Is Asperger's Hereditary? Another Son with Asperger's?

This blog has always had the little bit at the top that says, "Our experiences with 2 Aspies, maybe 3....", as our son MJ has Asperger's, my husband, and then we have always suspected our youngest daughter Rose to have it also.  Well, today, we might be adding another number to that tally.  We think our second son, Thomas, probably has Asperger's as well.

I suppose this is not just an all of the sudden realization that Thomas could have Asperger's.  All the signs have been there, yet we have chose to ignore them.  In some ways, his symptoms have been so extreme that they are almost shouting at us----"Hello!!!!  This is Asperger's!!!"  But why haven't we paid attention?

Back when our oldest son, MJ, was being diagnosed, the team of doctors mentioned to us that we should keep our eye on his younger brother, as he seemed to show some similarities, but I thought they were talking more about how he was really smart and reading at a young age like his older brother did.  

Thomas is our second son who is now 9 years old.  He's had his little eccentricities, but not in the same way as his older brother.  While he is very literal like his brother, I thought it was just from copying what his brother said.  He seems to have a lot of opposition when it comes to changing events or when something doesn't go the  way he planned, but I have always taken his whining and complaining as just that---stubbornness.  

Then there is the huge sensory issue.  Thomas cannot handle extreme sounds like high pitched noises, children screaming, a lot of commotion in a room, or he has always held his ears in pain whenever I vacuum.  As far as textures go, he freaks out by the feel of half of his clothes always complaining that they are not soft enough or scratchy.  No matter how hard I try to find the softest textures of PJ's, at night I always find him practically naked under the one and only fleece blanket that he will accept as he won't let any other blanket touch him.  He sleeps on top of his bedspread. 

As far as social things go, I've never really noticed that Thomas has problems talking to other kids or if he misunderstands social cues.  But then again, he is 9 years old and has never had a play date.  While he believes that "everyone" is his friend, I have never had another kid come over and ask to play or a parent ask to set up a play date.   He isn't invited to birthday parties.  Hmmm....

He has an extreme problem of not being able to look people in the eye.  I think it drives his piano teacher insane that he will never look at her when she is talking to him.  Actually he is usually looking anywhere but at the person talking to him.  He'll play the piano while intensely focusing on an object across the room.  How he does that and still plays so well is amazing to me at times, but it also seems not so good when at piano lessons as it seems he is not paying attention.  Well, that and how he seems to have this a little too long delay in his responses or you have to direct him to answer the teacher when she asks him a question or says "hi, how are you?" 

OK, so hello again!!!!  Look at all these things.....aren't they all just screaming "Asperger's!!!!"??? 

Well, no, we still just shrug it off.  

Actually, we were more concerned with a different problem affecting Thomas.  A few years ago we started to notice all these noises and facial tics with Thomas.  It began with sniffing, then gulping, swallowing, making clicky throat noises, then scrunching up his face and nose, making fish faces and blinking his eyes.  This seemed more out of whack for us ( I suppose we were used to all the other Asperger like traits) so we began taking him to doctors to figure things out.  There, it came to be that Thomas had Tourette Syndrome.  Tourette's is a condition where people tic and they can't control it.  Well, they may be able to suppress it, but it usually ends up exploding out after a while.  Now, many think it is the "swearing" disorder, but that is actually a form of Tourette's that is not always involved.  

So there----Thomas just has Tourette's.  Or so we thought.....

As we took him to different doctors, the thoughts of ADHD or hyperactivity disorders came around.  Well, yes, Thomas was the most hyper of all my children, and I swear I could not get him to focus on anything for longer than a minute!  It drove me absolutely insane!!!  He was always distracted by anything and everything!  While they evaluated him for that, they didn't seem to think he could be able to play the piano as well as he could if he had ADD or ADHD.  That, and our evaluations didn't match up with one overprotective teacher who scored him at all zero's.  We did learn that with Tourette's there is a lot of hyperactivity, so we just left it at that.

OK, back to the point of this post---the possibility of Asperger's.  Is it hereditary?  I believe it is, along with many other doctors.  But how much is hereditary and how much is just learned behavior?  I mean, younger brother has older brother and dad to look up to and they both have Asperger's.  How do I know what is him and what is just copied?  

Well, if all these characteristics weren't enough, a big one we have never connected is Thomas's massive obsessions.  I just thought he was an interesting kid who only wanted to play the piano for hours as a 4 year old.  Or, sure, my kid has obsessed about maps and atlases since he was 3 years old and spends hours just looking at maps, following roads, or making up games with atlases.  Sure, he likes to take the phone book into the car with us so he can go through every street and every map.  So.  Or, little teeny notebooks and papers.  He has to have every single thing or book that is mini.  It doesn't matter if it is some mini sized book about dirt.  It's mini, it's called "pocket" whatever, and he has to have it.  

I recently looked up an article that listed the characteristics of Asperger's in kids at http://autism.lovetoknow.com/Aspergers_Checklist, and although he doesn't seem to show the social clueless signs of Asperger's (well, maybe, I suppose he does think everyone is his best friend, but then nobody plays with him), all the other signs are there staring at me in the face.  That, and I was interested to see one of the symptoms they listed was "may have facial tics".  Hmmm...  

So now what?  Where do we go from here?  Do I need to have him evaluated?  Will doctors think I am crazy?  Do we just leave it be?  Well, this can be dilemma for another post.  But until then, I think I just might change my little description up there to "maybe 3.....maybe 4....."

Extreme Separation Anxiety with Asperger's?

This is Rose, our cute little "baby precious" as we like to call her.

As we've commented on here before, it seems as if she has many characteristics similar to those of her oldest brother with Asperger's.

She's always been more solemn and reserved as compared to other kids her age.

We've described her eccentric behaviors in lining things up and creating patterns with toys, books, and magnets. We've noticed she doesn't talk much to anyone but us.

Funny as it is, she used to have what we called "the look of death" in which she would give anyone who talked or looked at her. This was from a very young age. So funny as it was, but a little embarrassing when you have a small child who gives strangers this look when they only give her a smile. It made professional portraits impossible as she would give this look to them and never smile. Don't believe me? Well, here's a proof shot from a portrait sitting we were trying to do:

I laugh when I see this picture, but it's true, it was the "look of death".

Anyway, we have continued to just sit back and watch as she has grown older wondering if this is actually our 3rd family member with Asperger's Syndrome.

As she turned 3, she continued to keep to herself and not give much interaction to others. We would sit in the waiting room during her older siblings' dance classes and watch other children her age play and laugh while she would stay right by my side and not say a word. Other parents would ask how old she was and be surprised when she was often older than their children who were so bubbly and social while she would sit quiet and staring for the hour.

It's no big deal. She's just shy? Maybe she'll grow to be more social?

As you can see from the top picture, she can smile and she does interact with us at home, but it's like it's a whole different world to anyone outside of our own family.

I've noticed for the last while that while she does show emotion, it is often mirrored or copied by someone else. She will look at me and copy the expressions on my face. I could be talking about how she is going to have to eat vegetables and go to bed, but if I have an excited happy look on my face, then she will react by using my same expressions. She will mimic her brothers and sister in their emotions as well.

Is this normal? I suppose so.

I know she has all sorts of issues with textures as her brother did. She can't stand wearing all sorts of clothes. She used to freak out if her hands were dirty.

Anyway, no big deal, but recently we are having a huge issue, and it isn't something that was a problem before.

Separation Anxiety.

Now I know that is pretty common for young kids to go through, but usually that is when they are 1-3 years old. Rose is going on 4 and it just started about 2 months ago. She used to go to church class or extended family member's houses or neighbors/friends just fine. But then all of the sudden she won't go to anyone. She won't go to her class. She won't go to neighbors houses. She won't let anyone hold her except for my husband or I.

What is the deal? We can't exactly pinpoint any huge traumatic event, but she is just freaked out. It's not just a little thing. We sit with her in class and then try to leave and it isn't just a little tantrum she throws, but full blown screaming bloody murder like she's going to die or we're never coming back ever.

I don't know what to do. We've tried everything. We've tried explaining what's going to happen and that we're coming back. We've tried everything from punishment to rewards and even bribery to get her to go and stay where and when she's supposed to (church class, babysitter, etc.), but she is just not getting any better. I used to think she was just testing us to see what she could get away with, but after 2 months I can see it is not an act or orneriness, but she is genuinely scared if not terrified that we are not returning.

What can we do? It is really becoming a problem. It has become so bad that she will constantly "check in" all day long at home to make sure we are right there. If she hears a door open or close she will cry out panicked, "Mommy?!!!" If I go around a corner she will do the same. If we go anywhere in public she will cling to our leg at all time as not to lose us. It is just so extreme.

We continue to reassure her that we would never leave her and we will always come back, but it's to no use. Preschool is coming up and we were going to see if she wanted to try a dance class, but I doubt it's going to be happening unless it's the "Dance with Mommy's Leg" dance class.

I wonder if she does have a bit of Asperger's like we suspect, is it something that makes this Separation Anxiety more extreme or what? What should we do? As her social and emotional development continues to be delayed, we wonder if we need to have her evaluated for Preschool.

Another Aspie? Patterns and Early Signs of Aspergers

This is our youngest daughter, Rose.
She will be 3 years old in a couple of weeks.
She has always been a little more solemn and reserved than the other kids.

When it is your first child, you might not think anything of it, but when you have already had other kids and you have seen the difference in a child with Aspergers and a child without, things will become more apparent.

Now, we don't know for sure that this little cutie has inherited the Asperger gene, but there seem to be so many signs. She seems so similar to her oldest brother with Aspergers and even more strongly in some characteristics.

From very early, even 4 months old we began to see some signs. I remember going into her room and seeing her in her crib with all her dolls and stuffed animals lined up exactly every 3 slats inside her crib. It was weird. It was so meticulous to detail.

As she began crawling we would see new patterns created in her room. All the books and toys would be arranged across the floor in rows and squares and lined up.

Now, we're not saying this is a huge deal. Many kids out there like to stack and line up toys, but it is just something a little almost obsessive about the way an Asperger child will arrange things. They don't just play with the toys, they seem to pose them all and they have to be a certain way or else the child will get really upset. I remember my oldest freaking out because he needed all his action figures posed in an exact way or else he would become so upset. He was only 18 months old but was so upset because I couldn't figure out the exact millimeter of degree that a startrek figure's arm was supposed to be pointing.

Everywhere we go little Rose will line things up. In nursery classes the teachers are astonished and take pictures with their cell phone how bizarre it is. They showed me one day a picture of how she had taken every doll out of the toy sections and lined them up across the entire play area from one wall to another.

I wish I had a picture to show of that, but here are just little instances of her patterns that I have caught:

Above, lining up the snappy dolls....and below what she does with magnets on the fridge:

It is funny because whatever she is doing she has all mapped out in her head and if you were to move one of those magnetic letters she will freak out screaming and crying until it is exactly back to the way it was.

In many ways we have seen the signs similar of her brother. She doesn't respond to others very often. She has always been so solemn around others; hardly smiling, not talking so much, we have to instruct her to say hello or goodbye or things like that. There is little emotion.

She plays so much more alone and by herself. She has everything all worked out in a sort of play or storyline when she plays with her toys.

She walks a bit on her toes like her older brother. We hope that will not continue. It has caused a lot of problems with her brother.

She gets easily upset by change of plans and transitioning from one activity to another.

She gets very upset about different textures or when clothes aren't fitting a certain way.

We just kind of sit back and observe and wait to see what comes of her personality. It's not a big deal to us because she seems so much like her siblings, and she is such a cute girl. It is only when we are out around other kids her age that we see such a dramatic difference. The other kids are so bubbly and talkative and then she is just staring blankly into space while their parents look at me and think something is weird with my child or that she must be so much younger than she really is.

Well, at least we know how to work with Aspergers and how to make sense of their world somewhat. It doesn't scare me or make me feel bad that another family member might have Aspergers. We just take things a day at a time and we know maybe this time we'll have more knowledge to help us have a better understanding.

Do We Have Another Aspie?

This is my second son, Thomas. Such a cutie with such a personality, but as the years have gone by we wonder again, does he have Asperger's too? Does he show some of the same signs and traits?

Back when we were testing MJ, the doctors and psychologists hinted that we would probably have more than one kid genetically linked to their dad with the Asperger's traits. They spent some time with him and made a few comments, but he was only 4 then and I don't think they were ready to make any real professional opinions yet.

Much different from MJ's personality, but Thomas has such strong emotions and sensitivities. He absolutely can't stand any loud noises. He shrieks if I turn on the vacuum cleaner. He can't stand most of his clothes, socks, or shoes. He says they don't feel good. He says he doesn't like the way most things taste, feel, sound, or look. He can't handle bright lights or sun.

Sometimes I think he's going to drive me insane with his oversensitivities! I remember MJ being really sensitive by his clothes and textures of food and such when he was very young, but I grew used to it. With Thomas, I think I am just annoyed that he won't wear what I give him and he can't seem to find anything else that "feels good".

He's very smart like his brother, although he doesn't get into such intense thinking as MJ does. He did learn to read at 4 and skipped Kindergarten and is in the same gifted program as his brother. While MJ was obsessed with reading, Thomas developed an obsession of the piano. He taught himself to play and would play the piano for hours and hours on end. He wanted to look up and find new sheet music on the internet. He wanted to play through book after book.

There's that whole processing delay thing that I think goes along with Asperger's. As my husband says, it's just a matter of having to take the time to organize your thoughts before you can speak them because you want to make sure you say it the way you want it perfectly. Thomas seems to take a little to long to answer questions and respond, just the same way MJ and my husband do.

Transitions are crazy! He is always bawling that he didn't have enough time to do this or that or play or finish whatever.

Who is to know? I'm not out there looking to pinpoint traits or trying to prove he is an Aspie too, but it's good to keep an open mind if he does. He has always been so literal along with his brother about everything having to be called the exact thing that it is.

I worry sometimes that since he is going through the same teachers in the same program that these teachers might refrain from making any comments being that they don't want to have to deal with another Aspie kid or another set of instructions or accommodations.

We want the best for all our kids. I guess all we can do is just watch and observe and try to get the best for each of our kids no matter what their quirks, strengths, or weaknesses.

Toe Walking Continues.....

Here he is, my little ballet dancer. Yep, a few years ago he went to see the Nutcracker ballet and insisted on taking ballet. Why not? Others joked with us because MJ was always walking on his toes and so ballet dancing would probably be almost natural to him.

I stuck him in tap dance too, hoping that it would get him practice in putting his heels down, but he still has that awful habit of walking on his toes.

What do you do about this? If you've read our first post on toe walking, well, this was really what gave us the first clue that something was different with MJ. We've had so many various opinions and advice given to us on what should be done, but in the end, nothing has really changed.

We've been told he walks on his toes because it's a sensory issue with Sensory Integration Dysfunction.

We've been told it's because his heel cords are too tight and so they stretched and casted him for a summer.

We've been told to just do nothing and then when he was 6 maybe they would do surgery to cut his heel cords.

We once had him in physical therapy which wanted him to be in leg braces called DAFO'S. But that never happened.

All in all, it's not something he can't do---walk with his heels down. I mean he can if we sit here and tell him over and over and over again, but what kind of a crappy life is that?

Poor kid used to have to listen to it all day. It was like Hi, MJ, come play, PUT YOUR FEET DOWN, want some milk? PUT YOUR FEET DOWN! Get in the car, PUT YOUR FEET DOWN! And you would have to chant it all day long. I wouldn't do this. I didn't think it was right to have every word coming out of my mouth to my son as PUT YOUR FEET DOWN!!!

We used to have arguments with family members who couldn't handle this and wanted to spend the whole day pushing him down and yelling at him to put his feet down, but it wasn't worth it.

I mean, yeah, we worry just as much as anyone would that this is going to cause problems and hurt his bones or muscles or joints as he gets older, but what do you do?

I liked the idea to force him to walk normally, but the casting didn't work, and do I really want a kid with Asperger's who already has enough to worry about have to go around with leg braces too?

And even if I thought somehow he could be helped, he now knows when doctors are watching him walk that he walks down when they evaluate him, so then the doctors think I'm just a hyperchondriac over my son's symptoms.

So, what to do what to do? Bad habit? Something neurological? Something physical? What really is it, and will it cause him problems?

I know toe walking is something that has been connected to autism, and so is that just an added thing to his Asperger's? But don't we want to fix that?

Or do we? I mean, really, I don't care how he walks if it doesn't hurt him. I mean, I love MJ and so what if he is weird? He has many quirks, but that doesn't make him a bad person. I get angry at those people who are always trying to "fix" my kids' "issues". If it will cause him problems with his health or mentally, or whatever, then we will find a way to take care of it. As for now, it is the frustration still of wondering what IS right? What should we do if anything. We always ask and always bring it up to countless doctors, and so far they aren't so concerned, so we will let it be at that.

And, yeah, being a toe walker gives him those strong calves that the other little ballerinas seem to have a hard time being up and balancing, but our MJ does a great job!

The Need for Sensory Overload (or underload)

I've talked before about Sensory Integration Disorder and how before we had the diagnosis for Asperger's, that this is what they thought MJ had.

I find this as a large part of Asperger's. There is this need for some sort of over stimulus in sensory, or maybe there is the need to not have it at all. What I mean in this is that maybe a person might need to be moving all the time or touching and feeling, but then another person with Asperger's might be someone who hates touching or spinning or jumping.

With MJ, he always seemed to be spinning. Jumping, dancing and spinning, he had to be moving all the time. He didn't like to sit still. Along with his spinning and toe walking, it didn't surprise me when one day he came to me and asked if he could take ballet classes. He already didn't like any sports, and so I thought this would be something fun as an extracurricular activity that he could do.

Not just the spinning and moving, but another thing we always noticed with MJ was his lack of personal space. He was always overly groping people I thought. Now, I don't mean this in an ugly way, but he just would be a little too grabby or huggy snuggly up with people. Surprised? Most people who think Asperger's think anti social and don't like to be touched, but really it still breaks down to the not understanding social rules or norms so to say. MJ would sit too close to people, hang on them, snuggle up to them, and always talk to them right up to their face.

This has caused a lot of problems when it came to school or church. He didn't understand or maybe he didn't realize how close he was getting to people. Once at school another boy punched him in the stomach for getting in his space. It's nice for a boy to be loving and snuggly, but it's not great in any given situation. You probably shouldn't be snuggling on up with your new church teacher or whoever strange person you come across.

Now, as far as underload, or the need to not touch or feel---this comes across all sorts of ways. The whole walking on toes things was pinpointed to the sensory need to not have his heels touch the ground. Or what about the way clothes scratch and poke? As an NT, I don't seem to have that much problem wearing something a little scratchy or whatever, but give a stiff shirt to an Aspie and they will just about freak out. I find this more with my husband who thinks he is going to die sitting through a church meeting in a button up shirt.

Or, what about the need to not have people touch you? I am very lucky that my husband is not an Aspie that hates to touch or be touched as far as in a relationship, but at the same time he says that he can't stand to be sitting in a group in a small setting where his knee might possibly touch someone elses. It about kills him trying to focus on not moving his legs or feet in the chance he might touch another person.

We work with MJ as far as his sensory issues by letting him be in dance and spinning away, and then trying to teach him about personal space and when it's OK to hug someone or not. Everyday is a teaching day as far as "what should you do in this situation".

Sensory Integration Disorder--what is it?

Of course, even before seeing the therapists, I was on the internet all the time typing in key words trying to find out what was wrong with MJ. I would type in "walk on toes" and "sensitive to textures" or "afraid of heights" and out of everything, this is what I was coming up with--something called Sensory Integration Disorder.

So kids with this have some sort of extra need for like an over stimulus amount of sensory, like they may spin a lot or need to be moving all the time.

OR,

They may have this extra sensitive thing going on that everything is TOO much for them, like they can't handle the way things feel or taste. Well, not taste, but the way the food feels in their mouth. Or they are overly afraid of jumping or climbing or touching things.

Or it can be a mix of the two--an over sensory need AND an over sensitive thing.

This is what made sense with MJ. He could eat foods mashed up--like he would still eat baby food veggies, but if it was the chunks and real, he couldn't handle the texture. He freaked out if anything got on his hands or made him dirty. He couldn't handle tags on clothing, or if his pants or socks weren't perfectly stretched out touching his skin. And then of course he was 3 years old and he had never even been down a slide or swung on a swing really because it frightened him so terribly much.

But really---was this thing even REAL? Or did someone just make it up? It all sounded crazy.

When Do You Notice Something is Odd About Your Child?

Everything is normal, everything is fine, you think. This is your first child. Checkups at the doctor are fine. Maybe he doesn't start to crawl until almost 9 months, and maybe it is funny that he does a 3 legged crawl while dragging the left leg. And then maybe he doesn't walk until almost 16 months, but so what. And then maybe he doesn't talk until 21 months old, but no big deal, because it goes from first words to full sentences in less than a month. This really isn't anything. There are slight struggles with eating, and he seems to have a problem with certain things touching him, but I guess that's just him.

One day he is 3 years old and you sign him up for gymnastics. As he runs around with the other kids the other parents and teachers begin to shout out "Hey! Look at that kid! Look how he runs around on the tips of his toes! Wow! He must have super strong calves!" And then as all the other kids are climbing up and over things, your son won't even climb a ladder because he is terrified.

So all of the sudden, something is different. When did he start walking on his toes, and have I never noticed it before? This wasn't just sometimes. This was all the time and always. He hardly ever was flat footed. He stood on his toes, he walked on his toes. Hmmmm.......

We took him to the pediatrician who threw out wild ideas like Spinal bifada and MDS. She had him tested, but he was fine, so she referred us to a physical and occupational therapist.

At this point he was 3, and he was diagnosed with something called Sensory Integration Disorder.