Autism?

[kellyds]

I'm not asking for a diagnosis. I'll keep an eye on things and, if I see what appears to be progression, I'll have Joshie evaluated. (He is is set to have an evaluation at the new Down syndrome clinic in Portland after the first of the year anyway.) I've noticed a few new behaviors, though, and I'd like to compare notes.

Joshua has always been very laid-back. I've referred to him as "portable", meaning I can pack him up and take him anywhere and just plop him down, where he remains content. He has also always been an excellent sleeper.

Lately, he "freaks out" when I take him somewhere. He's not upset the whole time. He'll be acting just fine and, suddenly, he'll scream and flap his arms and then go back to being fine for ten minutes or so. He doesn't do this at home.

He also sleeps very little. This is brand new. His room is safe, behind two baby gates, and he's content to sit in there and push buttons on his toys all night long. I get up to go to the bathroom and notice him playing.

He has ALWAYS been a "dangler" and he has ALWAYS been fascinated by lights on the ceiling. Even when he was a baby, he would dangle his hand and stare at it for hours. Now, he dangles toy keys or anything else dangly.

He does not play with toys appropriately. He will look at something for a few seconds and then throw it. He does like rattles, which he will shake. He also enjoys combs and will try to comb his hair with them. I can elicit hugging and kissing of dolls and stuffed animals, if I do a lot of demonstrating. I can't think of anything else he plays with the way it's meant to be played with.

He is still learning signs and adding new spoken words to his vocabulary. He eats anything I put in front of him. He asks for "huggies" and will cuddle with any family member for long periods of time.

The yelling during social outings is what started me thinking. I found this article:

www.disabilitysolutions.org/pdf/3-5-6.pdf

I'm interested in your impressions, based on experience with your own children.

[Googsmom aka Jennifer]

I have no advise on Autism. Brook doesn't play with toys either. She wants Signing Time, color crayons and color book and books. Thats all she will play with.
Brook will be going to the Ds clinic too. Date not set yet though. I wanted to let you know I only live about 1/2 hour from OHSU (maybe 45 min depending on trafic) and I do have a motel if you are in need of a place to stay for the night to avoid the drive and stuff. Just an offer. Let me know. It's free of charge for you

[kellyds]

Does Brook color? Joshie will make a couple of marks with a crayon and then throw it. He isn't very interested in the marks he's made. He does like Signing Time and Love and Learning. He'll sit in front of them and try to make the signs or say the words himself.

We are waiting to go the the DS clinic until after the first of the year for insurance purposes. We will be taking the whole family, renting a motel with swimming, maybe doing OMSI and making a mini vacation out of it. It would be cool to get together for lunch or something, though!

Thanks again for telling me about the clinic.

[Googsmom aka Jennifer]

Well, she makes alot of scribbles...LOL and then yep, tosses it accross the floor. She will use every single color and then will start over. I step on crayons all day long...LOL She will go through a jumbo book in a week she loves to color so much. She does really concentrate on the color for a second then ...zoom, there it goes flyin'.
We don't have a pool Let me know when it gets closer and see what we can do.

[carolyn]

Hi Kelly,

My son John is now 9 years old, and every once in a while I get concerned that he has autism along with his DS. I am sure he does not at all have it, he is such a bright child, speaks in full sentences and is generally a wonderful. What I think happens to me is that I realize how different he is, and it kind of bums me out. He too would stare at lights for hours, my older kids used to say he was 1/2 moth! I have never let him be a dangler, or a flapper, as I knew it was not good for him to self stim like that. but there were times when he would try to do it for far longer than he should want to. As for coloring, show me a boy who likes to color! John requires lots of physical activity to keep him even keeled and happy. He does less teeth grinding when he has done lots of physical work- once he learned to ride his bike we hit pay dirt as far as exercise goes. Ditto for the trampoline.
I think eye contact is a huge thing- Does Joshua maintain eye contact? Does he seem "plugged" into the family? These are super important when sorting out the DS vs. Autism.

It is so tricky, and it just seems like they go through "weird" periods, where behaviors are odd and then it just passes.

also, of my 4 children, one other is a bit "high strung". If John did not have DS I pretty much promise he would be a lot like her. He does not like new things, changes in routine or noisy places. I have always taken to heart that people with DS are more like their own families than like others with DS.

Good Luck sorting this out!
Carolyn

[kellyds]

Thanks for the reassurance, Carolyn. I was watching Joshie say "Bye-Bye" to his daddy tonight and thinking he is pretty "plugged in" as you termed it.

Jennifer . . . you mean you HAVE a motel, as in you OWN one? LOL! I didn't understand what you meant at first. You must have thought I was ungrateful, saying, "No, Jennifer, your motel isn't good enough because there isn't a pool!" Ack!

I'll get in contact with you when the date for the eval is set. Thanks for everything. :-)

[CC]

I would just say keep a close eye on it. My Christopher who is 15 has the Dual Dx of ASD but didn't get the DX till just a few years back. Colin and I always felt there was something going on with him other then just DS, KWIM?

Anywho ASD along with DS... there really is a very wide spectrum.

Chris never was a dangler (sp?), has pretty good eye contact, very outgoing... Lots does not fit the ASD but YIKES sadly lots does.

So if I were you I wouldn't worry, but as I said keep an eye on it.

CC ~

[kellyds]

With good eye contact and being outgoing, what made you feel there was something going on with him other than DS? Just wondering what kinds of things to look for.

[Ericsmomma]

Eric also has the dual diagnosis. He is very loving, and has good eye contact. The first thing that worried us was his language regression. He actually said more words around the age of 2 than he does now. He also "hand flaps" alot, and has started walking on his toes.
He's really not a dangler, but he loves to make his stuffed "buddies" twirl/dance. He never really played with toys like most kids do...only likes his books, laptop computer toys, and stuffed characters. And TV...he's an addict! He would sit all day and watch his videos/noggin if I'd let him. He has alot of sensory issues, like food textures, temperatures (he doesn't like to drink anything cold except soda) and doesn't like his head/face messed with. He can become obbsessed with something like cupboard doors, and will continually open/shut them no matter what I do to discourage him. Its like he's compulsed to do the behavior.
I agree with CC, continue to watch him and see what happens. And if you are suspicious, then I recommend an evaluation from someone who specializes in autism. Maybe your pediatrician can help you find the answers. Also, did you talk with this teachers? therapists?
and get their thoughts on this?

[ALLISA]

Hi Kelly,

Erin has the dual dx......and I always credit this site for opening my eyes to it......

Anyways......for us......she NEVER had eye contact ( from birth ) she was in her " own little world". I was sure she was DEAF because she never turned to our voices.

As a baby she was content to play with her toes or rock....toys had zero interest to her. Still have very little interest at 8 years old. TV hold NOTHING for her.....she enjoys her music, her stuffed animals, playing outdoors, and anything she can flip....meaning....tupperware covers that are flat and she just flips them over and over......

As a baby she NEVER cried out in the morning....she would have sat in her crib all day and never even cried....never would say "mama"......just nothing.....

She, too does not play appropiately with toys, evertyhing gets thrown...it has improved a lot....but from age 3-5.....my household was hell.....to be honest......she broke every single dish in my house....no exgeration.....she broke every one od my kitchen chairs and half of my dining room chairs from tipping them over......yes.....my little 20 pound wrecking machine........

When she started school & I had to do our first IEP.....they asked.....what do you want for your child to get out of her first year at school ? I said " it's like she is in her own world, I want her to come out of her private bubble and join us".....well duh.......you think her teachers, therapists and sped people would have seen the HUGE red flags .......

It is a hard thing to see, when I look back now.....it is crystal clear, but at the time....it was hard....you expect delays, so you don't worry too much when you have delays, but then.....I knew that kids with DS were talking more than her, interacting more than her & I knew, based on what I had read here from moms in the same boat, that she had something else going on.

it still bugs me today that her school didn't see it or suggest it, I was the one who brought the idea to them and had her tested.

A local mom here in Massachusetts just started a dual dx parent group.....we met Nov. 1.....it was SO NICE to have moms who "get it".....we talked nonstop and it was a relief to hear others are in the same boat.....

PM me if you want......I could write all day on this subject......

[Googsmom aka Jennifer]

Kelly, no worries hun I want a pool too...LOL No I don't own it but I might as well. Worked here forever and only see the boss man twice a year

After reading through the thread you have some great advise. They have an ADHD "clinic" type thing who diagnosed Mary up at OHSU. Maybe they have someone you could talk to up there? Just thinking... they have everything up there, wouldn't hurt to ask I spose

[Radonna]

Kaden has the dual dx too and he sounds so much like Erin. Like Allisa said you "expect delays" and if you aren't really that familiar with Autism you just miss it. Before Kaden received his dx at 8 years old I had heard that kids with Down syndrome didn't "get" Autism. I don't know where I learned that but I was completely floored when the Down syndrome clinic said he had Autism.
He has zero interest in Tv, has never played with toys appropriately. He does not point to things. He is very "self centered" He constantly stims, sucks his hands, dangles things, slaps his face. He is a wrecking ball to. If left unsupervised for even a few minutes he will destroy the house. He's tips chairs too and pushes things off tables like the TV and computer, even cats. I can not ever leave him alone. He also has Pica eats non food items. I think I always knew that something was different about Kaden but I ignored it. Told myself it was his vision and found a million reasons why it couldn't be Autism. My Mom had actually mentioned it a year before the Down syndrome clinic did. I have even had people recently question his Autism dx I've had Doctors say "Well MR mimic's autism" and his deaf blind dx explains most of his autism traits. Kaden was born with cataracts so he's always had vision issues but he has not always been deaf. He was four when he started having trouble with his ears. Before that I had two ABR's because I thought he was deaf. He did not respond to my voice and just always seemed like he was in his own little world.

Like CC said autism has a very wide spectrum. What I've learned is many many kids can fall into that spectrum.

Even when you receive a dx you will still go back and forth between well is this "really autism" or could it just be this. Even as autistic as Kaden is I still have my moments but at the end of the day the dx is just a word. It explains alot, it helps just to know it wasn't I was too lax on his therapy, or I didn't give him enough early attention. It helps to know it wasn't that I failed Kaden by not doing enough that there is a reason that he has the delays he has. All his dx has really did is help me understand his delays. Most his stuff at school has stayed the same. There is more attention to his sensory issues but for the most part he gets the same now as he did before his autism dx.

I think as a parent you always feel guilty for what you should have done and I go back and forth now with had I gotten his dx earlier could I have done more for him. I don't know if this will come out right or not but Kaden dx of autism means more to me than it does to him. It hasn't hurt him but it hasn't helped him that much either.

[ALLISA]

Radonna.....those two kids of ours are like pees in a pod !!

It's funny because when I think of Erin....I associate her less and less with having Down syndrome and more and more with her having Autism....she strikes me as an autistic child....not a child with Down syndrome.........isn't that strange when on face value alone she so clearly has DS !!

I did make a choice 18 months ago to try meds with her.....and I am so GRATEFUL and happy that I tried it. It made a noticeable difference from day 1. She still needs a LOT of supervision....but I haven't had a broken dish or chair....or ANYTHING in MONTHS !! I picked her up from school and they happily reported that she had TWO aggressions all day (aggression can be throwing, hitting, tipping, flopping)....when we left public school....she was having like 15 an HOUR !!

So there is light at the end of the tunnel to anyone who is reading these posts and feeling stressed !

[wrblack]

And speaking of autism, for those who don't read the List or Patricia Bauer's blog,

www.patriciaebauer.com/2008/11/19/book-moms-acceptance-autism/

www.detnews.com/apps/pbcs.dll/article?AID=/20081119/OPINION03/811190362

snips:
What inspired Annie Lubliner Lehmann to write a memoir about raising her autistic 25-year-old son Jonah was not a success story or a happily-ever-after ending. It was not a triumph over silence, a disappearance of the disability through diet or a breakthrough in the obsessive mind.

What inspired her was the power of acceptance: acceptance that Jonah, like thousands of other individuals who suffer from severe autism, will never develop self-help skills, never achieve independence, never say "I love you, Mom" without being coached word for word, and never have a life where every hour in his day is not guided by others.

And when you consider that construct alone, achieving acceptance is the equivalent of climbing a mountain and reaching the summit.

She learned it from Jonah, her "Accidental Teacher," as she calls him. "The Accidental Teacher: Life Lessons from My Silent Son" is also the title of her book, which she self-published through AuthorHouse this year. It's available for $14.95 from Amazon.com.

The book has drawn accolades from educators and autism experts.

Frances LaPlante-Sosnowsky, associate professor of education at Wayne State University, who has a 30-year-plus background in special education, said: "I have never read a book about a disabled person that caught me from page one. I could not put this one down. Annie Lehmann offers a profound perspective on living with the reality of a severely disabled child. This book will be required reading for students who take my class in Special Education Administration."

"The Accidental Teacher" is as much about Lehmann's own self-discovery as it is about her son's illness. What she learns is acceptance of everyone's limitations, including hers and Jonah's.

"Acceptance is not real easy, though," she says. "Especially when all you're trying to do is just get through the day. But, as Jonah got older, my expectations changed and that's important."

....

It took almost four years of anguish and missed milestones for Jonah to be diagnosed with autism. At different points, he was said to have attention-deficit disorder, cerebral palsy and perhaps Fragile X Syndrome, an inherited mental impairment.

Lehmann writes of picking up Jonah from day care after missing him all day while at work. While other children gleefully welcomed their parents' arrival, Jonah would be sitting alone on the floor, fixated on a toy, not responding when his mother called his name.

"His developmental delays were obvious, but he didn't display the rigidity or resistive tantrumming often associated with autism," she writes. "In fact, he was overly docile and seemingly indifferent to his surroundings. What we didn't realize was that he had already begun setting up shop in his own faraway world."

At 4 months old, Jonah would have to be propped up for photographs because he couldn't sit without support. He developed odd interests like swinging doors back and forth. He was overly passive, not protesting if others grabbed his toys. At 16 months old, he was not walking independently.

Lehmann was obsessed with teaching Jonah language. Every move she made was accompanied by a running monologue. Sometimes she'd withhold things, hoping to motivate some utterance -- just one blessed word. But it seemed as if Jonah would rather forgo juice than say the word she was after. "Repeating a modeled word earned him whatever he wanted, but constantly doing this made life feel like an ongoing Pavlov experiment," she writes.

Through it all, Lehmann writes of overcoming her fears and having two other children, battling martyrdom, experiencing guilt over medicating Jonah and struggling with years of sleep deprivation. Although few and far between, there are grand and beautiful moments where Jonah seems comfortable, content even, in his own skin.

During a recent photo shoot at Jonah's home, Jonah has stopped circling the kitchen and has sat down on the couch next to his mother. Her arm is wrapped around her son while he, for the moment anyway, is completely captivated by the DVD "Snow White and The Seven Dwarfs."

Dark-haired with deep brown eyes and perfect features, you can picture a strikingly handsome and bright young man -- a professional, a husband and father.

"It's a loss," his mother says, using her fingers to comb his hair. "It's a chronic loss and I'm always reminded of it. I'll never find closure. It's a painful piece of my life.

"But I think of it this way: Pain can be a piece of life's pie, but it doesn't have to eclipse everything else in your life. I am extremely blessed to have two other healthy children, a supportive husband and the resources to take care of Jonah as we see fit. And for that, I'm very grateful."

[dannysmom]

Hi Kelly, our boys are about the same age, so I'll do my best to describe Daniel. I assume from your post that your seeing new behaviors...meaning you are wondering about the regression form of autism? I read the article and was shocked that it can happen as late as 6. With both kids I know..they were between 2-3. The worry never ends....

I do know 2 children personally who have experienced this form. Both of their moms stories are pretty similiar. Both children began to develop typically for a child with Ds....and then suddenly began losing skills. Within a few months this occurred. I personally know both kids, and both of their primary diagnosis is autism...with Ds being second.

So at this point, I'm fairly certain Daniel doesn't have autism. It's hard, cause I've never raised a child with Ds so there is nothing to compare him to except to the families we have met and online. I know he isn't developing like his sister (typical 6 year old).....but I believe is developing like a 3 1/2 year old boy with Ds. So that being said....here's a description of Daniel.

He can talk. He has over 100+ words maybe 200. Maybe 1/2 can be understood by anyone. His articulation isn't very good....leaves off the first sound of words....or has word approximations. Bu for blue...but clearly knows the color blue. He will try and say anything and tries very hard to speak and be understood.

He knows his colors. He can identify red, blue, green and sometimes yellow and orange.

He is interested in TV and has his favorites and will ask to watch them.

He can pretend play...feed a doll or put it to bed. He can participate in group activities like dancing (hokey pokey).

He follows simple instructions....such as put your cup on the table or hand Mommy the remote control. He has very good receptive language. He'll bring you a book when he wants you to read to him.

He goes to school (5) 1/2 days in an integrated preschool. He follows the routine, has friends and fully participates.

However, he has NO idea of safety and to take him to a public place without a stroller is VERY difficult if not impossible. He doesn't understand you have to stay with Mommy and Daddy.

He can play with toys but has a short attention span. You know those toys that pop up...you either press a buttom or twist a knob to make the character pop up? He can do those. He can open close, on off...in and out. But anything too complicated he cannot do yet. Simple matching....like match red with red or dog with dog. He can identify pictures from a book for things that he knows (dog, ball, keys, house etc).

He cannot ask why questions yet or where. Those skills aren't even emerging at this time. He can speak to ask for what he wants or to answer you...but can't initiate something like when we are in the car to ask "Where are we going"...or Why do we have to put our gloves on.

He sucks him thumb fairly routinely at bed time or when he is relaxing or needs comfort.

He has TERRIBLE table manners....still will throw food or tip a dish over. We've tried everything. Fine motor by far is biggest delay...he can use a fork and spoon but prefers his hands or to be fed.

He's ok in social situations...but you can't take your eye off him. For example, my daughters school had a dance last week. In the gym, probably 100 kids and their families with loud music. It took him a little while to warm up to the crowd....but after 10 or so mins he was on the dance floor with the kids. However, at any point...he'd make a run for the door and try to run out OR he'd run toward the snack table to grab a donut. He has NO fear and believes mom and dad will follow him wherever he goes. He's right...but at some point I'm hoping to get him to understand he can't run away.

He's very social and will initiate hugs and kisses. However, one of the strangest habits he has is reaching out and hitting passerbys. If we are in a resturant and he MUST sit in a highchair with NO food within reach or he'll dump over a dish.....he reaches out and swats at people walking by. We can't figure out if he's trying to get their attention or to perhaps give them a high fives....but I've had to apologize to many women who my son has patted on the behind while they walked by him LOL.

We don't really enjoy the experience of going out to eat with him. He's pretty difficult at mealtime. It's almost has if he needs to warm up to the experience of eating...and it's still a struggle at mealtime at our house.

As far as bedtime.....he's a good sleeper. Very rarely wakes at night and still naps fairly regularly for an hour or so.

Another behavior he has is throwing. We live in a raised ranch and have stair leading down to the front door. Daniel enjoys throwing EVERYTHING down the stairs. He's broken quite a few toys doing this. We try and discipline...and hopefully we will get through to him someday. It's hard to walk into my house and get around all the toys in the way.

So that's Daniel in a nutshell. Hope this helps in describing what is happening at our house at this time.

Here's a recent picture