J Autistic??

[Just keep swimming]

Hi family,

Well, J finished all her preschool testing, IEP is set for March 2. They are STILL leaning towards J being "on the spectrum" due to very delayed speech, issues with large motor planning skills, and what they perceive as "little to no eye contact". I feel in the deepest part of my mommy heart that she is NOT on the spectrum.

She is nearly non-verbal, but can sign (ASL) nearly 200 words now, understands everything. Can do puzzles for age 5 with no problem (she is just turned 3. She can sign and say her ABC's and numbers through 20. Granted, her pronunciation is a bit difficult but those who know her well can understand her. She can do a 3 request "favor"(like "J, please go bring me a diaper, some wipes and some socks.)

The eye contact thing I do see with people she does not know too well, or if she is avoiding doing something she feels is too difficult to do. Neurologist, when tested back in June, did not agree with an Autism disorder, although she did not rule out that she might be on the lower end of the spectrum. Oh, and she does have Obsessive Compulsive Disorder (OCD), things have to be lined to just so, takes her 20 minutes to get into bed with her trying to get her blankets "just right". She lines up alot of her toys and gets pretty ticked off if someone moves something.

She is already able to pattern, such as lining blocks up, ie: red, green, red, green...

husband is in total denial that she could be on the spectrum, I am trying to keep an open mind and just let her grow up a little more. She is delayed in many areas (some up to over a year delayed), but in others, she is right on or wayyyyy ahead.

They have said they want her in the Special Education preschool, will have 2 teachers, a speech teacher, an Occupational Therapist (OT) and PT and 3 aides, for 7 kids in the class. Most kids are either in wheelchairs, or have walkers or have Downs. There are 2 who are just like J, much more functional but with great areas of delays. And as I said, I am trying real hard to keep an open mind, and praying this will be the right placement for her.

If we agree with the IEP next week, she will start on March 5th, 8am-11am, with the bus picking her up here in the am and then dropping her off at daycare afterschool. I am having minor mommy panic issues with her going on a school bus. But with me pretty much home bound at least the next few months, I am stuck with these arrangements. (Just had major back surgery a week ago, UGH!)

Anyways, just wondering what others think who have kiddos on the spectrum if this sounds like she could be or not. I know, I know, things will change as she grows and develops, just curious!

Hugs,
Vickie

 

[tiredmommy]

Vickie,
I think with the issues you've brought up about J that it would be prudent to take advantage of these early interventions. Whether or not she is on the spectrum is immaterial, what matters is that she is given the best shot at being fully functional as an adult.
I have a friend that would never consider her son autistic. He has speech therapy & Occupational Therapist (OT) in school. He is allowed to go to the resource room if needed. He is happiest around other people but doing his own thing (alone). He climbs the walls and goes into sensory overload. Is he autistic? I don't know. I'm not qualified to diagnose. But he is getting help for his deficits. That's what counts. {{{Hugs}}}

 

[BusynMember]

I agree with TM about the interventions. My son was in a class with kids of all types, and he THRIVED. He is almost mainstreamed now, at grade level, and rarely uses his aide. In fact, he learned how to act "typical" and most people have no clue he's on the spectrum. He makes ok eye contact with people he knows, especially family, but not with strangers. Most kids will look anyone in the eye. When you're in a supermarket and see a baby, don't they usually stare at you and smile if you do? Pervasive Developmental Disorder (PDD) kids don't tend to do that, although my son is much better now than when he was little. Also, my son was adopted from foster care and exposed to drugs in utero. Kids exposed to toxins in utero have a higher rate of Autism Spectrum Disorders (ASD). We got Lucas when he was two. Uneven development is typical of autism. My son could read at two, but didn't really converse or potty until five. He still doesn't know how to hold a give-and-take conversation, although he has a great vocabulary. Your child sounds pretty typical "spectrum". They can be brilliant and still be on the spectrum. It's the social skill cluelessness, speech delays, and other quirkiness that makes them different and they NEED interventions. They started to teach sign language to my son too, but he suddenly broke into speech at age five. He's very verbal now, but he's still on the spectrum. Still, the spectrum is maybe the only childhood disorder that usually really improves, however it doesn't go away. I'd take any intervention I could get and keep an open mind too. Don't let fear stop your child from getting the right diagnosis. You can probably take her to somebody who will diagnosis. something else, but that doesn't mean it's right. We had two incorrect diagnosis. (ADHD/ODD and bipolar) and that meant tons of medications that didn't works and delays in school supports. And we THOUGHT he was on the spectrum, but nobody believed us until we saw a neuropsychologist from Mayo Clinic who actually intensively tested him.
You may want to take this test, but it only works if you're very honest. I got this from a Pervasive Developmental Disorder (PDD) site.
http://www.childbrain.com/pddassess.html

 

[SRL]

I agree about focusing on interventions for now and keeping an open mind about the diagnosis. I've rubbed shoulders with a lot of parents of Autism Spectrum Disorders (ASD) kids online and I know of very few who were accepting or agreed with the the suggested Autism Spectrum Disorders (ASD) diagnosis at the beginning. If that's the direction they are leaning in and it doesn't make a difference in services then I'd suggest living with it for awhile, hang out on a forum specific to higher functioning Autism Spectrum Disorders (ASD) kids and see if it fits. It almost never feels like the right fit from just reading symptom lists at the beginning.

Just a few comments:
The eye contact issue is really erratic in a lot of Autism Spectrum Disorders (ASD) kids. My difficult child had good eye contact until around age 3 when he became more aware of the world around him then it worsened dramatically and now has been resolved through a ton of work in that area. This is only one pattern but you might find variations such as kids making better eye contact with people they know, better with adults than other children, etc. FWIW, I've not found parents to be the best judge of eye contact in young children and I'm not sure of the reason for that. Anyway, it's important to watch for but it's not a make it or break it issue for diagnosis at this young age unless it's very severe.

I'm not saying she has Autism Spectrum Disorders (ASD) because there are lesser known disorders that present similarly (as well as profoundly gifted kids but those are pretty rare) but most of the traits that you are describing do fall under the umbrella of Autism Spectrum Disorders (ASD)'s. It's the norm for these kids to have extremes in skills/abilities so that they are way ahead in some areas and delayed in others. Many-if not most-do engage in lining up behaviors during play including pattern formation and a lot have reasons (sensory, anxiety, and/or compulsions) that make them want things "just so". My difficult child used to take his Playmobil men and line them up in patterns that looked like a marching band on a field with lines and curves. And I would like a dime for every minute I've waited around for him to adjust blankets, clothing and especially jackets(!) until they feel right to him. Many are good at puzzles and other tasks that are visually oriented. The only exception I'm seeing in your written description is the ability to follow three step instructions--I'd say that's fairly uncommon in an Autism Spectrum Disorders (ASD) child of that age.

All parents panic at the bus thing and most kiddos handle it just fine. Often when the children are very young an aide rides along with the driver. I almost always suggest trying out the placement suggested by the school unless it's wildly inappropriate. Very few parents look at a sped class and think "Oh, that looks like the perfect environment for my 3 year old!" but a lot of them come out thinking that on the other end.

 

[Marguerite]

Grab the chances, give her the support and do what you would do anyway. Maybe be a bit more forgiving with her, because if she's being annoying it's not deliberate. The obsessive behaviours are not something you should try and stop, for example.

What worked for us (on top of using every support and intervention you can get) - work with her, play with her on her terms and using the things she's enjoying. Use these to help expand her world. For us, we helped difficult child 3 to communicate by using his extreme interest in reading numbers and letters. We wrote down small words that he was interested in ("STOP" is a good one - it's on stop signs and it's a valuable word for them to learn). We would read the words to him, show him the picture of the word and then we would role-play the word. I would encourage him to tell me to stop, then I would have a turn with him. Or we would do it together. It was a game. I made little disposable books for him out of a folded sheet of paper (three folds in half), stapled down one side.

We watched TV programs that he liked and we did it together. He liked game shows (numbers on the score) and he also liked TV shows that taught English as a second language to adults. In a way, these kids seem to learn communication as if it's a second language.

Don't take this the wrong way, but I hope your daughter IS autistic. It would be good news, considering the options. Given what you say about her already, she would be high-functioning and already is showing some high skill areas which will stand her in good stead later. Yes, it will be difficult at times, but from what you say I can see so much potential there within your grasp (and hers). Just keep working with her, playing with her and stimulating her. Find what she likes and share it with her.

Our understanding of autism has changed such a great deal - it's almost diametrically opposed to what people used to think. husband is grieving and in denial (first stage of grief). But there is joy there, too, in the wonderful things your daughter will learn to do. Don't worry about age-appropriate. Some things will take her a lot longer to grasp, especially some basic skills like maybe toilet training. Other things she will grasp years before she should (like her numbers). Expose her to a range of things and see what she seems to be attracted to. Read books to her. Write books for her about her, put photos of you all in the books, read them to her. I put printout pages in a photo album and gave them to difficult child 3. If you have a family outing, take photos and later write about the adventure, using the photos. Keep ringing the changes. Make your environment an enriched one. Enlist husband in something you feel he can handle with her - maybe reading to her, maybe playing a number game.

Keep a diary - just make notes of anything unusual she says or does, the good stuff, the fun stuff and the bad stuff. It WILL get better. A record like this is useful for doctors and teachers later on, as well as good for you to look back on and see how far she's come.

There are some good books - anything by Temple Grandin could help you and husband right now. Ross Greene's "The Explosive Child" can help you get a better grasp on behaviour issues. And "The Curious Incident of the Dog in the Night-Time" by Mark Haddon is fictional, but fascinating. It's written from the point of view of a teenager with autism. Don't let husband read that one yet.
"Son Rise" might help husband to feel happier about things, although the child described in that book sounds different to your daughter. But it IS written from a father's point of view.

Good luck and grab those opportunities!

Marg

 

[Marguerite]

Oh, and I forgot - the ability to follow multiple step instructions - yes, it's unusual but difficult child 3 can do it. In fact, he was doing it very early, which made me glad because "at least one of my children is normal!" because difficult child 1 can't mentally multi-task, he still has to write down multiple step instructions. He's getting a lot better at it, though.

If your daughter can do this, it says a number of things about her:
1) Her receptive language is much better than her expressive language, currently (a good sign); and

2) She's highly capable, compared to a lot of kids on the spectrum.

All good news, within the scope of the spectrum.

by the way, I'm not always sunshine and light on this subject. We've had some very rough times. But in most cases, it was made much, much worse because we were NOT listening to what difficult child 3 was consciously and subconsciously trying to tell us. HE knew at some level what he needed. Always has. And when we give it to him he thrives. And cooperates. He wants to fit in, he wants to be loved, he is very loving and outgoing. HIGHLY verbal (now) but also non-verbal (mostly) at 3. Definitely non-verbal at 2, except for numbers and letters. And some words which he read. Stimulating him as much as he could handle has been the trick.

Marg

 

[Just keep swimming]

Hi again family,

Thank you to all who responded!

I took the test at childbrain and J scored a 146, Moderate Pervasive Developmental Disorder (PDD).

When I looked at the questions, I read each one very carefully and so many of them were right on or at least partially true. I can't wait till husband gets home from work and see how he would answer them.

J does this repetetive thing, picking her fingers over and over. She has done this since we got her at 4 months old. She was substance, emotionally and physically abused by bio family. She arrived to us with "failure to thrive", took about 2 weeks of almost force feeding her every 2 hours to get her to trust that she really was going to be fed regularly and loved! :sad:

She had pretty good eye contact with us and those she is very familiar, but neighbors or even the pharmacist who we see almost every week, she won't look at them at all.

Marg, we have been doing alot of the things you suggested, husband reads to her as part of her nightly ritual.

This morning was "a morning!" The pants husband picked out for her, she refused to put on correctly, he ended up taking her to daycare with them on backwards. Thankfully we have a wonderful understanding Difficult Child provider and they make a game of getting her redressed. Oh, and husband forgot to put her toast on her tray before her oatmeal, so that went crashing to the floor.

She has toe walked since she learned out to walk. Has great difficulty with running "smoothly", pretty much a rambling, elephant like run.

If we can get an official Autistic diagnosis that would open her to soooo many services here. I will wait to see what happens at the IEP on March 2nd then see if we need to follow up with another doctor.

What type of doctor diagnosis's Autism Spectrum Disorders (ASD)? psychiatrist, pediatrician, behavioral doctor???

Thanks again all! I will read as much on Autism Spectrum Disorders (ASD) to I can understand it more accurately.

Hugs,
Vickie

 

[BusynMember]

Vickie, I'm gonna jump on the fact that she exposed to substances in utero

I already mentioned that my son was. His bm was a real winner--he was born with crack in his system. She named him and walked out of his life, high as a kite, probably best thing for him. When we got him we didn't know if his weirdness was due to this drug exposure or autism. The psycologists were clueless and either said he had alcohol exposure (he has no symptoms of that, although I'm sure he was exposed to alcohol) or he had ADHD. It was hard for anyone to get a handle on him, partly due to his in utero history and partly due to lack of knowledge about birthfamily. BM was hardly a fountain of information. She never showed up in court to try to get him back, and never talked to any social workers. Without a good history, it is harder to diagnose. There is a much higher rate of autism within kids who are exposed prenatally to alcohol and drugs. Your daughter could have alcohol effects, but it really doesn't sound like she has typical alcohol affected behavior, which is more like "I learned it yesterday, but I forgot it today" and an inability to understand right from wrong (no conscience). My son remembers EVERYTHING he learns, to a ridiculous degree! He has fantastic rote memory. He also has a strong sense of right and wrong and is almost pathological about not breaking rules. I would not worry that Autism Spectrum Disorders (ASD) means a useless life. It used to mean that, mostly because they only diagnosed low functioning autism, but your child is obviously not low functioning if she understands everything and is responsive. I'm not expert, but I would say she sounds very Pervasive Developmental Disorder (PDD)-not otherwise specified. She scored as Pervasive Developmental Disorder (PDD)-not otherwise specified on Childbrain too. If your husband is in denial expect him to not see things that you do see. I trust you. You seem to want answers, like I did. Autism Spectrum Disorders (ASD) kids improve. I am seriously relieved that my son is Autism Spectrum Disorders (ASD) and not bipolar or ADHD/ODD, like first diagnosed. Those disorders usually get worse, whereas Autism Spectrum Disorders (ASD) improves. If you want a link to a good message site for Pervasive Developmental Disorder (PDD), send me a private message. I don't have it offhand, but I'll look for it and send it. Many, many parents there are going through what you are now. "It can't be." "Is it?" "I think it is, but we can't get a diagnosis." "I'm not sure." Blah, blah, blah. The thing is, some days the kids act more autistic than other days too. It's a confusing disorder, but the bottom line is, you know in your heart that something is very much NOT right, and all of us want the best for our little ones.

 

[Just keep swimming]

Thanks MWM, I just sent you a PM!

Hugs,
Vickie

 

[SRL]

There are a number of different routes to go. in my opinion the best is to contact an Autism society in your region to see who in the area is good at dxing Pervasive Developmental Disorder (PDD). We had good experience with a developmental pediatrician and I think that's a good route to go with the little ones who have a more complicated developmental history such as yours. Pediatric neuropsychologists, Autism Clinics and (not top on my list for Pervasive Developmental Disorder (PDD)) pediatric neurologists are other options. Again, tap into your local resources to find out who handles this evaluation best.