New here - searching for some answers

iVillage Member
Registered: 05-21-2003
New here - searching for some answers
7
Fri, 10-07-2005 - 11:45am

Hi all,
I've been lurking for a few days trying to find some answers for my 8 year old sons quirky behaviors. I'm finding that he has alot of the symptoms of Aspergers but none of the social ones. He also has some ADD like symptoms, tics, OCD type symptoms, possible auditory processing problems. Its all just so overwhelming and I'm afraid to start dragging him through a bunch of different exams. He thinks he is a happy healthy kid and I don't want to start making him feel like something is wrong with him. Up until now we have just accepted all these things as his quirkiness but lately I am feeling the need to pursue this further.
Since he was about 2 he has had various tics that have come and gone. At 18 months he started this hand twisting thing (like revving up a motorcycle) that has persisted so I think that this is a "stim" and not a tic. He only does this when he is very excited about something. When he was 2 he used to flip his stroller over to spin the wheels. He would stand and watch it and do the arm twisting. Then it was with running water. He started talking at 6 months and his language was extraordinary. He did not sound monotone or professor-like and was very enthusiastic about showing me things. Never did any imaginary play though. Around 4 he developed an obsession with fans. He spent the summer just staring at fans constantly, drawing pictures of fans, talking about fans. Preschool and K went fine. Only complaints were of him not settling down and being too silly, but he was a young Kindergartner and this improved after a few weeks in school. First grade was a nightmare. Constant complaints from his teacher about him being off in "la la land". He was also the youngest boy in the class and I felt like alot of this was just not being ready for the demands of a full day. Now I am homeschooling him. I now see that he does have attention problems. He is extremely bright but sometimes just doesn't seem to be able to do the simplest task and needs to have me right beside him directing him all the time. He also seems to have a hard time understanding what people say. Often says "what?". But if I ask "what did I just say?" he can repeat it.

He was recently obsessed with electronics and his knowledge in that area has amazed people with some of them asking me if he is gifted. Now he is obsessed with maps. Constantly looking at them, drawing them, making signs in our house. When we are in the car he carries a map and gives me directions on where to go.
He has developed a constant worry over germs now. He doesn't seem to wash his hands alot but is always worried that someone touched his food. If someone sneezes or coughs near his food he won't eat it. He hates change but never had alot of tantrums and was a very easy going baby. No one can sit in "his seat" or he starts yelling. He gets upset if I rearrnage furniture in his room. He is kind of a rule-enforcer.

He has alot of friends and often gets invitations for playdates. Has a great sense of humor. One of his friends told me he was the funniest kid in the whole school.

So, I'm baffled. He fits so many of the asperger traits yet none of the language-social problems. Oh, and he is also a good athlete.
The only social problem I see is that he is very shy in new situations and is reluctant to try new things. He doesn't have alot of confidence in his ability to do things.

We've been just accepting these things as who is he until now. I'm becoming more concerned because first of all his father has OCD and I'm worried about the germ thing. Also, I'm worried about this inattentiveness affecting his learning. And lastly his arm twisting thing seems to be getting worse. When he plays a computer game it almost looks like he is having a seizure. Oh, one more thing. His 3 year old cousin is obsessed with fans and washing machines. I just found out about this and it is really freaking me out.

I'm sorry this is so long. Thanks for taking this time to read this! Any advice is appreciated.

Anna

iVillage Member
Registered: 10-03-2004
Fri, 10-07-2005 - 11:11pm

Dear Anna,

I wonder if you would describe the nature of his many friendships, because at 8 years of age, it is interesting to me to know how he and his friends interact. And what they do on these playdates? Does he talk about his obsessions with them? Discuss their interests, or do they happen to already coincide? Does he play board games, how is he with competition? Does he have "back-and-forth" conversations? Does he pick up on non-verbal social cues, adjust his behavior to fit in with other kids? Does he talk about his friends to you?

I mean, every thing else you describe in great detail, which all sounds mightily like it could be Asperger's, but just a description of having friends doesn't tell me enough. He could be really smart and "getting by", or maybe he's not spectrum.

My son (also age 8) is definitely borderline PDD-NOS, but able to have great friends and conversations. We have had to help him learn, though. I will never know, since he was diagnosed young, but was always super smart and with language, how well he might have gotten by without the dx and all the extra help. He always was a good little actor.

The problems would come, IF your son is mildly on the spectrum, when the other kids' development really starts leaping ahead but his doesn't. I've heard other stories where this happened, sort of like their kids got left back in elementary school socially and never moved on into the more complex and dangerous social world of middle school.

The school thing really does smack of spectrum, though. Many ASD mainstreamed children need to have an aide to help them stay attentive. Our son is at a special ASD school, but were he not, we would consider homeschooling him as well. Anyways, this subject matter is of real interest to me!

Looking forward to hearing more on this from you,

Sara
ilovemalcolm

iVillage Member
Registered: 06-25-2003
Sat, 10-08-2005 - 10:11am

Anna,

Welcome to the board. I hope you find it a great place to be.

I have to say, that reading your posts I see nore red flags in there than not. I think it would be best to have him evaluated, just to be sure to be sure. If he is mildly on the spectrum (and it sounds mild, if there at all), it is better to know so you can implement appropriate supports.

My son has friends, gets invited on playdates, and is quite athletic. He is also high-functioning Autistic, just rarely extroverted! Yes, one can be autistic and an extrovert. Personality plays a role.

I hope this helps and wish you good luck.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 05-21-2003
Sun, 10-09-2005 - 9:25am
Hi Sara,
Thank you for your reply. I used to dread my son's playdates because he would just get sooooo wild. He would be so excited to have a friend over and would end up tearing around the house out of control excited. I would spend most of the playdate trying to get him to calm down. Now when he has playdates they are usually outside running around, riding bikes, playing ball. When they are inside they play Rokenbok or build large block structures and crash cars into it. He has one friend that is gifted that enjoys looking at electronics with him. His other friends are interested in it for a few minutes but he is so advanced in that subject that they quickly lose interest. I have seen him bore one friend with his maps. He was following him around with a copy of a map that he had made and his friend finally said "I'm not interested in maps!!" They never play board games but he is able to play them with me and is disappointed when he loses but nothing major.
He is not competetive at all. He is not aggressive and alot of his friends like to rough and tumble and he goes along with it but then tells me afterwards that his friend was too rough. He does have back and forth conversations. He talks with his friend that is gifted on the phone sometimes and they tell each other different stories (like "today we were stuck in traffic because there was a big car accident"). Sometimes he gets off in his own world playing with the hose or playing on the computer while his friend will want to do something else. I've heard one of his friends say "Anthony is obsessed with X now..." and I've also heard them tell him to stop doing something and he just doesn't listen to them (like squirting them with the hose). I usually have to step in and get him to stop. Other times he brings out his collection of baseballs and wants to know how many baseballs THEY have at their house and the friend just wants to play ball and isn't really interested in it.
I'm not really sure about non verbal social cues. What kind of thing should I be looking for? I have noticed that there are some things that he seems to have learned. Like asking if a friend is OK when they get hurt. Also he never played with stuffed animals when he was younger but now that a friend likes them he plays with them with his sister(at home not while on playdates). Her play is so much more imaginative though while his is usually running around making the animals fly or something.
How was your son diagnosed?
Thanks!
Anna
iVillage Member
Registered: 10-03-2004
Sun, 10-09-2005 - 10:21am

Dear Anna,

Again, your description contains plenty of possible red flags for very functioning autism or asperger's. I agree with Paula that you might consider having him evaluated. The homeschooling will of course mean you are not then fighting the school district for the appropriate supports and accomodations so that he could succeed in a claassroom, which by law he should be entitled for if he is on the spectrum. His difficulties in attending school are the REAL red flag here, IMO. Your description of his obsessions is also real key. But of course, I cannot diagnose and that will take a specialist.

Our son was diagnosed because we noticed between 2 and 3 that he was using conversation in a scripted way, also his temper tantrums were unusual. He had trouble calming down, he also seemed to "disappear" into activities and not "hear" when his name was called. Little odd things, little odd feelings of worry. We called the school district for early intervention evaluation, also our pediatrician sent us to a developmental pediatrician. Actually, we got dx of developmental delay with anxiety long before PDD-NOS, we only got that dx when he was 6 and he is considered borderline dx.

If he is spectrum, he is certainly doing very well. Are you planning on contining homeschooling? Thanks for writing, as I said, this is very particularly interesting to me because of my son. He also dies well on playdates of a few kids. He is not cool with team sports, and does sometimes have more trouble with board games with his friends, but not grownups, even occasionally losing.

Let us know what you decide to do.

yours,

Sara
ilovemalcolm

iVillage Member
Registered: 10-03-2004
Sun, 10-09-2005 - 12:04pm

Dear Anna,

One more thought based on your writing. We do not consider anything "wrong" with Malcolm. He has challenges. All kids do. The different therapies and programs we have put him in are not to "fix" him, but to give him tools and open up his comprehension and participation in the world. That's what all education is about, no matter how much a child requires or where he gets it.

We actually do not use the word "autism" with him yet, although I have discussed "sensory differences" and "challenges" when talking with him about his struggles and where he needs assistance. Also, he is and isn't autistic, so we use the word with "quotations", as it doesn't begin to completely describe him... But this is a little controversial, some parents believe you should use all the words with a kid right away. We know that we will discuss everything with him bit by bit as he gets older, BUT to us the medical diagnosis is more of a grownup understanding. We also have him in psychotherapy with a woman who specialized in high-functioning spectrum kids, and she agrees with us about our approach, particular to him.

Her work with him is really producing some wonderful growth. One of the best things that has come out of all the work he has done is an independence as concerns his well-being. He is learning how to self-calm, how to ask questions when he doesn't understand something, to explain when he has "missed" an instruction. I know grownups who are not learning these things!!!

Even when homeschooling, should you wish to go the dx route, it is possible to get services such as OT, social skills, etc. through the school district free of charge. I don't know if you are interested in looking into that, but I know it can be done.

Anyways, I believe how you feel about your son will translate to him. Malcolm is expected to keep learning even in areas he is more challenged than other children, and I feel that he does not experience himself as having something wrong with him. And we are working hard to ensure that he doesn't.

yours,

Sara
ilovemalcolm

iVillage Member
Registered: 05-21-2003
Mon, 10-10-2005 - 3:31pm
Sara,
I'm glad that you mentioned this. One of the things that has been holding us back from taking him to see someone is that we don't want him to think that anything is wrong with him. As far as he is concerned he is a healthy normal kid. I am worried that dragging him through all kinds of tests will make him wonder what is the matter with him. I am also wary of doctors. I've heard stories of kids being diagnosed with one thing and then switched to another. I mean, how does a dr decide that it is Aspergers and not OCD and ADD co-morbid for example? I also am not excited about trying any kind of medication. I don't want him to be a lab rat while they try and find the correct drug to "help" him.
Like I said before, we have been accepting these things as his little oddities up until now. I just feel like now I have reached the point that we really have to do something. I think that it is starting to interfere with his learning and I really need to find some answers to this. I have talked to his pediatricians over the years (we've moved alot) and they have all had a "wait and see" approach. One told me "no way is he autistic".
So how do I get him to go to see a doctor without making him feel like something is "wrong" with him? Our pediatrician gave us the name of a child psychiatrist. Do you think this is a good place to start?
Thanks!
iVillage Member
Registered: 10-03-2004
Mon, 10-10-2005 - 4:23pm

Well, you can tell him the truth, that you are having him tested to find out more about his learning styles. It sounds like you think going to doctors and having tests in and of itself will make him think there is something wrong with him, but that is not the case of you don't present it that way. Again, I want to reiterate, if YOU don't think there is something wrong with him, he won't, if you emphasize the specifics of what is going on.

For example, Malcolm wanted to know why he doesn't go to public school. We told him the truth, the classes in the public schools are too big (inclusion rooms here are 25 or more kids plus 2 teachers) and his ears and body are too oversensitive for that many kids in a room. It would be too hard for him to focus and learn with so many distractions. He is in a private school with small classes and bright kids who learn like him because that is the best place for him to learn. Malcolm doesn't see this as something wrong with him.

And when we had his last big evaluation over a year ago and he wondered why, we again told him the truth, that we needed to find out which school would be best for him, and just how best to teach him. This was also true, and the information we got was terrific just for that reason.

By the by, doctors can have different opinions. We have always paid to go to the best in the field, and so far that has really worked for us. Sadly, pediatricians these days are often the worst people when it comes to information about spectrum kids, and wait and see is terrible advice when there are possible issues... Just my opinion, but based on many stories like yours!

Anyways, don't you think he might already wonder why he is not in school with the other kids and if "something might be wrong with him?" What does he think about the difficulties he had in school? Kids do wonder. All we can do is reassure them as best as possible.

Also, again, the fact that my son has a borderline PDD-NOS dx does NOT say that something is wrong with him to me. I just think the world needs to be changed to be inclusive of people who operate differently than the boring norm. Your son is alredy operating differently, yes? Understanding more about him will only be helpful for everyone in the long run. And of course, he might not be spectrum. But getting a full evaluation will tell you so much about him, coming and going, VERY helpful, esp. in planning for his future and education!!

I would call the child psychiatrist and find out if this individual has background in testing spectrum kids. If you are looking for an evaluation, you need a neuropsych and developmental pediatrician, also sometimes a psychiatrist, but someone who is very experienced in dx'ing ASD kids specifically.

yours,

Sara
ilovemalcolm