Unable to get a diagnosis for a 4 1/2 year old boy

[shallcoco]

My best friend's son is 4 1/2.  He is a really sweet and intelligent boy.  He knows his days of the week, months, colors and seasons.  He can count to 100 with few mistakes, and he is starting to be able to read three letter words and sometimes four letter words.  He is also starting to be interested in adding and subtracting by using his fingers.  However, he has some quirks that seem to point to a potential problem or issue, but she has not been able to get a solid diagnosis for him.  He didn't have any speech by the age of 2, and he started with a speech therapist at 2 1/2.  His speech improved, and he was referred to a preschool at age 3 for slight developmental delays.  Once he got into the preschool, he was diagnosed with Auditory Receptive Disorder.  Currently, he is in his second year at the preschool and is doing well.  His parents have been unable to get him potty trained so far - he does use the toilet to pee, but only has bowel movements in a pull-up.  He knows when he has to go, and will ask for a pull-up.   He did poop on the toilet twice at age 2, but he has never been willing to do it again.  They have tried everything; the sticker method, rewarding with toys or treats - they tried every possible suggestion out of three different books over the last 2 1/2 years, but nothing has worked.  At one point, they tried saying that there were no more pull-ups, and he held his bowels for days at a time, even with fiber drinks, etc.  At the doctor's suggestion, they have not been too pushy with him about it for fear that it will make the situation worse.  It seems as though he finds some sort of comfort with the pull-up.  He also has a hard time explaining things.  If he is holding is stomach like it hurts and you ask him what's wrong, he will say "There's something in my belly.  A hundred things."  He seems to place a lot of emphasis on numbers.  He will say, "what number is your muscles?," or "what number is your toy?"  The bigger numbers are better, and he is very competive about it.  He wants to be bigger, stronger, taller, faster, etc., and he describes it with bigger numbers.  He also asks questions that he already knows the answers to - "What means like?" or "What means I don't care?"  He seems to get obsessed with things and will talk about the same subject or repeat the same phrases over and over for an entire day.  Recently on a long car trip, he sang the same two lines from a song for one hour without stopping or taking a break.  He also mocks or imitates characters that likes; it's almost as though he becomes that character, and he will say that he is them.  He is also very focused on girly things.  He likes pink, glitter, dolls, butterflies, etc., to the point that it seems like an obsession.  He says he wants to be a girl, and he will put things on his head (towel, etc.) to imitate long hair.  He used to sing in a really odd way; not using words, just different sounds, but he has stopped doing this.  He still sings out loud (but using real songs/words) all the time.  At home, in the car, at the store.  He has been hushed on the schoolbus by the other kids for singing.  Usuallly, he seems to get stuck on one song, and hewill sing it for a long time.  He also repeats things to himself under his breath.  Sometimes it's something that you just said to him that day, and sometimes it's something he heard weeks or months ago.  He also doesn't seem focused at times, and he never stops moving.  He has difficulty following two step directions, and the pediatrition said it seems like he has an "internal distraction."  He had an evaluation today, and it seemed very thorough.  However, the doctor said that it looks like OCD.  My friend is not happy with this diagnosis, and I agree with her.  It seems like there are a lot of little quirks that all stem from one issue, but they are not getting diagnosed together - speech delay at 2, auditory receptive disorder at 3 and now OCD at 4.  Does this sound familiar to anyone?  She has gone through the school, the pediation, and now the children's hospital for a diagnosis, but it doesn't seem like anyone can put their finger on it.

[tiredbuthappy]

I agree that it seems like something is a little off. But, it does sound like this child is getting therapies, correct? Through the school system? Does it seem to you like any of his needs are not being met through these therapies? Are his behaviors affecting him socially yet? I find that children under 5 are actually quite open minded and forgiving of peers who exhibit "quirky" behavior. Kindergarten and up is a whole different story, but chances are that in preschool his peers probably don't mind his behaviors as long as he isn't constantly harming or annoying them.

Anyways, the reason I ask is because at this age, many different conditions receive the same treatment. Let's say a child is autistic, but no diagnosis has been given. Instead, he has been diagnosed with sensory issues, speech issues, and low muscle tone and is receiving OT, PT, and speech therapies. In that case, does it matter that the label of "autistic" has been applied if all of his needs are being met?

It does sound like it may be more than quirks. It sounds like the repeating is more than something he finds amusing- it sounds like echolaila. This can be indicative of something, or not. Can extreme ocd explain some of these behaviors? Maybe.

How does he interact with other children?

So, here's what she can do. First, decide if the therapies he is receiving are helping. Does she feel like any of his needs aren't being met? If these behaviors continue, will he be affected socially. If it does, will he care? (If not, that may be another issue). She does have options. She can always go for another opinion. I would suggest she see a developmental pediatrician or a pediatric neurologist if she feels that the regular pediatrician has not given her the answers she seeks. She can also reach out to a local autism support group. I know there is one in my area that gives parents resources that guides them through the process (what types of doctors to see, what kinds of questions to ask, etc...)

Often we encounter parents in denial or who are resistant. At a workshop by an autism support group to the teachers in my school, the presenter said that if a parent feels in her gut something is wrong, they are usually right.

[margypops]

Most of my kids went through an obsession about books or something I never believed he had any disorder , it seems to be something new ..they also repeated themselves and didn't like certain materials next to their skin ...I thought it was normal childhood yet today all we hear is this disorder, or that disorder for what I consider childhood, when did it happen that normal behaviors took on such an exteme focus of abnormality ?    ..

[RockRose]

He sounds like my youngest son,  who is now 16 and doing fine.  I'm glad he was my third - if he were my first,  I'd have been VERY worried.  With a third,  if they're happy,  everything's okay.  ;D

He went from obsession to obsession.  First Christopher Robin from Winnie the Pooh, (he insisted his preschool teachers call him that,  which they happily did,  because everyone would love to have little Christopher Robin in their class!),  to Top Gun,  to Indiana Jones,  to Jaws.  Obsessions,  truly.  

He got into writing caligraphy in 2nd grade and copied the Declaration of Independence by hand,  it was gorgeous.  He would do sheets and sheets of things that looked very much like advanced algebra,  but they were gibberish.  Beautifully written,  you could mistake it for college math.  He worked tirelessly at creating old documents in 3rd grade,  perfecting aging the paper with tea or mud.  To an uneducated eye,  they were old maps or writings.  What a QUIRKY KID!  He also repeated stuff all the time.  One time at a swimming pool,  when he was 4,  this woman with a heavy yankee accent said "Kevin,  ya betta put on ya shooess".  Well he had to say that all day,  and into the next,  just like she said it.  We still say that sometimes.  He talked nonstop sometimes,  talking gibberish when he couldn't think of anything else to say,  just to make sounds.

This is a long post,  to say I bet this boy will turn out just fine too,  and they'll look back fondly on all this.