My 3 yr old son was born with Cystic Fibrosis, then when he was 5 months old was found to have hydro cephalus (aqua ductile stenosis)- he had a shunt placed at that time.

Now fast forward to the present, we have most of those issues under control, but are now dealing with his developmental delays. I'll list some of things he does and would like to know what you think. We have worked with in home therapists since he was 5 months old, and none of them were ready to say he's autistic- we even did the test (forgot the name) and he didn't come close, but clearly there's something wrong.

He is echolalic- he recites things he's heard on TV, most of the time it does not pertain to anything that is going on around us.

He is in his own world most of the time- you cannot ask him questions like "Are you cold?" "How was your day?" "Do you want a cookie?" He does not answer yes or no questions, does not ask questions, communication is very difficult for him. Never asks for us, will use 1 word requests "lollipop"

He has sensory issues- will not eat most foods, or try them- he used to gag and vomit, now he just avoids them. Most of his sensory issues are oral. He just started being able to blow a whistle.

He has to have control over his books- you cannot turn the pages or read- he must do it all. Just recently he has started bringing books over, and will allow a little interaction, then he's off to another couch & wants to be left alone.

Difficulties with transition- if he must stop what he's doing, or leave when he's not ready, he'll tantrum.

He does: play appropriately with his toys, makes eye contact, names items, is almost fully potty trained: 1/2 way, sings songs, cuddles.

Please let me know what you think............ thanks!

God Bless you. You really have some challenges there. 3 is a difficult age anyway, but keep an eye on him. My son's first indication came when he was 4, he wouldn't swing. He's 9 now and loves to swing. If it is indeed some form of autism, more traits will appear. My son needs to have everything on his desk in the same place. He too is very resistant to change, we moved his bed the other day, but since it's his space, I make sure I ask him first. The communication stuff is hard because of your sons age, but him coming over to you to "read" , is a start. Good Luck.

Hey there, Sherry. The lack of a clear diagnosis is maddening, isn't it? If your son had had a completely healthy start in life, but he started showing some of the symptoms you mentioned, its a fair guess that someone would probably suggest some flavor of autism. However, the cystic fibrosis thing muddies the waters, so you guys are stumping the docs at this point in the game. Is that about right?

You asked for opinions, so here is a completely uneducated, totally biased, and lacking-enough-information-on-your-boy opinion. He probably does fit the diagnosis of PDD NOS, but he may have gotten there via a different route than the kids who started out apparently healthy as horses.

Please remember that the various labels inside the autistic spectrum are just names for the buckets of behaviors your child shows. As your son grows older, some of his behaviors may improve wonderfully, and therefore any sort of autistic label may no longer fit. Autism is a brain disorder, but the diagnosis comes from how the individuals act with the rest of us. If your son seems bright (and he does like books, you said) and he is cuddly, as you noted, then he's got a great chance at getting much better. Furthermore, he may not exactly be Regis Philbin at the moment, but he does tell you what he wants. Those three factors are really terrific success markers!

One of the reasons you may not want to accept that he fits into the autistic spectrum it just plain ole statistics. What are the odds that your sweet boy hit the rotten-luck lottery not once, but twice in his short life? That's how we feel about our 5yr old, Cole, and what's helped me is to see that the two crummy things are probably related to one another.

My son was 14 wks premature & weighed a bit over 1 pound. For ages, we (parents, docs, therapists) thought he had a mild preemie hangover in the area of "responsive language". Turns out, now at age 5, he has enough funky behavior that the PDD NOS "label" does fit him. It was too hard to pinpoint his behaviors when he was little...I mean, how many chatty toddler boys do you ever really meet?

Anyway, did you consider that Cystic Fibrosis kids may have a higher incidence of so-called autism than the general public? I don't know if that's so, but I dug into the research and found that it is true of micro-preemies. What that means is that we have to look at a broader arena of therapy/intervention to see what works. By dumb luck, we found that a type of speech therapy done with geriatric stroke patients, for some bizarro reason, works great with Cole (FYI, he's had an MRI and he doesn't have visible damage, so no stroke).

Well, enough yakking about our boy. I only bring his history up because we too know what its like to say "is he really autistic or is it a complication of the obvious health issue?". You want a clear diagnosis because a) then you can form a game plan to help him and b) you're no longer in emotional limbo. The "not knowing" was agony for us...even worse than being forced to deliver a one pound baby. We just had to wait until Cole was old enough to really know if he fit the autism bill. I'm afraid you may be in the same position.

The good news is that if his behaviors ended up in the autism bucket because of his CF, then there may be many more avenues to check into for helping him. You may end up floundering a bit looking for the best kinds of therapy, but do not stop. No matter if you're just sitting there reading a Maisy book aloud to yourself and he comes over to peek, you are doing him good.

Regardless of what intervention or therapy you do, you are helping him. Just paying him undivided attention is therapeutic...try not to let the labels get you down. Plop down on the carpet and give him your time like you always have. He's already got your heart...now he just needs your strength.

Hang tough,
LeAnne

Wow, Geez- you've got me pegged! Seems you understand me more than most family members & friends do!!

You're right w/ the whole limbo thing, and the chances that my son's got 3 unlucky blows CF, which has nothing to do with Hydrocephalus, which typically is not related to Autism. And CF & Autism have no relation either. I really am bothered, alright, MAD, that my little guy has all this to deal with.

I appreciate everyone's kind words, it helps talking to people that are dealing with similar issues. Sometimes I feel like I'm the only one when I'm constantly surrounded by children that are progressing "normally". The fear of what my son's future will be vs. his peers, really troubles me. I try not to focus on it, I dont obsess about it, but I can say that here.

We have an appointment with a specialist (which we've waited 13 months for) in a few weeks. But it seems that even if we get a diagnosis, most of the therapies that my son is doing now will continue, not much will change. Thats what his therapists and teachers say. He's in an early start program at the public school- he even rides the bus- which happens to be his favorite thing in life (and he makes the sound of a bus backing up frequently- at home and school- uuuuurrp uuuuurpp!)

We had the appointment yesterday and my son was diagnosed with Mild Autism. He met with a highly regarded Pediatric Developmental Specialist for about 1.5 hrs. He scored 33 on the CARS (30 is the "passing score").
She was not on the fence about this at all, but is hopeful since his problem solving skills & intelligence are up there.

I have to say that I am quite angry inside. I just cannot understand why Cystic Fibrosis was not enough- or the hydro cephalus which required brain surgery, and now Autism??? I really feel for my little guy and its so damn unfair!!! Of course my anger is on the inside & my little one's are my top priority & will never see my hurt.

The doctor confirmed that the 3 issues are all unrelated- just 3 grand strokes of bad luck.

I was at the hospital yesterday- I saw the cancer ward, I saw kids in wheelchairs, etc and I know it could be worse. But when I'm home , my hurt resurfaces.

Someday this little guy is going to amaze us even more- the fact that he's evenalive is amazing in itself. But my god I need this to stop.

Thank you for taking the time to share your story. You are 100% right when you say that it is an incredible amount to have to deal with. Even though my son is doing great I still get upset when I think that my child's first few years were not what they should have been. I feel like my son and I had to miss out on the everyday fun and regular family bonding that we should have had. I am not a jealous person, but when I would see my son's friends outside playing and I would have him in the car driving him to speech therapy or we would have to miss out on neighborhood get togethers because my son had to do ABA therapy it made me depressed.

As far as thinking things could be worse, I do not think they could be. They have done study's with parents who had terminally ill children and parents who had autistic children and the parents with autistic children were more depressed. It is a very hard thing to deal with. I really think that ABA could help your child. I reccomend the book "Let Me Hear Your Voice" by Catherine Maurice. It is very inspirational and gave me the courage to start ABA.

As far as 30 being a passing score on the CARS test that means your child does not have enough characteristics to be qualified as Autistic. A score of 25 means no autism A score between 26 and 30 means your child has PDD an Autism Spectrum Disorder. My son scored a 26. A score of 33 is mildly autistic.

Try to stay strong for your child he needs you!!!!!! I would be strong during the day and then cry myself to sleep at night. I will be hoping for the best for you and your family and your wonderful little boy.