There are many of us who either have a child on the autistic spectrum, have received a dual diagnosis for our child with Ds, or suspect that our child may fall somewhere on the spectrum.

Mikey was diagnosed with PDD when he was around 3 or 4. Pervasive Developmental Disorder. Those are scary words. But PDD is a spectrum disorder. That means that a child diagnosed with PDD falls within a wide range of abilities. Autism is a formal diagnosis for one end of the spectrum. Mikey has been diagnosed as PDD-NOS, Pervasive Developmental Disorder Not Otherwise Specified. That means that Mikey isn't autistic but he has a lot of the features of autism so he is somewhere on the spectrum. Because of this, Mikey is not a typical kid with Down syndrome.

Kids with Down syndrome are a bit more likely to fall into the spectrum (some estimates are as high as 10%). This makes some scientists suspect that autism may fall on the 21st chromosome which may lead to treatments. Meanwhile the treatments we have are specialized education (ABA) and medications. Mikey is going both routes.

Anyway, this was meant as a brief introduction to this new forum. Here we can discuss anything about our children on the autistic spectrum whether they have Down syndrome or not.

I just found this new forum. The day you started it my firstborn turned 15. He was diagnosed with Asperger Syndrome 3 years ago. This syndrome is also on the autism spectrum, but since the children speak early, it is not diagnosed too early. Poor social skills and intense interest in a narrow subject area are the hallmarks of this syndrome.

I am not dealing with a dual diagnosis with DS but will check this forum with interest.

A friend of mine has a son with Asperger's. He is very bright... brilliant in fact but he has a lot of trouble interacting with people. It's as if people are simply objects to him.

Well.. my daughter, who is 13... has had two docs medically DX her with ADD. Now... if it were me.. I'd say she had Asperger's.. seriously. But.. alot of traits, again, overlap. But... more so with Aspergers there is that social component which hits dead home with us here with Regan. I even had a gal come over for Russell.. from our local Autism Support Center (Judevine) and noticed it with Regan. She CAN make friends... but alot of Aspergers IS Regan... I see the ADD.. but I was always not convinced even those two docs specialized in it are LOL.. But.. I just am too lazy to take her to some doc so I can possibly change the label.. then end result is that I would still be doing the same thing as I do now with her.

Maybe I should be posting this in that heredity thread LOL

A.

My son does not have any friends. He was always picked on by the other special ed kids. Even the most bullied kids bullied him. So the label has helped explain the problems to us, to describe him when he's gone to new schools, and allows us to demand certain things of the school.

When we found out Grace had Down Syndrome, we thought in some ways it could be easier. People understand. With Tom, people expect him to be "typical" because he doesn't look different, so he is treated poorly in some situations when he acts different. And we just kept thinking his problems were our parenting or his willfullness. Down Syndrome is a well paved road.

I've thought about the hereditary thing with autism. I haven't even told my husband about the increased incidence of autism in children with Down Syndrome. But Grace is already making more eye contact at 9 months than Tom did at that age. I'm also hoping her femaleness will decrease the possibility.

Just for future reference, when did you folks get the inkling that there might be something else going on?

We suspected fairly early on. Even though Mikey had poor fine motor control he could spin things and stare at them while they were spinning. He could do this endlessly. I would say that we suspected that he was different than other children with Ds when he was around two.

See... it's facinating you mention age 2. It didn't really "hit" us until Russell was 4 and a friend of mine her son (w/ds) that was born w/cataracts too.. he was a couple years older or so was DX'd with the dual DX. And although Russell at 4 (heck at 2 for that matter) was not like ANY child w/DS.. except for my friend's son...with his new Dual DX. She kept saying.. you SURE? And my response was.. how come it JUST can't be DS.... Naively not knowing WHAT Autism was fully

So... we look into it more.. and when Russell was 4... I was meeting more kids w/DS... not just reading about them online.. I kept realizing kids half his age did more then him!!!! I would meet other kids say 2 and 3 w/DS.. and I realised... they "light up" when you look at them.. they LOOK at you, point.. JUST like they should! Russell had so many eye probs.. I thought it was just his eyes... our Ped opth in MO would say... "have you ever been to a devel ped" and I didn't quite know at the time why he'd ask that LOL. Then I asked him one day... is ALL this because if his eyes? He said NO.. and then I knew... I knew.

So... back to the 2 yr old thing.... looking back.. Russell has been like this from day one if you ask me.. BUT.... I always look back.. and tell people.. it's like he is the same boy he has been since he was 2 yrs old! Seriously... his recept language skills have come up some.. but truthfully? He is still that same 2 yr old w/DS... he hasn't progressed to the next "level". We just didn't know back then what it was.. we were just in love with our boy.. which.. of course isn't a bad thing!

So.. sorry to ramble.. but I find the 2 yrs old comment facinating....because... it was apparent.. just didn't know what it was then.

A.

Can I ask where to find this new forum? I have a friend with a son with Angelman's Syndrome, which is on the spectrum. His mom only knows of one other child in WY with it, it is pretty rare she tells me. One of the things about Angelman's is that those kids will never talk, her son though is having success with PECS.

Regarding Jackson, I often wonder if he also has something else going on too. He is very outgoing with people that he knows and does have eye contact. And he does like to say "HI!!!" to anyone we pass in the grocery store. But if we go to a friends house he is very shy around the other kids there at first and will cry and not want to be around them. And when he warms up, always has to be at his own speed, he doesn't really play with them, but plays near them. But if these same kids come to our house it's a totally different thing - he has no problems - could that just be that he's more comfortable on his own turf? Also he has always been fascinated with toy cars. He will line them up on the counter or the front windowsill where they are at his eye level, then he'll squint with one eye closed and get real close and watch them as he runs them along.

And the 2 year old thing. We just got the results of his triannual evaluation at school and in all areas he is either just below 2, at 2, or a little above 2. He seems behind most of the other kids with DS that we know that are near his age or even younger. He doesn't have much spontaneous language, but vocalizes sounds alot. He also has some sensory issues - like touch - he doesn't like it at all when a teacher or therapist tries to do anything "hand over hand". He has always had an issue with loud, sudden sounds. Even as a tiny baby, when we took him to his big brother's baseball games and the crowd made a loud sudden cheer at something the players were doing, he would explode, crying and he usually wasn't much of a cryer. I always thought some of his issues were because of the bad time he had after his heart surgery - he was on a vent for 21 days, they think he might have had a small stroke during that time. He had seizures for awhile after he came home - was on meds for awhile. But maybe there could be something else going on? What do you think? I've been wondering for awhile, but I think I've been trying not to think about it because he is such a funny, loving boy. I've been hoping that maybe he just isn't as "high functioning" as some of the DS kids.

Hi everyone, I hope it is ok that i am jumping in here. I have been reading alot because just recently I have been thinking about the heritary issue. I have 2 male cousins ....1 has been diagnosed with Asbergers (not sure when..but he is an adult now) and his son is severely ADHD. My other male cousin has a son who was just diagnosed with Autism...at 2 years old. I read that article that Tom posted about "Geek Syndrome". My cousins fit the mold PERFECTLY. Both of their fathers are of genius intelligence. Both are engineers and self proclaimed "geeks". I find it soooo interesting that this relationship has been made. My cousin who has Asbergers also has a male sibling who is paranoid schizophrenia (he too is a genius....he is a programmer when he takes his medication) And now of course...my Daniel has Ds. I am of course wondering the likelihood of him developing autism. He has no traits now..but he is only 10 months.

Anyway...that's my little story of my family. Just found that artice very interesting Tom on the relationship of intelligence and autism.

Coleen, autism is a spectrum disorder so there is a wide range of ability along the spectrum. Does Jackson have behavioral issues? Have you seen a developmental pediatrician?

My oldest child Keyrah, is 5. She currently has a working diganosis of ADHD and Aspergers.
Anthony, I have noticed, is not quite like all of the other children, even with DS. He will be evaluated very soon, as we suspect something else going on as well.

Tom, we haven't seen a developmental ped, I know of only 1 in our state and I haven't heard very good things about them. Jackson sometimes has some behavior issues, he sometimes goes through a "hitting phase" but he doesn't seem to be doing it out of meaness or violence - he's very gleeful, almost like he's trying to get attention. Then he'll stop doing it for awhile and then start again. He recently went through this at school - first time they saw it - and his teacher thought it might be because they were cooped up inside for many weeks due to the weather and couldn't burn off some energy. We developed a strategy to redirect him and it seems to be working - although he could have just come out of the "phase" again. He is also trying out mild tantruming now - but we and school think that since he tests at a 2 year old level he's doing this at a developmentally appropriate time - don't know for sure. I suppose I should ask his regular ped about all this, see if he can refer us to someone else maybe in Denver.

Oh, yeah - what's that other forum, so I can let my friend know about it? Thanks!

Russell does the same thing when interacting with other children and our bunny

A.

Courtney is the same...Hold on for your life when she comes!
She pushes, pushes, pushes....Her big thing is to sit at the top of any slide and just push everyone down it. Regardless if they want her to!
She just laughs and laughs and laughs.

Now I am really concerned with my Matthew. He will be 3 next month, but he is at the level of 2 years old kid overall. He pushes kids around or pulls their hair. He likes to throw stuff too. He is pretty aggressive and quick. I thought he just want to get attention and he doesn't like to share his toys with his peers. He is doing good with older kids (like 5 or 7 years old kid). He doesn't really good with eye contact and in the last 6-7 months he is wearing glasses (still struggling to wear them). He likes to see something far away. The opthomologist says that he could see far better.

Where shoud I take him to find out whether he has autism or not? Do you think he is possibly has autism?

Lydia... this is always a tough question to answer... especially since we aren't professionals Although we might know more then a few out there LOL My first answer would always be, with ANY concern we have for our children, not just an Autism concern.. but ANY... see your Ped and go from there.

But.... there also are some "key" things to Autism or ASD. I always try to ask parents... does your child communicate AT ALL? Does your child engage with you at all? Does your child point or gesture (if the child isn't speaking yet). How does your child interact with peers? Pretend play? Always act like they are in their own little world? Poor eye contact? Repeatative or odd play? Play with toys appropriately?

The list is bigger... but..there are some key things. Language and communication is a big component to me personally. Interaction with peers...pretend play. Not playing with toys appropriately... And then a child w/DS normally is going to be delayed anyway... so, it might be "common" for a younger child w/DS not to have some of these skills yet but will because the child w/DS just is delayed... but NOT for any other reason.

So.. sometimes it can be obvious... sometimes, because this is a spectrum disorder and has variables, it's not so obvious. And sometimes it's JUST DS LOL. There are plenty of kids w/DS that have behavioral and agression type issues... and plenty of kids w/DS that self stim or have OCD... but do NOT have Autism or ASD.

Sounds like Matthew might need some good old fashion behavior modification for the pushing of kids and hair pulling.

You can google AUTISM and search some websites to see the criteria and read more about it. In a different post on this forum I also gave a couple links regarding the dual DX if that would help too.

Hugs!

a.

For us it was the self-stimming activities that convinced us that Mikey wasn't quite like other children. Any kid can do them for a bit but give Mikey something to spin and you didn't have to pay attention to him for an hour.

His language is progressing in the last few months. He can say around 90 words. He is very friendly, but has hard times with his peers especially to share with toys. I really hope it'l just DS thing. One syndrome is hard already.
He does play appropiately in pretend play (kitchen, doll, cars). The one that really concern me is his aggressive behaviour (pushing and pulling) and lack of eye contact. He doesn't scream much. He tries so many ways to get my attention. He wants me to play with him all day long. He can play by himself for awhile and he is okay playing with kids that is higher functioning than himself (he likes to watch and follows/imitates the other kids). He is not good with his peers or lower functioning than him.

I have been doing research about autism too, it doesn't really fit to him except for the eye contact and aggressive behavior. I really hope that I am just a crazy and paranoid mom that wants to know on top of him.

Lydia, based on your description you have nothing to worry about. You can use some ABA to control the agressive behaviors but agressiveness by itself does not put someone on the spectrum.

Lydia... I ditto what Tom said... from what you are describing... sounds nothing like anywhere on the spectrum if you ask me. You said your son wears eye glasses? That could be the cause of the lack of eye contact depending on what is going on. Also, I have read from a few parents in the past that lack of eye contact is a "phase" so to speak and when the child develops further... they make eye contact. And yes, like Tom mentioned, you can do ABA or some kind of behavor modifications for the agression, hair pulling ect. When he turns 3 and goes into Early Childhood I would suggest you mention your concerns and get a behavior plan in place, be consistant at home too and that should help curb the adverse behaviors.

It's good you ask questions though.. I know it can be concerning.. and we may sound like paranoid parents... but you are good in asking what it's all about. Because even with NO Autism... at least you are aware that still the behaviors going on are probably not acceptable and something should be done. You don't have to have an Autism DX to know certain behaviors will get in the way of learning and everyone needs to work on the child not doing the behavior.

A.

Michel said that with this new forum we are going to make everyone paranoid.

Trust me on this... you will know if your child has autism. You won't need a doctor to give you a diagnosis.

thanks so much for the information. I feel much better now.

I have been praying for a fourm like this! Thank you soooooo very much! I looked and looked and thought "why can't there be somewhere for autisum or PDD that is like downsyn!" Thanks Megan

OK, I don't want to sound like an over-paranoid mum here, but I have had a few worries about Matt for a while. And I'm really confused.

On the one hand he has fantastic eye contact, always loves coming for cuddles and relates to older children and adults well. He doesn't relate much to kids his age, apart from his girlfriend Nadia, but I think that's more to do with his age/stage of development. He's really sociable, and adapts well to any situation he goes into. And comparatively, I guess, he's pretty able for a child with DS his age.

However, as an experiment, I recently took away his noisy toys - the ones where you just press a button and they do something. I wanted to see if he'd 'play' with other toys appropriately or constructively. He didn't, unless I was there to help him.

And this is what I saw. Matt loves to pick up his plate and spin it. Instead of using stacking rings to stack, he likes to throw them and watch them spin then fall. When you give Matt a pen to colour with, all he wants to do is stick his finger in the lid. He is fascinated with holes. He'll play with his Little People/Play Family cars and garage a while, but as soon as he takes the little person out, he is fixated with the hole under their feet. He loves my double bass so he can stick his fingers in the holes where the strings thread through. And he's recently become very fixated with putting his hand down the side of the sofa, or under cushions, etc. Oh, and he loves going round knocking over chairs.

Although we used to see glimpses of these behaviours before, since removing his toys these behaviours have occurred far more frequently. Is he just bored? He's still got other toys, just ones that demand a bit more on his part. I wondered if it was just boredom, becuase today, when I reinstated his toys we saw none of those behaviours, he was quite happy playing.

Matt's development was very quick as a young toddler, and at 20mths, he was doing amazingly. His social, cognitive and self-help skills were all above his age, for typical children. Only his physical and language development were below. He had 150 words/signs before he was 2yrs. He loved to join in with nursery rhymes doing the actions. He was stacking towers of 8 bricks at 18mths, and could throw, kick and catch a ball at that age.

Matt, although he has a lot of signs/words, doesn't use many to communicate. He'll answer direct questions, but won't initiate conversation, on the whole, unless he really, REALLY wants something. The only ones he uses spontaneously are book, ball, car chips, crisps, biscuit, drink, food, Wiggles (or any of the 8 Wiggles characters), Barney, daddy, again, swings and me.

I've mentioned a number of times on here, about how his development just seems to have suddenly stopped - if that makes sense. In some ways, he seems to have gone backwards, in others he stayed the same. In a few, he's improved - his big milestone recently being his no longer being in nappies. But whenever I go out I just sit there wishing Matt would play with the toys constructively, but even DUPLO bricks, which he used to enjoy, he can't play with because he's too fixated with the holes!!! Is this something he'll jsut get over, or is it a sign of somehting more going on?

He will play constructively, and enjoy himself doing so, if he's got someone with him to help guide him. If I do it with him, he'll happily do a jigsaw puzzle, or build things, or do colouring. He'll enjoy setting up a farm (though not imaginatively playing with them), he cooks on his little stove, he'll even do a doll's tea party, but he always needs someone to do it with him. IS it just that he's not old/able enough to do that alone, and he resorts to these behaviours when he's got no-one to help him?

Matt does not play imaginatively - apart from once or twice 'feeding' a doll. HOwever, this never worried me, as neither does Rachael, and neither did I as a child. As a child, I showed many traits of Aspergers - probably still do now! - so much so, that it took my sister a long time to get a diagnosis for her son (my nephew) of Aspergers, as everyone said his behaviour was just like me at that age.

So, knowing there is a hereditary link, I do worry that Matt also has some level of autism. Maybe even Rachael, in the fact that she is so literal, and can't do imaginative! To her, a stick is a stick (or sometimes a sword) and a stone is a stone. To her best friend, it can be anything he wants it to be - it's amazing for me to watch, as I'd love that kind of creativity!

But people that know Matt would say he's definitely not autistic, as he is so sociable. But it's those repetitive and seemingly pointless behaviours that concern me. From what it sounds like, these things become apparent around his age. But how much is due to just his DS, and subsequent developmental delay? How much is to do with his age? Matt's Portage worker thinks he's revisiting these things, as it's a stage all children have to work through, and as Matt developped so quickly initially, he bypassed this stage.

Lastly, at his last evaluation, although in all other areas his development has slowed down and were showing delays, in terms of social development he was well off the scale, and far ahead of his age! Go figure!

I'm just very confused. And I've been really down about it the last couple of days - as this possible realisation has come to me. Really down (and I don't ever do that!!!)

I'd really appreciate any advice, thoughts, etc? Thanks

Does he have any behavioral issues? How is he with his sisters?

NOt really - he doesn't always listen. If I tell him to go one way, he'll go the other! But if we're out for a walk, he'll hold on to Hannah's pushchair and walk nicely - or play his 'game' of stopping, starting and giggling! If he doesn't want to go, though, he'll refuse and only come when I walk off and say Bye. But I think of that as pretty normal.

He sometimes pushes other kids, especially older ones, but unfortunately that was a 'game' Rachael and her friends started with him, encouraging him to push them, and them falling over which he found incredibly funny. She no longer finds it funny when he's constantly shoving her, but he still does!

With Rachael he can play really nicely. I can leave them together in their bedroom (they share) in the morning, and they'll be happy enough. ALthough they're not into the same things. He loves to hug her, or play ball with her, or for her to read him a book. Most of all, they like playing rough and tumble together. If she's crying, he's always the first to give her a hug.

WIth regards Hannah, he can take her or leave her, most of the time. If she gets in his way, he pushes her over. If she takes one of his favourite toys, he'll grab it back, or sometimes, if he doesn't really want it that much, he'll let her win. She wants to be in on everything he does, and sometimes he's happy about that. Other times, he walks off. And other times she's pushed away. If Hannah's crying, unlike Rachael, he'll completely ignore her.

See, on the social side of it, he seems fine. It's just the strange repetitive behaviours that worry me. Maybe it's a sensory thing? Or he likes the sounds of the things clattering to the floor. He definitely likes to put noisy things near to his ear to hear them better. He's getting a hearing aid in the next couple of weeks, so maybe that might change that.

It just seems wierd to me! This morning, he disappeared for a few minutes, until I found him sitting there quite happily with his fingers stuck in the holes of my double bass. When I moved him, though, he was quite happy to go, so it's not like he gets cross, or anxious when he's not doing it.

This doesn't sound like anything particularly worrisome. In kids with PDD, the repetitive behaviors help them reduce their anxiety. It doesn't sound like Matt is doing it for that reason but more because he thinks it's fun. He sounds like a normal boy to me.

Helen, I think it's important to remember that at Matt's age, you're not going to see leaps and bounds in development like when he was little. They do stall out for excruxiating amounts of time.

Angela would stall out for months and months before I'd see anything new. It drove me CRAZY!

I had to laugh when you described Matt's facination with holes. Angela's at that age was any reflective material. We'd be walking through a doctor's office, and she'd catch her reflection in the leg of an office chair and plop right down to play with the 1/2 in reflection of herself.

She also did not (and still rarely does) play with things on her own. I have to 'set it up' for her. (see my reply to your post in the questions forum).

But really, in all your descriptions of Matt, he reminds me alot of Angela at that age. Now, other than her goofy behavioral issues, she's doing VERY well. She's reading, she does her math, whe does spelling, etc.

Leah and Tom!

Thanks - that's reassuring!

Have they ever suggested Angela may have autistic traits, especially with a brother with a ADD?

And PS - mirrors, etc, are out now! That was Matt's 'thing' in 2005, though it never went as far as chair legs!!!

I'll stop stressing now, and just sit watching him happily exploring every hole he can see!!!

She definetly has some traits, but our developmental ped assures me NO WAY does she have autism. (cuz I ask every time we see her!) Some things about DS are just very autistic-like, which sends parents into a tizzy wondering what's wrong with their kid.

I guess I just worry that, because my nephew's got Aspergers and Tourettes, and many of my childhood behaviours were quite strange, that I don't want Matt to have an added disability, and especially not one I've passed down to him.

I guess there's just a fine line between DS and ASDs!

Generally, when the behaviors interfere with learning then you need to be concerned with the behaviors. Your description sounds like Matt has simply found something interesting to explore.

Helen, I just wanted to let you know the description that you just gave of Matt's behavior is Dylan to a T. From the playing, to the pushing, walking, to the listening.

WOW! Sounds like we've got 2 peas in a pod then Rhonda, so I guess it's just a 'boys at that age' thing.