4 year old son going for evaluation b/c speech delays

[amdflorida]

Hello, I am new here and would just like some input.  My son just turned 4 years old and since he as been about 2, we noticed his speech was limited but thought it would improve.  And it has improved, he speaks alot of words but even I cannot understand him sometimes.  He also talks in a very low voice which makes it even harder to understand.  He knows some colors, numbers, letters etc, when you can get him to say them. The pediatrician said I should take him for an evaluation, even neurocognitive testing.  The pediatricians exact words were "Well, autism is showing up in kids all the time now and days."  That was the first time I ever thought about him having any kind of autism!
My son has always stayed home with me - no daycares but loves to play with kids and interacts with me and his dad all the time.  He is very affectionate too.  The only thing I could find that related him to autism was that his speech is delayed and he likes to play with his toy cars and he does line them up.  I feel like I have been paranoid since the doctor told us to get him evaluated.
Oh, and he is not potty trained yet - we have been working on that for awhile. He will poop in the potty just because I know his bowel movements and I make him sit on the potty but he won't tell me if he has to go to the bathroom.  He is whiny alot too but he also has a 10 month old brother that he likes to imitate (cries like him, crawls on the floor, etc.)
Do anyone think I have reason for concern for autism?  We have him scheduled for an evaluation in 2 weeks but I just wanted to get my head straight before I took him.
Sorry its so long - I am sure any concerned mommy would understand!
Thanks in advance!

[mjthewriterdad]

I tried to post earlier and it got lost.  Gee, it was a nice long post, too with a lot of good stuff.  I'll try to re-create.

Autism or autistic spectrum disorder is a POSSIBILITY.  It is one of many POSSIBILITIES.  

I guess I don't understand the paranoid part, since a good diagnosis is the first step to helping yopur son.  That being said,  I can talk more about autism.  

Autism is becomming diagnosed more and more because (my opinion) is that firstly,  when the symptoms presented other mis-diagnoses were used.  For example, centuries ago, maybe it was "demon possession",  Later, the Irish had "fairy children".  A few decades ago, we called it "childhood schitzophrenia."  Secondly the DSM IV-TR opened up the category a bit.    Thirdly, combine the DSM (medical/psychiatric) definitions with the dept of education IDEA law definition, this adds more to the autism definition.  Therefore, the diagnosic criteria keeps getting refined over the years.

I prefer to say autistic spectrum because autism runs a broad spectrum of functional levels.  It's not necessarily the kiss of death.  Especially if it's identified and early intervention is taken, it is easier on him.  It also depends on how well he functions.  Many sucessful persons are on the autistic spectrum.  I peresonally know a computer consultant, a livestock handling equipment designer, a psychologist, many writers, maybe some others I can't think of right now.

I know this one guy was diagnosed with autism at an early age and the professionals wanted him in an institution.  His family didn't have the money or whatever to take him to an institution back then, but he did go to one later in life --  YALE!   He is a research psychologist.

First, take some time to read some of my jornal entries.  Especially the one "bring on the leeches."   It has a few things to lookout for.  It has other things that tend to be sucessful, too.

U probably  want to know what to expect at the evaluation, right?  
Well, there are no "blood tests" nor any reliable brain scans as of yet to say "autism".   It's only psych testing and observation and interveiws that make the determination.  Sop, dont expect anything immediate.  He may need to be seen again (and again, maybe) by other people.  

If you go in, insist on a multi-disciplinary approach.  This is often called an M-team.  This is where you have a team of many specialists, doctors, social workers, therepists etc. in the areas your son has shown delays.

The M-team approach is good because each therepist has his/her own angle at how to see him.  For example, a speech theripist will look at him with a language processing bias.   An audiologist will test hearing.  A neuro-psyc will look at the brain and do testing.   Then they get together like the blind men and the elephant and combine their results to get the big picture.

They will ask you the same questions over and over.  Be prepared to tell the same story to many persons.  They will probably have your son in an observation room (you know, with the one-way mirrors and cameras).  Expect him to put some puzzles together maybe a few peg in boards ask him some questions, ask you some questions.  One thing you got going for U is that he is 4 years old and you have many observations.  If he had any testing done prior, bring those results, or sign a relese of info.  For example they wanted those test results when my daughter was born, they wanted APGAR reports and some of those "heel *****" tests like PKU, etc.

An MD or genetics counselor may want blood to look at chromosomes.  Fragile X comes to mind.   The may ask some questions on your ancesters and family.

When they are done with testing, each team component member  will produce a written report of the findings.   Make sure you get these reports!  Trust me on this, you will need them later in his life.  Start a folder with these reports.  As he gets re-evaluated later in life periodically, your folder will get fatter.

Some time after all the reports are in, they will invite you to a meeting with all these specialists,. social workers, doctors, and other professionals.  My advice:  BRING SOMEONE.  You will need someone to help  take notes, and follow what they say when they talk about the next steps etc.  Many parents I knew had a hard time emotionally tracking after the preliminary comments.  Then they start to sound like blah blah blah, (Charlie Browns teacher).   You will want to be able to have someone with a level head to track the entire meeting.    They may talk about strategies and interventions and programs and child find and referals and whatever.  

You can send me a message if you want.  Also, my daughter who is in her twenties and who is on the spectrum is here, too.   I wish U the best.

[MJIthewriter]

You could go for an evaluation. Otherwise, I'm not really sure.  It could be your child's pediatricians are overreacting, but they could be right, who knows. I wish I could help more. I think there's a lot of misunderstanding going around. Delayed speech is a sign of autism, but it could be a sign of something else too.

Likely if your son is autistic, he'd probably be tagged PDD NOS, like me. (PDD seems to be the diagnosis given to people showing some characteritics of autism, but not the complete range, and perhaps a few other non characteristic symptoms as well. It's like aspergers, but the cut off is when language starts. If language starts at a normal age, then it's aspergers.  If speech is delayed, then it's PDD or PDD NOS (Pervasive Developmental Delayed, NOS, Not Otherwise Specified)

My dad visits this forum. He can give you his input when he comes around.