Regarding my ds and his lack of a diagnosis...

[Anonymous]

This is going to sound awful, but I hate that my ds doesn't really have a true diagnosis. He can't really be this trying as a general personality
We have taken him to a psych who thought he may or may not have ppd, his preschool teacher was convinced he had aspergers, we took him to NIH to participate in a study, but he didn't end up qualifying. We have been told that whatever he may or may not have he has a very strong personality.
I read the thread the other day about how certain SN kids can be really annoying to parent and it all sounded so much like my ds. He is only 5 so maybe too young for a diagnosis? He shows so many traits of high functioning aspergers but he can be very social. He has friends but they find him to be very rigid and honestly just annoying sometimes
He isn't speaking to his best friend right now, the teacher asked them to sit boy girl boy girl at circle time last week and the best friend didn't follow the rules...
According to his teacher he can be very literal and very blunt. The other kids think its funny now, but by 5th grade I'm afraid he is going to be completely without friends
Any advice?
How can I help him ?
Dev Ped maybe?

[Anonymous]

Please go see a developmental ped. I just don't think you've gotten a good evaluation. Sometimes there is no diagnosis, but a developmental ped would then give you a laundry list of issues and suggest therapies to help. And, frankly, I wouldn't rule out an ASD from what you say. In my experience developmental pediatricians are really the best at diagnosing developmental disorders.

At the very least you need help and your DS needs help and developmental ped can do that, even if there is no diagnosis.

[Anonymous]

If he attends a public school ask that he be evaluated. It's free and a good starting point. Make an appointment with KKR, Children's and/or a developmental pediatrician then wait. By the time the appointment comes around, the school's eval should be complete so you can compare.

[Anonymous]

Thank you both! Who at the public do I ask? The counselor? The principal? What do I call it? Just an evaluation?

[Anonymous]

If there is a special education coordinator contact them. Otherwise the principal.

[Anonymous]

Anonymous wrote:Thank you both! Who at the public do I ask? The counselor? The principal? What do I call it? Just an evaluation?

In MoCo, you have to ask the principal. Asking the special ed coordinator or counselor doesn't entitle you to an assessment and if your school staff are not so inclined to help you, your request isnt' going to go anywhere. When I talked to our special ed coordinator, he told me he wasn't the person who could help and that I personally had to speak to the principal. He did give me the buzz words - like asking for an assessment.

[Anonymous]

In public school, sometimes the classroom teacher will refer to the school system for evaluation, so thats one person you could talk to.

it can be frusrating, cant it, in a time when there a million diagnoses, to not have one when there clearly is an issue. We've been told our child as every "label" and even medical issue under the sun before we got a dx...bc he had traits that pointed away from some of the dxes...

[Anonymous]

See if you can get in with Nathaniel Beers (I think he keeps hours at Children's in DC)...he's a great behavioral/developmental pediatrician

[Anonymous]

I do think there are issues that become clearer as a kid gets older, like executive function challenges and learning issues. The range of normal is just so huge when they are young. I know how you feel. My child is more rigid and difficult than kids I know with serious diagnoses. He is 6 now so we are doing neuropsych testing, which hopefully will tell us something.

[Anonymous]

We have been around and around trying to find an accurate diagnosis for our 6 yo, and we have basically given up trying to find the right "label". We are focusing on what therapies/interventions/meds will help her with her biggest problems first.

Is he in preschool or K?

I would start with a social skills group and some of the social thinking/social skills books you can read at home and talk about together. You can also try to figure out what his most difficult situations are and work on a personalized story about what he should do the next time that happens (google 'social stories' for examples). Then if you think you need more help after a few months, the social skills group clinician should be able to point you in the right direction.

[Anonymous]

I understand where you are coming from. We went through Child Find at 4 on the rec of our preschool, and did not make it past local screening. Fast forward one year to 5, and we did again, and he breezed through Local Screening (the first step, where they decided whether he would get further evaluation). At that time, FCPS did a host of testing (speech, hearing, cognitive, parent and teacher questionnaires as well as a lengthy observation by the county psychologist, who was also our case manager. In the end, ds was found eligible for special education for developmental delay/social emotional. The county psychologist mentioned that many of his behaviors were consistent with Aspergers, as did the play therapist we had worked with for months (the process was long, and we wanted to do something), but after seeing the developmental pediatrician, she felt that he was not on the Autism spectrum, though he did have some traits, and 100% needed accomodations. So, he started K this year with an IEP, and has had a really good year. He is very well liked, but as you mentioned, I do worry that as he gets older, friends will not be as patient with his extreme rigidity. I actually would not be surprised if down the road, we end up with a diagnosis with Aspergers...the dev. ped looked at all the evals that had been done, and met with ds (and separately with us) and said that as he gets older, things may become clearer, as we see if he catches up with his peers socially, or is left behind (not her exact words). As far as what we do to help, imagine this conversation from this evening. Ds is having a playdate tomorrow
Me: DS, when friend comes over tomorrow, he might not want to do only Egypt stuff (his current OBSESSION). DS: But he likes Egypt, just like me Me: But what if he wants to play something different? DS: Well, if he wants to pick another country, like China, we could play China games Me: What if he does not want to play games about countries? DS: Well, I guess we could play dinosaurs. but they better be from the same time period! For me, that conversation was a win, and I praised DS for being flexible. We use that word alot, our play therapist was big into social thinking, Michelle Garcia Winner, and Superflex, and DS really responded to those ideas.

[Anonymous]

I am reluctant to post this for fear of reprisal, but have you considered food sensitivities? I am reading Healing the New Childhood Epidemics and it really resonates with me. I have quite a few foods that I have to avoid in order to function properly; emotionally, physically and mentally. To some it sounds like quackery I'm sure, but my suffering was very real and not one of the gazillion doctors I went to could figure it out. Certain foods (anything with MSG or sulfites) cause a cognitive impairment leaving me barely able to carry on a conversation.

I am digging deeper into the issue now for my epileptic child. I have made some food/seizure links (i.e. if DC eats X a seizure will likely happen within X hours). Another interesting book may be Excitotoxins: The Taste that Kills, I have not read that one. Google scholar has some interesting things relating glutamates in the food supply and damage to brain cells. If not for my personal experience this concept would be more difficult for me to grasp. OP, I wish you the best of luck finding some answers.

[Anonymous]

I think that asking the school for help can be a great suggestion. However, it's important to understand that the evaluation process under IDEA is designed to answer the question "Does the child have a qualifying disability that impacts his ability to perform academically and benefit from the school environment."

Sometimes the decision ends up being that a child doesn't qualify, even though he/she clearly has a disability.

Other times all you get is an "educational" diagnosis, which doesn't have the specificity of a medical diagnosis.

Think of the school evaluation as one step or one part of the process, but don't get your hopes up that it will provide the answers.

[Anonymous]

Sometimes a diagnosis becomes more apparent when the child gets older and is confronted with greater challenges in school, etc. You may be on the right track that he in on the spectrum but that may be all you need to know right now...look at his areas of delay or weakness and address those: social skills class (and see Michelle Garcia-Winner resources to teach perspective taking, reading emotions and gestures, becoming aware that other people have thoughts and intentions and we can infer what they are by looking for clues); see and OT if there are fine motor or gross motor delays; talk about literal vs. figurative speech--there are kids' books on that and on understanding idioms; find a cognitive behavioral therapist or behavior consultant to address behavioral issues or set up a program to practice social skills and other skill deficits (self help sklils, for example--a good behavioral program will break down a skill into component parts, allow the child to practice those skills until mastered, and use positive reinforcement/rewards). Having the actual diagnosis doesn't add anything to the list of things you can work on...though it can help get an IEP at school...Good luck.