "emotional disturbance"  Same text, just a name change.

[mjthewriterdad]

The Educational definition of autisn differs from the Medical definition of autism.   The MEDICAL DEFINITION is more specific,  The EDUCATIONAL DEFINITION has to follow IDEA federal law.

Bottom line:   If your boy gets any help from the school system,  he needs to fit the EDUCATIONAL definition of autism.  Medically, he may be diagnosed  ASPERGERS or PDD-NOS (or something else.).  But there is NO EDUCATIONAL DEFINITION OF PDD-NOS nor Aspbergers.  So the best fit is autism in the IDEA sense of the word.   This way he gets special ed servioces.  .

Unless you see any of the other 12 IDEA categories he fits better go for it. But from what you describe, I think autism (IDEA definoition) looks like the best fit to me.

Deaf-blindness
Deafness
Hearing impairment
Mental retardation
Multiple disabilities
Orthopedic impairment
Other health impairment
Serious emotional disturbance
Specific learning disability
Speech or language impairment
Traumatic brain injury
Visual impairment, including blindness

For a long time, autism wasn't recognized as an IDEA category.   We parents and other advocates  fought hard just to get autism on the board.   Now it's there and this general definition kept a lot of children from being left behind.

[srt12780]

How about sensory dysfunction disorder?  Try to google that and see if it fits.  

[buczko]

Wow!  Thanks for the information.  I am a former teacher myself, and I have friends who are still in the profession.  The night before our meeting I called one of my friends who is a Special Education teacher and asked her what to expect.  Even after all her advice and help, I was still overwhelmed and confused.  
Just recently one of the "Autism Specialists" gave me 2 books to read about autism, and I read them cover to cover.  My son does not fit ANY of the examples.  I'm not being closed minded about autism, I'm ok with whatever diagnosis he may have, but I want him to get the right type of help...ya know?  
His teacher and principal are great! I can't stress enough how helpful they have been.  It's the "Autism Specialists" I have problems with.  What are their qualifications?  Do they only know about autism and go around looking for red flags?  That's what it seems to me.  
When the school psychologist came to our home to ask us 2 hours worth of questions, I told her that I thought he was pigeon holed into Autism.  The specialists talked about red flags that we just don't see at home.  After several very specific Autism questions (and I only know that's what they were because I researched ahead of time) she admitted that he didn't look like he fit the profile.  But, she explained, because Special Ed was state funded he had to fit one of the "Special Ed Categories" in order to get help.  She said that he may not be autistic but that was the most likely categorical fit.  Now that made sense to me.  I understand that there's probably some guy that's never taught a day in his life sitting at his desk making up these stupid specifications and hoops to jump though.  
As much as I truly believe in public education, sometimes it's so counterintuitive!