How do I get him diagnosed?

Jessica - posted on 11/03/2010 ( 48 moms have responded )

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My sweet boy is 11 (emotionally 8) He is bright and talks alot but doesnt have proper emotional response and lord help us if you change his schedule it will break his poor little heart. :-) I know something is wrong but the school psychologist says he is not autistic so who do I take him to? how do I go about finding out what is wrong?

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Jennifer - posted on 11/10/2010

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My 11 yr old son was diagnosed 1 1/2 years ago as a PDD patient, my son is also extremely bright, but emotionally imature. Pervasive Development Disorder is where they diagnose patients who have some characteristics of, but not all, of disorders such as Ausbergers and autism. Schools often resist dealing with students with disabilities, especially when the students school performance and grades are not affected. Having to make special arrangements for a student complicates the routine and sometimes requires additional staff that the schools are resistent to hiring. Having even this diagnosis will force the school systems to work with you on forming a plan that will work for your child, as well. Ask your primary care doctor to refer your child for a neuro-pschological exam. My son has made great strides in the last 9 months, or so, because we seem to have found a good balance on his meds and counseling. Don't give up, keep pushing until someone listens, there is help out there. I was fighting things out with my son's school for 4 1/2 years before we finally got a plan established. You have to be a strong advocate for your child in order to establish what he needs for success. Remember his future is at stake and failure is not an option. Good Luck

Susie - posted on 11/03/2010

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Ask your pediatrician for a referral to a specialist. My daughter is in the process of being assessed. Our doctor just referred us to a neurologist to check her out. I think that mothers know best. If you think theres something going on there probably is. But like Ive been told many times many of the worlds greatest minds have been suspected of having autism. Good luck with everything.

Marianne - posted on 11/12/2010

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I am unsure of your location but here the first step would be to get a referral for a GP to a diagnostic psychologist. They will run through as series of "tick and flick" questions with you and your son. They will then do a series of tests including puzzles, games etc, and possibly the Weschler scale IQ testing.
Your son will be given scores along the way. Most people score some attributes to Autistic disorders but do not necessarily have it. Good Luck

Charity - posted on 11/08/2010

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like the other moms posted, try ur pediatrician first for a referral and see how that goes. and on a side note, if you put in writing that you want ur son evaluated, the school must do it. i just went thru this with my 9 yr old. they can't say for sure what ur child has until he is completely evaluated. if u have any questions that i can help you with, please feel free to email me at chertybaby@yahoo.com . i have been thru so much the last 2 yrs with my sons school, but i have finally got him the services he needs and would more than happily help another family that needs it

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Kayla - posted on 12/06/2010

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Most difinately speak to your pediatrician, they can refer you to a specialist. My son was diagnose by a psychiatrist that specializes in autism and other neurological diseases. If your pediatrician wont help you or refer you, you can call your local cabinet for familys and children and speak to them about what you should do. Believe it or not they can be very helpful but they are always so busy! Good LUck!

Miriam - posted on 12/05/2010

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I think sometimes it depends on where you live. When I lived in Maryland the school district was great and diagnosed my son with asperger syndrome at age 3.5.

In Texas I think if we hadn't arrived with a diagnosis we'd never have gotten one. Now I'm in New Hampshire which is much more like Maryland was. Maryland, though, is great with diagnosing kids at an early age. In New Hampshire they may not even attempt the diagnosis but accept whatever a medical doctor says. I had to get a written diagnosis from a doctor this year to put into his file. They seem to request this every 3 years. In Texas the school districts would fight parents no matter what medical doctors would say. They accepted my son 's diagnosis because they were legally required to accept whatever diagnosis we had at his previous public school. It still took us 5 months to get something that worked reasonably well for my son. Actually, he did end up in what I think must be the best situation anyone can get in Texas for a kid with asperger syndrome. He was transferred from the school in our neighborhood to another school across town. It was their idea because they finally admitted they didn't know how to help my son. So they provided transportation. Even if they hadn't I'd have found a way to get him to this other school because they had people there who could at least deal with his behavior. His behavior improved very dramatically after that. Still, things are better than even what they did now we're in New Hampshire. In TX he didn't get any OT and the year before we moved here he lost his ST. Now he has more OT than ever before and much more ST as well.

Angela - posted on 11/28/2010

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either talk to your pediatrition or contact a licensed psychiatrist and tell them your concerns.i found out that when my oldest started school, the administration cannot tell you anything it is against there protocol. i hope this is helpful.

Sharon - posted on 11/22/2010

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Sounds very much like my grandson who has aspergers, it is often missed diagnosed, Talk to your family doctor about aspergers and they will be able to refer you to a specialist. My grandson wasn't diagnosed until he was 15, it was a long hard battle, not knowing ourselves until we found out about aspergers and mentioned that to the doctor, who himself did not believe but gave my daughter a referal to a specialist. Good luck to you and your son.

Ingrid - posted on 11/22/2010

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You are going to need to get a private diagnosis through a psychologist/psychiatrist (depending on whether or not meds will be involved). My 11 year old son is Asperger's and ADHD. The schools do not like to cooperate as it costs them money to supply him with what he needs. I forced them to supply him with a 504 through his psych because they refused an IEP. Because he tests at a college reading level and is on a special diet rather than medicated, they told me the IEP was impossible. I am very pushy (in a friendly way) at their school and they all know me well. They also now know they need to work with my son with all of his needs. Get your private diagnosis with someone who will fight for you (Melmed Center in AZ) and do not take no for an answer at school. At this point, you are the only voice he has.

Beth - posted on 11/20/2010

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ODD and ADHD are 2 common things children with Asperger's are initially diagnosed with. His teachers never believed my son had ADHD despite the doctor's insistance because they did not have trouble with him focusing. Three years later, lots of crying, beating our heads against the wall and trying every medication known to man for both diagnosis Jake was diagnosed properly. We've had no problems since finding him an appropriate therapist who specializes in children with Asperger's. She has been wonderful in helping him with his social skills and peer interactions. Jake has not had one office referral this year, yet. By this time last year he had been suspended once. It's amazing the difference in him since getting the proper diagnosis and not taking meds that weren't working anyway! Keep fighting...you know your son better than anyone

Heidi - posted on 11/20/2010

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I took my son to a concilor first he helped us figure out some things about our son that was very shocking for me. I always thought me son was carefree and happy, he was so sweet like you say of your son. The concilor suggested Aspergers and sent us to a psychologist that gave him the diagnosis. I, sad to say don't put much trust in the school psychologist. At 3 years old my son was diagnosed with ODD I knew there had to be something more to it.

Beth - posted on 11/20/2010

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Find a good children's behavioral or pediatric clinic that specializes in children's health and behavioral disorders. We were finally able to take our son to AI Du Pont in Delaware who did a wonderful and exhaustive testing on Jake but it was definately worth it.

Leora/shelly - posted on 11/19/2010

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Well, I told my daughter's school BEFORE she started that she hadnt played with many kids her age and that I had been working with her acadimically with Hooked on Phonic. She excells there, but is behind behaviorally. Am in the process of getting her acessed by the Psychyistrist, and behavioral/sensoral drs. It helped that my pastor is also a Psychologist as well. He has helped me with Gabby. Interestingly, I have several great nieces and nephews that are in the austuism spectrum disorder as well. Coquincedence? I think not. Genetics has something to do with it as well. At least in my family.

User - posted on 11/19/2010

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Our son was assessed twice by the school psychologists and both said there was nothing "wrong" - he was just very bright. Got a private referral for giftedness, and psych said she could tell by the time that he had walked from the car to her front door that he had Asperger's. Hard as it was to hear, at least we could finally get on the road to helping him cope. Persevere!

Jennie - posted on 11/18/2010

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My son has adhd and im wondering if it could be something else. I have done some reading on these subjects and there are definitely some similarities in my son. there are different types of autism such as high functioning autism and where the child may be on the autism spectrum. my advise is to read everything you come across and ask the dr.

Susan - posted on 11/18/2010

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Keep pushing your doctor,social services,and school. Could be Aspergers ,keep pushing,try web sites for Autisum, but keep pushing,regards Sue Broadbent

Julie - posted on 11/18/2010

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I have an 11 yr old that was diagnosed at 3 and is now HFA or Asperger's. It is difficult to get a diagnosis later but, can be done. Depending on where you live, you can get a free diagnosis through Regional Center or have your son evaluated by a child psychiatrist. Good luck to you!

Ann - posted on 11/17/2010

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For those of you that have children with asbergers, look at www.meettaylormorris.com. It is very inspiring and gives me hope.

Tara - posted on 11/17/2010

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go to a developmental pediatrician... Talk to your doctor to find one in your area...

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I highly suggest you look into Sensory Processing Disorder. You can have him evaluated by an occupational therapist in your area. I also highly suggest the books "Sensational Kids" and "Out of Sync Child". Another great place to start is the SPD website check out the checklist here to see if this sounds like something helpful for you.
http://www.sensory-processing-disorder.c...
Good luck!

Loren - posted on 11/16/2010

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He may not be autistic, but he may fall into the "Pervasive Developmental Disorder" category. PDD NOS (not otherwise specified). Look for your area "Regional Center" and start there. PDD does not quilify for the services that an individual with Autism would receive, but it will give you information you need to qualify your son for individual services from the education system. (IEP).

Rachel - posted on 11/16/2010

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I'm not saying the ADOS is the only way to get a diagnosis -- just that it's irrefutable so if the OP is having trouble with their school and/or finding the right person to diagnose - it's something specific to look for.

Heather - posted on 11/16/2010

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@Rachel - My son never had the ADOS testing, but he was diagnosed with Asperger's Syndrome by a licensed psychiatrist. For things such as SSI and school IEPs, the ADOS isn't necessary.

Rachel - posted on 11/16/2010

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The test you are looking for is the ADOS; It's considered the gold standard and requires a lot of extra training just to give it ... Not every psychologist, psychiatrist or even neuropsychologist will give it. My son had it done twice for free in University settings as part of studies in ASD;

Heather - posted on 11/16/2010

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Keep pushing. So many school officials aren't familiar with Asperger's Syndrome. Find a psychiatrist who specializes in autism. Check with your special education department to get recommendations.

Good luck!

Sue - posted on 11/15/2010

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You need to bring Your concerns to a Dr You trust who hopefully knows signs of problems with chldren!

Wilmarie - posted on 11/13/2010

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Jessica, you may also want to try and find a triple board certified child psychiatrist in your area. These are physicians that have are certified pediatricians, psychiatrist and child psychiatrist at the same time and can evaluate all the symptoms as a whole. This has been very helpful to us. After a formal medical diagnosis was established then the school evaluated under ASD. And as someone else said, sometimes the symptoms may be similar but many other things could be going on with your child and in some cases even more than one diagnosis that overlap.

Corena - posted on 11/13/2010

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Find a clinical psychologist or psychiatrist to do the testing. Dont rely on the school, they dont have the funds or desire to properly diagnose or accomodate your child. I tried them for years! My son is nearly 16 and just recently got a diagnosis when I gave up on the school and saught more qualified help.

Martha - posted on 11/12/2010

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Take him to his pediatrician. The pediatrician can refer you to a program that your county may have for children with developmental issues.

Andrea - posted on 11/12/2010

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The school psychologist should not be diagnosing your son, you need to see a medical doctor for that. To qualify for services through the school district, he only has to have "autistic like" qualities (at least in Ca). There are a lot of interventions they can do, without him having a diagnosis. It is all about how his abilities (or lack of ability) compare to other kids his age, and if these issues are not allowing him to access the curriculum being provided (getting in the way of his education).

Asperger - posted on 11/12/2010

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Schools only do the minimum! You can't rely on them for anything. Realize that if he is ever diagnosed with anything, they will have much more work to do. Many of us parents know that it is a reality that the school will go against everything you try. Request an evaluation in writing! They HAVE to do it. Many times you have to FORCE schools to abide by the laws. Sad but true.
That being said, with only knowing 2 things about your son, there are any number of things that could be, and most not even on the autistic spectrum. Be prepared, though, as many times children are misdiagnosed over and over before the real diagnosis comes to light.
You could try looking on the Autism Speaks website in the resources section and find the resources in your area. They may have a number listed for someone who does testing.
You may also need a referral from the pediatrician as the 1st person said. As for us, we had to schedule a consultation appointment, which takes up considerably more time than a regular office visit. Ours was 3 hours long.
Until then, read, read, read! Many of the techniques for treating the behavior issues will be the same across the board for related diagnoses. Start trying things to see what works. You'll have to do that anyway regardless.
Well, good luck with the school! I hope everything works out.
Have a great day! :)

Tricia - posted on 11/12/2010

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i did not know my child was not "normal" till he started school. how frustrating to have the school work against you. i would see his dr and go from there sounds like Asbergers to me that is what my son has. he is 13 now and with therapy and lots of help from the school he is doing well.

Anne Marie - posted on 11/12/2010

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We knew something was up with my son when he was only 3 or 4. But our Pediatrician (whom I loved dearly) kept saying, "There's not a damn thing wrong with that child." He is very smart and makes good eye contact, but he is a bit socially awkward, walks on his toes, and flaps his hands when he is excited or nervous, and was still having meltdowns appropriate to a 2 yr old whenever he got frustrated. The pediatrician first sent us to a psychologist specializing in behavior, assuming we weren't being "firm" enough with Jack. Waited two months for this appointment and (as I suspected), 30 mins. into our meeting, he says, "I'm not your guy. You need someone who specializes in neuro-psych evaluations for autism. When we finally got the proper testing, I was in shock/denial for a while but knew we had to act so we started with PT, OT, and a visit to a pediatric orthopedic surgeon to begin treatment for the toe-walking, which despite 7 years of PT, serial casts, Botox injections, and night splints, persists to this day. Jack has recently "graduated" from his OT and PT, but we are continuing his exercises at home and through more "real-life" activities like fencing classes and bike-riding, etc. Jack is such a great kid and I wouldn't change a thing about him -- his gifts far outweigh any deficits he has. I homeschool him to make sure he can excel in his special interest areas and get extra help in some of the other subjects, and not be bullied by children who don't understand and appreciate him. But I make sure he has lots of friends and social opportunities through our hs'ing group, neighborhood, church , etc. One thing I might add since your son is older. If he is diagnosed with Asperger's or ASD, talk openly about it with him and share some books about it -- This has helped my son understand why he feels different and struggles with sensory input and low frustration tolerance. Also share with him how many famous people have or were suspected of having Asperger's. You can google these things or contact me directly for some specific resources. There are so many great books and websites now to help. I hope to hear from you to let us know how things are going.

Nancy - posted on 11/12/2010

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Set up an appointment with a specialist in autism spectrum disorders. Some places that may have a good neuropsychologist are local universities or dig around your area. From the sounds of it, he could be on the high end of the autism spectrum and it could be Aspergers or AS. They can be very talkative but do not show the right response and they love schedules.

I wish you the best.

Rachael - posted on 11/12/2010

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We went via a referral from our Pead to a "specialist" psychologist that dealt with assessment and formal diagnosis of Autism in order to get our full diagnosis. They have a list of those you can see to do this....
I have a School Psychologist also who comes in and reviews our boy through the "system" but wouldn't rely on her opinion with all due respect... we always go back to the specialist when it matters and when we need more formal elements dealt with. Rule of thumb, It's always good to get a second opinion anyway/either way when it comes to something so important!!!

Rebecca - posted on 11/11/2010

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Like all the other moms said keep asking the doctor. They are the only ones that can diagnose him. But keep fighting for him, I look at my son(6) autisitc but very high functioning and know that I will fight for him for the rest of my life if I need to. I am blessed that he is getting the help he needs from the school and is ina great program.

Connie - posted on 11/11/2010

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Our daughter with low IQ was finally diagnosed by a Phd Pyschologist; she used the gold ribbon autism assessment instrument. We got a referral from our HMO to the JFK Austism and Behavior clinic in metro Denver.; now we have the challenges of hiring a behavior specialist and an occupational therapist. Good luck to all of us!

Lisa - posted on 11/10/2010

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That sounds very much like my son. He has PDD NOS which is a mild form of autism. I would recommend you contact the Children's hospital near you to see if they have a Center for Child Development. They should be able to do some type of evaluation. A child psychiatrist might also be able to do an evaluation.

Ali - posted on 11/10/2010

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Depending on where you live, the school team should include an Autism Specialist. He may not qualify for ASD under the academic definition, but may have ASD (it's different under federal law). I would take him to your family doctor and talk to them about a medical diagnosis. I'm a Special Education teacher and have dealt with this before. Good luck.

Denise - posted on 11/09/2010

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ask your pediatrician they should have a local therapy center that you can take him to get him diagnosed and help with some counseling for both of you

Crystal - posted on 11/09/2010

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Talk to your regular pediatrician for a referral for testing. It is the best place to start.

Karin - posted on 11/09/2010

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Our son is 7 going on 4 and still wears nappies at night. After years of being told there's no formal diagnosis and not enough characteristics classifying him autistic, the neuro-paediatrician has now said he's on the autistic spectrum. He goes to a remedial school but the things he says and does make me smile often though sad at the same time. My biggest wish for him is that when he's older he'll be able to be independent but it's one day at a time, lots of love, encouragement, support and therapy and teaching him skills that come naturally to others. All the best. I suggest you take your son to a Dr that specialises in neuro developmental delays for a diagnosis. Then you know what you're dealing with and how to best help and support him. All the best!

Florida - posted on 11/04/2010

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Do you live in Canada ? If so, check out Pathways, or take him to an appointment with a hospital pediatrician and see what they say. Aso his family doctor if he has one.

Sandra - posted on 11/04/2010

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hi, i have a 7 yr old son who has only been recently (july this yr) diagnosed with aspergers syndrome and adhd. it has been a long hard battle 2 get that diagnosis. like your son he is very bright but doesnt have emotions or respond 2 other ppl's emotions and also has lots of other autistic traits. it has taken me over 3 yrs 2 get him diagnosed, our gp and his school referred him him 2 camhs (child and adolesence mental health services) wer at 1st he saw an OT n she was useless!!! kept palming us off saying he was just "complex" but i eventually insisted on him being assessed by a psychologist who on seeing my son 4 the 1st time diagnosed him. i really feel 4 u as i know wot a struggle it is 2 get a diagnosis wen no body listens 2 u, u just have 2 keep on fightin hun n hopefully someone will listen 2 u and ur son will get the help he needs. xxx

Michelle - posted on 11/04/2010

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He might not be autistic, but if it isn't that it could be sensory processing disorder and if the school won't dig further then I agree, you need a referral to a specialist.

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