how did you get the diagnosis?

Lesa - posted on 08/26/2010

There are criteria in the DSM which doctors follow to diagnose and those criteria were probably in the questionnaire you answered. You can look up the criteria yourself to see if you feel your son fits into this category. I have a daughter who is 19 and was diagnosed with Asperger's and she is doing very well now. Just remember, they have to learn everything socially that most of the rest of the world knows naturally. Be patient and learning these social cues can happen.

Fatma - posted on 08/26/2010

Hi.,
My 9 year old son was diagnosed Autism and with Down Syndrome., we are going to go a lot of doctors and school., still., no stop..,
with all my love..,

Sherrie - posted on 08/25/2010

My son went to a phychrist and he suggested a pet scan it was a two day test they injected die in him and certin parts of the brain had certin colors and that told him witch parts were working right I know how hard it is but most med docs don't know much about phsycology like phycrisrist know. my son was in forth grade when i found out it's a whole new thing to learn about so read read or talk to other people here to find out more information or stories about their kids.

April - posted on 08/25/2010

i was diganosed with austisum is 11th grade i am a new mom

Lyn - posted on 08/25/2010

My son has been diagnosed with a develomental delay since the age of 2 1/2, on an IEP with OT, Speech and this past year 1st grade he started becoming violent at home with MOM mostly (I believe I was a sounding board for him after school because nothing of the sort happened at school). His case manager and teacher felt they were misssing something with him and with my informing them of his
violent outbursts at home and speaking of animosity towards some kids at school they involved the psychologist at school. They moved up his 3 year re-eval by 3 months and after thorough testing for academics, OT and Speech or more importantly the psychologist did a psychoeducational evalution on him and was recommended to us to get medical eval done, while not diagnosing him, she clearly indicated it could be mood disorder/Autism/Aspergers/PDD-NOS and encouraged us to seek medical eval. With that we did see a clinical neuropsychologist who met with my husband and I once, then set out to meet with my son for 2 hours but only lasted 1 hour as she could not pentrate is intense pre-occupation. She did give my husband, myself, his teacher, and anyone else at school that dealt with him to fill out a questionnaire, then called my husband and I back and gave us the diagnosis. I was a bit taken back with how little she spent with my son, and came to this conclusion, but she did state that because she already had soooo much information on him from the school that it was not necessary. Now that we know, as I educate myself I can see that she is right. Funny thing is, his pediatrician sent us to CHAD to get an EEG and hopefully a MRI prior to all this because of his mood swings and my husband told the DR. I think he may have Aspergers and he said No, cant be because I asked him if he had friends and he name two classmates (clearly they are just that, classmates). Then in his write up to the pediatrician he said my husband and I have discipline issues because my son refused to get the prongs stuck on his head after we told them they needed someone to warm him up to the idea and the technician was like ok. go pee because you cannot move for an hour and half and I am going to,write x's allover your head, needless to say my son was not letting anyone touch his head like that. We are now seeing a psychotherapist once a week and this summer has been a long and lonely one for him but I am tapping into resources as best I can. Easter Seals is full of information for camps etc. I think I am finally wrapping my head around it and realizing that although I was skeptical I am glad I know what is going on so that now I can help him more. I have also asked if his psychotherapist feels there is more there or this is not a correct diagnosi if he would let us know and he said absolutely. Every child is different with this so get yourself educated and its all trial and error with what works best for your child. Just seen a news clip about a 19 year old who tried to molest a girl at a Christian Camp, boys parents told newsman he has Asperger's. I am new to this but this did not settle well with me as I felt he put all people with AS in a category that he shouldn't have. Would anyone else feel angry after hearing this from a parent? Like I said I am new to dealing with a disability but this really irritated me.

Deanna - posted on 08/25/2010

My son was diagnosed with Aspergers at the age of 6 after a questionaire I filled out and the teachers filled out. They also did an observation with him in their therapy setting and in school. I thought the questionaire was a little vauge and maybe I wasn't seeing things the right way but after the observation which they video recorded and later showed me pointing out specific areas where he " clearly " showed signs of Aspergers I researched a lot and eventually came to the same conclusion tehy did but unfortunately there is no diffinitive test I know of to test specifically for Aspergers. He is now 12 in a regular school and getting straight A's in GT classes

Lori - posted on 08/25/2010

I went through the same thing with my son when he was 7. They do base their diagnosis on a questionaire. My son's thearpist had also spent some time with him and works with other Asperger's children so he felt comfortable making the diagnosis. For a while I worried that I answered the questions wrong and it was my fault he had this label. But the more time passes and the more I understand about Asperger's and my son the more comfortable I have become with it.

Tami - posted on 08/24/2010

It was helpful to read all of your posts. For my Granddaughter her Sensory Processing Disorder was diagnosed at age 2 by a pediatric nurse practitioner and it was confirmed by a pediatric OT, She then started OT for about 3 years and that was very helpful. Aspergers was suspected even at age 2 and not diagnosed until she had her Kindergarten testing with the school psychologist and it was confirmed by a developmental pediatrician and it took about 2 yrs to get an appt with one. She is now in a social skills class and that has been good for her to learn the social skills that she needs. She also took swimming lessons for about 2 yrs.

My youngest daughter wants to possibly start the diagnostic process for her 3.5 yr old son. We are looking at her options. I found this great pediatric OT place and they have a PHD there who is a college professor and she has written papers on SPD and Aspergers and she has given speeches on it. I have to find out if she is qualified to diagnose Aspergers. Does anyone know if a PHD is qualified to do that?

Tracy - posted on 08/24/2010

I filled out a questionaire for my daughters pediatrician and then went to see her and answered many more questions. The pediatrician scheduled and did ADOS testing which is done alone with the child (no parent present) after this testing I was given the diagnosis of High Functioning Autism/ Aspergers. My daughter also saw a psychiatrist who spent about 3 hours with myself answering questions while my daughter was present and the doctor could observe her behavior. The psychiatrist had already read notes from a social worker who had gone and observed my daughter in her kindergarten class and had spoken to my daughters teacher. The psychiatrist gave the diagnosis of Autism Spectrum Disorder and advised to get a pediatrician (this was before the Pediatrician diagnosis). I would definitely ask for more extensive testing from a new doctor. Look into pediatrician that are recommended by child agencies. In my area I looked into Kinark Child Services and my region has a Behavior Management Services that helps give workshops on ADD ADHD and all kinds of child issues, most of the staff know what doctors are good with specific developmental issues. I made sure I was getting the right diagnosis so that I could get the right help for my daughter. I am sure that your classroom helper has seen Aspergers before for and something in your sons behavior made them think of it. ADOS testing will not only confirm the diagnosis but can also tell you the areas that are most severely affected. I learned a lot about my daughters behavior from the testing itself. Hope you find help.
Tracy

Cindy - posted on 08/24/2010

In first grade, I took my son to a psychologist whose specialty is cognitive testing. I knew my son was gifted, but struggled terribly with gross motor skills and daily tasks. She informed us that he capped out the IQ test, even though he skipped a section, and the best she could give us was 180+ / profoundly gifted. She also informed us that he would struggle the rest of his life with routine tasks. I knew there was more to this than being gifted. I started researching, as did my sister. We both came up with the same conclusion - Asperger's Syndrome.

In second grade, the school did testing for their gifted program. He skipped three sections and was uncooperative through most of it and still scored 156. They also commented on his difficulties with routine tasks. So we took him to a psychiatrist who had him take a battery of tests. She diagnosed him with ADHD and a Non-specified Autism Spectrum Disorder.

After a year of unsuccessful treatment, we moved James to a Pediatric Neurologist. Within minutes of meeting James (after looking over all his other test results from the Psychologist, Counselor and Psychiatrist) the Neurologist diagnosed James with Asperger's.

In 6th grade we had James evaluated for an IEP. The school did more testing. The results showed equal results for Autism and Asperger's. So they listed him as Autistic so he would receive more services.

Now he has moved to the Jr. High School and they have switched the diagnosis to Asperger's to pinpoint the services he receives.

It sometimes takes approaching it from all angles to lock in the diagnosis. Second opinions, even thirds and fourths, are valuable. Don't hesitate to get them.

Bonnie - posted on 08/24/2010

Find a developmental/behavioral pediatrician, to get a more comprehensive testing and evaluation conducted. Most insurances cover them. They are the only pediatricians that can find and give the diagnosis, with the authority and papers to back it all up. With forms, and interviews, and hours of testing one on one and individually, with parents, and or kids.

For my son, we have a parent interview with his pediatric psychologist in early Sept. She should have a diagnosis for us by then. We have also been referred to a pediatrician who works with all kinds of meds, for all kinds of kids/young adults, who need them. He will be also testing our son to see if he in fact needs meds to help him focus.

I wouldn't accept just a doctor looking at my kid for 10 mins and having us/his parents, fill out a questionaire just to throw a diagnosis at us, that may or may not be correct.

We were referred to our specialist via our family doctor.

Tracey-Leigh - posted on 08/24/2010

my son got diagnosed at four and is now 15 he has adhd asperges and is on the autistic spectrum he takes the concerta once a day and it seems to help i had to go to my hospital to the children and adolesent mental health department they tested him for six weeks at 2 hours each day this gave them the answers to what i had been puesting all the time .He has yearly reviews and has to get his height and weight tested every 3 months but it seems to be helping and the CAMHS are very helpful. i hope it will still help when he leaves school next year for further education it has made me a lot happier

Karen - posted on 08/23/2010

That is how the testing is done. It is a series of questions, like putting a puzzle together. Since you have been the only long term witness, the diagnosis is based off of your experiences and observations of your child. I was told my son had everything in the book, which was based from a doctors point of view (minutes...at best). When MY experiences with him were taken into consideration he was finally diagnosed correctly with PDD NOS. I believe this is far more comprehensive, because it takes into account the experiences of the true experts on our children...US :-)!

Patricia - posted on 08/23/2010

It sounds like your Brother was not ADD or ADHD. Ritalin will act differently in "normal" . It is basically speed.. So, for hyperactive kids, it makes them slow down. In the rest of the population, it will make them
goofy...or otherwise. I took it by mistake and i got sick. Lucky for me. I just got sick.
It has helped my boy. Ask if Concerta will do the trick.
That is what my 21 year old is taking and it is much better. He is ADHD, Asperger, and Developmentally Delayed. The ritalin work wonders for him as a kid. They did not have Concerta on the market when he was a child.
So, he got the Ritalin. The only problem with the Ritalin that he had to take it three times a day. When it wore off ..........he would act hyperactive until he got the next dose.
Maybe you should give it a shot and see how your son reacts to it. It saved me alot!
Pat Robinson

Rosanne - posted on 08/23/2010

hi i have a 5yr old son that hasnt acted like other kids all throught his life and ii have had him to many specialiest etc butto no avail. I have a feeling that he has this but the specialist wont diagnoise him and it starting to get fustraging. The secilist have said that he is Hipo and want to put him on Ritalin but i wont have a bar of it as it poisoned my Brother im lucky to have him.Can any one help me?

Melissa - posted on 08/23/2010

Sadly, aspergers is the new adhd. For a sound diagnosis, the doctor (preferably a specialist with a team) need to not only take a thorough history, including questionnaires, but they also need to administer an in-person test that specifically looks for autistic traits. There are a lot of things that are similar to autism spectrum disorders, including adhd, but they are in fact very different. Jennifer pointed out that some kids diagnosed with aspergers are also diagnosed with adhd, but I would like to stress the idea that many doctors do not believe they can exist at the same time. There are a few subtypes of aspergers, one of which inclues a high energy personality type. So while it is entirely possible that your son has aspergers, I would not leave it to one piece of paper unless you were dead certain anyway and just wanted the official word.

Megan - posted on 08/23/2010

my son has PDD.. its like aspergers but different. i did the same thing. kids with this kind of diagnosis display certain behaviors that most kids dont or they display the same behavior as a normal child but in a very obsessive way.. i thought the same thing as you did but after all the research i have done he really does have it..

Patricia - posted on 08/22/2010

Yes, my son has the same problem. My son did not get diagnosed with Aspergers until the the 8th grade. I knew he had adhd and developmental delays by getting evaluated at two years old from a special needs preschool which he later attended. they were very good with him. I don't know how old he is......however, there has got to be somewhere in your area that knows about evaluations, special needs kids, asperger, etc. Can I ask you where you live? The psychologist that he sees might know of someone in your area that you can see. She is on vacation, however, will be back soon. I can email her and see if she has any suggestions for you. Pat Robinson

Kelly - posted on 08/22/2010

I hope to find the right doc pretty fast. He really doesn't do well with change so finding one quick is essential

Kelly - posted on 08/22/2010

that is a long time to wait for an official diagnosis, I hope to get one a lot sooner than that

Pat - posted on 08/22/2010

My daughter was 18 before we were able to obtain a diagnosis. We found a neuro-pschychologists who worked with us and a very thorough exam obtained this diagnosis.

Patricia - posted on 08/22/2010

Yes, you need a better evaluation than that. I went to a psychologist with my son, who specifically, deals with Asperger's and Autism. I had to bring my son in and she did some testing, and then I went back for the results.
May I suggest you dig a little deeper for a second opinion. There must be doctor's or someone who could point the way to where you can get some honest to goodness testing done. Please check your university's and colleges in your area and your maybe your state's or county's Psychologist's association. They may be able to help.
Please let me know how this works out for you.

Kelly - posted on 08/22/2010

I can't answer this one yet, my son is awaiting his appt. so we will know what his diagnosis is. I really can't say the doctors think it's either Aspergers or Pervasive developmental disorder. I guess w'ell see soon!

Jennifer - posted on 08/22/2010

hello juliana my name is jennifer i have a 2 year old little girl and yes we are going through a lot of doctors with her to see what her finally diagnoise is so far she has been diagnoised with senseory intergration, please go too my wall on facebook and read about it its under jennifer heron, this diagnoised is something new i am just learning about this myself being a parent i hope i helped!!

Erica - posted on 08/22/2010

Autism/Aspergers hit us twice with my seven year old and six year old.. But it took forever..

My seven year old would scream horribly as a child when things changed, when he was around a lot of people, lots of noise, etc. He wasn't interested in talking, but he loved Wiggles. He never played with other children, couldn't stand the texture of bread, all drawers had to be shut (even if your hand was still in there), table tops had to be clear, and all toys had to be on the floor. As he gold older he started attacking the backs of people's heads, throwing, hitting, and biting. I went to the head pediatrician bawling and finally someone in his practice agreed that something was up... But it got worse, while fighting for another year to find out what was up he refused to be potty trained, then once they medicated him for that (Imiprimin) his other quirks went away for the most part, everything I had always accepted about my son was mellowing out. To be replaced by a child who peed on his carpet, even though he knew where to go, became a whiz on the computer, but was easily bullied by kids. He loved certain toys and would do anything to save his toys when kids threatened him with keeping his toys.

My daughter was born with water on the brain but we didn't catch it until she was almost a year, again the head pediatrician is the one who caught it (yeah he is the only person I see there anymore). But by the time we caught it, it was going away....

Fast forward a few years, they were in the public school system for preschool under a developmental delay disorder umbrella. During the testing for that program, with the assistance of all of their teachers, and looking around the medical community I found doctor's who weren' ready to label everyone Autistic or who refused to label anyone but the worst cases Autistic. We have found that both of my kids are Aspergers, but not your typical Aspergers. So far they don't spew facts, but they love cuddles to give you two examples. Oh, and my daughter no longer sleeps. We have her on low blood pressure medicine to help her sleep (side affect of the medicine when you have regular blood pressure). Last year she woke up in the middle of the night, tried to climb into her sisters bunk bed and broke her collar bone. The Aspergers diagnosis for Davan didn't surprise me, but I was shocked by my daughter. I mean if you ever met her...

I still torture myself wondering why we didn't catch it sooner, would their life be any different if I had, what if the doctors were wrong and it's something else... The diagnosis doesn't do anything different for them except helps them get their meds a bit easier. Like I said my daughter needs meds to sleep (she's not hyper), and my son needs medicine to manage anxiety (such as the lunchroom noise, his temperment). The school treats them the same as they always did thankfully. We have our yearly IEP's, the teachers adore my kids (especially my daughter *L*), and well life goes on...

Carol - posted on 08/22/2010

My 12 year old son was diagnosed in first grade after having "meltdowns" in Kindergarten , which he never had at home. I didn't want to wait to have the school do an IQ test on him, so I went the medical route as he has an additional congenital condition, Panhypopituitarism. We saw a Psychologist for the IQ test and it showed that there was a big difference between his Verbal and Nonverbal abilities. He said that showed that there was "something else going on and that he deserved more testing". We went to a Neurologist next (which took months to get in to see) and he ordered all kinds of testing. One of those was done by a Neuro-Psychologist, and that was the person who diagnosed my son with the Asperger's. Once I read about it, I knew he had it. It's kind of obvious, I think. However, there are traits he does not exhibit. He makes eye contact for the most part. He is very affectionate. He adapts to change easily. Other than that, he is pretty much a classic case. But every kid with AS is different and unique. And fantastically wonderful!!!

Dixie - posted on 08/22/2010

I had the opposite experience. When I suspected my son might have Aspergers, I began with my pediatrician. He asked my son what was his full name. When my son answered correctly without hesitation, his doctor told me, "No, he doesn't have Aspergers." I looked at the doctor like he was crazy so he sighed then asked my son what school he went to. Again when my son answered, the doctor told me he did NOT have Aspergers. Needless to say we have a new pediatrician. We then went to a child Psychologist that specialized in Autism disorders who spent time with my son. He diagnosed him with Aspergers. I'm told that a Neurologist would be the best route to get an accurate diagnosis of Aspergers, but cost prevents me from taking that route.

Stephanie - posted on 08/21/2010

We were informed of a research project at our state university regarding speech delayed children and children with Autism. We enrolled and our 2 yr old son was tested for a total of 7 hours over 2 days. When we first decided to inquire further as to our son's speech delay, we found that most psychiatrists or doctors had you complete forms and would spend maybe 1 hour testing. I would inquire at your state universities to find out if they are doing any research projects in the area of developmental delays. He had an auditory test, eye exam, interviewed by a Speech & Language therapist, Psychiatrist, and an Early Childhood specialist/educator. After we received a binder full of information and resources to address his needs as soon as possible. We have been very blessed to say the least!

Jennifer - posted on 08/19/2010

I've read that it is very common for Aspergers to look like ADHD... many AS kids do HAVE ADHD but it is truly secondary to the Autism. We have Kaiser insurance and they have an Austism Center that did the testing. We also took our son to a private therapist and the testing took 6 hours... much more involved than the parental forms. Trust YOUR instincts. Learn as much as you can about Autism.. the more I read the more I saw Autism in my son. It was very comforting to know we were on the right track. Get some help for your son... but make sure you take care of YOU! Being a parent of a special needs child is tough! Surround yourself with positive people who are interested in helping you on this new journey!

Julie - posted on 08/19/2010

The way I got my daughter diagnosed was throught a Neuropsychiatric exam that was 7 hours long. It's well worth it because there are a lot of tests involved and this doctor even had others come in to talk to me and my daughter.

Yvette - posted on 08/18/2010

My son was diagnosed with a cluttering disorder which is like stuttering, in that her has a hard time getting his words out to form a cognitive sentence. He was sent to speech and his therapist worked closely with my son. At an IEP he suggested that my son might have AS. I took him to a reg MD, then a psychiatrist. No luck with either. I ended up taking him to a psychologist and did the questionaire. He was diagnosed... The good thing is it gives a you a tool to be more proactive in maknig sure your child gets his needs met in the educational system. Now you can take this information to the school and have them do and inidividual educational plan for your child and the school will have to be accountable in following that plan. I meet with my son's teachers over the last 2 years and even email each other on his progress. His school and I are very connected. This helps to make sure my child does not fall inbetween the cracks of the edcucational system. Knowledge is power... Read up and edcuate yourself. For me, I read about the symptoms and how they related to my son, there was no doubt. I did not question. He was classic textbook AS except that my son is very affactionate and does not dislike being hugged. BUt if us see the similarities, it is likely that he has AS. Here are some movies to watch about ppl with AS, "Temple Grandin" ,"Adam" and "Max and Mary" All great movies about ppl with AS!! Good luck!!