Trying to help my son with correct diagnosis

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I found this site while searching for help sorting out social skills problems my 11 year old son is experiencing. He does not have autism, but he has Tourette's & mild OCD and fine motor delays.

As I read through this site, I start to wonder whether some of my son's behaviors that I see as part of his personality could be signs that we have not properly diagnosed all his neurological issues and he is not getting the help he needs. When we go to the neurologist we talk tics and obsessions, but I have never brought up all the subtle little problems that creep up on my son on a daily basis. For instance maybe I should mention how much time we spend discussing body language and practicing confident body language so his classmates won't zero in on him for easy pickings on the playground.

Actually, I don't know what to think. I don't want to pick apart his behaviors one by one and try to shape them to meet a diagnosis criteria, but my gut feeling is that he is struggling with school and life more than perhaps is normal and if he is not on the spectrum then there is likely something else going on.

I know you all get asked this question a lot, but does any of the following remind you of kids on the spectrum. It is so hard to be practical when one's child is involved.

I forget sometimes, because it was so long ago, but he received day-long play therapy as a toddler for a significant receptive language delay and was to receive further assessment for autism, but he improved enough so the testing was never finished.

Every teacher that has ever had him has loved him. He is extremely well behaved, loves to learn and has enough little facts running around in his head to impress them. He doesn't have any noticeable learning difficulties except in the area of writing due to the fine motor problems and for which he has a 504 plan. In those early grades, his social skills were adequate but they are hardly more sophisticated today in 5th grade than they were in first grade.

For example, the first day of 5th grade, he approached two new boy classmates and asked, very earnestly, if they would be his friends this year. He told me that by their reactions he could tell he had made a mistake, but he didn't know why and was devastated. When a girl told him he was being annoying, he thought he was admonishing her when he blurted out, "I'm just trying to fit in."

One of the things I've learned from this site that intrigued me was stimming/stemming. (not sure which spelling is correct) For years, my son has danced and twirled through the house like a ninja ballerina, occasionally slamming himself against the furniture and making noises like Star Wars sound effects. He does this nearly everyday, mostly in the evenings. I don't know why I have never stopped to wonder why he did this as it is not part of play. I guess because his older brother spent a lot of time just jumping up and down, flapping his arms and also slamming himself into walls that I thought it was “stuff boys did”.

He is ultra-sensitive. He cries a lot. (this is true since birth) It is his response for nearly any unpleasant emotion including anger. He cries after being mildly reprimanded and cries for every slight from other children and cries when worried about something. He will cry many times a day some days. When he is not crying though he most often happy and content. He does not seem to have a cranky or a sullen side.

He refuses underwear, hates shirts and chews the collars. He often talks too fast or mumbles. He has a good vocabulary, uses proper grammer, but has a lot of difficulty orally recounting any story or situation. In fact it is brutal trying to follow his story lines without asking a load of clarifying questions, but he looks me in the eye and uses hand gestures while he talks.

And he will talk at length about his current obsession. (he has had many over the years) In fact sometimes I joke to my husband that the only reason he spends all day playing minecraft is so that he can spend all dinner telling us every detail of what he did while he played and what he plans to do next time he plays. I admit that I do not always pay attention.

He has a poor sense of direction. He wants to accepted by the group of kids on the playground more than anything else, but when he joins them he has trouble figuring out how to play as part of a team. Like the social skills, he doesn't seem to learn physical things by observation very well. Teaching him to mimic movements have proved very difficult.

He wants to be hugged a lot. He likes to slam into me and lay on top me. Even at eleven, he clings to me, literally grasping, my arm usually, at all times when we are out in public as if he is afraid I'll get away or maybe he's afraid he'll get away.

Most importantly he is very awesome. He also has asthma, allergies and a painful digestive disease.

Thanks if you have made it this far. He has an upcoming appointment with his neurologist and later this month with the school and I would be grateful for any advice.

Are you sure he doesn't have autism? It could be AS but they are removing that label anyway in the new DSM. He could also have sensory processing disorder.

Hi.

No I am unsure whether he has some sort of mild autism or not. After reading through this site, I am starting to wonder if we missed something in diagnosing him that could be holding him back from being all he can be.

From what you say here I think it would be well worth raising your concerns with the neurologist. I have only met one child with Tourettes, but in some subtle ways he did remind me a little of my own son who has a diagnosis of Asperger's. It is possible that there is some overlap, but the neurologist should be the best person to disentangle what is Tourettes/OCD and what additional behaviours and communication difficulties could be attributed to autism.

Your son does also sound as if he may, as League_Girl has suggested, have sensory processing difficulties. The behaviours you describe are usually known as 'sensory seeking'.

And welcome to Wrong Planet!

There are definitely some things you said that would be worth looking into. It seems like along with some executive functioning issues, he has a hard time socially. I would look into it.

I have only quoted this part, because it did make me laugh out loud. You describe what happens with minecraft in our family perfectly. All the rest of your post, we experience the same or similar, but we are also still waiting for a diagnosis...perhaps by February, but not sure. All I can say, is if you have questions or concerns about this, pursue them, a mother's instinct is rarely wrong. Our son is 9, it feels like we have been fighting for him forever. It's hard sometimes, but really important that we do. Good luck!

cutiecrystalmom

Thank you all! I appreciate the feedback. Writing on here and your responses have really helped me organize my concerns. I'm really grateful. I'll just lay out all these things to the doc and see what he says. We also find out in a few weeks if he will get OT at school. I think he is going to get it this time because I just saw the meeting roster and a whole team of ESE counselors are scheduled to attend and in the past it has only been the guidance counselor and his teachers.

What I have learned is that an official diagnosis may make no difference, it's what you do that counts.

My son had an official diagnosis of bipolar, was on boatloads of meds and wasn't getting better. Some things about that DX just didn't feel right (like the meds not really fixing his issues), and another parent on the BP forum sent me here.

I started hearing similarities that made more sense than on the BP forum, so I started doing what the parents here were doing, and have had MUCH more success. As a matter of fact, our DS is off all meds now, and hasn't had a real meltdown in months. We did get him a school autism diagnosis, but still don't have an official medical diagnosis.

We are now really focused on working with DS style, rather than trying to mold him into another style, seeing resistance as a discipline issue. We now just work with and support what is, rather then spending huge amounts of energy trying to change him.

I agree. We actually do not have a medical diagnosis, either, but do have a school use one.

To the OP, I think the reason to pursue your questions "officially" at this point in time is that change in your son's life looming ahead next year: middle school. I can't tell you how many times in middle school I thought, "thank God we have an IEP. How do people without one get through this with their boys?" Organizational and work load requirements go up exponentially, and many kids are not developmentally ready for that, and especially not kids that are ASD (unless they are the super organized type of ASD, does exist). Maybe all that could be addressed with the labels you already have, I don't know, but knowledge is power.

I do read your descriptions and see my son in them, almost across the board. Which, of course, is far from conclusive, but it isn't nothing, either.

There are some on-line tests you can try, too, although you obviously have to take them with a grain of salt.

It is true for myself as well that I only seek further diagnosis' for my son to better understand what is troubling him and help. Just as was mentioned, I am apprehensive about middle school as well. He is socially immature and his tics mark him as different too which is tough to get away with in Middle School.

A new label or just a broadened understanding of the labels he already wears is what I am seeking because, like all of you, my number one wish is for him to have the best opportunities available to him for finding happiness and satisfaction in his life.

We have medicated him twice for short periods which was for his own comfort and not our own, but I don't think further meds will be necessary. The sensory stuff is intriguing and I know so little about it. I remember brushing him as per his speech therapist when he was two, but I didn't really understand what it was accomplishing. I will have to do some research.

He is such an easy going kid. I almost never have to discipline him. I am grateful and praise him a lot for his good behavior, but I secretly wish he would pitch a mad tantrum once and awhile, because then I would know something more about what is going on inside him.

Absolutely, what I meant though, is start before you have a diagnosis and see what works for your child. I was shocked that the strategies of other parents here helped, and actually drove how I answered the parent questionnaire, which in turn drove the diagnosis. Does that make any sense?

So, see what works now.

For instance, my child isn't change resistant, so I would always answer that question negatively, but I learned here that he is change reactive, so should be answering that question yes.

That is a good point and thank you for taking the time to help me. I never considered the subtlety between resisting and reacting and I see how I should. You have just give me an Ah-Ha! experience. I am quite apprehensive about not being an effective advocate for my son. I have a lot to learn.

I have been reading through the archives. It is extremely helpful to read of other ways approach similar behaviors. I agree whole heatedly about what you say about not treating certain things as a discipline problem or as issues of any kind. We tried to have kids for about 14 years before we had any so I used to have all sorts of elaborate ideas of what kind of parent I wanted to be, but it was my children, not me who guided what kind of parent I have become.

I also have a 14 year old son who I am starting to have assessed through a local psychologist, but it is so expensive that we are doing it in small steps.

Good luck! I'm glad to see how many people have found their way though all this and to make sense of it all.