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  

[mjthewriterdad]

Was this meeting with a multi-disciplinary team (m-team)?  Who was at this meeting? Did they have expertise or experience in his area of developmental situation?  You can ask for an m-team evaluation iof this was not done already.  If he was m-teamed then he is on his way to getting help.  


Bear in mind the EDUCATIONAL definition of "autism" differs from the mental health community DSM definition.  For educational purposes, they use broad categories defined by the Individuals with DisAbilities Education Act (IDEA).  Also bear in mind autism runs a wide range of functional levels and IQ scores.

The 13 categories of IDEA are:
Autism
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

As a parent, you have the right to receive a copy of the evaluation report on your child. You also have the right to receive a copy of the paperwork about your child's eligibility for special education services. If  you think they're wrong, you can ask for an independent evaluation at no expense to you.  That may be a good route to go.

Nothing should go without your written consent.  When they evaluated your boy, they should have sent you something in writing that they were doing this.

It may be a "convenient" diagnosis, but it may be the best they can come up with to get the needed services for your boy.  

Autism is not death.  I personally know of some very successful adults with autism.  My very own daughter graduated high school at the top 10% of her class.  She even had some college education.  

Many famous people have admitted to having autism or Aspergers:

Daryl Hannah  was diagnosed as a child as being  borderline autistic
Matthew Laborteaux, actor on Little House on the Prairie  
Dan Aykroyd stated he has Asperger's, he may have been joking
Richard Borcherds, mathematician specializing in group theory and Lie algebras
Craig Nicholls, of the band The Vines
Gary Numan, British singer and songwriter  
Dawn Prince-Hughes, PhD, primate anthropologist, ethologist, and author of Songs for the Gorilla Nation  
Vernon L. Smith, Nobel Laureate in Economics  
Satoshi Tajiri, creator of Pokemon

[buczko]

Thank you for your post!  It was very encouraging.  I must admit when they first said autism, my heart sank.  Thank you for being so positive.  
This was a domain meeting with the school principal, his teacher, the school psychologist, and two "autism specialists" (I don't know what their specific qualifications are, that's just how they presented themselves).  We knew he was being evaluated, and we were so excited to get some help with his emotional outbursts!  But then when we had the meeting all we heard were "Red Flags" and "On the spectrum".  I thought or I guess expected that they would have looked at several options for his behavior, but that didn't seem to be the case.  When I asked if it could be something other than autism the two specialists kind of prickled up and told me that I was welcome to take him to a clinic to be diagnosed.  I was just curious if there was another disease/disorder that he could have.  Is it just bad parenting?  Maybe he's just really smart and weird...like Einstein or Beethoven (but not quite that smart!)
If he does have autism, I'm ok with that.  It doesn't change who he is or the behavior we've been living with.  My main goal is to get him the help he needs, but I want it to be what is best for him, not what's convenient for his school.  
Where can I take him to get him medically diagnosed?  What does that entail?  If he is medically diagnosed, what then?  
Thank you for your help!

[mjthewriterdad]

You have a right to disagree and get an independent evaluation at no expense to you.   It will always be on the back of your mind if you didn't.   We did this with our daughter and took her to the University and they did a great job of different specialists looking at her learning styles, her thought process.  We came out of there wioth a lot of good info about her.

When you go to thise kinda meetings, I ALWAYS SAY:  BRING SOMEONE WITH YOU.  These first time m-team meetings are VERY EMOTIONAL for parents.  You could and should ask what other options did they consider this is called a "differential diagnosis."   You could still ask that.

Autism is NOT A RESULT OF BAD PARENTING!   This was a myth that perpetuated about 30 years!  Autism is a neurological disorder.  Beware of the bad parenting "diagnosis!"  This is a diagnosis made up by in-laws, teachers, friends and family and church groups.

Maybe Einstein and Beethoven was on the spectrum, but autism wasn't even identified until 1943.  Before that, it was called "other" things.  

Just remember after his diagnosis, he's the same boy as before.  His behoivior patterns now just have a name.  Once you feel okay with his diagostic label, you may want to let him know.  He KNOWS he's different.  Problem is, other kids make up their own diagnositc labels for him.   It id devastating when he starts to believe these made-up labels.  Teachers also make up diagnostic labels as well.   He needs to know what his ACTUAL diagnosis is.

I don't know where you live, but maybe there is a state University childrens clinic?  Maybe the boy's ped may refer him to someone.  One thing you got going with the school route is that you don't get health insurance hassles.  Autism may be one of those pre-existing condition bugaboos that insurance companies love.

Respectfully, what diagnosis is convenient for the school may very well be what is best for the boy as far as getting school services are concerned.   You don't want individual teachers "making up their own diagnoses"  I've heard some dooseys:   "Oppositional, defiant, stuborn, strong-willed, problem-child short attention span"    

Please read my journals.  I wrote a lot of the stuff there.  

[buczko]

Thank you.  I absolutely will.  You've been a great help.

[MJIthewriter]

You can read my journals as well. Being autistic, I can help explain some of the triggers that cause me to lash out. It may or may not be the same for your son, but it is worth reading.

[buczko]

Thanks!  I have read both of your journals.  They are very informational and supportive.  One thing I haven't found (and admittedly I haven't throughly searched) is information about being very emotional, but only sometimes.  Are random emotional outbursts part of all this?  He just gets soooo upset over the littlest things.  And the worst part is, there's no rhyme or reason to it.  For example, we were at Karate Class the other day and he raised his hand in response to a "did you get this" question from his instructor.  When he looked at me I shook my head no and mouthed "we didn't get that".  He immediately started crying.  And not just crying, but out of control temper tantrum crying that lasted almost an hour.  Even after I explained what was going on he still continued.  Now, the very next day he had an argument with his brother which almost always sets him off.  But this time when I intervened and asked (as usual) what he should do instead of yelling he said, "just walk away.  I got it mom, it's no big deal."  ????? This is where I get so confused.  How do I parent to this?  I really am trying, but when it changes every day I just want to give up.  It is so exhausting.   I would really appreciate some advice.
Thanks!

[mjthewriterdad]

Cjildren with autism take things VERY literal "Did you get this" means "did you understand this"  He may have had a fit because he didn't understand what he was saying.  It didn't make sense to him.   Many children with autism don't understand sarcasm or hidden meanings or "double meanings"  or "just kidding"     One example: The plumber walks in the house the child asks "are you the plumber?" the plumber responds "no, I'm  a martian"  This will probably cause a meltdown.  

If something goes against his set pattern or pre-programmed set of expectatioins -- this causes a conflict in his brain. It's not a little thing to someone who NEEDS structure.  

Rent the video RAINMAN with Dustin Hoffman and Tom Cruise. Dustin Hoffman play the part VERY WELL!  You see many scenes where he has a tantrum over 1.  envioronmental (smoke alarm scene) , 2. change in routine (must see judge wopner, underwear scene) , 3. memory "triggers" that establised a precedent. (bath scene).  You also see echolaia (whos on first), attention to details, litteral thinking (walk/don't walk trafic lite scene).

There is ryme and reason if you try to understand.   Sometimes something as simple as a flashing burned out florescent lite or a noisy television flyback transformer (the high pitched horizontal scan frequency) can set a child with autism off.

mj talks a lot about returning home and finding a plant stand appearing in the house,  She was upset!   I think she handled it in a more mature way, but the change visibly bothered her.  

Once I closed the hatchback on my car and said to her "watch your head"  She replied "I can't watch my head, my eyes are in my head"  She got upset because I said something like "keep your eyes peeled out for ..."  You can immagine what this meant to her (gross).  If you "invite a friend over for dinner" he may expect just dinner and nothing more.  Just eat dinner and not stay to chat.   Imagine what he thinks if you say "let's have joe here for dinner"  Are we Canabals?

[buczko]

I don't think I conveyed what I meant very well.  I'll try to explain...
He's not literal, not at all.  He talks in slangs and cliches.  We talk about his "flip outs" (i.e. tantrums) with him and he tells us if he "flipped out" at school or not.   He doesn't get upset at changes in environment or patterns.  He seems absolutely normal, though very immature...but only sometimes, and that's the kicker.  Sometimes.  We have no idea when or why something is going to set him off.
  He might cry when it's time to come in from recess or to stop playing video games.  Sometimes it's an all out melt down, and sometimes there is no problem at all.  He might completely flip out if he gets an idea in his head that let's say, we're going to grandma's, but when he asks if we can go and we have to say no, it could be a meltdown, or he could just look at us and say "well, maybe next weekend."  Other things that are possible meltdowns (or not) are disagreeing about which movie to watch with his brother, what we are eating for dinner, asking him to help out around the house, doing homework or going somewhere with dad.  All of those things have been meltdowns sometimes, and no big deal at other times.   ????
  He seems like just an average little boy in every other way, but these random flip outs are the problem that caused the school to ask us if he could be observed, and what causes me so much stress.  Is this a part of autism?  Is this something that kids who are "on the spectrum" experience?  

Thanks

[mjthewriterdad]

My neurotypical 16 year old girl has problems with chores and homework!
What you can do is videotape his flipouts and play tape to school teachers/psyc whatever.  

One autistic boy of a friend of mine  has problems with barometric presure.  Some days he's good with something done at the wrong time and the very same thing, he's smashing his hand thru a window on another day.  We charted it and found a strong correlation with the weather.  Then we looked at the barometric pressure.  

A lot of classroom teachers can tell you about general classroom behavioir problems and weather.  Sounds strange, but they know.