Although it's important to eventually get a diagnosis, it's even MORE important to get your son special education services. Those address his real issues and don't depend on a formal diagnosis. Write a note to your School District requesting an evaluation for possible special education services. Date the note because services MUST commence within 60 days (including summer days) from the date of the consent to evaluate. Put in your note that they should consider it your written consent.
It's sometimes hard to get a definitive autism diagnosis before school age. Lots of things can cause developmental delays. Your best bet is to make an appointment with a child psychiatrict, developmental pediatrician or pediatric neurologist who specializes in autism. A full workup is expensive and it can take months to get an appointment, but getting an official diagnosis is not an emergency situation. But getting your child help is. Help is available without a diagnosis. It's based on educational testing. If your child is not within the norm in areas of development, the school has to provide services for free.
I agree with Tzoya -- the important thing is that he gets help for any delays and challenges he has, and the school district will do testing to uncover those delays. It seems that your child's sensory issues are a major challenge, so he would probably benefit from a consultation with an Occupational Therapist trained in those issues.
My child went through an extensive evaluation, ruling out vision and hearing loss, doing all kinds of cognitive and language tests, doing observations at school, and doing the Vineland adaptive behavior questionnaire. After the diagnosis, he was immediately scheduled for an MRI and EEG. If he had gotten a diagnosis after just one doctor's visit without proper testing, I'd probably be just as skeptical as you are!
To help you see where an autism diagnosis matches or doesn't match the way you experience your child, you can do this childbrain symptom questionnaire for PDD-NOS. Here's the link:
http://www.childbrain.com/pddq6.shtml
You might also be interested in this questionnaire for sensory processing disorder:
http://www.sensory-processing-disorder.com/sensory-processin g-disorder-checklist.html
You mention that your child's speech is fine, but that his special interest tends to dominate the conversation. Here's a checklist to help you observe other aspects of how he uses his language.
Welcome to the forum, and good luck with everything.
It never hurts to get a second opinion. However, it sounds a lot likeWelcome to the board:)
Your seem to be on the right path...I would get an MRI too to rule too...ours showed delaled myelin which an eeg would not show up...Sensory issues and autism go hand in hand as well as obsessions.and stims. Read all you can and know he will be fine:) THIS is a very supportive board of many wonderful people with lots of advice for kiddos all over the spectrum...TONS to learn from everyone:) Dont feel alone..we are here:)
I would research ABA and a good speech therapist, OT therapy for his sensory issues..he sounds mild enough that early intervention will help him immensely and by school age hopefully he will be mainstreamed with little or no supports. He has enough red flags to warrant autism albiet mild he is still going to need lots of therapy..but with OT, ABA and social skills with peers he will do awesome..Best of luck and keep us updated:)
My son had a seizure at his 3rd birthday party and now he is almost four. When i realized it (which was just a few monthes ago!) by talking to diff people, i took him to his pediatritian who said he couldnt do anything unless it was happening in front of him so i switched peds and the other one said since its been so long and no others cant do nothing. I read up on the internet that it could be a brain tumor so i was (am) really freaked out.
My other concerns were that my son seems sensitive to light and a few times had fits screaming, crying till inside or out of light and asks to wear shades often when outside, dosnt like certain touch yells at wind blowing, dosnt like wearing clothes, usually dislikes being touched by people other than me, dislikes messy, gooey and unpredictable things/food, picky eater, dislikes loud, certain and unpredictable noises, gets real overstimulated in crowded or noisy places (sometimes at store is very happy and talks to everyone and sometimes get mad at people even looking at him or trying to talk to him and yells at them to stop or at my dads house at get togethers he gets cranky, irratable yells at people when they approach him, dosnt want to be hugged or given att. to and often puts himself to sleep in a room away from everyone or wants to be held by me or goes off and plays by himself) and rocks head like a ticking motion to the right and needs to constantly rub on my elbow when tired or overstimulated, is anxious alot and very very emotional and sensitive most days some worst than other. Hes not like this every single time but it happens alot. One said it was normal and other said if gets worse behavior modification.
I made an app with a pediactric neurologist whom we had to drive to vegas to see and he just recently told us that my son has mild autism! I was and am still shocked!! At the app. it didnt take very long he weighed and measured him and his head, made him grab things and try to catch a tape measurer he kept rolling up. My son was very apprehensive and cried and fought when the doctor looked at his tummy and back. Doctor asked if he was like that all the time with people. I said sometimes worst than other but sometimes he is also very friendly and wont stop talking (and he doesnt know this doctor too). He asked if there was any problems with his speech and hes a very good talker altho he does constantly babble onand on and hard to carry a conversation without dinosaurs popping into it. He asked if there was any other time i thought he couldve had a seizure. I told him about one time i thought seemed alittle strange i came in living room and he was laying on the floor and seemed dazed and flushed and i asked him if he was ok and helped him up and he said he was tired and he went and layed down on the couch staring at the tv. He said its possible it couldve been one.! He seems to not hear us someitmes when we call him and he seems alittle obsessive about thing (toys, things that are similar) being together with thier families or things falling down has to be put back up together etc. Asked if anyone else in my family was similar. My husband gets very self absorbed and you can have conversations witout him hearing a word and constantly talks about a subject hes into over and over again even if your not interested/anymore. Also i have 2 cousins (20 and 16) that have autism. All in all i felt it was too fast an appointment and no actual tests done to say he has autism.
Im not in denial i just really want the right diagnosis for him is all. The doctor said hes not starting him on any medications just yet and we have an eeg and follow up scheduled on july 11. My concerns is that maybe he has sensory processing disorder or something else and not autism but i know im not a doctor! Do you think the doctor will do more tests to get a more concrete diagnosis? To me my son dosnt act autistic altho reading up on it lately i do see alot of similarities in mild autism to him. I always thought something wasnt quite right with some of his behaviors but i never wouldve thought autism. Should i get a second opinion? Please tell me what you think???
Thanks so much everyone! I did take him to the school here for testing, that was actually the first step i took before all the doctors apps. and before i knew he had any seizure activitiy. He passed and the papers i got back said everything was normal, so he didnt qualify. I had some concerns tho as to the testing that went on period at the school. One is that he was asked to build a building out of three blocks and the lady showed him how and put two blocks down and inch apart and put the third block ontop of those. My son then put one block down and tried to balance the two blocks on top of the one block. It was like he was seeing it upside down and doing it in reverse! I was surprised whenhe did that. She showed him couple times more how to do it and he kept doing it his way and started getting frustrated and they stopped. I thought that was strange but apparently they didnt. When he was asked to copy an E on a peice of paper he did exceptionally good and the lady was very surprised. He didnt even do the hearing/vision test because he wouldnt let them so they said theyll just pass him on that one cuz he just got his well child exam. They did a couple other exercises as well. To me, but im not a specialist and they know what their looking for i guess!, it wasnt enough. So that was frustrating.
He does well sometimes in sunday school altho sometimes he wants to stay in a back room and play toys by himself, or cries when we take him but adjusts later they say or recently he got into a fight or something with another kid, But usually hes pretty good going there. Hes fine at the park except sometimes all he wants to do is talk or play dinosaurs and the kids look at him weird even if their his age! But sometimes plays well too and i think hes getting better as ive been taking him very often. Another thing is i read in autism is a lack of imagination, my son has a huuuuge imagination in that he aaaalwaaays seems to be in imaginary land. Do children with autism sometimes have good imaginations if its mild? I didint ask doctor because at the time i didnt know much about it. Also the doctor told me that with help my son should "outgrow" it and i read that they dont outgrow autism they just learn to deal with it better, is that what he meant? He does seem to get afraid of harmless objects such as a retired train by our house in a park he was sooo terrified and almost ran into traffic one time to get away and cried and clawed like an animal! He loves trains and thomas so i didnt expect him to act like that. I took him a few weeks later but not out and he was still terrified so we didint go out. The optomotrist said that and the light sensitivity was probably normal.
I doubt we have a developmental pediatrician or a pediactric neurologist that specializes in autism here in our town but i will definately find out thanks. We had to drive to vegas just to see this neurologist and him and 2 others he works with in the clinic and another neuro. near them are the only ones. Ive havnt heard good things from the latter one so i dont think ill be taking him to that one. I will check in pheonix tho. I am definately going to ask for an mri next visit. He said an eeg is all hes going to schedule for right now, so hopefully hes thinking of more tests? Also should i bring any of this up to his reg pediatrician who thought everything was normal? I was originally trying to get an eval. set up with an occupational therapist here in our town who just opened but didnt have her own place so worked through agency but she wouldnt call back and that fell through it sounded kinda screwy anyway. Hes starting preschool at the end of august but it isnt through the public school system should i wait on that or keep him there till everythings def figured out? Also to get a full eval. from all those specialist how do i go about that? Do i ask the doctor to set that up or do i do it on my own? Me and my husband were talking, and that im bringing up all my concerns at next app and eeg and see if the doctors open or closed to possibilities then well probably drive down to pheonix for a second opinion. Thankyou everyone so much for all your advice!
Welcome to the msg board 143hayden,
Somebody once told me, if you're looking to Dx autism, just look out for the Triad of Signs. Firstly: Impairment in communication. Can your child engage eye-to-eye contact when he/she is talking to you? Mine didn't, at least not b4 the early intervention programmes we sent him to.
Secondly: Social Impairment. Is the child able to interact with other children in a play area, i.e. a playground? My 8 yr autistic boy has a younger brother NT (Normal Typical) who's 6 yr who can join the fun in a playground even if they were strangers. But my ASD boy will just stare out somewhere...away from the other kids, seemingly oblivious to them.
Thirdly: Rigid, Repetitive Obsessions. Does he/she have certain routines to follow each day, certain toys they will play with or even arrange. Mine did. He was arranging his toy cars way back when he was 3 yrs. And I wouldn't be surprised if they had been in a certain order. If you disturb the arrangement, he'll correct it back !!
BOTTOM LINE !! Yes, we need a COMPETENT professional to confirm the diagnosis. I use the word confirm coz it's a realization we get as parents when we scroll the checklist ourselves on websites to assess our own child. Then we tick off so many of the items. And that is when reality sets in. And, btw I got my checklist from THIS website way back in 2003...I never went to this Msg Board at all, till now, 2007... 4 years it took for me to open up...And I'm glad I did...
Carry on, 143hayden...you r not alone... cherio and Happy Fathers' Day to all you daddies out there.
The important diagnostic signs are described in the above posts. The best professional is someone familiar with autism...You can't go by the specialty, but rather it's best to go with someone with tons of experience and an excellent reputation. Talk to parents in your area to get some names...My son was initially diagnosed ASD by a pediatric neurodevelopmental specialist at about age two. We got a second opinion at age 4 from a Developmental Pediatrician...I liked the first doc better. Also, our son had a complete neuropsych eval at age 4 which left no doubts in anyone's mind that it was autism. The testing was done in conjunction with the ADOS which was performed by a pediatric psychologist. I agree with the above posters...Don't get overly hung up on the exact diagnosis, just keep pushing forward for evaluations, services, second opinions, etc. I think that after the EEG you'll have a better idea. And I also agree that your child needs an MRI. Good luck and keep posting! PS I am a family doc
My son Mason has a seizure disorder and was just recently diagnosed with Autism...Our very first appt with his neuro over 3 years ago, had said she thought he was autistic and that seizures can sometimes be a symptom of autism...she said she wanted an MRI just to be sure...when she got the results she told us she was actually surprised...turns out Mason has brain damage on the left side of his brain. People don't know a lot about seizures until they actually have to deal with them...the different kinds of seizures there are and what they can actually do to a person. Until Mason started seizing I just thought seizures were the thing where people fall to the ground and convulse. I was soooo inexperienced! But even the effects seizures can have on a persons behaviors and learning...It took us so long to get an autism diagnosis because none of these professionals wanted to be the first to diagnosis him with autism if it could be the brain damage and seizures...but after 3 years of different meds and therapies and nothing seeming to help the psychologist said it was time to diagnosis him with autism, and start treating it like autism, rather than "symptoms" of the brain damage and seizures. I would definitely read up on seizures...like I said there are so many different kinds to educate yourself on...keep a good record of any type of seizure behavior you see and be sure to report it to your neuro! I don't want to scare you but seizures can cause physical damage to the brain and that is why we have to be so careful with Mason's seizures. And it never hurts to get a second opinion! In your case I think it might be good that he got the diagnosis of autism immediately...I know it's scary but I think if you just go with it, you can get a lot of help immediately...we were opposite and for a long time I was happy that I didn't have to worry about autism too...but now that Mason is 6 and we are just first starting get the help we need, I wish I would have pushed a little harder for the diagnosis. I still sit here sometimes and wonder "is it truly autism?" But I know that it's all about the help I can get him, not his diagnosis. And unfortunately here in Wisconsin ( I don't know if it's like this in every state) there is a lot of help out there for Mason, but it only started after we got the diagnosis of autism. Sorry this is so long! I hope I wasn't rambling too much!
Linda, my dd also gets upset when brother takes all of some imaginary food. I just reach behind my back and pull out some more that I made!
It IS a huge myth! Yes my dd does some scripted play, too. But BOY HOWDY, you shoulda seen the fight that erupted yesterday over her brother taking ALL of the IMAGINARY ice cream! Welcome! Glad you are getting all this great advice above. I hope you are
I thought the evaluation wasnt that great and i told my husband that as soon as he got home, especially about the blocks, which he thought was strange too. I was going to have him retake next time it came around but i figured theyd just be the same as they were the first time! He did get an eye evaluation where he identified objects instead of the usual alphabets and got his pupils dialated and everything was fine the doctor said. With an autism diagnosis will he be able to get help alot easier/faster? I took that test that was posted up and it concluded that he has a chance for mild autism(ppd-nos i forget how its spelled sorry!) My son has a huuuge imagination and always plays pretend so that was a big thing i was wondering about cuz ive been reading eeeverywhere that autistic children dont have imaginary play. My sons very good at it (imaginary food too amonst everything else) altho it gets in his way around other children/people hes always walking around like a dinosaur or talking about dinosaurs or dreaming about dinosaurs! Which we told the doctor and he said thats part of it. So i did get alittle confused to hear all over imagination didnt exist with autism! Thankyou so much everyone ive been getting so much feedback and information, its helped me alot! Hi again! Please keep in mind that alot of "reading material" on AUTISM is OUTDATED, and even if it was written relatively RECENTLY, it STILL may be OUTDATED, AND NO ONE KNOWS the answers! We're getting closer, and Autism is getting more attention, thank goodness(!), but you can't, and shouldn't believe everything you read...Go with your gut, your knowledge of your child, parents that you meet online or in person that you come to know and trust, special ed teachers who are specifically trained in autism, etc. Remember, many special ed teachers don't know much about current autism evaluation, treatment, therapies, etc., especially if they are older and/or have not taken extra classes or a personal interest in autism. My son's original diagnosis for the school district was "Developmental Delay". Children can carry this diagnosis for a number of years before having a more specific diagnosis. As soon as we got the confirmation by second opinion of Classic Autism, I had my son's diagnosis changed by the school. He will have better access to services this way. A great resource book is "Educating Children With Autism" by the National Research Council, I believe...It's in the long "Recommended Reading" post (which, by the way, is a great way to get input before purchasing a book or other resource!). This book is as good an investment as "From Emotions to Advocacy...". I bought both on Amazon.com. Just remember to take things one day at a time...You are doing a GREAT job!!!
I also told his assistant I needed a letter on Neuro letterhead with specifics on his asd and stuff. She said they usually give everyone that prescription paper and have no problems with the schools. I told her im in arizona and theyr harder with stuff like that and she said they dont type up letters like that cuz it would take forever to do that for every kid. O ya and she said the doctor wont write that he has asd because his diagnosis says he has pdd-nos, but isnt that part of asd, on the spectrum?? I dont think she really understood or knows what she talking about! She said he wont write something else from what he wrote earlier maybe she thought i wanted her to write he was severly autistic or something? Anywayz she said she can send me his medical papers on file for me to show the school if i have any problems so thats what their sending me. Im a little worried but hopefully he will qualify for something. Ive searched autism experts in vegas and surprisingly theres only one! Theres between a 6 mth and 1 yr wait to see her, I figured vegas has tons of people it shouldnt be too hard but apparently it is. Im going to have to take him to pheonix. I havnt made any apps yet and havnt called the resource center yet ive been alittle side tracked by the death of my cat :( Ive been meaning to type up a detailed medical history for him and havnt gotten around to doing it but i wiil definately do that, its a very good and smart idea. Thanku so much AndrewsMommy for all ur help! I will let u know what goes on with the mri and everything. I hope things are going good for u and ur son :) Thanks again! Dear Nikki, I am so very sorry to hear about the loss of your cat. We have a cat, and our animal friends in life are so much a part of our families. Do you have a copy of the poem, "The Rainbow Bridge"? I think that's what it's called. If you do not, I can find and post it. Regarding your son's MRI...That's GREAT news! Regarding the nurse. You are probably right. She doesn't "get it". Therefore, here is my next recommendation. Type a letter to your neurologist...Something like this: Dear Dr. _________, As you already know, my son __________ has been diagnosed with PDD-NOS which is a non-specific diagnosis that falls under the Autism Spectrum. It is now well established and accepted that Autism is a Spectrum Disorder, and I am respectfully requesting that you please dictate a brief letter stating that my son has ASD, or Autism Spectrum Disorder as I discussed with your nurse, ______, on ______. The reason I am asking for this is that I have been in contact with autism families and support groups in my area as well as in other parts of the country and have found that it may be much easier to get my son the services that he needs using a diagnosis of ASD rather than PDD-NOS. Your office staff has kindly offered to send me a copy of my son's medical records which I greatly appreciate. However, I want to ensure that the school district has no reason to deny the special education interventions that my child so sorely needs. I know that you are a busy man, and I thank you very much in advance for your time and attention in this matter. Sincerely, __________________ And Nikki, don't forget to make a copy for yourself as well. Also, copy the records they send you. Keep one in your son's permanent home file, and save the other in case you do need it. Don't forget to read it first! Hope this helps! Okay, I apologize again, but it sounds like you need a second opinion. The neurologist saying, "He's probably just frustrated" but not offering other possibilities or recommendations is flat out wrong. Also, the letter should say that your child has "Autism Spectrum Disorder", NOT PDD-NOS as that is too non-specific for many school districts. Call the doctor's office and ask to speak to the nurse. Tell her that you want your child to be scheduled for an MRI but you forgot to mention it at the visit. Ask if this could please be done without your having to come into the office again. Also, ask her to please have the doctor dictate a letter for the school stating that in his professional opinion your son definitely has autism spectrum disorder and should qualify for the needed services related to the diagnosis of autism. Request that the PDD-NOS be removed from the letter as this will only serve to cause you more difficulty in getting your child the education that he needs from the schools. By the way, there is nothing wrong with this request. You are not asking the doctor to lie. Many docs don't know what it's like to be in our shoes (including myself until I had my son). He should be happy to help you in whatever way he can! You are NOT over-reacting. These behaviors are not normal. Yes, some could be part of autism and frustration with not being able to communicate. But they could also be related to subclinical seizures as you mentioned. There can also be a psychiatric component. Please try to find some professionals that are at least familiar with, if not experts in, children with autism. It sounds like you would benefit from other opinions...Look for a neurodevelopmental specialist, a developmental pediatrician, and/or a pediatric psychologist or psychiatrist...And remember, they must be experienced with children who have autism! Hi again Nikki! You are doing a GREAT job! Hang in there!
You mentioned that it could be psychiatric component, my side and husbands side has a bunch of conditions doctor said go in same category as autism, like shcitzophrenia, bipolar, tourrettes syndrome, depression, epilepsy, autism. I dont think i left anything out but pretty much we got it all! Should i get a psychiatric evaluation too? Thanku so much! And i will look into the specialist u described. Thanks! Im so sorry, Linda you must have really loved him, I know I really loved my cat, sometimes I think my other cat is her coming around a corner and it makes me bawl my eyes out. I know what u mean Im veeery emotional right now. Its really hard to deal with. I hope u start feeling a little better and thank u so much. I just got back from the nuerologist in vegas and he said the eeg was totally normal. I forgot to bring up mri but will with his pediatrician in a few days. I brought up the strong imagination my son has and neuro said hes not diagnosed with the classic autism but with pdd-nos because of his autistic traits. I asked him if i could get a paper for his early childhood intervention screening i am taking him to the end of the month since they passed him last time. He gave me a paper and he made it seem like they pass alot of kids with autistic spectrum disorder, at least thats what i got from him when i mentioned somethings that went on with the screening. He said i should see if i can qualify thru the school then if not look into a private school called Suttin or something like that? I should also take him to the playground everyday for social interaction and get some books and go over basics 3 hours a day as some at home intervention. I also told him that my son hits his forhead or eye real hard, sometimes exclaiming "o man" or "aahh!" real exaggeratively for no apparent reason and when asked about it responds "o nothing". He does it when watching movies (sometimes on sad parts but sometimes dosnt do it at all). Its really weird sometimes it just comes out of the blue! Also couple days ago he was standing by fish tank with a weird expression on his face and hitting his head hard and i asked him whats wrong he said nothing. He kepts doing it with look on face hard to explain and asked him again he said spiders were crawling around his head and his temple, forhead and eyes hurt. Neuro said hes probably just frustrated, does anyone else experience this with thier kids? It seems like hes htting himself kinda hard! And been doing it more and more lately altho hes also seeming alot more agressive, yelling and short tempered too. A few days ago he also came up to me and wanted to be held like he usually does thru out day and i looked down at him a lil while later and hes was looking up at me with a kinda far away weird look in his eyes i asked him whats wrong he didnt answer me just kept looking then i asked again and he burst into tears. This happens from time to time and im not sure whats wrong?? And he wont tell me either usually just cry then suck his two middle fingers and try to go to sleep. I am alittle worried it could be seizure related but im not sure and neuro asked if hes been having any more seizures where he shakes i said no so he said hes probably frustrated. Anyone have anything similar? Hes also vomited a few times while eating something he was enjoying like revolted by taste all of a sudden and vomited in his sleep a few times too and wasnt sick any of the times. I am worried about seizures and subclinical ones since i heard they coexist as much as 30% of autistic cases and usually progresses with age. Should i ask for a longer eeg or am i over reacting? His eeg only lasted about 45 minutes and we couldnt wake him up at all toward the ending for readings. Just worried something will be missed i guess. Some input would be great! Thanku so much everyone! Thanks so much. I dont have a copy of that poem, ill try searching for it online tho. Ive had my cat since i was in 4th grade. I got her bloodwork ran twice and within 5 weeks her kidneys went down hill fast so I put her down. Animals are a part of our families, ur right, its so hard! Thanku for ur kind words. Ill type out a letter to the doc. Thats a good idea and he probably will because obviously all the kids hes seen arnt asking for the same letters like the nurse said so I dont see what the problem would be. Ill def. go thru them and make copies as back up. I need to get all his records since he was born too. Theyr spread out in hawaii, vegas and here, itll help if i have everything since i dont think he ped. has them all. Thanku again so much, Kirsten! Nikki, I had to have MY cat put down due to chronic renal failure, July 4. He was 15, had inflammatory bowel synd. and hyperthyroidism, and I was trying to keep him going despite ALL 3. It was the pits. I am just now getting to where I am not crying more than once a day over losing him. It never gets easier -- I am 50, and he is the 8th cat I have lost in my life. I still grieve over every last one of them. Hope things go well with getting a dx. It is always hard to get the scoop on local diagnosticians. I have found peds office nurses usually are a good source of info, too! Parents tend to talk about the emotional quality of their experiences more openly with them ...
able to find a good doc to do the eval & finally get that confirmation. I
agree, your school eval was a JOKE. Ours did similar things--assisting dd
when I know they weren't supposed to as well as skipping questions,
assuming she'd know the answers. Crazy! Keep us posted and any
questions that come up, just ask. Tons of support & advice await you here!
Welcome again!!
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