Aspergers????

[Minnie]

My DS is (15) and a 9th grader with an ADHD diagnosis since 2nd grade. I just returned from an IEP meeting to discuss various issues he's having in adjusting to high school. The IEP team feels that he should be evaluated for Aspergers as he has a lot of difficulty in social situations.

Any idea of what this involves? Specifically one on the team felt he could have PDD? He is on ADHD meds and the concern is whether of not this is appropriate and what to do. Although he does very well in auditory learning and has a high IQ he has trouble with writing (ie. dysgraphia is the thought).

Any help on where to start learning about this possible new development would be appreciated. Right now my mind is just reeling with concern over the possible Aspergers dx

 

[KirstenB]

Our dd is much younger than your son. However, her pediatrician noticed developmental delays, and referred us to the developmental pediatrics team at UVA Children's Hospital. They spent a few hours questioning us about her, and observing her. Then they had an education specialist assess her cognitive skills at a separate visit. She was diagnosed with ASD. You may want to start with a developmental ped. Good luck and

 

[jodifla]

My DS is (15) and a 9th grader with an ADHD diagnosis since 2nd grade. I just returned from an IEP meeting to discuss various issues he's having in adjusting to high school. The IEP team feels that he should be evaluated for Aspergers as he has a lot of difficulty in social situations.

Any idea of what this involves? Specifically one on the team felt he could have PDD? He is on ADHD meds and the concern is whether of not this is appropriate and what to do. Although he does very well in auditory learning and has a high IQ he has trouble with writing (ie. dysgraphia is the thought).

Any help on where to start learning about this possible new development would be appreciated. Right now my mind is just reeling with concern over the possible Aspergers dx

I'd get someone competent to do the evaluation. Ask around, and be sure you know the evaluator's background.

PDD is the new "in" diagnosis. Evaluators are seeing it everywhere.


I'm on a message board with a lot of parents of late talkers. Many were told their children were PDD or ASD by school IEP teams, only to have that DX overturned by professionals.

Good luck to you and your son!

 

[koolaidmoms]

My DS (5) was diagnosed with Aspberger's in June. He too has a high IQ (156) but could not relate to peers or really understand emotions of others. We always knew something was "wrong" but we could not put our finger on it. He likes other children but just does not understand how they work.

We went to a Developmental Psychologist that talked to him, interacted with him for about an hour to an hour and a half. I answered all sorts of questions - I think over 200 about his habits, likes and dislikes and total aversions. Then the DP sat with me while son went to playroom. He discussed the findings and suggested a Developmental Pediatrician see him too.

Do a Google search and you'll get tons of information. Wikepedia really helped me give other people an idea of what it is.

As we told many of our family - "Nothing has changed in him over the last 3 hours. He is still who he is. We applied a label to him. He has not changed at all."

 

[mechurchlady]

I recently met a lady at a game I play online. She read my posts on SID and what I go through daily. She is diagnosed as bipolar but the meds do not work on her. Her list of problems points to SID and she is way worse than me like not eating anything that someone has taken a bite out of, oversensitive to pain and noise, and using only a certain utensil. Doctors slap a label on people even if it is the wrong one.

Kids too often cannot explain things to adults. Kids adapt and as they get older new things come out like dislexia, disgraphia and social interaction. Definitely find a doctor who is skilled in autism, SID, ODD, PPD and other stuff. Giving a child meds will not help it if it is the wrong medication and could cause worse problems. I found out about my SID from this board first then I read up on the subject and I had it. Too often we the patients have to do the research to find out answers. Mom's doctor finally took mom off of one med because of a side effect that should have caused fire alarms to ring in the doctor's head.

Dont panic of the possible Auspie diagnosis. There is a need to find the root cause of each symptom. It could be birth related problems or something else. Just remember that he is your son and he always will be the same person as he was before you learned he might be aspie. Labels help people get help like training, how to cope with quirks but that is all they are good for. No matter what he is a good kid and has a great mom who did a fine job raising him.

 

[bookwormde]

With your brief description an evaluation is long overdue, as is a review of the validity of the original ADHD diagnosis since it was done in a time frame where ADHD was a very prevalent miss-diagnosis for individuals with Autism spectrum characteristics.

If you want to know if your child has EF differential issues vs. ADHD just review him to see if he can focus (off meds) for extended periods of time on area of his interest.

I just got back from a seminar by Tony Attwood (if you have not read his book “The complete guide to Aspergers C/2007 it is a must, and is available on Amazon for $25), and he gave that example that he has about 100 characteristics which are part of the Aspergers evaluation, if a child has 80+ of these he(she) is Aspergers, if he has 60-80 he is PDD-nos (although he thinks calling it PDD-nos is ridiculously non descript). In the simplest terms PDD-nos is just an individual with Aseprgers characteristics who does not have enough to meet the clinical definition of but is still significantly impacted by the neurovariation. Just as a side it is his experience is that everyone has at least 10.

What will be involved in the evaluation is very dependent on whether it is being done by a clinician who is competent to do it (from my experience only about 10% of those doing it are). Try to find a clinician who “specializes” in Aspergers (at least 25% of practice involves this) and who has does continuing training in ASD for at least 200 hours per year by nationally recognizes works and clinicians. Usually these are found at major children’s medical centers.

Here is a link to a NIH page, which provides some info on what is involved, but there is a new draft proposal, which is much better and more comprehensive (but I can not find my link to it).

http://www.nimh.nih.gov/health/publications/autism/diagnosis.shtml

Basically the clinicians will have you and his teachers fill out questionnaires, give “tests” to you child to discover areas of weakness and strengths, an auditory processing evaluation is also done (although it sound like your child has already done one). A good clinician will spend 2-3 hours “playing” and talking with your child. Also they may try to eliminate other potential causes for any of the difficulties. There will also be an OT evaluation and a speech evaluation and some level of sensory variation audit.

With your description is sort of a “no brainer” that he is on the Autism spectrum it is just a matter of where and what services are needed to help him adapt to the neurotypical world to the extent that he wishes to.

It sounds like your child has “self adapted” pretty well so with the proper supports he should be able to make major additional progress. Just remember that while the “neurotypical world” creates challenges for individuals with Aserperges, the benefits of a “spectrum” mind are enormous so remember that he likely has abilities well beyond most neurotypicals.

bookwormde

 

[BeckyScott]

The bad news is, when you do find someone competent to diagnose, it's going to take 6 months to get in. If you're lucky. Maybe a year.

The good news is, that you'll have plenty of time to read up on Asperger's until then. And in the meantime, since the school brought it up in the first place, they should be willing to start putting things in place for him. They don't need a dr's diagnosis, they can run some tests of their own if they haven't already, and modify his IEP. That's why it's called Individualized.

And as Koolaidmoms says

"Nothing has changed in him over the last 3 hours. He is still who he is. We applied a label to him. He has not changed at all."

 

[ireland_nicole]

Don't panic; first, the school is not qualified to give him a diagnosis, and certainly not w/o any kind of eval. second, ask around in your area, but we got in with a good developmental psych. in about a month. Good luck!

 

[Minnie]

Thank you all for kind words, encouragement, and advise

I have been reading and researching ever since this has been brought up and I see characteristics of this in my son which has me worried But he is such a great kid that I just want to find a way to help him

Under the doctor's and the school's watch we tried one day at school off his ADHD meds and a found a couple things (1) definitely required considerablemore redirection as he was lest focused and less attentive (2) less apt to let the little things (no gray areas for him) bother him. Without meds I don't know that he would be able to focus enough in his classes so that doesn't appear to be an option.

I took him back to his doctor's yesterday and he lowered the meds (increased a couple weeks ago with poor side effects) and added another med (tenax) to try to help some of his school issues. He also felt that the school eval would be helpful but that he should definitely be seen by a developmental psych professional. Thankfully we have a university hospital only a couple hours away so he is going to work on getting him seen - said it could be up to 3 months.

Until then the school will do their eval and will work to provide him with ways to cope with some issues. Also, they plan to start the Kansas writing program to help with the dysgraphia (never heard of this either...)

Anyways, thanks again for all the support

 

[DisDreaminMom]

My DS (6) is an Aspie. It runs in my family and I have an aunt with it, among others. I have seen how poorly adults with autism fare when not treated or helped. I have had to be very aggressive in getting my son help over the years (he would rage like Helen Keller, everyone thought he was deaf, he was fixated on fans from an infant, and had selective mutism) and still find myself having to second guess a lot of educators and doctors who think I'm just over analyzing my son.

I finally took him to a big hospital (U of Florida) for diagnosis last year and was told that I'm not nuts and he does have high functioning autism, not PDD. The dysgraphia thing is a worry to me, too. My son can read, but also writes 30% of his letters and numbers backwards and I know for sure he gets "brain scrambled" when he has to read words next to each other (books). He can read and write the entire alphabet and most words upside down and backwards and can name all the continents from any angle he sees them. I'm guessing he hates reading books and gets distracted doing schoolwork other than math because it's hard for him to make sense of the words. I have been pushing for further testing for this and am being met with a "wait and see" attitude.

Hmmm, if I'd waited for everything else they told me to, my kid would be unable to speak, raging all the time, hitting other kids, screeching in their faces, and flapping his arms all the time, like he did three years ago. Now he's doing grade level work, functioning in a normal class most of the day and making huge progress. His social skills and focus need work, but that's going to be a lifetime thing.

So my advice to you is get the best Dr. to look at your son, be open minded, and help him as much as you can. Do you really want him growing up thinking he's stupid or not normal? Life is hard enough for your son, at least by testing him you can make it a little easier.

Your post made me think tonight that I am going to get really aggressive about helping my son with his processing/vision problems. I just had a teacher conference yesterday where we discussed it. They wanted to wait until next year, but when I read what you wrote, I thought, "What if he's in 9th grade and having a tough time with this because I did nothing?" I know he's smart, I know he avoids doing things where he gets scrambled. It's my job to help him out of it or make an accommodation around it. There are new vision therapies that can really help- I just get "we'll check into it" from the Special Ed teachers.

Just think if your son was born fifty years (or even 20) ago and no one understood what the problem is. How wonderful that we know what we know now. Tony Attwood's book is a Godsend, too. I wish I could thank him personally for giving me hope. Get it and read it. Good luck! You're a great Mom!

 

[MomOf2DisneyKids]

I just got back from a seminar by Tony Attwood (if you have not read his book “The complete guide to Aspergers C/2007 it is a must, and is available on Amazon for $25), and he gave that example that he has about 100 characteristics which are part of the Aspergers evaluation, if a child has 80+ of these he(she) is Aspergers, if he has 60-80 he is PDD-nos (although he thinks calling it PDD-nos is ridiculously non descript). In the simplest terms PDD-nos is just an individual with Aseprgers characteristics who does not have enough to meet the clinical definition of but is still significantly impacted by the neurovariation. Just as a side it is his experience is that everyone has at least 10.

I Tony Attwood!! I've seen him speak twice and have his books & dvds. He's awesome!

 

[CindyD]

Here are a few links our psychologist posts on her website to help newly diagnosied Aspies/ADHD/Autism. Hope these help!!

Autism Spectrum Disorders and Developmental Disorders


www.do2learn.com (some communication ideas that might help now or in the future)

www.ladir.org (has Louisiana disability resources)

www.teacch.com (a North Carolina program with a helpful website)

www.rdiconnect.com (information about the RDI intervention program)

www.autismbookstore.com (this site has an excellent on-line bookstore)

www.autism-society.org (ASA website)

www.autism.org (has a helpful section about controversial treatments)

www.aspergersyndrome.org (information on Asperger’s Syndrome)

www.thegraycenter.org (social story technique)

www.pecs.com (picture communication system)

www.shoeboxtasks.com (visually-clear work tasks)

www.tinsnips.org (practical classroom ideas and links)

members.aol.com/room5/welcome.html (classroom ideas)

www.udel.edu/bkirby/asperger (site about Asperger’s Syndrome)

www.mayer-johnson.com/software/Boardmkr.html (a program for making picture communication systems)

www.tonyattwood.com (website with information about Asperger’s Disorder)

www.babybumblebee.com (educational products for young children; highly recommended by parents)

www.abilitations.com (online store with educational and therapeutic products)

www.ldanatl.org (site with information about learning disabilities)

info.med.yale.edu/chldstdy/autism/index.html (Yale Child Study Center website)

www.ldonline.org (learning disabilities)

www.nichcy.org (National Dissemination Center for Children with Disabilities; information about state and federal agencies)

www.chartwellcenter.us (information about the Chartwell Center, a private school for children with Autism Spectrum Disorders in New Orleans that offers excellent teacher training)

ADHD and Learning Disabilities

www.chadd.org

www.ldanatl.org

www.ldonline.org

www.SchwabLearning.org

www.SparkTop.org (a site for kids)

www.askjeeves.com (homework assistance)

www.rfbd.org (Recordings for the Blind and Dyslexic)