son keeps testing borderline asbergers?

Dawn - posted on 08/17/2011

this sounds like my son who is 4, doesnt like change, has to be in a routine, obsessed with numbers and certain toys they have to go everywhere with him, he looses control and screams goes red in the face wouldnt calm down then lashes out,like you say a endless list!. I think he has asbergers as well but I havnt been to see anyone about it yet I dont want a doctor to say its all in my head when I know it isnt.

Laura - posted on 03/01/2011

Hi Courtney,

Our journey started about 6yrs ago, we recognized our son had some language delay, sensory integration issues, his inability to make eye contact and be touched (he panicked when somebody wanted to hug him or kiss him) his twirling around and rocking movements, he couldn’t watch tv sitting down only upside down. We pushed his pediatrician with this behavioral issues, so he recommended start with a with some sensory integration therapy and occupational therapy. (You will laugh when I tell you my mother recommendation: everyday hugging, she said like a bitter medicine until he gets used to it, sounds barbaric and at the beginning was painful because he hated it, but now he don’t feel like running when asked for a hug, stiffly hugs people but he is ok. Still he doesn’t like it, but he won’t runaway.) After going thru this for about 5 or 6 months and see just little results, our pediatrician then recommended to go with a neuropsychologist, since he saw some traits for an Autism disorder.

At age 5 my son was diagnosed with ADHD, Mixed receptive-expressive language disorder and Asperger's syndrome. His intellectual functioning is in the superior range vs someone his own age but his socialization and functional communication are borderline in the impaired range. We started with sensory integration therapy, speech/language therapy, occupational therapy, social skills classes and we started him with Vyvanse medication. One very important thing our neuropsychologist recommended is try to engage him in some activities with regular kids, because he has to learn how to react to peer based interactions and group learning.

He is 9yrs now and goes to a public school on regular classes, he plays actively soccer, baseball and participates in our local boy scouts, he’s still a little socially awkward and that’s something that always be there and he knows that he is different but tries to fit in with his peers. Overall he is much better now, he learned tricks to be more socially accepted, like looking at the eyebrows when someone is talking to him so his face is not turned away, he controls his OCD about touching back, he still struggles with some obsessive behavior; sports really had made an improvement on his social life. It’s a long a difficult journey but kids with Aspergers can have a normal life.

Just a quick question, who is testing him? The school? Your pediatrician?

Tracy - posted on 02/28/2011

Courtney - We live in Maryland as well and my son is 11 yrs old. When he was 2 he was enrolled in the ECI program through our local public school system and diagnosed with PDD/NOS by their psychologist but that was because he didn't "fit" into any other category. When we took him the doctor's they dismissed me because he was the youngest of 4 and they just assumed that he was babied at home. When he started Kindergarten he was mainstreamed and we spent a year seeing a Behavioral Specialist at Kennedy Krieger with the same result as you, that he had Asperger's Tendancies but they didn't want to officially diagnose him at that time. He has seen multiple specialists throughout his young life and had been put on 5 different medications without positive results that we took him off of them. The ironic thing is that no one doctor agree's with another...so far he's been diagnosed with ADHD, OCD, ODD, Aspergers tendancies, possible fragile X, anxiety, depression.... which can all be checked off on the Asperger's diagnosis checksheet. Unfortunately without an official diagnosis he can't get certain services on his IEP. He's in 5th grade this year and had missed 17 days so far from being suspended from school due to his "non-compliance" aka temper tantrum. He is teased all the time for acting like a baby and calls himself weird but thinks these kids are his friends? He gets in office referrals for hiding himself either in the bathroom or under his desk because he get's overwhelmed. I get called at least once a week to deal with his "rage" as they call it. The school is going to put him on a Behavior Implementation Plan but personally I don't think it's going to make a difference since the school does not even follow his IEP plan or any of the suggestions I have given them when dealing with his quirks (which I got off of the OASIS website). It's frustrating all around and exhausting to go through doctor after doctor, meeting at the school after meeting. I know my son isn't the only one and I'm not sure why the school system isn't more equipt for these children who have these tendancies without labeling them. No Child Left Behind to my child just means that he's able to pass to the next grade without the school being responsible because he's "different".

Kristi - posted on 02/26/2011

I went to all different doctors from the time my son was three and still not talking and finally was referred to a neurologist and instantly diagnosed and put on meds that really help and the parent is the one filling out the surveys not the kids. My son was diagnosed with Aspergers and is on Strattera for ADD and Clonidine for sleeping and both together have really helped him. They also did a sleep study and CT scan to see what was going on in his brain. My son is now 10. The neurologist should be able to give you all the answers and if he doesn't try a dfferent one. Austism and Aspergers are neurological disorders not behavioral. Good Luck. Oh and the eye twitching is more of a nervous thing. My husband does that a lot when he gets stressed or nervous about something.

Sarah - posted on 02/25/2011

I feel for you. My son has been having issues for the last 13 years ( since he was 2 years old). he was diagnosed with PDD-NOS in 5th grade ( 11 years old) after he assaulted 2 teachers in the space of 2 weeks. After one incident, he was so upset that he made comments that the school took as suicidal and sent him to mental health on an emergency basis. he was medicated, but still had the rages on a regular basis. In 7th grade we had to pull him out of mainstream school and put him in a small charter school for kids with emotional/legal issues. Finally at the end of 8th grade his psychiatrist put him on an anti-depressant. It made a HUGE difference. He is now on tenex 2mg per day ( for adhd and motor tics), abilify 12.5mg per day and prozac 20mg per day ( both mood stabilizing). Since he started that combination 9 months ago, he has only had 3 rages, and one of them was caused by another student bullying him for a full hour before he snapped.

Aimee - posted on 02/24/2011

Worst case scenerio, I think I'd try employing some strategies used with Aspies/ASD children (charts/schedules/social stories/consider dietary changes) and see if any help-diagnosis or not. If so, approach the school for testing too...he may not be "diagnosed" but still qualify for an IEP which will help you get some aids/modifications in the classroom as well. I would continue to try to get answers, but knowing what it is doesn't automatically make it better. :-) My son was diagnosed (ASD) at about 30 months, and is now 7...each day can be a challenge, but in general he's happy and thriving! Best of luck!

Casey - posted on 02/23/2011

My son has been diagnosed with both Aspergers and AD/HD. A really good book to read is The Aspergers Answer Book...it has helped me a lot with getting him into routines and learning how to understand what he is going through. Charting, daily schedules, and so on have helped make my life a lot easier. He was diagnosed at 9 and I just found the book...it all gets easier.

Maura - posted on 02/23/2011

Hello Courtney,
I hear you. My son is now 14 and wasn't diagnosed until 5th grade. He had problems for years before. I was so relieved that I could finally start helping him. If your doctor will not make a dianosis, I would look for another doctor. I took my son to several doctors until I found one that I like. Brian is taking meds, and he definitely has his good days as well as his bad. I have him enrolled in an online school this year and it is really working out well. I would ask why they do not want to diagnose him? It takes a long time to get an appointment with specailists, I had to wait 8 months before a psychiatrist would see my son where I live. Tell them that it is urgent that you get the help you need for your son. A doctor would not stand by and let a child who was in a car accident go untreated, and it boggles my mind that they will not help you. I can understand your frustration. Good luck, Courtney
Maura

Fiona - posted on 02/23/2011

Hi Courtney, I know how you feel. We kept getting told that our first son had Asperger , but everytime we had him tested, he wasn't diagnosed with it. The specialists told us that he was just immature and that he would "grow out of it".
By grade 4 our son had hit and punched his way through the best part of the school year and was finding hiding places under demountable buildings and in bushes to chill out. After a meeting with the teachers at school (as teachers they can't "diagnose" a child and were cautious using the ASD label) they recommended we take him to a specialist that only deals with ASD children and get him tested again. We said we would do this only if they wrote a letter that detailed all his behaviours at school prior to this appointment. This they did. We are very fortunate to go to a school that is proactive and willing to work with the parents.
Two weeks before the appointment I sent a 10 page letter (basically one page for each year of his life from birth) to the specialist, detailing every "symptom" of the disorder, as described in "The Oasis Guide to Asperger Syndrome", what year they presented, how they presented, what triggered the "symptom" and how we managed these "symptoms" from a home and school perspective (what we had been told) as well as when his other medical conditions (including visual) presented and what treatment he was already receiving. Hence the 10 page letter.

I also sent a copy of every school report from kindy to grade 4 as well as various email correspondence between the teachers and myself. I figured I'd been to specialists before and in the short time they have to see you and form an opinion, I wouldn't remember everything that needed to be said. The reports were sent so that he could see where my son was developmentally, physcially and emotionally. There was a lot of paperwork.
By this stage, my son was not coping at school, we were at a loss because we couldn't work out what to do and we tried everything, and we had been told by specialists that there was nothing "wrong" with out child.
The appointment took around 2 hours and the outcome was a diagnosis of mild ASD. Where we live you need to have a pediatrician sign off on the diagnosis to get funding for the school and initially he didn't really believe that that was the correct diagnosis. However, he has since changed his mind as my son had a number of major meltdown at school while I was in hospital last year.
If you truly believe that he has ASD, then do your homework (it may prove to you that he doesn't) and make an appointment to see a specialist that only deals with ASD. Call the Autism Centre in your state/area for a name.
Keep hanging in there. Once the correct diagnosis is received, it is amazing how quickly these kids can "turn around".
God Bless.
Good Luck.

Lisa - posted on 02/22/2011

he sounds a lot like my 4 year old. he has a mild form of autism called P.D.D - NOS --> pervasive development disorder - not otherwise specified. I actually went to a child development center/Center for autism spectrum Disorders a in a city about an hr from our town. they specialize in Autism and any all disorders in the autism spectrum. I am not sure where you are going or what resources you have but that is what i did. He sounds like a really great kid i hope it all works out!

Mary - posted on 02/22/2011

Courtney~

I really wish there was an easy answer for this. Unfortunately what I have been told this far is that with children they need to rule out all the other possible areas first. For example..the same goes for my son..he is only 5, but has been diagnosed with ADHD Combined Type/ODD/Possible Bipolar/Mood Disorder NOS, and Possible PDD. I have been fighting to get him properly tested because his psychiatrist suspects Aspergers/PDD, but yet his teacher states she doesn't see any signs (he is only in preschool..and is only there 2 1/2 hrs). Needless to say, they have to try to get to the "core diagnosis" before they can truly diagnose a child. I am a little against this because like you "I want answers!" My son shows so many signs of Aspergers/PDD, and everyone around him see's these signs...so I am praying that the testing he goes in for in March will give me some kind of answers. I know that I have been told also to take him to a neurologist, but none of the neuros in my area will take his medical card. Not to mention he has had 2 EEG's done & the hospitals stated that they were normal. EEG's show brain activity, but they do not show everything. The psychologist that I am taking my son to in March asked me if he has ever had a CT Scan & I had told him no..so I am guessing that a CT Scan can show more than an EEG can. I am a psych major, but I have yet to get into this type of information. I have researched enough to know that my son exhibits a lot of the areas of concern when it comes to Aspergers/PDD, and it can be frustrating when you cannot get a correct diagnosis to have your child put on the right medication..if medication is necessary. Right now my son is on Ritalin & Clonidine & Ughhh I am not happy with the Ritalin..long story as to why. But it seems as though the Ritalin worked for about 2 weeks & now it's like he is on nothing. The psychologist explained that if my son does have Aspergers it may be that the medication is doing the exact opposite of what it is supposed to be doing. My suggestions to you are to talk to a neurologist, and make sure you keep a journal of what things your son does, what times he does these things, if there are any triggers that set him off...anything that you feel may be helpful in getting the proper DX. The reason I am saying this is because like you stated..."he shows his true colors at home"..my son is the same way..but has now started to do things around others!
I know I probably just rambled on & on ..and I sure hope i didn't confuse you..but I hope that it kinda shed a little light as to why they are not giving u an exact DX (diagnosis).

Best of Luck to you & your family!

Mary

Courtney - posted on 02/21/2011

Thanks Ericka - What is your son's official diagnosis? They keep telling me the same thing "autistic tendencies" but they don't label him as autistic. I just don't understand how someone can have asberger or autistic tendencies but not be diagnosed. Does your son have the eye blinking or any type of seizures? I have always thought it might be seizures but the doctors haven't tested him for epilepsy.

The last doctor that we went to just said he had asberger characteristics, they just had to deferr the diagnosis until later. So...we are done with that doctor and we are going to try working with Kennedy Krieger. We called them today and they are reviewing our case with a team of doctors. They said they will call us back in three weeks to set up appointments, etc. I am hoping we can finally get our answer so we can get our son some help. I feel like he is losing his mind and it is so hard to watch.

Yes, he has very angry outbursts where he kicks me, hits me, tries to scare me. He usually apologizes on his own afterwards but he says he can't control himself? He usually gets aggressive when I change the routine for some uncontrollable reason or tell him "no".

Thanks for the hugs and prayers and right back at you. Thanks so much for taking the time to write me. I would love to chat with you more to hear more about your son and how you are dealing with it.

Courtney

Ericka - posted on 02/21/2011

Hi, sorry to hear of all your troubles. Stay positive, I know how you feel. My son will be 13 soon, although we have a diagnosis it is still tough. my son is ADHD, OCD many others with Autistc tendencies. also on sleep meds. Eye blinks (also can be form of seizure) recently has been takin off one of his meds. We see a lot of stuff we haven't seen in years. as you said angry outbursts at home and school. just paryin for no physical outbursts, which seen in the past.

How long have you been waiting for diagnosis? It really shouldn't take that long if they have been thru everything. It is not helping him or the family by delaying treatment.
Have you keept up on callling the docs.? push the issue of needing to know what you are dealing with so you can get him the help he needs.

It is not easy. And I wish I had more for you as advice. but the truth is I am still looking for the same thing. I just want to send you hugs and prayers. there is a lot of books out there however. I have found a lot on amazon and ebay. they are very useful and give good ideas and tips on how to deal with every little thing it seems.
I wish you the best of luck with everything. Hope you get diagnosis soon.

Ericka

Diane - posted on 02/21/2011

An excellent resource to consider if you think your child may be somewhere on the autism spectrum: Diagnosis: I think my child may have autism:
http://www.tacanow.org/family-resources/...

Courtney - posted on 02/20/2011

I heard that they can detect through CT scans now..if you find out any information, please send it my way. I live in MD near some of the best hospitals in the country so I am sure there is somebody who does it. I just need to find them...

Courtney - posted on 02/20/2011

Thanks so much...we are just so fustrated at this point. I have taken him to Kennedy Krieger to be evaluated by their behavioral specialists and nobody has ever told us to have him evaluated by a neurologist? I really appreciate you leeting me know. Hopefully now I am get some answers. I am going to look into finding one tonight. I know that he has ausbergers...he just has been testing borderline on all of the scales. He is very smart and knows what he "should" answer on the questionaires..for example, "do you have alot of friends" - he would answer yes but in reality he doesn't have any friends.

Lisa - posted on 02/20/2011

Behavioral cant dx autism. Neurologist are. my son is 11 now and doing great.Pls see the neurologist.Good luck! I am also a nurse..

Katherine - posted on 02/20/2011

I forgot about that. I read an article in Science Daily that they can actually detect autism through CT scans now. I will try to find it.

Courtney - posted on 02/20/2011

So I take him to a neurologist to get tested? I have been taking him to behavioral specialists. Thanks!

Lisa - posted on 02/20/2011

First of all you need to take your child to neurology to get a autism dx not sure what doctors you have been taking him to. It sound like know one has really dx the child and giving you alot of dx. Take your child to a neurology and dont tell the doctor what the other doctor say just listen. I hope it help. My son is high fuctioning with autism.

Courtney - posted on 02/19/2011

Thank you!

Katherine - posted on 02/19/2011

Here is a case of a parent that has the same exact question as you, and the answer that was given.

http://life-with-aspergers.blogspot.com/...