how did you get the diagnosis?

Juliana - posted on 08/18/2010 ( 81 moms have responded )

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My son is 7 and was previously diagnosed with severe ADHD. I have spent alot of time in the school talking to the counselors and taking him to individual therapy. This past school year his classroom "helper" asked me if I thought about having him tested for Asperger's. I talked to his therapist and scheduled it.
Here's my problem. To diagnose him, they gave me a questionaire to fill out. The Dr. called me a few days later and told me that he has Aspergers. That was IT!! I think that he probably has it but I expected more testing to confirm it. What if my point of view is wrong and he doesnt have it? Is this how everyone gets diagnosed? Please help or explain.

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Dixie - posted on 08/22/2010

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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.

Karen - posted on 09/02/2010

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Did you go to a regular pediatrician or a DAN doctor? DAN docs are important--it takes a long time to get in to see a good one, but it's worth it. I would recommend more evaluations from a therapist (speech or behavioral) Lots of mom's do metabolic testing as well to determine if there is an amino acid missing that he can't absorb properly. Fish oils can work well too. I have lots more info if you want karen.mccabe@hotmail.com

Alison - posted on 09/01/2010

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It has been soooo helpful reading all these responses! Thank you for posting this question! My son is 10 1/2, was diagnosed with extreme ADHD when he was 5 (yes it was early but it was really apparent that something was going on with him and he was struggling in preschool). I took him to several peds, therapists and neurologists just to get to ADHD. He started K and was having complete meltdowns in the classroom and we were working so hard to help him feel comfortable and adjusted- when the K teacher called him malicious and violent we transferred to a new school. Things were better there as they were more prepared for kids with special needs and school became a positive experience for my son. We struggled with meds, delays and surges of progress followed by regression (both physical and academic). All the while both the teachers and I (was a single mom) felt strongly that ADHD was not the only piece of the puzzle. I kept asking and asking for more support and testing medically but was assured over and over that he just had ADHD and we were all over reacting- there is no way he could need that much support- In his 3rd grade IEP status meeting the school informed me that during an audit of their files it had been determined that way too much time was being spent with Luke given his ADHD placement and that I needed to push hard to get more answers because they couldn't just abandon their support for him but would be forced too if we didn't get answers. I was placed on a waiting list through our local Children's Hospital testing center and spent the next 6 months asking how much longer to no avail; finally a friend of my new husband and I was able to locate the name and phone number of their former therapist who specialized in ASD (I had done tons and tons of research and reading and felt that Aspergers sounded a lot like my son). In this time my son had become extremely anxious, violent and angry all the time- he would blow up and attack you for asking if he brushed his teeth and other such things. I had wounds up and down both arms and legs from him attacking me. We called and made an appointment with this new therapist, in the initial visit which lasted aprox an hour the doctor reviewed his IEP (quickly) and asked my ex and I a million questions, he also observed my son and asked him a few questions. Then he announced that it seemed apparent that my son fell within the ASD umbrella, explained what that was and that it was becoming rare to receive anything more specific because these kids vary so much and can change quickly, asked if we had questions and recommended a treatment plan including working closely with another therapist (psychologist, psychiatrist combo). He concluded the appointment by apologizing that we had had to work so hard to reach this point. It was sad for me to walk away feeling relieved. We had been through umpteen doctors and therapists, meds and treatment plans that did nothing or seemed to make things harder for my son. I felt like I finally had a positive support system to help him; he had been so anxious and angry. At that appointment he was diagnosed with ADHD, ASD and ODD. We are currently medicating for ADHD and anxiety but hope to start working our way off those in the future- personally I believe he could be ready to start stepping down (slowly) from the ADHD meds. In the last year he has improved from spending almost no time in the traditional classroom (cafeteria or recess) due to academics(being 2 full grade levels behind in all areas), noise and stress to being almost fully integrated and happy to be there. He is still working to catch up with the other kids his age, but he is less than 1 grade level behind now and only in certain areas- in most he is working at grade level. I am sooooo proud of him!

My current issue is that the school is unable to accept the doctors work-up as an official diagnoses so they can update his IEP. We've asked the docs about the testing and they have assured us they did everything by the books- coming here has helped me understand what test names and specifics I can ask for. I firmly believe we have found the right path for my son but need to backtrack and cross my t's and dot my i's now. :o)

Backtracking our story just a bit- we also had him tested for Fragile X syndrome, I did not believe that could be an option as there isn't anyone in my family who fits the profile, but it was something you could get a firm "yes" or "no" on. We are also planning to test him in the near future for food allergies and sensitivities (via a new blood test) as I would be open to making simple dietary changes if they could help my son feel better. Our therapist also recommended a relaxation program which includes carrying an ipod or discman with classical music (such as Bach,etc) loaded on it and doing Yoga as part of his bedtime routine. Those have both become some huge favorites of my sons.
Good luck to everyone!

Jessica - posted on 08/31/2010

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NO, we had my son tested by Boston Neuropsycological services. Dr David Wolf came to the school and did an entire day of testingto diagnose him in 5th grade, we also had him reevaluated in 9th grade to see where he was and to acess changes due to the onset of puberty/hormones. My son was previously misdiagnosed with add/adhd and I knew there was more to it. Each time we recieved a 21 page report with 3-4 pages of recomendations for home as well as school that were written right into his IEP at school. It also included results of each test and what may have affected a certain outcome (someone walked through the room and distracted him etc) Don't settle for less than complete testing by someone who is specialized in this area! Good luck and God bless!

Abigayle - posted on 08/27/2010

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Start with going to a new child psychiatrist and works hand in hand with a child psychologist. I have a son and nephew with Autism and two kids with ADHD and two god children with aspergers as well as cluttering other diagnosis that I am helping their mom re-evaluate her children as well. Do not under any circumstances; not even with ADHD take one doctor, one test and then that is it. I soon will have my Abnormal Psychology with a minor in Childhood behavioral disorders and also working on a speicalty in the near future with Autism and the related disorders while trying to form a Parent and Student Advocacy program out here to help try and fight for the rights they are denied and the lack of testing as well as finally putting military schools under federal legislation. I have found that more often than not we agree to quickly and accept with questioning...always get a second opinion.

Here in order is what I would recommend and start at the beginning is my advice. ADHD as I said co-exists in these disorders.

Formal Screening Tools
1 Pervasive Developmental Disorders Screening Tests (I and II). Parents complete three sections covering the three deficit areas common to autism: communication, social interactions and stereotyped movements. Their responses determine if their child should receive further evaluation.

2 The Ages and Stages Questionnaire.
This test focus on communication, motor skills, social skills and problem solving. Parents responses determine if their child should receive further evaluation. This questionnaire can be purchased through: http://www.brookespublishing.com/store/b...

3 The Child Development Inventories
The first is a screening questionnaire for parents that surveys PPD symptoms without regard to age appropriateness. This one I believe is for younger children so you may want to look and see if he has ever had it done.

4 Social Communication Questionnaire.
This is what my son took under what it was called before Autism Screening Questionnaire and has 40 items that are useful in identifying if there may be a PDD disorder This test focuses on social interaction and language development and is appropriate for most age groups. This test should be considered a screening test only; it assists in identifying PDD symptoms, but cannot reliably differentiate an autism diagnosis from other pervasive developmental disorders. The Social Communication Questionnaire can be found at: http://www.testagency.com/viewpage.asp?i...

Since your child is under 8 years old here is the next one i would request. This test focuses on social interaction and language development and is appropriate for most age groups. This test should be considered a screening test only; it assists in identifying PDD symptoms, but cannot reliably differentiate an autism diagnosis from other pervasive developmental disorders. The Social Communication Questionnaire can be found at: http://www.testagency.com/viewpage.asp?i...

Now after most of the screening so far for formal is paperwork that a parent has answered in regards to her chid. They are very important and should be done to as extentsive as you can get away with...I have all of them done. Next you will want to request SPECIALIZED TESTING. That is what your doctor failed to do and I would definately go somewhere else.
They have in Northern CA an Autism and ADHD specialty doctor office and screening center...see if they have one of those in your area. Check with the Exceptional Parent Magazine..they have a book that goes out yearly with all kinds of those centers, doctors etc. throughout the nation. Now mind you my son was said not to be autistic but he didn't know what he had...so it isn't fool proof but at least a good source of information.

he Childhood Autism Rating Scale.(My son had this one done) consists of a list of fifteen questions probing five diagnostic domains relevant to autism spectrum disorders. It will be on how he adapts to change for instance (mine can not transition; we have had to do a visual schedule daily at home and school with verbal reminders constantly...and a STRICT routine..I mean down to the ever loving minutes BUT now he just needs a verbal cue and a moderate routine.) This test will include viewing reports as well. Address's behavior. My son's best friend is Autistic and high functioning and extremely quiet and passive to an overstatement while mine is loud, rude, and used to throw violent tantrums...so they will want to see if he might fit in the behavior. Now an interesting thing to note for you with ADHD. My son's school at first demanded I get him put on medication and I was adamant on keeping him off but agreed to let them screen him for ADHD but it had to be a doctor on post that worked through EFMP. She did the survey and so did I and as I said he fell in the range of ADHD...important to note though she adamantly refused to medicate him due to the violent tantrums. THAT is not common for a doctor to pay attention to so even though he tests ADHD he will not ever be diagnosed with it. The score will be compared against the data of the norm...

I also had the Briggance Test done but I am unsure if your son still falls in the age range I believe he is older that the test is for. If you want ask about that one to it goes through 12 month increments of your childs development a good tool for not missing anything.

Now this next one I would not let them diagnose without...excellent when evaluating my son. I am going to just cut and paste it from my own notes I took it verbatim anyway...so you get the full knowledge you need.
Wechsler Preschool and Primary Scale of Intelligence. The Wechsler Preschool and Primary Scale of Intelligence, abbreviated as WPPSI, is one of the oldest intelligence tests designed specifically to measure the cognitive abilities of preschoolers. The test yields Intelligence Quotient (IQ) scores, as well as subtest scores yielding additional domain-specific information. It is a revision of the original Wechlsler Scale of Intelligence, created in the late 1960's to measure IQ for children between four and seven years of age. The modern WPPSI, now in its third edition) is appropriate for children between the ages of two and six. Only a specially trained child psychologist or psychometrician can administer the WPPSI.
~This was done through the school district. At his IEP meeting you request it IN WRITING and if they do not do it then you get out the handbook they give you and follow the process to appeal their decesion until you get them to do it...I think most schools will def do this test but my son's school won't let parents here request some of these. The reason I feel personally its so important is its measureing cognitive functioning (thinking). This is where we find out if our children are at age level maturity or not...mine is two years behind.

That should give your doctor plenty to diagnosis your child initially. If you want to email me or further get info on here so other parents can see...there is much more as a constant process to get what they need done. Once they determine what it is...and you have an IEP drawn up...I will be glad to help you in the next phase. This is the most importatn though. My son being diagnosed Autistic gave him the cat A: Autism and related disorder qualifier for special eduation full day services and speech and occupational therapy; a para professional has to be assigned if they need it because they have to have the general education enviornment rights...and normally begin with attending specials, field trips and stuff with GE class and working one on one in the self contained classroom one one one with teachers and very few students. It will depend on the need of your child's behviors and academicx.

Any questions with treatments, therapies, school responsiblity to provide; and even affiliated problems like sensory for instance....my email is abbykorinnelee@aol.com

I would be happy to assist with your question or concerns on the IEP as well. If I don't know the answer I will find it out for you. I think its great you questioned that doctor...please let me know how it turns out.

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Tanya - posted on 09/06/2011

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My son was screened by his Dr. using the CHAT screen. When he was shown to be at risk, we got a referral to a Pediatric Development Specialist. Her asst. did an indept screen, observation and interview. Alot of documentation was involved w/ his OT, SLP and teachers that culminated in telling his Dr. my concerns. When my son failed the initial screening w/ the Asst. then an appt. was made w/ the PDS Dr. She observed him, did an overall check, read thru the documentation I had provided, we did a through medical history, she performed a physical check and ordered some blood work (to test for Fragile X) and interviewed us at great length. She put all her observations and diagnosis in a report and gave us a bunch of literature to read, numbers for support groups, and told us to get him out of his current school and in to a priority preschool to get help pronto. It was a long and very involved process. We now meet w/ her twice a year. If you don't feel right about how your child was diagnosed, I would pursue it. IDK about other states, but in ours I was told that my son would not get the full range of help offered to Autistic children in his school system w/o an official diagnosis and an IEP w/ that diagnosis on it. Since it was first suggested to me that my son was possibly Autistic, it took approx. 7 months to get the diagnosis. Good luck!

Brittany - posted on 09/05/2011

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There are a lot more factors they take into play here. There is a lot of behind the scenes work. Since your son is 7 he has been in school for some time now. School records of any behavioral issue will be taken into account. Also all the doctors visits for ADHD testing will be looked at. His therapy records will be taken into account.

The ADHD test is very intense. They are not just monitoring his intelligence but, his actions to things. This is why ADHD testing in not available to young children. All the doctor had to do, really, is read your answers, look at his past and make a diagnosis.

If you believe the doctor is wrong get a second opinion. Seriously. They call it PRACTICING medicine for a reason. This is your child. By getting a second opinion your doctor should not get offended. He should understand your concern that this is very serious and you want to make sure your child is getting the proper care he needs. Every child deserves to be successful.

If you doctor get his panties in a tangle then this not the doctor for you.

I am not a Nurse, yet, but, will be soon. Get a second opinion.

Linda - posted on 08/30/2011

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We went through our school system when my son was 4. He had extensive testing with an occupational therapist, speech therapist and physical therapist. Additionally, he also was examined by a physician who talked to me (he was a jerk!). We had to fill out at least 3 different questionnaires. It was very, very involved. Unfortunately, there are no concrete diagnostic tests for anything in the spectrum and no labs. You do need to eliminate other things - like weird genetic syndromes (not likely), thyroid disease, anemia, elevated lead levels, etc... Was the doctor a pediatrician? I would go see a pediatric neurologist.

Linda - posted on 09/08/2010

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We had about 6 hours of testing done through the county schools. Every time we went, I had someone give me a different autism questionnaire. Then I had one stupid doctor tell me the future looked bleak for my child because he was unable to communicate his needs (which is not true) This was after I mentioned to him that I am a physician assistant in family practice. You definitely need more testing.

Jennifer - posted on 09/02/2010

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With michael it was almost the same he is 6 and they had me fill out questioniere and his teacher too and turn it into them and then they took him in a room and did some tests on him for about an hour then they had him do a group class for 30 min two days later while being observed and then they meet back with us that following monday to tell us that he had aspergers and adhd

Annette - posted on 09/02/2010

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Autism is a big waiting game! In South Carolina (GSP area) receiving services and getting the diagnosis is a horribly frustrating wait.

Heather - posted on 09/01/2010

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It is so difficult to find the answers and the right diagnosis for special kids. An evaluation by a neurologist and a psychiatrist is the way to go. ADHD seems to be the jump to diagnosis, but any psychiatric handbook will say ADHD is the last choice of a diagnosis after everything else is ruled out. When I had my children evaluated by a neurologist it included an EEG which discovered my daughter had a partial seizure disorder that we were unaware of! But that explained a lot of her issues. It's not easy. You have to educate yourself and explore all your options.

Jean - posted on 09/01/2010

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That is not right! My son gets an evaluation every year by a developmental pediatrician. His first one took an hour and his 2nd took 2 hours! These evaluations should be very thorough. Both times he was diagnosed with Autism. He should have his 3rd very soon. The school system has paid for ours so it was easy for me. Now that he isn't in Infants and Toddlers I am not sure how it works.

So it should be a thorough, well done eval by a physician, that also does include your thoughts, I would prefer an interview rather than a simple questionnaire! Trust your gut mama! If this doesn't seem right, which I can tell you don't, then do not accept it and move on. He may have Asperger's, but things need to be done the right way!

Julie - posted on 09/01/2010

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never heard of that sounds like doc was too busy didn't want to take the time never got a diag. w/o testing; both my kisd were seen @ Univ. of Iowa for several hours

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Most Professionals don't have enough history to base a solid diagnosis on. Autism and Aspergers is best figured out by seeing where the child lies on that scale. Feedback from the parent is 100% essential during this process, for w/o it, the Professional is in the dark. There are some children who are obvious &, it's easy to see that they have Autism or Aspergers. Other children are required to go through a long, arduous testing process (usually required via Insurance &, unenlightened/uninformed Professionals). Best of luck in getting the kind of care your child needs.

Leticia - posted on 08/31/2010

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My son was diagnosed with PDD-NOS at 8 he is now 10. I have Kaiser insurance and we were refferred to Autism center out of town, The test took about 5-6 hours long. Alot of paperwork and the doctors talking to you and meeting with your child doing some cognitive, visual test and more. I had to push his pediatrician and phsyciatrist to get it done. My son is also receiving services through County mental health through his IEP from school, and I was also encourage to apply for Regional Services in our area and he did qualify they also do some testing and can refferr out and somtimes help with costs. Go online start looking in your area for services. It is very frustrating my son is now 10 and we are struggling still have not found the right medication to help him and I am currently doing research on Hollistic approaches for his disailities. My son's diagnosis are PDD-NOS, ADHS, OCD. SID and Tourrettes, School gave him the diagnosis of Emotionally disturbed. Good luck and you are not alone.

Lisa - posted on 08/31/2010

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Hi Juliana, my son was diagnosed at 6 yrs old with Sensory Integration Disorder which is on the Austism spectrum, just keep in mind like many things in life, Austism comes in many shapes and forms it is a huge sliding scale, I still today and my son is 10 ask the professionals that we see do they feel that his diagnisis is correct, he also has ADD, I keep in close contact with his school and educate myself. Don't feel sad about his diagnosis if indeed he does have Aspergers now you know what you are dealing with and can get him the help and support that he needs. My advice to you would be to have a second and third opinion, ask any of the counsellors and therapists that currently are involved with your son if they agree with this diagnosis. He will be fine, with the right interventions and a loving mum like yourself folllow your gut a mothers instinct is the most powerful tool we have, I wish you and your son all the best!!!

Amanda - posted on 08/31/2010

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There are a handful of questionaires that a doctor can use. Aside from those and observations, there are no panels or tests that confirm an Autism or Aspergers diagnosis.
The Autism Book, by Dr. Robert Sears (2010) is very thorough and extremely helpful about what panels and tests you can ask your doctor for (genetics panel, testing the digestive system, etc). Depending on the test/panel, the results can provide guidance in how to treat your child's condition (gluten/casien free diets, hormone treatments, etc).
It may seem like a rushed diagnosis. An autism/aspergers diagnosis has a whole slew of advantages, including access to funding for services and support. Early therapy is crutial. Use the diagnosis to your son's advantage.

I couldn't function for a long while after my son was diagnosed. He was 18mos old. We were concerned about his babbling and stimming - made an appointment with a speech pathologist. She recommended us to a nuerologist. I remember how much I hated that woman after she told me Sam had autism. He was so young - how could she know that? The only way I could prove her wrong was to get Sam into therapy. As he got older, more and more signs, behaviors surfaced. It's been hard, but I can't imagine where he would be today if we hadn't started therapy as early as we did. While it's still pretty early (he's almost three now), I know this diagnosis probably saved my son future.

Jodie - posted on 08/30/2010

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I have a soon who is 81/2. I say educate yourself and trust your judgement. Get second, third, fourth opinions. Our ped. listen intently what was going on and said I think this is what it is.(He is a teaching professor). He then referred us to a specialist. It took us almost a year to get in. Then we meet with the neurologist who referred us to a physcritist(sp). Which took us another 9 months. We got very generic diagnoses and she suggested we get tested in another 2 years. (Seriously) In the meantime we are meeting with the nurse practioner (who neither my child nor myself could stand) My child got and IEP in kindergarden and they are all asking me? Is the aspergers/autism. The neurolagist referred us to another neurologist because what they were doing wasn't working. He walked in looked at my son, never looked at any test or talked to me and my son and said,' He's MR. That didn't make sense. We then were referred to other people/agencies. Six years later and many headaches later we are going to another specialist and thinking about moving to more "Asperger friendly areas". I have finally found two agencies that support us, no matter what his diagnoses is. I'm constantly online, reading or changing things that work best. My husband and I find trust our judgement works best.

Maryann - posted on 08/30/2010

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Hi Juliana,
We went through a similar time trying to solve the "mystery"... my son was not diagnosed with Asperger's officially until 9th grade, but once he was, his school experience improved dramatically! There are things the school will do for Aspergers that they will not do for ADHD, and it made all the difference in the world. My son is 19 now and we are on to trying to get modifications from the college -- which is a whole 'nother adventure.

What I have found over the years, is that the only thing a diagnosis of any kind does for you, is to get other people to try harder to understand how to best serve your child's needs. We were fortunate to be in a good school district, and I would say that overall, my son's education in the Special Education department was of higher quality than "mainstream" kids, because he got more one-on-one attention, and they didn't try to stuff him into a one-size-fits-all box.

The schools are getting better and better at recognizing the differences children have in their learning styles, and at serving individual needs, but with an Asperger's diagnosis, my son finally started to feel like he was understood.

When my son was finally diagnosed, it was from a fairly comprehensive battery of tests that the school ran. In the process, they also discovered (at 9th grade!) that he was dyslexic (which is a spectrum disorder too, and I was quite surprised!) and dysgraphic (which I had always suspected).

We also had a therapist who suspected he had Asperger's since 3rd grade, but he was always one checkmark short of an official diagnosis. So we spent 6 years wondering. Yet the special ed director at the school was willing to give us a few of the modifications they give asperger's kids, and again -- it made all the difference in the world for his success at school.

Bottom line of my rambling... I would not worry too much about the specific diagnosis. I would worry about his experience at school, and push the school to do everything they can to make accommodations for his needs. The more successes he has at school, rather than feeling like a failure, the higher his confidence and self-esteem will be, and that is by far the most important thing for him. The academics will be there. He will learn. But if you can get the school to help him feel successful, then he will conquer the world in his own way, and in his own time.

BEST of Luck!!!
-Maryann

Michelle - posted on 08/29/2010

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I have two children with Aspergers both of my children were diagnosed by two different doctors in two different states. In both cases their pediatrician referred us to a diagnostic (testing) psychiatry team. They did a ton of tests and played with them by themselves and in a group setting. There was a ton of questionnaires for me. Afterward they gave me the results and suggestions on how to help them. Do a ton of research. Read Read Read. Remember they are learning new stuff everyday to help our children.

Mandy - posted on 08/29/2010

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With my son diagnosis was a bit of a mystery to be solved. We had ALL noticed something was not quite normal about Michael. Physically he had a very large head - off for cranial and brain testing to figure out he just had a big head, lol. Then we noticed he did not make good eye contact - well vision problems run in the family so the Ped sent us to the eye doctor - 20/20 vision! Then it seemed like he did not hear right, he would totally ignore when people spoke to him but freak out when a computer was turned on. His hearing and ears were completely normal. Then one day just by chance when he was 4 I took him to my dh's music rehearsal and found myself talking with one of the horn players. She was watching Michael and began asking questiongs like "Does he look you in the eye?" and talking about how similar he seemed to her son - after about 15 minutes she looked at me and said "My son has a form of autism called Asperger's syndrome. Has your son been tested yet?" You could have knocked me over with a feather. Autism was the one thing we had NOT considered because Micheal's speech was normal (or so we thought). After that day it took a few months of fighting to get him an appointment where they gave us that huge questionerre, plus one for his ped and one for his preschool teacher, and then we went through a few hours of observation and testing. In the end it was Aspergers.

Now one could say that a questionerre is not enough - I actually agree, but for Michael it was when you put it with all the other tests he had over the years. We had already ruled out brain problems, hearing issues, vision issues, etc. Behavioral analysis was just the next logical step. I would be leary of a diagnosis if there is NO other testing involved, but definately follow your gut, do the reading. I know with my son once I sat down and read the material I could see my boy so clearly. He is not exactly textbook - he loves to be hugged and is very caring and affectionate - but he is pretty close. I have no doubts now.

Denise - posted on 08/29/2010

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My daughter had problems since 1st grade, she was placed in a self contained classroom. The experts could not put thier fingers on what the problem was. When she entered middle school was re-evaluated and tested. After completing a day of tests, the doctor was able to tell us that she had. It was frustrating because she was diagnosed late.

Nancy - posted on 08/29/2010

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Our Dr. was aware of something at birth was not right. it wasn't until we went into school, especially 1st gr that w had to put a specificname to it to get the right help. Chris had low motor skills and speech problemsso we had physical and speech theripist come to the house since the age of three.Chris is now 13, in junior high, progressing nicely with the help of special ed teachers and family that help him to understand his behavior and why he doesn't get things as quickly as other kids

Barbara - posted on 08/28/2010

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Our son, now 33, was not diagnosed with autism until he was 13. There were 3 days of medical testing to try and discover what was going on. Those tests included an EKG, a CAT scan, time with a speech therapist, time with a development specialist, etc. The head of neurology was the lead doctor for all of these tests ordered by our pediatrician. Our son was five at the time, did not speak. would not look you in the eye, did not play with appropriate toys, had meltdowns, could barely stand to be touched, loved some loud noises and hated others, etc. At the end of three days the lead doctor who was a neurologist, came in and told me; "I am going to tell you how much we don't know. Your son is perfect! To put it in layman terms, somewhere in his brain there is a wire or wire's crossed. We don't know where and we cannot fix it." They dubbed him PDD.
At 13, a psychiatrist examined him and came back with severe autism. Because so little was known at that time, he gave me a little book that told what they knew then. It described our son to a "T".
At 19 he was to undergo a whole battery of tests again to help research scientists discover more about autism. Some of what they believed at the time was to be debunked by our sons tests. The medical tests all came back perfect - that is to say, no brain damage, no organs too small including the brain, hearing acute, all the organs to do with speech normal, and brain waves, including sleep deprived brain waves - normal. Amazing.
Through all of the years I have journeyed with our son I have one thing to say and I shout it from the rooftops. Do not give your child drugs. There are a myriad of other answers there and the drugs make his situation worse and eliminate the body's ability to reverse any or all of the autism.

Anne - posted on 08/28/2010

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they are supposed to have the parent fill out a questionaire as well as, the school teachers, and a psychiatrist exam him to get a truthful diagnosis, that is what I did with my son, he's now 18 - and very high functioning, some will outgrown some of their 'issues' as they get older

Madeline - posted on 08/28/2010

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Both my sons were evaluated at a reputable county facility - it took three months to evaluate each of them - they visited the facility once a week for a couple of hours during that time - we waited a month for the full 30 page report which gave a detailed breakdown of their abilities and deficits. Both evaluators were present for the long meeting where we discussed the diagnoses fully and they made recommendations. Hope that helps.

Teal - posted on 08/28/2010

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My son was diagnosed by a Pediatric Neuro Psychologist, two days of intense testing and questionnares filled out by both the parents and the teacher. Please do more research on this

Nicola - posted on 08/28/2010

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My son was 5 last January and was diagnosed with Atypical Autism in Feb 09. His speech did not develop and he was completely silent until he was just over 3 so this sparked a concern. He underwent various tests and observation which concluded with a 3 hour assessment in which he was diagnosed. As he has Atypical Autism he always seems to fit in some boxes and not in others so getting help can be hard. When he was diagnosed I questioned how the could tell this as his speech and understanding was so delayed it was hard to tell what he did and didn't know. Now I see the 'label' as a good thing for him as it means people are more understanding of his silences and are not offended when he often ignores them. If the diagnoses is wrong I think you still have to see that at the end of the day your son is still the same person and you love him for being him.

Carol - posted on 08/27/2010

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My grandson was diagnosed at a very young age (2 yrs). His mom got the original diagnosis which was Aspergers. This was done by a pediatrician and she turned out to be a little off in her diagnosis. He is higher functioning than Aspergers. We found this out a few months after this diagnosis when he started seeing a psychologist who diagnosed him with PDD. When he was in school they fought me about the diagnosis saying they didn't believe he was autistic at all. I had to have him re-diagnosed by a doctor of their choosing. I was also given questionnaires to fill out. His teacher and daycare provider also had to fill them out so the doctor could see not only how he behaved in different settings but had a comparison through several sets of eyes. She explained this was because of exactly what you fear, parents can have a very different perspective. She confirmed the psychologists diagnosis. The original doctor who diagnosed the PDD just asked the questions in his office, if I remember correctly. My grandson is now 10 so that was a while ago lol.

Lisa-Jayne - posted on 08/27/2010

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How funny, my daughter with Asperger's is Juliana, same as you. What a beautiful name. I must say our diagnosis was a lot more involved than yours sounds. Juliana spent a lot of time being monitored by her paediatrician and also being monitored by me, after being told what to look for etc. My Jules also has an intellectual impairment and had Epilepsy. Really, what I would say to you is, the diagnosis is what you need to explain your child to other people. You only need to know what your child needs and how best to help him. All the very best, and feel free to contact me if you want to.

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Here in Australia you have to get the diagnosis confirmed by a paediatrician, clinical psych and speech pathologist. My son has High Functioning Autism and ADHD- The process took about 3 mths. All 3 specialists have to agree. Interestingly the clinical psych was more going towards ADHD, whereas the other 2 said he was testing high for autism. This is where a multi-disciplinary approach can be vital to obtain correct diagnosis.

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I had a similar situation with my son being diagnosed with ADHD... a tick the box list and that was it ! turns out he has Aspergeras spectrum IV Autism & ASD. I had pushed the school to get my son into a pshycologist for 3yrs until I removed him entirely from the school and they had to do something about it... I got my diagnosis through a 30min appointment with a psychiatrist in the end and demanded 2 other opinions which all came back with the same result.

children with Autism have definite traits and they can't be missed however you should atleast see a doctor and get a few opinions before you settle for your own piece of mind.

Tammy - posted on 08/27/2010

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I am not sure where you live but look for a Regional center near you and tell them that you supect your child may have a form of Autism and they should move you right along. You can also look and see if you have one of these places called Rowell Family Empowerment companys in your city or town they can can help with your sons IEP and also help you get the medical dignoses you need if you need anymore information I will be glad to help contact me at my regular email tammykelly1975@yahoo.com I will do all I can to help you.

[deleted account]

This does not sound right, did your son get seen separately from his regular therapy appointment? My daughter went through several different "tests" and a questionnaire was given to teachers as well as my daughter to fill out. We went through a few weeks of appointments where they would work on different tests and then the Dr. compiled a report that we discussed in person.
Hope this helps.

Julie - posted on 08/27/2010

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my 8 yr old hunter has aspergers and does take meds to sleep at night.hes been taking it for3 1/2 years now.first they had him on clonidine and now its intuniv.he also wasnt sleeping at all id be up all night and still trying to kepp up with everything else.i didnt know that was part of his aspergers no one has even told me about having the same thing till you.thank you for sharing

Nancy - posted on 08/27/2010

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It is best to have a full neuropsychological exam with an autism specialist. It can involve 3 to 12 hours of testing. The child needs to be seen in person and other possibilities need to be ruled out.

Tammy - posted on 08/27/2010

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hi, my son is 15 and up until a year and a half ago he had been diagnosed with sever ADHD as well. His home room teacher mentioned that he (age 12 then) reminded her of another one of her students that had Aspergers. I talked with his then social worker, the school principal and asked for a referral to a qualified doctor. We met with 2 psycologists at school and I completed a questionnaire. Based on that, the interview and my son's past behaviour and current behaviour we were then referred for further testing. The testing was an all day interview session where they interviewed me about my son's behaviour between the ages of 2 to 6, his behaviour at that time and they met with him for 2 sessions to interact and 1 session where they observed him with another doctor. At the end of it all we were told he did indeed have Aspergers.

Kimberly - posted on 08/27/2010

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Juliana, bless your heart! I know how you feel, my 8 yr. old has severe ADHD, Bi-polar, & ODD. My youngest 6 yrs. is Autistic. From what I know, that form is part of what they use to diagnose. I did those too, so did teachers for me. You hang in there, your doing what's right!

Abigayle - posted on 08/27/2010

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I wanted to note...medication is the first thing a school screams...my son is not on medication and hasn't been. I had to bearhug and rock him for six hours and have many scars but he is learning to function and deal with and acknowledge his disorders. I grew up with ADHD never medicated and did the same thing. The only reason as an adult I am medicated for Anxiety disorder, ADD and OCD is to be fully patient, non-emotional, we don't spank (that is actually one of the worst things to use as discipline for an Autistic child) and I had to learn patience. My child taught me a lot as well by staying off meds. Now if you try all you can and have to utilize medication...that is one of the areas I have good resources for information and a reliable educational background to make sure they don't overmedciate, undermedicate, give him the wrong meds ....autism is slightly different and I am sorry to say we have run into more problems with medication here then anything. One example; a child homeschooled until Kindergarten, been in his class less than a month diagnosed ADHD and given ritalin at five years old. Ritalin in my experience is last resort, amphetimes can cause serious manic and psychosis problems later the longer they are on it and not to mention Ritalin in a five year old is very dangerous. So heed on the side of caution and don't be afraid to keep him off the meds. Find a really reliable and trustworthy doctor...you know you do when they use meds as the last resort not the first option....sorry I had to comment. When my son ws first diagnosed they didn't want to give any meds to these kids...and I found I have come to agree with them even though to be honest I would have loved to have them for those six hour bear hug days

Debbie - posted on 08/27/2010

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My daughter (age 12) was diagnosed with ADHD and then Aspergers. We did answer alot of questions with an intake person and then with the psychiatrist. The diagnosis came as a shock to me as she also has bi-polar. Keep a log of the moods and sleep patterns. The doctor prescribing should certainly see them in person. They look for little "ticks" that you may be unaware of. Next year Aspergers will be under the umbrella of Autism. You can seek additional help at school etc by using that diagnosis. Good luck!!

Sherrie - posted on 08/26/2010

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Well it took me 9 different doctors until we had the correct diagnosis (perseverance). I was interviewed by the therapist for about 45 minutes w/my son present, then my son was evaluated using different testing (oral,visual, etc). His eval lasted approx 3 hrs.

Marie - posted on 08/26/2010

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I know i'm one too We are truely blessed I would noy change one moment with my son and all he has taught me for anything in the world

Kischa - posted on 08/26/2010

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Thank you so much, its hard being a single mom, but even harder being a single mom with a son with autism....

Kischa - posted on 08/26/2010

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about four weeks after my son got the MMR shot, he began to change, I went to several doctors in baltimore, telling them that something wasn't right about my son. I have never heard of autism at all at this time. Doctor after Doctor told me, the things he was experiencing was because he was born premature. I knew in my heart that something else was wrong, it took to move to another state NC, for one doctor, just looking at my son and listening to my concerns, to tell me my son had autism. I started asking when he was 1, I found out when he was 2 and 8 months old. Some doctor just dismiss us parents, but thank God for that one Dr. that listened.

Marie - posted on 08/26/2010

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do research and find a dr. that specializes in Aspergers . that is what I did now i can get him the help he needs. And now my peoblem lies in my childs school they dont accept he has a problem. It is an uphill battle but my child is well worth it Good luck! Be strong

Lesa - posted on 08/26/2010

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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

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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

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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.

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